Last updated on November 26, 2023
Autistics relying on self-diagnosis concern me, but not for the reasons readers might assume.
The cost of a diagnostic assessment prevents too many people from getting the help they need and deserve.
Distinguish between not liking that people have no choice but self-diagnose and my concerns that self-diagnoses aren’t sufficient to help people succeed. Self-diagnoses don’t ensure legal protections. They do not lead to state and local services.
A college or university won’t give supports to a self-diagnosed autistic.
An employer won’t offer ADA accommodations to a self-diagnosed autistic.
I am officially diagnosed and that’s still not enough. I was dismissed as a problem during graduate school. I couldn’t get the schools at which I taught to make some minimal adjustments for my needs.
Autistic with ADHD and other challenges, I know my rights… and those rights have not protected me.
I’m going to be an aggressive defender of our daughters’ rights. They are neurodiverse and deserve all the protections and all the supports mandated by state and federal laws.
To ensure educational services and supports for one of our daughters, we need a new assessment. The testing costs $2000 to $3000. Thankfully, insurance covers some for us, but not every family is so fortunate.
Assessments should be covered by all insurance, including those policies purchased on the ACA exchanges. Nobody in need of services and legal protections should be denied those because of the costs associated with screening.
If you have access to screening, especially for a child, do all you can to force school systems and insurance providers to meet the needs of that child. We need to ensure mental health is treated like all healthcare under insurance and government programs.
I’m not against the people who self-diagnose. I’m against a broken system that leaves autistics without access to testing.
Many autistics have co-existing (co-morbid) conditions that must be treated. Adult autistics have higher rates of depression, anxiety, and post-traumatic stress disorder. Our lives tend to be shorter because we don’t always understand how to navigate the complex systems that deliver care. We also don’t always recognize when we need help.
Mental health concerns require serious interventions. I’ve lost friends to depression and I’ve watched too many students struggle with mental health challenges.
Self-diagnoses worry me because they prove our system doesn’t care enough about autistics.
It bothers me that the same insurance that won’t help with assessments and diagnoses will cover applied behavior analysis (ABA) and other therapies. I notice a lot of pressure on lawmakers to support ABA. Where’s the pressure for diagnostic coverage for all people?
We need to fight for reforms.