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Jul20
The Education of Kids on the Spectrum
20 CommentsI’ve decided not to pursue volunteering at the local school for autistic youth, and on Friday, I wrote a short email to my contact person to let her know. I’ve concluded that she is a very nice, enthusiastic, well-intentioned person who cannot focus on what I’m saying to her. I’m troubled that we weren’t able to have a meeting of minds, but I’m starting to put my energies elsewhere.
In the course of the entire process, however, I’ve found myself with a number of questions about the outcomes for teaching autistic kids—questions for which I have very few answers.
The school in town has a very focused and well-articulated mission statement. Its goal is to prepare students for paid employment, independent living, and integration into the local community. To these ends, the school a) implements an educational plan for each student that is largely driven by the special interests of the student, b) teaches independent living and vocational skills, c) provides training in social skills (such as how to make and retain friends, how to read nonverbal cues, and how to socialize in a group), and d) offers physical fitness and sensory integration work. The school makes use of different autism treatment options, including ABA, depending on what works for each student and family.
In short, the school’s aim is to integrate autistic people into the community by teaching them how to survive in a neuro-typical world. It’s a very good idea to give kids as many skills as possible for navigating the world they live in. The younger people who have posted to this blog have very positive things to say about the sensory integration work, social skills coaching, and other strategies that have helped them thus far. I wonder how we older autistics would be doing if we had had access to diagnosis and treatment when we were younger.
By the same token, I wonder what will happen to the younger people when they start to reach their thirties, forties, and fifties. Will life begin to feel more difficult because they have been making use of skills that do not come naturally to them? Will the work of integrating themselves into the larger community prove to be something they cannot maintain over the course of a lifetime? And if so, what support will be available for people who have been labeled high-functioning and have the resume to prove it?
I ask these questions because I have heard from so many people in mid-life who talk about the necessity of letting go of social adaptations that have become debilitating. I hear from people who feel housebound. I hear from people who can no longer work. I hear from people who have difficulty keeping food in the refrigerator because they have such an aversion to going to the grocery store. In other words, I hear from people like me.
I liken our situation to that of a friend of mine who had polio when he was a child. The illness left him partially disabled, but in his 50s, he began to feel unexpectedly and seriously debilitated. He found out that he has a condition called Post-Polio Syndrome (PPS). An article on the website of the National Institute of Neurological Disorders and Stroke describes the apparent cause of PPS in the following way:
“The poliovirus attacks specific neurons in the brainstem and the anterior horn cells of the spinal cord. In an effort to compensate for the loss of these neurons, ones that survive sprout new nerve terminals to the orphaned muscle fibers. The result is some recovery of movement and enlarged motor units.
Years of high use of these enlarged motor units adds stress to the neuronal cell body, which then may not be able to maintain the metabolic demands of all the new sprouts, resulting in the slow deterioration of motor units. Restoration of nerve function may occur in some fibers a second time, but eventually nerve terminals malfunction and permanent weakness occurs.”
In other words, the neurons that survive the poliovirus end up supporting not just the muscle fibers they were made for, but the muscle fibers whose neurons did not survive. After many years, the neurons that have been carrying all the extra weight begin to break down under the strain. The result is a second loss of functioning that can include increased fatigue, muscle weakness, and even muscle atrophy.
I raise this analogy because it so aptly expresses what many of us older autistics are feeling. We have an autistic neurology, and we’ve asked it to adapt, in a number of very complex ways, to the aims and values of neuro-typical society. After a lifetime of trying to pass, one person’s autistic nervous system can feel as though it’s done the work or three or four nervous systems. Last week, I said to Bob, “When you visit your frail 93-year-old father, please remember that how he looks on the outside is how I sometimes feel on the inside.”
I wonder whether the members of our “sink-or-swim” generation are feeling these effects because we had no educational supports, no therapy, and no explanation as to who we were. Perhaps because we were flying blind, we worked against ourselves for a long time, in a multitude of ways, and we unwittingly harmed ourselves in the process. After all, who wouldn’t feel tired after forcing a very sensitive neurology to support decades of neuro-typical activity?
Will the generation coming up fare better than we did? I hope so, but I have my concerns. In addition to learning social skills and sensory integration techniques, are the younger people being taught to have respect for being autistic? Are they being encouraged to value their autistic traits? Are they being taught to pay attention to their sensitivities? Do the people who teach them understand autistic people, or are they just looking to change behavior so that their autistic students will appear to be like everyone else?
So little research has been done as to the long-term effects of being autistic in a neuro-typical world. My generation, in its ad-hoc attempts to deal with a nameless condition, is all but invisible to the researchers. I hope the next generation will make itself better known.
© 2009 by Rachel Cohen-Rottenberg
20 Responses to “The Education of Kids on the Spectrum”
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Rachel, I’m glad you’ve gotten closure with the school, albeit not the way you were hoping for, and I can hear the annoyed frustration that communication went so haywire when you were so clear. It does boggle the mind that many people cannot hear the words we say. How is that possible, I often wonder as my eyes bug out and my fists clench.
I often wonder how my life would have been different if I’d been diagnosed as a child. Assuming today’s understanding and interventions had been available to me then, I like to imagine that I’d have had the best of both worlds: all the hard-won NT skills I have today, plus choices informed by my autistic neurology. I’ve explored this on my blog, mostly in the context of my failing NT-emulation software and the overload that my ignorant choice to marry and have kids brings on a daily basis. I might not have had my family if I’d known I was autistic long ago. It’s hard to know whether that would have been better for me; from this vantage point, it sounds very barren and lonely. Maybe, knowing about my autism, I’d have been able to structure marriage and motherhood to work with my neurology much better, right from the start, instead of scrambling desperately to do so after the fact.
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John Dale Lyons July 20th, 2009 at 6:14 pm
I was not diagnosed until adulthood, however my parents realized I wasn’t typical. I was left back for a year before starting first grade; not for academic reasons but for social ones. Other than that I was mainstreamed, but I still struggled socially. As I got older, the situation improved with a combination of therapy and life experience. I wish there had been a more structured program in place back then, for kids like me, though. It would have made things easier.
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i share some of the same fears, for the young people and for myself. i can guess at what’s happening to me, as these behaviours i taught myself start to break down, or cost me too much, in energy and sense of self, in comfort. what i don’t know is what will happen next. but that, i share with everybody else, NT or AS.
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I’m glad too that you’ve gotten closure with the school. It seems to me that you probably wouldn’t have been happy there.
I do worry about children in “special needs” and children in “special schools”. Sometimes I think that these classes are teaching them to pretend to be neurotypical, which IMHO leads to issues over time.
I’m often telling aspies to be themselves. Nobody else is qualified to judge us. We’re the experts on ourselves. We don’t have to fit in with someone else’s picture. We just have to stay within the limits of the law – everything else is our choice.
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Well said, Gavin. I agree with you 100%.
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The problem comes when you desperately want to fit in with someone else’s picture – which I did as a child. I worked extremely hard to be able to do so; these are my hard-won NT skills. Might I have been able to acquire them more easily if I’d had some guidance? And might I have let go of trying to force square me into a round hole earlier if I’d known about myself earlier?
Offering autistic kids the chance to learn how to fit in when they want or need to, paired with helping them understand and accept the way they tick, seems to me ideal.
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I guess I’d rather *pretend* to be neurotypical – or, rather, know I’m temporarily producing behaviors that help me get along in the outside world – than think I *am* neurotypical with the attendant difficulties that brings.
And, no, no one is qualified to judge us, but that doesn’t mean it doesn’t happen – sometimes with devastating consequences. Taken to extremes, you get things like gay men beaten to death. A little bit of strategic fitting in is a very good thing, provided you’re still able to honor your core.
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I think the kids today may have it a bit easier, if someone teaches them how much they need down time to recover, something we are all learning now and our down time tends to be thought of in days and weeks instead of the minutes and hours a younger person may need.
I think whenever a person has to override the natural tendencies of their behavior repeatedly throughout their life, it creates an anxiety within themselves. That anxiety doesn’t ever get expressed because any expression of it is a meltdown and we know meltdowns are not good (tongue in cheek). Stimming, another way of dealing with the anxiety is discouraged or punished. (Unless it takes the form of an accepted activity like knitting. I knit and knit about 4 to 5 hours every day.)
So we keep shoving that anxiety down, never releasing it, and end up with missing teeth from clenching them so tight for years on end, take refuse in our house/room to avoid dealing with real live people (bless the internet), and spending our old age alone with people referring to us as the mean old lady/man with 100 cats that lives in the corner house.
Not allowing who we are to be who we are creates all kinds of problems both physical and psychological. It reminds me of a character in one of my favorite books. He was born left handed and the school master tied his left hand behind his back and made him use his right hand. His new wife asked him if he could still write with his right hand. He said, Yes, but it gives me a terrible headache.” We can act normal even at our age, but it does cause a terrible ache if sustained for too long and too big of doses.
I think this school, like most of the special ed my autistic grand kids are involved with are more about teach, especially the deeply autistic, to act normal out there in the real world and not to accept themselves, their limitations, skills on pushing their limitations and recovery from such pushing. I think it’s good to gently prod an autistic to try something new and see if it can be incorporated into their life, but accept no as an answer if it’s not tried or tried and rejected. And that no needs to be accepted neutrally by both the autistic and the “pusher.”
Good post, Rachel. It invoked a lot of thinking.
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Saja, there’s definitely nothing wrong with strategic thinking, as long as a person is in control of what they’re doing. The problem is that passing for NT, for me, is often an automatic response, because I was taught that there is a certain way to be that’s acceptable. That means that I act NT in situations in which I don’t need to. I’m not going to walk through a scary situation looking anything but brave, strong, competent and ready to kick ass, but to live as though the whole world is that kind of scary situation is exhausting.
As for the extreme consequences…I used to live in the Castro in San Francisco, and the openly gay men who made up most of the neighborhood were always candidates for gay bashing. However, rather than hide who they were, they banded together to protect one another. It was amazing to watch a bunch of straight guys walk into a bar and try to cause some trouble, and see them chased out two minutes later by a bunch of neighborhood guys wielding baseball bats. For the men in the neighborhood, coming out was an act of courage, because being closeted anytime, anywhere was just impossible. It divides people against themselves, which means that people can’t be who they’re meant to be.
I’ve adjusted myself to the world’s expectations from day one, and it seems vitally important that I start asking the world to deal with who I am. That doesn’t mean that the world will assent, but I have a right to expect that it will, just as any other minority person does. My married gay friends may not be accepted in many places outside of New England or Iowa, but that doesn’t mean that they don’t have a right to demand it everywhere.
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“I’ve adjusted myself to the world’s expectations from day one, and it seems vitally important that I start asking the world to deal with who I am.”
what she said.
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DonkeyBuster July 21st, 2009 at 2:22 pm
A slightly different take… or angle… or something.
By utilizing the different strategies and integration techniques at young ages, wiring changes are being made. The brain’s neuroplasiticity is much greater in a young brain, so by taking advantage of sensory integration techniques (for example) it’s possible that the brain is being permanently wired to properly integrate better, therefore the overload problems will be decreased.
I think there are definitely some advantages to taking advantage of neuroplasticity. There’s certainly good solid evidence that vipassana style meditation grows the frontal lobes, even into middle age. This is important in emotional regulation…
There is of course a limit to how far it can go, but I would think that if early training could result in better executive function and reduce the sensory integration difficulties, then more autists would be able to apply their unique talents and traits in an effective manner.
However, I have not seen anything that indicates growing or developing mirror neurons or neuronal pathways necessary to automatically read/translate body language is possible, so the social aspect would still be on a cognitive level. With the possible decreased stress due to better sensory integration and more effective executive function, it may be that socially functional skills will be maintained for longer.
I think an article about neuroplasticity and the autistic brain would be fascinating….
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Great points, DB.
There’s an article that deals, in part, with the (theoretical) hyper-plasticity of the autistic brain. You can find the article at:
http://frontiersin.org/neuroscience/paper/10.3389/neuro.01/1.1.006.2007/html/
I wrote a June post on the article, which you can find at:
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DonkeyBuster July 21st, 2009 at 5:54 pm
Interesting article, though I’d have to study a bit more (like a lot more) neurobiology to properly assess the validity of its model, etc. It doesn’t address my question of rewiring the brain through appropriate targeted therapies, however. The authors posit possibilities similar to those I put forth in their conclusion…
” In terms of behavioral treatments, the hyper-plasticity offers an immense scope for rehabilitation therapies that are based on excessive positive reward and comforting approaches and that avoid direct punishment, which may lead to a lockdown of behavioral routines. It may well turn out that successful treatments could expose truly capable and highly gifted individuals.”
To whit… that the young brain is malleable and therefore it is hopeful that more autists will be able to actualize their gifts.
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I can tell you that now in my middle 50′s, I’m much less able to maintain any high energy activities like socializing than I did in my 20′s. And things were not that great then. It was very common for me to come home after a work week and needing the whole weekend alone just to recover so I could do it again the next week. I never understood where people got the energy from to go out and party on Friday and Saturday nights. Now I understand that I was putting out 2 or 3 times the energy of everyone else just to be around people all week. If I had to hold down a full time job today it would probably kill me.
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Another well thought post, Rachel! Whenever my SIL mentions her young son’s strange autie habits I try to interpret why I might have done the same thing and I think it helps. Thankfully she’s a mom who is happy for her kids to be happy in their own ways and only pushes him in tiny increments.
I do wonder about a school that is for autistic people that isn’t able to accommodate an autistic person as a volunteer. Learning to articulate needs is important for every person but especially for us as it seems ours are not easily guessed at by others. NT or not. Looking at things online I find so much well-intentioned autism awareness stuff insulting because it defines us as somehow broken, damaged, or incomplete. Makes me want to produce a line of tees for “NT Awareness.”
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It seems that one of the main issues here is what does it take for an AS person to be able to interact in a positive way with the NT world. The parallels to gays can go only so far — as do parallels to any “other” group, such as a religious community. In these cases, people have each other as support — Rachel’s Castro experiences are a great example of the power of a supportive community.
But is it possible — or advantageous — for spectrum folks to create their own community? I suppose that could work but, as with any homogeneous community, it also creates its own problems. Comments on this blog seem to indicate that the “conscious coupling” of spectrum and NT can work when it is allowed to. Rachel and I struggle with this all the time: finding the balance that allows each of us to hear and support the other. And I know it isn’t easy for us, and the blog comments give me a glimpse into some of your lives too. I’m noticing that, as much as I can accept our reality, I’m still in the “bargaining” mindset — still thinking or hoping that this isn’t really happening or that somehow it isn’t as difficult as it seems. I know I’m trying to move myself into the “accepting” mindset, one that will allow me — and us — to face our reality as a couple and take the steps that will allow both of us to continue growing and supporting each other. Just knowing that there are other people like me out there struggling with these same issues certainly helps me!
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Bob! What an honor! Wow!
(We readers of Rachel’s blog pretty much worship the ground you walk on.
) Seriously: it’s great to hear from you directly, after hearing so much about you from Rachel. On young autists actualizing their gifts: part of my difficulty now is the feeling that my autistic gifts have been denied breathing room by my NT coping skills. There’s been no time or space for them for forty years. Like Rachel, I do and have done NT all the time, rain or shine, necessary or not. So I certainly agree that autistic kids should, above all, be given the freedom to discover themselves, and that NT emulation should be part of a toolbox, not a way of being.
I also agree that ideally, people should be free to be themselves, wherever, whenever. But I am not that naive. Nor do I think the world will ever be a place without discrimination and fear. That seems to be an innate component of the human condition; there are always people who dislike what is not like them, and apparently fear it enough to want to destroy it. I don’t understand it, but it’s been around since there have been humans, and I doubt it will disappear.
Rachel’s “banding together” example does help, of course. Applied on a societal scale, it means changing laws and educating people. Abolishing segregation. Making gay marriage legal. Long-term societal change that bands large, diverse communities–not just the gay guys in the neighborhood, but the whole neighborhood, city, state, and country–together to protect their members against those few whose gene pool or upbringing or both makes them need to harm someone different from them. This takes time, and I think it’s happening for autism, as the outdated view of head-banging mutes in a corner is replaced by the rich variety of the spectrum, and people like Amanda Baggs show the world that even the least NT-like autistics ARE “in there” and communicative.
But for those inevitable moments when you’re alone with the intolerant, a little strategic fitting in is a very fine tool to have.
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Jennifer July 22nd, 2009 at 6:28 pm
When I read about you Rachel, you are an example of someone who is an academic success, and a social success in the sense that you have formed strong and intimate relationships with others (especially your husband and daughter.) I have read a lot about Asperger people being less able to connect with others emotionally enough to satisfy other’s needs.
My daughters struggle with school. One has discalculia, daydreams, and works slowly- not completing her work. The other is “young” for her age, so will be skipping one year so that she can play longer before she has the pressure to learn to read.
It would be great to have academically gifted children. I wonder, if I had been less accepting, would they have been academically better? Would they be forced to have a different brain-wiring? They are intelligent, but at this moment are unable to demonstrate it in a conventional way. I have loads of questions like these, but only time will tell.
Both children seem happy, but I do wonder whether they really are, and to what degree.One of them has frequent headaches, for example.
I don’t have a strict routine. One morning I can dress them first, and then we eat breakfast. The next day it could easily be the other way around.
Should I be accommodating a rigid need for structure (if there is one), or is it good that they experience variation? It’s not easy to know what is best for them.
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Bob has made a point that i have been cogitating on myself for some time: can people with AS have a cohesive community? should we? the problem with being in a ghetto, mental, emotional or physical, is that eventually we have to deal with the rest of the world. how good can we be at this if we never need to deal with it?
there are times when i’m glad i have the skills i have to deal with regular people, and think if i were in a room of people who were too much like me, i would go crazy -
Taylor Selseth October 27th, 2009 at 12:50 am
I am constantly torn between the competing desire to fit in and to relate to others and on the other hand to be myself and not overwhelm myself to meltdown. I will do something with friends, and then regretting it later and hating myself because its something I really like to do, it’s just that my brain can’t handle it.
Ah, the joys of being an Aspie of the INFJ personality type…
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About Me
I'm Rachel Cohen-Rottenberg, and I publish this blog, Journeys with Autism. I'm a wife, mother, writer, singer, artist, photographer, community volunteer, and the chapter leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN).
At the age of 50, I awoke to my place on the autism spectrum and discovered a world of gifts, struggles, and life-changing possibilities. My latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. My work has also appeared in Shift Journal of Alternatives: Neurodiversity and Social Change and in the Disability Rights and Neurodiversity section of the ASAN website.
My Memoir
"The Uncharted Path is an autism autobiography unlike any I’ve ever read.....I’d recommend The Uncharted Path to anyone on the spectrum, to anyone who has friends or relatives on the spectrum, and to anyone who cares for people on the spectrum. Her book is written straight from the heart.” —Gavin Bollard, author of Life with Asperger’s
“Cohen-Rottenberg is emotionally honest and skilled at relaying the stories from her childhood and adulthood that made her the person she is today....A highly recommended read."—Kate Goldfield, author of Common Scents: Adventures with Autism and Chemical Sensitivity
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Rachel Cohen-Rottenberg
rachel@journeyswithautism.com
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