Creating a “Profound Autism” Category Is Segregation, Not Progress
by Shannon Rosa
All parents of autistic children struggle to give our children the lives they deserve, but we struggle in different ways because our children’s support needs vary so widely. I understand this complexity at a deeply personal level, as my autistic son requires full-time care—and I also get it professionally, as an editor and community manager at Thinking Person’s Guide to Autism, where a dizzying range of autistic experiences passes through our forums. Among other learned truisms, I can tell you that the recently proposed term “profound autism” is not very useful to parents like me, or autistic people like my son. What parents of high-support autistic kids like me need instead is more awareness of and connection with the other communities who understand our kids’ high-support traits, like the disability and non-speaking communities—in addition to the wider autistic community.
Have Faith In Your Children With Intellectual Disabilities
Friday, December 31, 2021
The October 2021 meeting of the Interagency Autism Coordinating Committee (IACC) featured some remarkable comments from its autistic members, including Sam Crane, Lindsey Nebeker, and Morénike Giwa Onaiwu—as well as public comments from ASAN’s Julia Bascom and our own editor Shannon Rosa, about the rights and needs of autistic people with intellectual and mental health disabilities. The transcript of the meeting was published only recently, and the entire document is worth your attention.
Even so, we’d like to draw your attention to the comments of Ivanova Smith, an autistic advocate with intellectual disability who is the parent of two small children as well as a a newly seated member of the IACC. Ivanova is passionate about the rights of people with intellectual disabilities (ID) to grow up and participate in their communities—and is a forceful, living example of how people with ID can thrive, given the right supports and understanding.
For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions
There are many therapies for autism, along with a significant amount of funding for research, development, and implementation of these therapies. However, it often remains unclear whether these therapies actually help autistic people. Autistic people rarely have a voice in creating and shaping these therapies, and there is very little ethical guidance for people who practice autism therapies that accounts for the needs, experiences, and perspectives of autistic people. Autistic people should have the ultimate say in what autism services focus on. ASAN’s white paper, “For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions,” aims to help close this gap.
The white paper discusses autistic peoples’ perspectives on the ethics and purpose of autism interventions. It explains the ethical problems at the heart of the most popular autism intervention, Applied Behavioral Analysis (ABA), as well as the lack of evidence to support ABA. And it examines how similar problems with both ethics and evidence can show up in other therapies. Finally, it gives initial ethical guidance on what’s helpful and harmful in autism services and research. …
HEARD: Supporting Black-Led, Disabled-Led, Cross-Disability Justice
I have spent a good part of my life concerned about autistic adults who are survivors of catastrophic encounters with our criminal justice system. People like Arnaldo Rios Soto, Neli Latson, and Darius McCollum. Neli Latson is finally free but paid a bitter cost for the crime of sitting in front of his local library. Deaf and disabled folks trapped within systems they should not have been part of in the first place have few options and precious little help unless their stories become part of our news cycle. I wanted to be part of any effort to help them. So a few months ago, I joined the board of HEARD, a Black-led and disabled-led, cross-disability abolitionist organization. With practically no funding, HEARD has been doing vital work that no one else does.
ASAN Statement on Updated Autism Diagnosis Numbers
December 2, 2021
Today, the Centers for Disease Control released the Autism and Developmental Disabilities, Monitoring (ADDM) Network report. This report estimates how many autistic 8 year olds there are in certain areas of the country. The report shows that better recognition of autism and continued efforts to reduce racial and gender disparities have caused rates of diagnosis to continue to rise. There is still more work to do to address the remaining disparities in diagnosis, and more work to do to ensure autistic people in all communities receive the support we need.
Foundations for Inclusive Advocacy
Fighting for Fairness: it starts with you!
Everyone should be able to access and learn from conversations about systemic discrimination. But information about these concepts isn’t always presented in an accessible way. Fighting for Fairness: it starts with you! is a first step to making these conversations accessible to all. We created it to support self-advocates with intellectual disabilities to participate in societal conversations about oppression and equity. This toolkit provides easy-to-understand explanations of societal discrimination and definitions of some words used to talk about different forms of oppression.
House Passes Largest-Ever Federal Investment in HCBS
November 19, 2021
This morning, the House passed the Build Back Better Act. This bill includes the largest-ever federal investment in home- and community-based services (HCBS) to date — $150 billion for better access to services, better pay for workers, and better quality services.