Last Week’s Top Posts: Awareness Month Ends and an Award
Autism Awareness Month 2008 ended Wednesday; here in my state of New Jersey, Senator Robert Menendez marked the closing of the month by unveiling the Helpings HANDS for Autism Act. The act calls for the creation of “autism navigators” to assist families in figuring out services; training for law enforcement and other primary responders; and the creation of a Task Force to address the “serious lack of sufficient housing” for autistic adults.
A recent report about an autistic man in Utah, Eric Hale, who died in a group home and was found weighing 100 pounds and in a fetal position and, from the report of a friend, with a “‘punctured bowel [and] vomiting feces,’” more than underscores the need not only for housing for autistic adults, but for highly trained and supervised staff.
Autism Speaks co-founders Bob and Suzanne Wright are on Time Magazine’s 2008 list of the most influential people, in the category of “Heroes and Pioneers”:
They successfully pressed Congress to allocate more research money. They convened the best experts in the field. They raised millions of dollars from their friends at events across the U.S. And they successfully lobbied the United Nations to place autism on the global health agenda.
For those of us who have known Bob and Suzanne for a long time, none of this came as a surprise. The products of modest beginnings, they have never taken their good fortune for granted. In their devotion to family and their faith, they always ask, “How can we help?” When it comes to autism, they won’t quit until we have some answers.
As the Wrights’ grandson—like my son and so many other autistic children today—grow older, I’m hoping that Autism Speaks can address these pressing issues of housing and long-term care across the lifespan of autistic adults. To quote Executive Vice-President of Programs and Services, Peter Bell, “our children deserve a better quality of life”—yes, indeed, for their whole lives.
- Hope Starts With Acceptance
Does one strive to do everything one can to cure, heal, recover a child from autism with the goal of the child “losing” her or his diagnosis? Or, does one learn to accept that one’s child is different, disabled, autistic? - In Search of Another Hidden Horde, Autistic Children with Mito?
Is mercury in retrograde—is it falling by the wayside, and being replaced by “mitochondrial disorder”—as the cause of autism just as “bad mothering” has? - Working Mother
It was a few months ago that another working mother (with a grown-up son) gave me a very important piece of advice…….“Kristina,” she said, “everyone has something. You just don’t know what everyone has.” - The Open Wallet Policy
When does a parent know when to stop having the “open-wallet policy” about spending on treatments for a child’s disability? - Autism Info Vacuum?
Sometimes I feel that, when it comes to autism these days, it’s a climate of feast and famine—of knowing more than has ever been known about autism, and still not feeling as if one knows anything. - On Autism Detox
“Detoxifying” a child’s body of “heavy metals” via chelation is an alternative, and not uncontroversial, treatment for autism. - Special Care Dentistry
Teeth-brushing has been a skill on Charlie’s IEP for the past three years—-prior to that, I brushed his teeth or, rather, worked on teaching him to open his mouth and to tolerate having a piece of plastic and wiry bristles on his tongue and teeth. - The Case of Hannah Poling: The question of disclosure
On April 11th, a new document in the case of Hannah Poling was filed, Order Deferring Ruling on Petitioners’ Motion for Complete Transparency of Proceedings. - At Least 72 Measles Cases in the US
The biggest measles outbreak—72 cases so far—since 2001 is occurring across the US. - Where Where Where?
Where to live to get the best possible services for an autistic child?
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POSTED IN: Adulthood, Education, Health, Legal Issues, Legislation, Living Arrangements, Media, New Jersey, Science, Vaccines
4 opinions for Last Week’s Top Posts: Awareness Month Ends and an Award
Harold L Doherty
May 3, 2008 at 3:03 pm
“As the Wrights’ grandson—like my son and so many other autistic children today—grow older, I’m hoping that Autism Speaks can address these pressing issues of housing and long-term care across the lifespan of autistic adults. To quote Executive Vice-President of Programs and Services, Peter Bell, “our children deserve a better quality of life”—yes, indeed, for their whole lives.”
My son is 12 with Autistic Disorder, assessed with profound developmental delays. He will need residential care in a secure environment as an adult. As an autism advocate here in NB over the last 10 years I was one of a group of parents who fought hard for pre-school intervention, funded by government and provided by quality autism specific trained personnel. Most of our children including my son did not benefit directly from those efforts. I do not begrudge the autistic children who have benefited from our efforts.
My son has benefited from ABA based instruction in our schools over the last 4 years in modified learning environments some outside the classroom and others in locations with other students. We had to fight to secure those services as well. In doing so we were able to use the training programs established here in New Brunswick (Canada) for the pre-schoolers to train the teacher assistants, resource teachers and autism consultants who now provide autism specific education to our children.
Now we are fighting for decent adult residential care for adults with autism. Again we forsee training staff for the adult facilities using the existing programs and personnel put in place for earlier years.
I do not begrudge the Wrights or Autism Speaks for their focus. I do not understand why you demean their efforts to help autistic children. The more children they help now the fewer will need the same level of adult services later.
The Wrights and Autism Speaks have raised autism awareness literally around the world. Amongst other accomplishments they were central to the recent declaration of a World Autism Awareness Day. If you feel the need to belittle them feel free to continue. But you might also consider becoming an advocate for adult autistic services yourself beyond echoing Neurodiversity ideology from the Autism Hub.
xtiluv
May 3, 2008 at 7:23 pm
Hey Kristina,
I just wanted to take a moment to thank you for all the wonderful information you provide here on your blog.
I am always inspired and informed by you and your readers. It’s obvious that with all of us having such different levels of need, our viewpoints on what is important can vary greatly. However, you provide such a wonderful forum for intelligent discussion and allow so many people to express their personal concerns, that I always leave your site feeling better educated and more thoughtful.
Thank you and everyone else here for all you do. I know that it is very important to the future of our families to keep the lines of communication open…especially in terms of difficult and controversial subject matter.
I am constantly impressed with the obvious intelligence of yourself and your audience, regardless of any of our abilities to come to a place of agreement. Thank you for elevating the conversation.
I know that your blog has been instrumental in moving me past a point of grief and fear to a point of acceptance and action. It would have happened anyway, but you definitely accelerated the process with your healthy and hopeful attitude.
Thank you.
Kristina Chew, PhD
May 3, 2008 at 8:11 pm
@Harold Doherty,
You read a lot into my posts; thank you for your readership. I have met Peter Bell and am looking forward to further conversations with him, especially as he is, like us, a resident of New Jersey.
@xtiluv,
just thank you—-hope I ca keep on making a contribution!
Autismville
May 4, 2008 at 7:20 am
Many of the leadership at Autism Speaks are parents of children with autism, including Peter Bell. The newly created Family Services branch of AS, which Mr. Bell oversees, is working to meet the needs of families here and now.
Mr. Bell also oversees the Government Relations branch of AS, under the leadership of Elizabeth Emken. (Ms. Emken is also the parent of a teenager with autism.) AS played a key role in the creation of the Expanding the Promise for Individuals with Autism Act, which is sponsored by Senator Hillary Clinton. This act would provide services across the lifespan of individuals with autism. AS is devoted to the passage and subsequent funding of this legislation. To learn more about their legislative efforts, you can visit http://autismvotes.org/default.html
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