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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PEM crash

I’m experiencing such PEM rn 🙄

I had my iMSK appt last Tuesday, on Thursday we had a picnic in my electric wheelchair, then on Saturday we went to Lyle’s parent’s for a few hours…so now I’m in a mega crash.

My exhaustion is off the charts. In my most well moments I can barely watch tv or read. Neck pain is awful. Seizures are bad. But mostly it’s the crippling exhaustion.

The adventures were fun, the appt was awful, but the PEM/PENE is the worst!!

(Bandit is my assistance dog in training, & yes he is extremely adorable 😉)

But these last two days? This is my reality…

IMSK appt

iMSK appt was….mainly good.

Didn’t get the MRI referral, which is why the GP fricking referred me there & what I need urgently, so that is absolutely NOT good. But she said she was too worried she’d order the wrong ones, even when I told her what the CCI specialist in the US had asked for.

So she’s having to refer me to a spinal specialist to get the MRIs they think I need, which has a really long waiting list & involves a lot of traveling 🙄
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Consultant also hadn’t been told I was autistic/the adjustments I needed, which Lyle had phoned about last week & was told they’d pass them along.

The biggest issue with this was it meant I didn’t get detailed explanations of what she was going to be doing in tests, or asking for consent several times (as when I’m making I’ll just say yes automatically). So one test involved stroking all along my face, which I wasn’t told about & which pushed me WAY over threshold. It caused hours of struggle afterwards 🙄 She also misgendered me, despite my cap covered in pronoun pins. This also made me autie struggle a lot more, & feel lost/overwhelmed.
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But the good:

  • we’re getting referral to a spine specialist so they can decide which MRIs I need (this will be a wait of months 🙄)
  • she agreed that I almost definitely have hEDS & has said in our next appt we’ll go through criteria.
  • she’s booked me an appt to see her again in 6 weeks
  • she’s gonna talk to the rheumatologist, regarding EDS diagnosis (see below as to why)
  • she’s also getting in touch with pain management & has suggested amitriptyline for me

Apparently in this area there’s no way to diagnose EDS – they have to apply for an out of area grant & send me to a specialist in Sheffield. The grant is exceedingly hard to get, so yet another diagnosis might be unobtainable due to lack of services in my area. Welcome to healthcare in the UK 🙄

iMSK consultant also pulled up my recent bloodwork, & said my inflammation markers were high. I wasn’t told this by my GP surgery, I just got told my iron was low. So she’s ordered a repeat bloodtest before I next see her 🙂

The last 1/4 of the appt was lost to me as seizures were triggered. She asked me to stand up (turned out so she could do Romberg test); I told her I’d have a seizure, she got iffy, but I pushed for it as I wanted her to do all the tests she needed. Unfortunately after the seizure due to all the bright lights I crashed & could barely formulate thoughts due to fog…so I was pretty ‘blank’ for the rest of the appt 🙃
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Overall…kind of a positive appt.

Didn’t get what I need most, but we got some positives.

It did trigger a huge shutdown/meltdown episode, which left me feeling unable to handle going through the city/getting a train home.

As a result Lyle ended up pushing me 8 miles along the canal (constantly reassuring me he loves hiking & the weather was gorgeous 😂) so I’d be able to recover/wouldn’t have to deal with loud noises/lights/crowds 😭

Hugely grateful to him, as I wouldn’t have been okay otherwise. As it was I could rest, recover, & talk through my confusion 💙

10th August 2019

The “hi, done with life today!” look.

Life is all the pain today.

Seizures are high, joint pain is high, neck pain is high, & I’d say there’s an 80% chance of a migraine.

This is PEM/PENE for our fab beach day 2 days ago 😭

Our village is flooded, kinda gutted I’m too ill to go check it out.

Thursday 8th August 2019

Welp my shoulder had been partially out for 2 days & that is why it had been so immensely painful 🙃😂

I was reaching for something with my other arm last night, there was a CLUNK & I yelled in pain, then all shoulder pain drastically lowered. Since then I’ve been able to move it with minimal crunching/grinding yaaay.

First day I’ve woken up with no shoulder agony in quite some time 😂

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Alright heart rate calm tf down 🙄 This was as Lyle was helping me get dressed…we’re taking Zeke & Bandit to the beach with a picnic, & we’ll hopefully get to paddle/swim 😃

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Basically this was THE BEST TRIP OUT EVER 😊

Zeke handled the beach like a champ (one ditch where I had to stand as Lyle got him over, then obviously I couldn’t use him to get down to the water) but he was EPIC!

We chilled on the beach for a while. It’s so gorgeous there. Then I slowly began my descent to the water…lots of rests en route, alerts from Bandit 😅 Then I sat in the sea & it was awesome.

The quicksand was crazy; the ground was all bouncy, Lyle couldn’t move for sinking hahaha, & when I crawled the suction subluxed my kneecap 😂😂😂

But when I was sat still in the middle of the stream, it was *bliss* 😍

Afterwards we dried off & had our picnic…totally great few hours!
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Totally worth all the pain I’m in now!

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I’m so excited rn 😃

We were talking tonight about my #bucketlist & decided that with next week’s budget, we’d book a night at the resort my parents often stay in nearby, & we’d do it for my birthday in October. It’s a truly beautiful place, they’re welcoming of ADs, & staying there would be a huge accomplishment for me!
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Now my parents had already said they’d booked a night in this area for my birthday. In fact they booked this when we fell out & didn’t speak for 4 months, which is pretty odd 😂

So I thought we could coincide with that. When I phoned my parents up to ask what dates they were coming up on, they said they’d pay for the lodge for us as my birthday present 😱 AND THEY DID!

So it’s officially booked & aaaagh I can’t wait, honestly! It’s like a holiday for when you’re too poorly to handle a holiday 😃 We haven’t had a night away from home in 7yrs, so this will be special 🙂

Discrimination from local council & Cumbria Design Scaffold

We’ve been fighting the council & the scaffolding company (Cumbria Design Scaffold) for several months.

All we wanted was that they put ramps down where scaffolding has made the pavement inaccessible.

My main manual wheelchair is now broken thanks to their inaccessible design, & since then I’ve been unable to get to the shops, transport links, GP surgery, vets etc in the town centre 10mins from my house.

Finally, after waiting months, we were told they were putting ramps down.

Only they haven’t put ramps down, what they’ve actually done is closed the entire fucking pavement & told pedestrians to use the other side.

THE OTHER PAVEMENT IS TOO NARROW FOR A WHEELCHAIR YOU ABSOLUTE ARSEHOLES!!!

Hence why we need bloody ramps. Aaaagh the ableism is fucking breaking me 😭

Without ramps it takes 45-60mins to get into town the accessible way – 45min to the supermarket, 60min to the train station.

Next week I have a super important medical appt, it’s at 10am in the city…we’re gonna have to take the 60min route to get to the train station because the council are disgusting ableist pricks who don’t give a shit about disabled people. Time out the house needs to be kept minimal, that day will have HUGE repercussions on my health, & now it’s got an extra 2hrs added to it…UUUUGH.

Zeke is GO!!

ZEKE’S NEW BATTERIES WORK!!

Lyle’s officially a genius, as he was obviously the one who sorted it all out 😃😆

This was our first time getting to do a proper hike with him, & see how much he’ll enhance my life. It’s A LOT! 😍

This felt amazing. Being able to have that little bit of independence in deciding where I wanted to go, being able to be *beside* Lyle & talk easily, be able to adventure without feeling like a burden or that Lyle doesn’t want to do this as it’s a lot of effort & he already does so much…it was amaaazing 🙂

Zeke is a powerful beast. We took him on two VERY steep hills & he made them look easy on half power!! We were out over an hour and his battery level went down 1 bar out of 5 😃

Tomorrow we’re going to go the long way into town, which takes about an hour & involves a SUPER steep hill!! Then we can go around the supermarket TOGETHER, without Lyle having to push & do it all. I’m excited 😃