When my child was first diagnosed with autism, I found tons of online resources by and for neurotypical parents, therapists and autism awareness advocates. Basically, people like me trying to understand and work with people like my kid.
These sources are useful for avoiding a sense of isolation, finding resources, and developing a network of support with other parents. But, they’re less useful when trying to decide on therapies or trying to understand my child’s experience of the world.
Groups like Autism Speaks painted images of life with an autistic child that were despairingly different from what occurred in our home, and I knew I had to look elsewhere. Fortunately, there are several autistic writers and advocates with plenty to say.
So, here are the pages I am reading so far and the list grows as I continue to learn.
These pages are in alphabetical order, and some are organizations that include both autistic and NT contributors.
- Autism Women’s Network (I really like Amy Sequenzia’s writing, more on her later)
- The Caffeinated Autistic (a parent whose diagnosis with ASD came following their child’s diagnosis. This post serves as a nice introduction)
- Peyton Goddard (also see the book I am Intelligent)
- Ido Kedar writes at Ido in Autismland
- Sharisa-Kochmeister wrote prose and poetry at My Surreal Life until she suddenly stopped, and the only stories explaining this have been harrowing: Denver Post, Autism Wars, and AWN in 2015.
- Normal is Overrated is a blog that hasn’t been updated in a long while, but if you’re a new reader like me, it’s all new to you anyway.
- Bogi Takács writes about a variety of subjects and is active on Twitter. (Though it’s more youth lit related than parenting, I found eir article on minority representation in youth fiction about autism interesting)
- Amythest Shaber blogs at neurowonderful and has a youtube channel called “Ask an Autistic” with explanations of many aspects of autism geared toward neurotypical people.
- Amy Sequenzia links to her externally published works at Non-Speaking Autistic Speaking
- Thinking Person’s Guide to Autism
- Tone it Down Taupe is a Facebook page that turns the tables on the obnoxiousness and fear mongering running rampant during Autism Awareness Month with satire and snark
- Wrong Planet is an article and forum page “designed for individuals (and parents / professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences.” (I keep this article in my bookmark bar)
- Emma Zurcher-Long writes Emma’s Hope Book, along with her parents. While her parents started the blog, Emma has taken over much of the writing.
Here are some organizations that focus on advocacy (rather than prevention of an “epidemic”):
- AASPIRE (“AASPIRE was started by academics and autistics who recognized the need to work together to develop and implement research studies that truly benefit the autistic community.”)
- Autistic Self Advocacy Network (the opposite of Autism Speaks: “We work to empower Autistic people across the world to take control of our own lives and the future of our common community, and seek to organize the Autistic community to ensure our voices are heard in the national conversation about us. Nothing About Us, Without Us!”)
- TASH (The Association for Persons with Severe Handicaps)
I know I said I wasn’t including any parent blogs, but I don’t make lists often and there are only a few of them. So here are my favorite:
- Kerima Çevik at The Autism Wars
- MOM-NOS blogs at Mom – Not Otherwise Specified
- Ollibean (“We’re doing our part to make sure that our children grow up in a socially just world where ALL people are valued and included .”)
- “Autism: Whom to Trust and Whom to Avoid Like The Plague” at Dawns Brain (the blog is otherwise unrelated to autism)
If you favor a site or writer focused on neurodiversity and acceptance who is not listed here, please add them in the comments. If you feel a link on this list is misplaced, please let me know. I’m still growing as a parent in this, and have much more to learn.
Edited to link to Amethyst Schaber’s public Facebook page 4/16/16.