Whose Planet Is It Anyway?

Thursday, December 18, 2008

The Lessons of Autism Awareness

In September of this year, Autism Speaks started a new program to encourage preschool teachers to talk with parents if they notice signs of autism in their students. According to Autism Speaks' executive vice-president Alison Tepper Singer, its purpose is to "ensure that kids who may have a developmental delay get the services they need as early as possible." Unfortunately, the reality does not always match the description.

I have a four-year-old nephew who started preschool in September. He is a sweet kid and very curious and intelligent, but he has some difficulty understanding and following spoken directions. It wasn't long before the teachers identified him as having autistic characteristics.

Did the teachers start a conversation about how they could better meet his needs? Did their increased awareness result in more services being provided to my nephew in their school? Well, no. What actually happened was that my sister was given two days' notice to remove him from the school. He had not been destructive or violent in any way, but the school apparently did not want to have any child with the scarlet "A" on its premises.

After looking into the available options, my sister enrolled him in a special-education preschool where he receives speech and occupational therapy. He seems happy in his new school, and I expect the therapy will be helpful, so it may work out all right. Still, there is something very wrong with our society when a young child's introduction to preschool turns out to be a firsthand lesson in the meaning of segregation.

More on Autism Speaks and Alison Tepper Singer: I've written a
guest post on Wrong Planet about Singer's close relationship with Michael John Carley of GRASP, who circulated an e-mail yesterday asking autistics and others to send letters praising Singer to Autism Speaks' president Mark Roithmayr. My advice to the autistic community: Steer clear of GRASP and Carley's collaborationist scheming.

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  • Your guest post is awesome.

    And so is this.

    We need more positive awareness, not just this vague nebulous concept we've got now. I'm sorry your nephew went through that.

    By Blogger Kassiane, at 3:39 PM  

  • What Kassiane said, on both/all counts.

    By Anonymous Tera, at 4:03 PM  

  • Thirded!!
    That line "(my daughter) does not have any areas of strengths that I fear squashing through medication, intervention or cure" is so offensive, how can she tell, she's still a child???
    And this:
    "autistic adults should be more understanding of the suffering of such parents."
    Maybe they should work towards a cure for that "suffering parent disease"
    I suggest ABA, apparently you can be doggy trained to act "normal":
    A cookie for the parent, who manages to show real compassion.
    People like Singer are a special case, though, aversives might help here: a skinshock for every parent that expresses a desire to kill their offspring, or sympathises with other parents, who have already done so.
    /end sarcasm.

    By Blogger Vogon Poet, at 5:09 PM  

  • This comment has been removed by the author.

    By Blogger jonathan, at 5:50 PM  

  • ... my sister was given two days' notice to remove him from the school. He had not been destructive or violent in any way, but the school apparently did not want to have any child with the scarlet "A" on its premises.

    Wow. Things have certainly changed since the time I was going to school. I was diagnosed young (age 5), but this didn't discourage my teachers from keeping me in mainstream classes (with an IEP, speech therapy and gifted classes). Obviously, mainstreaming isn't the answer for everyone, but this looks more like "Not in *MY* classroom!" than informed consideration of your nephew's needs.

    Not to take away from Autism Speaks's role in fomenting hysteria, but I think this particular instance of autism panic also fits with a broader trend towards simply barring people with mental illnesses/disabilities from educational institutions rather than risk trying to accommodate them and failing. Colleges in particular are starting to kick students out just for being mentally ill.

    My sister and I both became depressed while in college, and both sought treatment at our campus mental-health centers. I was referred to a community mental-health center and given an antidepressant and counseling, and she was hospitalized and kicked out of school. They have not let her back in.

    I blame paranoia about school shootings and the cynical reasoning that, as long as the student doesn't off him/herself on school property and thereby render the school liable, everything's jake.

    Am I bitter? Yes, absolutely.

    By Blogger Lindsay, at 6:23 PM  

  • Same thing happened to my son, but he never made it to the class. We told the pre-school in the application that he was autistic and we would supply a professional aide. But they didn't care, they said they weren't interested in having a disabled child because they already had one. I can't tell you how angry I was.

    Because it was a religious preschool, we had no recourse because the ADA doesn't apply to religious groups.

    By Anonymous Anonymous, at 7:12 PM  

  • "... they already had one."



    By Anonymous Anonymous, at 10:15 PM  

  • My son was also kicked out of preschool just days after receiving his Asperger's diagnosis, even though he had been in that same preschool the previous year without any problems. I was given the "we can't meet your child's needs" excuse, but what they really meant was "that kid isn't doing what the other kids are doing and it's annoying." Their completely uneducated advice was for me to send him to a special school for autistic children. As they say, a little knowledge is a dangerous thing.

    And that's where your post hits the nail on the head. If Autism Speaks wants to help ASD preschoolers, they should be showing preschool teachers how to accept these kids, not just how to identify them. I firmly believe ASD kids benefit from early identification, but the current craze of pointing out who's different so he can be taken away is appalling.

    It's starting to seem like there is less acceptance of difference today--despite all the "inclusion" sweet-talk--than there was twenty or thirty years ago. This may be a direct result of IDEA. Many public school teachers now look at their classes as a combination of "normal" kids and "autistic" or "ADHD" kids. Pre-IDEA, they saw the room as a bunch of different kids to be taught. Teachers certainly had their own ideas about who was "normal" and who wasn't, but before IDEA they had to keep it to themselves. Now it's something everybody talks about around a big IEP table!

    By Anonymous Anonymous, at 8:13 AM  

  • There is no question that medicalization of difference can work against us as well as for us. Why doesn't the ADA prevent this school, as a commercial provider of public accommodation, from discriminating like this?

    By Blogger VAB, at 1:26 PM  

  • @VAB

    Does the ADA have any effect on what private schools do? Preschools in the USA are mostly private and church-affiliated, which I thought meant they were free to discriminate.

    None of the private schools I've contacted will even meet with my son--they turn us down as soon as I tell them he has Asperger's Syndrome.

    By Anonymous Anonymous, at 2:45 PM  

  • I don't really know much about this stuff, but take a look at Title III of the act.
    And note that Public Accommodation, referred to in the Act specifically includes:
    (J) a nursery, elementary, secondary, undergraduate, or postgraduate private school, or other place of education;
    (K) a day care center, senior citizen center, homeless shelter, food bank, adoption agency, or other social service center establishment;

    If they are religious or part of a private club, that is different, but my understanding is that if they are in business for profit and open to the general public, then they do not have the right to exclude someone just because they have a disability.

    By Blogger VAB, at 6:18 PM  

  • We ran into this with preschools here. Joey went straight into the ECSE (public) preschool system, but Andy didn't qualify. However, with his sensory issues, no preschool wanted him. They just don't do special needs- and are not required to. We finally found a school that was willing to help as long as he wasn't violent. It's worked out great- but all those diversity posters we saw on the preschool walls everywhere else are a JOKE.

    By Blogger Joeymom, at 6:24 PM  

  • "They already had one" sent shivers down my spine for a very particular reason. I watched PBS documentary called "Inheritance" two days ago - to cut the long story short, Holocaust survivor described how the concentration camp commander picked her to work in his house and decided that her name from now on will be "Suzanna", not "Helen". See, he already had another "Helen" working in the house, he didn't need another one.

    Yes, it is very extreme comparison, but in both cases it still boils down to dehumanizing someone...

    By Anonymous Tara, at 6:59 PM  

  • @ VAB

    Almost all preschools (in our area at least) are run out of churches, which means they're private and not-for-profit. I believe this is how they get around ADA regulations.

    I do wonder about the private Montessori school telling me that kids with Asperger's are not admitted because they're too much of a pain in the classroom (that's a paraphrase). The tuition is over $30,000 a year at this place, so I assume it's a profitable enterprise. She asked me what my son's issues were, and when I told her "low tolerance for frustration" and "social and sensory sensitivites," she said, "I'm sorry, I don't think our school can accommodate your son at this time..." She told me that all the kids needed to work together without problems, so anyone with social struggles or personal space issues would not fit the program. She proceeded to tell me about three or four AS kids she'd taught previously, and how annoying they were.

    By Anonymous Anonymous, at 9:54 PM  

  • I have to say, I don't think Motessori is a good fit for most kids on the spectrum, it certainly would not have been for our guy.

    By Blogger VAB, at 10:04 PM  

  • I only contacted the Montessori school because my son is a superbrain (no joke) and we're afraid kindergarten next year is going to be a disaster. He does well in the classroom when he is being challenged, but when he is bored, he climbs the walls (literally). So I thought maybe Montessori would allow him to work above grade level. Turns out my impression of Montessori was all wrong--it's not the accepting hippie thing I thought, but more of an Ayn Rand deal.

    By Anonymous Anonymous, at 10:32 PM  

  • Thanks to all who commented. Your kind words are much appreciated!

    By Blogger abfh, at 2:41 PM  

  • Well, I always thought that Maria Montessori has to be spinning in her grave these days...

    If you have some time on your hands, do read her biography and original writings and compare them to 30k per year Montessori schools of today...

    By Anonymous Tara, at 4:33 PM  

  • This just confirms my belief that diagnosis and/or disclosure of autism should only be done as a last resort. The only type of diagnosis that one should be keen to inform a school about is intellectual giftedness (which can be ignored).

    Some recent letters to an Australian newspaper from angry parents of special needs and autistic children confirms that some Australian private schools are also rejecting these types of students. In 12 years time I hope they are wondering why they don't have those brilliant but quirky academic performers lifting their schools performance stats into the top end of the league tables. Today's exclusivity could well lead to tomorrow's mediocrity. When I transfered one of our kids to a better government school their old school's NAPLAN scores must have taken a sharp dive.

    Is anyone at all surprised that private schools don't want autistic students after all of the wholly negative hype about autism put out by the curebie camp, in addition to the consistently biased emphasis on the social deficit side of autism pushed by many so-called autism experts and many adult autistic writers? It is certainly NOT true that all young autistic children will be disruptive or misbehaving students in a properly run kindergarten or preschool programme. ALL children need to be given the message that they are expected to behave in a civilized manner, and ALL children need to know that higher standards of behaviour are expected of them at school and when they are outside of the family home. Even the best behaved and brightest kids can misbehave when their needs are not being met at school, and this type of neglect should not be allowed to happen.

    I always instinctively knew that my kids needed more thorough and close supervision than other young children, but in the long term these extra hours of supervision have paid off handsomley (at the risk of being labelled "a helicopter parent"). I've found that some early childhood ed teachers don't supervise closely enough and some are unable to handle the extra physical activity and the unusual needs of gifted/aspie young children. One simply looks around for a better kindy or school. The logical place to look will be a government school in an affluent, middle-class area.

    By Blogger Lili Marlene, at 9:47 PM  

  • You may want to listen to this news bulletin about Autism Speaks.


    By Anonymous Anonymous, at 2:01 AM  

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