First Autistic Presidential Appointee Speaks Out About Wanting More Technology Efforts to Help Those Afflicted with Autism
Posted Oct 09 2010 9:16pm
We always hear about the resistance to change and here’s one person calling for more technology for autism. Certainly he still backs research but is also calling for technology to kick in a bit and help out with speech challenges and augmentation to give patients a better quality of life. One large community opened their headquarters in Los Angeles earlier this year to help those with autism.
This is a nice interview from Wired and speaks about how some thought he was not up to do the job, but when you think about someone representing autism on the Council for Disabilities it makes sense to me. This is first hand experience that nobody wants, but none other can talk better about it. He speaks out on some items, like using an IPad that is not approved by Medicaid as having an impact and the ability to help those with autism. We have some old programs around and I have posted about them a couple of times about antiquated technology this is approved and is more expensive than what we have today out there, and on top of that it’s more expensive. Mr. Ne”eman wants to bring this to light and get up to the 21st century and have some of the more modern devices and software available.
Last year Kaiser Permanente received a grant from the NIH to study autism; $402,527 to extend an investigation of biologic markers for autism which was part of a huge grant program that totaled over $54 Million. BD
In December, he was nominated by President Obama to the National Council on Disability (NCD), a panel that advises the President and Congress on ways of reforming health care, schools, support services and employment policy to make society more equitable for people with all forms of disability.
In truth, Ne’eman was facilitating a different kind of coming-of-age ceremony. Beckoning a group of teenagers to walk through a gateway symbolizing their transition into adult life, he said, “I welcome you as members of the autistic community.” The setting was an annual gathering called Autreat , organized by an autistic self-help group called Autism Network International.
Ne’eman: If we put one-tenth of the money currently spent on looking for causes and cures into developing technologies that enable autistic people with speech challenges to communicate more easily — so-called augmentative and alternative communication [AAC] — we’d have a vast improvement in the quality of life for autistic people and their family members.
We’ve already seen some very promising tools for AAC and other assistive technologies start proliferating on the iPad and the iPhone. But Medicaid won’t pay for such dual-use devices, despite the fact that having an AAC app running on an iPad may be much cheaper and more functional than carrying around a dedicated AAC device. That should change, because AAC devices are currently too expensive and often not versatile enough to be used in a diverse set of circumstances.
As a society, our approach to autism is still primarily “How do we make autistic people behave more normally? How do we get them to increase eye contact and make small talk while suppressing hand-flapping and other stims?” The inventor of a well-known form of behavioral intervention for autism, Dr. Ivar Lovaas, who passed away recently, said that his goal was to make autistic kids indistinguishable from their peers. That goal has more to do with increasing the comfort of non-autistic people than with what autistic people really need