Emerging Tensions: Puberty, Autonomy and Safety

Filed Under (Aides and Assistants, Anxiety, Autism and Learning, Behaviours, Communication, Development, Family, Identity, Inclusion, Intelligence, Living, Love, Movement Disturbance, Obsessions, Safety, school, Sensory Differences, Single Parenthood, Transitions, Travel) by Estee on 13-12-2013

It’s the end of the term…I need a long break and so does Adam. His anxiety went up as soon as the clocks turned back. The darkness brought about a new mood, Adam’s ticking went off the charts and he started a new tick – a screaming tick. He wasn’t happy – he couldn’t stop it as the pressure mounted on him to stop. I felt pressure in trying to help him, because let’s face it, screaming disturbs the peace. It’s alarming. With it, Adam’s flight-fight prompts him to bolt when he sees pathways and stairwells. These are all the signs that Operation Calm Down had to be put into effect. By virtue of naming it so, it’s not the first time we have implemented it.

Dad took Adam on a short vacation and this allowed me to have one too. On my yoga vacay, I met another dad with an Asperger’s son. He too mentioned that his son ticks and these anxiety attacks, let’s call them for now, make it difficult to get back to schoolwork. His son’s grades are going down, he said. So too, autistic autobiography reiterates the length of time it requires to self-regulate…sometimes days. Although I’ve been busy with PhD study, I realize the patterns of Adam’s distress tends to be at regular intervals during the year, and after sickness. Now that his body is changing as well as his needs, I am considering a leave-of-absence to help him, but also to help myself in so doing.

In thinking of Adam’s life and the very complex anxiety he has, his motor-planning difficulties, his frustration so apparent as he tries so hard to talk (the other day he got so frustrated, he picked up a pencil and in his chicken scratch wrote that he wanted to go to “gramma’s house”), we can’t always expect a learner like Adam to spend day-after-day exactly the same. The seasons change, there are new anxieties in life and we all need breaks. This is one of the most fundamental obstacle I can think of in how we teach children in general – in chairs for too long, in small rooms, with little outdoor exercise because of liability issues. It’s not one person’s fault, per se. It’s how we’ve built our society. We live in cars, in buildings and we don’t get out much. If Adam had an outdoor learning environment as a major part of his learning experience, I think he would be able to take in much more (outdoor education is decreasing but can be made accessible to people with disabilities). In the summer with lots of activity, for instance, he can talk more – and this is a feat for someone like Adam.

It is therefore very difficult to be talking grades, assessments, intelligence and so forth without recognizing that, living in the settings that are the way they are, that my autistic son will be delayed in his learning. The focus is far to much on intelligence (or ideas about intelligence) rather than somatic knowledge, difficulty and other ways that we can learn. I know this because when Adam is “on,” and there are adaptations to his learning, he can learn. I am writing in these terms because when looking at sites or articles about autism, the terms and ways of thinking about intelligence and learning are so “matter-of-fact” or normalized that we forget about how other kinds of learning can take place. This makes so many people, the forgotten ones. In essence, I’m trying to move away from a linear model of development and learning which doesn’t work for many people.

When the body has to spend so much time readjusting and becoming comfortable, the rest of the school work (at a desk in a chair…) has to be put aside. It would be wonderful for schools and educators to think about this a little more – to integrate movement into every aspect of the day including field trips and outdoor activities – even in inclement weather (my parents never protected me from it). I fear with our autistic children in Canada, that we are growing more back towards re-institutionalization in a different costume; we segregate and we isolate in order for our kids to be “safe.” In this, I appreciated mother and author of the book Spark, on her autistic son, namely, her “philosophy of muchness.” Never stop exposing (even with ticks, flaps and screaming) autistic children from many things – theatre, music, the outdoors, and accept the difficulties and make room for them.

We need to change the way we look at the length of education – since not all bodies cannot finish high school by the age of 18 (or 21). What other modes of education might we employ? Considering this is not as much an “intelligence” issue (I hesitate because I do not like to promote intellectualism which I find further separates people) as much as a somatic one.

Which leads me to some new revelations for me as a mom: that Adam’s “voice” is a part of his growth. It’s hard on me to watch him in a kind of pain from which he can’t escape (sometimes the ticks are a loop he can’t stop and sometimes they are willful – one “behaviour” can serve many different purposes) but also, I want so badly to give him the tools he needs so he can gain some latitude in his life. His life is so restricted with people always watching his every move – and this is, as I mentioned, for safety reasons. I often wonder, if given a great expanse of land to explore, could he feel better? What will his choices be for how he needs and wants to live his life? How can we support that? How do we stop protecting (or at least let up a little) in a dangerous world? I am certain some of Adam’s stress comes from having very little autonomy, and although he is strong and willful (which I believe will bode him well), if you can’t communicate fluently in our society, or you can’t cross the street by yourself, your autonomy is limited. This, of course, is where the concept of supported-decision making and assistance comes in, but assistants (and parents) really need to understand this and how to be good listeners (for some reading, look to Val Williams’ conversational analyses between caregivers and non-verbal individuals). Think of the life-skills training in addition to the education that our children also deserve. This takes more time than the allotment prescribed during the Industrial Revolution. I mean, it’s time to move on.

Then there is the need to reconsider how we look at behaviour from the outside. This is a problematic approach because we cannot know how Adam feels on the inside, yet we have lots of autistic autobiography to help us. When we tried redirecting Adam with a behavioural approach, this enraged him – he smashed himself into the couch and crumpled the paper from his Zeotrope in his little fists and threw them to the ground. The basis of this was to get Adam to stop screaming, but it did not account for the fact that he perhaps could not stop. This is the same for Tourettes (which I think Adam “has”) in that if you call more attention to the action, it will increase it. Instead, deflecting to relaxing activities seems to help more in addition to the sensory (deep pressure) that Adam needs.

An and calming approach worked much better than a behavioural one – this is what has to be done before we can teach any lessons – social and academic. Social stories and cognitive behavioural training are now a part of Adam’s week in addition to us seeking more adventure for him – rock climbing, circus arts and swimming. For CBT, another boy character is inserted into social stories to take the attention away from Adam. This way, Adam can relate to the character without feeling targeted. I gleaned this from reading Donna Williams’ Exposure Anxiety, which makes a lot of sense where Adam is concerned.

I fully believe after 12 years of being with Adam that seeking cooperation through engagement is our obligation, not his because he is still learning. He is a child who wants to learn, but we can’t do that by mere compliance. He complies when he is respected and engaged and also knows the rules (teaching boundaries respectfully will be our new challenge). I’ve started teaching three key concepts in various formats and in daily life to Adam – cooperation, patience and gratitude. In teaching Adam these concepts and ways to enact them in daily life, I also have to do so towards him. I’ll let you know how it goes.

Puberty will be challenging for Adam and for me. I am protective mother noticing the need and beginnings of separation. On the one hand it seems that Adam needs his structure and certain environments especially when he is feeling uncertain. On the other hand, he is truly becoming a teenager who is showing more signs of frustration and wanting to expand his world (this is different than bolting or escape but could be sometimes related). These may always be competing impulses in him, I don’t know. All I can tell is that they both exist within him. How do I give Adam boundaries and his own need for control over his own life now and ensure his safety? I’ll keep you posted on how this goes too.

Autistic Teenager Tipped for Nobel Prize

Filed Under (Autism and Learning) by Estee on 22-11-2013

It is important to remember what autistic people can do in light of my previous post this morning of autistic people being confined to the isolation rooms and separate schools. Imagine the emotional and intellectual starvation of most autistic children who live in isolation or in segregated schools which only educate the “lower skills.” Not everyone is a Nobel Prize winner, and creativity can take many forms. Non-verbal, “behavioural” autistic people are always thinking, even when they “look” autistic (and looking autistic shouldn’t be judged as negative!). This is important for every parent, educator and friend to remember – even if the skill isn’t translated into normative language. This mom’s philosophy of muchness is rich and beneficial and I agree with her 100%. Let’s keep listening. Let’s keep providing opportunities for autistic people:

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?

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.

A New Kind of Autism Lobby: A Proposal

Filed Under (Ableism, Acceptance, Activism, Advocacy, autism, Autism and Intelligence, Autism and Learning, Charity, Communication, Community, Critical Disability Studies, Language, Organizations/Events, Politics, The Autism Acceptance Project) by Estee on 09-05-2013

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

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

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

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

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

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

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

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

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

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

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

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

Sarrett further states that,

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

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

Reference:

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

The Adam Family

Filed Under (Ableism, Autism and Employment, Autism and Learning, Communication, Critical Disability Studies, Family, Inclusion, Inspiration, Joy) by Estee on 10-09-2012

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

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

(Wikipedia)

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

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

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

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

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

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

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

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

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

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

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

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

References:

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

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

Barriers to Information and Communication Technology

Filed Under (Ableism, Activism, Autism and Learning, Communication, Discrimination, Inclusion) by Estee on 21-08-2012

Tagged Under : , , , ,

ICT = Information and Communication Technology

School is fast approaching and some autistic children get access to inclusive schools and others do not. One of the barriers to inclusion is access to technology and other supports that can enable and autistic person to participate and become successful. Many camps and schools have boycotted the use of iPads for fear it detracts from a student’s attention. Some schools prefer “traditional” methods, and argue that technology takes away from that experience.

In the case for inclusion and access, these are some of the antiquated attitudinal barriers we must work to deconstruct. Many non verbal autistic individuals, and other autistic individuals who learn better with computers for visual reasons as well as reasons to do with less distractive stimuli that can impede learning, need technology (and other accommodations) not just for school, but for vital communication and everyday functioning.

In an effort to break down barriers to access, “The Council of Canadians with Disabilities (CCD), a national organization working for an accessible and inclusive Canada, recently consulted people with disabilities about ICT use and recommendations on barrier removal and prevention.” Although there is a duty to accommodate, most schools and camps will not do so, especially for the autistic person. Here’s some more examples:

Stumbling Blocks

Although accessible ICT is available in the marketplace, it can take an incredible amount of self-advocacy and persistence for an individual to obtain it. Doreen Demas, who has vision impairment, discovered this when seeking an accessible cellphone from the Manitoba Telephone System (MTS). For customers without a disability, acquiring a cellphone that meets their needs is a relatively straightforward consumer activity. MTS’s original offer to Doreen was an inaccessible BlackBerry. Over a period of several years, it took numerous frustrating sessions with MTS representatives and a complaint to the Canadian Radio-television and Telecommunications Commission (CRTC) for her to obtain a contract, with reasonable terms and conditions, for an accessible iPhone. The CRTC has a policy requiring that Canadian cellphone service providers include an accessible product in their catalogue of devices on offer to the public.

Some post-secondary students with disabilities encounter barriers related to ICT. While a student intern, who requires large print, may be most comfortable using a particular program to enlarge text, the intern’s field placement agency may think it is reasonable to expect that person to use whatever programs are available on the in-house system. Although educational institutions and employers have a duty to accommodate disability-related needs, individuals continue to struggle to have such accommodations provided.

The other barrier is poverty. Most of our disabled population, due to so many barriers to employment and educational institutions, end up living beneath the poverty line. This also make access to essential communication and technologies expensive:

Like everything in the marketplace, ICT comes with a price tag. People with disabilities experience a disproportionate level of poverty. People with disabilities of working age are about twice as likely to live on a low income as their counterparts without disabilities. “There is the assumption that everybody can afford a computer. That’s an assumption. It is not a fact,” says Marie White, Chairperson of CCD’s Social Policy Committee. “Our most challenging issue is poverty.” Some people with disabilities face additional costs because they have to buy ICT, and they also must purchase adaptive technology to make inaccessible technology usable. In some provinces, provincial programs provide people with disabilities access to technology.

While some autism organizations endeavour to provide some grants to autistic people for access to iPads and the government subsidizes other communication devices, there are wait lists and rental fees can still be expensive (you can seek some assistance through the Ontario Ministry of Health and Long Term Care).

For Adam’s sake and like many other parent advocates, I’ve had to learn a lot about AAC (Assistive Augmentative Communication) and how to use it by myself through courses and “old-fashioned” book-learnng. In turn, I train many of Adam’s teachers and support workers in his use of the iPad and with typing. Finding SLP’s trained well in the field is difficult but necessary, and there are a precious few who do it exceptionally well. While SLP’s are typically trained in “speech” functioning, there is tremendous value in their teaching to the ways and means of autistic communication, literacy and the use of devices for advancing skills. The device is often referred to as the individual’s own “voice” or “talk box,” and should be treated with the same care and respect.

It’s tough to still get people on board at the school level, to see devices as a necessity for many autistic people, and to include them with the same value and respect as we would the voice of any other child.

I hope you have some success in using this information when you approach the school boards and other support workers.

References:

Integrated Access: The Right to Universally Designed Information and Communication Technology Evolution of Access—Building in Access to Information and Communication Technology, Abilities Magazine.

Source: “Personally Speaking: Poverty and Disability in Canada,” Council of Canadians With Disabilities.

Video on The National Action Plan from the CDC:

How Can Our Autistic Children Participate?

Filed Under (Acceptance, Autism and Learning, Books, Inclusion, school, Travel, Uncategorized) by Estee on 20-08-2012

“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.

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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!

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?

Needless to Say?

Filed Under (Acceptance, Autism and Learning, Communication, Development) by Estee on 27-06-2012

There’s not much more to add to this. As Adam talks a bit more every year, he has become an independent typist and needs lots of help in order to tap into his potential here. It began with prompting and facilitating at a time when no one truly understood what that meant, and others, as a result of controversial court cases, didn’t want to “touch” it with a ten foot pole. I like to ask myself some days where would he be if I had not pushed this forward, even with the doubters. I started because I knew Adam was already reading so it just made sense. Thankfully, we have continued with it against all odds, and we learn more about Supported Communication all the time.

Anne, however, learned to type in a day before iPads and acceptance. You can read more of her story here.

Happy OM

Filed Under (Ableism, Acceptance, Adam, Autism and Learning, Development, Joy, school) by Estee on 21-06-2012

Should I be looking over my shoulder? As autism mom and son are confronted with many obstacles, feeling settled seems like something that will be stolen from us at any moment. Nevertheless, I’m going to write about how happy I feel today because I recollect the difficult June we had last year when Adam’s former school shut down his class. They tried to place him elsewhere after we were given notice, but it didn’t work out. We scrambled to find Adam a new school, and that school is an ABA school. I fretted, of course. While we’ve always done some ABA alongside play-based and other programs that were very effective in Adam’s early years, we had good and not-so-good experiences. I learned that no matter what form of “therapy,” you decide to use for your child, it can all go south if people believe autism can be cured, or that autism is something that is an unfortunate act of nature (or whatever). Adam is a person-first and there is a fine line between nurturing the person — their strengths and challenges — versus viewing autism as just a “problem” that should be fixed at any cost.

I realized during a camp meeting today that it is a year later since the difficulties of the last one. After working with the head of Adam’s school, I feel we’ve got a pretty good thing going. We’ve worked together and with Adam’s excellent team which has been quilted together over the past decade. I am able to provide a lot of input, and Adam’s team go into the school to contribute to his typed communication, and other needs. Along with the structure that his type of school can provide, this is what makes it work for us because we can bring in the academic programs that Adam also needs and they are customized. We cobble our program together.

Adam seems more relaxed, cooperative, happier, and it feels like he’s getting ready to spread his wings a bit farther. Every day, Adam takes his own iPad pictures and sends me an indepedently written recount of his day. I get this by email. I sometimes send pictures to the school of things they don’t know anything about, and Adam recounts his weekend activities, for instance, on his own. They are still short sentences, and some days they are more detailed than others, but they are his. He has moved beyond sight-reading to phonetic reading and spelling, and this is pretty huge. He approaches his peers and wants to play with them in the way he never has before. He doesn’t know how yet to ask “play with me,” but it’s the first time he consistently wants to be with other kids, and not just the adults. We have our mini-conversations on our way home from school in the car, and on some days, he sustains his eye contact and talks to me with such engagement and intention that he commands mine. He still struggles with spoken language, but he speaks a lot more now and it always improves, although he is inconsistent. I know this sounds confusing, but Adam is complex. He says some pretty neat and funny stuff too, attesting to his sense of humour. It’s amazing what the man of few words is able to communicate and make us understand.

Today at the camp meeting — an inclusive camp — it was pure pleasure seeing everyone so excited to see Adam again. This is a camp that really cares about accommodating him and communicates well with us. I thanked my lucky stars to have such a wonderful group of people helping us out every single day as I sat around the table. For all the mountains I feel we climb, I just want to savour this. I want to thank all the fabulous people who make this happen for Adam which seems like a stark contrast to what the public system will offer us. In such good moments, I feel I must remind myself of how important it is to change the way we approach public education for autistic children. It is so disappointing how the system wants to cut back Educational Assistants here in Toronto, and Special Ed, and inclusion seems a priviledge for the verbal and “well-behaved.” The system is sick, not autistic children. I keep wondering why the cut-backs here, and have to assume (lest I use a less polite word) it’s because of the “cost,” and the doubt that autistic people can contribute or be of any value to society– a ratio that tips the economic scales against us. It seems to boil down to that.

To close, I end with a more optimistic tone — how the camp head revealed that many counsellors asked to work with Adam this year. Apparently, so many people at camp always want to come over and say hello to Adam that they have to ask them to hold off in order that Adam can get on with what he’s doing. He’s like a “camp celebrity” (their words, not mine). Here’s a kid who can’t speak fluently and who has many challenges; a child for whom standardized tests do not serve, and the public system underestimates.

This morning, Adam was chanting “Happy OM,” before he left for school, and I for the camp meeting. I didn’t know it was prophetic about the day so far. I hope for other positive signs.

Happy OM…happy OM….happy OMMMM.

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.

The Adam “Rating Scale”

Filed Under (Autism and Intelligence, Autism and Learning, Autism Spectrum and Diagnosis, Behaviours, Communication, Development) by Estee on 16-04-2012

I’m in the process of completing forms. Adam was diagnosed with autism at eighteen months of age. Now that he’s ten, I’ve been re-reading files and reports from clinicians and teachers over the years. We’ve never had a formal IEP because he’s not in public school. Instead, I’m creating a comprehensive history of Adam. I’m also making it current, adding samples of his work along with new reports. I’m calling it Adam’s Ability Binder. It not only will list Adam’s challenges, but will focus more on his abilities as a means to serving him well. Ideally, it will address his ability and disparity of skills — where he is advanced and where his disability makes life more challenging. When it is done, I’m going to find a way to ask Adam what he likes the most and add that to the binder. Right now, I’m combing through years of typed conversations to include and add to this list.

My intention is that it becomes Adam’s living document that goes with him, and to which he can contribute as he grows older. We have no system which understands autism comprehensively, let alone the nuance of every autistic individual. I am trying to create that for Adam and I’m trying to work within the system we have.

I’ve been going through these “Autism Rating Scales” again. They took me three hours to complete. In some of the line I couldn’t stop myself from writing “that is a silly question.” Or “this is a biased question,” when refering to whether my child does “strange things.” I don’t think the things Adam does are “strange.” I know him to be a normal autistic person, for lack of better terminology.

Here were but some of my pet peeves about the questions:

How can we tell if a child is “laughing inappropriately” if they cannot tell us why they are laughing? Laughing and giggling can also be a sign of stress. What if a child’s autism doesn’t let them respond consistently? Adam can sometimes draw with great focus and other times he can barely seem to hold a crayon. Sometimes he speaks full sentences and other times he can’t utter a word. Talking about “shared interests” comes with great patience from a skilled communication partner, and Adam may reveal it verbally or typing, but not yet all of the time.

When completing the Vineland-II, BASC-2, GARS-2, ARS, or Conners 3, it’s so easy for me to notice what’s missing from these “scales.” I sigh and mumble through them, and realize I’ve got my own summaries to add. Many of the questions are also about friends. Adam seems aware of his difference, and I’ve learned this when he has typed about it. I also know Adam to avoid situations where he is aware of his difference or think he might fail. I’ve seen Adam approach a group of children to join in, then stops and waits on the sidelines because he doesn’t know how to “get in.” Recently when another child expressed pity towards him because he is autistic, Adam stopped jumping and smiling. After standing on the periphery of children, not sure of how to join them, he gives up and goes back to playing on his own. Sometimes he doesn’t know the rules of the game and can’t play when he is invited. Is this “not interested in other children?” Of course it isn’t. His inability to communicate like others, however, and in keeping up with the rapid rhythm of activity and conversation makes having friends challenging. Still, Adam has made leaps this year — wanting to join in with other children, and his increase in spoken language.

Thankfully the person evaluating Adam has recognized the limitations of these scales and the complexity of him. It is important to have your assessors understand this and urge them to observe in every setting possible. It’s important to know what lens we are assessing the autistic child through. Some of them can distort the image.

Now my back hurts from sitting at my desk too long. I’ll be back at it tomorrow, hoping to tip the scales in a fair direction.

Catacombs

Filed Under (Anxiety, Autism and Intelligence, Autism and Learning, Behaviours, Movement Disturbance, Obsessions, Safety, Transitions, Wandering) by Estee on 07-04-2012

Yesterday Adam and I had a jog, a long walk and a trip to his favorite playground apparatus, a spiderweb made out of rope which he can climb through.

He’s particularly enamoured with this piece of equipment as he can climb and nudge his way through the holes in the rope that make it a “web.” As I watch him, he’s polite to the other kids, waiting for them to move aside, or trying not to get in their way. There’s an eager route happening that I can see he needs to complete. I watch his face and imagine the cogs churning and the patterns he might be making as he moves so quickly and gracefully, if not earnestly. I imagine math going on in his head as he figures out his route. He doesn’t need to hesitate, like the other children, to think of where his foot should go lest he fall a few feet down to the ground. Funny because Adam will sometimes hesitate just walking down a hall. He has mastered this web.

After that, we went on our long walk. As we passed an impressive Catholic school in the area, Adam spotted a path. I began to feel his body tensing as he pulled me towards it. I let go of his hand so he didn’t have to feel that I might say no. With the couple of times he bolted and his need to explore every door — “door is a question” he once typed — he seems to be afraid that someone will tell him that we can’t go through every door, so he pulls at our hands. This led to some tantrums and bolting last summer when we said he couldn’t go through many of those doors. He just couldn’t stop himself.

I felt the tension again and I wanted to see what would happen if I let go. His brow furrowed; he was serious, but he walked with me and I knew full well he didn’t want to be without me. He didn’t want to become lost. I took deep breaths and spoke softly, because he “absorbs” my feelings, but still, I was at the ready in case he got that eager look in his eye and wanted to run.

As we walked side by side he began to say “catacombs…. catacombs.” Adam is not being taught those words. Let’s just say, he’s got a lot more ability than most people can see, and leave that for now. The point is, like much “autistic language” I’ve seen and heard, he appropriated a word he learned on his own, somewhere, to the paths he was exploring.

I was sort of glad that the forested path came full circle. I didn’t want to stop him and I considered where-ever we ended up, we could take a cab home. Or at some point, I would be able to tell Adam that we had to turn around, and see how that went. This is going much much better now. Adam is less stressed when I explain it’s time to turn around when my voice is soft and I give him warning.

Exploring Adam’s “catacombs” with him can be fun, although I’ll admit that I often have my own agenda and I urge him to follow me. I know very well that I must explore his, with him. We may not be able to explore every door, and I know that his environments are very important to him. Yesterday, he gave me yet another insight into the confusing world, which he is so eager to see… and master.

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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.