Three things have happened in the Autism world. Parenthood started airing on NBC last week. Last night was the second episode. The episodes are also available to watch online if you’re like me and don’t want to admit you’ve watched it. One of the three families has a son that was diagnosed with Asperger’s in the first episode. A lot of parents of Asperger’s kids said they really identified with the parents. What became apparent was that Asperger’s children are still seen as not having acceptable ‘behaviors’ to stay in their placement. The boy was being kicked out of a private school in the same episode. Just another place where Asperger’s is not accepted and accommodated.
—
Next up is the character known as Michael E Robinson, Jr. (link to original article) He is an acquaintance and all of his ‘facts’ are what he professes to be true. As you take a look at the article, the fact checking shows that most if not all his facts to be false. He has great zeal and passion about what he’s doing. The problem is, he has been alleged to have scammed money from parents, taking others work as his own, and tends to over-embellish his abilities. His numerous claims identifying him as an ally to the Neurodiversity community are false.
It does leave the question, why would he do such things?
—
Lastly, Autism Speaks has nominated John Elder Robison to their Scientific Advisory Board. J.E. Robison is most famous for writing the memoir Look Me In The Eye: My Life with Asperger’s. On the surface, this looks promising. Autism Speaks is finally accepting a person with an Autism Spectrum Disorder into their community.
But what looks good on the surface is not so widely accepted by the Neurodiversity community at large. Mr. Robison states in his acceptance:
Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.
While he sees remediation as a goal, the troubling part is that he wants to still research in causation. The subject has been rehashed again and again. The only true reason to research causation is to find a cure. A cure many do not want for themselves.
To go on, this is just one appointment. The Scientific Advisory Committee has 30 members. He can make an impact in the committee. Perhaps another 5% of research grants will go to Quality of Life research. This does not help their Awareness campaigns that show Autistics to be trapped and hopeless. They do not preach Acceptance. If they did, more than just one Autistic person would have been nominated. They continue to take desperately needed donations out of the communities. What little they do for the Adult Autistic community is hold online “townhalls” that cost $100s to get into which circumvents most Autistic Adults attendance!
This is very displeasing to many. To try to work from within is a noble cause, Mr. John Elder Robison, but the naivety that just one man can change the whole of a community so rooted in fear, anger, deceit and hate could be damaging for us all.
Tags





The Importance of Advocacy!
Written in 23-5-2009 by Melody | No Comments
With our move, I have come to realize one big truth about myself. I must advocate for my children and myself. While I still know people that live in the Dallas area, I am required to open myself up to more than those people. So far, I have been quite lucky with those that I’ve met.
School professionals? They have congratulated me on my knowledge, order and preparation. They like the initiative I’m taking to learn about my children’s education. All around, it has been an excellent experience. They are all quite aware that I have Asperger’s and have concluded that both boys do indeed qualify for an IEP under the diagnosis of Autism.
Rehabilitative professionals? They also have noticed my keen knowledge of the boys. Surprisingly, I have learned that most parents don’t get to know the ins and outs of their children like I have. I’m not sure why, but it comes natural for me to learn every aspect and keep up to date. There was no shock this week when my oldest, now 5, was evaluated at below a 3 year old level, and no shock that my youngest, now 4, was evaluated at about a 3 1/2 year old level. We have come to grips with this and do what we can do push them further. And once again, I have let them know that I have Asperger’s.
I have now come to my roadblock when it comes to success with advocacy. I am now trying to become part of a local mom’s group. Armed with my relatively new diagnosis of Asperger’s Syndrome, I am doing what I can to advocate. I make sure to let people know about Autism Spectrum Disorders. I make them aware that my children are delayed for their age. What I seem to keep forgetting is advocating for myself. So today, I ran into my roadblock from opening my proverbial mouth. On the message board for this group, I chose words unwisely. I upset someone unintentionally. But I took that moment to explain myself when I had the opportunity. I invited the person to read more about social deficits with those Asperger’s people.
I usually don’t upset others, but I do know I make rude comments at times. This is not about making excuses though. This is a time for learning as well. Both from my side, on learning that certain comments are better left unsaid, and from the other side, that sometimes people don’t always intend to be mean.