This video by Alison Ludkin, among other pieces of artwork and writings, can be found on Art of Autism – a site bringing the work of artists labeled with autism online. I suppose I chose it for my blog as Adam takes the train everyday to school and I try to take in all the sounds and stimuli with him. I try to imagine. As for this site, I recommend supporting the artists.
The Autism Acceptance Project brought art by autistic artists in an online gallery back in 2005-2007, with exhibitions in Toronto and online participatory space. As our mandate always has been to ask autistic people first what kinds of supports they want and need, the organization has (and continues) to seek autistic-person guidance and governance. When the site was maliciously hacked about two years ago, we lost much data and records, some of which is now stored at Brock University Library Archives. I must admit that I really enjoyed those days of curating artwork and today, Adam’s poetry and other endeavours, and nourishing them as best I can, is keeping me busy.
I am so grateful for the work by autistic people. My background as a curator of art (my first profession prior to my disability studies work) started my journey in looking at disability differently and began the whole blogging process back in 2005. I suppose when looking at shiny new sites – much better constructed than our budget or ability could muster back in the old-internet-age of 2005 – I am thrilled to have the opportunity to view work by autistic people. This site has such a wide array. This is work we saw much too little of prior to the Internet so it would be an interesting topic for many of us to explore (and a paper about online spaces I am writing at the moment).
May we also spread encouragement and support directly to the artists when we think about creating websites. I believe that the artists, if they are not directly reimbursed because of budget constraints, should at least be directly credited for their work with a link back to their galleries or websites may enable a generation of income and accolades. Also, it would be wonderful to promote not an “awareness” of autism – we certainly have that awareness out there. However, it’s the kind of awareness that can be problematic. As Kassiane S. states: “Awareness is easy. Acceptance requires actual work.” Perhaps a site dedicated to autism acceptance is critical now.
Today I received a call from the school (a good call) that Adam was upset. After given the chance to type about why he was upset, he was talking about the news and of justice. He is beginning to learn about Martin Luther King. He wrote at school:
“People keep talking shit about justice…laugh out loud in life there is no happy and free people.” He was asked if he saw this on the news: “Yes at home and on subway…Hang the reporters …on the news my feeling is that it only shows really one sided opinions…great people are ignored and also sad to hear about death…”
My first instinct as Adam’s mom was to help him understand bad news by thinking of how we all cope everyday. We hear of terrorism, killings in our own city, many injustices. It is hard to watch your own child be pained by it all. I told him about how I think we don’t understand joy unless we experience struggle and also that we cope everyday by thinking about the people we love and the things we love to do. It’s all I could come up with as he listened intently while noshing on rice snacks after school today. Then I commented on all that bad news we hear and rhetorically asked why that is. I would ask any other grade seven student the same question, so why not Adam? I commented that some people only watch the news when it’s bad news. Then I grabbed my copy of the Sunday New York Times and we looked for some good news stories. Dismayed that I could not find anything in the front section, I leaped to the arts section and we found a story about inspiration. I thought we could go with that. Adam leaned in and I started talking about how we need good news journalists. This is what he wrote and with his permission, he does want this published on my blog:
Then Proloquo (the program he uses to type) jammed so we moved to a notes section and he continued:
It’s hard to read from the screen shot so here it is again:
“It sells because people want to see bad things. I would love to have news that is good. A good news story would be about inspiration. I would write about my noteworthy experiences as my autism is my struggle. My very hard time with speaking is my struggle. I want the world inside my open mind to understand my intelligence and I most happy when I can type. I learned to type by patient mommy and I have an about a boy who has worked hard. I think that I am a good example for parents to know that open minds are required for their kids to learn how to type. I want people to read this.”
Adam, the good news journalist, wants you to read… and to hear.
Adam’s body tics and his vocal tics now include an exceptionally loud OW! The vocal component began about a year and a half ago with grunting – I wrote a piece to be published about my perception and response to it for a peer-reviewed journal. As it was accepted with an editing requirement, Adam’s grunting turned to full-on screams and my attention turned to that as my role became to help him emotionally, but also amp up his accommodations and preserve his spot in school. This accompanied an angst at school which was swiftly resolved thanks to a number of people committed to him. As Adam’s communication by typing has concurrently advanced, it is an important conflation – between an expressive burst and the body’s struggle to produce it not only verbally, but also to coordinate every aspect of the body to produce it by typing. Part of Adam’s tics are evidently language and emotion related – charged and urgent expressions and also impulsive and involuntary. Both can occur. This is how I understand it so far and how Adam has expressed his experience to me.
You can imagine that struggling to verbally communicate, involuntary body movement, motor issues are challenging for him – a fellow who is bright, eager and intelligent. It is equally frustrating for him to be called on it or deemed behaviorally inappropriate or asked to be quiet; he was more often assumed to be not listening, learning or paying attention as he soaked up knowledge. Instead, he was discussed in terms of what others could see and understand – and a calling of attention to his tics seem to escalate them.
I welcome the following Ted Talk by Jess Thorn on the creative potential of Tourettes and tics, often experienced by people with other disability labels such as autism. If given agency over creative expression with them, how might persons often stigmatized contribute to our understanding of humanity? What kinds of knowledge that many of us who do not share these experiences might be shared?
There are days when I feel so grateful for the support Adam and I receive from the team, friends and family. My university is so supportive of our needs as well, allowing me a leave so I can lesson-plan for Adam and train him more in language and typing. With support since he was around five years old, Adam is now somewhat independent when conversations are not that open-ended and unclear. I can hand him a keyboard anytime and he can type his feelings or what he needs sometimes faster than he can speak the words. I also learned that animating words makes them meaningful and is better than rote vocabulary instruction.
Adam, as a hyperlexic individual since we could hear him speak at 11 months of age, loves letters and words. I am going to work with my son’s strengths. In so doing, I am training others in the process. Others watch how I do this with Adam and also learn to do it with him. I have no formal training other than personal study and my PhD work which focuses on semiotics and language and disability. This is my passion because of my son.
Adam is heading into puberty and has issues with anxiety, but seems most frustrated at not being able to say what he wants to say. When he gets the words out, he says them forcefully, looking into my eyes and saying the phrases again and again until I say it back. He knows I’ve understood him. I think it’s the way he’s been treated all of his life by us jabberers (dominant ordinary language users) in that we tend to repeat ourselves to autistic people who have trouble with ordinary language because we think they don’t understand us. Adam is doing what we have been doing to him. When I say the words back, echo him, he is satisfied that his message is understood. Phrases like, “I can’t wait anymore!” can be met by me with an acknowledgement and a timer which settles his need to know how much longer he must wait for his desired activity or item.
Also, operation calm down has worked. Adam is happier, the screaming tics abated. Following the stress and episode, Adam always emerges with more sentences (communication). I’ve yet to hear anything from the neurologists on it, but we keep trying just in case. This is not to “cure” the autism as much as it is to ensure that Adam’s health is attended to well; that we are not missing something. The health of the autistic person must be attended to as much as the non-disabled person. (Another topic about how to regard the autistic person might be better sought from autistic people themselves).
It was as if Adam was saying “please listen to me!” and we have. Some of it was because he didn’t enjoy a transition and the team and I will be working on this all year. That said, Adam is fairly flexible all things considered. We haul him on our travels, and I plan on taking him on many no matter what. I believe in respecting his difference and limitations while also helping him through without pushing too hard some days and knowing when to push because those days are so apparent. He loves to be with other people and to see new things. He loves being out in the world and engaged. It’s in the manner we engage him that is important to expand his horizons. I want to thank my university for supporting us in making this the best year for Adam and I. Without the understanding of schools and universities, we might never be able to do this important work that does effect so many people with disabilities in that not every year can be a consistent, machine-like operation. Sometimes we need to step back and focus on our children, or our own disabilities. I am overwhelmed by my school’s support. Thank you York University! I look forward to sharing my copious notes and experiences from the journey this year.
As for Adam this year, my mantra has nothing to do with compliance. It is about cooperation, engagement, respect, “muchness,” connection and yes, joy. Adam’s learning can’t happen without these principles.
I successfully defended my thesis on the film Wretches & Jabberers this week, a day before a bird-deluge on Adam. (I’ll post this thesis to my website later this week). It is my hope that we can all promote this self-advocacy film to be the new film people talk about autism (rather than Rain Main). The day before my defense, Adam got bird-pooped on by a rather big bird. He was not happy about it, but I kept explaining that despite it being messy and a damper on his recess time, it meant he was going to have lots of good luck! It seemed to work; Adam smiled in the car all the way home as I heralded my enthusiasm about bird-poop-fortune.
But today I really want to point to something I am very happy about: a review of Naoki Higashida’s book (he is the film subject in Wretches & Jabberers who lives in Japan) in our very own Globe & Mail today – arts section, page R.4. It would be wonderful to keep talking about this and the film and the contributions that non-verbal autistic self-advocates make to our understanding about autism. I hope this review will also lead people to watch the film.
I am blissfully tired after our second day at the Communication Institute in Syracuse. This is Adam’s first autism conference and all that stuff that was happening beforehand has abated. He is happy here and spending time in a workshop in the mornings learning more skills, and sitting in talks for the rest of the day, and taking small excursions for his breaks. He has watched other typists here intensively and this always inspires him to do it. I’ve learned that he needs less support than I had been giving him, given the right tools, keyguards, anti-glare screens… I’m learning about iPad apps that will change his life and change the way we “do” school…not that most schools (most using ABA/IBI for autistic kids) in Canada understand or provide as of yet. Adam can’t be normalized but he is a very bright, very autistic, very wonderful and intelligent person.
One thing that really gets my goat, however, is the notion that there is no real purpose in teaching autistic people how to type, use AAC, or engage in an academic curriculum. It blows my mind that these things are under threat for autistic people – that communication tools risk being taken away in favor of verbal behavior, which, of course, harkens back to Oralism – when the deaf culture were denied sign language and were forced to speak and act in normative ways. We can look at Victor of Aveyron (1788-1828) for this under the tutelage of early behaviorist Dr. Itard who later abandoned Victor (although Victor could read and use text). Alexander Graham Bell also favored Oralism and it existed well into the 20th century. Today autistics face a kind-of Oralism in Verbal Behavior programs. It’s not that we don’t want our kids to speak if they can, but most autistic folks can’t speak for a full day or not at all and need other reliable sources of communication. These tools for autistic people are a right as sign language is for the deaf, and considering we are asking autistic people to communicate normatively, and autistic people say that they need this means to articulate their thoughts, it’s a complete mistake to even think of taking this away from people.
Society, in the general sense, doesn’t find that many autistic folks are economically productive enough to invest in them, so instead they are called the burdens on society. I’d like to invert that notion of what a burden it is for all of us to be underestimated and only be taught for the purposes of being the cog in a corporate wheel. May I suggest that we all be creative in thinking about the various kinds of purpose and contribution that humans can make, and rethink “productivity.” Then, I’d like to suggest that parents of autistic children who want their children to be accommodated, educated and literate as autistic people to adopt the mantra of those who doubt our children, “so what?” In other words, I think we need to develop a sense of entitlement when it comes to supporting autistic rights to communication tools, access and accommodations. We have to say “so what?” to being autistic, or our children being autistic. It’s a material reality that normative culture is a majority culture to which autistic people work so hard to adapt, and I think of the terrible injustice it is that autistic people have to prove their value and competence every single day of their lives (and often get held back because of it). I think the mantra “So what?” helps me to keep going against ignorance when people ask me why bother educating Adam as opposed to remediating him (before the right to participate or inclusion) or just teaching him functional skills. We are here, literally, among the “wretches,” and there are quite a few here, folks. The critical mass is growing and we ain’t no epidemic. I don’t care what you think of Adam and his going to school or later, university. Just don’t take away his right to it. As for the wretches, they are doing a magnificent job in advocating for this right, and we have an obligation to support them.
Now I will turn my post back to Adam. He was proud of this little story he wrote today which was read aloud to the class – I can’t remember when a teacher presented Adam’s work to the class for such a long time now:
“One day two leaves fell early in the morning. They weren’t happy because they wanted to stay up on the beautiful branch. A nice boy called Adam found them and stuck them up for the rest of the day.”
A few minutes later he typed to me: “Real useful ideas.” Then, “The joy love you mom.”
Thank you my little one. I am your devoted wretch-in-arms.
In 2007, I went to Edmonton to speak at Autcom. I happen to be presenting again at Autcom in Colorado this year about how to support autistic rights as parents, teachers, therapists and caregivers.
At that conference, I was interviewed for the movie Loving Lamposts (2008) which I saw briefly when it was released in 2011. I’ve spent much of the day today re-watching it as I write my thesis. I recommend you watch it for Roy Richard Grinker, Ralph James Savarese, D.J. and Emily, Kristina Chew, Charlie and James Fisher, Dora Raymaker, Sharisa Joy Kochmeister and her father Jay, Stephen Shore, Simon Baron Cohen, Paul Collins, Christina Nicholaidis, Kassiane Sibley, Nadine Antonelli, Lila and Lyndon Howard (boy you touched my heart), and more… and of course the maker of the film, Todd Drezner, his wife and the person they think about all the time, Sam.
It is an important movie for parents (and educators and doctors and…) of autistic children to watch. I don’t think there is any parent, no matter how accepting of our children, who don’t struggle with the temptation to succumb to the prevalent notion that we should be doing more therapy, advocacy, volunteer work and the like. The temptation to believe something is wrong when your child is the minority remains strong, and I remind myself how equally strong parents have to resist this negative vortex that takes away valuable relationship time. And, as stated in the movie, much of my thesis also has to do with how negative views, notions of abnormality and the language we use to describe autism can be assimilated by autistic people as part of their identity. This is really important to me as Adam’s mother. He is now half-way through the age of eleven, and after a really tough couple of months this year, as Adam was communicating something important to me, I consider that pondering my role, my beliefs, how I interact with Adam is, for me, a daily activity. In other words, the work I have to do as his parent on myself is not yet complete; what he wants for his own life and what he can and cannot do just is and I have to help him with that. In this, accepting autism is the hardest work I’ve ever done, and more often than not, the most gratifying. So, I just want to say thanks again for Loving Lamposts to remind me of this, for I believe we could all use reminding. Along with Wretches & Jabberers, it’s one of my favorite autism flicks.
It’s time to think about screenings and have more serious discussions here in Canada regarding how we support and regard autistic people. I sometimes get despondent when I see that ABA is the only option for our autistic children, and how that movement has gained such a hold in the field. It is of utmost importance that we discuss various habilitative services, the right to choice, the right to communication and devices and workers to support communication, to be autistic, the right to be accepted, to love, to be educated, to be supported in life and in finding purpose. My job as Adam’s mother is to make sure he has everything he needs to be an autistic person and everything he needs to fulfill what he wants to do in his life. And what I want for both of us is to enjoy our time together. It’s really important not to forget that.
I have an autistic son who is bright and who requires many accommodations in order to fulfill his Canadian right to an education. At my university, the concept of independence and work overrides the need some accommodations that are required for many disabled individuals. Drawing on my graduate student experience, where we share ideas in class discourse, where we write in dialogue with ideas expressed in other articles, it becomes immediately apparent that none of our work is truly original. Ideas are collaborative. I help my colleagues figure out things and they help me. I’ve never been happier.
The Canadian Human Rights Commission invokes the duty to accommodate concept:
The duty to accommodate refers to the obligation of an employer or service provider to take measures to eliminate disadvantages to employees, prospective employees or clients that result from a rule, practice or physical barrier that has or may have an adverse impact on individuals or groups protected under the Canadian Human Rights Act or identified as a designated group under the Employment Equity Act. In employment, the duty to accommodate means the employer must implement whatever measures necessary to allow its employees to work to the best of their ability. In the provision of services, the provider must implement whatever measures necessary to allow clients to access its services. Unions are also obligated to facilitate the accommodation of the needs of their members by not impeding the reasonable efforts of the employer to accommodate an employee. The duty to accommodate recognizes that true equality means respecting people’s different needs. Needs that must be accommodated could be related to a person’s gender, age, disability, family or marital status, ethnic or cultural origin, religion or any of the other human attributes identified in the two federal acts.
(From Canadian Human Rights Commission website).
It takes work to express how a human aide worker is a necessary accommodation for many people, and for the purposes of this blog, autistic people. What can an aide worker enable, in this case higher education? S/he can help take notes, rearrange assignments in tandem with a professor to enable the student to create work and respond to it, assist walking to and from various locations (I am thinking of a few people I know who are scholars and who require such assistance), organize deadlines and assist with a confusing array of university deadlines and procedures. I myself need lots of help with this. Yet, there is a perpetuating myth that I am an independent scholar; that somehow I exist in a vacuum and am able to navigate all on my own. I can tell you that this is surely not the case and thank goodness it is not. In my Critical Disability Studies classrooms, I share and gain knowledge and insight from people who are blind, autistic and who are deaf. We have note-takers in our classrooms, guide dogs, wheelchairs and ASL interpreters. As I consider the latter, it seems reasonable, in the duty to accommodate notion and the “reasonable accommodation” notion in the Ontario Human Rights Code, that human aide workers also be permitted in classrooms.
Yet, Ashif Jaffer was not permitted to stay at York University (see Jaffer v. York). He is now at Ryerson. At no point in time, reports his mother, did she ever imagine Ashif unable to attend university. I have always felt the same about my son Adam. I do not think that human development is linear as a result of having him in my life and meeting all the people I’ve met. I myself am not a linear learner and I don’t do well with age-imposed deadlines (eg.; one must achieve X by age Y). I am attending grad school later in life. Are we not the result of a post-industrial era? Must we leave school and get a job at eighteen? Of course not. We know that this has changed.
I urge you to watch the BBC report of Ashif Jaffer and his work at Ryerson here. In so watching, I hope you spend the time to think about, and perhaps if you have the time, to enter into a dialogue here about what “reasonable accommodation” means to you? Would you share your thoughts with me and with others in order to help? What are your visions for your “severely autistic” or what-ever label you might have, child? I also do not wish to suggest that college or university is the holy grail of human achievement. This would of course perpetuate the notion that all people must achieve (in the same fashion) it to be valued. This would contradict the achievements made by the Canadian Charter of Rights and Freedoms and the Human Rights Commission and substantive equity. We do not wish to lose the gains we try to make by suggesting that all people must be the same. Rather, what might we achieve in our quest for such accommodations (think also of our public school system) on the different and equal premise. For this, also see the Supreme Court of Canada’s recent decision Moore v. British Columbia. I look forward to sharing more with you, and you with me, on our work to get people with autism the education and inclusion they so deserve. I shall be writing much more on this topic and… thanks for sharing!
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.
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 isour Adam Family.
It’s my birthday in a few hours. Adam is happy because there will be cake. Tonight, I took Adam to the park. It has been exceptionally warm and summer-like here in Toronto and he seemed happy that I was yammering on about my birthday.
With the sun comes another realization of the gifts I receive everyday and that these that I’m about to describe is all I would ever want.
Adam of course is one of them. Before I go on with my list I have to say that every time I write, I’m trying so hard not to elicit pity. The challenges Adam and I face are the “regular” part of our lives. I make choices every day to stick with him, even if I’m feeling pitiful. By dawn, my head always clears if I’ve had a challenging day before. I work on my self, rather than trying to change Adam, to remember what I always have believed about his value, his sweet nature, his ability. I do it because like many autism parents and people with disabilities, there’s a lot of pressure out there to be normal in every way. We can feel so isolated some days, and I often do. Then, I’m determined not to let it beat me up; that it’s for Adam that I also keep writing, thinking, trying to change the educational and other opportunities for him.
Just before the clock turns twelve, I think of all the people who are the real gifts in my life. You have all been a part of my growth as Adam’s parent:
My own parents who are a phone call away; the relatives who reach out just to let me know they are there if I need them; my friends who offer to watch Adam or want to spend time with him and with whom I spend my time with enjoying life; my best friends who always pull me out for a coffee no matter how busy I am; my boyfriend who is patient and kind, who taught me about love, and who is so gentle with Adam; my overseas friends who I went to school with — it always feels like yesterday when we get the chance to be together; the people I’ve met on and offline who check in on Adam and I (it’s so great when we meet at conferences); the educators and clinicians who we’ve been with for years, and some of them new. You are patient with me and my plentiful emails, always willing to discuss things with me. My autistic friends, some who I see, and some who are farther away but who are always so supportive of Adam and I in our journey. I hope I offer you the same support; the other parents like me with whom I’m able to visit and laugh, lovingly, about ourselves in raising our autisitc children — respectful humour is an effective healer. I know I’m missing some in this list, but believe me, you are not taken for granted. You all mean so much. I am rich because of you. Happy Birthday to me… yee hee!
The Autism Acceptance Project will promote stories from autistic people, family members and others who have an autistic person in their life. If you are interested in writing, please enter your submissions to firstname.lastname@example.org.
All submissions will be reviewed by a small panel and will be posted on The Autism Acceptance Project website for Autistic Pride Day on June 18th, 2012. TAAProject will also be promoting your stories to the media.
Deadline for submissions: May 15, 2012.
Maximum Words: 1500.
I have a soft spot for Christopher Plummer. When Adam was a year old, he was mesmerized by the Sound of Music. He loved when Captain Von Trapp used the whistle to call for his children and keep them “in line.” I enjoyed Adam’s baby belly laughs every time he heard that whistle scene. For years Adam loved that movie. I think he fell in love with Maria. Most importantly, the songs and lines in that movie were some of Adam’s first words.
So when we spotted Mr. Plummer at the Four Seasons Cafe in Toronto when Adam was nearly three, I couldn’t resist. I’m not the kind of person who goes up to celebrities and asks for the autographs. I don’t like to disturb private lives. As Adam and I were leaving, we walked past Mr. Plummer and his wife who were sitting near the front of the cafe. The thought of missing an opportunity to thank him (for he did not know that Adam was autistic and could not speak) prompted me to turn around with Adam, who would not have recognized the older Plummer as his dear Captain.
“Excuse me, Mr. Plummer?” I approached timidlly with Adam by my side.
“Yes!” he said delightedly, his eyes darting up at me who had interrupted a quiet conversation he seemed to be having with his wife. Already I was taken.
“I just want to let you know that my son is a big fan. He watches The Sound of Music over and over again.” Mr. Plummer’s face was so gracious. At that point, I could have gone into a little diatribe of how Adam was autistic and how much that movie meant to us, but I didn’t want to take up Mr. Plummer’s precious time.
“Well,” he responded in that well-known dignified voice. “It’s so nice to see that my audience is growing younger and younger.” We both chuckled and I said thank you and goodbye.
Maybe Adam will enjoy that story one day. I sure enjoyed watching Mr. Plummer receiving his well-deserved award with the same graciousness we experienced that afternoon. Little did Mr. Plummer know what a difference he made in Adam’s young life — how the movie taught him some language, music, made him laugh and calmed him nearly every night before bed. I suppose none of us truly realize the sprinkles of star dust we can leave upon each other.
I’m sure you’ve all seen the Google Valentine co-animated by Michael Lipman. The boy keeps trying to win the girl’s heart with things. In the end he does simply by sharing in the same activity with her.
It reminded me of how to engage with our autistic children this day and every day. Sometimes when our children engage in “self-stimulatory behaviour,” we don’t view it as functional so we don’t engage in it ourselves. Without making a big deal of it, try to do it quietly. The less words I use and the more I am with Adam, the more he can be with me. I am always taken aback at out loudly people talk to autistic children in particular, and how often we ask kids to mimic our “normal” behaviour. We need to take time to engage in the activities that make them happy. We also need to do it in order to see the value of our children as autistic people.
It’s cute. Enjoy it, and have a great Valentines Day, every day, with those you love.
I love colour. After my separation and divorce, the colours I picked for our home were all grey. As first couple of years separation passed, and then meeting someone very special and having lots of friends and laughter in our home, I’ve been picking more colour. Every piece of new fabric is like another step towards feeling comfortable here, another step towards creating our unique family. I write a lot about home because to me it is symbolic (or I should go into interior design). When Adam and I moved here, I found three four leaf clovers on the property. While I was a little superstitious before, I now really believe in omens.
Recently we’ve been fixing our kitchen and doing a bit of re-decorating, managing to fix things, making the house more ours than the previous owners. It was my decision to put our whole selves here because it’s the only way to grow. I decided we can’t live life half-way, waiting for it to happen to us. As I add fabric — purples, yellows, vibrant ochres and the yellows I saw in Sri Lanka, I feel more relaxed. Adam burrows himself under the lavender blanket by the window on the new couch, or sits and reads his books and he looks so, well, at home. Someone said to me that choosing colour because I’m happier, and they are right. Adam, of course, picks up on this. We are growing our roots again.
Two years ago, Valentines Day, Adam and I had to leave the home that sadly caught fire last year, ironically also in February. It was a home we had built ourselves. I felt awful because it was still the home Adam later visited his father after I moved out. Adam did a lot of crying and spasming when he had to make the move. In the past several months, I drove Adam past the other house, which is still standing, and Adam wanted to go in. When I explained that he no longer lived there any more, he didn’t fuss. He knows his home is here now. I felt, though, that I owed him some gentle explanations and drive-bys — everytime we went near after the fire, he would crank his neck out the back seat window of my car to try and see his “old” home across the park or down the street. I felt awful not letting him back initally, but I had to make sure he would be able to handle it.
I think about that move and how hard it was on Adam, and on me. Our home now is a place where love thrives and I thank those who are close to us for bringing it back into our lives.
I have a favorite non-autism blog right now. It’s by friend/artist Carla Lipkin called A Water Colour A Day. I love Carla’s work (and she’s a lovely person too).The blog is a work of art — you must check it out.
It got me thinking of how another friend of mine, years ago when Poloroids were the rage, took pictures of herself every day the year before she turned fifty. On her fiftieth birthday, she put them all up and they made an exceptional piece. Blogging and journaling can be art too. The watercolour above is something I did a couple of months ago really quickly. I used to paint all the time while I was taking art studio and art history. Now it seems my duties as mother have taken precendence over the projects I really love doing. I have to ask myself why this has happened?
Looking at Carla’s blog made me think about the importance of the everyday. For some of us, we like to document it. We really do take the small stuff for granted. Adam also has artistic ability. Wouldn’t it be fun to make a little time every day to document something of our lives, no matter how seemingly trivial or small. At the end of the year these little things add up. Besides, isn’t every life a work of art?
I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.
because finding joy doesn't come without struggle;
because the point is to find it;
because if an autistic person calls autism their way of being, not an illness, then it is;
because every human has value and is a joy;
because despite inhumane acts, I believe in humanity;
but most of all, because of my son Adam.