This is Our Halloween

Filed Under (Acceptance, Accessibility, Adam, Autistic Self Advocacy, Communication, Development, Family, Holidays, Joy, The Joy Of Autism) by Estee on 31-10-2014

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We got up a little earlier today to rush to get Adam’s makeup on for Halloween here in Toronto. Adam decided to be a happy bear, so we came up with Happy Panda – it’s also a story about mindfulness that we sometimes read. It just feels right to show a happy little autistic guy, a preteen no less, who types to talk and gets excited like every other kid about Halloween. Adam is part of the whole process in deciding what he wants to be. Since Adam started typing at the age of 4, and is now 12, he has become more able to self-advocate and tell us a lot of what it is like to be Adam.

Here he is (below) inspecting my make up job… I must admit I wasn’t sure if he liked it when it was all done… and I didn’t have time to discuss it with him as we were rushing out the door. But he seems to be thinking about it here:

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Alas, in this next shot, Adam is a Happy Panda posing for the camera. Today at his (inclusive) school he will go trick and treating around to each classroom. It’s raining in Toronto, so it is unlikely he will go out tonight with his dad… I’ll miss Halloween with Adam this year. It’s the first year ever I’ll miss it with him.

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I hope all autistic families will enjoy their Halloweens if they want to. I never believe in forcing our kids to do things that are expected, but at the same time, I also believe in inclusion and participation in ways that the kids can and want to participate. I always tried not to expect too much when Adam was little. We stayed in one Halloween when he preferred to hand out candies rather than going door-to-door. That remains a really fond memory because Adam chose to do this and he enjoyed it so much. Before he could self-advocate with words, I gave Adam an array of choices, making costumes that reflected his interests. Since Adam was deemed hyperlexic and loved numbers and letters, I stitched letters and numbers to his clothes and named him “Alphabet Boy” – indeed my kind of superhero. This year, it helps a lot in all activities to make up our own social stories so that Adam knows what is expected, and I have him participate in writing them by making choices before decisions are made. This can involve all the steps that are made from ringing a door bell to what to say, to how many doors Adam can knock on so he feels a little more secure about how the evening is constructed. It’s also part of why I like the process of making Halloween costumes (although I’m not that talented at it, I still enjoy it) because it gets him involved and a chance to anticipate and be a part of any given event.

Two years ago, he wanted to be a ghost, and we managed to make together a Tim Burtonesque version… he loved that one; in fact I think he’s channeling Tim Burton again this year! Here’s a photo of that costume:

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And another year, he fell in love with a cowboy costume from the store – he wore that one two years in a row:

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It’s been a joy to watch Adam grow and develop over the years. Having an autistic child is wonderful to me, the challenges included as they have encouraged me to think outside of the box. Let’s all make our Halloweens what we want or need them to be, and find our contentment with that!

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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.

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

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

I am blissfully tired after our second day at the Communication Institute in Syracuse. This is Adam’s first autism conference and all that stuff that was happening beforehand has abated. He is happy here and spending time in a workshop in the mornings learning more skills, and sitting in talks for the rest of the day, and taking small excursions for his breaks. He has watched other typists here intensively and this always inspires him to do it. I’ve learned that he needs less support than I had been giving him, given the right tools, keyguards, anti-glare screens… I’m learning about iPad apps that will change his life and change the way we “do” school…not that most schools (most using ABA/IBI for autistic kids) in Canada understand or provide as of yet. Adam can’t be normalized but he is a very bright, very autistic, very wonderful and intelligent person.

One thing that really gets my goat, however, is the notion that there is no real purpose in teaching autistic people how to type, use AAC, or engage in an academic curriculum. It blows my mind that these things are under threat for autistic people – that communication tools risk being taken away in favor of verbal behavior, which, of course, harkens back to Oralism – when the deaf culture were denied sign language and were forced to speak and act in normative ways. We can look at Victor of Aveyron (1788-1828) for this under the tutelage of early behaviorist Dr. Itard who later abandoned Victor (although Victor could read and use text). Alexander Graham Bell also favored Oralism and it existed well into the 20th century. Today autistics face a kind-of Oralism in Verbal Behavior programs. It’s not that we don’t want our kids to speak if they can, but most autistic folks can’t speak for a full day or not at all and need other reliable sources of communication. These tools for autistic people are a right as sign language is for the deaf, and considering we are asking autistic people to communicate normatively, and autistic people say that they need this means to articulate their thoughts, it’s a complete mistake to even think of taking this away from people.

Society, in the general sense, doesn’t find that many autistic folks are economically productive enough to invest in them, so instead they are called the burdens on society. I’d like to invert that notion of what a burden it is for all of us to be underestimated and only be taught for the purposes of being the cog in a corporate wheel. May I suggest that we all be creative in thinking about the various kinds of purpose and contribution that humans can make, and rethink “productivity.” Then, I’d like to suggest that parents of autistic children who want their children to be accommodated, educated and literate as autistic people to adopt the mantra of those who doubt our children, “so what?” In other words, I think we need to develop a sense of entitlement when it comes to supporting autistic rights to communication tools, access and accommodations. We have to say “so what?” to being autistic, or our children being autistic. It’s a material reality that normative culture is a majority culture to which autistic people work so hard to adapt, and I think of the terrible injustice it is that autistic people have to prove their value and competence every single day of their lives (and often get held back because of it). I think the mantra “So what?” helps me to keep going against ignorance when people ask me why bother educating Adam as opposed to remediating him (before the right to participate or inclusion) or just teaching him functional skills. We are here, literally, among the “wretches,” and there are quite a few here, folks. The critical mass is growing and we ain’t no epidemic. I don’t care what you think of Adam and his going to school or later, university. Just don’t take away his right to it. As for the wretches, they are doing a magnificent job in advocating for this right, and we have an obligation to support them.

Now I will turn my post back to Adam. He was proud of this little story he wrote today which was read aloud to the class – I can’t remember when a teacher presented Adam’s work to the class for such a long time now:

“One day two leaves fell early in the morning. They weren’t happy because they wanted to stay up on the beautiful branch. A nice boy called Adam found them and stuck them up for the rest of the day.”

A few minutes later he typed to me: “Real useful ideas.” Then, “The joy love you mom.”

Thank you my little one. I am your devoted wretch-in-arms.

Autistic Freedom

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

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

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

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

Felix: Imaginary City Map, Age 11

Here’s how the artist responded about the work:

What was the inspiration for this piece?

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

Who are some artists that you like?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now, how can we respond?

An Autistic Boy’s Life is Not A Paragraph

Filed Under (Anxiety, Books, Development, Parenting, Transitions) by Estee on 12-06-2013

Adam has progressively better days since the basement flood and croup. When he seems anxious or derailed by life events I quickly engage everyone on Adam’s team – what has worked well for him is more predictability, gentle voices, activity including sports and sensory support that befits him. All I have to do is write things down and Adam reads lists and stories for me. Countdowns work, clocks and the like. It’s important to set the time aside and concentrate on him until he feels better (and this makes me obviously feel better too). And while I’ve been bemoaning the loss of his cherub cheeks for quite some time now, puberty has officially begun. I can see it emerging as cherub cheeks turn in to pimply ones. It just really hit me this evening how much he suddenly changed. It seems as if the last two weeks have presented us with a lot and although I knew this day would come, I’m feeling a little strange about it, like, poof…the childhood is now officially gone. Of course, the transition is longer, but sometimes the way we view things seems so hyper-real. I’ve heard that boys stay close to their mothers, and while I’m really cognizant of him needing to spread his wings and be a boy, a teenager, a man, I still hope he will indulge my affections.

I picked a book up about boy’s development the other day. I scoured a few to read what boys his age go through. Of course, these are supposed to be boys with typical skills, but I still found it so relevant in terms of body development and feelings. I want to support Adam into his teenage will (and whatever else comes with it). When I looked for “autism” in the index, I was surprised, actually, to see a reference. I flipped to the page, situated in the first third of the book, and read the “warning;” that is, the “negative” things that a boy may not develop which might indicate autism. I was disappointed if not bored (while I considered new parents paralyzed with fear). I mean, when will autism be included in the long life development model that I need to read, and not as a blurb or a warning in a paragraph?

Adam’s life is not a paragraph. It doesn’t necessarily belong to the “special” boys category of books, either. It is a long, developmental line (and hopefully life) and he feels and just like other boys feel, and sure, then some. It would be great to acknowledge all boys, not matter what their label, integrated within the context of a full and whole boyhood – to include the ways that all kinds of boys may experience their bodies and feelings. Yet, autistic boys get books on different shelves (if we get any at all outside of Jessica Kingsley). Maybe we should simply ask that our boys getting written in.

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.

After The Wedding

Filed Under (Ableism, Adam, Advocacy, autism, Autism and Intelligence, Development, Research, school, Sensory Differences, Transitions) by Estee on 12-06-2012

Adam happily skipped down the aisle at his sister’s wedding. He didn’t sleep the night before, mind you, so I had to go with the flow. The question I asked myself was what was really important in this affair? First Adam, of course. If he were to have fallen apart that day, I would have aborted the mission. That didn’t happen so my goal for him was to be calm and walk down that aisle. I was going to forget the photographs but he seemed happy enough to leave for the wedding on schedule. I made sure we arrived at the tail-end of the photographs to avoid long waits. I prepared his bag of tricks — food, fidget toys –and a schedule on his iPad using the First Then app. I used the photographs from our visit to the facility earlier in the week, and wrote sentences from the time we entered to the end of his wedding duty. I recorded my voice with the pictures, and he loved that. He reviewed it many times before we left the house.

Arriving to the photography session, there was excitement and fuss — tightening his bow tie, buttoning his jacket, and he didn’t like that much. He wasn’t given any processing time. Then, Adam was lugged by the hand from this photo to that. He wasn’t happy with that either, but maybe there’ll be a couple of decent photos. Dad walked him down the aisle for practice and I asked if he could be excused from the formal rehearsal thereafter so he could have a quiet room and a break. This was successful. He ate some food, sat on the couch and seemed very happy. I think this was his chance to process where he was and that he was finally at Serena’s wedding, for he indeed said “Serena, Serena…” followed by a giggle.

Then we were asked to vacate the groomsmen’s room. We walked about the facility slowly, saying hello to people coming in. We were to wait around near the room where the wedding party would gather prior to walking down the aisle. Dad came when it was time to collect Adam and I took my seat.

Finally, what felt like a mile-long aisle, Adam walked down in the hands of his two older brothers and I fought back my tears. He started to skip a bit…Adam likes skipping more than walking. His brothers brought him to me and he sat down for the rest of the ceremony until the end, noshing on lollipops and a bag of grapes. He was picked up and driven home after the ceremony as I knew he would be exhausted from a sleepless night. Otherwise, he might have stayed at the party a little longer.

Later that evening, I looked at my phone and read “ambulance.” I quickly rose from my seat and called home. My parents, who took Adam after the ceremony, were with him at my home. They heard a sudden crash and went to check on Adam. He seemed okay so my father looked out the window. Their car was totaled in my driveway from an elderly man who lost control of his car (and tried to get away). I was so relieved to hear that no one was hurt, but I felt sick to my stomach that they had helped Adam out to make it possible for all the intricate wedding scheduling to happen, only to have their car wrecked. I know, it could have happened anywhere, but still.

~

The wedding is now over and after decompressing, Adam is back in school. I’m going through reports as I prepare for this summer and his next school year, as I will be returning to grad school in September in Critical Disability Studies, hopefully to help Adam, and to answer the many questions and issues I raise on this blog. There are so many that I would like to make a contribution to the body of work on what kinds of help autistic people need in order to contribute to society as autistic people. I thank many autistic people for helping me with that question when I first created The Autism Acceptance Project. These conversations happened years ago when I was seeking input from autistic adults in creating an autism organization. Many parents want to get involved and for good reason. Yet, I thought that the charity models weren’t supporting autistic individuals well, and wanted to discuss this. I feel it’s now time for me to go back to the drawing board and contribute to the science.

~

Adam recently had a series of standardized academic tests. The testers acknowledged in the report that these standardized tests do not accurately reflect Adam’s “true potential,” and they have ordered the Ravens for him. Still, the report puts him in well-below average ranges. I don’t think there is any typical parent, who came home with a report card without at least a B, who hasn’t inherited the same feelings of what it means to be “successful.” My little guy who stims a lot, who can’t sit still, was placed in a little room for three days and expected to work for two hours at a table — while some painful teeth were coming in. While the testers acknowledge the many limitations for testing autistic folk like Adam, changes have not yet been made in terms of how we evaluate the autistic population. The testers stated that there should be computerized tests and I would add, there should be a sensory room and tools such as seating pads, and even a trampoline if necessary.

It was suggested that Adam have lots of breaks in school, use the iPad and computers for learning, yet the tests to determine autistic ability, intelligence, as well as areas that need to be further supported, don’t yet accommodate this learning style. They noted that in some areas Adam functions at a 13-year-old level and in others (like Math) at a grade one level. When I was in the testing room with him, I also realized that the many items they were asking Adam about, have NEVER BEEN TAUGHT to him. How, I thought, could he answer so many questions accurately when no one has even taught him these very specific things? I realize that no matter how much I talk about this, my comments seem to fall on deaf ears. Yet, this is an important link and a reflection of how Adam can teach himself. In this alone, we have to acknowledge an autistic learning pattern and ability to learn overall. In particular, Adam had excellent pattern recognition, and he knew sophisticated words that I know he has never been taught in school. Since he’s been very little one can always catch him reading a book, although I think most people don’t believe he was actually reading.

When I hear on the news of an autistic person having disappeared with a description of their functioning level, it frightens and disturbs me. I cringe when I hear that the person “functions at a five-year-old level” when they are 16. True, there is real disability here. But if I know Adam well, and I do, watch him type what he wants for a YouTube video, or something on the Internet. Listen to the teachers who also see Adam “perform” with 100 per cent accuracy one moment, only to unravel to “a four-year-old level” the next. That to me is the nature of Adam’s autism. Having people understand the variances is so difficult and it’s tempting to want to give up. Making sure Adam is not placed in a class where he puts the same puzzle together seems to take enormous fortitude. We have to continue to serve, to address disability not as something to be ashamed of, but respected and accommodated, while ensuring autistic people receive the education that they rightfully deserve. This has to start at understanding not only the impairments but in the pathways and methods that are successful to learning. In addition, our charities and scientists have to work harder in promoting the value of the autistic population. Without this premise, we won’t be able to accomplish our important goals. Going from theory to practice takes a long time. We also have to also start in the testing room with the tools we have now.

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.

My Pre Teen Is Born

Filed Under (Acceptance, Adam, Development, Single Parenthood) by Estee on 27-04-2012

It’s happening. Adam is growing and with it, a new attitude. Puberty is peeking through his ten-year-old countenance.

I realized this pre-pubescence more accutely yesterday when he emerged from school. Usually full of smiles at seeing me, he looked cross. “Daddy’s house!” he exclaimed. His dad and the nanny tell me that Adam often asks for mommy when I’m not around. On occasion, Adam will check to see where I am, and he seems reassured. It was new for me to hear this declaration. When he looked disappointed to see me, I felt a mix of rejection and giddiness at the same time. After all, Adam is a boy and I hoped there would come a time when he would want to be with the boys. A boy is supposed to want to identify with the males in his life. But what of me?

“Hi honey,” I laughed, bending down to kiss his cheek. Adam’s eyes were still serious and he didn’t lean in to my lips as he usually does. “Daddy’s house!” he said again.

“You don’t want mommy?” I asked, forcing myself to appear a confident mother. Adam was silent as the teacher and I chit-chatted as usual.

“I couldn’t believe it today,” she said, her eyes wide and proud. “It was like watching an adult Adam. He did everything that was asked of him.” She put his hand on Adam’s shoulder while he was listening and looking at my car. “At one point my sentences were so long, I thought he wouldn’t understand me, but he could follow everything.” I took in a long breath and half-smiled, grateful for her positive report and enthusiasm. I grabbed the handle of Adam’s small red rollaway suitcase he takes to school and handed it to him as he began walking away.

“Thanks so much,” I said to the teacher turning and waving, and then tuned in on Adam who was walking ahead of me to the car. “Hey Adam, do you want to call Daddy?”

“Yes,” he replied firmly.

We got in the car and I called his dad on the Bluetooth. “Adam said ‘daddy’s house’ when he got out of school,” I said, “so we’re calling you.” Adam listened to his father’s cheery ‘hey buddy’ voice, and Adam talked a little — phone conversations are difficult for Adam to respond to. Afterwards, he seemed content.

We arrived home and Adam washed his own hands and headed for the kitchen for his snack, all without my reminding. He had a piano lesson, and Grandma and Grandpa came for a visit. Every time I went downstairs to see how he was doing, though, he pointed to the door. “Go away!”

“Okay, okay!” I said, trying to be jolly but it was a put on. My kid doesn’t want me. What an ingrate…that little schnood! (a word of affection that was developed in my family years ago). My feathers were a little ruffled and I mumbled briefly. What did I do to him today? Nothing out of the ordinary happened. Is this what is to come? My thoughts were skipping all over. Never you mind, Adam. I’ve been here for you all along and no matter what you think, I’m always going to love you. Then I started Googling in search of what age boys start really wanting their fathers.

As much as we want our kids to want us in a divorced situation, I welcome Adam’s need for his dad and other members of his family. It’s a new kind of separation like watching a child graduate or leave the house for the first time. While I am celebrating Adam’s growing independence and associations, I feel that this breaking away is just the beginning, and I’m a little sad too.

Everyone always said to me while Adam grows up, “consider yourself lucky that your kid doesn’t talk back to you.” That was always difficult for me to reason, as I longed to hear Adam’s voice and more complex thoughts, or his yelling at me that he was going to visit his friends. Thanks to his typing and his growing verbal ability, this is slowly changing, but having him grow up is surprisingly challenging in a way I’ve neither experienced nor expected. Is it perhaps more challenging when we have to let more dependent children “go?” You’d think I’d be jumping for joy, and while I sort of am, I missed his need of me. All sorts of “separations” were running through my head — all good, natural and still, emotional.

I want Adam to feel safe to feel and express whatever he needs. To help Adam, I started talking about his dad at the dinner table, and he was very attentive.”Daddy is funny isn’t he, Adam,” I said. He looked me straight in the eye and smiled. “Yes both mom and dad really love you.” I kept talking about love while drawing raindrops and animals with Adam at the table after dinner.

At the end of the evening when everyone was gone, Adam looked in my face; his eyes regained their sparkle for me. Then, he leaned in to give me a kiss. We went through our usual wind-down routine in our quiet house — a shower, teeth-brushing, and I’ve helped Adam become more independent doing these basic things. He climbed into bed merrily in his p.j’s with the dogs on them, carrying a book on How To Draw Insects.

“Mockingbird,” he asked as he burrowed himself under the duvet. It’s a song I’ve been singing to him since he was a toddler. I turned off the lights, snuggled alongside him and started to sing softly.

He didn’t tell me to go away.

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.

The New Technology and Autism Awareness

Filed Under (Autism and Intelligence, Autism and Learning, Communication, Development, Uncategorized) by Estee on 15-02-2012

This article on technology and autism appeared in The Globe and Mail today.

I’m worried that some people will view it as another autism miracle. Don’t get me wrong, I’m ecstatic about the iPad and other technologies and the awareness this brings about autistic intelligence. I have cited the research about the EEG’s and FMRI’s in previous blog posts where it shows the brains of non verbal individuals with various severe disabilities lighting up like typical brains. In other words, we have evidence that many non verbal individuals can understand what is said to them and have complex thoughts. What was presumed as “functioning at a level of an infant” can no longer be assumed.

I feel compelled to remind readers and hopefuls of a couple of things. The first being that non verbal individuals with various “severe” disabilities (I use quotes because of the way that’s been so misunderstood in terms of intelligence), have been using devices for years. Typewriters, computers, Vantage Lites, Lightwriters and more. With Adam, I chose to use the Alphasmart Neo because it was cheap and portable and I could download our conversations onto the computer. Yet all it offered was the chance to practice typing. It did not have the windows and picture symbols of other programs found in expensive devices. Now the iPad provides this.

Many of these devices are so expensive that it is not feasible for many families to obtain them, costing upwards of sixteen thousand Canadian dollars. Repairs can also cost thousands. The advent of devices like the iPad makes communication so much more accessible, although many adults and families can still not afford them. They may, however, be easier to get into their hands through schools and subsidies.

My point is that we’ve known for a long time that technology is important, and that autistic individuals can communicate with them. It’s not a sudden miracle or epiphany, I hope, to realize that autistic people are intelligent, and the community is as diverse as any other, meaning, that levels of ability and intelligence are variable in every group that we are trying to define.

Now to my next point. We can’t expect to plunk an iPad into the laps of our children and expect them to know how to communicate with it.

Just over five years ago, I began typing with Adam. I found I had to facilitate him by supporting his lower forearm. If I had not, he would have typed the letters over and over or typed a word he loved. It continues to be a challenge to get him to focus because open-ended communication is very difficult for him. Supporting him did not mean I directed him. I learned by people at the University of Syracuse, and through my own studies, how to support him and apply, in his case, a backward resistance pressure. By actually holding his hand back from the keyboard, he had to type with more force and intention and this seemed to help him complete a sentence. I neutralized his hand in the centre of the keyboard and he went from there.

I received a whole lot of criticism because of the FC controversies back then. I still did not give up. I knew, because Adam could read since eleven months of age, that he was a candidate to become an independent typist and communicator.

Fast forward five years later and we’re still at it. I’ve been observed by many Centres and professionals and I’ve not known a lot of what Adam types in order to prove that his communication is reliable. I do this by asking him questions or talking about things he did that I would not know. I have to keep my skills in check.

Today, he types somewhat independently. He sends me a short email everyday from school, primarily because they have not been trained in supporting him. If I need to support open-ended communication, my hand is further back on his arm. He will usually say the word or letter now before he types it and he types fast that if I don’t slow him down, he may lose sight of what he is trying to write. For communicating wants and needs, Adam can verbalize or type on his own. Give him YouTube, and he’ll type whatever he wants — from “water slides,” “Walt Disney,” and “Psychedelic Cartoons.” We recently visited an AAC expert (Augmentative Assistive Communication) and her response to my support was that my method was not very “facilitated,” just some marginal support. Not only that, all the nuanced support I give him all the way down to my patience and energy is difficult to document, but so important in teaching how to use a device for “functional” or “social” communication.

Adam also uses picture symbols on devices. For this, he can communicate mostly on his own, unless he gets distracted or is very anxious. When an autistic person is anxious, communication tends to fall apart. Text to speech functions have enabled him to speak in full sentences.

We are still learning. My point is that I am always learning to be an effective and patient communication partner. Reciprocal, social, open-ended, unpredictable communication is not so easy for him, and many other autistic people like him. While technology is a doorway, we can’t just open it without excellent guides, or without the commitment to keep at it for many years, even perhaps when it seems as if we are making little progress. When someone says to me that “Adam doesn’t type with me,” I immediately know that there is a lack of training or understanding what being a communication partner really means. It is an affirmation that the expectation and onus falls upon the autistic child — not the parent, therapist or teacher.

My hope is that, in addition to providing much needed resources like communication apps and iPads, we have better understanding and training to engage with autistic people as they are. Adam mostly communicates in metaphor. His language acquisition is unique and different than that of his typical peers. He could read and count by eleven months of age, but he couldn’t “talk” to people. Certainly he didn’t stop acquiring language or learning after that! As I’ve watched him over the years, I try to see the way he scaffolds his language and knowledge. His language and way of seeing the world seems mostly associative, symbolic and visual.

The iPad and other accessible technologies are encouraging in so many ways. I hope that the EEGs, FMRI’s and the other “proofs” we seem to require from autistic people in order to validate them, also lead to an enthusiastic desire to understand autistic people — their value, humanity, and of course, how they learn.

Keep It Simple Over the Holidays

Filed Under (Acceptance, Development) by Estee on 23-12-2011

Every year I get asked, “what does Adam want for Christmas (or Hannukah as we celebrate both). I’d like someone to come and take a look at our basement and ask that question again. I’m about to divest years of collected toys and games that therpaists and teachers told us to buy; all in the hopes that it would trigger some reciprocal play or learning in Adam. The same is true for all children. Children are marketed to (and young parents) that every toy will give our children some developmental edge. While I do find many things cool and some even helpful, I believe autistic children are special targets to such marketing ploys.

This is what I bought for Adam this year:

Two 2012 monkey calendars — both identical so we can write out his week and he can predict his day. So he will use one at home and one at school.

One small game of tick tack toe because he is enjoying simple games now with others.

One book. An illustrated Alice in Wonderland.

No more. As I divest the things that we’ve accumulated over the years to clear out our heads, I am also trying to make room for creativity. We are so eager to see a typical response in our autistic kids that we buy, buy, buy. We don’t believe that boredom for the autistic child is as valuable as it is for the neurotypical one.

When I leave Adam alone, I often find him playing with a plastic monkey we bought at the jazz festival this past summer. Or he’ll pull out some favorite books or another toy that he’ll begin to explore. As Adam cries when he’s really frustrated, and after I’ve checked that he’s safe, I leave him to his own devices. I am trying to help him develop his own “struggle muscle,” and not rush in to save him. This helps him now to self-regulate, and it’s working.

It’s best to leave, says Kim John Payne, M.ED and author of the book Simplicity Parenting: Using the Extraordinary Power of Less to Raise Calmer, Happier and More Secure Kids, just a few toys and books on the shelf. It avoids stress and confusion. Store some away, and give away more. I know he’s talking about neurotypical kids, but he does make a lot of references to ADHD and learning disabilities too. As we think of typical kids so we must of autistic ones — we must believe that as Aristotle said, every person as an essence. We are all meant to become something by our intrinsic nature. We can’t develop that nature if parents constantly buy toys to entertain kids. They need to be left alone. Aristotle used the term “telos” to describe it:

“An acorn carries its telos within, from the beginning. Beyond our genetic gifts to them, beyond what they absorb from us and their environment, children seem to arrive with something of their very own, a telos, or intrinsic nature. The essential nature, apparent from the beginning, also points to their future, as an acorn suggests an oak. Our children come to us with a deep destiny — here again, some say spirit — that needs to be heard. It must be honored.” (p.33)

It all makes sense to me as Adam is an anxious child and the more visual noise or distraction, the more confusing it must be to even approach a toy and explore it. In addition to recently enjoying the monkey and books (Adam has a wide array of interests), he has taken to climbing on his bookshelf and swinging from the rope used for his OT swing — a sort of Tarzan manoever that takes me back to my own childhood. Oh how he has fun doing that! He made that game up on his own, with a high surface and a small piece of OT rope.

“Simplification protects the enivornment for childhood’s slow, essential unfolding of the self. You needn’t be a therapist to realize that most kids are quirky, aren’t they? The truth is we all have our quirks, our personalities and idiosyncrasies. We tend to be more tolerant of them in adults, perhaps because we think of adults as ‘fully formed’ and children ‘under construction’ and thus more malleable. Why simplify? Over the years, I’ve come to see how a child’s quirks or tendencies can be exacerbated by cumulative stress.” (p.26)

We have guests over tonight and Adam enjoys that. I’ve had a lot of people over to our home because Adam enjoys people and he’s in his familiar environment where he is able to relax and particiapte more than going to someone’s strange house. Tomorrow we’re at his grandparents like we are every year. We have a quiet Christmas, our small family. We just want to be together and we don’t need stuff to prove our love. I’ve moved from being an anxious parent to one who is really beginning to see how much Adam needs and enjoys my time. No thing can replace that. No thing can also replace what he imagines for himself.

Happy holidays to everyone. I hope you have a very simple and peaceful one. Adam and I will enjoy our New Year… giving our things away.

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.

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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.