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I think I’m autistic - where do I go with this?

30 replies

thinkimautistic · 20/10/2021 15:46

Uni placement, observing an assessment for autism earlier and I had the sudden realisation that they were describing me .

I’ve always been very anxious, and awkward for want of a better word . I was horrendously bullied at school, I never had close friends . I did have a group of girls I hung about with in my older teens but I was often on the outside; they said I was irritating which I can well believe. I don’t understand how friendships work . I have a couple of people I talk to very regularly but not appropriate ‘friendship’ as such (ie not always very reciprocal) . I find I cling very closely to one ‘friend’ in particular to the point she probably finds it suffocating!

As an adult I spend my days largely very much alone . I’ve worked, I’ve studied, but I’ve never made good close long lasting friendships . I find stuff like the pub, parties very awkward . I found the staff room and staff politics a nightmare at work and was bullied by a couple of colleagues .

Never had a relationship at all, I don’t understand how that works iyswim .

I’ve never understood how to play sports - it makes zero sense to me, I can’t get competitive, I couldn’t do it at school - diagnosed dyspraxic but I think it goes beyond that . I was similar with games and parties as a child, I didn’t know how to dance or join in with stuff and felt mostly alone .

I’m always extremely anxious and tense, I have panic attacks frequently . I can’t do stuff like shopping centres, public transport, busy places without struggling . Noises of cars, trains, traffic lights, I find very hard .

Language I am terrible with sarcasm and metaphors and stuff . Told I was a ‘mini professor’ as a child . Have a weird thing where I can remember a great deal for no real reason (i.e. I remember dates, phone numbers, bank numbers, addresses) .

I’ve had mental health help for years on and off, several different diagnoses . At the moment I’m on highest dose of anti depressant, propranolol and bloody diazepam to function and even then it’s limited .

I watch the same TV programmes again and again for weeks - not because I particularly enjoy them but because I feel safe with them on in background (Friends or something like). Sort of similar with eating .

I self soothe a lot and I remember vividly as a child spinning, clicking my tongue, etc - as an adult I just shoogle my leg all the time .

Autism would appear to run in my family - sibling is diagnosed, mother is strongly suspected (complex presentation) and father has traits .

I ended up in tears this morning (in private) as it’s hit me that I’m actually very, very lonely and angry with myself for lacking what everyone else seems to have .

I’m dithering over asking uni if I could talk it through privately, or write something reflective; but where do I go with it? I don’t know if I want to pursue a diagnosis - would it help? Does it make any difference knowing or is it better trying to just accept me as me?

OP posts:
isitjustmeeee · 20/10/2021 15:51

First step is your GP if you want a diagnosis. It would help you and your course providers and future employers if you were found to be on the spectrum.

thinkimautistic · 20/10/2021 16:02

Thank you, I’ll ask GP - I keep thinking even if they know I’m autistic they can’t fix it, but I suppose there’s things I could do to make my life easier .

It seems to always be worse when I’m at home alone, even simple things are very difficult at times . I’m in student residence and that’s proving very very hard, stuff like accessing the laundry for example (due to the loud noises and busy-ness) .

I’ll definitely speak to GP, hopefully there’s something they can offer

OP posts:
merryhouse · 20/10/2021 16:07

angry with myself for lacking what everyone else seems to have .

Does it make any difference knowing or is it better trying to just accept me as me?

I think it might help if you look at it as something to help you understand yourself - you don't do and have the typical life because your brain is not typical

I don't have a diagnosis but I've always been certain I'm on the spectrum - I was Officially Weird at school Grin Friendship issues, ridiculous memory, fidgeting, social awkwardness, comfort entertainment (I remember once realising that I didn't want to watch the next episode of something solely because I couldn't see where the story was about to go). Relationship is never entirely what my husband expected either.

I have recently started to think that I might also have ADHD, and it would explain so much that I've begun to forgive myself for.

Now you have this idea, perhaps let go of the anger and give your inner child a cuddle instead? I've spent 50 years working with rather than against my probable autism and I'm sure it's helped.

Catnuzzle · 20/10/2021 16:07

I could have written your post! I've got a telephone appointment with my GP next month about this. I had a bit of a light bulb moment and realised this is probably why I suffer with depression and anxiety. I've always felt 'different'. DD2 was diagnosed last year and we are so similar. I don't think a diagnosis will change anything. But it will explain a lot and hopefully give me some peace.

isitjustmeeee · 20/10/2021 16:10

I thought I was once. I made a GP appt and they just got me to fill out a questionnaire and if you scores highly you were referred up the chain for further assessment by a specialist. I never heard back from them so I assume I'm not!

InDispairThisWeek · 20/10/2021 16:48

I’m just going through this with my dd who is 17, we’ve gone private because of the waiting times and the fact she thinks (hopes?) it will be useful to have a diagnosis before university. She had an initial assessment yesterday where we were told she is highly likely to get a diagnosis of autism and we have the full assessment later this week.

Dd knows it won’t instantly change anything (she suffers very badly with anxiety) but I think she wants to understand why she is different and I guess put a name to it.

Thenose · 20/10/2021 17:14

InDispairThisWeek, a diagnosis will almost certainly be very valuable for your dd at uni. Mine offers accommodations including extra time and the use of a word processor in exams, weekly hour-long sessions with a mental health counsellor for the course duration, 1-2-1 study support, free tech equipment and study software.

OutrageousFlavourLikeFreesias · 20/10/2021 17:31

I know quite a few people who were diagnosed as autistic as adults, and they've all found it hugely helpful. Partly because it has helped them understand more about themselves. Partly because it helps them "explain" themselves to others. And also because it entities them to reasonable adjustments and support at work.

So based on their experiences, I would definitely recommend going to your GP and pursuing this. Best of luck whatever you decide.

Marelle · 20/10/2021 17:33

The NHS isn’t interested in diagnosing or supporting adults with autism. At the moment they are barely even bothering to treat serious illnesses like cancer, let alone autism.

InDispairThisWeek · 20/10/2021 17:38

Thanks Thenose, that’s really good to hear.

OneRingToRuleThemAll · 20/10/2021 17:44

If you can afford it I'd go private. I'm on the waiting list for assessment at the Lorna Wing centre. The wait is currently 5-6 months for a private patient.

It was during my daughter's diagnosis was like hang on, this is me too.

GatoradeMeBitch · 20/10/2021 17:46

As an adult, be prepared to fund your own assessment if you want to get anywhere.

LonginesPrime · 20/10/2021 17:58

I went through this last year with ADHD, OP, and am still on the NHS waiting list for an autism assessment (referred through NHS ADHD team via my GP).

I think that, on balance, a diagnosis is helpful, and I would definitely do it while you're at Uni, as you can get disability support that's not available to non-studying adults (obviously workers can access some support through employers, etc, but I'd recommend getting to know your needs before starting work if you can!).

The downside of late diagnosis is something you've touched on already - the fact that in accepting the diagnosis, you're forced to confront all those misunderstandings and missed opportunities from the past, and those confusing painful memories that turn out not be so confusing after all.

The diagnosis makes you realise that those painful experiences where you felt at odds with the world but couldn't work out why were unnecessarily painful - if only you'd been diagnosed earlier, it would have spared you all that heartache and confusion and isolation.

So it's bittersweet and brings back a lot of past difficulties. But I would rather know, personally, as I wasn't actually living in blissful ignorance before my diagnosis - it was more like sad-to-torturous ignorance. So I find that knowing is better as I'm far more hopeful for my future now I better understand myself and my relationship to others.

UselessASD · 20/10/2021 18:17

I so agree with @LonginesPrime that diagnosis for me was bitter sweet. I am adult diagnosed and there is basically no support and I have realised I really need that.

HappyPumpkin81 · 20/10/2021 18:24

@Marelle The NHS is interested in assessing and diagnosing adults. I work 4 day a week doing autism assessments for the NHS and in average see 2 adults, and 2 children a week. It can be very helpful to diagnose adults as they are often receiving significant input from mental health services, and understanding themselves better can lead to an improvement in their mental health.

OP I would take what you have written here to your GP and request an assessment. I would be happy to see you based on your description. You may not have the condition, but an assessment can be very helpful.

Marelle · 21/10/2021 09:51

Marelle The NHS is interested in assessing and diagnosing adults
They told me to fuck off 🤷‍♀️

girlofthenorth · 21/10/2021 09:56

There should be a accessibility / disability / advocacy service at the uni who should also be able to help you find out what support is available through the uni . Hope you get the support you need soon . Also there will be some local groups for adults on social media you can look for .

WTFCanIDoAboutThis · 21/10/2021 09:58

@OneRingToRuleThemAll

If you can afford it I'd go private. I'm on the waiting list for assessment at the Lorna Wing centre. The wait is currently 5-6 months for a private patient.

It was during my daughter's diagnosis was like hang on, this is me too.

What's the ballpark cost for a private assessment?
penguinflippers · 21/10/2021 10:07

Hi OP, it’s worth speaking to your uni’s student advice centre/wellbeing service, they may be able to refer you for an autism assessment through their disability support service which I imagine would be much quicker than going through your GP. The uni that I work at offers this so I hope yours does too. Wishing you the best of luck in getting your diagnosis - I’m autistic too, was diagnosed (privately) at 33 Flowers

msssm · 21/10/2021 10:12

It does depend where you live. Here in Moray there is no adult autism pathway.
The only option here is going private and travelling (closest private doctor is a good hour and 30 mins away). I have no option but to save for a long time to be able to be assessed. I hope you are luckier op.

amusedbush · 21/10/2021 10:30

I have suspected I’m autistic for years and I finally went to my GP at the end of last year. She referred me to the local NHS adult autism team and they were so, so reticent to diagnose. While I was on the waiting list, I spoke to a couple of their staff and they kept impressing upon me how few adults are diagnosed through them. My assessment was in May and the first thing the clinician said to me was ‘I don’t believe this nonsense about men and women presenting differently, you either have autism or you don’t. I don’t think we’ll be diagnosing today but you were referred to us so let’s get it over with’ Angry at the end he said I’m definitely not autistic because I’m ‘too articulate’ and I made a joke.

A few months later I spoke at length with an autism specialist who told me that clinician and his shitty questionnaires used theories from 50 years ago. She read his report and was gobsmacked by how terrible he was at his job.

I paid to go private earlier this month and the experience could not have been more different. I completed screening tools the NHS didn’t ask for and the questionnaires were so in-depth and varied it took me a week to complete them. The psych also looked over previous diagnoses, external reports etc and after our meeting she diagnosed me with ASD.

Sorry for the ramble, I guess my point is don’t hang your hopes on the NHS service! I felt very belittled and dismissed by them.

HappyPumpkin81 · 21/10/2021 12:43

If you're not able to access an assessment on the NHS I would complain. There is definitely a need out there and it is available in some areas. @msssm NHS Grampian did have an adult assessment pathway in Aberdeen pre March 2020. It was only 1 morning a week and might have been axed. You could try writing to Ricard Lochead as the Scottish Government is championing lots of autism initiatives.

CoffeeWithCheese · 21/10/2021 13:22

I noted the words uni placement. You may have a way forward (I'm in the same situation) going via the uni Autism team. I'm on the waiting list for an assessment via them, but it's not looking like I'll make any progress near the top of the list before I graduate (I'm in my final year) - they did a lot of screening on me and decided to support me as if I was regardless.

We also have placement adjustments forms - I've started declaring the situation on there as well now (after I got hammered in one placement report for things which were very much ASD and anxiety linked). My GP laughed at me when I suggested waiting for an NHS appointment... said the waiting lists meant I had no chance.

I'm also now looking at trying to go privately if I can afford it.

Seriously impressed you got to sit in on an autism assessment though (I'm a SALT student) - I couldn't even sit in on my own kids' ADOS and it would have been soooo interesting to do so from a professional point of view!

bubblegumunicorn · 21/10/2021 13:47

Woah you've just described me 🤭 right the way down to diagnosed dyslexic but feel like it's more no advice but you're definitely not alone!

Stickyblue1987 · 21/10/2021 14:06

Op, I assess adults and children for autism and would recommend that you seek assessment. Along with GP, contact your student support services at uni. Often they can support through assessment. Good luck

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