Estée KlarThe Joy of Autism

I’m writing my thesis and am hankering to blog – so many things on my mind with the recent Ontario budget proposal, the ever-so teensy weensy allowance for an individual on ODSP to take home a couple hundred bucks a month and the way we may have to reconsider how we advocate for support as autistic families. Can I say at least it wasn’t cut altogether as was the original threat? Also in the budget is a brief mention of autism services and a reduction of wait-list times for those in urgent need. I’d like here to write a post for all of us to reconsider what all autistic people and families need, and how we have to lobby.

I’m writing my thesis on autism advocacy, in particular, among non-verbal populations. There are wonderful contributions to this already out there to be cited. Also, The Autism Acceptance Project (TAAP) is in meetings, where the autistic population is setting the agenda and I am a facilitator/organizer (also we hope to announce an upcoming event soon). I’ve thought long and hard about the work of autistic folks and re-evaluate my role as a partner and ally to Adam and others. The most fundamental concern I have that will effect all autistic people and their families is autistic rights – to be viewed as valuable citizens; this means that the “spectrum” concept of functioning does not preclude rights and that all people are equal and valuable. This is addressed in substantive equality, where differential treatment must be sought for many to achieve equality (Rioux, 1999). In other words, many disabled people require support and accommodation to participate in their chosen ways in society. What is particularly worrisome to me as a parent of an autistic child, is the lack of access and lack of education. Yet, I also see our traditional education system crumbling, which to me, provides a new opportunity to finally give access to education for everyone. This post proposes not only services to alleviate families, but many opportunities for autistic people of all ages.

Here, I see potential for those who are also ABA lobbyists (I will specifically mention this group since ABA is cited in all government literature now and as I predicted in 2005, it would be the only service available to autistics) to change their drumbeat from tragedy to substantive rights. I’ve cited recently the Jefferey Moore case in British Columbia (2012) wherein it was stated that the notion of remediation risked adverse effect discrimination. I would argue the same – that when we believe we have to remediate an autistic individual, or any individual with a learning disability, before allowing them access to school, or to an education, then this is a fundamental oppression and devaluation. ABA schools can consider integrating academics into their methods as well as any other therapies out there, thus supporting, enabling, respecting (instead of normalizing) autistic being. That Augmentative Assistive Communication (AAC) and other supported communication techniques is not considered a right to communication should be an outrage to us all. At one time, the Deaf community was not allowed to sign! Now, the same thing is happening to the non-verbal autism community. The most fundamental right is the right to access communication. Yet, teachers also have to learn how to support an autistic person to use them, while also considering the autistic learning style (there is research out there you can find easily on this). There are enough autistic independent typists as well as teaching methods available. I could go on — video monitors, white boards, computers – these are fundamental for autistic learning and we all have a wonderful opportunity to learn to support autistic individuals! My question to educators and supporters, how can we change the way we do things to support autistic rights?

Back to the the right to education – music, art, math, science, geography – all of these are fundamental to an individual’s quality of life. Adam is autistic and has a curious mind. When he is introduced to new topics, they may be hard at first if they are taught in traditional ways, but as he learns he becomes more interested, proud and excited; doors open and he wants to learn more! Should an autistic person in a Verbal Behaviour or ABA program be denied access to academic material when they have read the same word since they were a toddler? Or, can this new material be integrated within a program? How creative can we be?How can autistic children be allowed access to their own interests and material and how can teachers facilitate their continued learning of what interests them? These are also fundamental rights – the right to choose and to follow one’s own path. While it has been cited numerous times that everyone – disabled and not – can benefit from an individualized approach to education – it as also been deemed difficult in the traditional system where teachers have been the gatekeepers of knowledge.

I was turned on recently to Sal Kahn, who has created a series of educational videos on YouTube which are utilized by some classrooms. Some teachers are reconsidering their role as facilitators instead of lecturers at the front of the classroom, monitoring a child’s work on the computer using Kahn’s lessons, and then stepping in to help when needed. Online learning can be very effective for autistic individuals and must be considered if we are to enable a future of autistic participation and contribution. This provides fantastic opportunities where video learning and technology – such as Mindcraft – are enablers – autistic people can build in this program, make art and new worlds, and this can be a monitored learning program (and many do which attests to innate autistic intelligence and ability). Online friendships and self-advocacy, as reported by many non-verbal autistic individuals, have also enabled better socialization skills in virtual and real time. How can rethink such spaces that are already at our disposal? How can we allow for autistic work to take place also on autistic terms?

We have to reconsider these spaces from traditional ones to creative ones where all people can participate. At the moment, I can say that while I work to have Adam included, he is mostly segregated – goes to school, goes to a few programs with an aide worker which thankfully enables him to participate. Within the system at our disposal, we work with Adam’s team to provide him the best we can and we are all learning. But this is what I ask of all Canadian society – at least give Adam, and others, the opportunity to participate. To-date, he is not allowed. Even trying to get Adam into certain schools is fraught with traditional testing – not allowing him frequent pre-visits or adapting work in formats that he can best respond to. All I can say is, the world is losing out too for Adam can give back so much.

As I consider my daily life as Adam’s mother, and how my heart wrenches for him – I at least want him to have choices. This drives my work towards a more inclusive future (which may require specialized education in the real sense of education for his future – not sequestering, normalizing and presuming incompetence) for our children and for families to support this, this also traverses to the arena of advocacy with such questions as: What of my role as his parent and an “autism rights activist?” How can I, as a non-autistic person who is used to traditional hierarchical boards, committees and organization, become familiar with an alternative way of organization and allowing a new space, or room, for autistic self-advocates? How can autistic people enable us when some of us are listening? What about virtual spaces and how might they be maximized? How can we allow for dissent and debate that reflects true democracy and recognize that not all autistic people feel the same way, not all people require the same supports, and not everyone will agree? What must we recognize in ourselves as neurotypical teachers, parents, therapists, caregivers and charity organizers in stepping aside and lending a hand to create this space? In speaking of charity and it’s historical role of “handing out,” how can we build communities that support self-advocate needs? In one sense, I truly understand the need for autistic people to have this space, and predominant “voices,” if you will, but we also all have to recognize the important role of allies and parent supporters and educate families about the history of the autistic self-advocacy, and its fragility. We cannot afford to lose the ground gained by autistic-self advocates! Autistic people also have to allow for us to become political facilitators alongside autistic people without us more verbally loquacious dominating the agenda or “speaking over” autistics. Autistic people can teach us patience and learning to listen without speaking over. Let me ramble here by making another comment – research teams and funders have to recognize this urgent need for emancipatory research that requires much patience and time, and make allowances for it.

Here, I acknowledge the independence via interdependence model that I write a lot about – that we tend to advocate for complete autonomy and independence that drives our therapies and expectations for autistic people before giving them full value and citizenship. Yet when we truly look at how interdependent we all are – on our families, on technology, on a service system, none of us are independent. This is the area in which we need to discuss when we talk about autism services – not a cradle to grave service where we put autistic people away, but a collective economy of support where autistic people can also contribute and where we do not view responsibility as something tragic. I can only think that in North America this notion is strongest – when I lived in Europe, families often stayed in the same home all of their lives and supported one another. Part of me can’t help but think that this notion of supporting our children into adulthood is a construction of the industrial revolution – where children were sent into factories to work. As we see those structures crumbling, I hope we can reconsider that supporting one another should be something to be grateful for, not a tragedy. Will our quality of life not improve when we know that all of us who need more support at various points in our lifetimes, will also be respected, supported and not be made to feel guilty or less than for it?

Finally, I can think of all the “job creation,” for autistic people and support workers alike when I think of Ontario’s new proposed budget. Yet as long as we are wedded to this false notion of “independence,” we might continue to build cities which isolate everyone. For certain, this is the ultimate paradox – I think we all feel isolated in many concrete jungles, and we need a call to building collectives and communities which utilize and respect the varying contributions of all citizens. To respect human variation and possibility for re-building, I draw on Jennifer Sarrett’s Autistic Human Rights: A Proposal:

“[H]uman rights are to be enjoyed based on fundamental frailty and vulnerability inherent within the state of being human. By focusing on vulnerability, a state that all people experience at various points in life, disability and difference becomes an experience that can tie all humans together.” (2012, Disability Studies Quarterly, unpaginated)

Also, quoting Eva Kittay, Sarrett includes that while not all people are equally vulnerable, that is, some people are more vulnerable than others, it does not mean that the more vulnerable are less worthy or entitled to justice, equality and human rights:

This principle, in contrast to the others, would not be based on our equal vulnerability, nor on our possession of rationality, a sense of justice, and a vision of our own good. Instead, it would be based on our unequal vulnerability in dependency, on our moral power to respond to others in need, on on the primacy of human relations to happiness and well-being.” (Kittay in Sarrett, 2012)

Sarrett further states that,

“human rights do not have to rely on a single doctrine – dependence or fragility or oppression or humanness or capability. The autism-based model described here is built on a foundation of dependence, individuality, and valuing human diversity, allowing for the inclusion of the entire sphere [note: she uses 'sphere' instead of 'spectrum' which she considers ableist] of cognitive, intellectual, physical and psychiatric traits within the human condition. Accounting for and respecting variations in the human state are central to the ongoing and dynamic process of developing human rights models most effective for any time and place. Any model of human rights should be in constant conversation with contemporary issues of diversity, medicine, law, and advocacy. Thus, all models…should be subject to alterations and updates to ensure the most acute and powerful application in every community and for every person.”

She notes that while some positive rights have been granted for education and health care, that the autistic rights model, fashioned after civil rights, has difficulty with the promotion of negative rights which includes the right to assemble. Sarrett says that negative rights are integral to this inclusive model of human rights, but self-representation and advocacy can be difficult for many non-verbal advocates who have assembled more easily online, and find real-time meetings and interactions very difficult. This asks us to reconsider how accessible our boards, committees and systems and how they enact as barriers to many autistic people. How might we re-organize our organizations? I, for one, believe that the Internet provides the future possibilities for the democratic process.

Reference:

Sarrett, Jennifer (2012). Autistic Human Rights: A Proposal. Disability Studies Quarterly. Vol. 32. No. 4.

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“The voice of disabled people should be present in both disability studies and applied approaches to disabled people, but the voice should take different form in each. The influence and direction of disabled people should permeate the applied fields. If rehabilitation professionals really believe in self-determination for disabled people, they should practice what they teach by adhering to an active affirmitive action program in their own departments; by adopting the books and essays of disabled people into their curricula; and by demanding that disabled people have an active voice in conference planning and on the platform at conferences. In the liberal-arts active voice, the creative voice, the narrative, can be articulated in the humanities, and in qualitative and intepretative research in the social sciences.” — Simi Linton, Disability Studies/Not Disability Studies, (p. 141-142).

I would like to very briefly discuss the current qualifications of becoming a Board Certified Behavioural Analysis – the practitioners of the most popular therapy for autistic children in Canada which is Applied Behavioural Analysis. It is an excellent topic for further discussions and research into clincial and educational rehabilitation in the field of autism in Canada which support a medico-pedgogical approach that has become problematic for autistic agency.

This from The Insitute for Applied Behavioural Analysis:

DEGREE VERIFICATION: ALL applicants for eligibility to sit for the examination for Board Certified Behavior Analyst MUST attach documentation that they have a graduate level degree (master’s or doctorate level) in behaviour analysis or a related field, as recommended by ONTABA.

An example reading list which is telling of the area of focus is here.

Here is a description of ABA from ABA International Org:

As in other experimental sciences, research is usually classified as basic or applied. In behavior analysis, basic research attempts to identify principles underlying behavior change. For example, basic research may attempt to improve our understanding of reinforcement or shaping.

Applied research attempts to identify effective ways of dealing with behavior problems in schools, clinics, workplaces, and other settings.

Recently, I had a private discussion with someone who is to become a Board Certified Behavioural Analysis who has a personal interest in critical theory and interpretations of disability. This person was having some major difficulty with the attitudes and procedures surrounding the approach and decided to take the interests further. There are a few people in ABA who have endeavoured to study critical interpretations of disability studies for similar reasons. While this individual remains a practitioner, it was conveyed to me that allegedly, a Master’s degree in Critical Disability Studies (or I gather any Liberal Arts studies) will no longer be accepted. (Note that CDS falls under the Faculty of Health at York University, but is a multidiscplinary area of study). Rather degrees in support of the pshyc-sciences are necessary for becoming a BCBA (as they are for other rehabilitative professions). I think it would be an important research direction for someone to examine this further, and to invite those within the field to engage in discussions why a critical study of disability is important to the field of autism education and inclusion and social equity in the same way Simi Linton discusses in the quote I began with in this post.

The criteria for acquiring a BCBA certification is a Masters degree. However, the BCBA programs now direct it’s applicants seemingly away from Critical Disability Studies towards “Applied Disability Studies” in some academic institutions like Brock University.

Linton’s article is titled Critical Disability Studies/Not Disability Studies to highlight areas of difference between the clinical practice/approaches between one where the voices of the disabled are included, not objectified. In thinking about inclusion in making clinical practice better, she says, “feminist scholarship has also turned the entire academic curriculum inside out to reveal the epistemological consequences of the androcentric biases in the knowledge base” (p. 142).

She also highlights the objectification of disabled people through the sciences and that it “can be redressed by developing scholarship from the position of the disabled subject; by developing alternative methodologies to the empiricist approaches that have dominated the study of disability; by developing an active voice in the humanities; and by breaking down stereotypes through the analysis of metaphors, images, and all representations of disability in the academic and popular cultures.” (ibid).

Do ABA practices continue to perpetuate bio-determinist views; to “explain human behaviour and achievement in terms of biology?” (ibid). While I would argue that yes it does, I would also like to suggest ways and open up the discussion with clinical practitioners to not simply objectify the literature, performances, art, and other contributions for analysis, but to consider ways of including both critical interpretations and the inclusion of autistic people as part of our learning and practice, and in shaping the practices that have been so often used on people with autism. I agree with Linton that there are many people in clinical fields working for political change for the disabled, but as she importantly notes, it’s not because of the knowledge acquired from the applied sciences, but from a “personal and moral commitment to improve the lives of disabled people.” (p.148). Futher consideration into multidisciplinary curricula in the area of clinical practice should be discussed. Including autistic people and work is a way towards creating supports that could lead to more effective and supportive methods that also acknowledge autistic challenges, strengths, and inherent civil rights.
Reference:

Linton, Simi. “Disability Studies/Not Disability Studies” in Claiming Disability: Knowledge and Identity, pp. 132-156, 1998, New York University Press.

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Is there a place for the disabled in society?

The purpose of the title is from historical readings that the disabled in history were displaced and living on the margins of society. Who were considered/are considered valued members of society? Socities have been obsessed with placing the disabled into a variety of contexts that justifies human existence, or fears (demons, monsters, mad, deviants) making the normal the privileged members. Without a comparative measure, as it were, what would we humans deem ourselves to be?

I have a series of questions that I’ll be considering (probably for a lifetime). Feel free to try and contribute thoughts in the comment box.

Pro/claiming Autistic Identity:

Is claiming biological identify leading to another possible eugenics movement? Is there a danger to biological self-identification? How important are self-identification and self-advocacy and pride-movements?

Are pride movements perpetuating the dis/abled dichotomies that already oppress? Do you think they have a positive purpose? Should there be a point at which we stop advancing pride movements, in other words, move beyond them? When is a good time to do so?

How important is the label autism to accommodation if autism is a social construct? (It is). Where “special” and enforcing “inclusion” have already proved challenging, maybe even impossible thus far, is it so because we continue to place the disabled out of the confines of the norm. In other words, are we continuing to perpetuate a false dichotomy that does little to value and serve, but more to segregate and isolate? By wanting inclusion, we are saying we are excluded? Does this stance further the goal itself, or not any longer?

Who Gets To Produce Knowledge About Autism?

The DSMV, behavioural analysis and observation, and the categorization of people.

Who gets to diagnose whom? Who gets to produce knowledge and categories about autism? In the past, and to a large extent today, it is non-autistic or “normal” people and we now witness a gradual inclusion of disabled “voices” to this mix. Do disabled individuals appropriate notions of impairment and abnormality enforced by long-held categories made originally by people who have not had disabilities? After all, autistic people are still largely tokenized minorities among autism charities, autism committees, and as participants in autism research studies.

Accommodation and Acceptance:

To what extent is the citing of needs/impairments an important part (or not) of acknowledging that we are all part of the abled-disabled continuum, which herein, I have already parsed?

Do you think the term autism and/or disability will exist one hundred years from now? Or are we a society that simply wears the same dress, just in different colours?

Have we learned anything from autistic self-advocates that assist us to simply accept autistic individuals and value the right of all people to exist, be educated, and be valued, no matter what level of disability, in society?

Utopias and ideals have perpetuated individual and societal notions about what we should be – what we are versus what we aspire to be. To what extent may this continue to be a driving force (as in survivial of the fittest) under an capitalist/economic lens, and where are we now with this “force” in viewing the disabled as part of this? As disability has always been a part of human existence, despite eugenics movement’s attempts at normalizing society and eradicating “deviant” people from the norms, how far have we come to accepting, embracing and valuing human difference? After all, while the eugenicists caused great harm to many people, and have continued to do so as a legacy, they didn’t succeed in eradicating human difference.*

Reference:

*In reference to the eugenics movement from Davis, “Constructing Normalcy” in Enforcing Normalcy: Disability Deafness and the Body, pp. 23-49, 1995:

“The conflation of disability with depravity itself expressed itself in the formulation ‘defective class.’ As the president of the University of Wisconsin declared after World War One, ‘we know enough about eugenics so that if the knowledge were applied, the defective classes would disappear within a generation.’ At it must be reiterated that the eugenics movement was not stocked with eccentrics…Rockefeller, Churchill, Roosevelt, H.G. Wells, John Maynard Keynes”…among a longer list. Some food for thought when thinking about such questions.

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We are The Adam Family. As we grow into our lives with autism, it becomes increasingly difficult to see the “normal” world as the actual opposite of what it purports to be by that label. The more on the margins of society we seem sit, the more absurd “the rules” seem to be. In thinking more about Inclusion and The Canadian Charter of Rights and Freedoms, I realized that the idea of Adam having his own family, therefore, is not a sight-out-of-reach. It is a possibility, his choice, and right which must be enabled and protected. How, on earth, if you are a new parent to an autistic child, particularly one like mine who has limited verbal ability, could this be possible? Well, it may seem a bit quirky, and some would be up-in-arms against us citing us as a future social welfare burden, but first let share this take on The Addam’s Family series:

Much of the humor derives from their culture clash with the rest of the world. They invariably treat normal visitors with great warmth and courtesy, even though their guests often have evil intentions. They are puzzled by the horrified reactions to their (to them) good-natured and normal behavior since they are under the impression that their tastes are shared by most of society. Accordingly they view “conventional” tastes with generally tolerant suspicion. For example, Fester once cites a neighboring family’s meticulously maintained petunia patches as evidence that they are “nothing but riff-raff.” A recurring theme in the epilogue of many episodes was the Addamses getting an update on the most recent visitor to their home, either via something in the newspaper or a phone call. Invariably, as a result of their visit to the Addamses, the visitor would be institutionalized, change professions, move out of the country, or have some other negative life-changing event. The Addamses would always misinterpret the update and see it as good news for that most recent visitor.

(Wikipedia)

I wish we could all live with the same conviction. When parents get frightened about autism, it’s usually because of fear for the future – will my child get married, go to school, have friends? The pressure to conform the unconformable is immense. For many years I quietly shared the same worries, although I feel my worries were more rooted in society’s acceptance of Adam. My viewpoint is shared with the more widespread social model of disability — that our modern definition of disabled is a term to describe the social barriers that make a life living with an impairment exclusive/segregated. There are naturally going to be times in the beginning of having an autism diagnosis, most-likely if we’ve never experienced disability before, that we will be thinking in terms of our own lives, how we grew up, went to school, made friends, had our first boy/girlfriends and later, maybe even got married and had families of our own. When we don’t see our children doing the same things in typical ways, we worry for them and maybe even for ourselves. The life trajectory is one that our society uses to plan every stage of our lives from how we go to school, to what we are supposed to become, to building our retirement nest-egg.

We expect to be on a path that is economically driven. We are raised to comply, to be a part of society. About a century ago, the formation of “school” was intended to prepare children for later entrance to the military. Today, we plan for our babies at the get-go with pre-school and envision them at Harvard – the ultimate preparation for a new kind of regime. We prepare our little ones for the economic march into consumerist culture. Our frame of reference for understanding is capitalist. Erich Fromm believed that we tend to categorize individuals “according to various types of status, to glorify superiors, and to look down on those who are regarded as of lower rank (e.g. persons belonging to other ‘races’) – must be understood in light of an authoritarian upbringing, which in turn is associated with other general authoritarian tendencies in the workplace and society in general.” (Alvesson and Sköldberg). That “authority” well, to coin James Carville, is “the economy, stupid.” (I’m using Carville’s words and am not implying anyone is stupid. I want to acknowledge the sensitivity I actually have when people use words that can be used violently). While resources are an issue for supporting autistic individuals, others site Libreralism as a issue as it put great stake in “liberty, automony and choice… Given the reality that some persons with disabilities will necessarily be in situations of intense dependency and reliance, can liberty and autonomy — with their emphasis on freedom from — really be the lodestars liberalism has assumed?” (Devlin and Pothier).

When we bring an autistic child into the world, we don’t fit the model pretty much from day one and especially after our children receive their first official diagnosis. We try to squeeze into charitable models for definitions of our existence, but they feel uncomfortable, placing us in (again) subordinate positions yielding to the “power” of the do-gooder/philanthropist and the “experts” in receipt of their research funds – an unequal relationship. Our families collide with ideologies that we are forced to question. Not “fitting in” is another way of describing how we are placed on the margins of society, or discriminated against. Relatively recent disability laws are made to protect us from exclusion, giving our children full citizenship rights.

Still, we struggle find such justice for them within their daily lives. We first look to school systems and are met with the red-tape of the process of getting IEP’s and special accommodations and quickly realize it’s a legal issue and process. I often wonder which “side” that law protects. We parents (I am writing as a mother so I have to assume that if you are disabled/autistic reading this, you will understand that I recognize this also as your issue) don’t count on having to fill in reams of paper applications, spending hours in meetings, navigating government support systems and administration when we are swaddling our new bundles-of-joy. The navigation to be special – not that it’s our choice – indicates from the start that we’re not supposed to be this way. Our children aren’t supposed to be autistic and public schools protect themselves from us with the red-tape, and we have to fight for our children to be included, not marginally integrated or tokenized. Most of us don’t “fight,” we become diplomatic contortionists and try to get our kids “in” to the extent we can. While it’s a worthy fight, it’s still one that we’d rather not spend our time on. We look forward to the day when autism – about twenty to thirty years behind our recongition of other disabilities, including intellectual disabilities – is widely accepted and welcomed in society. With that welcoming is also a recognition of the intersections between race, culture, gender among other interlocking connections, that make up experience.

As I let Adam go into the world, with the support he needs in order to be an equal citizen, I am always working on my visions for him as a parent. The other day, I thought long and hard about a photo I collected from Toronto’s Abilities Arts Festival a few years ago. It is a photo where two intellectually disabled parents sit on the couch with their three typical children — a “normal” family photo called “Lucky Strike.” The subjects also wrote a paragraph about how they got married and had a family with the help of their support workers. It dawned on me about Adam and his family: there is no reason why Adam may not have a family of his own, by accident or by choice as is the cycle of life for many a typical person. There is no reason why he cannot attend higher-education as an adult. There is no reason why he cannot participate in whatever he wants. It is, after all, the law, granted, subject to enforcement as well as interpretation and dominant social attitudes that are still weighted against the disabled person. We also know that not all our rights are enacted and there is a hesitancy by many families and individuals to go through the legal process. Not all universities understand the need and function of the aide worker. Although York University accommodates people with disabilities, it found itself in a legal dispute with Ashif Jaffer, a student with Down syndrome, because he claimed the university did not accommodate his needs. For these reasons, we have to keep on working hard, and likely take a few risks, for the rights of our beloved family members to be included with the accommodations that they require. This means also the help of aide workers and various technologies, among many other individualized needs.

People can have families and also be supported by others. Our children, even our non-verbal ones, can have a say in their plans and lives with guided decision-making practices. Non-verbal people may be able to type or write visual essays and participate in research about autism, and all autistic people have a right to both participate in research and have results disseminated to them in ways they can use and understand. Check out websites on emancipatory research and visual essay formats. No it’s not easy to do, but we’re starting to do it and we are inevitably going to learn by doing.

An “emancipatory” life requires support and that support requires a vision of possibility, enablement, democracy and a plan. As a paraplegic requires a wheelchair, many an autistic person requires people in their lives to support them getting to and from destinations, to having families, to making decisions, to managing the many details of life. Some of this right now is a privilege for the families that can afford them. It is, however, everyone’s right and I for one want to hear more stories about how families and autistic people are helping to let autistic people live their lives as autistic people. For the families who are able to provide the supports we seek from society and governments, we need to hear your stories in order to provide more buidling blocks of enablement.

What is independence? I can’t work on the technology of my computer on my own. I need tons of help with it. I need extra hands to help me around the house and in managing a schedule as a single mother. I need teachers, handy-men and someone to help me when I’m ill. I build my human network as a result of necessity. Others also need me and I am able to lend my hand or my special skill set. For reasons revolving around Adam, I am sensitive to our capitalist notions of independence and how that seems to relate to the family and school. Are we creating communities of people who are interdependent on each other, or human silos? How “happy” does that latter future look like sitting there all alone in them?

Here’s a future that I can see unraveling before my eyes, despite the struggles, tensions and issues we presently encounter and grapple with: I see more people employed in these areas to assist and guide, but further than this, to balance the power that can be offset by the “abled versus the disabled.” Ergo the terms “assistants and aide-workers,” not therapists. I see more effort towards emancipatory lives for the autistic, of all “functioning” levels. I see our growing ability to understand and respect one another, to honour the visual way and other modes of learning and communicating, presenting and even reading the materials by individuals with autism. It is a reciprocal human economy with autistic people in it.

For the first time since I’ve had Adam, I imagine that it might be possible, as Adam is my only-child, that I could one day be a grandmother after-all. It was actually one thing that made me a little sad when Adam was diagnosed — the world seemed to be locking its doors to us so soon. Of course, all of this is Adam’s choice, hopefully. It’s the choice that matters. The principles upon which I now imagine and locate our lives, in practice as well as principle, is one of possibility and of how our lives can be enriched, even made better, by including autistic people in them.

Adam’s life should be one of his own making, and I am here to support him down his many paths. The questions I now ask more often, are not only about how much work does Adam must do (as the onus has, to-date, largely be on the autistic person to become more normal before s/he can participate in society), but how can I help him obtain for himself not just a “quality of life,” but a vibrancy, of life — the excitement of possibility and choice — that many of us took for granted while we were growing up? This also belongs to him.

This can be our future — for our children and even for us as parents of autistic children. This is our Adam Family.

References:

Mats Alvesson & Kaj Skoldberg, Reflexive Methodolgoy: New Vistas for Qualitative Research, 2nd Ed.

Pothier, Dianne and Devlin, Richard.”Introduction” in Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law, edited by Dianne Pothier and Richard Devlin, pp. 1-24, 2006.

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I’m back at York U and have taken it upon myself to persue my M.A. in Critical Disability Studies and focusing on autism in every context I have time for. Outside of general readings, I noticed two books I’ve pre-ordered and eagerly await to devour:

Far From The Tree: Parents, Children & The Search for Identity by Andrew Solomon and Autism: A Social and Medical History by Mitzi Waltz.

“Disabilty” is a relatively new word in our language set to describe the social barriers that render some people unable to participate. It isn’t a word that we will find in historical records about disability. Rather, we find words like “lunatic, idiot, leper, cripple,” to name a few historical references to disability. While the history of disability is a burgeoning subject now, my generation never studied it in school. Some of us may not have even studied civil rights history. While we can locate histories in texts, records, art, and now through oral histories, we are just beginning to recognize that uncovering history is a very important aspect to identity. All of our histories are important and so many of them go unrecognized and untold. I remember learning British History in elementary school, and feeling valueless because my history was ignored, not validated, and considered not worthy of digging into. So many immigrants or different ethnicities feel the same way, although we have growing bodies of history that are now being taught in schools.

While autism memoirs are a way of telling our history now, we can do more to reach back and find autism in history. Uta Frith and Harlan Lane are two authors that come to mind who have written about specific autistic individuals in history.

Autism in history is a subject that requires much more attention. I’m hoping that the simple binary of “medical versus social model” of autism history will be avoided in the books about to be released. “Rethinking this polarity is what historical research and methodologies has to offer disability studies.” (Anderson and Arden Coyne).

In terms of identity, autistic identity or the identity of families with an autistic member, it is important to avoid the stereotypes of this binary that we encounter, especially in autism “advocacy,” although it would be an important a study unto itself of how we view autism today.

Our identities are complex, located within race, gender, income, nationality, culture, and so much more. We need to challenge ourselves to move away from the idea that all experiences of people with disablities, or their family members, are “conflated.” (Anderson & Coyne). History must also be viewed through the prevalent views of the time period, and we cannot impose of modern views upon it, for our interrpretations would be skewed. It’s more enlightening to look at history and compare it to our views today and in how we might improve as a society.

I hope for more literature on autism and history. I’m not of the belief that we all need to be autistic to write histories about autism but the practice of locating ourselves in any research must be something we undertake more rigorously, upfront, by stating our own views, considering our bias, and offering our biographies. I’d like to see this not only in social research, but also in medical research. We need to promote further studies to help define autistic identity. If we do it carefully and ethically, we could assisst with the rights of the autistic person in our society.

Reference:

Julie Anderson and Ana Arden Coyne, “Enabling The Past: New Perspectives in the History of Disability,” European Review of History 14:4 (December, 2007), pp. 447-57.

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Like many of you, I watched the closing of the Olympic ceremonies. Today’s notes from the ghetto weave some thoughts about the Olympics, a book, a documentary, and the Canadian Charter of Rights and Freedoms.

In a waiting room this past week, Sports Illustrated lay limp and wrinkled on the table in front of me. An title about how the games were more inclusive this year caught my eye and I read it with disappointment. There was no mention of people with mental disabilities. I didn’t take the copy of the article because it wasn’t mine, and now I can’t find it to cite. You’ll just have to take my word for it unless you can find it for me.

I wanted to write a post remarking again how people with cognitive disabilities weren’t visible or participating in the games. As much as I watch the Olympics, I can’t help but see it as a symbol of our admiration of the able-bodied. Including some disabled people in the opening ceremonies and a Para-Olympian is supposed to change that view. The “main” Olympics gets the bulk of the media attention. In talking about the Olympics, then, the media coverage is a reflection of what the consumer wants to see. I’m not blaming the athletes for being able-bodied and I congratulate everyone for their remarkable achievements. I am, however, spotlighting the acceptance of exclusion.

Today I also finished Melanie Panitch’s Disability, Mothers and Organization : Accidental Activists and read about the three mothers who worked tediously to get their children out of insitutions in Canada and close them all down: Jo Dicky, Audrey Cole and Paulette Berthiaume. I read how these women lived in a time of not only gender inequality — “busy men” on boards versus women knocking door-to-door as volunteers — but also in a trail of institutions born from the eugenics movement. The first institution in Canada was the Huronia Regional Centre in Orillia, pictured above, which opened in 1876.

Ironically, as I finished reading the final chapter this morning, I tuned into the CBC documentary The Gristle in The Stew and listened to the stories of horrific abuse of the people who were labeled mentally “retarded” by professionals. These professionals told parents to just “forget about [their] children and move on.” The government film “One On Every Street” told parents that 1 in 33 children had mental retardation and described insitutions as happy places where children would be educated and rehabilitated in the name of getting them back into their communities. Not so for Paulette’s son and others like him. Her son Louis lived in an institution for thirty years before she could get him out.

Audrey, Paulette and Jo were made to feel guilty for not only having disabled children, but were also pressured to put their children into institutions and be “good mothers” for doing so. Many families lived in fear of not placing their children in institutions because they did not have access to other services so they turned a blind eye to the abuse. There was no “unity” in their struggle, for these fearful parents criticized activists against the campaign to close institutions in Canada.

While these three mothers fought (and won) to get all people out of insitutions in the name of their children, they were excluded and marginalized as “emotional” and “trouble-makers” along the way, often excluded from participating on major boards and committees. But they did not desist. These three women managed to close all institutions down in Canada, and worked arduously for over twenty years to do so. They worked in 1981 to include the disabled who were then omitted from Section 15, which dealt with equality, and secured human rights for the disabled in The Canadian Charter of Rights and Freedoms. They won an unprecedented $1,400,000 in personal dmages for 88 former residents of Saint-Theophile in Quebec in 1990 (pardon the omission of accents that I can’t access on this blog), among many of their accomplishments. They did so as volunteers. One reviewer, Susan DeLaurier says of the book, “Disability is often viewed as a narrow field of social policy, programs and services that leads to a set of parallel social arrangements that have isolated disabled people in segregated systems. By looking at the mothers of children with disabilities and their insights and researching their activism, it is hoped that disability will be viewed as a broad-based inquiry commanding social and political analysis.”

A class action law suit of $3 billion for the plaintiffs incarcerated and abused in Institutions in Canada, simply for having a mental disability, will happen in September 2013. Listening to Patricia Seth and Maria Slark, two of the plaintiffs in the documentary, made me shudder. As a mother, I already know of gender discrimination — domestic and public as a mother of an autistic child and an activist — and there are challenges with this in helping Adam. To imagine how the “accidental activists” had to wait for so long to see their children free again, reminds me why I feel anxious so often. I feel I am always looking over my shoulder and can never rest where Adam is concerned. We have to respond when advocates for any “treatment” or “therapy” which uses the same language and logic that incarcerated innocent people just a short time ago. In the ABA movement which started in Canada in the early 1990′s many of the campaign phrases and threads of logic echo like the halls of institutions. The ABA movement was founded on the premise that autistic children would recover by age six with the treatment (and now the argument extends to older ages) and would therefore no longer require “state” funding. At the time, the estimated costs of funding an individual in an institution was $85,000 a year. In 2012, I relate to the same feelings as these mothers and share their experiences even after feminism has evolved. The challenges and the way to help Adam become increasingly complex, there is resistence and fear of progress, old arguments persist and the “busy men” still exist.

Our situation remains fragile. Despite statutes, we have not achieved Inclusion for people with autism. Society does not see autistic or other mentally handicapped persons as truly valuable to our communities where definitions of “capacity” and “productivity” seem exclusive and informed by implacable economic theory. We see it at the most basic level as in extraordinary red tape in our education system and, after all, I’m “just a mother.” Despite detailed notes and expertise about our children, the public system will hardly pay attention to it. They prefer a report from a professional using standardized tests which is an exclusive and unjust method of testing an autistic person. I talked about some of this in another post about the many ways we experience exclusion. “The briefing notes by the Community Association for Community Living in 1993 noted the same: “despite the protection afforded to people with disabilities in the Charter of Rights and Freedoms, many barriers to participation still exist in employment, immigration, education and the criminal justice system.” (Panitch, p. 145).

There is another group who tell us to “never forget,” and this same standard must be advocated for the disabled who have experienced formidable abuse in their lifetimes. When Pierre Berton reported about the abuses at the Huronia Regional Centre in Orillia (pictured above) in The Toronto Star, Berton noted that after Hitler fell, “many Germans excused themselves because they said they did not know what went on behind those walls. No one had told them. Well, you have been told about Orillia.” Now I, along with others, am telling you about echoes; of the history that could repeat itself.

The Olympics is just one more timely, everyday example of using people as footnotes and keeping them in the ghetto. It is time to include all the Olympic events — special, para and everything else, under one umbrella. I work for the day when I can witness Adam attaining his full citizenship rights. Audrey Cole wrote a Manifesto with her two lawyers called A Manifesto of the Canadian Association for the Mentally Retarded in 1982:

“The Manifesto equated how the renewed constitution established the full autonomy of Canada within the community of nations with how the provisions of the Charter of Rights and Freedoms introduced a new history for people with disabilities as valued, participating members of the community. It concluded cautiously: ‘The Charter of Rights and Freedoms obviously has very important implications for Canadians who live with a mental handicap. It is not possible to determine fully what those implications might be until the provisions of the Charter are considered by the courts in the contest [sic] of real life situations.” (Panitch, p. 133).

Audrey Cole said in her interviews with author Melanie Panitch:

“Our struggle is long-standing. It will not only continue but will gain strength with every denial of a fundamental right to any person of any age with or without disabilities in this country…Outrage, as you know, can be a unifying force for the achievement of social justice.” (ibid, p. 69).

We’re living the relay race and our work is not yet done.

Reference:

Melanie Panitch, Disability, Mothers and Organization: Accidental Activists. New York, Routledge, 2008.

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I have a comment on comments, either in comment boxes or full blog posts about other writers and bloggers. Usually I won’t write about it, but I decided to write in my own defence. In so doing, I’ve had other thoughts about the various ways of being excluded, as either autistic people, or as autistic allies.

Recently, I did a self-search on Google. I am sad to say that I get used to disrespetful commenters who seem to create a narrative about me that is unfamiliar to me. I am also delighted, however, by comments that build upon a constructive dialogue about autism and disabiltiy and how we can remove the barriers for autistic individuals. I happen-stanced upon a post from 2008 about my blog — that mostly I “get it right,” but advocate for doing “nothing” for the autistic person.

If you’ve been reading my blog since 2005 I’ve done nothing but critically evaluate everything that Adam and I have come across in terms of therapy, education, autistic/social value, and opportunities, and the lack thereof. While the nature of blogs has changed since 2005, many of which have become syndicated journalism, I’ve kept mine in journal-mode, writing about my own growth and development as an autism parent to my beloved Adam.

Adam has been in “therapy” since he’s been 20 months of age and I have reams of notes and binders I have taken to create his programs, track his progress, develop his plans. I have created his programs along with other professionals that use ABA, RDI, Floortime and other methods. I have a decade of experience of autism education and various therapies, many of them dubious. I’ve witnessed improvements in the field where I continue to have a watchful eye. I predicted that we would be forced into an ABA program, and here we are, in an segregated school for autistic children. Not that it’s a “bad” thing. I am actually grateful not to be in a system that completely disregards him, but is set up more for him. Adam, for now, is happy there and he is learning, but it’s a fact that it’s still exclusion which we mitigate with other inclusive programs.

ABA is something that we’ve had to contribute to improve upon because it’s really hard to change the system. To me it is in part a method and in part a label for a type of education that in some schools, uses other methods in addition to it. Adam and I have to “fit” into a mold and make it the best for him — those are our barriers and limitations for now. We work to fill in the gaps ourselves. I learned and taught Adam how to type…by myself — by reading, studying and consulting others who have other expertise to add. Now his school builds upon what I started. Recently, I was asked to write a book about it, and may do so after this year of finishing my M.A. in Critical Disability Studies. I have now five years of typed dialogues between Adam and myself, methods and back story of how it all began. He would never had had this opportunity had I not taken his education and communication upon myself, and I’m not shy to admit it because I hope it will become more mainstream. I am not alone in this among many autism parents. We make our own roads and other parents will share the work they’ve done.

We still work towards Inclusion, but when I made a recent query within the public system, as predicted, it ended up that Adam would be put in the “lowest functioning class” (their term, not mine). His cognition and “capacity” was determined by his limited verbal ability and results on standardized tests (which we know do not befit the autistic person as much as a dyslexic person cannot read typical text). How many students in these classes, no matter what their label, are not getting the education they deserve? Whose to decide on someone’s functioning level and “capacity” when we give unsuitable tests? Who has the right to decide who is normal and abnormal and how do semantics and labels effect people’s lives? Finally, if we decide to write off a “class” of people from the get-go, where do we end up? We are all effected, autistic or not. How we treat our collective members of society is a reflection of how we think about ourselves.

It seems there is a group of people who don’t understand (or want to set others astray) on the meaning of neurodiversity, which basically acknowledges that different people have different neurologies that make them learn and interact in the world in various ways. Myths are spun because it is assumed that if we “embrace” autistic people (some of us have been labeled “Neurodiversity Advocates” in a negative context) it will not serve their politics. I suppose, in the system we currently have which are so exclusive and politically limiting to us, we can understand the method, but I think it’s ultimately detrimental. An exclusive, “tragic” and medical approach to disability limits community membership and opportunity. Until recently, as autism parents, we have had to feed into the “autism tragedy” model in the belief that this is the only way to garner financial support and services. Despite inroads against the medical and disability-is-tragic models, there are many new parenting studies which seem intent on proving that autism causes families to break apart, which to-date, cannot be proven. This is another way of excluding autistic people and their families — by seeking something to blame, researching etiology and causation instead of spending money on understanding autistic individuals and bettering their quality of life.

If we accept and believe in our children and don’t get tragically depressed, we are written off (as I have been on numerous ocassions) as being in denial. I have been labled a neglectful parent, and a “mental case,” (a revelation of the prejudiced inclination of the autism “advocate” who stated that about me).”Those who stray from the this prescribed script [the tragic or depression 5-staged model from grief to acceptance] — for example, by not being as depressed as predicted — run the risk of being regarded as in a state of denial and in need of further psychological guidance and counselling (Oliver, 1995; Reeve, 2000; S. Wilson, 2003).” I think life is all about struggle and we have to work with it. Nevertheless, when we write publically, we leave ourselves open to criticism of all kinds. I embrace that too, but I will also take it on.

It has been challenging to write this blog for the past few years. I’m not allowed, according to some autism parents, to take joy in my son for who he is as an autistic person. My own ups and downs are disregarded if I do not publically lament in the same fashion as everyone else. I opted not to do this because I always kept my son and his community in mind. If I were an autistic person, I thought, how might I wish to be regarded? I don’t criticize others for their depression because each one of us has to take our own unique journey. I simply believe that I, personally, have to exercise a discipline in my thoughts and feelings, which is not to say I don’t have the same kind as everyone else. I have imposed this upon myself. I have always kept Adam in mind when writing publically because I believe one day he may read this. I also wish to embrace and listen to the autistic community (that is, autistic people). It’s unfortunate when others feel they have to “spin” for political reasons or their own benefit.

The other political debates and controversies lie in semantics and definitions. Words are important as they reflect our thoughts about the way in which we see ourselves. We work against traditional systems that have to-date, been oppressive and exclusive agianst the disabled. Paul Hunt first challenged what we call today ‘abelism’ (a society that favours the able-bodied), in his 1966 book, Stigma: The Experience Of Disability. He said, “We are challenging society to take account of us, to listen to what we have to say, to acknowledge us as an integral part of society itself. We do not want ourselves, or anyone else, treated as second-class citizens, and put away out of sight and mind.” (p. 158).

The Union of the Physically Impaired Against Segregation (UPIAS) was formed in 1974. They re-defined the distinction between “impairment’ and “disability” as part of their mandate to “criticize organizations control-led by non-disabled ‘experts’ for their failure to address the social barriers central to disabled people’s exclusion from mainstream economic and social activity and their lack of accountability to the disabled community.” (p.29)

- impairment: lacking part of all of a limb, or having a defective limb, organisim or mechanism of the body;

- disability: the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (UPIAS 1976z, p. 14).

This social model approach breaks the traditional causal link between impairment and disability. The ‘reality’ of impairment is not denied, but it is not necessarily a sufficient condition of disability.(p. 30).

Writing about autism as a joy, my absolute love of my son for who he is, my personal struggles without pandering to the pressure to lament in typical ways while embracing other’s need to make their own unique autism journey, is about inclusion of everyone. It begins with the fundamental acceptance and belief, however, that all autistic individuals are worthy and valuable members of our collective. It’s a necessary premise.

The social model is not about showing that every dysfunction in our bodies can be compensated for by a gadget, or good design, so that everybody can work an 8-hour day and play badminton in the evenings. It’s a way of demonstrating that everyone — even someone who has no movement, no sensory function and who is going to die tomorrow — has the right to a certain standard of living and be treated with respect. (Vasey, 1992a, p.44)

Reference:

Barnes, Colin, Mercer, Geof and Shakespeare, Tom. “Analysing Disability” in Exploring Disability: A Sociological Introduction, pp. 1-42. 1999 Polity Press.

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“It doesn’t matter who you are, or how high you rise. One day you will get the call. The question is, how will you respond?” – African American U, Senior Administrator

Adam left for camp this morning. Last week, he did well at his piano recital. His lessons have been adapted for him — colour coding left and right hands, bass and treble clef lines, to give a sense of the many adaptations we’ve learned. Not only have we adapted lessons for him so that he may learn in “typical” ways, but I also asked the teacher to let him explore the piano on his own, as well as have her play for him. I became a musician when I was very young, and a neighbour let me bang away at the keys doing whatever I wanted.

I was proud that Adam was able to attend and play well at his recital. I asked that he make his little bow, and sure, everyone thought that was sweet. Afterwards, as there was another special needs person as part of the concert, I was noticing faces as he sang — his articulation was challenged. I didn’t see gleaming “ain’t that sweet” smiles. I saw strained faces. Not until the children who were fluent with well-pitched voices were singing did the “ain’t that adorable” look beam as high as the church rafters. That effected me a lot, and I pay attention to these subtleties every day. I don’t think people realize the subversive effects of a mere countenance. I, at least, read faces well. Adam seems to pick up on vibes, but that’s my assumption after knowing him for so long.

Last week, Adam was more verbal — asking me “what are you doing?” when I was at work at my desk and he wanted to play. In addition to a successful recital and these questions, we had a “good” week. Having Adam ask me a rare question is exciting. I am happy when he gets more verbal, types on his iPad, and now, starts to ask me questions. When the camp bus came for a visit last week and Adam got upset afterwards, he typed (independently), “why is bus going?” It shows that his world is expanding by his growing ability to communicate. I find myself relieved because I think it will make his life more fulfilling, if not easier in a world that favours the able-bodied and the fluently verbal.

Two days after his verbal “spike,” however, something that comes and goes but improves steadily all the time (akin to a graph with a steady climb overall, but with monthly plateaus and slight dips), and also possibly correlating to the end of school, the transition to camp, a possible cold or allergies (get the picture?), Adam began to twitch more and he lost his ability to talk for a couple of days. He is better at being able to type a few words when he is under stress. He couldn’t do that at all before.

While I still worry, mostly if I see him uncomfortable when it happens, I’m getting better at waiting him out. Whatever is effecting him needs to be processed by him in his own way. Within a couple of days, although the twitching slowly abated. He started to smile and become more verbal after a couple of days of the most intense part of it. I really do not understand what is happening to him neurologically and neither does anyone else. Only some autistic people can give me a sense of it. There is no guru or expert or scientist who has truly “discovered” what causes Adam to tic and twitch the way he does. We know of similarities in other disabilities. Adam was tested for seizures and at least on the day he was tested, it showed negative. These are but some of the things we don’t fully understand about Adam and what we refer to as his autism.

As his mother, I’m well aware of my bias, in spite of my enduring “acceptance” of him. Bias and ideas are so deep-rooted in us that acceptance is something we have to work on every day. (Boy, would I love to read that caveat in someone’s research paper on autism). As Adam’s mother, I realize that although I love him dearly and accept him as he is, it is still difficult to resist the temptation to praise Adam’s “normal” feats and accomplishments only, and not recognize his autistic ones. Like all of us, we are under such a strong ableist or “normalist” influence that we don’t praise, cite, recognize autistic-ness as often as we need to.

We need so much more of a new kind of autism research — one that captures autistic accomplishment without sensationalizing autism. Too often any achievement by an autistic individual gets refered to as “genius.” While in some cases in may be extraordinary, we do this because we are still not looking at autism as a whole in the way we should look at all of humanity. We fracture autism into little bits and pieces as much as we end up doing people.

When I attended Autreat too long ago now (I am due for a revisit), I purchased fifteen years of workshop notes and presentations. I remember when I attended being giddy that there were workshops for autistic kids on how to make their own stim toys. Autreat, founded by Jim Sinclair, who is also autistic, is run by and for autistic people.

For months now since he started in an autism school especiallly, despite my praise of Adam for his feats, I still wonder how I can nurture his autistic-self. So I went downstairs and dug the old material up. Here’s a clue of what I wish to study more about:

How to Play With Dolls: For Kids and Adults Jim Sinclair, disability educator and consultant, coordinator of Autism Network International

For purposes of this workshop, a “doll” may be any inanimate object that we play with by imagining it to have aspects of personhood. This includes the traditional toy-human type of doll, as well as toy animals, and any other toys or objects that our imaginations transform into living entities. In this intergenerational workshop, we will share and explore different ways that autistic people can use doll play for fun and for learning, and ways that parents, educators, and therapists can use doll play to help autistic people in developing skills and understanding…”

Music: What Is It, What Does It Mean To Us, and How Can We Use It?
Katja Gottschewski, musician and music therapist, Bodo, Norway

In this workshop, we will explore different aspects of music. We will look at differences and similarities in how we as individuals or as AC’s and NT’s [autistics and neurotypicals] define and experience music. It will be discussed how we can communicate through music. How is music different than language? Can music be a bridge between AC’s and NT’s?

Understanding How Plants Can Facilitate Connection in Autistic Children and Adults
George Salamunec, HTR, COTA/L, Certified Master Gardener, Susan Golubock, M.Ed., OTR/L
Autreat 2004

Working with, and understanding about, plants can be an effective tool for developing the senses, reducing stress, and learning to make new connections in autistic children and adults. Matching plants to one’s personality and needs is an important first step. Plants provide opportunities for autistic children to explore life, nurturing, modulation, non aggressive options and choices for dealing with natural adversities, and why learning about other life (and people) outside of ourselves is so important…

Making Employment Fit: Accommodations and Other Dirty Words
Joel Smith, Autreat 2004

Employment is difficult for many autistic people. We are square pegs who dont fit nicely into round holes. Rather than forcing the autistic into a job, would it be possible to change the job to better fit the autistic? In this presentation, ideas and real-life examples are presented of how jobs can be modified to best accommodate autistic sensitivities. We will also discuss how to modify your job without alientating your boss and co-workers.

That was from Autreat 2000 and 2004. Twelve years later, I am concerned (especially after attending IMFAR), how we hardly research autistic ways of being. We usually do it framed in a bias — comparative research against the “normal,” population.

We really don’t value what makes up the true and different, “not less,” accomplishments of the autistic person. I’ve read blogs where “experts” bluntly claim that there is “no value” in lining objects up. I’m not going to target the scientist specifically here, but I wonder how many readers of this may have at one time or another thought the same thing? Other than people like Temple Grandin, how can we all study the value of object-organization and how that is transferable into learning at school and later, in the workplace? I don’t think this is a trivial skill that needs to be solely relegated to the OCD side of the human column.

Just because we don’t see the value doesn’t mean it ain’t there. We don’t understand. We are viewing under a comparative, normal versus abnormal one, and that’s so limiting. While I try to make the “least dangerous assumption,” a term first coined by Dr. Anne Donnellan, I realize that I must work to continue to see Adam for who he is in all contexts. It’s a absolute daily task and obligation of mine as his parent. I wake up every morning thinking about this, more than I pander to alarmism. In fact, next time an autism commercial brings you to tears, please ask what buttons are being pressed and why, and if there’s a better way to achieve a quality of life for us all?

I’m also reading Anne Donnellan and Martha Leary’s newly released book Autism: Sensory-Movement Difference and Diversity and I would highly recommend it. I liked especially this example:

According to Oliver Sack’s book, Seeing Voices, in learning sign in infancy he will develop brain patterns remarkably different from his ‘normal’ peers. And he will continue to develop in different ways, but we can in no way call those differences ‘deficiencies.’ He will develop different social and cultural skills. If given the most standardized IQ tests, even with a signing interpreter, he will perform differently, and possibly less well, than his speaking/hearing peers. On tests that tap the developmental experiences of deaf people he would probably score far higher than his hearing friends. Yet it is no surprise but nonetheless sad to learn that for decades deaf children were routinely diagnosed as mentally retarded. Still today, they are often considered to have diminished capacity relative to their hearing peers, even when we clearly know that they can flourish if given the appropriate education and experiences. (p. 33).

Consider that, for the deaf which we think we’ve come, arguably, to understand and accept, of how far behind we are in autism to apply this level of consideration. Think how far behind! Thankfully, a small pool (and I hope a growing one) of researchers are taking up this call. In Steven Kapp’s (et al) paper Deficit, Difference of Both? Autism and Neurodiversity, there is also a call to discover the state of autism acceptance and “potential areas of common ground in research and practice regarding [how] autism [is] discussed.”

Scientists, working with the community, can help stakeholders with competing agendas make informed choices between rights, responsibilities, and needs at personal, social, and political levels by affirming that diverse societies respect multiple perspectives.

I’d like to see us all work towards the question of how to nurture autistic strengths and learning and balancing the real need to cope in this world as a minority, as well as continuing to value autistic contribution and being in society.

A Whole Better World
Autreat, May 2000,
Clay Adams

I can imagine a whole better world,
Where people don’t laugh at each other’s pain
A world where the sun shines on every one
And one’s well-being is everyone’s gain

Must we, in fact, feed off each other?
Fool the unwary, to sell our wares?

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Review: Challenging The Myths of Autism: Unlock New Possibilities and Hope
Written by: Jonathan Adlerson
HarperCollins Publishing, 2011.
257 pages

I was more than intrigued by the title of Jonathan Alderson’s new book: Challenging the Myths of Autism: Unlock New Possibilities and Hope. In the last ten years, there have been a lot of autism books and memoirs released. My favorites have been ones written by autistic people. There are other favorites, Uta Frith, for example, Darold Treffert, who talk about autistic ability and autistic individuals in history. More recently books challenging theories about autism are receiving critical acclaim. Challenging ideas about autism indicates a massive change in the way we think about mental health and neurological difference. For my autistic son, the change doesn’t come fast enough, which is why we need more authors like Alderson.

Theories and anecdotal stories about people with disabilities, by the people who love them, have resulted in a move towards studying the value of cognitive difference. In the news recently, FRMI’s show that some people in a “vegetative state” have the same brain activity as typically functioning people when asked the same questions.  The science validates those parents who have believed for years (and criticized for those beliefs) that their children understood what was going on around them. Now fact rather than myth, the way we have treated these people has become society’s ethical question. The spotlight is turning on us.

By stating that there are autism myths, Alderson suggests that other facts exist – relative or absolute. There is not a lot of science in autism. Most of the science that exists is directed towards causation and treatment. New research is now pointing to autistic ability, not simply to cite the value to autistic people to our society, but also to derive a better education that is geared towards autistic intelligence, which society has a difficult time seeing beyond what appears to be severe disability and functioning. While Alderson is a clinician-first, and his observations are largely anecdotal, he cites this science and other examples. Mounting so many of these examples, which are supported by parents and autistic people, his points about autistic humanity and value become impossible to ignore. The autism myths Alderson challenges are those about affection (or the supposed lack thereof), rituals, socialization, scientific “evidence,” I.Q., the five-year-window, and imagination in people with autism.

Parents and autistic individuals experience lack of services and quality education because of misunderstanding and a perpetuation of myths which have misguided the treatment, therapy, and education of autistic people. Most of us are much too familiar with our daily lives punctuated by therapists and teachers only citing the deficits in order to “normalize” instead of teaching to autistic strengths. Autistic contributions and strengths, to date, have not been heralded enough because the disability can be very challenging. Many cannot see beyond it.

Alderson completed his Masters of Education at Harvard University and originally trained with the Son Rise Program in Massachusetts, although he is not promoting the Son Rise program or any other program in this book. In fact, he points towards a more well-rounded educational plan that accommodates the autistic person.

He dedicated twenty years and practice to working with hundreds of families. “The more children I met, the more diversity I saw,” he says in his book. “I think we sometimes forget that we are talking about real people, a population with a very wide range of strengths and challenges and personalities. How we talk about people with autism and how we characterize them impacts how we treat them.”

These beliefs, he states, like the myth that autistic children can’t share affection, led therapists to use holding therapies “where children are held tightly, often against their will, for hours at a time…. “Or the belief that the majority of autistic children are mentally retarded led to thousands being placed in mental institutions and pushed aside in special education classrooms.” The myths, he argues, “influence research, policy, treatment and our personal relations with people with autism, and they need to be challenged.” “Actively look for intelligence in the autistic population by removing barriers. Focus your mind and your eyes on ability,” he writes.

Maybe change is hard, and the reward too small for our educators, but I don’t think it’s a point we should give up on. My son Adam was diagnosed with autism at 18 months of age. I wish that books like these could have existed ten years ago. It would have been a much more empowering foray into the world of autism. I was one of those parents who began blogging in 2005 because from the get-go, I had difficulty related to what the “experts” were telling me regarding my son’s “lack,” which Alderson addresses in his book. They did not address the joy I felt when I was with him, or the happiness and tenderness he also exuded.

Parents need to hear what their children are capable of because there is far too much time and effort being poured into being told how deficient our children are. Millions of dollars get wasted into changing our children’s inherent nature instead of nurturing what is already there. All this money, and we ironically also have few places where our children can get an education. When children don’t become “normal,” parents can get depressed and therapists and teachers give up. Alderson quotes Carly, an autistic girl living in Toronto, who can’t speak but who types independently. Carly told a television audience, “Never give up on the children [you] work with.”

Alderson challenges the myths. Now we all need to work on redefining autism, and how an autistic person can be taught over the lifespan. I believe strongly that learning is a life-long endeavour. Our beliefs even about education ending at age eighteen or after university had more to do with getting people into the workforce in a era long past. With autistic people as well as all of society today, we are constantly learning and working at the same time. We need more talk about how to redefine the present and future for autistic people to contribute to society as they are. Also, we are just beginning to acknowledge the contributions made to society by the severely disabled, dyslexic and other disability communities. I believe the same can happen with our autistic one.

This book is an empowering tool for parents, teachers and clinicians. It is readable and accessible and may open a door that educators and others may open to provide better and more opportunities for people with autism. Hopefully we will continue our quest to understand the many attributes of autism rather than making a judgment that a difference in processing is a wrong way to be human. As myths are challenged and facts are sought through science, we don’t have to wait in order to treat people fairly.

Challenging ideas — myths  — is one of the most important endeavours of mankind. May we continue the dialogue for the advancement and successful living of all autistic individuals.

The story of Hercules (Heracles) grappling with the giant, is a case in point. Every time Hercules hurled Antaeus to the ground, he became stronger. Clearly this is what we might politely call a tall story. But maybe there is scientific logic behind it. What if Antaeus had some sort of magnet (if you don’t like the idea of a magnet, you can invent your own scenario) that made him stronger each time he hit the earth and weaker when held away from his power source? Hercules defeated another giant, Alcyoneus, only by pulling him far from his origin. The magnetic force of the earth was overcome in these examples by pulling far enough in any direction.

(N.S. Gill, Myth vs. Science, About.com)

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The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor.

I heard this term used by someone today. It is often used in ABA-speak — that every minute of every day must be a form of “therapy” for the autistic child. Some believe this is necessary because there is a belief that autistic children are not learning unless they are doing it in a way that that we can understand…measurable. This made me think of Sisyphus and the futile attempts we make in trying to normalize an autistic person.

The truth is, we take comfort in measures. Yet as I wrote in my essay/presentation The Mismeasure of Autism, we cannot hold autistic people up against the same measures as we do of people with typical people. Not all brains are wired in the same way.

For example, women have quickly discovered that when we compare ourselves to men in the workplace, or try to behave like men, we fail. In pretending to be like men, we can undergo a great deal of stress because we are working against our nature. When we are valued for the manner in which we can accomplish the same tasks as men, but in our own way, we discover that our differences can be beneficial to the workplace. Women to men are as autistic people to neurotypical ones: different and equal.

I was reminded of the contributions of those who are different from the film titled Journey Into Dyslexia, which profiles accomplished people with dyslexia. The trailer can be seen by clicking here.

During the film, dyslexic individuals describe their trauma with the education system — how no one appreciated the unique wiring of their brain and tried to make the dyslexic students learn like typical ones. I was so saddened by the life-long adverse effects this had on them.

In another segment, a researcher discusses how dyslexic individuals have unique abilities and pattern recognition and explain that our world would not be the same without such thinkers. This reminded me of the research being done which shows advanced perceptual ability in autistic individuals of all functioning levels.

It should be said that in the film about dyslexia, individuals do not appear disabled. In autism, this isn’t always the case. While some individuals do not physically appear different, others are distiguishable by their various eye-gaze, facial expression, gait and idiosyncratic body movements (which serve most often to regulate or feel the body in space), referred to as self-stimulatory behaviour. I thought to myself that in our (still) disabled-adverse society, it is easier to accept dyslexic people, that is, sadly easier to accept people who do not have any obvious appearance of disability. Yet, dyslexics did not always have the same recognition and status. Dyslexic students were labeled and marginalized — called stupid — and not much was expected from them in the future.

Time changed that. Studies of the brain and achievements and activism by dyslexic individuals changed it too. So I had to wonder, as I always do when I watch such movies, why it is taking so long for the autistic community to receive such recognition and access? There are scientific studies that demonstrate advanced perceptual abilities, patterning skills in autistic individuals despite the labels of “functioning levels.” There is anecdotal evidence that autistic individuals are exceptional employees — reliable, honest, able to do detailed and repetitive work, and perhaps even able to design world-renowned facilities (think Temple Grandin).

Still, we as an autistic community (meaning parents, researchers and autistic people) tend to discount the mounting evidence. While I don’t wish to go into yet another lengthy about high and low functioning labels, but I will reiterate that they are unreliable in determining intelligence levels. Not all intelligences can be measured the same way, as demonstrated by many of the neurological differences which now have labels out there. This is also explained brilliantly in the film.

We can learn from our fellow disability communities. We can turn to ones, like the dyslexic community, in learning how to advocate for autistic individuals. We can definitely acknowledge that it is natural for the human speicies to have differently-wired brains and that these “different” brains are integral to the survival of our speicies (watch the movie for an advanced argument on that point).

That is the reason why the idea that “every minute should be therapy” for the autistic person is a form of discrimination. Underneath the premise is the idea that autistic people need to learn and act like those who are different from them. I cannot imagine the anguish of that experience, and every day I try to feel what Adam must have to go through and what he may come to say of it when he grows older.

Before the hyper-programmed generation (that is, my generation), we had many bored moments when our parents let us figure out what to do on our own. We stared at clouds, talked to ourselves and created laboratories out of our mother’s cosmetic bottles and the contents therein. When I look back, I remember creating many imaginary worlds. Adam’s chatter is considered abnormal to many behaviourists, although I’ve never stopped him. I’ve now learned how valuable that self-chatter is to autistic children for language acquisition.

Compare the way we let typical children play to the existence of the autistic child today. It is said that autistic children can’t learn on their own, let alone imagine, without our intervention. Autistic free time is not valued. Autistic nature is not valued. Autistic learning is not valued and the autistic person is more often than not, underestimated.

I tend to use the story of how Adam taught himself how to read and count in an argument such as this. A more recent example I would use is how he has taught himself how to search for what he wants on the computer. You see, those are the things we see and measure, but I wouldn’t be able to determine how he came to do it. I can’t measure the exact process he went through. I can wait until he is able to explain some of it to me, unscientifically maybe, and I am certain now that he will as his verbal and typing skills catapulted again this summer along with his long days in the fresh air.

If I had turned each and every one of Adam’s minutes — nay existence — into “therapy,” not only would I become completely exhausted and dismayed, but I’m quite certain that Adam would not be has happy and as well adjusted as any young autistic individual can wish to be. He will have his complaints, I am certain. He is up against so much more than I have ever been.

I am thankful for my attitude of late and for the balanced approach that time and experience has given us. It is not always easy to maintain this attitude consistently in our community where autistic children are not taught to their needs or potential, let alone accepted into many schools and taught well. For many autism parents, it is the fear of the future that is the driving force behind the idea that every moment needs to be a therapeutic one. I completely understand that fear.

It is in these very moments when we need to turn to autistic adults and call upon all of our autism societies to spotlight the achievements of autistic individuals of all functioning levels, and their contributions to society. In autism we have Temple Grandin, Vernon Smith (Nobel Prize Winner), Stephen Wiltshire, Daniel Tammet, Donna Williams, Michelle Dawson, Matt Savage, Amanda Baggs, Larry Bissonnette, and so many more autistic contributors. In so many of their stories, we have heard how they have learned and achieved by virtue of their autistic brains and societal accommodation, not from minute-by-minute therapy.

We should do everything to celebrate the achievements of our comrades, as this will enable better services and accommodations for the next generation of autistic people to contribute. If we do not stand up for our own community, what chances will our children have to prove themselves? What chances for acceptance?

Everyone has something to contribute.

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Below is a reading from my favourite author Milan Kundera excerpted from The Unbearable Lightness of Being.  It would have made (and now makes) an appropriate accompaniment to my essays of several years ago titled The Economy of Pity and The Mismeasure of Autism — the latter which was included in Wendy Lawson’s book Concepts of Normality: The Autistic and Typical Spectrum:

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“Before you break something apart, it helps to know how it hangs together.”

 – a quote from SEED magazine regarding art and science and the contributions art can make before distilling the neurological nature of being human.

It helps to know what makes a marriage or relationship hang together. The manner in which we build a union between two people can be pinpointed from the moment it begins. Over time, I’ve come to believe that strong foundations for a relationship are built on honesty, sharing, trust, communication, respect, personal character and commitment. These attributes become ever-more important when we decide to start a family. I might suggest, as a woman with some experience, that a serious review of some of these attributes in ourselves as well our partners, and an agreement of some kind, is of prime importance before starting a family.

Instead we get swept up, probably because most of us are young, in the idea of what a marriage should be instead of looking at the practicalities of construction. Naively, we come to believe that having a baby is romantic and naturally, all we want to do is proliferate the romance. In an age where we are encouraged, and should to some degree, go with the flow, we may have swung too far. Perhaps we do not consider our partners in construction carefully enough because it seems too “business-like.” Yet real life seems to be that fine balance between the two. As the saying goes, all we have at the end are the relationships we’ve built, and might I add, maintained. In a society that values Individualism, it seems to me that many of us have forgotten that it takes a community to not only raise a child, but to also sustain us as adults, so we better be paying attention to how and what we build. As Thoreau said, “build [those] castles in the sky…” but it helps to place the foundations under them. It behooves us to try our best to ensure they are strong.

Let me clarify here that I am a woman writing in retrospect as I am now a single mother of an autistic child. I’ve seen that when relationships fall apart, we blame it on other things. No matter what, external factors will impact a life and a marriage — illness, disability, death and other unfortunate occurrences. We hear it in the marriage vows (for better or for worse, in sickness and in health), yet it seems few of us care to consider the meaning of those words which, in my view, can apply to our friendships and other types of partnerships. I mean, no one can really scoff at those marriage vows even if one doesn’t believe in the institution. We all want someone to see us for who we are, and to love us until the end. Yet, sometimes the two people who came together with the best of intentions cannot endure the stress and do not function well as a team when challenged. In an era of extreme autism fascination and fear we can be ultimately challenged. As such, it is also assumed, and often written, that autism is a main cause of divorce. The unknowing, innocent autistic child is then targeted by society as a result, and it is yet one more reason added to an exhaustive list of why we must cure and change the autistic child as quickly as possible. Instead of considering that all children are a test — that in fact, all of life is one big test — we yet again blame the autism.

I have always found the idea of blaming the autistic child for the deterioration of marriage as something unfair to autistic people. Yet, when my own marriage ended, I couldn’t help but wonder if any of those ideas behind the eighty per-cent divorce rates and autism might even in some small way be true. There can be more stress because our children have atypical needs that are not easily accommodated in our communities. In North America, we are still in the process of legislating what the rights of disabled (including autistic) people must be. We have acknowledged that the rights of autistic people are about thirty years behind of how we regard and grant rights to people with other disabilities. In other words, there is still a journey ahead.

As a parent also living in an age when governments do not understand autism and the accommodations autistic people need to contribute as autistic people, there is more stress when we have to fight to get our kids into schools, obtain financial support, acquire respite help, augmentative communication devices, social skills and vocational training and later, appropriate housing accommodations, access to community colleges and universities with aides and supports that allow our adult children to continue to learn and contribute. By default, we’ve become activists, advocates by no choice of our own. Daily, in some way shape or form, we always seem to be negotiating prejudice in order to get our children and our families what they need. Yes, it can be exhausting in the beginning. I believe all parents need to pace themselves for like life, the journey is long.

I’ve heard that some spouses complain about mothers (let me clarify that the bulk of writings on the topic seem to address the mothers) who take on such a role. “If only the child was “normal,” then the mother would be able to attend to her husband more often. I’ve also heard single moms of more than one autistic child claim that their entire identities are entwined in autism, and as you can see from the laundry list above, it is with good reason. Further, some families that are mixed with typical and autistic children also seem to experience more stress because the autistic child is held up against the typical one and there might be some unhealthy comparisons. As a mother of only one child, I have to consider that some of my stress may be alleviated by the fact that I know of no other way to live. I have no other child to compare mine against. I consider this one of my many blessings.

It might be true that some husbands (and this can also apply to mothers, I do not wish to target husbands, so let me clarify this here even if I do state either “fathers” or “mothers”) do not care to participate in the intensive initial learning curve of raising an autistic child. It is true that some partners bail and leave the brunt of the work to the mother. It is true that in the first years after a diagnosis, and in our new age of autism fascination and fear, autism required a lot of reading, research and self-enquiry. Yet, life evolves, our children mature and we move beyond that “crisis” phase. One can only hope that our partners will hang on until we get there. Still, blaming the mother for the failed marriage is an old idea — we’re either as cold-as-ice- Bettelheim- Refrigerator-Mothers or we are terrible wives. Misogynistic ideas flagellate us and the ideas run so deep they are tough to beat. While there are single mothers truly struggling and are in need of respite, access to services and financial support, I also suggest that these are the caregivers who should be at the top of the list for such support. For after all, it is true that if a mother does not explore herself and her own needs, she will not be able to give herself to her family.

I also think there are all kinds of mothers, those with special needs or typical children. Some are the ones always carpooling, always talking about their children at social functions — forgive me please if you are one of them for it’s your right, but it’s just not my style. Although I spoke a lot about autism in the early years as I tried to figure it out for myself, and I often write about my son on my blog, I do not always wish to talk about him or about autism and I never wanted a bucket full of kids. In short, I’ve seen more women of typical children get so caught up in their motherhood roles that I find it so ironic that mothers of autistic children get blamed for failed marriages because we get so involved in our “autistic” children’s lives! Indirectly of course, the autism, or autistic child is also blamed. In all of my years I’ve tried to always enjoy my passions, even if I’ve had to sometimes put them on hold at various points in my life. Even while my autistic child is a huge source of happiness for me, I recognize that in order to be a good mother, I have to explore and live my own life. I believe that by being my non-super-mom (hence the lack of carpooling) very basic self, I am setting a good example for my son. Mothers of autistic children are also professors and other professionals with successful partnerships and marriages and others are struggling to care for the children on their own while trying to make ends meet. Like everyone, we are also a diverse community. No matter where we are at, finding the balance is an art we seem to always be working at.

A new study debunks the incorrect divorce rate and some of the assumptions that we have mustered that belong to the myth. Dr. Brian Freedman of the Kennedy Krieger Institute found that a child’s autism “had no effect on the family structure.” In fact, he found that 64 per cent of children with autism belong to a family with two married biological or adoptive parents compared to 65 per cent of children who do not have ASD. Freedman’s study acknowledges that parenting an autistic child may be more stressful and it may put pressure on the marriage, which he found in past studies. As I looked back to reference this, I found one executed in the Journal of Autism and Developmental Disorders (Vol. 19, No. 1, 1989): Brief Report: Psychological Effects of Parenting Stress on Parents of Autistic Children (Wolf, Noh, Fisman, Speechly). What was noteworthy to me in this study was an assumption that parents felt that their own personal goals were delayed or forfeited (Kohut, 1966), disappointments with delayed developmental milestones (Howard, 1978), worry regarding future self-sufficiency (Wing, 1985; Wolf & Goldberg, 1986), and the unpredictable, ambiguous nature of autism as important sources of life stress that impose physical and emotional strains on parents exceeding levels experienced by parents of normal children (Bristol & Schopler, 1984; Korn, Chess, & Fernandez, 1978). Freedman seems to have used these assumptions when citing that parents of autistic children suffer a greater amount of stress than parents of children with Down Syndrome or typical children; that mothers report more depression and fathers deal with stress by distancing themselves and becoming less involved with the family. (Source: Kennedy Krieger Institute).

Yet, in an analysis of the National Survey of Children’s Health, data showed that other factors can contribute to divorce, “such has having a child with particularly challenging behaviors with and without autism [bold mine]. For some families, the challenges of parenting a child with special needs may indeed result in straining the marriage to the breaking point.” Freedman wishes to conduct more longitudinal studies to find out how relationships can survive such stressors and what factors may enable the successful marriage. Alison Singer, founder of The Autism Science Foundation agrees that it would be helpful to find the “net stress reducers,” for families, noting also that the 80% divorce-rate myth may have added to our stress as parents and marriage partners.

It might help to add here that Canadian researcher Lonnie Zwaigenbaum in his paper A Qualitative Investigation of Changes in the Belief Systems of Families of Children With Autism or Down Syndrome (Child: Care, Health and Development, 2006,32: 353-369) concluded that families with autistic and Down syndrome children resulted in a reconstruction of values, expectations and actually added to a sense of overall happiness and joy. His team noted that most families believed that their children improved their quality of life. I will concur. Having an autistic child, even with the challenges, has brought me down to earth and made me appreciate many more aspects and people that are currently in my life. My son Adam has been my most profound teacher in helping me see not only the realities of life, but in living with them to the best possible degree.

Still, I thought it really important to discover why so many people believe that families with autistic children in them, are subject to higher divorce rates. They seem to be based in our beliefs and fears, whether they are real or not. We are told many negative things when we first hear the word autism and the idea of having a difficult marriage is not a welcome message. As a single parent, I also have to consider what of those negative messages permeate societal thoughts and the potential for future relationships as society (and potential partners within it) believes that life is so hard for us that we do not have time for the pursuit of happiness.

We learned the extraordinary lengths we would have to take to help or “cure” our children — the strain on our financial resources and time — but the future, even with such investments, looked uncertain. When I consider stress, I have to account for some of the images I have had in my own journey, particularly the early ones. Thoughts like: thwarted dreams, a curbed schedule, shiny white hospitals with fluorescent lights, and spare cots (as seen in the neglected institutions of the 1960′s) popped into my head as I lay putting my autistic son to bed, his hair still baby-soft and face so sweet. The images did not fit with my reality, yet, I wondered how these haunted thoughts would effect the way I dealt with my son. Those images collide against the perfect Hollywood glam of serial daters and spouses with their perfectly coiffed children in gleaming black limousines. Let me quickly add that you will find me often blaming Hollywood for our warped self-images.

By taking a serious look at these narratives and images, it is possible to come back down to reality and back away from feelings of doom. Not only do I know my marriage did not dissolve because of my autistic child, but I became interested in the underlying fears that may prohibit some people from believing that future relationships with autistic children are possible. In other words, I think there is a correlation between our idea that autistic families must have higher divorce rates because,

- we believe we suffer more stress because we feel we devote much more time to the autistic child than the neurotypical child, possibly without considering the issues that many typical children have that can also put a strain on marriages and the outcome of all children is uncertain;

- we have automatically concluded without further inquiry into our belief systems, that single parents of autistic children have it tougher and therefore have less time for current or future relationships (as compared to families with typical children);

- and that our historical view of the disabled as asexual non persons is inherited in how we view ourselves as parents and human beings.

The stigma facing the disabled community still lingers. We see a person with real physical or cognitive issues, and a slew of ideas and images cross our minds. I find it helps to always catch myself in these moments of thought and question the immediately. It’s not that most of us really know anything about the disabled person’s life, for many of us have never had a family member or lived with a disability. History continues to pulse through our veins and when we view disabled persons, we think of institutions, hardship and poverty — not the typical attractive traits we think of when exploring sexual relationships.

In autism in particular, we are all too familiar with the head-banging narrative. It was the first thing we envisioned when we heard the word AUTISM. Whether our children were diagnosed at the age of two, three, four or beyond, that very word altered our perspectives of both our children, and our futures. I can think of no image associated with a word more powerful in my lifetime. It takes so much time and self enquiry to unravel the fear and begin to find that balance again. In addition to unraveling and reconstructing our expectations for our children, we need time to discover what we need as parents to live a full and “balanced” life. As a newly single parent who has spent two years thinking hard about this, I can think of nothing as important as taking care of myself and having an important relationship (one can be happy being single — everyone has to find their own path, of course) as not only setting the right example for my autistic child, but for my own happiness which is as much as my right to have as it is my son’s.

It is said that the most successful people in life are the ones who are most adaptable. We are put to the test time and again. We try to build strong foundations and sometimes the end result doesn’t turn out the way we expect. So we keep trying. I’ve given myself some space and time to create a positive atmosphere and peace around myself and my son. This painful time has been precious and with every day comes an awareness that life is neither perfect nor predictable. We cannot predict the outcome of the autistic or the typical child, as much as we would like to think that we can and for that reason I believe things are meant to fall apart so we can rebuild them again with more wisdom and a healthier outlook. I share this story in hopes that we can all exchange our experiences and become a little wiser. Today, we are so fortunate to have the benefit of more autistic adults showing us what they need to contribute to society. We have more positive examples to live by and this by its very nature gives parents more hope. I find it quite relieving to see that there is a sort of “normal” path of autistic development. We are made more aware of the stigma that influences our thinking and can choose to move away from it.

The outcome of divorce and lack of support can fall on single parents with all kinds of children. Yes, autistic children need more support in a world that doesn’t value them as they are. In a recent conference called Autism, Ethics and Society, based in the U.K., the introduction to the sessions read: “Autism is a common [italics mine] neurodevelopmental condition that has dramatically captured attention in the last decade.” While there is much concern about further stigma regarding genetic testing and other scientific discoveries, there is comfort in common-ness, commune and community. Might we be coming to a new decade where autism isn’t as scary and we as parents receive more moral and practical support (like getting into schools), that ease the mental stress that seems to going along with both marriage and single parenting? I definitely believe that along with new people that will come into our lives, this is the new frontier for Adam and myself. At least it’s my castle in the sky. I’m in the process of rebuilding the foundation underneath it.

—–
A little postscript today: After writing this, I received a note from Adam’s camp counsellors describing him. It says, “Adam brings charm to the senior 24 group. Like the gentle Snorlax Pokeman, he maintains peace with everyone and shows a love for nature. If it was not for him, we would have never found all the golden eggs.” All I can say is….exactly.

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Using the title from Kat Kelland’s article in today’s Globe and Mail, she suggests that experts are worried that, with the extended array of defined disorders in the soon-to-be-released DSM V (Diagnostic and Statistical Manual), no normal person will continue to exist.

“Citing examples of new additions like ‘mild anxiety depression, ‘psychosis risk syndrome,’ and ‘temper dysregulation disorder’…many people previously seen as perfectly healthy could in future be told they are ill….’It’s leaking into normality. It is shrinking the pool of what is normal to a puddle…

Dr. Wykes and colleagues, Felicity Callard, also of Kings Institute of Psychiatry, and Nick Craddock of Cardiff University’s department of psychological medicine and neurology said many in the psychiatric community are worried that the further guidelines are expanded, the more likely it will become that nobody be classed as normal anymore.”

Well, it’s about time. Perhaps ironically, I’m not one for self-help aisles and a belief that we all suffer from some made-up ailment that can be remedied with expensive quackery. At the same time, I also understand that there is a widespread concern that if we simply dilute human differences and challenges we do not address serious  medical and practical needs. In other words, some people fear that a complete distillation of humankind will take away much needed work towards attaining the services, medical attention, and accommodations that we continue to need in order to replace the treacherous world of asylums. This article in The New York Times, cites some of the other concerns specific to the autism diagnostics proposed for the new manual.

What the Globe and Mail article assumes quite simply, however, is that there are only two kinds of people: normal and abnormal. We know that in history that it is this whitewash, this binary, that is the most dangerous because it has  subjugated individuals with differing needs, thinking ability and functioning levels to not only the margins of society, but to maltreatment and exclusion of all kinds.

Until  recently, disabled people have had no rights. Still today, seen as non-persons despite legislation and the ADA, disabled and autistic individuals continue to struggle for their right to have a voice at policy-making tables, and to be accepted and accommodated for their needs while contributing as autistic and disabled people. Not a day goes by that the notion of cures and getting “better” (that is “more normal”), underlies the purpose of teaching autistic people at all, as opposed to teaching them to their strengths and abilities as well as with a regard to the value of autistic contribution.

As a committe works to redefine the characteristics of autism, the questions that the committee ask in the panels are well worth reading.  I cannot help but wonder how getting an autism diagnosis may change for parents and autistic people, and consider that the future could be brighter. In my view, we seem to be asking some of the right questions with regard to the spectrum of autism and the fallacy of the association between intelligence and functioning levels. So I guess I’m saying that as I read the Globe article this morning, I was sort of nodding my head. Yes, there is no normal….that’s right. Why fear that? What is it that we must do and how must we think differently in order to finally obliterate that binary?

It is here that  I have to refer to Wendy Lawson’s book Concepts of Normality: The Autistic And Typical Spectrum (Jessica Kingsley Publishers, 2008). In it she states,

“Currently the debate about ‘what is normal’ is causing some heated exchange; this is not new. In particular the debate concerning autism, disability, neuro-diversity and typicality poses some ongoing challenges. Disability presents itself in a variety of ways, and for most of us living with disability, who we are is normal for us. For many people on the autism spectrum, which is certainly very disability in a world that does not accept, value or accomodate ‘difference,’ being handicapped is an everyday reality…Having a respectful understanding of one another should include accessibility to appropriate resources, support, safe places and sincere appreciation of difference. Anything less is not acceptable.” (Introduction)

Recently, Thomas Armstrong released his book, Neurodiversity: Discovering the Extraordinary Gifts of Autism, ADHD, Dyslexia and Other Brain Differences, (De Capo Press, Cambridge, 2010). In his first chapter “Neurodiversity: A Concept Whose Time Has Come,” he has cleverly quoted Margaret Mead:

“If we are to achieve a richer culture, rich in contrasting values, we must recognize the whole gamut of human potentialities, and so eave a less arbitrary social fabric, one in which each human gift will fall into place.” (from Sex and Temperment in Three Primitive Societies).

Thomas goes on: “In 1952 the first edition of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association listed one hundred categories of psychiatric illness. By 2000 this number has tripled. We’ve become accustomed as a culture to the idea that significant segments of the population are afflicted with neurologically based disorders such as ‘learning disabilities,’ ‘attention deficit hyperactivity disorder,’ and ‘Aspergers syndrome,’ conditions that were unheard of sixty years ago. Now, even newer disabilities are being considered for the next DSM in 2010, including relational disorder, sexual behaviour disorders, and video game addiction.”

“How did we get here?” Thomas asks. He cites things like a greater knowledge of the human brain and research into the area, a growth of advocacy movements that push for “awareness,” (alas, is it no wonder why most of us shudder at “Autism Awareness Month?). Mostly, the need for the advocacy marketing plan is the way to raise money for things like remedies and therapies. No family wishes to envision their children in asylums and mental hospitals (another topic because they were set up with all of the good intentions we have today for many of our “centres,” but ended up so overpopulated that the patients within them were neglected and abused). While there has been a valid reason for advocacy movements, perhaps an acknowledgement that all humans are interdependent and need different supports (no matter the severity of their handicaps), may be a very welcome change.

While we keep tripping over the question of what is normal, I wonder if we need a supplementary manual that cites abilities, suggestions for inclusion, education, and the like.  Perhpas we need not define handicaps as disorders, but very real challenges and acknowledge them against the social stigma of having any kind of disability. I have to question that if the stigma didn’t exist, would we also be a society that tends towards over-medicalization? For I do acknowledge that heading into a doctor’s office these days one wonders why so many meds are offered so readily for what I feel to be the way in which we respond to life — anti-depressants and meds like Ritalin come to mind.

To me, this need not be a question of what is the right or the wrong way to be human, but how to support all ways in which to be human. A DSM can only do so much. It is up to us to ensure that we cultivate the society that treats and regards each person individually, for although we are united in our lack of normality, we are also unique. It’s a complicated matter indeed, but in the end, all we wish is to be seen and loved…blemishes and all.

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Here in Toronto, I sit on Inclusion Committees. My son has been included in a Montessori classroom but we are going to leave after June. The school gave Adam loads of acceptance and enabled him to bring his aide, his adapted programs, his computer laptop and the like. The school was wonderful in that it was a calm environment that had concrete Montessori materials for him to use.

We had to adapt his program, ourselves, while staying within the structure of the classroom. He worked alongside the other kids and the other kids loved him. He learned how to engage with them and they learned how to engage with him. It was very important at the time we made the move to a Montessori school that Adam be with peers and be able to learn to tolerate them, the noise, and being able to play and learn with others. It was the right move for him. My wish is that schools would provide more education about people with disabilities: how to be more patient, tolerant and accommodating, and there are programs in Toronto that are attempting to achieve such goals. Last night, I attended Inclusion Awards night in Toronto and spoke briefly with The Honourable David Onley (Governor General of Ontario) who is himself disabled.

It was a successful experience and I have to admit, we’ve not had any problems with our school choices like so many other families who must endure the public school system, the IPRC process and assigned E.A’s. In addition, too many “special needs” schools ironically turn down autistic children with behavioural challenges or children like Adam, who have difficulty talking. I understand that that is very difficult, heart-wrenching and it seems we sit on pins and needles waiting to see if we either get the luck of the draw or if we have to endure another heart-wrenching process as I have also been privy to it. This is the most unjust process I can think of as no child should be turned down from any school, let alone the “special needs” schools, but this is the reality right now. Here in Ontario so far, Inclusion is only as successful as the person who is leading the process within the school. A teacher is only as good who understands the child as a unique and whole human being, and is willing to go the extra mile. But for those of us who live through this daily, I’m not saying anything new.

Although I am thankful for our successful early years, our weekends were left struggling to find play-dates from many of these children. Adam always gravitates to the other students with special needs anyway, so it became easier to enroll him in social programs for special needs children. It’s a common story: like attracts like. We feel more comfortable with the people who may understand us and with whom we may understand, and we have to allow room for all of this in the Inclusion process. Adam’s school was a brilliant jumping board for Adam to graduate to the next level, so he will be attending a school that will be able to accommodate his learning needs more appropriate to his new found curiousity. Or so I’m hoping.

Inclusion is nascent in the Toronto community. Still, there are attitudes to hurdle, not to mention a reluctance to invest time, money and training, perhaps because these attitudes are not really up-to-speed. If a question I received yesterday from another parent with a child with another disability was any indication (“is your son violent?” ),one may begin to understand the many general assumptions that exist out in the world about autism and wonder if fear is the biggest barrier to Inclusion. I certainly don’t blame anyone for asking such questions — there are people with many challenges out there. Adam is not violent. He is affable, social (for an autie — he just does it differently but often craves being with others even if he may engage in the “Adam way”), and he wants to learn, even if he struggles with what appears to us like distraction (or should I rephrase that and say it is also us as the parents and teachers who struggle with it because it challenges us to have to learn and see the way our children might?). Adam is talking more now and he was approved for a new device which will enable him to communicate even more. He is bright, able in so many ways. He has a handicap in a world where his style of being is the minority, mind you, but this doesn’t stop him, or me, from moving ahead.

This is the first year I’ve engaged Adam in more special needs programs — for social skills, life-skills and general leisure. He is still Included in a “regular” summer camp, but Adam now needs a different kind of support as he grows into the world. I am very happy for him that he will be gaining these new skills and looking forward to his ability to help others, as I believe it is crucial in life that we all find our areas in which to swagger. In fact, as I’ve sat with it for a few days now, I’m thrilled. I still have no doubt that he will be able to do contribute and go on to further education in his future. It’s not an outrageous expectation: I’m basing it on the person I see in front of me who is utterly capable and who is a privileged boy in that he is being given two healthy, willing parents who enable opportunities for him in his life. I still work in Inclusion because I want to see more opportunities for Adam by the time he reaches his twenties. We have to work at all angles — both in Special Education and Inclusion. The trainings co-exist and are not exclusive of each other.

This lead to another thought I had this morning as I still read the many pleas for money for “Early Intervention.” I wondered why, after I’ve come so far in my own thinking, the term still bothers me to the extent that it does. So here’s my answer: Adam doesn’t need intervention. I may be lucky that Adam is an only child as I have nothing and no-one to compare him to except for my own childhood. I figure we have made our own normal. Our weekends are full — yes, we do visit friends and other children, we have programs to attend, concerts and plays to see — and yes, these have to be pre-planned (but then again, what family doesn’t organize a play-date?). No, I cannot drop him off and leave him alone in someone else’s house yet, but like all things Adam, he will do things his way and his own time. I could sit here and cry and bemoan that fact that he is not doing all of the “typical” things other boys his age might do, or imagine that he is somehow lonelier for it. But is he? He has no siblings to compare himself to. He is competent in our home, a burgeoning artist, musician and cook. He enjoys other children and will likely gain a long-time friend when he is ready. Like myself as an only-child, he has learned to entertain himself or play with me or spend time with his grandparents or much older half-siblings when they return from university. For us, our normal was early engagement and we grew into acceptance. For certain when Adam was two years old, I believed all this engagement would make him more “normal,” whatever that meant to me at the time. Six years later, I can see that our life is normal. It is normal to us and aside from our personal struggles recently with life transitions, I really love our life. I figure that one of the many gifts I might be able to give to Adam is my belief in this. All I have to do to believe it, is to let go.

The idea that one has to intervene still suggests that something is wrong. The other day, my best friend’s niece was on the A&E show called Intervention. Amy suffers from aneorexia/bulimia and is in serious trouble. The family asked for the show’s help in getting Amy the help she really needed. If not, Amy would die. To me, this is the seriousness of that word Intervention: it suggests that something is seriously wrong and is akin to the analogy that autism is like “a fate worse than cancer.”

It is not. Autism is our normal. Autism simply means that I needed to engage differently at those early stages of growth, not employ the tactics of early intervention. I wish I had had someone to tell me this when Adam was first diagnosed as it has taken me time to grow into my thoughts and words. Adam was not ready for the forty hours of ABA that was suggested back in those days, and we all know that even with all that ABA and all those promises, our children are still autistic.

When I hear parents complain about autism (see this blog on Kim Stagliano and her recent tirade on blaming autism for Aiden Johnson death), I can feel myself being sucked into a vortex and I do not see how that helps us become better parents to our children. Yet I suppose if certain parents truly feel empowered by believing autism is like cancer, if that gives them some kind of hope as the walks, marathons, runs do to defeat disease, then they will work and talk hard. They will use fighting-words.

I am of the belief that by fighting, one is defeating the child, not the autism. I am of the belief that by attacking the child from every angle like a huge dose of chemo sends a message to that child with a different perspective and manner of engaging in the world, that THEY are wrong. I see autistic children as they grow older with those beliefs surrounding them, absorbing the idea that autism is a disease and that “they are more than their autism.” What does that mean other than a denial that autism has truly effected the way one perceives and engages with others and the environment? Why not be proud of that and learn ways to take advantage of it?? I’m so sad to see parents fight so hard and then become so despondent.

I propose that while we are changing schools next term, that we again look at the terms we use. Had I intervened with Adam in an aggressive way, I truly believe he would have regressed into himself and perhaps with more aggressive behaviours. Instead, I propose we act gently. We have to challenge ourselves everyday with the notion that there are many kinds of normal in this world and while the world may not yet totally get it, it is through our use of terms and our actions that will enable the rest of our communities to jump aboard.

I am very uncomfortable using the term early intervention for assisting autistic children. I believe we have to work to change not only our attitudes, but our terms have to catch up. Perhaps we can use terms such as early engagement and early promotion of the different forms of play that we can engage autistic toddlers in the same respect and presentation we promote play for typical toddlers. Of course, the earlier we can do this, the earlier parents may be able to accept their autistic toddlers, and this supports everyone.

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Review of Committed: A Skeptic Makes Peace with Marriage, Elizabeth Gilbert
Reviewed by: Estée Klar

I’m a separated single mother. Last night, having dinner à la Sex in the City with my three long-time girlfriends, I realized that I am the only truly single lady at the table. My girlfriends may have had the recipe for relationship success right all along — they never, ever got married. They may be single, but they are all in long-term committed relationships.

This is not to say that I’m against marriage now just because I am separated, but since I feel I have not yet been successful, and in fact — let me borrow Gilbert’s own words –  “gutted” by the entire process, her new book may have come to me in the nick of time. Perhaps not just for me. Judging by the hot topics of discussion out there — like “All Kinds of Families” upcoming on television with Rosie O’Donnell,and the hit HBO series, Big Love, and Desperate Housewives, well, Gilbert definitely knows what is on our minds. So long Ozzie and Harriett, Little House on the Prairie and Leave it to Beaver; these times…they have changed!

Gilbert acknowledges that she is no scholar of Western marriage, but her research makes us rethink our beliefs. Woven in between her own personal journey — falling in love with Felipe at the end of her Eat Pray Love journey, living with him on his three-month visas into the U.S. and vowing never to marry each other –  we learn a little bit more about her and how and why we think such things about finding soul-mates and marriage partners. “Sentenced to marriage,” because her partner Felipe will finally be deported out of the United States if they do not marry (no more three-month visas allowed), Gilbert decides to research almost out of terror. She has already been divorced. She has no children. She writes, she travels. She seems to covet her freedoms. But she has also fallen deeply in love with Felipe.

So she embarks on her next quest which manifests in this newly released book. Expecting the world from our partners to “make us eternally happy,” she cites an important, maybe crippling, contemporary theme — that the only quest worthy in life is to find happiness. “It’s the emblem of our times,” she says. “I have been allowed to expect great things in life. I have been permitted to expect far more out of the experience of love and living than most other women in history were ever permitted to ask. When it comes to questions of intimacy, I want many things from my man, and I want them all simultaneously….We Americans often say that marriage is ‘hard work…’ but how does marriage become hard work? Here’s how: Marriage becomes hard work once you have poured the entirety of your life’s expectations for happiness into the hands of one mere person. Keeping that going is hard work.” (p.48).

Of course, Gilbert can’t be excluding the same expectations of men who stake their happiness on a woman. Honestly, if I were to wager an un-researched guess, men have more difficulty in our culture being without a woman than women do without a man. If it’s a popular topic of discussion of our times, it does not belong exclusively to women-kind. But she does note that her father seemed to have fewer expectations of his 1950′s marriage than her mother: “…while it’s true that my mother has given up more of her personal ambitions in marriage than my father ever did, she demands far more out of marriage than he ever will. He is far more accepting of her than she is of him.” (p.197). So while Gilbert seems to identify in part the “shackles” that women find themselves in when they enter marriage, she also acknowledges that it can also be a repressive tool against men. “It’s an ancient truism across countless different cultures that there is no better accountability-forging tool for an irresponsible young man than a good, solid wife.” (p.198.) She cites Robert Frost who says, “in traditional societies single young men have a global reputation for squandering their money on whores and drinking and games and laziness: They contribute nothing.” (p. 198). But ask a thirty-something year-old single man, and I’m not so sure he would or wouldn’t agree. As woman have changed, I am hopeful that, since Robert Frost’s time at least, men have too.

Among the Hmong people she sets out to interview, where marriages are arranged, the women she attempts to probe about love don’t seem to have any expectations of their men. It is set up more for civil function and child-bearing, and the woman remain with the women during their days, and the men — well they are off doing God knows what. When Gilbert asks the Hmong women about how they felt about the subject of marriage, she was greeted with laughter and confusion. Of the Hmong grandmother she said, “Neither the grandmother of any other women in that room was placing her marriage at the center of her emotional biography in any way that was remotely familiar to me. In the modern Western world, where I come from, the person whom you choose to marry is perhaps the single most vivid representation of your own personality. Your spouse becomes the most gleaming possible mirror through which your emotional individualism is reflected back to the world.” (p.35). In Canada, where the person we link arms with is an important choice that reflects who we “are,” whether I like the idea or not, I would have to agree.

Gilbert’s chapters are separated to many aspects of marriage: Marriage and Surprises; Marriage and Expectation; Marriage and History; Marriage and Infatuation; Marriage and Women; Marriage and Autonomy; Marriage and Subversion and finally Marriage and Ceremony where she ultimately makes peace with her “life sentence;” albeit with a lot of soul searching and research! It seems to me that she finds her success in being “separate” while also devoted to and a part of Felipe. It makes me realize how utterly lucky I am to have time to myself, to be alone at this point in my life before launching into something too fast and too soon. Maybe I can call it my Eat Pray Love kind of year — the eating and praying part for sure and the love I am gaining for myself as well as a recognition of an enduring love for my son. Maybe we all need at least one of those years in our lifetimes. It seems to be our fear of being alone and that stigma prompting the fear that may be the saboteur of a peaceful path to coexistence.

That stigma of being single looms. Just a quick look at the amount of on and offline dating services that exist out there, and we can see it. We are yearning for connection — looking for that lost half of ourselves. It’s not unfamiliar that concept — our “other half,” our “soul mate.” But is there such a thing? With Hollywood romance pounding the message into our brains that there must be one soul mate out there for each of us, we’ve certainly come to believe it, and all things Hollywood must be rigorously questioned.  Yet instead we go out into the world and look for our mates as if it is our life quest. Gilbert says “our choice-rich lives have the potential to breed their own brand of trouble.” (p.45). Apparently, as soon as we abandoned arranged marriages and began to choose for ourselves, divorce rates sky-rocketed. As I read her book thinking of our freedom to create different “kinds of families” that we either inherit by default because of circumstances, or choose, I consider that the reader will be left with the question: so which is better; to be able to be free to choose, to remain single or to go back to arranged marriages? Gilbert would opt for freedom, but not of the escapist kind.

When women began to have equal rights and opportunities, they no longer had to remain in bad marriages. Then came the myriad of choices, for better or for worse. While  Western marriage is comforting in the sense that it eliminates all choice, it has, as I’ve hoped to illustrate via Gilbert’s book, its own set of issues. Religion imposes a civil and “moral order” (religion assumes we are sheep that need guiding — another power schematic) — a role that today our lawyers deal with when we get divorced: how property and children are divided. After all, the State doesn’t care about our broken hearts. Gilbert discusses how women gave up everything to be in marriage in history – and let’s face it, to a large extent still do in modern times. In Europe’s history, cites Gilbert, “the legal notion of coverture — that is, the belief that a woman’s individual civil existence is erased the moment she marries…a wife effectively becomes ‘covered’ by her husband and no longer has any legal rights of her own, nor can she hold any personal property…Coverture was a French legal notion that spread to England as late as the nineteenth century. British judge Lord William Blackstone was still defending the essence of coverture in his courtroom, insisting that married women did not really exist as a legal entity. ‘The very being of the woman,’ he wrote, ‘is suspended during marriage.’” (pp.65-66). Woman eradicated as humans? This is not something I enjoy reading about, but I believe it  still exists in the deepest caverns of our collective minds. It plays out in marriages, in court rooms and infects the behaviour of many men and woman today — that our worth is hinged on marriage and men alone.

Just going out with many women, and seeing more middle aged women going out on the town with each other, I’m not altogether happy with what I see. Not only do women just want to go out — and now they can without the man which is of course, great and something we now take for granted — many of us womankind are still fiercely hunting. “MILFS,” (a sexist, unfortunate term meaning “Mothers I’d Like to _ _ _ _”) we in a certain age-group have now earned such derogatory terms — “Cougar” being another one of them. You can see it in the eyes — checking out the men who walk into the room, trying to look coy with that red-coloured martini in their hands (wait..I like red-coloured martinis), probably hoping with bated breath that some guy will approach her. While many women might say they have earned the right to employ on the goose what was done to the gander, I have to wonder if women are out really enjoying themselves, or if they are seriously hunting for a man for the sake of increasing her self-worth. I’m not suggesting that woman are solely to blame here, as She has been the object of sexual oppression for generations. Yet why perpetuate the cycle?

Without the pressure of man-hunting, the best possible relationship and the ones I really value are those of my girlfriends — married, unmarried, gay, and yes, even yearning. None of us are alone with the very same questions Gilbert raises — “sometimes life is too hard to be alone, and sometimes life is too good to be alone.” (p.81). Doesn’t that just say it all? Now single, I am even aware I may now be a threat, possibly, to some of my married friends. It even shocks me to encounter married women who think it is so wonderful to be single, so easy — as if I can party all night long. It’s all very ironic because none of it is easy. I may represent what perhaps some married women fear they may become and representing that comes with a price that has saddened me to pay. A single gal can’t always win with the married type. It seems married or not, we all want to believe the grass is either greener on the other side, or that it’s as scary as hell. And believe me, it really is hard the first year of transition from married to single life! Don’t let my going on and on about being single fool you for a moment. I cried for six months straight!! Nothing can spare us from the heartbreak following the break-up or a loss of a long-term partnership or marriage.

What I starkly realized whilst becoming single (it’s a process), is the stigma — that I am less valuable if I am not attached to a man (one of woman’s greatest fears). I have also learned that this idea is farthest from the truth. As I grow and spend about as much time thinking about this topic as Gilbert has, being alone for a long stretch in one’s life without jumping into other people’s beds in order to escape loneliness is probably the most important thing we can do at least once in our lifetimes. And we all will — our spouses will die, our partnerships will break up. We simply have to learn to live well with and happily with ourselves. As a single person and a person who may enter any future relationship, it is most important to learn to value oneself first in order to be valued. One way to value oneself is to spend time alone…and not fear it. Elizabeth Gilbert protects her freedom, it seems for similar reasons. Like me, she enjoys traveling on her own. Like most women today, we try to find that safe place where we can have a partnership while also maintaining our need to pursue our own dreams. Ironically, even with all our hard-earned freedoms, it still can seem like an extreme sport.

Gilbert can get us really thinking with the amount of thought she and Felipe pour into their oncoming nuptials. For me the finest chapter was on Marriage and Infatuation. “History teaches us that just about anybody is capable of just about anything when it comes to the realm of love and desire.” She puts new words to the harsher adage “all’s fair in love and war.” It seems to me Gilbert, despite all the research, came up with the answer mid-way through her book about what makes partnerships last or not, and as I read this I considered by parent’s marriage of forty-six years. I witnessed them building their marriage like maintaining a beloved house. Walls had to be repainted, dying trees cut down and replanted, and some rooms eventually completely renovated. It was constant work and in between they lived out their frustrations and their joys. They are products of this historic belief system as much as my generation is, and future generations will be. Something in them and maybe even about them, I don’t know — they just stuck it out. Who knows what those factors were as they traversed life’s trials that bonded them together or nearly tore them apart. These are the intimacies I will never know. But, it does make me realize that to be in a partnership is to enter a contract that is tacitly renewed every single day. And yes, maybe that is supposed to be at times, “hard work.” Expectations or no expectations, it just can’t always be easy.

Gilbert uses the work of Shirley P. Glass, a psychologist “who spent much of her career studying marital infidelity…[whose] question was ‘How did it happen?’” So as I read the following paragraphs, I thought of the “house” with the strong foundation my parents built:

“The answer, as Dr. Glass explained, is that nothing is wrong with a married person launching a friendship outside matrimony – so long as the ‘walls and windows’ of the relationship remain in the correct places. It was Glass’s theory that every healthy marriage is composed of walls and windows. The windows are the aspects of your relationship that are open to the world – that is, the necessary gaps through which you interact with family and friends; the walls are the barrier of trust behind which you guard the most intimate secrets of your marriage.

What often happens, though, during so-called harmless friendships, is that you begin sharing intimacies with your new friend that belong hidden within your marriage. You reveal secrets about yourself – your deepest yearnings and frustrations – and it feels good to be so exposed. You throw open a window where there really ought to be a solid, weight-bearing wall, and soon you find yourself spilling your secret heart with this new person. Not wanting your spouse to feel jealous, you keep the details of your new friendship hidden. In so doing, you have now created a problem: You have just built a wall between you and your spouse where there really ought to be free circulation of air and light. The entire architecture of your matrimonial intimacy has therefore been rearranged. Every old wall is now a giant picture window; every old window is now boarded up like a crack house. You have just established the perfect blueprint for infidelity without even noticing.

So be the time your new friend comes into your office one day in tears over some piece of bad news, you wrap your arms around each other (only meaning to be comforting!) and then your lips brush and you realize in a dizzying rush that you love this person—that you have always loved this person! – it’s too late. Because now the fuse has been lit. And you really run the risk of someday (probably very soon) standing amid the wreckage of your life, facing a betrayed and shattered spouse (whom you still care about immensely, by the way), trying to explain through your ragged sobs how you never meant to hurt anybody, and how you never saw it coming.

And it’s true. You didn’t see it coming. But you did build it, and you could have stopped it if you’d acted faster. The moment you found yourself sharing secrets with a new friend that really ought to have belonged to your spouse, there was, according to Dr. Glass, a much smarter and more honest path to be taken. Her suggestion would be that you come home and tell your husband or your wife about it. The script goes along these lines: ‘I have something worrying to share with you…” pp.109-110.

While this piece of information hit me like a brick from that shattered house on my head and comes in the middle of her book, the rest of her book is worth reading too. I thoroughly enjoyed (obviously) reading about wo/man’s journey with marriage and where our beliefs may have derived. Most of us, even if we are good at being single, want friends and partners in life. We are, I believe, built to share. While “love based unions make for fragile tethers…maybe divorce is the tax we collectively pay as a culture for daring to believe in love.” (p. 83). I have learned while we need to have choice and freedoms, with them come many responsibilities — for nourishing ourselves and others and treating each other with respect and kindness. And this also grows and changes, like the institution of marriage in our culture, with that tacit contract. Maybe the contract, like people, get better with age. Maybe we come to understand the fragility. Maybe some of us learn, in this age of free expression and openness, that there are some things in life that should be left between two people. Gilbert certainly reminds us of the nature and importance of privacy and the need for a couple to really discuss and think about things, instead of expecting them.

Gilbert, after soul-searching this serious marriage business, finally marries Felipe in the house she buys in New Jersey (which ironically happens to be a converted church) when Felipe’s visa is finally approved. As they utter their vows, a dog suddenly lies auspiciously between them (which just happens to symbolize fidelity). I envision all the people out there writing their long list of pros and cons about relationships. I might be one of them one day. Yet very much like Elizabeth, I still believe in love.

I do, I do, I DO!

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