My thoughts on self diagnosed autistics

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:

  • money
  • 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.

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9th August 2019

I’m falling apart, I swear idk if my joints have ever been this bad.

Wrists = agony, shoulders = agony, one hip is being a twat & my fingers are awful too. All my joints ache & pain is immense.

Can’t cope with my phone or Xbox controller, can’t eat with cutlery, can’t hold a drink. Ugh. Trying wrist bands to lower pain.

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Went on a small dog walk today but had an autistic meltdown, Lyle realised it was ongoing fallout from him being ill last night…I always struggle with him being poorly & knowing what I should be doing. That sucked, although Bandit was awesome…peep him alerting post meltdown.

Got a letter asking me to answer a survey on the ambulance service that helped us avoid A&E last month…the only thing I could positively rate the NHS on currently 😂 May be quiet today as Lyle has had to type this for me!

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Check out this storm!! 😱

Autism passport: done!!

After, I think, 2 months of constant effort…the autism passport is finally done. Phew.

Now I have another weapon to fight shitty drs & handle medical appts!Excuse me whilst I hide in a dark room for the next week… 😂

This is a local NHS scheme, & the passport actually instructs drs during any hospital visit that they must print out, read, & gang the passport on my bed. Any staff interacting with me are supposed to read it. This should hopefully be an awesome tool at stopping medical staff being dickheads, & limiting trauma.

Autism passport aggro

If I had the energy, I’d be banging my head against the wall rn 😂

So there’s a really cool local NHS scheme where autistic patients get a passport to fill in. This gets logged on your file, you get a copy too, & at hospital appts or visits, staff are asked to print the passport out, read it, & hang it on end of your bed. The passport gives staff crucial information about how your autism effects you (things you like, things you don’t like, sensory issues), & also has blocks to tell them about other health issues you have too.

For me, this will be an extremely helpful safety net, as at every hospital visit I’ve had to deal with abusive or bullying doctors.

Needless to say I want this tool asap, but unfortunately because it’s produced by the NHS & I guess a new scheme, it’s faulty af. I’ve tried filling this beast in eight times now, only for it to fuck up each and every one of them 😂

Text disappearing, icons disappearing, images disappearing, text changing size, images & text boxes overlapping each other. Like, just a ridiculous number of technical issues.

I thought I’d finally got it working today. But nope, nope, so much nope 😂

The sent file looked great. We re-downloaded it to check it was okay, & this is what we got instead!

Uuuugh.

If it worked it would be FANTASTIC. But 🙄

We’ve asked the guy for help for the third time, hopefully he’ll respond & we can get it sorted… 😅

I wasn’t out done asap as when I go see the GP about my hypermobile joints & rheumatoid arthritis, I wasn’t to hand it over to them. It’s been a loooong process 😂