The Creative Potential of Tourettes and Tics

Filed Under (Acceptance, Accessibility, Autism and Intelligence, Behaviours, Inspiration, Intelligence, Language, Movement Disturbance, Obsessions, seizures, Tics) by Estee on 11-11-2014

Adam’s body tics and his vocal tics now include an exceptionally loud OW! The vocal component began about a year and a half ago with grunting – I wrote a piece to be published about my perception and response to it for a peer-reviewed journal. As it was accepted with an editing requirement, Adam’s grunting turned to full-on screams and my attention turned to that as my role became to help him emotionally, but also amp up his accommodations and preserve his spot in school. This accompanied an angst at school which was swiftly resolved thanks to a number of people committed to him. As Adam’s communication by typing has concurrently advanced, it is an important conflation – between an expressive burst and the body’s struggle to produce it not only verbally, but also to coordinate every aspect of the body to produce it by typing. Part of Adam’s tics are evidently language and emotion related – charged and urgent expressions and also impulsive and involuntary. Both can occur. This is how I understand it so far and how Adam has expressed his experience to me.

You can imagine that struggling to verbally communicate, involuntary body movement, motor issues are challenging for him – a fellow who is bright, eager and intelligent. It is equally frustrating for him to be called on it or deemed behaviorally inappropriate or asked to be quiet; he was more often assumed to be not listening, learning or paying attention as he soaked up knowledge. Instead, he was discussed in terms of what others could see and understand – and a calling of attention to his tics seem to escalate them.

I welcome the following Ted Talk by Jess Thorn on the creative potential of Tourettes and tics, often experienced by people with other disability labels such as autism. If given agency over creative expression with them, how might persons often stigmatized contribute to our understanding of humanity? What kinds of knowledge that many of us who do not share these experiences might be shared?

Beyond Mall Therapy

Filed Under (ABA, Accessibility, Aides and Assistants, Anxiety, Autism Theories, Autistic Self Advocacy, Behaviours, Communication, Community, Inclusion, Intelligence, Language, Living, Obsessions, Parenting, Safety, seizures, Sensory Differences, Transitions, Travel, Wandering) by Estee on 21-03-2014

I think many parents will agree that one of the most challenging things for families with autistic children are outings.  Adam’s anxiety and repetitive activities increase over his perceived threats and fear of change; he will need to check out the bathroom in every restaurant; know where every door leads. This of course makes outings difficult, and it has a lot to do with impulse. At this point in our lives, Adam has been exceptionally tense – and I want to add that this coincides with his development, awareness and abilities too. This is a really important point to make up front in order not to treat behaviors by redirecting them in meaningless ways (such as touching your nose to replace a hair-raising scream…this will just piss Adam off). One of the dangers with partially-verbal of non-verbal people, as we know, is that when behaviors start, there is a propensity to exclude or treat the autistic person as if they are not aware of what they need, or what they are doing.

This is where adaptive communication has become very helpful for us since November. Adam has been typing for many years, but most ABA schools will not support supported typing – this is so problematic for folks with movement issues which Adam expresses – Tourettes tics, seizure-like episodes (and seizures are much more complex than one initially thinks), and “stuckness” which is catatonia. These are some of the reasons for speech impairments in many folks – similar to aphasia. It’s not that they don’t think or understand or even “hear”what we say but rather the word-finding and expressive capabilities through speech are not available. However with typing, Adam becomes more fluent in his speech. With support, he becomes, eventually, a more independent typist. In the meantime, he writes, “my body is like an engine that doesn’t run continually,”and despite that he can type some things independently he has asked for our support. To not give it to him is seen by many as immoral…something to think about in terms of our own learning in how to support people to communicate in order to hopefully become more fluent and independent. (While I have issues with this latter notion as a neo-liberal concept, I acknowledge we are swimming against a tide here and in order to survive, Adam has to work hard to prove himself…something else to think about in terms of how we treat the disabled).

So, to go out when a person has frequent anxious or bolting episodes (the fight/flight response as we know it), now requires perseverance, patience and planning, and a respect for Adam’s ability to participate in his daily planning. It also requires our time in letting him assemble himself if he begins to meltdown. For example, while on our March Break at the beach, Adam needed to go the bathroom. If there is a loud hand-drying in the bathroom, he will become anxious and turn right around. This anxiety lingered after the visit, and he began to flop his body on the beach. I told him to keep walking and tried to distract him, but at this point, it wasn’t working. I asked Adam to sit down until he was ready again to walk. As we did, we began to feed the birds. This made Adam happy and then able, after 20 minutes, to walk again.

Similarly, a week before on the same beach boardwalk, something triggered Adam and he wanted to urgently turn around. I could not understand what Adam wanted or needed so I asked him to sit down and type with me. This was difficult and he wanted to get up and bolt. I said he could not get up until we knew what he wanted. As he began to type, he was able to say what he wanted faster -“hot air balloon.” At that point, I realized that there was a water tower that looked like a hot-air balloon far down the beach, however, I miscalculated just how far. As we began to walk, it was occurring to me that we wouldn’t get there on foot. But Adam was so happy and relieved to be understood, and skipped merrily alongside his grandfather and I. I began to say to Adam that  I didn’t think we would get there on foot, so at this point I was able to negotiate with him that we would go to dinner first and then drive by the “hot-air balloon.” Adam was able to have a nice dinner and also get to see his hot-air balloon on the drive home.

Today, my team are helping Adam on his outings with lots of preparation and photos and are working with me to practice outings with Adam in many places so Adam himself can feel more competent and less anxious. Every day while we were away, I insisted on taking Adam out, with someone with me for safety, because I fear that isolation is deadly.  This is where mall therapy begins but also has to end – so often, we only see autistic kids in places where therapists feels safe, and this sadly restricts the lives of many autistic folks. Some parents might be afraid to be stared at in public. This is when it’s better to have a card to hand out to people indicating that your child is autistic and you are working on outings. Or, if someone is exceptionally helpful, as I’ve experienced lately, send a thank you note if you can to support inclusion. While we may begin with mall therapy, we must move on quickly. As I was preparing Adam to see the animals today in the park, he typed, “seeing animals is getting very tiring,”and he asked to walk and take the subway instead.  This part of negotiation is also key to success for outings as people like Adam have a hard time advocating for themselves (although they do communicate with their behavior, which is largely viewed as maladaptive, sadly). I also have asked Adam how to support him in moments of need or meltdown where he wrote, “please be calm…” and indicated that these moments are also very embarrassing for him.  In addition to a bag of tools he has to help himself and cognitive behavioral therapy (which, by the way, is typically used on people who are verbal and are deemed “high functioning”‘… Adam’s ability to learn the concepts and techniques quickly rules out theories on HFA and verbal ability and the ruling out of such therapy for non-verbal people…I hope a researcher who presents at IMFAR will pick up on this as most of the people used in research study tend to be from the HFA/verbal group due to cost and time constraints…something to think about in terms of who we service, who we value, and how we treat autistic people).

So the question is whether the mall is used to simply used to truly help autistic people be included in the world, a step towards many outings and environments, or if it excludes people from being in the world. Yes, it’s a challenge for folks, and in the end, a person decides for themselves where they want to be. But if Adam doesn’t learn now as well as being able to advocate his choices while learning to negotiate with others, our lives will remain behind closed doors. While I know this is hard for Adam, I also know that he doesn’t want this.

 

 

 

Moving along…

Filed Under (Adam, Advocacy, Anxiety, Communication, Community, Inclusion, Intelligence, Living, Movement Disturbance, Obsessions, Sensory Differences, Transitions, Wandering) by Estee on 17-03-2014

There are times when you have to just stop everything. Adam has required it…his school has required it. A focus on Adam’s typing and adaptations in school have alas been paying him dividends. Despite his want for escape, screaming and bolting, Adam has been in cognitive behavioural therapy and we’ve been working on his accommodations in school so much so, he is literally whipping through his academics – I know this is the tip of the proverbial iceberg. Sensory breaks every 20 minutes enable Adam to focus and he has an array of self-help tools he can now choose for himself to calm – from stretchy therabands (his fave), to signals that he can verbalize “the body needs to move.” His penchant for routine and doors is akin to panic attacks. It is important to give Adam concrete options to move from one thing to the next. His will is strong as is his intelligence and everyone who knows Adam must try to help him by staying two steps ahead of him at all times in order to respond. Or, as I do now, I also ask him what he needs:

Me: Adam, what I can do to help you around when you have the impulse to go through doors?
Adam: You can help by staying calm.
Me: What do you need?
Adam: Hard to move forward. Really hard to tell.

So we will work on it and Adam is beginning to communicate his more complex needs. Here in Florida (for Adam’s March Break), the building security guard came by and noted when he saw Adam in a moment going through doors with his “help,” he could recognize it as a panic attack right away because as a young person he too had panic attacks. This is what is like for Adam when it’s happening. For now, I ask him to sit down and try hard to get him to focus by typing. When he is able to think and redirect his thoughts to communicate, we can better negotiate our next steps. It takes time, so when we have an agenda, it just won’t work. We need to be prepared to spend an extra 20 or 30 minutes helping Adam to the next step because he could be literally “stuck” in his loop/OCD and tics, or needs that long to get his words out. But when he does, it’s so glorious to see him gleam with pride. It’s so wonderful to be able to negotiate now with my son! Our days are more rigid than they used to be; Adam needs his routine. And I am finding the balance, and keep asking him for knowledge on how to help him. It’s a team effort.

And as for that building security guard? Well, not everything has stopped…I began the thank you-note project – a new form of advocacy for Adam and autism. Every time someone helps in a positive way – by standing back and letting us be, to a nice gesture or comment, and letting us be a part of the community despite challenges, they receive a thank you note from Adam and I. People need to know they are doing the right thing by letting us be a part of our communities and advocating for what we need. It may not be a big glitzy campaign, but it’s something that we feel good about… reaching one person at a time.

Parent/Teacher

Filed Under (Adam, Anxiety, Behaviours, Communication, Estee, Language, Obsessions, Parenting, school, Single Parenthood) by Estee on 07-01-2014

We begin 2014 anew. I have applied for a leave of absence from my PhD study to focus entirely on Adam’s program. In so doing, I recognize I need time to energize myself and have some free time; this is not possible as a single parent of an autistic child if I don’t cut back. So, at the end of 2013, I made the empowering decision to become a communications specialist and educator of my son. I’m making field notes along the way. I don’t do this alone of course; it takes others to assist us. But in Canada where there is a lack of trained specialists in supported communication, this is up to me now. Thankfully I have other supporters and success stories including our own.

With the ice storm, a sudden move to a hotel due to the massive power outages in Toronto, the holidays and general upset at the end of this year, I may have fallen into one of my darkest places. I hate to see my son so upset, so less able to handle transitions. I realize I hate holidays too – there was too much expectation despite the fact that I know that this a sure way to fail. No way, no how next year. One modest dinner and one present…that’s enough and that’s lovely.

Of course, much of this has to do with my own resilience and preparedness. Sometimes, Adam requires more preparation than usual – more social stories, lists, repetition of what we are going to do next. He can be the kind of kid that seems to be rolling along quite well and then he needs exceptional support. Let’s just say this past December he needed way more than I provided. School had exhausted me as well which didn’t help. Writing about the philosophy of language and disability takes a lot of of one when a child’s scream replaces words; they are more commanding. As soon as I turned my attention to helping Adam, he calmed down. His school assisted with what we call “operation calm down” and his environment, demands and work were all reassessed. For Adam, he requires proactive breaks every twenty minutes to return to his desk. His school has been most accommodating in helping to provide these breaks. Eventually, kids who are accommodated are often able to increase their level and time of focus as they mature. If there’s one thing I never stop learning is that changing expectations means that you always have to reassess them.

Adam then had a long break (albeit the first half was stressful with the storm). When he returned Sunday, we had another cold weather, namely the “polar vortex.” Schools were cancelled so I planned the day: a walk before it got too cold to go outside, art, reading and typing (I made a program for that), sensory swing, and computer. In between such a good day, Adam decided he wanted some pretend play so we went with that (lots of language there). There was only one incident when his grandfather popped by and then Adam thought he was going to “gramma’s house.” Adam will tend to want to do things that are routinized and when he found out he wasn’t going, he screamed. I left the room and asked him to read a book to calm down. He did so in less than five minutes, which I thought was pretty good. When he was quiet, I returned to ask if he was feeling better, ready for another scream. None came, but it might have. I told Adam I’d check on him again in a few minutes.

When I did, Adam went through his lists when he knew “gramma’s house” wasn’t an option: “Brunos”(which is a grocery store), “Hero Burger…Burger King…Shoppers Drug Mart…”

“Adam, mom needs a break. I’m going to have a cup of tea,” I said. I decided that bargaining wasn’t going to get me anywhere and I’m trying hard to build Adam’s “no” muscle. I sat quietly on the couch drinking my tea, expecting the whole while that another scream was possible. None came. Soon, Adam made his way up the stairs from where he was in the rec room, and lay flat in the hallway. I said nothing and kept drinking my tea. Eventually, Adam brought a book to the couch and sat with me. We got to the point where I could ask him what he wanted for dinner. If he would scream, I would have sent him quietly to his room not as a punishment, but so he learns about self-calm and what I expect from him. There, he has more books to read, which I feel is a positive way to self-regulate intense emotions and which seems to work for Adam.

“Teachable moments” like these make me feel like a competent parent and teacher, and I think we all need to feel that way. I had prepared, I have been studying to make Adam’s programs comprehensive, and I’m becoming more prepared and working on the more difficult behaviours such as bolting, opening doors, and the so-called willfulness of puberty while recognizing that Adam might be confused and sometimes fearful – helplessly resorting to routinous behaviour in order to self-regulate or find order. It is my job to help him. This is what makes my days feel gratifying rather than worried about him while I sink my head in Barthes and Derrida. While I’m not going to stop reading and writing, I just am going to use what I’ve learned in theory and turn it into a practice.

Yesterday and this morning, Adam was beaming. He was happy to go back to school this morning. Starting next week, I get to teach Adam more communication, typing and literacy, life and social skills. I have begun my leave to do this work. I hope we both have a wonderful 2014.

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 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?

Mapping Things Out

Filed Under (Acceptance, Adam, Anxiety, Behaviours, Contributions to Society, Movement Disturbance, Obsessions, Safety, Sensory Differences, Transitions, Wandering) by Estee on 19-06-2013

london-globe_1839825i Image by: Stephen Wiltshire.

I must admit time heals anxiety. After the darkness comes the light, or is it the other way around? Well, the globe rotates. As Adam seeks knowledge by going through doors, I have always needed to calm my own anxiety through books. As I think more again about Adam’s need for doors, his curiosity for bushes, dark places, paths, and in particular, the doors within buildings, I’ve been thinking about maps and a book I bought for this purpose in considering Adam’s interests – Denis Wood’s, The Power of Maps. As many autistic individuals proclaim a need to map, to visualize, and with an exceptional ability at visual memory (routes, maps), I feel that this is the next frontier for us: to learn how to make maps of our environments, to build a 3-D version of our house, and go from there.

“We are always mapping the invisible or the unattainable or the erasable, the future or the past, the whatever-is-not-here-present-to-our-senses-now and, though the gift that the map gives us, transmuting it into everything it is not, into the real. This month’s Life leaps at me from the checkout counter: ‘Behold the Earth,’ it says. ‘Startling new pictures show our planet as we’ve never seen it before.’ Inside, below the heading ‘This Precious Planet,’ the copy promises ‘Striking new views from near space show us more than we could have guessed about our fragile home…I am overwhelmed by the solidity and apparent indestructibility of everything I see around me. Only the pictures – let us think about them as maps for the moment – convince me of the reality the captions evoke…’New picture'; ‘never seen it before'; ‘new views'; ‘show us more'; each phrase insists on the fact that indeed I never have seen the planet in quite this way” (p. 5).

It reminds me of Dawn Prince when she wrote in Songs of a Gorilla Nation of how she ran to greet every room of the house over and over again. Many other autistic people have superb visual memory (Stephen Wiltshire, Temple Grandin…). Adam once drew pictures that were so “correct” in their perspective despite the fact that he otherwise has weak motor control. This leads to the conditions in which a person with various sensory disabilities can and cannot perform the same task or function. Soma Mukhopadhyay speaks of this in her books on Rapid Method Prompting and I find them true to Adam – the way a keyboard is positioned, his orientation, the differences he experiences with his vision other body movements.Things have to be set up the right way for him, and I need to always pay greater attention because it is easy to fall back on my laurels and adopt my take-it-for-granted view of the world.

Sometimes it seems that I’ve always known that mapping could be Adam’s hobby which might lead to map-making or building. He needs to know what’s behind everything for what we call “obsession” or “stuckness,” automatisms and the like. Lennard Davis discusses how we come to value obsessions, particularly the actions of artists as “obsessive acts,” like Vincent Van Gogh. Instead of invoking a moral value (a trait or characteristic as inherently good or bad, positive or negative), we can come to accept these proclivities as inherent (even if it scared the living day lights out of me). Adam needs to explore and to know as I do by finding information in books. How might I make this something that works for Adam? This is my next frontier.

“The sphericity of the globe is not something that comes to us as seeing-hearing-sniffing-tasting-feeling animals, is not something that comes to us… naturally. It is a residue of cultural activities, of watching ships come to us up out of the sea for eons, of thinking about what that might mean, of observing shadows at different locations, of sailing great distances, of contemplating all this and more at one time. It is hard won knowledge. It is map knowledge. As such it is something that little kids have to learn, not something they can figure out for themselves. ‘Educators are living in a dream world if they assume young children understand that the earth is round'” (p.6).

So why do we prohibit Adam from being free to explore, to know what and how he needs to know? How can we keep him safe while doing so? How can we fuel his interests in ways that are productive for him, and perhaps for many others?

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.

After June…

Filed Under (Autism and Intelligence, Behaviours, Joy, Obsessions, Parenting) by Estee on 22-07-2011

“Ma…. M. Ma… M. ” That’s what Adam said to me last night before bed, before he woke with a fever this morning, no doubt having caught the summer cold. It also happens to be Toronto’s record-breaking heat wave. As I wandered in his room with my early morning “gotta wake up” voice, Adam seemed woozy. I sat on the side of his bed and felt his forehead and body. He felt like an oven. There is not a day when he’s ill that I don’t want to take away all his aches and pains.

Last June was a difficult month of transitions — heck the last three years have been full of them. I find it difficult to write when we are going through something because I have to process a lot of my own emotions and ways of looking at life. My convictions are tested. I’ve learned that I’m glad I have some.

Losing an aide worker of seven years, another change in school, a new camp…Adam demonstrated his distress with an obsession with looking behind every door which lead to bolting. When Adam is anxious, his body twitches and he started to lightly nibble at his arm, and sometimes mine. If I had to describe it in my own words and perspective, it was like Adam had to explore everything as if it was a flight response. I would say that this was all about fear and uncertainty. He will able to tell be better when he is able. He is getting more able as he types more to me.

At first, I did what any other parent would do and asked him to stop. Drawing attention to it made it worse. When Adam goes through a state of anxiety, it is hard for me not to as well…like his illness, I wish I could take it away — all his pain. I wish it would stop. As a single parent, I take on the brunt of it too. My parents are a wonderful support system for me as are the people closest to me, but I take so much on emotionally where Adam is concerned. It is sometimes so overwhelming, and I find myself strewn across my bed when he is asleep wondering how I can go on. I find myself in that futile trap of worrying about the future.

Then something clicks. I think of Adam as a person, as I think of myself as a child — all of my fears and needs. I needed my parents, my mother especially, when I was scared or sick. My dad embraced me the times I least expected, like the break up from my very first boyfriend. My mother took good care of me while my dad taught me some lessons about brushing myself off again after life would offer its hits over and over again. I’ve learned that happiness is not a given. It is a gift. Life is about the struggle so it might as also be about how we handle it. I need to show Adam that I am as strong as he will be. He needs me to be.

There are times when I think it so unfair to bring children into a harsh world. I wonder, as Adam will have to struggle through life the way we all do, why I did this to him. Yet nature was stronger than this logic. I wanted Adam as much as I needed air. I cannot imagine life without Adam and without having this level of love and responsibility in my life. Sure, I’m not unlike everyone else that I also imagine freedom. Yet, now that Adam is here, it’s not as important. This is what I made, and what came my way, and I want to make the very best of it.

When I woke up that morning and everything clicked together again, I remembered that we’ve gotten through a lot of phases. I remembered Adam’s smile, even though he wasn’t smiling that much in June. I remembered how much he loves and needs me and how I am fit for the calling. I may have to lie exhausted, strewn across my bed some days, but I know as long as I’m alive, I’ll get right back up again.

Since his new camp began in early July, the twitching abated as did the nibbles on his arm. I learned not to call attention to it, and to provide him with more soothing activities, while teaching him how to soothe himself. Adam uses a steamroller — purchased through Southpaw Enterprises — as a “squeeze machine” which provides him with the deep pressure he seeks. As several weeks have passed, he is more verbal again and the smile is back, even in his latest group camp photo. I try to rub his back and tell him that I understand when he’s frustrated, and he appreciates it.

Adam’s ways of communicating are so diverse. He has motor planning issues, apraxia and catatonia-like initiation issues. These are not motivational in the least. These are real impairments which need understanding and creativity in order to help Adam become enabled.

When people also think that Adam doesn’t understand, I want to show what he can do on his iPad or computer. He is able to demonstrate his ability to answer, usually one hundred per cent on comprehension exercises, with a multiple choice format. I asked his school to do that last year and he was able to answer questions better this way because it is a visual prompt — he has to choose from one out of three of four possibilities. Another way to see this is through his iPad. There are programs (you can start with “Playwords”) that ask children to pick the right word to match the picture or the verbal prompt — some of the words are getting sophisticated. Adam can zip through that exercise like it is nothing. Yet, give him another format, like fill in the missing letter of a word he knows very well, he has some difficulty. He needs me to model several times, the correct way to complete the exercise. Then he’s flying again.

After a couple of weeks of camp, a video of the end of the day “Flagpole” was sent to me by email. I always wonder why Adam points to his favorite activity being “Flagpole,” everyday. It is an end of day camp activity where the entire camp gathers together. In this video, counselors were demonstrating a dance and all the kids had to follow. It was boring at first to watch the counselors on a roof dancing to warbling electronic music. Then, the camera panned out. Suddenly, a small figure to the bottom right looked familiar from the back. I recognized the beige floppy hat and the lean body. It was my Adam following the dance moves and I could tell he was intently watching. It looked like he was having….fun. I was so happy, I forwarded it to all my friends and family. It was indeed the gift I have learned never to take for granted.

Today Adam sleeps in my bed and he needs me around to take care of him. I’m stuck in the house, but I know he needs me, and he loves me. He has just woken as I get up from the other side of the bed. “Stay here,” he says. Don’t worry, Adam. I’m not going anywhere.

For The Love of Letters, Lists and Other Things

Filed Under (Art, autism, Autism and Intelligence, Autism and Learning, Development, Obsessions) by Estee on 10-03-2011

I love letters. I’ve loved typeface since I was a child, remembering picking up my mother’s collection of old brown volumes of Encyclopedia Brittanica. I admired the letters, words and sentences before I could read them. Around the age of four, I tried to write letters of the alphabet by sounding them out. I was proud as I showed my mother warbled symbols drawn with red crayon. I don’t know if I wrote all the letters correctly, but I yearned to read… and write. 

These days I’m still attracted to typeface and letters, am a big fan of Cy Twombly and the artist, Agata Ostrowska (a printmaker whose work I’ve posted at the beginning here), and others who incorporate text into their work. It’s an “obsessive interest,” I guess you could say. I love the way one word can have one meaning when it stands alone, but when placed beside another, can connote something different.

Long after my “obsession” was contently embedded, I gave birth to an autistic child who also loves letters and read them by 11 months of age. I revelled in his ability while many others told me to be on alert — that Adam, with “hyperlexia,” meant that he would be able to decode words and letters, but his reading skills would still suffer later on — when he had to read phonetically and comprehend.

Yet, the other day, while sitting on his bedroom floor in the twilight,  I pulled out some pictures and words that I thought were completely unfamiliar. It seemed no-brainer to him. He just knew what all these pictures were. He picked up the information somewhere and organized it. I think kids like Adam are like sponges, picking everything up and making sense of it in their own way, despite the fact that we don’t always think so.

Language and comprehension is like art. We don’t necessarily acquire it the way Penelope Leach and Dr. Spock insist young children do, and we cannot be certain of how it is experienced and acquired, except that it does seem to be experienced on many sensory levels. We can make assumptions by how a person communicates, through different forms of expression. Like art, language acquisition, although widely studied, is largely ineffable; so vast that we will never know enough.

Lists, and obsessive interests like purported autistic collectors and artists like Joseph Cornell and Gregory Blackstock added fuel to my existing interest in not just letters, but the lists they can become. These are the way we organize information and make sense of them — the child who lines up the trains, the objects, perhaps,the artist who draws cities in perfect detail from memory, or the child who builds their knowledge like intricate networks of scaffolded knowledge. These are the ways we make sense and order of things.

Umberto Eco, art historian and novelist, by virtue of his profession, is interested in form, structure and order. As a curator of art, I too understand the art of catalogue. I enjoyed working in a library for part of my university career for this very reason. I loved the smell and feel of card catalogues in and of themselves. I understand the way curators and librarians collect things and how important it is — these libraries of human thought. In his book, The Infinity of Lists, Eco made me think about how I think Adam acquires language — like the curator — filing and cataloguing and even enjoying every sensory aspect like the musty smell of the card catalogue. How we take for granted the sheer art form of it.

 

To finish this post, I’ll leave the idea hanging for now. Just enjoy this. It’s something Adam found, actually:

But since we have digressed abundantly,
Turn back thine eyes forthwith to the right path,
So that the way be shortened with time.

This nature doth so multiply itself
In numbers, that there never yet was speech
Nor mortal fancy that can go so far.

And if thou notest that which is revealed
By Daniel, thou wilt see that in his thousands
Number determinate is kept concealed.

This primal light, that all irradiates it,
By modes as many is received therein,
As are the splendours wherewith it is mated.

Hence, inasmuch as on the act of the conceptive
The affection followeth, of love the sweetness
Therein diversely fervid is or tepid.

The height behold now and the amplitude
Or the eternal power, since it hath made
Itself so many mirrors, where ’tis broken

One in itself remaining as before.

— Excerpt from Dante’s The Divine Comedy, from Paradise, Canto XXIX, VV, 126-45.

Lorraine Kerwood: “I didn’t perceive myself intelligent in any way”

Filed Under (Autism and Intelligence, Contributions to Society, Obsessions) by Estee on 24-11-2009

Lorraine came to me by way of my own website, which attests to the power of the Internet in making connections these days. Reviewing her own work with recycling computers, and how she came to regard herself by way of other people’s view of her, I of course cannot help but think about autistic people and what a “contribution to society” can look like:

For people who view obsessions as negative, this video is another story of how our “obsessions” are pathways to creativity and invention. Visit the Next Step Recycling website.

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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.