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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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 πŸ™„
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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 πŸ™„ 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 πŸ™„)
  • 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 πŸ™„

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 πŸ™‚

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 πŸ™ƒ
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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 πŸ˜‚) 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 πŸ’™

Good news from the NHS?!?

(Copied from instagram, 22.7.19)

A REALLY GOOD MEDICAL UPDATE 😭 I’m so overwhelmed rn!
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Quick recap – we had an appt booked with Dr Z this Thursday (blood result & hEDS referral), & Lyle was waiting for a call back from reception to let him know when Dr H (head doc who repeatedly didn’t call us for appts) was in to talk with. He’s the only one who will diagnose ME, which is why we’re still bothering with him. Dr W is my assigned Dr & the πŸ’© who, months ago, wrote that I was “housebound due to anxiety”, strung us along for ME stuff, then left us with a CBT referral 😑
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Today Dr Z phoned unexpectedly. She’d been researching CCI to try find places to help or info on how to stop it getting worse whilst I wait for neurology next March. She found nothing. She tried to speak with Dr H, but couldn’t contact him (same, same πŸ˜‚πŸ˜…). She spoke with Dr W (me & Lyle both looking at each other like ugh)& he mentioned the iMSK clinics – a local integrated musculo-skeletal service. Because it’s a fairly new service in our area wait times are extremely short in comparison. They have PTs, can refer for MRIs, & also have contact with neurologist, neurosurgeons etc 😱😱😱
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So where previously I was having to wait until March 2020 to see the neurologist (who wouldn’t know about CCI), just to simply get the referral for the 2 specific MRIs I need…now I should get a much sooner appt with a specialist in musculo-skeletal issues! They can refer me for the MRIs, & should also be able to appoint a hEDS-competent PT! 😱😭 THIS IS SUCH GOOD NEWS!!! It also meant I was able to cancel the appt this week (less stress yay!), although we had a pre-scheduled appt with Dr W on the 30th, unbeknownst to us. Not sure whether to keep that & give him a second chance, as iMSK was his idea πŸ€”
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Wow it feels like EVERYTHING is coming together! And I’m so exhausted from crying but so happy!!!

Waiting 9 months for an MRI – will I live that long?!

(Copied from instagram, both posted 11.7.19)

Well, that’s ridiculous.

We were supposed to be getting a list of hospitals & their wait times, then we’d fill out a form for the shortest wait (our friend said he’d drive us). Instead what we found was an appt already assigned to me, at a hospital that is miles away, & the appt is for the end of March next year πŸ™„

I do like that immediately underneath it mentions the 18 week period you should be seen in, fucking useless arseholes πŸ˜‚

Idk if we should just accept this appt, & try utilise PALS to speed it up, or if we should try work out who to contact to get the forms & info our GP said we would get πŸ˜•

I’m too tired for this shit. We’re also pretty sure I’m going into a proper depressive bipolar episode, it’s been raising its ugly head these last few days. This was obviously triggered by the ‘mad NHS week’ & the following flare. It’s the worst timed & least needed thing ever, I’m basically feeling terrible in every way rn πŸ™„

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Today has been utterly exhausting πŸ˜•

But we got some good (?) news today. Lyle got the number for an appts line by calling the surgery. The person he spoke with there said it was THE GP had chosen this hospital. Whuuuut? πŸ™„

We explained everything to him, & he advised us to phone our GP surgery,. We should explain we wanted to choose the hospital, & also ask that my GP write a letter of urgency for my neurologist referral. With that, they’ll speed up my referral & might even try keep it below 18 weeks. Why tf didn’t Dr Z do this from the get go?! πŸ™„
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So Lyle called the surgery. Before he even MENTIONED the appts guy, he was just going over my case, the receptionist had asked if Dr Z could not do a letter of urgency for my referral πŸ™„ She said she’d sort it.

We have no time frame for any of this. So even though this was (potentially, hopefully) a really good thing, all the uncertainty meant I fell down the rabbit hole…my brain couldn’t deal with recent stress, complete lack of time frame, & my current level of symptoms. This resulted in a huge autistic meltdown. I lost hours the meltdown tsunami. I still feel very broken/fragile πŸ˜₯
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In terms of autism, some of my biggest difficulties are when things don’t have a time frame, are uncertain, or don’t happen when we’ve been told they will…it feels like the entirety of the NHS revolves all these things πŸ˜‚

For an autistic peep who finds that immensely difficult…interaction with the NHS is incredibly damaging to me. I’m glad I know I’m autistic now…so I know *why* I struggle with things like this in the world…but ugh it’s very hard.

GP appt, neurology referral, & the resulting mega crash

(Copied from instagram, posted 5.7.19)

Well the appt went probably as well as we could have hoped for? Which I’m especially glad for as if we’d needed to complain, our recording sucked because Lyle left the phone in his pocket πŸ˜‚
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Dr actually listened to everything, read our CCI info, I demonstrated some hypermobility. She’s sending a referral to neurology today, & is gonna send a referral to a neurosurgeon once she’s researched CCI & spoken w/ Dr Dick.

I mentioned how scared I was as I didn’t know how to prevent CCI getting worse whilst we wait for the referral (it’s looking like it would be over a year’s wait), & she literally just said “look I’m gonna be honest, I’m not sure” 😭 Expected but 😭

She wants routine bloods (every fucking timeπŸ˜‚), & in a week’s time we have to fill in referral forms for neurology, which is when we should know more about wait times.
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Went better than expected. There was no bullying, no blaming MH, no aggression. We’ve got referrals, although they will take a terrifyingly long time.

She was also baffled why neurology had dropped me, as was the duty GP who called earlier…like why wasn’t this picked up on?! Why has it taken until now for them to realise/tell me this?! πŸ™„

She mentioned epilepsy meds briefly (wanting my to go on them for seizures), but I explained it’s much more likely my seizures are related to ME, CCI & POTS. That’s when she talked about the referral to the neurosurgeon. Asked if we could afford private, obviously we said nope. So yeah!
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Turns out the surgery had only scanned 4/26 pages of our notes onto the system (they’d told us several times they’d done them all πŸ˜‘). The only notes on the system was a 1 page summary of CCI/explanation of the measurements, & 3 images of my MRI πŸ™„ No info on ME/symptoms/diagnosis, no info on my POTS or seizures. We took in 2 copies of those notes, fuck knows where they are. We have to phone reception & if they can’t find them, take them in AGAIN πŸ™„
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Lyle said this was the first appt I’d ever dealt with all the questions on my own, & seemed so ‘okay’. That’s what you get knowing you’re #actuallyautistic πŸ˜ƒ & going in not giving a shit.

(Copied from instagram, 7.7.19)

Oh good, I’m immensely unwell πŸ™„

Two horrifying options for what’s going on here – either I’m normal people sick on top of my usual sick (always a spoonie favourite πŸ™„), or I’ve triggered a really bad ME relapse. Yikes.

The big trigger for either of these would definitely have been all the NHS bullshit this past week 😭

I feel incredibly rotten, have a really sore throat, & a sneezey runny nose. This has happened maybe 3/4 times over the past 18 months, after visits from family/friends, where it was clearly an ME relapse. So we’ll just have to wait & see… πŸ˜₯

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I’m hella sick. Throat feels like I’m swallowing shards of glass, I’m having a ton of #seizures, & experiencing the most intense exhaustion. Felt a bit better earlier so went with Bandit & Lyle to the nearby field…my thinking was: I’m in a wheelchair, this can’t be too much! It almost killed me πŸ˜‚ I felt TERRIBLE. Bandit insisted on cuddling me lots, kissing my mouth & nose, and alerting to my breathing. Came home & slept for hours. Ready to be done with this thanks, whatever this is πŸ™ƒ

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Emailing specialists abroad πŸ₯

Lyle phoned up the GP surgery today to book my blood test (2 weeks wait πŸ™„).

He was treated like shit, then the receptionist hung up before he’d had chance to ask if my MRI forms had come through, or what had happened to the notes we took in that weren’t scanned onto the system (the GP asked us to get them on). Ugh πŸ™„

We might try to switch GP surgeries, but idk. Last time we were refused, & I have a GP here who (although had no knowledge) actually listened. Reasons for trying to switch would be: wait for GP appts (3-4 weeks, other surgeries are 1-3 days); staff have been atrocious (lying about symptoms, missing appts, refusing treatment), & the receptionists are useless. .
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I’m mega unwell πŸ™„ I’m having so many seizures every day, my pain and fatigue are high, & in addition I can’t breathe well. My heart feels like it’s skipping out and my vision is made up of seizure auras, floating shapes/pinpricks of light. I don’t know if I need urgent help, or if I’m okay πŸ€”

Lyle’s being a star whilst I’m scared…I keep thinking I’ve fucked up somewhere & my spine is getting worse fast πŸ˜₯ I haven’t done my PT exercises for a few days because we’re scared they’re not what I should be doing/could be making me worse…but without PT my neck can’t get stronger.

The PT is the missing link. We know from lectures that the US specialist has a 3 pronged attack to treat CCI & delay/avoid surgery – neck brace throughout the day, PT to strengthen, avoid further trauma. We just don’t know what the PT exercises are.

The NHS continue to fail & mess us about

(Instagram post from yesterday)

I have been so exhausted today. Combo of: PEM/PENE, NHS stress, autistic meltdown. Serious oof. I slept for hours & I’m still pretty damn dead. We’ll do Nandos on a better day haha.

Good news though, we heard from the receptionist of the CCI specialist(/neurosurgeon) in the US. He’s one of the 4 specialists *in the world* that does fusion surgery. Now we have a list of tests to bully my dr into sending us off for…by fucking up & giving us an extra 2 days’ wait, we just have something extra to present & demand of Dr Dickhead. Haha 😜

(Instagram post from today)

Yesterday was a day of immense pain. We waited in all day for the head GP to ring (Lyle phoned the surgery morning & evening to check he’d ring, receptionist said he would) & of course he didn’t ring AGAIN.

We phoned PALS begging for help, but they were worse than useless…we kept getting told we needed to “go through our GP”, but they weren’t listening that we can’t even speak to our GP on the phone because HE DOESN’T RING πŸ™„
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Managed to get out for a dog walk in the evening with a migraine (which was just a REALLY bad idea πŸ˜‚), then I slept 14hrs last night πŸ˜³πŸ˜… I got Lyle to hold my head up a few times throughout the day, as my pain was just so bad & it’s the only think that brings relief πŸ˜₯
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Today we’re having a day off from fighting the NHS (because it’s so stressful, & what good does it even fucking do? πŸ™„), then tomorrow we’ll phone up & try demand a physical appt for *that day*. With any dr, even the absolute shithead Dr W, because we’ll just batter them down & demand referrals for the scans the specialist needs.

This is too ridiculous to allow it to continue, they’re being ignorant twats with my *life* here.
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The reason we haven’t had a physical appt (& have been waiting for phone appts) up until now, is that there’s a 3-4 week wait to see any dr at our surgery. The head GP (who we wanted to see) is busy for the next few months, & they won’t book you in after that (not that we could wait that long). But we’re basically going into “you’re all arseholes & we will treat you like shit’ mode, because we’re sick of all this now πŸ™„

An old MRI is a big help!

* copied from my instagram

Well that trip out was very almost in vain πŸ˜‚ .
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We got to the hospital & nobody had any idea where we needed to go. Kept saying “where did they tell you to go on the phone” – “they didn’t, they just said come to the hospital”.
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Finally got directed to reception at the x-ray dept (a really lovely dr overheard us trying to find it & gave us directions – LOVE being reminded that not all #doctorsaredickheads!!!). The receptionist was initially REALLY rude, (even saying because my MRI was Jan 2018 they’d no longer have the results – welp, nobody ever gave me them, so great πŸ˜‚), but we just stayed super polite & accommodating. Eventually got given the consent form.
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Upon filling in the form we discovered I needed to show 2 forms of ID, which they hadn’t told us on the phone. Omg πŸ˜₯
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Back to the receptionist who said we’d need to come back in with the ID. Proceeded to tell her that not only was that hard because of my health, but also because the ID they accepted, I didn’t have…explained about my name change, that we had deed poll & bank statement, but she said those wouldn’t work. Second ‘πŸ˜₯’
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Got told to sit in the waiting room. Really nice lady chatted to Lyle & even me a little about PIP & what a nightmare the process is, how they refuse before an appeal etc etc. Receptionist comes back & tells us she can give us my MRI results today, no ID needed 😱
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Wait 10mins & she appears with a CD containing all my MRI report! πŸ˜ƒ Sure it says ‘miss’ on the front, despite being out to the NHS for 2yrs, but πŸ˜‚ Also the sign on the ward said that CDs of reports would cost Β£10, so I have no idea why that was a) given to us over a printout, or b) free πŸ˜‚

(please ignore the constant misgendering from the NHS, it is painful & annoying πŸ™„ )

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Something potentially *extremely* helpful has been gained by getting my MRI images! A friend I met through the CCI group has measured my CXA for me; to put it briefly 150-165 is normal range, 135 or less indicates CCI surgery criteria.

In January 2018 my CXA was around 133 degrees.

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Obviously this is not super accurate, this person is not a professional although they do help people with MRI measurements often. BUT, this gives us a tool to get drs to listen, & offer us all the help possible! We now have SOMETHING to get their attention, instead of having to rely on the symptoms I’m describing (which the NHS have always ignored). I feel even more hopeful about the phone appt on Monday now…

Finally, I LOOK LIKE A PISSED OFF PUG!!! πŸ˜‚πŸ˜‚πŸ˜‚

I’m in so much pain 😭 Lyle is snoring next to me & I’m exhausted but can’t sleep thanks to painsomnia…so unfair πŸ˜‚

Idk if my neck is having a particularly bad day, or if my shoulders are triggering all this pain OR if them being so screwy is affecting my neck too. They’re SUPER grindy, & my left shoulder has needed putting back in 3 times today (one time with a very audible click – our friend’s face as he heard it across the room πŸ˜‚).

I hurt so bad though & now I find any pain to do with my neck terrifying – is it getting worse, am I okay?! etc. Most of all I just wish I was sleeping cuddled up to Lyle rn πŸ™„