Why is self-diagnosis valid? For many, the path to a formal diagnosis is not linear, cushy, or supported. In addition to the expensive price tag attached to an ASD evaluation, it can be overwhelmingly difficult to find a psychologist that is familiar with adults and/or AFAB individuals. When speaking to loved ones or therapists, many adults seeking a diagnosis are met with harsh responses:
But you make eye contact.
Why would you want a label like that?
You’re just trying to be special!
I know what autism looks like, and you aren’t like my cousin/nephew/uncle.
Everyone is a little autistic.
I think you should focus on your anxiety and depression.
Getting a diagnosis won’t help.
Sometimes, within the autistic community, self-diagnosed people with Autism are told that they have no right to claim that they have autism. They’re accused of being trendy and not putting in the work to get a diagnosis. In truth, I receive regular DMs from self-diagnosed people with autism that detail narratives being shut down by therapists and doctors, rendering them unable to get a referral. Does this mean I think we should give up? No. But we must advocate for a better, stream-lined referral system.
Still, it’s often hard to tell loved ones that we believe we are autistic. Here a few tips to help prepare self-diagnosed ASD for these conversations:
1) Look into the organizations that promote self-diagnosis. The National Autistic Society and the Autism Network are just two of many. By grounding ourselves in these organizations, we can have confidence that self-diagnosis is a valid state.
2) Read ASD books and traits lists. Others may be more likely to hear us out if we have research to cite and traits lists to show. Cynthia Kim also has a highly-reviewed book called “I Think I Might Be Autistic: A Guide to Autism Spectrum Disorder Diagnosis and Self-Discovery for Adults” that may help.
3) Use statements instead of questions. Self-diagnosed autistic people shouldn’t have to ask permission to be autistic. Try saying, “I am pursuing an autism diagnosis” or “I need a referral to an ASD specialist” without words like “I think” or “Can I…?” clouding our needs.