Technology & Autism: We Still Need Acceptance

Filed Under (Acceptance, Capital, Communication, Computing/iPad, Parenting, Technology) by Estee on 05-02-2015

Adam is learning to become an independent typist so quickly now. While it makes me proud and happy for him because he wants to be independent (he has written so many times), it is really important to know that independence, for all of us, is an illusion.

First, Adam has been typing since he has been around 4-5 years old. Most teachers and therapists aren’t all familiar with how support can enable a non-speaking person to type (and possibly become independent). While we began early, we didn’t obtain the commitment from teachers who would not learn how to support him, in my view, because they didn’t understand the meaning of support.

When a person has many motor planning issues associated with their movement and speech, it can be very difficult to feel grounded enough to type. The purpose of support is to enable the body and the mind to ground (if you will allow me a metaphor). A support person also offers the emotional security in a task that is so challenging when the body and mind coordinate many different stimuli and tasks. We take for granted how we multitask, and how our bodies coordinate speech and bodily movements effortlessly. For Adam, he has expressed numerous times how he has required help.

The important addition in Adam’s life has been the support we had been looking for all these years; this means daily use of typing in all settings, almost all of the time. Adam now has access and support every day. As such, he has moved so swiftly in his ability and language expression that we are all confident that he is moving to more consistent independence.

However, I want to caution everyone here, for the emotional support of others may be needed, as well as patient and gracious listeners. Just because Adam can often type without physical support does not mean that he might now need another person nearby giving him the confidence he needs. Also, while the level of support may fade, some people may always require some level of support throughout their lifetime. In my own research, I’ve found that a generous and encouraging co-presence – of love and a presumption that Adam is intelligent and curious, has encouraged him. He has been very frustrated for how he has been treated over the years as a boy who hasn’t understood what is being said, and is eager to learn even though his day-to-day life may be challenging.

While the iPad has markedly changed the reception of Adam by others – providing Adam’s voice and enabling friendships and school work through text-to-speech technology (we use Proloquo2go) – technology is not a panacea. Too often, we make the grave mistake of thinking that if we push our children hard enough, they will learn how to speak or type, etc. “Just as long as he can communicate” thinking will not erase the experience of being autistic. Our modern notions of independence are skewed by a market-economy that demands that we, as parents, produce the most efficient workers. This is also proving to be a big issue as our autistic children turn 21.

The ABA movement, when it was nascent here in Canada in the 1990’s-present, presented itself as an early-intervention treatment to recover the autistic child. The idea that earlier (and quicker) is better, fuels parental desperation and fosters an inauspicious environment for learning. These therapies also promised parents that remediation was a passage to full inclusion in our society; that the only way to participate and contribute was to be cured of autism. Many a rights-based/legal argument constellates around the notion that to be remediated is a right; to be cured is a right in order to assure this passage to normality. All of these notions are based on a modern concept of an abstract citizen as it was formed by way of the Social Contract. In this, none of us are citizens precisely because none of us can pull our own way; we are all dependent upon one another for every cycle of the market, and for the function of our daily lives. Every rich man or woman has an army of support that enables him/her to earn that living – or production; as such one can deduce that all participants of production should be “owners.” It’s about who has the power over that capital, of course, that is called into question and is part of the discourse regarding social support.

What would it mean to think of autistic contribution and the desire to be autistic? Adding to this, can we think outside the box of productivity as we currently conceive it in modern economic terms? We have seen autistic contribution proved many times, in speaking and non-speaking ways, and perhaps it is this aspect, as having to prove oneself as normal (as possible), that troubles me. I want to call into question about how we all markate and market autistic contribution.

My interests are on how society expects autistic people to speak in “normal” ways as a passage to citizenship. As displayed in the film, Wretches & Jabberers, for instance, even when autistic people achieve communication, they are not considered full citizens; they are not included into schools or considered for employment. Here too we must acknowledge that in our society, there will be some bodies who have more material needs than others (Erevelles, 2011). How does the notion of achieving one’s “fair” or “equal” share leave out many people with significant disabilities? And what are we doing (positively and negatively) in terms of elimination of those bodies in the name of “equal” distribution?

Our questioning about autism and technology should be not just how it can make autistic people independent, but how we can change our views towards autistic people; and the right to support and education past the age of 21. Education is another system that supports economic output, of course, and needs to be reconsidered. Certainly we also know that for all of us, time-plus-experience enables knowledge. We need to provide education past that hurried (and hallowed) age of 21 and to grapple with the very troubling issues that confront us within our current system. All of these considerations may help us rethink our systems of support.

Just because we have new enabling technology doesn’t necessarily mean we accept autism. There are many contributions we all make to one another that are not counted as capital; that exist (and are valuable) outside the ledger. The ledger, after all, is a mere frame. We know there is always something left outside of it, and in this case, I am referring to a class of marginalized autistic individuals who are not considered equal because of economic potential. We need to think first about accepting autism while we consider how to educate and support autistic people with technology.

Reference:

Nirmala Erevelles, 2011. Disability and Difference in Global Contexts: Enabling a Transformative Body Politic. Palgrave MacMillan.

I Am In Here by Mark Utter

Filed Under (Acceptance, Communication, Community, Computing/iPad) by Estee on 08-08-2013

We met Mark this year; he was so sweet to Adam. Mark also wrote the script for this movie I Am In Here. Mark answered many questions after the filming of this, and Adam listened. Thank you everyone for your hard work. I believe we are getting to know how difficult it can be to learn how to type, to translate an experience into a language. Thanks to many autistic typists, so many kids are accessing AAC or learning how to type, and support workers are learning what support means in terms of autonomy. Thanks to typing, Adam is becoming a two-handed typist on some days. Some people will become fully independent and others will always need some form of support, and I certainly hope with a greater understanding of interdependent relationships, that support becomes better understood and accepted. I suppose the main message I would have for people would be: do we support people and enable autistic people by mitigating our proclivity to normalize (and over-value independence)? I think many of our practices are the taken-for-granted normate methods and attitudes that erase many autistic contributions. Are we supporting autistic people in order not to be frustrated, to self-advocate? I won’t go into the “system” which lays out how we value people and for what (such as productivity, independence) – in fact, I think these mechanisms are universal, except they are more difficult standards for disabled people to achieve, especially when they are not accommodated. I suppose any method could be used for normalization, and this is what we always have to be troubling; by thinking about autistic self-advocacy and autobiography as valid and primary information about autistic experience, and thinking of how our treatments, attitudes and supports can even affect these experiences. By thinking and talking about such topics, perhaps we can better support the community instead of rushing in to say how autistic people ought to be in society.

To Order the Film, Visit VSA Vermont By CLICKING HERE. Thank you, Mark!!!

“We Are A Critical Mass of Wretches” – Larry Bissonnette

Filed Under (Acceptance, Adam, Communication, Computing/iPad, Development, Inspiration, Joy, Uncategorized, Writing) by Estee on 16-07-2013

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.

Autistic Freedom

Filed Under (ABA, Ableism, Acceptance, Activism, Advocacy, Anxiety, Art, Autism and Intelligence, Autism and Learning, Behaviours, Communication, Computing/iPad, Contributions to Society, Development, Language, Law, Movement Disturbance, Obsessions, Parenting, Politics, Safety, school, Sensory Differences, Transitions, Wandering) by Estee on 26-06-2013

I’ve been thinking and planning with Adam’s team the next stages of his learning and doing our map project. Every once in a while, I got down the dark whole of blog comments and blogs that consistently regard autism, even its many complications and struggles, as inherently “bad.” The issue we have with thinking in these terms, although safety is an ongoing concern for many parents including myself, is that we think we can shape behaviour without truly understanding it, and that what we are talking about is bad behaviour. Behaviour is something that we can control, impulse and many disabilities are not constituted by the will of a person. So when we talk about shaping behaviour and “positive” behavioural support, we always have to question our subjectivity and how we’ve come to make sense of autism.

Given many of our children are not provided access to alternative communication support, and cannot tell us otherwise, and that it takes time and care for many autistic people to learn how to communicate (if they can), the Antecedent, Behaviour, Consequence (ABC) mode of tracking behaviour will remain problematic, and the very recognition of that can be helpful. There are often too many conflating factors that precede a behaviour so, while we do our best to interpret it, it is always difficult to claim one cause. Here I find that I’m needing to ask many different players in Adam’s life for information so that I can cobble together the best interpretation I can, bearing in mind that this is merely an interpretation.

So with recent events and noticing Adam’s propensity for visual memory, needing to know his environments, I continue to study maps and autistic art and will experiment how this might be useful for Adam. This is another example of the visual map I found by an autistic artist found at Drawing Autism: 50 WAtts. It’s part of my interest in helping Adam draw his own maps as a way of understanding his own environment. This means, I have to be careful how I enable and support him, and be in a continuous reflexive state of mind in terms of enabling versus prompting him which would therefore NOT be his own communication.

Felix: Imaginary City Map, Age 11

Here’s how the artist responded about the work:

What was the inspiration for this piece?

Generally I start drawing one street on different spots on the edge of my paper. I make the streets grow toward one another.

Who are some artists that you like?

None. I study road maps and atlases in detail and generally I scroll the full track of our trips on Google Earth.

I turn now to education in hopes to keep honing in and improving it when I think of Adam’s needs. Under the rubric of the Medicaid system in the US – a system that is already in existence – advocates seek more, or varied, habilitative services for autistic individuals. This is an important beginning within an existing system and we have to keep discussing the medical model and its effects on the way autistics are included and regarded as full citizens, or not, in society. In Canada, we also require more choices that fit with parental values and wishes for their autistic children, and this was addressed by Doug Reynolds in his paper for Autism Ontario: Looking Forward: Has Intensive Early Intervention Hijacked the ASD Agenda? The work of autistic people in this is valuable in how I think about Adam and his education and the extra supports and help he needs. Bear in mind, I write here a blog post, not an essay. Here are some of the ideas that I think about that I have not yet formatted into a paper.

To go on, if a parent wants an education for their autistic child, they should be able to work with a school to attain it using some key principles:

1) Respect for autistic identity and personhood;
2) Understanding learning at one’s own pace and an acceptance of it (as opposed to a linear model for learning and development);
3) Understanding and completion of complicated sensory profiles and the time it takes for accommodations to be put in place and,
4) recognition that accommodations frequently change and must remain flexible;
5) Recognition and acceptance of family-hired (which could fall under a direct-funding model from government support) support workers as reasonable accommodation in classroom – for transitions, programs, to help with accommodations and if needed, supported communication and whatever accommodation an individual and family might need to enable success;
6) Transparency by schools – to allow parents in for observation, to review class binders, etc. Considering many of our children are non-verbal, it would be good to not only communicate in binders, but to allow drop-in visits (even if a bit of arrangement is needed to respect others). This enables open-hearted communication and better accommodations.
7) Communication aides and technology and access to supported communication and devices as legal right to communicate as autistic people. As an example, an ABA therapist will often say “use your words,” thereby implying that an autistic child is stubbornly with-holding them. Considering the levels of frustration an autistic person has when they cannot communicate, do we not think they would use their words if they could?);
8) Recognition that most autistic people we name as “inconsistent” and “discontinuous” or “having regressed” is often a result of sensory issues and transitions, and that learning happens at unexpected rates. Sometimes, the teaching agenda must be put aside when an autistic person may seem “disregulated” and build back tolerance. An autistic person can often jump several grade levels in reading, for instance, and then appear to have regressed. This is not necessarily indicative of a regression so much as a need for a body to regroup. Therefore,
9) testing autistic people academically so they can advance grades must happen with re-presented formats, over many sessions, and then, the best result should be taken as an achievement of grade or pass so that the autistic person is not held back until they “recover” from autism to normalcy and thus never allowed to advance, or potentially restrict their pace and ability. To understand the seriousness of withholding education as a right, see Moore vs. British Columbia and the note that remediation may result in adverse effect discrimination because it assumes a person has to reach a certain level of normal performance before granted the right to be educated. Of course we want children to generalize skills and be as independent as possible or to achieve an 80% mastery, but often this concept of discontinuity is missed or misunderstood and education is held-back.

These have been my considerations of late and, and I support a variety of methods that befit a child and the combination of many may suit for different people and different situations, so long as they do not harm or torture an autistic person.

ABA is pretty much the only method which is used in Canada to remediate autistic people before granted access to education (particularly people labeled with Low Functioning Autism, who are non-verbal, or who have complex sensory systems). It can be a useful strategy also within a curriculum but it needs to keep examining itself from within and by studying autistic autobiography and potential effects of behaviourism on self-identity. I am suggesting that autism schools also need trained teachers in regular and special education and need to:

1) Be inspected by the Ministry of Education for meeting curriculum requirements (the adapatation and accommodation piece is an extended discussion);
2) Adopt other methods that we know help an autistic person learn through re-presentation of materials (see Judy Endow);
3) Be reflexive about the psychological effects of shaping behaviour and compliance may have on autistic individuals self-esteem and identity;
4) Learn creative methods and enable an autistic person to go on outings to educate not only life-skills, but other interests by using other methods and creative strategies. I remember one professor of an autistic child stating that when her son was interested (or people tend to label “obsessed” with asphalt), she took him to an asphalt factory.

Do schools undergo this kind of creative exercise for autistic children who, for instance, may bolt and may be so enamoured with routes and maps so as to learn something as opposed to controlling behaviour? Sure, we have to attend to immediate safety concerns, sensory regulation and building tolerance – these are important steps to an autistic person’s success. Yet my question persists – what can we do that teaches an autistic child to creatively channel their passions and proclivities? What are we telling an autistic child day-in and day-out about them when we ask them to “comply” to our agenda without enabling some of theirs? What is freedom if not mobility? Is an autistic person a slave to the performance of normalcy if they are not allowed to freely move their bodies in order to feel safe and secure? (See Judy Endow and Tito Mukhopadyhay). For instance, there is so much autistic autobiography about how autistic people need to protect themselves from over-stimulation – reverting to their iPad in order to be part of a group, squinting their eyes, or if they do not feel their bodies, they feel frightened and must flap their hands or lie on the ground in order to feel safe! If we are talking about “safety” how are we helping? To what extent to researchers and teachers use and take autistic autobiography seriously?

The other issue I need to bring up today is one of freedom of choice. What I find concerning about models of teaching for autistic people specifically is the judgement of some parents against other parents for choosing what they feel is right for their families and their children. It is not right to state that an autistic person has to undergo a certain drug or therapy or blame a parent or an autistic person. The freedom of families as well as autistic people is at stake, and while I wish to trouble this, I realize this has many angles and complexities within such a discussion. Some autistic people feel a parent agenda, if it is one of just becoming normal without critical regard, can result in problems when autism is seen as a disease that requires potentially harmful remedies. So by no means is this discussion an easy one, but there is no freedom if Canada only presents and makes available one kind of service. In short, Canada, with an autism agenda led mostly by parents, needs to consider what it’s building and its long-term effects. There needs to be choice for families, a respect for values and an invocation of substantive equality in our systems.

Here I wish to close with an opening – with the words of Melanie Yergeau, autistic, from her essay, Socializing Through Silence:

“My silence is in fact a compliment. It means that I am being my natural self. It means that I am comfortable around you, that I trust you enough to engage my way of knowing, my way of speaking and interacting.

When I dilute my silences with words – your words, the out-of-the-mouth and off-the-cuff kind – I often do so out of fear. Fear that my rhetorical commonplaces – the commonplaces that lie on my hands, sprint in my eyes, or sit nestled in empty sounds – will bring you shame. Fear that my ways of communicating will be branded as pathology, as aberrant, as not being communication at all…This isn’t to say that my use of your language is always a product of fear. There are times when I genuinely want to use it, understand it, and learn about and from it. I understand that speaking is how you prefer communication. I understand that speaking is how you best learn and interact…

But the burden can’t always rest on me. I have a language too, one that I take joy in, one that I want to share. And when you deny me that – when you identify my silence as a personality flaw, a detriment, a symptom, a form of selfishness, a matter in need of behavioral therapy or ‘scripting’ lessons – when you do these things, you hurt me. You hurt me deeply. You deny me that which I need in order to find my way through this confusing, oppressive, neurotypical world.”

— From: Loud Hands: autistic people speaking, pp. 303-4, The Autistic Press.

Now, how can we respond?

Personal Interest and Academic Reserach

Filed Under (Activism, Adam, Advocacy, Autism and Intelligence, Communication, Community, Computing/iPad, Critical Disability Studies, Living, Politics, Writing) by Estee on 28-05-2013

The end of the day of Adam healing from the croup and us both watching repeats of Wretches & Jabberers for my thesis. Adam can’t help laughing at the scenes of Naoki jumping up and down to Rimsky-Korsakov’s Flight of the Bumblebee – flapping his hands, moving the window blind from side-to-side, opening and closing doors, and running up and down the stairs to then, finally settling at his computer utterly focused and well, communicative. I can tell Adam’s feeling better as he giggles and then afterwards decided to do some puckered-lip kissing practice on my cheek.

Watching these clips from YouTube are also very important for anyone wanting to discuss it. I would imagine we’re all concerned about Tracy’s living situation and want that to change. As I write an academic paper about a subject that I am personally invested in, I also feel a responsibility to my son’s community. I am also selfish and grateful at the same time – selfish in not wanting Adam or anyone like him to have to be in Tracy’s position as well as inordinately grateful to both Tracy and Larry and their supporters for going out into the world to do this work. We are all motivated by personal circumstances which enables our emapthy. I am hoping to articulate my personal interests and vulnerabilities in my own academic writing, where one is otherwise supposed to be, in a traditional empiricist sense, emotionally removed and (supposedly) objective. Others have discussed this as well – Behar in The Vulnerable Observer, and Douglas Biklen in Autism and the Myth of the Person Alone and recently this new paper by Andrew Bennet in this issue of Disability Studies Quarterly discusses the possibilities of our mutual vulnerabilities – as researcher and research participants.

I really appreciate this clip that comes in addition to the film, as I wanted to know more about Mr. Thresher’s situation. I don’t live in Vermont, but I do think that the issue should be a politically active one here in Ontario as our autism societies take up adult autism issues. How can we enable autistic people to advocate on their own behalf for their own needs? How can we support them? This film should be shown at every chance in discussing positive living situations outside of institutions and segregated shelters.

I also work hard to get Adam to type and use AAC and seek people to support Adam. It is frighteningly slow for people to believe that Adam can understand, read, and have the ability to type and both of us need more support that is difficult to find here in Ontario. I’ve been writing this blog since 2005 and been telling people he could read words, numbers and book spines since he was 11 months old. I find it really frustrating if some verbal behaviourists teach him the word “cat” over and over again so he can say it correctly when he’s been reading it since before he could walk. The autism curriculum must change to include education and academics in its programs to be truly supportive of the autistic person’s right to education.

In terms of typing, his school will support him visually, and I think because of the time I’ve spent typing with Adam with support, that he is able to type to some extent at school without it. Yet I think with better support he could do better there and I’m trying to teach people myself. If you are a parent, you know this is a labour. However, I can’t understand any longer, as Adam and I have also been informally tested (yes, that’s the doubt people have about autistic people) that Adam’s communication is his own, and that with the right kinds of supports and teaching, he could communicate better by typing. This is seen in the same way deaf sign language was once denied to deaf people in favour of lip reading and speaking. Yet, communication is also a right. To deny a person with a communication disability such support and access will become an issue for law and policy, but our important work for now as activists and educators is to keep showing the work of autistic self-advocates, such as Larry and Tracy, as well as autistic people who are prolific bloggers and writers, and to keep breaking down barriers within our own homes, communities and schools, one person at a time.

My last thoughts for the evening: Isn’t it better to support an autistic person in their autonomy rather than to fret about what level of dependence they are going to have on their families or in group homes? In other words, isn’t the support of autonomy and our mutual interdependence a much more empowering prospect for us all? (I have to add, I am not intentionally favouring those who are able or have the desire to type or use AAC. There are those who are not able to use it and we have to consider the people missing from this dialogue).

Part of my work wonders why such doubt exists regarding Adam and why we’ve had to struggle with so much resistance with educators and clinicians. I do think that Adam, like other autistic people, will dispel the doubts. But I also wonder if we have to ask ourselves what or why we doubt, exactly? What do we fear if people with communication disabilities can communicate via other means? Is this the right question?

The Autism “Spectrum,” Assessed Identity, and Supporting Access…some thoughts

Filed Under (Acceptance, Adam, Autism and Learning, Communication, Computing/iPad, Identity, Spectrumism) by Estee on 16-05-2013

This photo is of Adam with his Grandma.

I know I don’t write about Adam that much these days. I’m always caught in ethical considerations about his right to privacy and protection versus the benefits of sharing stories. I work a lot with autistic adults theses days as well (am always grateful to have them in our lives and realize how sharing of information and differences of viewpoints benefit us all), and I also work and play every day with Adam. I juggle between my studies, re-growing work with TAAP and as his mom – teaching him after school when I can. Single motherhood brings it’s own worries – am I giving him enough? What would happen if I get ill?, among many questions. I do the best I can and I have to accept my situation. As usual, I digress…

Adam is typing on his own now, is becoming a trampoline champion with an excellent coach, and has a friend. The challenge and sorrow, when I feel any, is the isolation by comparison to other children, or quite frankly, the concern I feel when people ask me questions that are proliferated by the media about how “functioning” Adam is. When people ask me about Adam’s functioning level, I get to ask in return why that matters to them – I think it’s important to ask others in order for them to think about it deeply. I then usually respond that I love Adam as he is, and go on about what great person he is. Functioning levels are arbitrary assessments made by subjective observation – by an individual who thinks they know something about autism, but in fact, just follow a set list of criteria that continues to change. Frankly, the most valued professional advice I would receive is the answer “I don’t know” and someone who considers Adam’s unique needs and strengths. Also, permit me to meander, it should never be an assumption that autistic people prefer to be alone. This is not fair – all autistic people are different and most express a profound loneliness. As for spectrums and functioning levels, this discursive dialogue must end if we truly value all autistic people.

In other words, there are no prognostications that are accurate. Ask any autistic adult and read through their psychometric assessments and old IEP’s and they’ll have plenty of comments – none of them positive. In fact, I am very concerned about the material reality these stacks of binders (recording bowel movements and the like) get absorbed by an autistic child regarding their identity and later, their self-narrative. I often think of taking all the binders I’ve kept over the years, papers, assessments and do something with them – no not burn them – but make an installation regarding this question: Shouldn’t we as parents be concerned about a forthcoming identity crisis as our children are told what they are by a mere label that describes virtually nothing about person-hood and individuality? If I could turn the clock back eleven years, what would I change?

I support Adam’s development and person-hood – his right to access and individuality. Further, and I have to keep saying this, it disappoints me when autistic children are not allowed to go to various programs with an aide worker. An aide worker enables many to contribute, work, participate, and feel a more a part of our community. While I cannot predict what level of assistance Adam might need when he gets older, for instance, this is besides the point – the issue is the right to access. Our autism committees and charities and governments must start considering these rights as opposed to simply believing that autism can be cured and kids can become normal with enough therapy. Instead, when we consider the value of people, we have more chances of seeking education after the age of 21, opportunities for vocational training, college, and university. More creative strategies for living situations can be considered such as co-living, assisted independent living (therefore interdependent living), micro-boards and aide workers and educators can also be treated with more respect as valuable assistants to autistic individuality and right to choose. Strategies for the latter entail visual supports, AAC, extended time, patience, teamwork.

Back to Adam…he is partially verbal and this is growing every day now as I watch him also grow taller. He is enabled more as he types a first word which seems to prompt the rest of his sentence. Some days he’s more chatty than others, which seems to be common for many partially verbal autistics. Through patience and repetition, Adam has begun to take care of himself. Adam can talk on the phone a little longer, dial his grandparents, get dressed, brush his teeth, and ask me where and what questions verbally, that is, on the more verbose days. I guess I’m saying this for all the years of misunderstandings by parents that autism acceptance means just letting a child sit around all day and do nothing. This to me is also an ableist concept which presumes that autistic people can’t do anything at all when the truth of the matter is that everyone has a different situation and we address each child uniquely and with respect.

I think many teachers and coaches have enjoyed their own teaching successes with him. I also think parents must work harder to readjust their expectations to support education and inclusion. Teachers cannot succeed if we have unreasonable expectations of normalcy and, as parents, we should be startled at this word as it discriminates our families. As we accept this we should also not accept the unfair exclusion and segregation of autistic children and the lack or regard for their education! In this, education will also have to adjust and I expect it will as computerized learning is becoming more popular – where children can be taught online and monitored and facilitated when needed. The potentials of the Internet and computers have not yet been fully tapped and could change the face of individualized education as well as citizenship. As commerce takes place online, we are also looking to the Internet for online voting – the last bastion, arguably, of citizenship. It was Singer (1999) who said “[t]he impact of the Internet on autistics may one day be compared to the spread of sign language among the deaf (1999:67). Alas, however, let’s not segregate autistic children into a room full of computers. We all need human interaction. Also we need to consider this by Alison Sheldon (2004):

“There is a small but growing body of work within disability studies that emphasizes technology’s ‘double-edged nature’ (Oliver, 1990) and stresses that it can be ‘both oppressive and emancipatory, depending on the social uses to which it is put’ (Gleeson, 1999:104).” (Sheldon, 2004: 157).

Sheldon suggests that some of the barriers to access include its cost. “We must not be distracted…into denying the socio-structural origins of the problem. Access to technology is not simply a technical issue with technical solutions. The inaccessibility of technology is just one more symptom of disabled people’s continuing oppression.” (157).

Also, to balance this drive towards access to technology, Sheldon states:

“…in the current political climate, the increased use of Internet technology as a means of disseminating information may have adverse effect on other means of information provision. The unconnected majority of disabled people may find that accessing information (and indeed other consumer goods) in traditional ways becomes even more problematic as these facilities become available online. Thus, the Internet is not a panacea that many suggest. There is still a need for appropriate and accessible information to be disseminated to disabled people in other ways, or the disabled community may simply become yet more polarized.” ( 157).

As I suggested when the iPad became popular for autistic children in schools, we cannot expect it to replace teachers, parents, the knowledge to teach autistic people how to communicate by AAC and/or supported typing. Technology should not become another means to segregate.

Finally, to end today’s ramble, it’s time for us to reconsider the spectrum concept. It’s based on a hierarchical system of who is better functioning which is discriminatory in so far as it implies whose life may be more valuable than others. It effects the way we educate, include or exclude, and keeps autistic people from obtaining fair treatment and equality of well-being. And, after all, none of us can predict the future and autistic people do not “fit” neatly into the high and low functioning paradigms.

References:

Sheldon, Alison.(2004). Changing Technology. Disability Barriers – Enabling Environments. (John Swain, Sally French, Colin Barnes, Carol Thomas, eds). Sage Publishing.

Singer, J. (2003). Foreward: Travels in Parallel Space: an invitation, in Miller, J.K. (ed.) Women from Another Planet: Our Lives in the Universe of Autism. IN: Dancing Minds, pp. xi-xiii.

Verbose Adam

Filed Under (Adam, Communication, Computing/iPad) by Estee on 25-04-2013

I have to write so much for school that I don’t often get to write about daily life in a few rambling sentences. Spring is here, the pool is open and Adam, after his 11th birthday has had another burst of verbosity – forced out single words, a phrase, but lots of telling me about things at school or how he’s feeling. It’s particularly enjoyable when he says words I would have never imagined were in there. But like Anti says in Wretches & Jabberers, I think Adam is made of words, at least I think it’s neat to think of it this way; despite the difficulty of expression, he’s got thousands swimming in his head; it only makes sense since he was reading them, sometimes out loud, while hanging on the side of his playpen, reading the titles of the book spines on the shelf.

We’ve been typing every day – from stories, play and he types a lot at school on his own, and I want to keep showing others how to integrate this into most aspects of his day. My dad keeps a running video log when he sees us working, Adam’s Speech Language Therapist (SLP) keeps photographing us at work. I keep thinking I’ve got to put this together so that other people can also see it – and show how when Adam just begins typing a sentence, he can then get it out verbally just by typing the first letter. I’ll pull out my single-mom card now – my plate is so full and I’ve got so many projects on the go; this is one of them. Focussed, goal-oriented typing seems to have had an effect on his ability to focus and planning to say the sentence, and this is becoming like his own “prompt.”

I’ve just finished a long lit review for my thesis on Wretches & Jabberers and I’m reviewing a few articles for the Canadian Journal of Disability Studies. I hope to spend more time coalescing the past few years on the topic of language, affect and typing and how I’ve played a part in Adam’s as well as how his autism school has cooperated when this method is not specifically integrated into their program.

On the iPad and “isolation” in The Toronto Star’s “Autism Project”

Filed Under (Communication, Computing/iPad) by Estee on 14-11-2012

I just want to make a brief comment regarding The Toronto Star’s reference to how iPads are changing the face (or might) of the education of individuals with the autism label. Briget Taylor was quoted as stating that the iPads could increase isolation of children with autism. I want to break that down a bit. I’m not sure how that quote may have been taken down by The Star. Here are a few things off the top that jumped out at me immediately.

Before I do, here’s a brief background that has shaped my view. Prior to the advent of the iPad, I began teaching Adam how to type on label makers, computers and the Alphasmart Neo which is simply a lightweight qwerty board with a small screen. Teaching Adam how to type with support was difficult for all kinds of reasons (many of them motor-planning ones), but it has enabled his emerging independence. I need to keep learning how to support him and I’ve been at it for a few years now. I also take the advice from others to help me and we share information. If you click on technology and communication tags on this blog, you will see some of my posts which talk about this more. It’s a process.

The iPad (and computers and the Internet prior to the iPad) has enabled”voice.” That word is used very often because we don’t have a better one as of yet. Many people see it as problematic as “voice ” implies capacity, intelligence and competence (and independence) coming through the verbal. The deaf community has made plenty of references to this and it is still used in Verbal Behaviour today — “we have to teach him the power of words,” in terms of discussing ways in which to motivate autistic people to speak (even if they cannot). So, we might want to consider this in terms of autism and social justice and human rights overall, but this is not what today’s post is going to talk about today.

When thinking about the iPad and how to use it as a teaching tool, and an enabler of self-expression, how can we consider it as a supportive of autistic agency? I put that question up because I am worried it will be seen as a panacea for creating nomates, and we have so much difficulty accepting (or understanding?) human difference.

The idea that the iPad will isolate autistic children as Ms. Taylor was quoted, presumes that autistic people are, or want to be, isolated. It harkens an “ideal” way to be human — to be an adept social (typical) communicator. It also builds upon the notion that autistic children are “locked in their own world.” I think we have to be very careful in talking about autistic people and locating ourselves while we do. When making statements like that we are talking from a different standpoint. When I write about disability, I am also writing from an outsider standpoint with a view that I need to always question my own thoughts and ideas about what it means to be human.

I do think teaching social skills, among other skills is important, but it’s not an end in itself. We still have to address autistic difference which also can mean different ways of being social. Sometimes, Adam needs his time alone on his iPad. He needs reprieve and he is teaching himself by discovering. When he’s had enough, he can also be very social, in need of people. He loves to play. Like all of us, we need down time, right? Further, autistic individuals who also use programs like Second Life, the blogs and other self-advocacy organizations to socialize. Now we are all on Facebook (okay most of us) and other social media. As autistic people have written valuable books and blogs that have helped our understanding, I would like to see schools hiring autistic people to enable education.

So, I don’t think the premise that autistic children will be more isolated is a reason to limit iPad use, necessarily. That premise is used by some university professors who don’t want screens in their classrooms. Based on limiting screentime-arguments, how could a person with a disability who needs to use a computer be able to participate, attend university? Isn’t that isolating? That is what concerns me with the quote as written in The Toronto Star.

Instead, how can we consider how to use the iPad to enhance learning opportunities for autistic children and further, how can we transfer the learning on the screen to learning in real time and space? Can autistic people shed some light here? What is a preferred autistic social style or “space” (I assume it is varied)? I find socializing sometimes exhausting. I can imagine that for many autistic people, it can be much more difficult. Now that we have an amazing tool, we have to still do the work to learn how to teach to autistic strengths with it. We have to recognize and respect the differences. We have to be supportive and we need autistic people to help us.

~~
Omom22 has commented on The Star and iPads here.

iPads, notepads and a note about teaching methods

Filed Under (Autism and Learning, Communication, Computing/iPad) by Estee on 07-08-2012

Adam’s iPad wasn’t working for a few hours over the weekend. It has been also phasing in and out — photos disappear then reappear. He uses his camera for his Pictello stories.

Meet a non verbal person — autistic or otherwise, and you’ll see an array of devices at their disposal. Some are more convenient to talk with, often one conks out or something happens. It’s technology. We need more than a reliance on the iPad.

I love the iPad. I’ve been teaching Adam to read a clock on and off for a while now. A sole reliance on “verbal behaviour” or output is not reliable. I had asked Adam to tell me the time. Now that I have the iPad, there is a “show me 4:30,” etc, and he can pick from an array of five possibilities. He gets 100%. I do, however, have to tell him to “pick only one.” That instruction works like a charm as he then understands that I’m not asking him to fool around and listen to kurplunks of wrong answers just for the fun of it.

I work between the iPad and the “hard copy.” The iPad and computer programs are very helpful to teach and now to refine Adam’s ability to listen to the instruction. As his part-time teacher, I model the correct response for him, and this makes it easier.

I’ve often noted that multiple choices are the way to go to determine his knowledge, as well as presentation. I believe Adam has taught himself many “subjects” and I get this confirmation every day. Here’s another example:

I used to ask Adam to do word searches with me on paper. You have to read the word and find it in a jumble of letters across, down or diagonally. Adam would seem never to be able to do it. Now on the iPad, he scans and finds the words faster than I can. I didn’t know he knew how to do it and I used to think he didn’t understand when it was just those paper-kind of word-searches. I also consider that having to draw a circle around a word was very challenging for him. He is still working on his fine motor control. I think about all the effort it must take to circle a word, that then that becomes enough. That action in itself distracts from the actual word search game. It’s like asking a non verbal autistic child to “tell time.” It’s just so hard to get out, then when the answer comes out, it may be incorrect.

Another anechdote from the movie The Brain: A Secret History (the title of the episode here reads “The Broken Brain” so I’m going to ignore the ignorance of that title for that is a social judgment of that which we still do not fully understand) A brain injured patient is asked to show, on his fingers, what number is being shown. On his fingers, the individual answers correctly by showing four fingers. Then, he is asked to say the number he says six. It’s to me, exactly the same thing that happens to an autistic individual with verbal communication challenges, well, of Adam anyway. Often he knows the right answer but he just can’t say it, or it comes out as the wrong answer.

I know that teaching has to be fun and interactive. I’m now at a stage where I’m going to have Adam tell me all about a story he has read with me. After that, I’ll be working on some narration of his own. It’s a process of picking up what I’ve read, using what I have at our disposal, some common sense and love at watching him grow and develop. Over the course of this summer, I’ve also noted that when we educate autistic children, we forego the academics for controlling the behaviour. I’m starting to believe again that attention can be accomplished through active engagement, following the interests of the child, no matter how “odd” they may seem, and building the necessary skills this way through visual suppport, parental and teacher support, love and yes, devices. Feel free to add to this list.

The iPad reminded me that to rely on it alone is risky. We need the support, back-ups and a variety of presentations that help with learning and communicating.

Towards a New Autism Research

Filed Under (Ableism, Acceptance, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism and The Media, Autistic Self Advocacy, Book Reviews, Communication, Computing/iPad, Critical Disability Studies, Development, Discrimination, Family, Movement Disturbance, Research, school, Sensory Differences, Transitions) by Estee on 06-07-2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A Whole Better World
Autreat, May 2000,
Clay Adams

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

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

Normally Autistic

Filed Under (Autism and Learning, Computing/iPad, Development, Parenting, Play) by Estee on 24-05-2012

Adam had dental surgery this week and I’ve caught a cold. As we’ve both been recuperating on opposite ends of the couch — me with my copy of Betty , The Fountain of Age, and Adam with his iPad — I’ve been thinking what I saw at IMFAR and what I read on Facebook, and all the articles I read about autism. All that fretting and advice on what to do and what not to do, parents can drown in this stuff.

I offer a small insight to keep us afloat.

One of the sessions at IMFAR was about how the use of computers is bad for autistic children because it takes away from socialization. We seem to really fret about keeping our children engaged all of the time, and we particularly target the autistic ones. This post is about just letting things be some of the time. As I tell everyone these days, we are “normally autistic” around here.

During our last two days on the couch, Adam keeps checking in on me. He smiles, he tells me his ears and mouth hurt (his words). In between watching meaningless movies to eat up the hours, and when I have the energy to re-read Betty’s take on the media’s representation of the ageing population as a “burden” (ugh), I’m watching Adam and how he uses all this free time.

He’s cuddly, he has watched a few meaningless videos, tutorials on YouTube on the game Mindcraft, and he has been making up his own words on his iPad — “hotgod,” and “iceswim,” among others. He’s checked out his math programs, and tries hard, without my prodding, to draw shapes on it (he is particularly challenged with fine motor here unless he uses a weighted pencil). My child who required supported communication and who was once “a sight reader,” now spells phonetically and types independently. My child who has limited verbal ability can navigate Mindcraft and the Web. My child who “needs to be engaged all the time,” has used his time, well, pretty much the way I have.

I wish I could remember my own words and thoughts when the world beats in and makes me fret that I’m never doing enough for him, just because he’s autistic.

ads
ads
ads
ads

About Me


ESTÉE KLAR

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.