I am an autism mom. I write about autism from the only point of view I know: my own. I am Casey’s mother. I am not autistic, I am not perfect. I never will be. My thoughts, my points of view have evolved over the years, and continue to do so.
I am an autism mom. When Casey was diagnosed, all I could think about was “curing” him. All I could think about was wanting to get relief from the hours upon hours of screaming, biting, and hitting that we were dealing with on a daily basis. I wanted him to be like his brothers. I wanted him to be able to connect with the world around him. He spent anywhere between 5 to 10 hours a day in the throes of a kind of suffering I could not alleviate. I did not want him to suffer. I did not want him to be autistic. I did not want to be an autism mom.
I am an autism mom and I write to other parents of special needs. I do not write on behalf of them. What I say isn’t the message of the parent community, but as one parent of one autistic child. I write about the good and the bad, the wins and the losses of life with autism. I write about coming to accept my son for who he is, autism included. I write about what I’m learning. I hope that I am growing.
I am an autism mom and I look to autistic adults for direction, for guidance, and for a window into what is going on with my son. I look to people like Rachel Cohen Rottenberg, Ari Ne’eman, Temple Grandin and my adult autistic friends for this perspective. Autism parents like me need all the help we can get.
Autistic adults have spoken loudly about the “infantilization of autism” – or “When members of the public envision the disability of autism, they most likely envision a child, rather than an adult” (Disability Studies Quarterly, Stevenson et al). This is a very real thing. When people think about autism, they think about children. This often makes the adults with autism feel invisible, and I’m not okay with that. Their voices are powerful and necessary.
I am an autism mom and I support and love the autistic adults that I have the pleasure of knowing personally and through their blogs and books. I cannot and will not speak for them because I feel like they are doing a better job of it than I ever could. I want my son to grow up to be the next John Elder Robinson or Steve Summers. And right now, I’m doing the best that I know how to to teach him that he can be anything he wants; and that his autism makes him “different, not less”; and that it enables him to do things that he could not do otherwise. In teaching him or writing here, do I always get it right? Absolutely not. So I’m asking for the patience and understanding of autistic adults as I try to navigate autism. And I promise these amazing adults nothing less in return.
I am an autism mom and I’m trying to understand. I’m trying to understand autism through parenting my child and through my association with autistic adults.
I am an autism mom and I’m begging you to try to understand me as well.