I am always hugely supportive of self-diagnosed autistic people.
Research is obviously needed; to self diagnose you need to be educated. The #actuallyautistic hashtag on twitter is a good starting place. The AQ test, RDOS test, & family history (if available) can also help point you in the right direction.
Autism is a spectrum, it’s not experienced the same by everybody…the sensory issues, stimming, social difficulties, shutdowns/meltdowns are all unique experiences.
For a lot of adults who were missed as children (particularly AFABs – assigned female at birth), self diagnosis can be the only option.
This can be due to:
- misconceptions on autism perpetrated by healthcare professionals (eg “you can’t be autistic you just made eye contact!”)
- medical trauma/C-PTSD
- disability (inability to travel to specialists, inability to wait several years to see specialists etc)
- family history/family members at appts impossible (often these are a requirement at assessments, & professionals refuse to work around)
- or their country not offering adult diagnostic services.
This is the case of many places in the UK. Only certain areas have the service to diagnose autism in adults, & it involves much fighting to be referred by incompetent drs, & then years of waiting.
Technically, I count as self diagnosed. The NHS doesn’t have a way to diagnose me in my county (& even if they did I can’t travel far due to physical disability); all I have is my NHS autism passport – no formal diagnosis on paper.
The vast majority of self diagnosed autistics have struggled THEIR WHOLE LIVES. Since childhood knowing they were different, but never having an explanation. Treated horribly by teachers, students, family moments; made to feel like a failure & an outsider. Then as an adult they discover they are autistic, & there’s a whole community out there who truly understand them!! Finally they’re with others who understand, support them, encourage them to be themselves & stim as they need!
And suddenly their whole life has changed.
It isn’t my fault my autism was missed in childhood. It isn’t my fault AFABs are hugely undiagnosed & dismissed. It isn’t my fault the NHS doesn’t deem it important to diagnose adults correctly.
Nobody has a right to gatekeep or tell others how their health is. We, as autistic peeps, should be supporting each other.