Thread by @shannonrosa

It’s tricky to be a parent advocate in the autism community, especially if, like me, you are not autistic yourself. Autism is about autistic people, & that’s who should be leading autism advocacy efforts. Threading my recent @AutismOAR column:

researchautism.org/what-is-the-ro… #autism 1/

@AutismOAR …But in the nearly two decades since my son was diagnosed, I’ve learned that I do have a role as an advocate: To learn and share and fight for the policies and knowledge needed for my son to live a good life as an autistic person.

#autism #parenting 2/

Parents of autistic people simply can’t avoid being advocates. It is not reasonable to be passive when our loved ones need so much support, & when there are so many roadblocks to getting that support from educational, social, & medical networks that are supposed to provide it. 3/

But to be the most effective advocates for our autistic kids, I’ve learned that we must listen to what autistic people say about what they need & how they perceive the physical & social worlds, & apply the appropriate parts to our own children’s lives: autisticadvocacy.org/book/start-her… 4/

We must look for—or encourage—the same autistic-informed approach in the many people who will be on our children’s teams throughout their lives, like teachers, therapists, direct support workers, and medical professionals. 5/

Ideally, our autistic children would tell us exactly what they want and need themselves. But that is not always possible for children who are too young, who have communication disabilities… 6/

…or who, like many autistic people, have trouble interpreting their own emotions (alexithymia) or interpreting their own body’s signals (interoception). 7/

Sometimes, what our kids need is not obvious or intuitive. For this reason, being their most effective advocate means learning from autistic people about autistic mindsets and experiences—insights that are rarely possible for even observant or empathetic non-autistic people. 8/

The ways in which our autistic children react to and exist in the world can be very different from mainstream expectations about behavior. If we parents don’t have autistic insights into why our children act and react the way they do… 9/

… then our reflexive responses may be to expect our children to be able to do and cope the same way as non-autistic peers, which is often neither realistic or possible—and can often lead to avoidable meltdowns, anxiety, self-injury, or aggression:

thinkingautismguide.com/2022/01/autism… 10/

I’ve learned that our autistic kids need us to be their advocates, to step in and create safe spaces for them if they get overwhelmed. 11/

Advocacy also includes sharing with other parents and caregivers (and even professionals) what our autistic loved ones need to cope, learn, and thrive—if those people haven’t learned yet. This is part of why I co-created Thinking Person’s Guide to Autism: @ThinkingAutism. 12/

I’m fairly sure I was always a loving mom to my son, but I wasn’t always the best advocate for him as an autistic person. 13/

To be effective parent advocates for our autistic children, we have to retain critical thinking skills while remaining empathetic and aware of the vast variety of experiences of both autistic people and their parents and caregivers. 14/

Becoming an effective advocate can take time. It certainly did for me. That is another part of why I advocate—to help other parents sidestep the mistakes I made, and start being the parent their autistic child needs sooner rather than later. 15/

Trying to be a good advocate also means being aware of your own limitations. In addition to not being autistic, I am not an autism researcher or medical professional. I need to rely on and check in with those who are experts (many of whom are autistic). 16/

This is part of why I co-created #AutINSAR—a discussion b/t autistic people & autism researchers; why I am grateful for research efforts like the Participatory Autism Research Collective; & why I look to efforts like the @aaspireproject Healthcare Toolkit for best practices. 17/

I had to do a lot of hard unlearning about autism and disability after my son was diagnosed with autism. It took many years to understand that autism and disability do not automatically mean tragedy or misery. 18/

I thank autistic mentors for helping me learn what being my autistic son’s best advocate actually means and what he needs from me.

The three things I learned from autistic advocates that make the biggest difference as a parent advocate are: 19/

1) Respect your child’s humanity. My son has the same capacity for joy, frustration, and love as anyone else. I will not tolerate him being treated as though he doesn’t matter or as though he matters less than non-autistic people. #neurodiversity 20/

2) Respect your child’s capability. Autistic children have developmental disabilities. That doesn’t mean they won’t ever learn to do things. In many ways, it means they will continue to learn things, though sometimes long after their peers do. thinkingautismguide.com/2019/06/danger…

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My autistic son surprises me every day; as his advocate, it is my duty to remind other people not to underestimate him. 22/

3) Respect your autistic child’s privacy. I will admit, I am a reformed, oversharing, mommy blogger. But autistic people taught me that not only is it demeaning my son to share personal details about his struggles publicly…

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…but it reinforces negative stereotypes about autism when parents only focus on their kids' most difficult moments:
washingtonpost.com/lifestyle/2020…

Instead, I have connected with understanding parents (many of whom are also autistic) so we can problem-solve (or grouse) in private. 24/

My autistic son is now an adult, and while he cheerfully self-advocates, he does not do public advocacy. And I don’t think being an advocate means speaking for him. 25/

Instead, my role is to share the best info I can find; connect with other parents & caregivers so I can help them avoid my mistakes; & support autistic insights & writers & advocates who share autistic insights, to make the world a better place for the autistic community. 26/26