Research | NOS Magazine

A new wristband may give autistic people and our caregivers warning that a meltdown is coming up to three minutes before they happen. A version of the wristband is already FDA approved and on the market to help detect seizures. Dr. Rosalind Picard of MIT presented the results on Friday at the 2018 International Society for Autism Research annual meeting in Rotterdam, the Netherlands. During her keynote, Dr. Picard emphasized the importance of looking beyond neurotypical facial expressions and cues to determine how autistic people feel. Dr. Picard began her keynote by stressing the importance of autistic feedback in her work. She recalled an autistic friend's observation that “my biggest problem is not understanding the emotions of others. My biggest problem is you are not understanding my emotions.” Alexithymia, or difficulty understanding how one feels, is a common problem in the autistic community. This can often lead to situations in which someone does not notice … Continue Reading ››

Note: This post contains medical language and discussion of early death. Are many young adults with autism dying preventable deaths because they and their families are unaware of Ehlers-Danlos syndrome? When I was a member of the Interagency Autism Coordinating Committee (IACC), I commented when representatives from Autistica UK presented on early death for adults with autism. They didn’t mention Ehlers-Danlos syndrome. I talked about Ehlers-Danlos, my son, and the fear that no one is researching or talking about this. I hadn’t heard anyone previously, and I haven’t seen anything on the topic since. That’s a problem. It’s especially a problem for me and my son. My son was a serious baby. He was a bit floppy, delayed in crawling, sitting, and walking. He learned to do all three before he was 14 months old. What he did not do was speak. After several rounds of diagnostic testing, he was diagnosed … Continue Reading ››

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New Wearable Detects Meltdowns Before They Happen

We Need Research on Ehlers-Danlos Syndrome