A collaborative project made with Adam for Project Revision:
A collaborative project made with Adam for Project Revision:
I’ve been sitting back and watching. While not all things are perfect, I have to recall what it was like in Ontario 12 years ago when I was first introduced to this social phenomenon called autism. CNN had numerous reports on the “epidemic” of autism; the MMR vaccine was blamed; there were numerous reports of questionable remedies that put autistic children in harms way; there were hate blogs written about autistic people and parents who wanted to love and support their children. The blogesphere was not yet syndicated and contained burgeoning home-made blogs by people labeled with autism and we learned a lot from autistics who wrote them – about activism, identity, the right to be who we are in every neurological way. Indeed, neurology is a term of the times which has redefined difference (neurodiversity). Although this is critiqued by many of those belonging to the disabled community as the new normalizing term (Lennard Davis, The End of Normal: Identity in a Biocultural Era, 2013) thereby losing its utility, I suppose I belong to a group who believes that we might not have gotten to this place of questioning, and beyond an institutional disabled identity (i.e. segregated and isolated), without this renaming and reconceptualization. To further highlight Davis’ important question:
“If we are now living in an identity-culture eshatron in which people are asking whether we are ‘beyond identity,’ then could this development be related in some significant way to the demise of the concept of ‘normality? Is it possible that normal, in its largest sense, which has done such heavy lifting in the area of eugenics, scientific racism, ableism, gender bias, homophobia, and so on, is playing itself out and losing its utility as a driving force in culture in general and academic culture in particular? And if normal is being decommissioned as a discursive organizer, what replaces it?'” (Davis, 1).
Davis argues that diversity has become the new normal.He also makes an important point that there are some people who do not have a choice of identity, which, in my words, may dampen the concept of diversity for our community. In particular, disabled identities are not chosen. Perhaps we now have to think beyond identity and challenge the concepts of acceptance and community in a world where these lines are always expanding and contracting.
That said, I remember what my introduction was to autism. Mothers and fathers before me remember institutionalization. Parents advocate for a world where autistic children are accepted, even if in a neoliberal paradigm (in other words, while we can see its shortcomings, we still do many unpleasant things to survive). It seems the “strengths” of autism at least are earning a place at the employment line, which then perhaps allows our children to get an education and better services. Perhaps our kids will be understood for their sensory, communication and social issues and not be reprimanded or judged for them. All these seem like good things. I would like to imagine a world where we never forget – where many of the younger generation of ABA therapists and teachers have no recollection of “different” kids in their neighborhood suddenly disappearing. There is work to be done to educate people working in the field on the history of disability and institutionalization and how close we always seem to be to doing that again. Must we continue to ask why this is happening despite the advocacy for autism acceptance?
And finally, in Davis’ words:
“There is a built-in contradiction to the idea of diversity in neoliberal ideology, which holds first and foremost each person to be a unique individual. Individualism does no meld easily into the idea of group identity. And yet for neoliberalism it is a must. In a diverse world, one must be part of a ‘different’ group – ethnic, gendered, raced, sexual. It is considered boring if not limiting, under the diversity aegis, to be part of the nondiverse (usually dominant) group. So diversity demands difference so it can claim sameness. In effect, the paradoxical logic is: we are all different; therefore we are all the same.
The problem with diversity is that it really needs two things in order to survive as a concept. It needs to imagine a utopia in which difference will disappear, while living in a present that is obsessed with difference. And it needs to suppress everything that confounds that vision. What is suppressed from the imaginary of diversity, a suppression that actually puts neoliberal diversity into play, are various forms of inequality, notably economic inequality, as the question of power. The power and wealth difference is nowhere to be found in this neoliberal view of diversity….Ultimately what I am arguing is that disability is an identity that is unlike all the others in that it resists change and cure…disability is the ultimate modifier of identity, holding identity to its original meaning of being one with oneself. Which after all is the foundation of difference.” (Davis, 13-14).
While I acknowledge Davis, I find myself thrust into an acceptance paradigm that allows Adam to be in a classroom and in the community, however imperfect (requiring time, exhaustive and emotional effort, Adam’s emotional effort and his ‘trooper’ ability among it all) – and all of this based on proof of competence and ability as he counts money so fast that the adults in the room have to check to see if he’s right (he is). I think it is great if we can enable others to see autism as a way of being in the world – sensory difference as not behavioral belligerence; non-verbal disability as not an unwillingness to speak or non-intelligence. To go on: not looking at someone when they are speaking doesn’t mean that the autistic person doesn’t understand what is being said; not wanting or able to be social should not be isolating or a reason to segregate nor a reason to push one to be social just like everyone else. (So what I’m saying is that as activists and/or advocates, we are still at this place). There are still so many misunderstandings in a moment with an autistic person, and one hopes that this marketing will help. I mean, we all have to survive, right? Adam’s survival is no different than mine except that he is at a clear disadvantage despite “neurodiversity.”
While recent autism advocacy is far better than I can remember 12 years ago, it remains services and employment based (and I am not at all suggesting we don’t need to do this important work to discuss services and accommodations past the age of 21…but we need to discuss this also in a much larger context). A discussion of the inequalities about which Davis and others speak must also be a topic to discuss the bigger picture of what we mean when we talk about inequality. Another part of this discussion might be to discuss all the the proofs that an autistic person has to demonstrate before earning a place at the school desk and in the boardroom – and a discussion why these suggest human value. These may not acquire the immediate services that people need but they are important to our evolution. We can do this while continuing to mine the various meanings of purpose.
I am end of term, writing papers on technology and autism using critical theory and my interest is how we invoke these to obtain work, to socialize, but also in how these shape our existence. While technology is said to open up avenues for communication, we do not heed the critical theorists warnings of Adorno and others – that there can be “no true life possible in a false world.” The question is, how do virtual realities and mass culture, mechaniziation and so forth limit the acceptance of autistic bodies among us? It seems that work to befit the body, not the body to work. This is also a feudal notion invoked by the company Specialisterne which is a software development company providing work opportunities for autistic people.
My job is to critique these structures and life is my lab. I am a mother to an autistic son as well as a single mother and I engage (and explore) in atypical forms knowledge production with my son – I attempt to resist the standard ways of producing knowledge that in fact are, to Adorno’s critique (my interpretation), relativist – that speaks only unto itself within a frame. That is, science speaks to science and we’ve adopted its rhetoric. As such, it may shape the way we think about our lives by this framework.
We cannot examine a system if we don’t try to work from without. So, when I go online to look at the company Specialisterne, which provides work opportunities for autistic bodies, it is imperative that we question how bodies may be vulnerable to exploitation in totalizaing “autistic charactersitics” as: “able to focus for long periods of time; superior ability to recognize patterns; superior visual perceptual ability” and so forth. While autistic people need to eat, and work provides important human connection (see “emotional labour”), we have to be cognizant that we are working within a system that reduces support, devalues disabled bodies and in fact, requires all of us to work longer and harder – in fact, like machines…automated…autistic. While these characteristics that may be present for some individuals, we have to be aware of how generalities about autistic characteristics may serve to oppress people.
That said, as I do my research, I was tuned in on the marketing of Specialisterne to ask if an autistic person is a “weed or herb?” (see Specialisterne’s banner above). If we are to speak, to anchor ourselves in frames of reference for how we have come to be where we are and to think about autism, we are obliged to point out that the term came from a eugenics book Weeds in the Garden of Marriage (1931) by George Henry Lane Fox Pitt Rivers. Using this object metaphor is also explored in this paper by Gerald O’Brien in Disability Studies Quarterly.
It might be helpful for self-advocacy organizations to engage in media and marketing monitoring to ensure that dignity, respect and the history of oppression is recognized, so that we may never again re-invoke the rhetoric which belonged to the eugenics movement which rendered the segregation and sterilization of disabled people mandatory. It is curious that marketing firms would not research this thoroughly.
I’m in Denver at the AutCOM conference, having posited the question of who gets to occupy space (and how)? At many autism-friendly conferences I attend, autistic people are permitted to get up, make noise, sleep under the table. How many times, I think, do I discipline my body to fit into spaces – in the classroom, at a luncheon, at a conference. In fact, I sit so long as a student, for instance, that I’m developing sciatica! Universal Design is about bodies – the way bodies live in space. Autistic people teach me that I’ve been trained from the time I’ve been young, to be a docile and compliant body.
There are many ways that universal design is good for business because it creates permission for bodies to act and be as they are. As a simple example, an automatic door opening is good for strollers, for when my hands are full. Thinking about universal design for all bodies is to also consider how people’s bodies can take breaks, work comfortably.
I’m putting up the video on the Ed Robert’s Campus because it helps us to reconsider space, but also permission and the disabling affects that current design restricts people from living with and among others. Although this is still a segregated campus that is arguably affordable to attend for only a few, it is an example of how easy it is to design creative spaces that enable all types of bodies to contribute and participate in society outside of restrictive normative constructs. And accommodation isn’t difficult – while designing spaces is an inclusive and creative necessity, as I mentioned, permission to allow people to use their bodies the way they need to use them, enables participation. Does anyone want to sit upside down now, or take a break under the table?
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.
The Autism Acceptance Project (TAAP) will post a new announcement on its website about its forthcoming work and formation of a new board of directors. TAAP is an organization that is directed by autistic people, and facilitated by non-autistic supporters in order to reflect the concept of inclusion. As a mother to a child who has communication challenges, I am personally invested in autistic rights for the non-verbal populations. TAAP will encourage research and activities to enable the question of who is missing from autistic organizations and how might we reconsider the manner in which we organize in order to equalize power imbalances. For the aphasic community for instance, this is addressed. Yet the manner in which we have constructed (and essentialized) autistic identity remains problematic if we do not consider the broad scope of individual experience. For example, while some people (autistic or not) prefer to be on their own, other people do not wish to be. In autism, we tend to apply broad strokes to describe how an autistic person lives and thinks through labels. There are dangers in suggesting that all autistic people “prefer to be alone” as much as we assume autistic children need to be yanked into a neurotypical social world in order to be valued and included in society. The truth is in there somewhere, but usually between the two extremes. The point is, not every person is the same and we need to account for this in autism as we would for any person.
As part of my doctoral research, which will begin this fall, I will be studying emancipatory research and social organization for our community. With autistic folks, we hope to assist clinicians, therapists, educators, parents, caregivers to support autistic rights as one of our projects.
Allow me to share some extensive quotes from Carole Pound and Alan Hewitt’s Communication Barriers: Building Access and Identity for your consideration. I do hope that many others will engage and invest in research for our non-verbal/ communication-challenged populations:
“…an interesting additional challenge is that if language is the core of what makes us human, and the primary means of exploring new narratives of illness and disability, how do individuals negotiate personhood or the development of changed identities following sudden loss of speech, understanding, reading and writing? How does your own and others’ difficulty with understanding and using words impact on your ability to talk about and question fragile new forming identities with others who are also grappling with a concept at the edge of words? Given these difficulties, how much greater is the risk, as a language-impaired person, that your personal disability narrative will be hijacked by outsider stories constructed by families, professionals, researchers and the media?” p. 165
“Many people explore concepts of disability and identity by being exposed to and engaging with discussion of alternative representations of disability. New stories of disability can challenge internalised stereotypes offering a precious escape route away from the set of ‘tragic stroke victim’ or ‘courageous little fighter’ paths purveyed by mainstream media and disability charities. The means of accessing new narratives is not obvious when academic texts, articles, and website stories are hidden behind a veil of language.” p. 165.
“Meeting, supporting and just ‘being’ together are powerful experiences which, in many respects, transcend words. Meetings between people who share a common communication disability, but who each individually require different levels and types of communication support, are not without challenge. Negotiating communication support from non-language-impaired people, such as relatives, volunteers or health professionals, is an option but one which runs the risk of meetings being dominated and controlled by those who can speak and write. Notwithstanding these challenges, self-help groups remain a rare bastion of power and identity for many people with aphasia.” p. 165.
“Access to a sense of personal and social confidence, to a more certain identity, is for many people a pre-requisite to asserting one’s voice, to feeling you have a possibility and a starting point to interact with power. So language, identity and power become crucially interwoven. Without language, it is very hard to grasp the core of identity, and without language and identity it is virtually impossible to hold and interact with power. How, then, can those who possess intact language and power develop skills, environments and structural supports which acknowledge this imbalance and model more equal power relations?” p. 165
“Those charged with implementing communication access need to think creatively about ways of engaging people, processes, environments and infrastructuers with new communication practices, practices that attend, non-tokenistically, to the diversity of communication.” p. 166.
Some of the ways the authors suggest for assisting and organizing for those with communication disabilities are:
-training for those without communication disability;
– including ‘interpreting’ skills enabling non-communication disabled people to adapt their spoken and written language to make it accessible, and training in monitoring language for clarity and flexibility;
-supporters who offer one-to-one interface between people with and without language impairment. (p.166)
“At Connect, for example, trained communication supporters facilitate inclusion in meetings by going through papers at pre-meetings, supporting the person with aphasia to follow conversational exchange and ask questions, by taking notes on line and by spending time after the meeting to review ideas, concepts and decisions. Communication access training focusing on written documents is a further aspect of developing communication skills, supporting everyone in an organization to reword complex, abstract documents and information into clear and concrete language. Training also supports people to consider format, layout and use of pictures that most readily support communication access. The situation where everyone in the organization, from therapist to receptionist to researchers to finance director, takes responsibility for monitoring and changing their use and presentation of language is a healthy first step towards inclusive communication.” p. 166.
In the autism community, it’s just as important to look to other community’s that share similar challenges, and to read what they have to say. Often in our community, we tend to get locked into autism labels which confine us to consider that autistic people, with “different” behaviour, cannot be capable of understanding language, although we have enough research and personal accounts to seriously challenge that assumption. As researchers engage in ways to “enable” autistic people to communicate, which is important, we also have to consider the ableist dimensions of technology and language training. We have to consider that power comes from those who can communicate, and to rethink our organizations and the way we do and do not provide access. As suggested, communication seems to assure identity and power. In its absence, does it mean that an communication-impaired person is not a person? How accessible is current technology to autistic people? What are the barriers to access which include financial issues, attituidinal issues in AAC provision? What about the way we enable or disable a different way – perhaps we can coin it an autistic way – of information gathering and language construction (or any other kind of construction such as art, the way information is gathered, learned and expressed)? We tend to assume so much about how people should be and it may behoove us to think that neuro-normative ways could very well have its own limitations. Perhaps its time to cross borders.
Pound, Carole, Hewitt, Alan. (2004). Communication Barriers: Building Access and Identity in Disabling Barriers – Enabling Environments. (John Swain, Sally French, Colin Barnes, Carol Thomas, eds). Sage Publications.
How can The Toronto Star and by many autism charities address the diverse needs and views of the autism community? My concern is that there is little (if not any) of critical disability perspectives. Typically, journalists run to autism “experts” with medical backgrounds and this becomes the only lens through which we have come to understand and view autism. Autism, a classification imagined and made by humans, has become reified. This essentialist view is the most troubling for our community.
My questions of late are: How can we facilitate a respectful discourse among autistic people with different experiences? How can we include non-autistic family members into the dialogue who are also stakeholders, but whose very involvement in autism charity (which directs research) can be considered based in positivism and reflective of an imbalance of power? In other words, concerning the latter, as non-autistic parents and medical “experts,” we impose a concept of normalcy that we are discovering through autistic communication of experience that, in fact, is different from how many of us non-autistic people view things. We (typicals) consider our viewpoint over and above the experiences of autistic people. We produce knowledge that is language-based and that is taken as more true and accurate. I’m also very curious how we all appropriate such impositions upon our own identities? For instance, if you are given a narrative about yourself (autistic or not) and how you must be, do you then turn it inward (this has also been refered to as internalized ableism or oppression)? How does this effect the questions posed here?
Autism charities, researchers and news media need to consider these questions to reflect the broader autism discourse, even when many views run counter to their marketing campaigns and economic research interests (or should I say, especially when). By doing so, we may discover ways to better address the real needs of autisic people specifically. I’d like to see autism charities take up this dialectic discourse. It doesn’t have deadlines or meet fundraising goals, but this is what our community needs the most. I get concerned when autistic individuals are folded into big charities largely populated by non-autistic interests.
Feminist research has pointed to a constructive confrontation. “bell hooks (1990) declares the need for ‘meaningful contestation and constructive confrontation between different perspectives and urges the creation of safe spaces where critical dialogues can take place between individuals who have not traditionally been compelled…to speak with one another.”(Hess Biber, Leavy, 2007)… constructing a space that is open to dialogue across… voices are granted equal air time, we actually build community…” This comes from feminist research methods which has changed the way we have been able to do research. Both feminist empiricism and emancipatory methodology can provide useful examples to the way we approach autism research and community.
Sharlene Nagy Hesse-Biber & Patricia Lina Leavy, Feminist Research Practice, London, Sage Publications, 2007.
I love my City of Toronto where I was born and have lived for most of my life. I’ve lived on the outerskirts and downtown and midtown and I never loose interest or discover new pockets of Toronto. I never liked “bedroom communities” and I don’t thrive well in them. As an art curator, I used to cite the many aesthetic issues as well as social consequences of bedroom communities when I had my own newspaper column, even though most of us don’t have any choice to live in them, as was the situation with my family. Others claim they prefer not to live in “the big city,” and that’s fine too. For me, however, I enjoy being able to walk out the door and take a few steps to the corner to get what I need, to walk or bike to, and be among people. When I talk about my city, I’m really talking about community and there are many notions of community that are important in discussing inclusion and people with disabilities.
After a divorce, I had to move back uptown. My partner and parents live downtown and I am backing-and-forthing. I’ve envisioned Adam’s future downtown, where transportation is accessible, where the chances of having employment could be easier because of accessibility to them; where support in the way of people may be more readily available, and for him to also feel a part of the daily pulse of life among his fellow citizens. I take it for granted, perhaps as a matter of necessity or as a premise unto itself, that he is a valued member of this community, even though we encounter many barriers and prejudices — sometimes subtle and other times overt. It’s an ideal, of course. At some point in the near or distant future, when our lives don’t demand the need to be uptown, I will move us mid or downtown again. Accessibility and being with people is key for me, my vision for Adam, and for our growth as a family that fit with my values.
Along Christie (it’s a street in Toronto), a quote from Jane Jacobs remained unfinished graffiti on a cement partition along the sidewalk. For nearly a year, only half the sentence was written, waiting for someone to bring a can of spray paint and fill it in. “Cities have the capability of providing something …” I felt compelled to drive up and down Christie for the past several years not only because it seems to be one of my favorite areas in Toronto, and one of the first points of arrival when my dad immigrated to Canada, but also because I wanted to see if the sentence would ever read complete.
About this time last year, someone filled it in, but it was incorrect. A few weeks later, it was erased. I waited again and kept driving. In the true Jane Jacob spirit, the practice of finishing the sentence, albeit a quote from her, had to be accessible and inclusive. (Thank goodness Mayor Rob Ford’s attempts at erasing all graffiti from the city didn’t strike this wall). Finally, a few months ago, the sentence was completed:
“Cities have the capability of providing something for everybody only because, and only when, they are created by everybody.”
The notion of creating and including everybody is appealing to me, and I gather for this reason, an idea was germinating. How can we cooperate and create our communities that support and include autistic people? Is there a way to use Jane Jacob’s model and discuss the pitfalls and possibilities of creating what we need for ourselves, outside of the systems that can sometimes oppress us? Is there a value to doing both? These are some of the questions I have in disability policy. I’d like to use this blog as a little laborartory for discussing these ideas, and for practicing them.
In Michael Prince’s paper, Inclusive City Life: Person’s of Disabilities and the Politics of Difference (Disability Studies Quarterly), he highlights some of the issues raised by a citizen in an open letter to Canadian politicans:
I used to adore Toronto. As an able-bodied person, it was relatively simple to get around and I appreciated having access to all Toronto had to offer. I didn’t pay attention to the lack of elevators, escalators and ramps. I am 30 years old and have multiple sclerosis now. I am no longer able-bodied but disabled. These days I use a cane or walker to aid my gait, making uncomplicated things more demanding. I now despise Toronto due to its lack of accessibility. I miss the things I once loved and want to enjoy them again but I cannot because establishments are inaccessible. Why am I being penalized for a disease that caused me to become disabled? Why is this kind of discrimination allowed?
His article highlights the ideas of various civic leaders and thinkers and some of the issues that confront people with disabilities in cities. One of them he cites is Iris Marion Young, the author of Justice and the Politics of Difference to present a series of interesting premises’ in the creation of accessible cities/communities:
“In the city,” writes Young, “persons and groups interact within spaces and institutions they all experience themselves as belonging to, but without those interactions dissolving into unity of commonness” (1990: 237). Several premises are contained in this statement. One is that people, as individuals and in groups, have the capacity and opportunity to participate and interact with other people. A second is that sufficient and accessible public spaces and institutions exist throughout cities to enable the being together. A democratic politics, Young stresses “crucially depends on the existence of spaces and forums to which everyone has access” to participate — to speak, listen and bear witness (1990: 240). A third premise is that such interactions generate common experiences of belonging, a basic component of citizenship according to most commentators on the topic. Certainly, for people with disabilities, these public spaces require supports, services and likely adaptations to enable all to speak, to listen and bear witness, regardless of their abilities and capacities. The fourth premise is that individuals and groups participating in such public places and institutions are able, at the same time, to maintain a sense of their own distinctiveness, special status or group identity. Perspective 4 therefore contains, as do the other perspectives, a number of empirical perquisites, behavioural expectations and normative claims.
While the ideals of Jane Jacobs may not as of yet have reached our cities and communities, I think her notion of “creation by everyone” is a vital link to thinking about how we build them.
“Our job isn’t to figure out if a student should be participapting. Our job is to figure out how a student should be participating.”
This is a line from Paula Kluth’s DVD, author of You’re Going to Love This Kidon inclusion in the schools.
We are on the brink of another school year. Many parents struggle with finding not only a placement for their autistic child, but the right placement. In Canada, as is for many places in the world where children are more likely than ever to be included, children and parents with autism are still some of the most excluded in our society. I often find it shocking the lack of support in my country where we seem to have otherwise great social supports. Despite there being many great and willing teachers, the school system is still one of the most unjust insitutions for autistic students.
While many of us work to change attitudes and policy in Canada and the US, I want to reiterate what an important step integration and inclusion is for all of us. Watching Adam at camp and even younger people with disabilities, the younger generation already has much more exposure to kids with disabilities than my generation ever did. Many a parent I’ve met will register their child into an integrated school in order for their children to respect and value everyone. After kindergarten, however, the segregation typically begins. While we may have seen more effort towards inclusion, we are still teetering between the two extremes.
Watching Adam with other children and their patience and acceptance shouldn’t just happen once in a while or at summer camp. Adam has developed so much this summer, as he does every year, and his peers do too. They are much more tolerant and accepting than I can remember of my generation. It is an indication of how important it is to start inclusion young and from the get go. I believe it is the older generations like mine who simply let old habits get in the way. Watching how easy it is for children to accept human difference is proof to me that inclusion is good for everyone.
This post is dedicated a couple of submissions I received this summer for review: Paula Kluth’s website, DVD and book I’ve mentioned before, You’re Going to Love This Kid; Eileen Riley Hall’s Parenting Girls on the Autism Spectrum.
The key for teachers is to learn how to include. This involved adaptations in the presentation of lessons, to how a child can respond to lessons. Adam, for example, responds to multiple modalities, but the main way of teaching him and transferring his learning is through the visual — computers, iPads, manipulatives and actual experience in the field. Accommodations also include sensory breaks, exercise, and other adaptations to a classroom. For instance, Adam can focus better on a ball chair. Otherwise, he needs to move his entire body so this provides the feedback he needs right now in order to attend to his lessons.
While the pressure to “be normal” in its elusive forms and definitions was more difficult when Adam was younger, we have grown into another comfort level with our lives and ourselves. Adaptation is simply a wonderful way to make learning accessible to Adam and it’s a joy to watch him grow and learn. Paula has many tips on adapting lessons and changing attitudes so that teachers and schools can adopt full inclusion. She makes it sensible and inspiring. I suggest you check out Paula’s YouTube channel for more information.
Eileen Riley-Hall is the mother of two autistic teenage girls and the author of Parenting Girls on the Autistic Spectrum: Overcoming Challenges and Celebrating Gifts (Jessica Kingsley Publishers). As the mother of a boy, I was wondering what I’d learn from Eileen, but knowing so many parents with young autistic girls, I had to recommend her book. Sometimes we just want to refer to another book by another parent for that down-to-earth advice. I would also recommend along with a how-to book such as this, all the books by autistic women including Donna Williams, Lucy Blackman, Dawn Prince, Temple Grandin, Jasmin O’Neill (among others) — some of the first autistic women to write from their own unique perspectives. I like to pair my parent-memoirs with those also written by other autistic people.
What I found most refreshing in Riley-Hall’s book was Chapter 8 on “The World Wide Web.” Most books written by moms of autistic children usually contain lists of therapies and websites that can seem overly-diplomatic, noting down every therapy out there for the parent to sift through without any critical analysis of the therapy, the way it came to be in the vast array of (and history) autism “treatments,” and the controversies and potential dangers surrounding them. In contrast, Riley-Hall offers some warnings and states the pros and cons of the many websites that parents must navigate when entering the autism community. “There are very distinct divisions within the autism community. So you have to know that whatever you read is fueled by an underlying position or philosophy about autism: what it is, what causes it, and how best to treat it..unfortunately there is very little middle ground in between.” (p.131). When I first started reading books about autism by parents ten years ago, I wish someone had provided me with that caveat.
In reviewing her list, it is apparent that Riley-Hall is recommending sites that support and accommodate the autistic as “complete,” an encourages society to value the autistic person. This book is part “how to” book and part memoir that makes Riley-Hall’s book accessible for the parent of an autistic girl. Best of all, it’s all about acceptance.
Best of luck everyone in prepping for another school year!
I’m writing to inform you that www.taaproject.com (The Autism Acceptance Project website) has been maliciously hacked. We have to take the site down and likely rebuild it.
Please do NOT go to that link. If you do, your computer may be compromised. Share this information. We will also be sending out a newsletter to all of our members as soon as possible.
We apologize for any inconvenience this may cause.
I’m worried that some people will view it as another autism miracle. Don’t get me wrong, I’m ecstatic about the iPad and other technologies and the awareness this brings about autistic intelligence. I have cited the research about the EEG’s and FMRI’s in previous blog posts where it shows the brains of non verbal individuals with various severe disabilities lighting up like typical brains. In other words, we have evidence that many non verbal individuals can understand what is said to them and have complex thoughts. What was presumed as “functioning at a level of an infant” can no longer be assumed.
I feel compelled to remind readers and hopefuls of a couple of things. The first being that non verbal individuals with various “severe” disabilities (I use quotes because of the way that’s been so misunderstood in terms of intelligence), have been using devices for years. Typewriters, computers, Vantage Lites, Lightwriters and more. With Adam, I chose to use the Alphasmart Neo because it was cheap and portable and I could download our conversations onto the computer. Yet all it offered was the chance to practice typing. It did not have the windows and picture symbols of other programs found in expensive devices. Now the iPad provides this.
Many of these devices are so expensive that it is not feasible for many families to obtain them, costing upwards of sixteen thousand Canadian dollars. Repairs can also cost thousands. The advent of devices like the iPad makes communication so much more accessible, although many adults and families can still not afford them. They may, however, be easier to get into their hands through schools and subsidies.
My point is that we’ve known for a long time that technology is important, and that autistic individuals can communicate with them. It’s not a sudden miracle or epiphany, I hope, to realize that autistic people are intelligent, and the community is as diverse as any other, meaning, that levels of ability and intelligence are variable in every group that we are trying to define.
Now to my next point. We can’t expect to plunk an iPad into the laps of our children and expect them to know how to communicate with it.
Just over five years ago, I began typing with Adam. I found I had to facilitate him by supporting his lower forearm. If I had not, he would have typed the letters over and over or typed a word he loved. It continues to be a challenge to get him to focus because open-ended communication is very difficult for him. Supporting him did not mean I directed him. I learned by people at the University of Syracuse, and through my own studies, how to support him and apply, in his case, a backward resistance pressure. By actually holding his hand back from the keyboard, he had to type with more force and intention and this seemed to help him complete a sentence. I neutralized his hand in the centre of the keyboard and he went from there.
I received a whole lot of criticism because of the FC controversies back then. I still did not give up. I knew, because Adam could read since eleven months of age, that he was a candidate to become an independent typist and communicator.
Fast forward five years later and we’re still at it. I’ve been observed by many Centres and professionals and I’ve not known a lot of what Adam types in order to prove that his communication is reliable. I do this by asking him questions or talking about things he did that I would not know. I have to keep my skills in check.
Today, he types somewhat independently. He sends me a short email everyday from school, primarily because they have not been trained in supporting him. If I need to support open-ended communication, my hand is further back on his arm. He will usually say the word or letter now before he types it and he types fast that if I don’t slow him down, he may lose sight of what he is trying to write. For communicating wants and needs, Adam can verbalize or type on his own. Give him YouTube, and he’ll type whatever he wants — from “water slides,” “Walt Disney,” and “Psychedelic Cartoons.” We recently visited an AAC expert (Augmentative Assistive Communication) and her response to my support was that my method was not very “facilitated,” just some marginal support. Not only that, all the nuanced support I give him all the way down to my patience and energy is difficult to document, but so important in teaching how to use a device for “functional” or “social” communication.
Adam also uses picture symbols on devices. For this, he can communicate mostly on his own, unless he gets distracted or is very anxious. When an autistic person is anxious, communication tends to fall apart. Text to speech functions have enabled him to speak in full sentences.
We are still learning. My point is that I am always learning to be an effective and patient communication partner. Reciprocal, social, open-ended, unpredictable communication is not so easy for him, and many other autistic people like him. While technology is a doorway, we can’t just open it without excellent guides, or without the commitment to keep at it for many years, even perhaps when it seems as if we are making little progress. When someone says to me that “Adam doesn’t type with me,” I immediately know that there is a lack of training or understanding what being a communication partner really means. It is an affirmation that the expectation and onus falls upon the autistic child — not the parent, therapist or teacher.
My hope is that, in addition to providing much needed resources like communication apps and iPads, we have better understanding and training to engage with autistic people as they are. Adam mostly communicates in metaphor. His language acquisition is unique and different than that of his typical peers. He could read and count by eleven months of age, but he couldn’t “talk” to people. Certainly he didn’t stop acquiring language or learning after that! As I’ve watched him over the years, I try to see the way he scaffolds his language and knowledge. His language and way of seeing the world seems mostly associative, symbolic and visual.
The iPad and other accessible technologies are encouraging in so many ways. I hope that the EEGs, FMRI’s and the other “proofs” we seem to require from autistic people in order to validate them, also lead to an enthusiastic desire to understand autistic people — their value, humanity, and of course, how they learn.
I’ll be participating in Autism Now’s webinar today at 2 p.m. EST and speaking about The Autism Acceptance Project and my life and journey with Adam. Anyone can register by clicking the link.
After being a little overwhelmed with goodie bags (and I’ll note that I have no need for the stuff so if someone is here and wants mine….come and get it), and loads of women fretting in hallways that Twitter was down for a bit today (I went for a walk), I’ve settled into my hotel awaiting tomorrow’s autism blogger panel and meeting some bloggers I’ve known for years but have not yet had the honour of meeting.
I am also quite interested in the other human rights bloggers that are here.
Keep ya posted!