Autistic (undiagnosed or not) Adults Thread

[Guyyyyyzzzzzz]

You mean £1900, as in that being the amount charged for the assessment?

Sorry, yes.

 

[fusspot]

What does everyone do for work? I’m looking to branch out

I work in a general admin role. Luckily I only have to speak and interact with the few people I work with most of the time, because I find having to call people, or even speak to people outside of my team, incredibly and embarrassingly challenging

I was wondering; does anyone else have a partner who is on the spectrum at all?
I’ve seen definite traits in mine for many years and am struggling lately with how detached and almost robotic he can be at times.

 

[PinkBogeyBreath]

We’re somewhere in England, and what happens in our area is you’d ask the GP for a referral. Then if they are in agreement for making the referral to whoever they use for adult assessments (it’s often a private company that has the contract with the trust if they don’t have a specific assessment team), the next step is that the GP will have to apply for the funding for it (I can’t remember the exact name of it but it’s all through the nhs). It can take a while to hear back and when/if the funding is given the go ahead, you get added to the waiting list for an assessment. If you wanted to go private to speed up the process, you could see whether the company your nhs trust has a contract with does private assessments too. I’m not sure if it’s the same in all areas but I just wanted to share how it worked where we are so you’ve got another example of the how the process might work

 

[Millennial Pink]

This sounds like something I would enjoy. Do I need a computer science degree?

No, not necessarily, prior knowledge of whatever IT system you're working on is desirable.

 

[Guyyyyyzzzzzz]

I’ve been told two years mine was accepted officially a couple of weeks ago

 

[Sheabutter]

Sorry not career adviser proof reader was what I meant, lol.

Lol I was thinking it was odd advice. Like some sort of pyramid scheme haha.

 

[TwooTwooTwitTwitTwoo]

This thread couldn’t have come at a better time for me. A while back, I was reading somewhere about someone who’s child was being assessed for autism after experiencing what seemed to be anxiety for a long time and the signs were very familiar. I did some more reading on it and I think I could be autistic.

I have always had difficulty with socialising. I have a small group of good friends from childhood who I am OK with, and I am still in touch with people I went to uni with but spending time with them is exhausting and I feel like I don’t fit in. I don’t remember the last time I made any new friends and I can’t make small talk.

I struggle with noise at work. My office is usually quiet but if it’s at full capacity I find the noise unbearable but there’s only 8 people .

WhenI was a child, I developed odd habits which I had to do every night- for example, I had to look out of my window every night, and read a certain number of pages of my book. For a couple of years I would cry every single time it rained and would cover my ears.

The list goes on (I actually have a list saved in the notes on my phone!). I do suffer with anxiety, and whilst I don’t know if I would go down the route of diagnosis, it goes some way to explaining my behaviours and thought patterns since childhood that anxiety doesn’t.

edit: sorry for the essay! I haven’t told anyone about this yet so it’s good to get it down somewhere.

It's weird looking back sometimes isn't it. My parents took me to a homeopath to help my behaviour (which I now realise was hyperactivity and meltdowns). I developed what I think might have been OCD type behaviour after this. Everything in my room had to be in it's exact place before I went to bed (previously I was the opposite end of tidy) and I started 'touching wood', where I'd tap my head if I had a thought that I didn't want to happen. So lots of "touch wood they won't die" because I'd worried someone would get hurt in an accident or something, amongst other things.

It was really quite extreme at points, constant throughout the day about all sorts of stuff and was noticed by friends at the time, although I managed to pretend I didn't know what they were on about.

I also went through an odd period of time as a young child, maybe 9 or 10, where I'd pile all of my toys and belongings on my bed with me at night and pretend the bed would fly away.

As an even younger child, whenever I'd stay at my grandparents (who were wonderful people), I'd imagine my escape route if there was a fire but during this I'd bite and suck the inside of my lip until it ulcerated.

It's clear to me now that there was an enormous amount of underlying anxiety going on but I was just a ball of hyper energy, seemingly happy, so it wasn't recognised and I never thought to tell anyone because I didn't realise it was unusual.

 

[ElectricDreams]

I got tarred by this brush too. I think I may have had selective mutism or something. I was in a lot of situations where I had plenty to say, but just couldn't or didn't for some reason. I don't have this issue as an adult, although I wonder how much masking comes into it.

I also wonder how much personality psychology is confounded by people with ASD- how many 'introverts' are actually autistic?

Thinking about it, I was selectively mute at a very young age (preschool) I never spoke all day but could tell my mum every tiny detail of what happened when I got home! When I was older, I wouldn't speak in front of the class eg answering my name on the register, answering questions etc but was quite vocal with my friends or 1-2-1 with my teacher.

 

[freshhead]

New to the thread
I was just wondering how many of you that are undiagnosed and on the spectrum, are self employed and how you handle it?
Undiagnosed, not sure if I’m on the spectrum or not but do feel I have some common traits.
I have really good days running my little business (the past few have been amazing) but then others are really overwhelming, I can put some things down to being anxious, but I’m really conscious of how I’m talking, what I’m saying, I also find myself zoning out when working with clients and then I can’t remember what they’ve said to me? Anyone else?

 

[dancingqueen5678]

Does anyone else struggle with what feels like a rejection? There was an incident in one my uni seminars earlier on today and I made an official complaint but now I'm wondering if it was a bit of an overreaction and sensitivity on my part. Spoke to my personal tutor and he said that it was perfectly valid but it's not like much could really be done anyway in regards to the students in the class. The lecturer can be sorted out

 

[Guyyyyyzzzzzz]

Hi all. Just want to vent.
I'm suspecting that I might be autistic. There's just so many things that indicate towards that. I have had therapists in the past who have kind a nodded and said 'I thought so' when I had mentioned it. It's mind blowing to me that my whole life I thought that I was a weird, worthless, stupid, ugly etc. outsider, might be something that I can't actually do a lot about, because God knows over the years I have tried very hard to fit in and behave like everyone else. I just cannot seem to do socialising or making and maintaining friendships. I don't know if there's much point in trying to get a diagnosis because I'm tired from trying to get a doctor to take me seriously and they only seem to want to talk to me over the phone and I have a phone phobia, so it's difficult. I already had a conversation with a GP in the summer about my anxiety and they basically sent me some links so I could help myself and advised me to push through the fear. (I have been anxious since I was a child, so I don't think that was the best advice) I think I would absolutely die on the spot if I spoke to them and they dismissed me and told me I was being stupid and how can I think I'm autistic, how ridiculous. Which is what I tell myself but my life is pretty crap right now. I'm feeling fed up of being mentally ill and constantly having to fight it and then being ok for a few weeks and then I'll get into a funk again and have to haul myself out of it and repeats in the same loop. It feel like all the trauma from my past is threatening to swallow me up. Adding autism into the mix, I don't know, feels like it answers some of the ways that I am, that I'm always punishing myself for.
anyway, thanks to anyone who reads this far.

There’s a lot of people that, believe in self diagnosis it helps to heal them, I discussed with a doctor during another appointment she was lovely and made me feel safe so I shared my views.


She instantly booked me another appointment to go through the AQ-10. I scored 9. She referred me to the pathway, she was lovely, and explained that although there’s not enough research to suggest that autism is anything to do with genetics, the fact my children are autistic and from what she knows about me she believes I am autistic.

I had never felt so much relieve, I’m also adhd.

So if you feel comfortable with one dr I would suggest doing what I did

 

[shadowcat5]

I think my “meltdowns” are I get really focused on non-negotiable daily routines (cleaning house, gym, x, y, z) and when I don’t get to do them I’m overwhelmed and grumpy. I was running on empty today and was short then felt so guilty and it just ruins my weekend. Does anyone else turn into a crank? I feel like it’s harder to be this way when you’re a woman. I wish I could be more laidback but my mind is always going ten to the dozen. I calm down once I’ve done my routines but because I’m “high-functioning” people don’t get it.

I get this. I don’t like when plans are changed or something happens that throws me off. Example: I leave my house on time to get to work 5 minutes before I need to be there, but there’s unexpected roadworks outside work, I’m late, not late for work, just late for the time I like to be there by and now I’m irritable and start shutting down. Now I go into work and I am only able to utter a few words to people. I am fine after an hour with my headphones in, but I’m a lot less tolerant of things I could let go.

 

[Forallthoseasking]

I think my “meltdowns” are I get really focused on non-negotiable daily routines (cleaning house, gym, x, y, z) and when I don’t get to do them I’m overwhelmed and grumpy. I was running on empty today and was short then felt so guilty and it just ruins my weekend. Does anyone else turn into a crank? I feel like it’s harder to be this way when you’re a woman. I wish I could be more laidback but my mind is always going ten to the dozen. I calm down once I’ve done my routines but because I’m “high-functioning” people don’t get it.

I do this. If I don't get a certain set of things done in a weekend then I'm really down in energy and angry about it all week because I feel like I've failed somehow?
It might even be something random like ive not organised my wardrobe for the next season yet and something in my head has decided this is a non-negotiable

 

[Millais]

I haven’t driven for years as I moved to a major city with decent public transport to basically everywhere I needed to go, but I hated driving back when I did. I never understood why it caused me so much stress. Like several of you have said, I’d do the route on street view first on the odd occasion I went somewhere unfamiliar and I never even went on a motorway the entire three or so years that I drove. I think it was anxiety over being in charge of a massive killing machine (well Citroen C1) coupled with sensory overload - you’re constantly looking for people, vehicles, lights, signs, there’s noise, and it always felt like the whole world was just happening too fast if that makes sense? Not just in the sense that I was physically travelling at up to 70mph and reacting in real time. I still have a recurring dream where I’m driving a car and just like hitting things and going through red lights because I’m overwhelmed and can’t react in time. Bizarrely, a former coworker once told me that he’d dreamt that he was the passenger in a car where I was driving like this! I’d never told him about my dreams. Weird.

 

[dancingqueen5678]

Holy shit, this very accurately describes what it was like living with my dad.

I realised I was probably autistic this year, brought on by lockdown and how I was dealing with that. I'm not sure whether I'll go down the formal diagnosis route yet but there's no hurry.

I could bang on for ages about childhood stuff and how girls are often missed because this is still seen as a 'boy's thing' but I'll keep it brief.

My main issues are with eye contact (which I thought I was pretty good at, then lockdown happened and now I have to be aware of it CONSTANTLY), soft touch (I had no idea this was an autistic thing until I found a youtuber who mentioned it), noise, and the social side like making and keeping friends.

I didn't realise how much I masked or made accommodations for things unconsciously until I started learning more about autism.

Anyway, lovely to see a thread on here about it!

I recommend the YouTube Olivia Hops. When I was researching autism she came up on my YT recommendations and I related to literally every trait she listed

 

[Forallthoseasking]

Thanks all, I really appreciate it. Even just getting all that off my chest has helped a little, and @shadowcat5 I'm glad it's not just me!

I'll give the GP a call and go from there. I really didn't realise child and adult assessments were separate (though I also don't know why I didn't think that? Haha) so that is a relief

 

[Eeyore147]

A question for those who have been diagnosed- do you 100% need parental or otherwise involvement from people who knew you as a child? Due to circumstances I would struggle with that.

It isn’t essential but makes things easier if they have access to someone who knew you mainly during the first 5 years. It’s characteristics they are looking for. My mum was useless , but that’s why they do a variety of assessments to get a bigger picture. The main one is ADOS which is an observational one.

lots of luck xxx

 

[Eeyore147]

Sorry for the long, messy post but my head is fried and I don't know who to talk to about this

So I've got a lot of life experience with autism. My brother was diagnosed when he was a toddler in the 90s and went to special needs schools so we had a lot of family friends through that network with autistic kids. We have also been convinced for years that my mum is autistic after many "really? Is that not normal? But I was like that as a child?" moments during my brother's diagnosis but she has never seen the point in getting an assessment as she doesn't want to take a place from a person in real need.

During a teenage mental breakdown I went from pillar to post in CBT sessions as they concluded I wasn't "depressed" as I apparently "had too much fight in me for a clinically depressed person" but I was also suicidal so I had an elaborate mix of CBT/anger management and counselling all bundled up into a "we don't know what is wrong with you but if this helps?"
Eventually I did feel better but only after moving country for university and basically adapting to my own little life (and a lot of uni partying).
I've since built a career and done really well for myself. I've got an amazing partner who is better than I could have wished for. We moved in together right before covid hit.

Since living with him and with covid and life generally changing in every way possible, I've found it harder to mask those worries that I had kept at bay with my little way of doing things. I used to have "ipod time" as a teenager where I listened to emo music at full blast on my ipod nano whilst pacing the upstairs landing in the dark. My family understood this completely and would simply flick the light on when it was time for tea or whatever. In times of extreme stress, I still go back to ipod time as an adult. It is my ultimate comfort blanket. My partner tries to understand but doesn't quite get this and other things I do to calm. When talking to other people, they don't tend to either.

There's lots of other little things like this that I could list off but overall, the only people who seem to understand these traits are my family (1 confirmed autistic person and 1 highly suspected) and one of my colleagues, who was diagnosed with autism and ADHD a few years back after a mental breakdown very like the one I had over a decade ago.

This in addition to many articles etc that I am relating too way too much are now causing me brain fog with the "am I? Aren't I?" Thoughts. I would love to get diagnosed and find out if I am or not. I don't really care either option it would find to be honest, I just want clarity to stop my brain twisting things.

Does anyone know of any private referrals that are actually assessments and not a glorified online quiz? Like my mum, I don't want to take the place of a kid like my brother was who really needs it but I am anxious.

Thank you if you got this far

I’m in the England and Adult & Child Assessments are completely different so you certainly wouldn’t be taking the place of a child.

My son was diagnosed about 8 years ago (late for a child as we didn’t have the right support) I was diagnosed about 2 years ago. Both were NHS diagnosis and I waited over 2 years on the list. There are several processes to the assessment. It’s not made a huge difference to my life day to day, but it does help me understand the why?.

Have a word with your GP and ask for a referral.

Good luck xx

 

[Millennial Pink]

What does everyone do for work? I’m looking to branch out

IT systems improvement- loads of us are neurodivergent.

 

[abeautifullife]

I'm an autistic woman myself. So happy to see this thread!