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.

 

 

 

Talking About Autism & Building Community

Filed Under (Autism Theories, Autistic Self Advocacy, Community, Language, Media, Research, Uncategorized) by Estee on 11-11-2012

How can The Toronto Star and by many autism charities address the diverse needs and views of the autism community? My concern is that there is little (if not any) of critical disability perspectives. Typically, journalists run to autism “experts” with medical backgrounds and this becomes the only lens through which we have come to understand and view autism. Autism, a classification imagined and made by humans, has become reified. This essentialist view is the most troubling for our community.

My questions of late are: How can we facilitate a respectful discourse among autistic people with different experiences? How can we include non-autistic family members into the dialogue who are also stakeholders, but whose very involvement in autism charity (which directs research) can be considered based in positivism and reflective of an imbalance of power? In other words, concerning the latter, as non-autistic parents and medical “experts,” we impose a concept of normalcy that we are discovering through autistic communication of experience that, in fact, is different from how many of us non-autistic people view things. We (typicals) consider our viewpoint over and above the experiences of autistic people. We produce knowledge that is language-based and that is taken as more true and accurate. I’m also very curious how we all appropriate such impositions upon our own identities? For instance, if you are given a narrative about yourself (autistic or not) and how you must be, do you then turn it inward (this has also been refered to as internalized ableism or oppression)? How does this effect the questions posed here?

Autism charities, researchers and news media need to consider these questions to reflect the broader autism discourse, even when many views run counter to their marketing campaigns and economic research interests (or should I say, especially when). By doing so, we may discover ways to better address the real needs of autisic people specifically. I’d like to see autism charities take up this dialectic discourse. It doesn’t have deadlines or meet fundraising goals, but this is what our community needs the most. I get concerned when autistic individuals are folded into big charities largely populated by non-autistic interests.

Feminist research has pointed to a constructive confrontation. “bell hooks (1990) declares the need for ‘meaningful contestation and constructive confrontation between different perspectives and urges the creation of safe spaces where critical dialogues can take place between individuals who have not traditionally been compelled…to speak with one another.”(Hess Biber, Leavy, 2007)… constructing a space that is open to dialogue across… voices are granted equal air time, we actually build community…” This comes from feminist research methods which has changed the way we have been able to do research. Both feminist empiricism and emancipatory methodology can provide useful examples to the way we approach autism research and community.

Reference:

Sharlene Nagy Hesse-Biber & Patricia Lina Leavy, Feminist Research Practice, London, Sage Publications, 2007.

If you are interested in a Media Analysis of Disability, See the Research done by Disability Rights Promotion International.

Reflections On Our First Decade

Filed Under (Acceptance, Adam, Advocacy, autism, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism Theories, Autistic Self Advocacy, Discrimination, Estee, Ethics, Family, Joy, Single Parenthood) by Estee on 11-01-2012

Tonight Adam asked to be carried to his bed. “Carry!” he implores. He has a determined look in his eye. Usually, he climbs into my lap and expects me to carry him to his bed. So I let him again, and cradled him in my arms, trying not to hit his extremities in the doorway.

“Adam, you are getting too big for this now,” I say, my neck and back feeling strained. I carry him into his bedroom and plunk his heavy body on the soft bed.

“I’m not a caterpillar anymore!” he says melodically, and smiles.

“That’s right Adam!”I am pleasantly surprised. It is a rare lucid statement. With all his movements and chants, for the unexperienced, it is difficult to believe Adam is understanding, or paying attention to, many things. Yet I’ve always known he does, even on the days I get frustrated when he can’t respond.

There is a story that Adam The Caterpillar and the Polliwog by Jack Kent. He is using the line from that story and I know he has associated my discussions about him becoming a big boy to the story. “You are not a caterpillar anymore. You are a butterfly!” Adam lifts his head from his pillow. With a big smile, he plants a kiss on my lips and lies back down, contented. I turn out the lights and say goodnight.

I’ve been thinking a lot about Adam and his growth over the past year. Over the New Year, I’ve been thinking how this will be Adam’s first complete decade, and my first decade as a mom. I simply cannot believe that it’s been that long as I remember our journey with autism and with each other.

Adam was diagnosed with autism at 19 months of age and I began writing privately in coffee shops about our experiences when Adam spent a couple of hours in pre-school. I started The Joy of Autism blog and running the events of The Autism Acceptance Project when Adam was three years old. Reaction to my blog and title of the events (The Joy of Autism: Redefining Ability of Quality of Life) were met with both applause and contempt. Today, we read about the joy of autism and parenting an autistic child much more often. Then, parents who were struggling with challenging behaviours and expectations of a cure, challenged me. What did I know?! questioned many parents of slightly older autistic children who were being phased out of services. Wait until your autistic child grows up, then you’ll be in big trouble; you’ll see what we are going through. He won’t be cute forever! I suppose we’ve now reached that same stage. While Adam can still be cute, he is quickly becoming a pre-teen.

In the past decade, we have struggled with acceptance, understanding from others, and in finding a great education. We deal with stigma, and having to justify why we behave as we do. As parents, we are sometimes pitied or called heroes. It’s hard to be a normal parent in the “outside world,” even though autism is our normal. Having to justify our children, and their right, need, and desire to be included can be exhausting if not downright heart-breaking. We keep going out there every day as we brush disappointment off our weary selves. I suppose this is brave.

I also realize, that as bloggers, writers, and advocates, everyone has an opinion. When there is no one cause for autism that science can find, the speculation gets polemic. The nexus of contention seems to be the nature of autistic being and intelligence; is autism a natural, “alternative” way to be human, or is it a defect of the human condition? Of course, I believe it is what it is, although throughout the years I’ve always questioned my own thinking. I still come back to the value of human diversity. Whatever the reason or the cause, I value Adam for who and what he is, how he thinks. I also recognize and try to assist his challenges. I cannot call him a defect. He is whole, loving, able, with his disability. I can’t think of my life without him in it. He requires the extra effort of all to understand his differences in order to enable him. Being constantly challenged for my beliefs has been exhausting and emotional at times. The blessing of this first decade has been the deeper recognition and understanding of the values I held instinctively, and early on.

In the past decade of writing and talking about Adam and autism, I’ve been torn between sharing parts of our experience and our privacy. In the hopes of helping Adam’s future, I’ve seriously thought about whether or not to close the blog, especially since Adam’s first decade also included a divorce — a challenge for any child, and an extra challenge for Adam. I decided that not only does writing about experience help me as his mother, but that sharing is a gift we both give and receive. I was helped by the writing and sharing of other autistic people and parents. I don’t want to fear the sharing, although I’m continually challenged by this. Of course, it is my duty to protect Adam and his privacy, so I believe that every parent must choose our stories carefully. I’ve decided to continue writing.

I also can’t help thinking about the parents who had autistic children ten years before us. Many were the parents in Canada who argued for ABA to be covered as medically necessary treatment (the political argument still exists). Some parents found out about Dr. Lovaas in L.A. and even moved down with their children for treatment, and I may have done the same thing if Adam had been born earlier — maybe not. Adam was born in 2002. In 1992, ABA was turned to as the hope for the education and life skills training for autistic children. It was believed that ABA would be the way to shape the child’s behaviour and normalize them, in time for school. It seemed much more humane and reasonable than “holding therapy.”

The window in which to do this, they were told (and we were too) was five to six years of age. If a child could not talk or learn normally by then, the window of opportunity would close. The “early diagnosis is key,” notice, is also used for cancer, and I know from personal experience that yes, better to get a cancer early (another part of our past decade). Science, parents, autistic people, however, have proven that there is no such thing as lost opportunity. Autistic people need continued life-long learning. I like to think of that all of us require continued training throughout our lives to put this in perspective.

New methods and teaching approaches have been explored and integrated into many classrooms. ABA therapy has, to some extent, integrated different therapies into their own practice. By “operationalizing” these other methods and taking “data” it seems to have been rebranded as “Positive Behavioural Therapy” or “Support. While there is still controversy there because the therapy still doesn’t fully address the abilities and the nature of autistic perception and intelligence, one could view it as a step forward.

It is also difficult to let go of labels. Political policies are built on them. They are made for autistic people largely by non autistic people. Definitions and systems must be defined in policy, and this has been difficult for autistic people because their issues have not fully been acknowledged. So we must be cautious not to lose sight of the progress have made in the science regarding autistic ability, perception and intelligence. We must continue to work to answer the question on how we can best educate and address an autistic person’s needs, and how an autistic person can participate in society as they are. The dyslexic community had to learn and now so must we.

Ten years before ABA took hold in Canada, in 1982, Lorna Wing wrote her pivotal paper reviving the work of Hans Asperger and spotlighting Aspergers sydrome in her paper, Aspergers Syndrome: A Clinical Account. It was ten years after that paper that Autism Spectrum Disorder label and definition of the “triad of impairments” made it into the DSM IV. In thinking about decades, I thought back to 1972 when Ontario’s last mental institution was shut down. It freaks me out to think that Adam’s life could have been so very different thirty or more decades ago. He would have been even more segregated than he is today.

As I measure the decades against autism treatment, and treatment of autistic people, I see that in 2012, we’re learning more every day. We do so even in a perilous time when “designer babies” arguably threaten the continued existence of people with disabilities. Many communities like ours and the Down syndrome community grieve the loss of others “like” them as a loss of community. We’ve launched autism acceptance movement, akin to other civil rights movements, for the equal and fair regard of autistic people in our society. It is still a nascent movement of which most people are unaware. We have not accomplished full inclusion and accommodation. We still have not raised enough awareness.

As I think to 2022, when Adam will be twenty years old, I hope for the ability for Adam to continue his education and the welcoming of his assistants not because he is unable, but because he can be enabled with them. I want for his participation in his own life planning, pre-college/university prep, and vocational training that will be unique to the needs of him and others like him. I think of his life, like mine, as a continual learning curve — certainly not ending at the age of twenty one. I watch and read the other parents and autistic individuals ten years ahead of us, and wish to thank them for the paths they are forging.

I look ahead to the next couple of decades. There was a time I fretted about it until I realized that time is relative and all people develop as they should. I worried about Adam’s future and where he would live. Yet, I intend to hang in there with him, come what may. I had some very difficult moments after my divorce and raising Adam here alone and this is when my worries were at an all-time high. On one very low day, a calm and quiet thought suddenly entered my head, and it was filled with love. While autism may have brought me some of my greatest challenges, it has also bestowed my greatest gift.

I love Adam more than words. He has always been my pride and joy. I know that it is my duty to assist him, and to find others to assist him along the way who will help him become the man he is meant to be.

Maybe I just can’t believe he’s going to be ten years old this year. I turned on an old video when he was first diagnosed. He is twenty months and has the same smile, the same boundless energy. He is the same boy in a growing, lanky body. He is a butterfly.

Theories Serve to Guide Us

Filed Under (Autism Theories) by Estee on 05-10-2010

I enjoy listening to Uta Frith. I appreciate her ability to balance the way she views cognitive theories that help us “guide” us to answers. Also, I like when she states “explaining the causes [of autism] is not everything….we need to understand what it means.” Yes, we need to understand what it means to be autistic. We can only know and come to understand this by engaging with autistic people. Also, parents have so much to contribute via anecdotal accounts of how our children engage with us and how we come to view autsm by living with our children day-to-day. We all have something to contribute to the scientific process.

One thing to remember is the next time a news report states “a new study links…” which is something we seem to hear almost weekly, that this study is more than likely a theory; another stepping stone to understanding autism and our amazing children. Thinking of human difference, I thought I’d share this quote I found:

“An individual having unusual difficulties in coping with his environment struggles and kicks up the dust, as it were. I have used the figure of a fish caught on a hook; his gyrations must look peculiar to other fish that don’t understand his circumstances: but his splashes are not his affliction, they are an effort to get rid of his affliction and as every fisherman knows, these effects may succeed.”
— Karl Mennenger

Of course, I don’t view autism as an affliction, however, I do appreciate the effort of autistic people to manage the environment. I view it as natural to Adam who must do certain things to make himself comfortable again.

Protecting Little Joys

Filed Under (Acceptance, Adam, autism, Autism Theories, Joy, Research) by Estee on 04-10-2010

We have to protect our little joys. I was thinking of this as I was putting Adam down to sleep this evening. As usual, we read Dr. Seuss. He eventually yawned and put his head down on his pillow. It sounds “normal,” I know. Around here, hums, noises, hand-flapping, smiles, and some words (difficult to come by) are our normal. Also “normal” is Adam’s soft hair that I can’t help recounting over and over because he presses his head gently into my face before he drifts off to sleep.

Adam has adapted to his new school which will accommodate his special learning needs. Today, he brought home a Recognition Certificate for his accomplishments — on focusing and “completing daily tasks.” I thought it was a wonderful idea to recognize his accomplishments. I loved it also because Adam was full of smiles when he came home from school today. Thankfully, his cheeks are still so round that when he does so they just get fuller like the moon. Time has not taken them from me yet.

As his parent, I have a right to enjoy Adam’s brief childhood. I’ve been in this autism world for six-and-a-half years now with Adam (he is eight) and I’m always breathtakingly amazed with the copious amounts of information about autism, usually presented in dire terms, that infiltrate parents negatively and make them worry. We worry so much that we blog, enter information on Facebook and Twitter about autism endlessly. Okay, let me speak for myself by hiding behind the “we,” won’t you? If we’re not actively doing that, we at least read so much. Worrying about our children, autistic or not, seems to be part of the parenting job. We all want our children to learn. I am not against research or reading the information. Yet I do think it’s okay for parents to take a break from the autism tornados brewing out there.

Autism doesn’t steal our children. Fear and worry steal precious moments with our kids. It steals our happiness with what is. It might be the reason why I find it difficult or frustrating to read some things these days. We still need more “positive autism” out there.

I cannot think of times more special than these: reading to Adam, watching him smile, being witness to every accomplishment (no matter how minor), and simply putting him to bed, to name a few. Thinking of how quickly this will pass — when he will no longer have the famous cherub cheeks and tiny-voiced giggles, well, I want to know that while there was worry constantly spinning around us, and a race to make Adam “better,” that I really did work on being the calm within the storm. I want look back and know that while I served him well to find the best-suited education, I also took the time with him to just be happy.

Autistic Kids Not Prone to Contagious Yawning???

Filed Under (Activism, Autism and The Media, Autism Theories) by Estee on 17-09-2010

“The news
Just came in
From the County of Keck
That a very small bug
By the name of Van Vleck
Is yawning so wide
You can look down his neck.

This may not seem
Very important, I know.
But it is. So I’m bothering
Telling you so.

A yawn is quite catching, you see. Like a cough.
It just takes one yawn to start other yawns off.
NOW the news has come in that some friends of Van Vleck’s
Are yawning so wide you can look down their necks.”

How ironic that Adam and are reading Dr. Seuss’ Sleep Book nightly, these days, and I open The Globe and Mail to find a reiteration that autistic kids are not prone to contagious yawning.

I have to yawn. While I haven’t look at the actual study itself, it seems that “The diminished tendency to engage in a contagious yawn suggests autistic kids’ may miss subtle cues that tie them emotionally to others,’ the researchers write in the Journal of Child Development.” (The Globe and Mail, p. L5, September 17, 2010).

I’ll just say this: While autistic kids may have some difficulty with their imitation skills, yawning seems spawned by something more physiological. Adam yawns when I yawn… a LOT. Perhaps he’s part of that 11 % of autistic children who do yawn according to Geraldine Dawson. Adam will not yawn, however, “on command.” Sometimes I wonder if my little autie just doesn’t see the sense of it. I mean, some things we ask our children to imitate can be kind of silly. Therefore, I would not compare contagious yawning skills to pure imitation skills.  I’m not certain if the comparison should be used in determining if autistic children can figure out those “subtle cues.” As I said, natural contagious yawning for Adam comes, well, naturally.

Science has not at all discovered the nature of yawning. I feel compelled to qualify this just in case our autistic children may be prematurely described by yet another, interesting, but perhaps not quite precise theory. Yet, that’s what we get in the autism community, don’t we? A helluva a lot of theories, and autistic kids are the prime target.

“The yawn of that one little bug is still spreading!
According to latest reports, it is heading
Across the wide fields, through the sleeping night air,
Across the whole country toward every which where.
And people are gradually starting to say,
‘I feel rather drowsy. I’ve had quite a day.”

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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.