Interagency Autism Coordinating Committee (IACC)

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Hello all. My name is Wolf. I have been invited by the Interagency Autism Coordinating Committee (IACC) to participate in one of the public forums they are having in Washington DC. I would like to know what pressing issues associated with autism treatment, research and support would you like to have addressed at this meeting. I would like to hear what things you in the autism spectrum - aspie communities think I should bring to peoples attentions during the workshops.

This is your chance to give me your insights in how to best impact these Interagency Autism Coordinating Committee (IACC) meetings in positive proactive ways. I listed all of the elements I could think of in a poll on this page. Please take a moment and fill out this poll. I will be going to Washington DC armed with any insight you share with me. Thank you from Wolf.

Hi Alphawolf

I wasn't sure what to say on the poll but my daughter is a proundly autistic adult and my son has high functioning autism. I have a lot to say about how we found success with my son but I have more to say about my daughter.

When she was little, it seemed that the only times parents go together and bonded, looking for solutions was whenever there was a cure presenter or a cure conference. NOTHING could get those parents to focus on the reality that their autistic children were going up and were going to need serious help planing for decent lives.

So when the kids grew up, the cure parents usually ended up pretty reclusive with their uncured kids and few social connections. I try to get the cure people to make presentations that encourage the parents to accept whatever and whoever their kids are and to strongly discourage the parents from latching on to the word "cure" so that they can live in denial. The cure people don't seem to care about the kids, just the cure.

So now I'm looking at getting too old to care for my daughter who will be in a foster home and freaked out because nobody can understand her so for her health and safety they'll have to drug her until she is safely zombielike, for her own good, of course.

Except, I'll be working for the rest of my life to see that this won't be her future.

Since the cure conferences, sites and presentations seem to get all the bells and whistles about autism, they owe it to the autistic kids to not take away their hope for good lives but the cure people would rather keep the parents huddled together living in Denial Land.

[quote="OregonBecky"]Hi Alphawolf

When she was little, it seemed that the only times parents go together and bonded, looking for solutions was whenever there was a cure presenter or a cure conference. NOTHING could get those parents to focus on the reality that their autistic children were going up and were going to need serious help planing for decent lives.

I agree with the statement about the acceptance. I have a 13 y.o girl with AS. Her life is terrible in the public school, just because her condition is not recognized.
So, for us I think the major question is public school stuff education and suppot by school for children with AS.
It would be wonderful if it is not considered a disability by the school staff, but rather a personality who is touchy and in need of support.

PUBLIC SCHOOL STAFF EDUCATION ! !! !

StrangeGirl, you're right about the schools, except they don't get it. That's why I never think to have hope for schools. We used to try to explain and show them what we now is obvious but it's like school employees' brains are hard wired and atuck no matter how reaosnable it is to accept spectrum people for who they are and let them learn on their own terms.

Since your daughter is younger than my kids, I sincerely hope that you can help them change. The world would be so much better if they opened up to what spectrum people have to offer.

I am a teacher in a public school. I teach special ed, particularly spectrum kids. I am also an Aspie.

Public schools - right now - are driven by no child left behind. So, right now, all they care about are those test scores and how they are going to get the scores they need.

They do NOT CARE about ANYTHING except the course they have chosen (right or wrong) to reach those test score goals. And if the teachers don't march right along (God forbid anyone actually IN a classroom know anything), they'll be replaced.

And, with budget crunches, they are trying to keep kids OUT of special ed (in direct contradiction to IDEA). All that money that you're told gets spent on special ed? It does NOT hit the classroom.

Aspie kids present as normal enough, just a bit weird - so no one wants to qualify them. They get stuck in a gen. ed. classroom with 30 other kids and all the accompanying stimuli. If there were just a place they could go to take a break!! Note: Recess is NOT a break! That alone would make a huge difference..... Instead, we've got admin telling us to teach them like they are NT, and coming down on us (me, in particular) because they refuse to act NT.

And the general ed teachers have these kids, and don't have a clue what to do with them.... and as the sensory needs mount, and the meltdown become more common - the kids get labeled as "behavior problems" when, in reality, they have been set up to fail.

So much for early intervention.

Aspie kids need SMALL classrooms, frequent sensory breaks, and the freedom to study what they find interesting (as a key to get them to learn other things they'll need later).

Public schools are a nightmare.

Well said! And about what yuo said about freedom to study -- my son re-entered high school after we had taken out of junior high (he could take only so much torture) at age 17, They said he would age out without enough credits to graduiate so he took the classes he liked and really excelled but on his terms. He was scared of doing to deals like portfolio projects that counted as half your grades or a lot of busy homework, He spent his time in high school learning to understand himself. The teachers weren't pressured because if he failed it didn't count against them. The teachers enjoyed having him in class. He usually was at the top and did the highest sciences and math offerred by the school and got A's on all the tests. I think that if teachers weren't so pressured to jump those all those ritualistic administrative hoops, they'd enjoy a spectrum of learning abilities. They felt free to just follow their teaching instincts and hearts with my son and probably remembered why they had originally wanted to be teachers.

So now he's in his first year at a community college. He loves it and is getting A's. They never asked if he had a diploma.

We broke all the rules with my son and it was the only way that we found success.

[quote="OregonBecky"... -- my son re-entered high school after we had taken out of junior high (he could take only so much torture) at age 17, ....[/quote]

Good for you! The very best thing, sometimes, is to get them OUT of a bad situation. Two of my students from last year are being homeschooled this year. I miss them, but I couldn't "save" them from the social stuff and NCLB - homeschool is right for them this year.