Autistic (undiagnosed or not) Adults Thread

[Guyyyyyzzzzzz]

I had an appointment with my drs for a separate thing and I mentioned about the possibility of being ASD so I have an appointment at the end of the month

 

[Guyyyyyzzzzzz]

Hello, I though I’d update, I had the AQ-10 assessment and scored quite high which triggered a referral. I’m currently awaiting an appoint for assessment

 

[Sheabutter]

I don’t think I qualify as neurotypical mainly because I can’t detect when someone else is operating with guile. Also audio processing can be a pain and a half. I am always turning on closed captioning these days and it’s like hearing aids for a deaf person or glasses on a vision impaired baby. A lot of other things that I think could be symptoms could also just as easily be the outcome of a very strange and confusing childhood.

 

[maytoseptember]

How did I not know about this thread? Two autistic kids here, one autistic husband in denial (that’s my assessment anyway) and I’m totally convinced I’m autistic too.

I’ve been through all the stages of acceptance. In my early 30s I first did the AQ test, just for fun. I wanted to prove what I already knew - that I would score pretty high for autistic traits but not over the threshold for “maybe actually autistic”. The threshold is 30 IIRC? I was expecting to come in at the mid to high 20s. Imagine my horror when I scored something like 35

I didn’t take it well. I thought it was a load of crap and we were clearly pathologising normal personality traits if someone like me, a nerdy, obsessive, massively socially awkward person could actually score as autistic. Nope. There’s nothing wrong with me.

So I left it at that.

Several years later I had a toddler boy who wasn’t talking and my gut was telling me it might be autism. Spent a long time in the NHS system (who wanted to “watch and wait”) but when the paediatrician suggested we go on the waiting list for an autism assessment I had to revisit my own traits and this time I admitted to myself it could explain a lot about me. And, this sounds weird, but I felt a sense of relief wash over me. I hadn’t acknowledged up until that point how much self-hatred I’d been carrying around since I was a child. My whole life I’d mostly felt like an oddball who never quite fit in with anyone. I had very few friends who I kept at a distance and rarely saw. I always knew that people, on the whole, just didn’t warm to me. Suddenly I understood that maybe it wasn’t my fault?

Once my son got diagnosed I had to look again at my daughter. Again, my gut had told me that she wasn’t like her peers from quite a young age, but no one else in the family agreed with me. Teachers never had any concerns either. But I knew something was up. I started researching autism in girls and saw her - and me - reflected back. She got diagnosed a year after her younger brother.

I’m thinking of going down the private route because I just can’t face having to justify myself to a GP and then potentially get rejected on the basis of being too articulate and being married with kids.

I used to think there was no point getting myself diagnosed but the older I get the most autistic I seem to be? Covid has obviously exacerbated my traits as well, so it’s hard to know what is behind it all.

Noooo not at all, just I’m aware people doctor shop until they get the answer they want… Also I think going in as a functioning white woman with other privileges saying I think I have x to the extent where I’m paying £1,900 to confirm that they’re more inclined to just agree with me than to thoroughly investigate the reality, as they would if it was NHS.

Sorry, I realise this is an old post I don’t think that’s entirely fair. A woman who has spent years considering the possibility that she might be autistic is far more likely to present for a private assessment than someone who is unsure. Because who would waste that kind of money is they weren’t absolutely convinced? Private clinics also screen people before taking their money and putting them forward for assessment, because that’s the only ethical way to do it. What’s to be gained from getting a diagnosis of autism when you know you’re not?

 

[maytoseptember]

Eye contact has always been a big issue with me. I can barely make eye contact with my own family. I get hugely embarrassed by it because I know people notice, and I do try to work on it.
I’ve never really thought about sensory overload before but I hate the tv or radio to be too loud, and I can’t bear when the tv is on and there’s a radio on in another room.
Someone mentioned earlier that people don’t warm to them. I’ve always felt like this, for as long as I can remember. I think no matter how hard I try, I come across as stand offish. Like I put up barriers without realising I’m doing it.
I honestly feel so relieved to have found this thread.

I remember doing a CPD course at work in my 20s and having to do some sort of role play “interview” or some nonsense (which is enough to make me want the ground to open up and swallow me whole as it is) and getting the feedback that I wasn’t making eye contact much I had no idea then! I used to just berate myself for being crap at life.

I won’t force it anymore, and I won’t force my kids either because I know how it feels. This is why diagnosis is important. At least you can say (if you’re comfortable and it’s the right context) “I’m autistic and eye contact is difficult for me, but I promise I’m listening if I’m looking away - if anything I’m listening better!”

I mean why is eye contact so important anyway? It’s just a neurotypical norm.

Yes to coming across as stand offfish. Again, as I’ve got older and started to understand myself better, I just don’t care anymore But I’m a stay at home mum (avoiding going back to work because the social demands of having a job, and the executive function demands of juggling kids, a home and work is honestly too much for me, embarrassing as that sounds) so I can deliberately make my life pretty small and I’m happy with that.

 

[Sheabutter]

I took the AQ test that someone up thread mentioned and it came back as lightly Aspergers. Nothing very shocking. I come from a long line of engineers; it’s what they’re famous for lol. So that’s why I’m here… also to share a book recommendation and some back story: I opened up to my brother about my anxiety around feeling different to other people and not wanting the same things other people want like a boyfriend, husband or kids. He eventually came back with a book recommendation that was ultimately so positive and reassuring. I feel so much better having read it. Anyone else that ever felt guilty for marching to the beat of their own drum, specifically avoiding the minefield of traditional relationships, I recommend reading Convenience Store Woman by Sayaka Murata. It’s a short, excellent read.

 

[ElectricDreams]

It's interesting that an assessment as an adult needs parental involvement. Surely for people who's parents are no longer with us then there must be a way around it, so I don't see why they can't proceed without parental involvement?

As a teenager I spent a number of years under what would probably be closed as CAHMS now. I saw a child psychologist and spent some time as at a Child and Adolescent Mental Health unit as a day case and attended support groups. At the time I had a diagnosis of depression, I was struggling to fit in socially at school and had some anxiety / obsessive behaviours. Looking back now I suspect I actually have autism and I would love to be able to see my notes and ask if Autism was ever a consideration. This was 1995, so I don't think it ever was, especially as I am female and it is often undiagnosed for a lot longer. I think if it had been considered, my teenage years and my early 20s might have gone a lot differently!

 

[String of Hearts]

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

Have you ever looked into rejection sensitive dysphoria? It is the absolute worst, but understanding it and knowing how it makes you feel does take the edge off

 

[Millennial Pink]

That the screaming rows I had with my mum (who I now realise is also probably autistic) were an outlet of someone who didn't have a safe space. At school I masked, at home I was hyper on edge, ready to detect the slightest hint of meltdown from my mum. I can still forensically read a room full of people as soon as I walk in.

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!

 

[Abby lockhart]

This thread couldn’t have come at a better time. My friend approached me yesterday with concerns my daughter has something developmental going on, maybe Asd. She’s a bit controlling,throws whooped tantrums screams and has a few quirks but they go as quick as the appear

Anyway obviously I went down a rabbit hole reading articles and my god so much cuts so close to the bone.
I dread some
Social gatherings , although not all, I have a few close friends , I’m not great at small talk; I’ve had episodes of anxiety during big changes like starting secondary school, starting college x2 , spent the day today wondering if I actually make eye contact with ppl!

 

[dancingqueen5678]

Thank you for all replying! I didn't think anyone would

Hi I am not diagnosed but it's something I looked into before being diagnosed with ADHD back in Feb. However it still plays on my mind so I might try and save for a private assessment.

I mainly have difficulties with social situations, I can just about cope at work but it feels forced and like I'm acting so it's quite exhausting

I have the same issue. So in work I'm not so anxious cause I feel like I know the "rules". I know customer service and I know professional relationships but I can't manage outside of work. I can't go on work nights out cause I don't know the rules then. I also find the environment of work a struggle. It's bright, it's noisy, the uniform is uncomfortable. At the end of the shift I feel like I cannot speak at all.

I am absolutely useless with my peers. I just go mute a lot of the time and feels like the words are stuck in my throat.

 

[Jdottt13]

I can relate to a lot of what has been said on here.
I’m a mid twenties female and I think it’s just dawned on me that I’ve been masking in almost every situation outside of my home environment for as long as I can remember - mainly social situations with people I am unfamiliar with. And I never feel truly relaxed anywhere else but home. Although maybe it could just be bad anxiety
I would say that no one really sees the “real” me except for my mum, partner and my children.
I find eye contact difficult, also small talk is my absolute nightmare most of the time and I never ever fitted in at school until I got to sixth form and made friends although I always felt inferior to them.
Looking back I did have some particular rituals as a kid. I also think I stim (self stimulatory behaviour) I twirl my hair in any anxious situation and I find it calming There’s probably other things I do/have done too but can’t pinpoint.

My younger half siblings are autistic and they are doing genetic testing so will be interesting to see how that comes back.

edited to add- my whole duration of nursery school I never said a single word and it’s one of my first memories I have is a teacher getting frustrated because I wouldn’t answer my name on the register 🥲 I guess back in the 90s it wasn’t maybe such a thing and I was probably labelled as being extremely shy.

sorry for the essay

 

[Eeyore147]

I was diagnosed at 39. I wasn’t fussed about it but my Psychiatrist and Psychologist have been convinced for years and pushed for me to be assessed. - (also have EUPD) I didn’t see what difference it could make at my age but it does help explain certain quirks etc. and how much I mask symptoms to fit it. Mine was NHS and took about 2 years. There are lots of questionnaires, interviews and an observation with both myself and my parents. I don’t tell people about it as it doesn’t change who I am, but does help me understand myself better. My son also has ASD and was diagnosed at age 7.

 

[Dolly Daydreaming]

Hi I'm in my 30s and this year been diagnosed with ASD on nhs, waited 3 years. Paid private and was diagnosed with ADHD, waiting list in Merseyside was 5-7 years lol. It's been a roller coaster of emotions with the diagnoses, a confirmation that I'm not 'strange, weird' or any other derogatory comments about my way of being, etc etc

 

[no-no]

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.

 

[Bettyboo2475]

Just realised that I am autistic. I’m 46 and was in process of getting my 4 year old diagnosed and ended up finding I fit the criteria.
Really don’t know where to start.

 

[dancingqueen5678]

Following with interest. I think me & one of my sisters are, our brother was officially diagnosed in school (amongst other things).

I’m reluctant to get a diagnosis as I strongly suspect it’s a self fulfilling thing & there must be doctors that would tell you you had 3 heads if you asked them to. Also not sure what value a diagnosis would give (for me, this is v situation dependent!) other than confirmation of something I suspect…?

Idk how private works but with NHS you have to see your doctor, they refer you to the community psych nurse who then refers you to a psychiatrist and any one of those can say no so I don’t think it’s self fulfilling in that sense and for women and girls it’s a lot harder as they still use the old criteria used to diagnose boys way back in the day.
Unless you mean self fulfilling like you see symptoms then equate them to your life even if you don’t have it?
I personally don’t think that’s true. mostly cause plenty of people say that once they understand/get diagnosed/research they become “more autistic/adhd/BPD” but that’s not true. It’s just a new awareness of cause and effect.

 

[ElectricDreams]

I feel like I could’ve written this.

I’ve always felt “different” for as long as I can remember. It wasn’t until I had my sons (both are diagnosed autistic) and learnt more about autism that I started to recognise traits in myself - especially when I think back to my childhood. I was always dismissed as being the shy girl but I knew it was more than that. I can’t ever remember a time when I wasn’t anxious. I struggle to make friends (I’ve had them, but I’ve never been great at keeping them and tend to only have acquaintances these days ).

I was a very picky eater as a child and teenager, and would only eat “safe” foods much like my sons just now. I hated the feel of certain materials/clothes but had little choice but to wear them as my mum said I was just being awkward. I couldn’t stand having my nails trimmed. I was a very early talker/reader/writer and never struggled in these areas. I was obsessed with imaginative play and quite rigid in my likes and dislikes. If I loved something I didn’t stop talking about it. I collect random facts too and have a very good long-term memory. I hate crowds and still get overwhelmed in shopping centres and busy supermarkets to the point of feeling dizzy and like I could scream. I hate loud, repetitive noises, they seem to rub me up the wrong way. I can come across quite blunt and cold without meaning to.

I was diagnosed with depression in my late teens/early 20’s but know it goes back much further than this. I’ve held down jobs and have a good work ethic but have also had a lot of anxiety over these and as mentioned before, I felt like I was playing at being someone else a lot of the time. I’m dreadful at small talk and struggle to keep a conversation going. I know that autism presents differently in girls than it does boys and basically I feel that I’ve been masking my entire life.

There’s no real point to this post as I don’t intend on seeking out a diagnosis - I don’t see how it’ll help me now, I’m in my 30’s, married, with children. I’ve managed to wing my way through life so far. It’s just interesting to read everyone’s posts as I feel I can relate to a lot of them. I also think that autism is genetic in my family.

This is me to a tee! Thinking back I always had (and still do have) issues with shoes rather than clothes. My feet are very sensitive and I can't bear anything tight or heeled.

I was brilliant at writing stories and imaginitive play but only on my own. I would get frustrated if I played with others as I didn't know how to take it beyond what was in my own head.

I was labelled as shy by my teachers but I wouldn't say it's shyness... In the right company and in certain situations I'm actually quite outgoing.

I always felt different too, in a way I could never put my finger on. I did things I didn't really feel comfortable doing as it was easier to try and fit in than explain why I didn't want to do it. As I got older and learnt that I could say no to things I didn't feel comfortable with, like going out drinking etc I found people respected me for that and it got easier to do.

 

[no-no]

I’m diagnosed and never disclose. But my god it is hard to mask Being treated as the shy one or closed-book is the best you can hope for sometimes. It’s like you’re not working with the same tools so the usual self-help solutions don’t click. How can you focus on things in the room beginning with the letter ‘k’ when your brain feels like it’s spinning on its axis. I’m going to check out an ASD support group this week

I do think it’s important to get a diagnosis. Waiting lists are long and a lot of us had to sit it out for years, but I’d never label myself something without a diagnosis.

 

[LennyBriscoe]

Hello, just stumbled across this thread and feel like I can, in part, relate. My son is autistic and since his diagnosis, I’ve had a niggling suspicion that I am too. I could identify with the social anxiety (fine with close friends but other than that, I’m thinking when I can leave, what if I don’t have anything to speak about) and the overthinking to the enth degree and not thinking in the same way as other people. But one word jumped out at me….draining. I feel like that a lot.

I appreciated what you said @dancingqueen5678 about the childhood trauma. I think there are experiences in my life that are possibly intertwined to autism or my way of coping with what had happened is in some way. I accept also that I’m alcoholic and that would be the case whatever but I can certainly see a real, obvious drinking too much in the early days just to feel like everyone else.

I genuinely didn’t intend to turn this into an essay about myself, I wanted to talk about support in the workplace. I work in the Civil Service and I’m what’s called an “Autism Ambassador” which is a totally voluntary thing but what I’ve learned we have is a Workplace Adjustment Passport (they insist on calling it WAP so I’m always sniggering, the juvenile that I am) and this is designed to help people who need assistance to help us in our work. Our one you don’t have to be diagnosed but it is better utilised if you feel you can be honest with your employer about how you feel (I appreciate that may be difficult.) I would recommend looking into it.

@heretoreaditall2019 I’m genuinely not following you around, piggy backing on all your posts!!

Thank you all for your honesty