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Thank you Lois Curtis

Today Lois Curtis passed away. She along with Elaine Wilson were the plaintiffs in the landmark 1999 Olmstead v. L.C case, which jumpstarted de-segregation and de-institutionalization of the disabled. It paved the way for community based supports for the disabled. 

Over the summer I also had the opportunity to be part of a White House panel discussion on the occasion of the anniversary of the Olmstead Act. The Olmstead Act is more significant than we can even think. Imagine, just a few decades ago, people with more significant disabilities (which would have included "higher-support" autistics like me) were simply put into institutions. 

Problem solved for society with the disabled tucked out of sight!! Case closed!! 

In fact, when I was young, families were still being advised to send their autistic child away before they grew too attached to that child. 

Folks like Lois did not get to choose. She had to fight to get out of an institution. 

What if you did not even have a "voice" (like many "higher-support" autistics) to protest even as your family was told that this was what was "best" for you by all the "well-meaning" professionals. 

Thank you Lois for speaking up. 

As a child I don't think I quite understood what institutions were. The closest I came to seeing a visual was was whatever was shown briefly in the movie, Rainman. 

It was not until I got into college and began my Disability Studies courses, that I began to understand how horrifying institutions and the idea of institutionalization was for the disabled. My very first disability studies course had been with Victor Pineda. 

On the very first day of class he screened a documentary called "Lives Worth Living" on the disability rights movement. One of the most shocking and horrifying scenes in that documentary had been Willowbrook, one such institution in New York housing the disabled. It showed the disabled children living in degrading and filthy conditions. The doctors at Willowbrook themselves had grown so alarmed that they had invited reporter Geraldo Rivera's to do an expose which shocked the world. 

I used to think my low expectation special education classrooms were degrading enough, but I shudder to think of what living in those inhumane institutions would have been like. In fact, in the 2020 documentary Crip Camp, there is a mention of a camper from Willowbrook "who would stuff himself with food till he got sick" as he would not get adequate food at Willowbrook. 

Such history makes the Olmstead Act all that more significant, and meaningful to folks like me. 

"The Olmstead decision has led the government to make more opportunities for people with disabilities to get services outside of institutions. Advocates and the government use the Olmstead decision to fight for disabled students’ rights to learn in the same classroom as non-disabled students. Advocates and the government use Olmstead to fight for disabled workers’ rights to work in the same workplace as non-disabled workers, and earn a competitive wage." (ASAN Remembers Lois Curtis)

Though we still have miles to go on disability rights on multiple fronts, I am so deeply appreciative of such disability rights icons who have hewn out the path that many of us now almost take for granted. 

Thank you Lois 



Understanding Neuroception and Its Importance in Autism

PlainSpeak. In Plain Language for the Lay Reader

Have you ever walked into a room and immediately felt comfortable or, conversely, felt uneasy for no apparent reason? This instinctive response is part of what's called "neuroception." Neuroception is a term coined by Dr. Stephen Porges that describes how our brain and nervous system unconsciously scan our environment to assess whether we are safe, in danger, or facing a life-threatening situation. This process is crucial because it helps us decide how to react, even before we're fully aware of what's happening.

For people with autism, neuroception can work a bit differently. Many autistic individuals have heightened sensitivity to sensory experiences, such as bright lights, loud sounds, or crowded spaces. Because of this heightened sensitivity, their nervous system might misinterpret these benign environments as dangerous or threatening, leading to feelings of anxiety or discomfort. This is why you might notice some autistic people avoiding certain places or situations—they are simply responding to what their body perceives as a threat. This reaction is sometimes linked to a phenomenon called "hostile attribution bias," where individuals are more likely to interpret ambiguous situations as having hostile intent. 

Imagine someone accidentally bumps into you. While many might see it as an accident, someone with hostile attribution bias might think it was done on purpose. In autism, this bias can be heightened due to the unique challenges autistic people face, such as difficulties in interpreting social cues or a history of negative social experiences like bullying or exclusion. These experiences can make it harder for them to trust others and more likely to perceive interactions as threatening.

Understanding both neuroception and its link to hostile attribution bias is essential because it helps explain why some autistic individuals might find everyday situations challenging. It also highlights the importance of creating environments that feel safe and comfortable for everyone, especially those with sensory sensitivities. By being aware of these needs, we can help reduce stress and improve the well-being of autistic individuals.

Halloween is my least favorite holiday





Halloween is my least favorite holiday. 

Why? 

It's a painful reminder of EXCLUSION, and not memories of joy. 

After usually avoiding/excluding kids like me for 364 days, the very same neighborhood kids & parents stood at my doorstep, arms outstretched demanding I give them candy. 

The irony!!