Autistic people who are aging have little guiding research on how a developmental disability persists across the lifespan. As our lives span out, our support options narrow to a grinding halt. Gone are the sensory gyms, the horse therapy, the tutoring, and the grooming assistance. 

Many autistic people experience an existential emergency after the age 30. Mental health concerns skyrocketed from age 30-40. Persistent suicidality is a byproduct of masking; spending decades conforming to society to access their care and community. 

In your 40s, you may realize that you, the autistic is spending every waking hour patheticalizing their situation to a generic social services worker, who has no autism page in their manual. Essentially, the autistic has to find the definitions that are substantiated on a federal level and to chronically educate and thank people for accommodating us, despite their poor human behavior or mocking our requests. 

We spend weeks waiting for poor-person’s medicaid systems to authorize referrals. We get denied speech therapy to help with social communication, because the national standard (CMS rule) is to approve speech therapy only after an acquired injury such as a stroke, and only for 6 sessions over 12 weeks.

As we move over the hill, we are generally a collective of unemployed overeducated people who may live alone and be the weirdo of their family who is neglected to be included (because he hates when we sing happy birthday). We might find ourselves overweight and sickly with connective tissue disorders, mast cell disease, and everything the trifecta has to offer. With that comes the ultimate existential emergency, when your mind starts overworking in preemptive self defense; will they treat me as my symptoms present, or will I again be forced to explain to a special specialist that autistic people also have normal people problems, except we have more of them at the same time? 

Stop calling me a self-advocate. If you are managing the social media accounts for a publicly funded program, or you are sending out email for your mailing list subscribers, we will catch you. We will educate you until your brain expands by a single molecule. You are no longer ignorant by 2024, and you can no longer claim this is the correct way to refer to DD/ID people, the demographic your agency serves. 

We are the autistics you serve, and we need your services because of the mandate for us to get the services, without being forced into advocating for ourselves. If I was an effective self advocate, I would never be diagnosed autistic in the first place, as communication impairment is the first functional impairment of the autism diagnostic criteria.