Otto Rapihana of New Zealand, age 20, died in a fire after his caregiver locked him in a bathroom and left to get food. James Le Marquand, principal of the school Otto attended, said other students looked up to him as a leader:

"He was an icon here. He was a king. Whenever we had a really big welcoming for a special guest he would always be sitting in the middle, every time. He was that sort of kid.

"When I went around the classes with Otto's photo explaining what had happened, they all understood.

"Most of them can't speak but they picked up on the sombreness and just that sense of sadness. You could see it on their faces."

Rapihana came to the school's Glendene satellite class when he was five with severe autism.

His condition meant that he couldn't communicate with speech and he had challenging behavioural issues, Le Marquand said.

"But in many respects, his challenges helped define how the school worked to best meet the needs of the students.

"I don't think that he came to the school as a student, he came to us as a teacher."

This is the list of witnesses who have been invited to speak at the House Oversight and Government Reform Committee hearing on autism November 29:

Dr. Alan Guttmacher, National Institutes of Health
Dr. Coleen Boyle, Centers for Disease Control and Prevention
Mr. Bob Wright, Cofounder, Autism Speaks
Mr. Scott Badesch, President, Autism Society
Mr. Mark Blaxill, Board Member, Safe Minds
Dr. Rebecca Landa, Director, Center for Autism and Related Disorders

None of these people have autism.

Half of them have children or grandchildren who do.

The others are neurotypical experts.

And before I get proactive and encourage you to take action I want to clarify one thing:

This is why I am angry.

Policy about autism is usually written in the complete absence of autistic people.

The parent-based advocacy community seems to prefer this.

I'm not mad at parents because somebody wrote a blog post that hurt my feelings.

I'm mad because parents participate in this sort of discrimination.

This looks bad.

This looks very bad and I think it will have very negative consequences and I feel powerless to do anything about it:

The House Oversight and Government Reform Committee has scheduled a Nov. 29 hearing on the federal response to autism, its first in a decade. The panel, chaired by Rep. Darrell Issa (R-CA), will hear from panels of government experts, as well as advocates, including Autism Speaks Co-founder Bob Wright.

Apparently, no autistic people, or at least none from organizations headed by autistic people, will be testifying. I have requested a list of witnesses, but haven not gotten it yet. GRASP was not invited. Neither was ASAN. 

ASAN President Ari Ne'eman gave me this statement:

We're profoundly disappointed that the House Majority has once again decided to convene a hearing without the voices of the community impacted. Less than a year after the famous contraceptive hearing without women, the House Committee on Oversight and Government Reform will be convening a hearing on autism without any Autistic witnesses. ASAN condemns this kind of exclusion and urges the House leadership to include the voices of the organized Autistic self-advocate community.

Safe Minds, the anti-vaccine, anti-science, anti-public health group has been agitating for this for months:

Congressman Darrell Issa, Chair of the House Committee on Government Oversight and Reform, has promised a hearing on the problems with the Vaccine Court and at the CDC regarding autism/vaccine research. However, as of August 14th, the hearing still hasn’t been scheduled. We need to show him and the other committee members that the public is watching. It is time to get a date on the calendar. The hearing needs to be held before the end of September so that the election will not overshadow it. We want Congress to be paying attention!

Dr. Matthew Carey is worried, too:

The Committee held meetings 10 years ago which caused major harm to the autism communities. A platform was given for Andrew Wakefield (granted, his work was only questionable then but his ethical breaches were unknown) and the now disproved notion that the rise in the number of people diagnosed with autism was due to mercury in vaccines.

Much has happened in the past decade, but there’s a long way to go yet. The US government has a large effort on autism research, but more is needed. More effort on understanding the needs of adults, the broad spectrum of adults, for one thing. So many topics could use attention. The hearings of a decade ago helped to steer focus into unproductive areas. Let’s hope that doesn’t happen again. I’d like to do more than hope on that.

Karla Fisher is an autistic adult who mentors young people on the spectrum.  She shared with me this post from Tasia, whose son Nick is one of the kids Karla works with.

What she is saying is both important and difficult to understand.  Parents and teachers usually focus only on what happens immediately before a child acts out.  But, especially with an autistic kid, the actual causes of the behavior are likely to be ongoing issues that are making it hard to cope:

Example: Before we had his current IEP in place, Nick often had meltdowns after school (and in school, too). He would yell, call me names, throw things, and was becoming ever more violent. I saw this as bad behavior and issued consequences for it. He would argue and yell even more and we’d get locked in a spiral of me trying to make him stop and him just getting more angry.

I thought I understood what triggered his meltdowns but needed help stopping them. Karla informed me that the things I thought were triggers were happening way too late in the game and that I needed to look for root causes. I’d say he had a meltdown because I asked him if he had homework. After getting more details, she’d say no, he had a meltdown because he hasn’t gotten enough sleep this week and he’s not doing enough physical activity, on top of being overwhelmed every day by school. The homework question may have been the last straw, but it was not the root cause, and punishing him for not answering politely would not stop this meltdown or future ones.

Click here to watch on Vimeo.

Miguel Jiron illustrates the sensory overload that is often part of autism in this animated short. He created it for the Interacting with Autism Project and showed it at the Imagine Science Film Festival in New York this week. 

Via KUHF-FM.