I Fought The System And Lost (for now)

I was really hoping that my blog post about fighting for regional services for my child would’ve been a victory speech on how my knowledge and clinical expertise fought the system and won. Despite being able to recite the DSM-5-TR criteria for autism by heart, my hard won visceral-to-my-bones knowledge of autism wasn’t enough. I was up against a legal system that systematically denies high-masking BIPOC AFAB gender non-conforming, etc folks as "not autistic enough" to require costly intervention. 

Having worked with hundreds of early and late-discovered autistic folks, I have seen so many variations of access to services. Some people had IEPs in school, some did not. Some folks have children who get regional center services and some do not. There does not seem to be a uniform reason as to the lack of services although masking, race, socio-economic status, and gender all play a role. 

When I fought for my child to have regional services, I laid it all on the table. I brought in every quote from the DSM covering masking, BIPOC, and AFAB presentations of autism. I quoted the transcripts of when the regional center’s psychologist misquoted and misinterpreted the DSM. I had over 5 assessments supporting the diagnosis of autism. And we lost because one psychologist hired by the regional center, who had no specialized training in AFAB, BIPOC, high-masking autism believed she wasn’t autistic.

I am walking away from this experience with a stronger sense of what autism is, regardless of the legal reasons it can be denied. My arguments were solid. Autism is autism, I know what it is. The world has not caught up to what high-masking means and how the internalized distress can fester inside of a person and cause significant damage that DOES require support and accommodations and "costly" services.

I am walking away with a stronger sense of my role as an advocate and clinician. I have now had a front row seat to how we are marginalized including the most vulnerable among us (Black, high-masking, AFAB). There is so much more work to do and I am here for it.