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Autism Vox

Since April is coming soon………….

by Kristina Chew, PhD on March 16th, 2007

Are you planning to do anything for autism awareness month in April?

I brought this up with Charlie’s school today; some seem to feel that making a big deal out of it—by putting together a bulletin board or providing informational brochures or some such—-might not be a good idea due to the “stigma” (of what, I am not quite sure).

I am looking further into the matter.

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livsparents
Mar 16, 2007 at 7:13 pm

Awww man! I forgot to order my COSAC Autism Awareness packets this year for me and the kids. The usually put something together for parents and siblings of ASD kids. I wonder if I can still get it in time…
Bill
Caroline
Mar 16, 2007 at 7:37 pm

Hi Kristina,

-was it the teachers in Charlie’s excellent classroom who said this?
-Is there a good connection between the faculty in his program and the other ‘mainstream’ teachers and the principal?
-How do the mainstream teachers treat and react to the children with autism in their school?
are the kids segregated until ’successful’? are they greeted and treated kindly by mainstream teachers in the halls? or ignored?

perhaps they could do some educational flyers and talks on how children with autism and other communication and sensory disorders are children first, and they have extra challenges to navigate in school and they are kids with thoughts and feelings like any other.

There has been such a shift away from the accepting ‘free to be you and me’ thinking of years ago. Society seems to be getting less tolerant.

anyway whatever the teachers are doing in Charlie’s room it all sounds wonderful and I wish they could pass along their methods somehow.
Julia
Mar 16, 2007 at 8:39 pm

Hm. I could send out an e-mail to a mailing list of mothers mentioning it at the beginning of the month.

(If I got some sort of reminder on that, maybe on a blog entry or something, that would make it more likely to happen!)
Daisy
Mar 16, 2007 at 9:08 pm

I could see my school putting together at least a bulletin board. I think I’ll talk to a couple of my special ed. co-workers. heck, with four (yes four) teachers in my building having kids with autism or Aspergers, we could probably do more.
Kristina Chew, PhD
Mar 16, 2007 at 9:23 pm

It wasn’t Charlie’s teacher who brought this up — she went out of her way to do presentations on autism for each grade level.
Marcie
Mar 16, 2007 at 10:08 pm

The head of our local (parent-run) autism group said she would contact one of the local news stations for the awareness month. She asked me if I would consider being interviewed. I still don’t know if we’ll get any time on the air, but I consider it to be an honor to do it if I can, as I’ve made it known that I don’t always agree with other people on everything concerning autism.
Kristina Chew, PhD
Mar 16, 2007 at 11:06 pm

Charlie’s autism classroom is new to the school. The kids are regularly seen on walks, attend all assemblies and make regular visits to the school office, and there are some other special ed classrooms. But the autism program is new to the building and I think it is more specialized (and probably has a higher teacher:student ratio) than the other special ed programs. I’m also wondering if the thought might be that if there is autism awarenress month, someting also needs to be done for awareness for sensory processing etc..

I’m feeling even more interested to “say something” about autism due to those recent CDC statistics. Who knows what other people—-especially if they don’t have an autistic child—might be saying about why NJ’s prevalence rate is so much higher than in the rest of the country?
Jennifer
Mar 17, 2007 at 7:28 pm

The school where I teach recently did an ability awareness assembly, which I thought was a great idea. My main concern was that the other kids (as well as teachers and adults) not come away from it with an attitude of “oh, those poor kids.” I wanted them to understand some of the challenges my students face, but I also didn’t want it to be a “look how hard life is for kids with ____” pity party either.

(As it turned out, the folks that organized it did a rather poor job, and I doubt it really impacted the kids in either way, unfortunately.)

Could it be, I wonder, if the person who was worried about ’stigma’ was concerned that an overly negative picture of autism would be painted, rather than a balanced one?
caroline
Mar 17, 2007 at 10:08 pm

Hi Jennifer and Kristina,

I am responding to this because I know that the stigma against people who present as unusual is very real.

The title “ability awareness” sounds so cool , I am sorry that it was not able to be presented effectively.

It sounds more like the person at the school in question who mentioned ’stigma’ might be someone who has to think about the school in general - e.g., what might the parents and taxpayers who do not have children with autism think about when highlighting the new classroom and resources?
And this gets into personal territory for K.

Is the New Jersey public school system promoting inclusion and acceptance for all? I do not live in N.J. while all the ’services’ sound great - is inclusion factored in? “awareness” is never enough, acceptance and empathy is what is needed everywhere.
Kristina Chew, PhD
Mar 17, 2007 at 11:19 pm

“Ability awareness”—an idea to think about…..

I do think the person who was concerned about “stigma” was thinking about the other parents and taxpayers. There are budget cuts going on (though my district has many resources to draw on). Charlie’s room is not 1:1—-there are 6 children, 6 aides, and a teacher. They have a large room and all kinds of resources; the teacher does regular home visits. It’s a pretty extensive operation—-and I can definitely imagine parents whose children are not special ed, or not in the autism program, not happy to see cuts in extra-curricularsm full-day kindergarten, etc., and hear about 6 kids getting all that. We’re always fighting over a pie of limited size…..

Inclusion is lower in NJ than in other states. Some point to the higher number of special ed private schools as a reason—and to counties building separate schools for special ed, rather than housing a program within district as my town has for Charlie.
caroline
Mar 18, 2007 at 9:12 am

That is one of the reasons why we did not move to NJ - the ’services’ for children with ASD were there without horrific legal battles, but I heard from parents that a child had to be very ‘high functioning’ - very verbal and able to perform well on standardized tests in order to spend time with ‘typical kids’. I did not want to have to fight legal battles and pay the huge tuitions at the private schools. (so far beyond a regular private school) That alone can destroy a family.

Inclusion with the right supports may be a tall order, but surely having a program in district is less expensive than paying for all the out of district private tuitions and legal battles?
Phil Schwarz
Mar 19, 2007 at 12:53 am

Jeremy’s high school had a school-wide Diversity Week, the week after February school vacation. This year, the teaching staff of Jeremy’s program got involved, with the goal of representing disability as a form of diversity.

Several kids spoke — some, like Jeremy, read a single paragraph they’d written; one Aspie student (who’d been interviewed on our local PBS station (WGBH’s “Greater Boston” with Emily Rooney) after the tragedy at Lincoln-Sudbury High School) gave a longer speech.

And I was asked to speak, as a parent, an adult on the spectrum, and a representative of a local autism organization (the Asperger’s Association of New England).

I did a 15-minute high-school-level “Social Model of Disability 101″ tutorial — and showed why it is the case that if we are going to declare disability a form of diversity, and not make it a lesser, orphaned form of disability, it follows that we must adopt the Social Model of Disability.

A propos April as Autism Awareness Month: a favorite essay of mine on the topic is this one, by the U. of Wisconsin experimental psychologist Morton Ann Gernsbacher, who has a nonverbal (but *very* aware) son about Charlie’s age:
http://www.autistics.org/library/acceptance.html
Kristina Chew, PhD
Mar 19, 2007 at 1:42 am

From Dr. Gernsbacher’s essay:

What if next year we celebrate the diversity of social interaction observed within and across all cultures? What if this “awareness” month marked a time to appreciate the variation that all humans demonstrate in their style and competence in communication? What if it heralded an era during which we marveled at the determined focus that in my occupation often wins indefinite tenure but in a precocious child gets labeled as diseased?

Thanks, Phil.
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