Evaluating autism information is tricky, especially on the Internet. How can we differentiate between helpful and harmful information? Why is questionable autism information dangerous? And why is it that autistic people’s perspectives are so crucial to understanding autism? These questions were the crux of a workshop I gave last weekend, at the annual Support for Families of Children With Disabilities resource fair in San Francisco, on How to Find Autism Information That Will Help You. (I also moderated the workshop on Supporting Autistic People Through Meltdowns, Aggression, and SIBs by Dr. Clarissa Kripke, Brent White, and Lindsey Anderson.) Since I am a chronic worrier, I thought only a handful would show up. But the session was full, and people had lots of questions—plus many really wanted a record of the talk. So, here are the topics I covered, and please let me know if you have any questions.
How to Find Autism Information That Will Help You
Main takeaway: You, your students, and your child deserve to lead good lives. If you heed bad autism information, you will never learn what autistic people actually need and deserve, and everyone involved will miss the opportunity to achieve the best lives possible.
My Background, and Workshop Goals
- I am the senior editor and co-founder of Thinking Person’s Guide to Autism: A website, book, and community of parents, autistic people, and professionals.
- Please learn from my mistakes, so you don’t make the same ones.
- You need to find tools that will help you and/or your family live the lives you all deserve.
- It’s ok and necessary to acknowledge when things are hard, and why.
Good Autism Info Matters
- Our society is unfriendly to autistic people. This is unfair. This is why we’re here today.
- Historical and cultural understanding and acceptance of autism vary. But in the U.S., information is often flawed or wrong.
- Autism is mostly inherited. Many parents are undiagnosed, or have some autistic traits. So, remember self-compassion.
- Critical thinking skills help, a lot.
- Person-First versus Identity-First language
- “Person with autism” vs. “autistic”: respect the language people use for themselves, also be mindful of when its appropriate to derail important discussions because of language.
- Functioning labels: Not useful
- Why “high functioning” and “low functioning” don’t mean anything
- Medical model vs. social model
- Autism is neurodiversity and disability, not disease
What Is an “Autism Expert”?
- Who do you trust, if you’re new to autism?
- Autism professionals: Have experience with populations. But not necessarily a true understanding of autistic experience.
- Autistic people: Lived experience. Valuable if your loved one/client/student is non-speaking, and/or you are newly diagnosed.
What to look for: Acceptance
- Presumption of competence (this is the opposite of denying intellectual disability)
- No “magic window” for providing supports
- Recognition of autistic people’s humanity, avoiding “burden speak”
- Understanding of, and respect for, diverse autistic experiences, including why “normalization” is not a useful goal
What to look for: Legitimacy
- How do you identify bad information? From science journalist Emily Willingham:
- Is this practitioner or vendor promising miracles that no one else seems to achieve?
- Is the person also asking for money?
- Does scientific research support their claims, or are there only individual (often emotional) testimonials?
- Does the approach aim to help, or to control?
- Whose interests does the approach serve?
What to look for: Education
- Understanding that autistic learning styles and needs vary greatly
- Absolute willingness to accommodate autistic students’ disability-related needs
- Presumption of competence: Curriculum, communication, complexity of needs
- Experience coupled with empathy
(This is not, by any means, a comprehensive list.)
- Policy and Advocacy: Wright’s Law, UCSF Office of Developmental Primary Care, The Autistic Self Advocacy Network, The Arc
- Autistic Experiences: NOS Magazine, Autism Women’s Network, AutChat, Invisible Strings, Unstrange Mind
- Research: Emily Willingham at Forbes, Left Brain/Right Brain, Spectrum News
- General: Real Social Skills, Ollibean, @SteveSilberman and NeuroTribes, Thinking Person’s Guide
- Parenting: Respectfully Connected, Diary of a Mom
(Also not a comprehensive list; try to use what you’ve learned here to identify other non-useful resources.)
- General: Autism Speaks, TACA (i.e., Talking About Curing Autism), anyone who considers “neurodiversity” a bad word
- Research: Generation Rescue, anyone who cites pseudoscience or “autism epidemic”
- News: Age of Autism, The Mighty
- Housing/Adult Services: VOR, Orgs that oppose supported decision making
Shannon Des Roches Rosa is the senior editor at Thinking Person’s Guide to Autism. This post was previously published at Squidalicious. blah, blah, blah…
I used to be afraid of autism because I didn’t know any better. I didn’t know any autistic people. I came from outside the disability community, and I believed what the media told me about autism. Including, at the time, that there was a link between vaccines and autism (long since debunked). It is my hope that, by helping spread understanding about autism through stories like my family’s, we can erode that fear. That if we treat autistic people like my son with the respect they deserve and do our best to understand that Leo lives a full, happy life and is no one’s cautionary tale, we’ll ideally help more folks realize autistic people have always been part of society, that autism is a neurological difference rather than a disease, and we’ll end up with greater acceptance of autistic people. – Shannon Des Roches Rosa