Autism Society of America
Ruth Christ Sullivan knew that she was not a refrigerator mother. She knew that she had treated her autistic son Joe just the same way she had treated her four other children. What's more, she knew that Joe was smart and that he needed to attend school. She contacted Bernard Rimland after reading his 1964 book Infantile Autism: The Syndrome and Its Implication for a Neural Theory of Behavior, and they were both among the co-founders of the Autism Society of America in 1965.
Sullivan had to move to Huntington, West Virginia, in order to find a school that would take Joe. She is one of the reasons public schools in the United States cannot refuse students because of their disabilities:
Ruth Sullivan was one of the chief lobbyists for Public Law 94-142 (the Education of All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, or IDEA), which guaranteed a public education to all children in the United States. Before the passage of the law, individual school districts in most states were allowed to choose whether they were willing to educate a child with disabilities.
She also helped to introduce Temple Grandin to the world:
I first met Temple in the mid-1980s ...[at the] annual [ASA] conference.... Standing on the periphery of the group was a tall young woman who was obviously interested in the discussions. She seemed shy and pleasant, but mostly she just listened.... I learned her name was Temple Grandin... It wasn't until later in the week that I realized she was someone with autism....I approached her and asked if she'd be willing to speak at the next year's [ASA] conference. She agreed...The next year... Temple first addressed an [ASA] audience.... people were standing at least three deep....The audience couldn't get enough of her. Here, for the first time, was someone who could tell us from her own experience what it was like to be extremely sound sensitive ("like being tied to the rail and the train's coming")... She was asked many questions: "Why does my son do so much spinning?" "Why does he hold his hands to his ears? "Why doesn't he look at me?" She spoke from her own experience, and her insight was impressive. There were tears in more than one set of eyes that day.... Temple quickly became a much sought-after speaker in the autism community.
Ruth Sullivan was an advisor on the film Rain Main and her son Joe was one of the models for Dustin Hoffman's character in the film.
Cathy Pratt and the Autism Society of America offer eight tips to help autistic people enjoy the Fourth of July.
Here's my favorite:
Bright and loud, fireworks can be overwhelming for people with ASD. Provide him/her with a way to dampen the sound – headphones, for example. Note that not every person with ASD dislikes fireworks, but plan for the most difficult scenario.
Yesterday, the Autism Society of America issued a statement condemning the use of electrical shocks on patients at the Judge Rotenberg Center, and its founder Matthew Israel testified in his own defense in a lawsuit stemming from 31 of those shocks being given to one teenager in a single day.
Kim Wombles, who also got a statement from Autism Speaks opposing the practice, posted a statement from the ASA that reads, in part:
The Autism Society is distressed by a video shown in court this week that shows a young adult being restrained and shocked at the Judge Rotenberg Center (JRC), a facility for individuals with developmental disabilities in Canton, Massachusetts. The Autism Society does not support the use of electric shock therapy on any individual. Accounting for all we know about autism today, electric shock therapy is an archaic practice that should be obsolete. All individuals, no matter where they fall on the autism spectrum or how challenging their behaviors, deserve better from professional services.
In addition to Israel's testimony, which was expected to continue today, lawyers defending the JRC and its doctors tried to make the case that Cheryl McCollins' son Andre was actually being cared for as staff strapped him down and repeatedly shocked him:
A lawyer for defendant Robert von Heyn, who is now the director of clinical services at the Rotenberg Center, played the clips from the end of Andre McCollin’s day inside the classroom, asking von Heyn to point out where a pediatrician and staff members were checking on McCollins and giving him encouragement.
The Judge Rotenberg Center maintains that McCollins was dangerously aggressive that day and the shocks and restraint he received were part of his court-approved treatment plan.
A word from Jennifer Gonnerman about those "court-approved treatment plans" at the JRC: "the court rarely, if ever, bars the Rotenberg Center from adding shock to a student's treatment plan, according to lawyers and disability advocates who have tried to prevent it from doing so."
Autisable.com and The Autism Society of America are inviting people whose lives are affected by autism to submit videos and help change the discussion.
They suggest these ideas for your video:
- What has Autism taught you?
- What are you doing to help others understand Autism more?
- What have you done to overcome stress on dealing with Autism?
- What encouraging message would you share with other families in similar situations?
(if a lot of people just introduced themselves and said, "My son/daughter has Autism (or I have Autism) - It's going to be OK - you are NOT alone", we think that would be GREAT!)
- Share anything about Autism to help others understand
The Autism Society of America offers an "if you were offended" apology for their letter to the San Jose Mercury News exploiting the death of George Hodgins without mentioning his name:
Since the article was published, some individuals have questioned the Autism Society’s motives for not mentioning the victim of the story, George Hodgins, 22. We apologize if our letter offended anyone.
It was wrong of us to not mention Mr. Hodgins by name, but this in no way was intended to lessen the value of his life or justify the killing of an innocent individual.
I am not satisfied with this (please read the whole thing and decide for yourself.) I was very pleased, however, with a conversation I had yesterday with Scott Badesch, the president of the organization and one of the people who signed the original letter. The decision to make an apology was made before I talked to Mr. Badesch, by the way.
I would not call myself a supporter of the ASA at this time, but I'm not angry at them anymore, either.