The State of Education for Autistic Children (as I see it)

Filed Under (Acceptance, Activism, Autism and Learning) by Estee on 01-02-2011

Big snowstorm’s coming. It starts tonight in Toronto and is supposed to continue into tomorrow.

Adam will be at home. He’ll work on his computer, I on mine. We’ll play piano and a few games. I still haven’t had time to complete his art studio. My work will have to go on hold.

Life’s changing here. Being a single mother has new challenges. I look for time to get things done, as it’s just Adam and I and there’s no one to help me in the early mornings if he’s up too early, or sick. That’s a big difference I’m sure many a single-parent will relate to. Time has become more limited when one has to rebuild, and even learn, from scratch.

So, I don’t like problems thrown at me all the time. I’m impatient. I expect those who say they are experts to help us, not throw the problems back in my lap. When it comes to Adam and talking with those who help him out, I’m not certain they realize that’s what I hear. Sure, we’ve got challenges. But it becomes overwhelming when things are constantly presented as a “problem.” Hearing this for seven years now since Adam’s diagnosis, and maybe this will make sense.

If you are a therapist or a teacher or aide, consider this: that’s all we hear from the time our children are very young. From a parent’s perspective, it’s not only very scary in the beginning, but later, it’s just plain exhausting. In the beginning we scurry like there’s no tomorrow becasue we are trying to find the best program or school placement, and that’s not easy. Perhaps if you are going to present a challenge, offer a solution. I’m fortunate in that I do have people with whom I can strategize. Yet, there are few options out there for autistic people, and even therapists are hard-pressed to be able to find places for us to go. Schools are scarce. Inclusive schools are scarcer.

There are few adaptive services. I spend hours each week not only filling out forms and getting on wait-lists, but also phoning to find suitable sports and other programs for Adam. This begs the question: why are there so few of them? Why can’t Adam learn how to play baseball? I remember how easy it was for my step-kids and all the programs they had to choose from. I’m trying to reach Special Olympics, Boyscouts, ski programs…it takes a while to hear back. For Adam, his options seem so much smaller than they were for his half-siblings. It’s not equal and it’s not fair.

Why should he have to go to an autism school if the autism school doesn’t fully integrate a vareity of tools to support Adam’s strengths? Perhaps I’d go to the autism school if I felt it treated him like the magnificent person he is, addressing the challenges he has, and training him as an autistic person to prepare for college, university, or some other vibrant future. Believe me, if I could find an autism school that was as robust as those belonging to the deaf community, I’d consider it. At least there, using the deaf community as a model, autistic people would be allowed to act autistic, and build their own strong community. Instead, I see schools addressing “autistic defecits” in an ABA format, which I don’t believe works that well for Adam, as it escalates his anxiety. (Side note: and can we hire autistic adult teachers, pleeeze). Repeating skills in that format is good (belonging to ABA and other methods), sometimes positive reinforcement is good, but it’s not very creative because it teaches not so much content as much as it is a way to teach someone how to answer and respond. It’s not necessarily a “bad” thing, it’s just not the only way to teach, and I fear it lacks the engaging content my son needs. It doesn’t foster creative behaviour.

You see, I think discipline is really important. It’s an art to teach a very young, challenged child to be focussed without also inspiring him and building his confidence. With Adam, this is especially difficult. Despite his communication challenges, he has pride, will avoid tasks that he thinks he likely will fail, and is very aware of his inability to communicate like other people. Force him to “put the puzzle” piece in for the 1000th time, and I don’t think that’ll do it. Offer him a candy to do a task, and he knows that if he avoids the task, he’ll get a candy. It works sometimes, but he’s outsmarts us. Still, breaking down tasks into smaller pieces, and repetition is a key to fluency and competence. Marry that with exploration activity and keeping the topics and materials moving along (he’s not a baby anymore), and that’ll keep his interest. I wonder if we just expect too little from him. An inspiring person/teacher, and tapping into Adam’s innate need to be proud of himself, and I wonder…

I don’t think that typical families understand the extent to which we have to hunt for places for our kids to belong, and I believe Adam has the right to be fully integrated and included into our community. I feel I am met with resistance, and I knew this would take a long time. I hope it doesn’ drag on well into Adam’s adulthood. This is a systemic problem. We simply don’t know how to teach autistic people, despite ABA being the purported solution. All we know is how to use a few PECS, schedules, and accommodate sensory differences. Sure, this is a big change from even a few years ago, but I’m becoming impatient. I have not seen any creative programming for autistic people. Is it because we don’t believe enough in autistic people to invest in fully inclusive programs that train facilitators in a vareity of methods that must then be uniquely applied to each individual? Instead, it might be easier to say that an autistic person has this defecit and apply a one-size-fits all solution. As I used to work in public art galleries, and also used to teach young children art through music, I’m thinking a lot lately of helping schools use an art program to teach other topics such as math and science. And if you want to see another extremely creative parent, check out Kyra and Fluffy at thismom.com. Kyra completely blows me away with her boundless energy and ideas. I’m not as creative as she is. I just hope people take a look at some the projects she works on with Fluffy (she homeshools him). I hope, using them as one positive example, that we never give up on autistic folk.

I meet wonderful teachers. I wonder why I don’t see the programs to place them because autism seems of great interest to many. When I consider Adam, I think of just last night as we practiced piano and how he became enamoured with the low G. As he continued to play it, I improvised. He smiled and we made music for over 30 minutes, coordinating together. I think of how he can get so focussed in art-making and all the things we can learn from making it. Art can be therapeutic, sure, but what of all those lost learning opportunities because our teachers are not trained in using these tools so easily accessible for Adam? If Adam is any example, he does well when we find a patient person who listens, who wants to learn how he learns, and who can accompany him in the community that he’s so interested in. I have a boy yearning to try new things. Thank goodness for his camps. There is has learned to climb walls, archery, and many other wonderful skills. He seems happiest at camp, learning from physical activity to quiet art and loves drama and creative movement — hmm.. we hear autistic people can’t do the latter, right? Not so for my guy.

I just thought I’d write this because we have huge scarcity in Ontario and I keep looking to autism websites here and don’t find much. Social skills groups are always full and I wonder what they teach anyway? How to say hello? Play with the plastic doll? Okay, that’s a skeptical comment, but what creative programming exists within the skills that autistic children need to also learn? We can inspire our children. People think we need autism schools, but that’s not necessarily the solution. It seems easy because at least that’s a place to put autistic kids. I like it that Adam sees everyone and that he be seen, and where he can feel competent as he is (this is a problem if we stick our kids in typical schools where they then remain on the sidelines). I still see people wanting to change him and fill in his “gaps.” Certainly, they exist; Adam has challenges. Yes, I hear about them all the time. I see them everyday. I am supposed to be teaching him at home more too — the onus is always on us. How much more time do we have?

Okay, just so this post doesn’t come off as a rant (I hope), here’s a link to Hopeful Parent. Maybe it’s the snowstorm coming, the large piles of paper I have to get through, and a team meeting coming up tonight.

I am hopeful. Maybe I can help out through teaching again. Just one of my many thoughts as I figure out the future these days.

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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.