Autistic (undiagnosed or not) Adults Thread

[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.

 

[Roastielover]

I have an adhd test coming up soon, if anyone has had one please can you let me know what happens as I’m starting to get quite nervous about it!

 

[ElectricDreams]

I strongly suspect that I have ASD. I had a relatively uneventful time at primary school, I had friends, however I had to go home for my lunch every day because looking back I couldn't cope with the social side of lunch time and I was a very poor eater.

I found secondary school very hard. It was a big school and I really struggled to make friends outside of the few I had from primary. My social skills weren't great, I was quite anxious and fixated on certain subjects. I was diagnosed with depression at 13 and referred to the children's mental health team. I had a brilliant teacher who mentored me for 3 years and is pretty much the reason I was able to stay in school and finish my GCSEs.

It wasn't until I was doing my foundation degree when I was in my late 20s that I came across a book called "Martian in the playground" as part of a module on SEN in children and everything just seemed to fall into place. It basically described my feelings and experiences as a child. I would love to know if ASD was ever suspected in me, but it was the mid to late 90s so I suspect not. I think the depression stemmed from me not understanding why I felt the way I did in school and social situations.

I'm now almost 40. I've never pursued a diagnosis because I don't know how it would benefit me now. I felt like once I realised that I might have ASD, I found a kind of peace within myself. I have had periods of depression over the years but nothing bad enough to warrant medication since I was in my 20s.

I still struggle in social situations. I don't have many friends, mainly acquaintances and when I know I'm going to see them, I try to rehearse the small talk I think I might need. I find social situations exhausting and stressful so I try to avoid things like parties unless I have someone with me to help me. I get fixated on things whether it be a new hobby or a craft which I master then do to death before moving on, or learning every little fact about a TV show. I also struggle with work. I've been self employed for 10 years which has suited me better than being an employee. I find it exhausting though, like I'm performing as someone else when I'm at work, being confident and in control when really I feel the exact opposite. In in the process of giving this up to try something a bit less stressful.

I still live with my parents which is a huge bugbear but I don't know if I'd cope living alone. I'm in a long term relationship with someone who I suspect has ASD too, though he doesn't seem to struggle as much as me.

 

[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

 

[JoeBloggs]

My mum and I have strongly suspected my dad is autistic to some level and I am now wondering if I am too. I have always found socialising hard, but was always told I was just shy and then as an adult socially anxious. I struggle with social situations and my partner says I do not react emotionally as I 'should', because in my head I don't know what I should be doing. I strongly suspect my partner has ADHD, his mum has just been diagnosed in her 50s.

I am not overly fussed at being diagnosed, I was diagnosed with dyslexia in my 20s as it was undetected due to masking and learning to cope alone. Not really sure on my point of this post but I wanted to get my thoughts out somewhere as I haven't mentioned this to anyone.

 

[LittleMy]

I strongly suspect that I have ASD. I had a relatively uneventful time at primary school, I had friends, however I had to go home for my lunch every day because looking back I couldn't cope with the social side of lunch time and I was a very poor eater.

I found secondary school very hard. It was a big school and I really struggled to make friends outside of the few I had from primary. My social skills weren't great, I was quite anxious and fixated on certain subjects. I was diagnosed with depression at 13 and referred to the children's mental health team. I had a brilliant teacher who mentored me for 3 years and is pretty much the reason I was able to stay in school and finish my GCSEs.

It wasn't until I was doing my foundation degree when I was in my late 20s that I came across a book called "Martian in the playground" as part of a module on SEN in children and everything just seemed to fall into place. It basically described my feelings and experiences as a child. I would love to know if ASD was ever suspected in me, but it was the mid to late 90s so I suspect not. I think the depression stemmed from me not understanding why I felt the way I did in school and social situations.

I'm now almost 40. I've never pursued a diagnosis because I don't know how it would benefit me now. I felt like once I realised that I might have ASD, I found a kind of peace within myself. I have had periods of depression over the years but nothing bad enough to warrant medication since I was in my 20s.

I still struggle in social situations. I don't have many friends, mainly acquaintances and when I know I'm going to see them, I try to rehearse the small talk I think I might need. I find social situations exhausting and stressful so I try to avoid things like parties unless I have someone with me to help me. I get fixated on things whether it be a new hobby or a craft which I master then do to death before moving on, or learning every little fact about a TV show. I also struggle with work. I've been self employed for 10 years which has suited me better than being an employee. I find it exhausting though, like I'm performing as someone else when I'm at work, being confident and in control when really I feel the exact opposite. In in the process of giving this up to try something a bit less stressful.

I still live with my parents which is a huge bugbear but I don't know if I'd cope living alone. I'm in a long term relationship with someone who I suspect has ASD too, though he doesn't seem to struggle as much as me.

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.

 

[JoeBloggs]

Reading your post @LittleMy has resonated with my completely.

I have always had a very limited diet, I wouldn't say safe foods but I have very sensitive taste and smell and I find some textures unbearable. As I have got older I have found crowds harder and harder which everyone put down to anxiety and shyness. I hated having my hair brushed as a child, it was so painful. I was an early talker but a late walker. I hate loud noises, the cinema is not an enjoyable experience for me. My husband likes to nibble his nails and whistle and this grates on my beyond belief and he just doesn't get it.

I always remember being told I was rude when I was a teenager, I was very shy and struggled to speak to people and would be quite blunt without meaning too.

 

[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.

 

[Millennial Pink]

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 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?

 

[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.

 

[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.

 

[Millennial Pink]

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.

 

[Apple In My Pie]

I have always suspected I am autistic. I have other disabilities and my quirks tended to be overlooked or hand waved by my parents as ‘oh it’s because you have cerebral palsy’ etc. I could never cope with loud noises (crying in the cinema and on firework night was a regular occurrence for me). Ate well as a kid but ALWAYS knew whenever someone was trying to swap out my favourite food for a new brand and would fixate on certain foods (still do now). I talked better with adults than other children my age at primary school and I always felt a bit like I had to ‘learn’ to be a child, I played very well when alone but if other children wanted me to be in their game i had to observe what they were doing and copy them - something which I still do socially now. Can’t cope socially at all, have no idea how to talk to people. The only time it was ever discussed was when I was doing my a-levels when my lecturer asked if I was autistic and looked alarmed when I was like, ‘um, no?’ ‘I think you are’ was the answer

I struggle with routine, I have to do the same sorts of things each day and eat the same sorts of food. I don’t mind if my routine changes but only if I know well in advance or if I pre-empt it myself iygwim. I seem to build up an idea of the day - I will wear these clothes, go here, eat this, and if my day doesn’t go to plan it really upsets me I feel like as I’ve gotten to adulthood ive fallen behind, I don’t know how to be an adult at all. It’s like I was mature as a kid but only up to a certain age.

My niece has recently been diagnosed and the more we learn about her and the way her autism affects her the more it resonates with me. A part of me feels really sad because it was just something that no one ever picked up on for me and I think partly that’s why my MH is shot to pieces but another part of me just doesn’t want to open that can of worms

Sorry for the essay!!!

 

[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

 

[sassylash]

wow, i have inattentive and impulsive adhd, but i reading through this i’m thinking is this also an autism thing too? or sensory processing disorder…
- i hate the feeling of certain textures (clothing/sofas etc) they make me feel ill
- rarely do i look people in the eyes (i always look at teeth)
- certain food textures, or certain foods. in school —when i was on packed lunch i alternated between thee same 3 sandwiches on a weekly basis, i did not eat anything else still go this day
- but… i need to listen to things loud loud loud
- i am definitely impulsive but i also need to do things in the exact same way, or i forget things and also get distracted and frustrated and quite anxious
- i don’t ‘read’ the room i say it how it is, everyone always says your so sarcastic but i’m literally not trying to be? apparently i’m very blunt
- finding it hard to say how i feel
- i take things literally if u say ur going to do something & you don’t? all hell breaks loose
- i need to know how things work i need to know the concept
- omggggg yes not giving people personal space omg me me me
- my smell is honestly on 100%
- i notice things people don’t for example when a colleague dyes their hair from dark brown to black and usually get the response wow no one else ever notices
- i hate the feeling of rain on my clothing. it makes. my teeth. grind. it will ruin my whole day
- hate certain socks, again will ruin my day
- i get very interested in things, but loose interest very fast although i think that is my adhd
can’t think of anything else but seriously considering my GP now

 

[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

 

[Here for gossip]

Am a 32 year old single mother who with a five year old son who is under assignment, I have always felt different my whole life compared to people my own age, I don't enjoy socializing I find it extremely awkward and never know what to say to people face to face, I like being on my own alot I enjoy my own company I have never been able to maintain friendships or realtionships I don't actually know how to have a relationship with anyone, I have recently discovered I have been masking myself my whole life I try so hard to fit in and never feel true to myself which has made me very depressed I honestly feel mentally drained as I feel like I haven't lived my true life as very confused of who I am as a person and find it hard to know why am so different a few I know think I have Austim I have never went for a referral but I think the time has come to do so as I would like to have some closure as to why I am the way I am

 

[Eeyore147]

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

Wishing you lots of luck and I hope the wait isn’t long.

 

[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

 

[ElectricDreams]

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

I refused to answer the register too, but I did speak to the teacher 1-2-1. I just wouldn't speak in front of the class. I remember being about 7 and the teacher taking me to one side and begging me to answer the register. We rehearsed it loads of times and that afternoon I did it... And 30 little heads all swiveled in my direction because they'd never heard me speak out in class before. I was mortified, but I always answered after that day.

Years later at high school I had issues reading in front of the class in English. I would refuse to take a part if we were reading a play to the point where my teacher would have silent conversations with me while the rest of the class was reading, trying to convince me to take a part that only had one word out a short line I would usually agree them sit there full of anxiety waiting for my turn to come around. I think both teachers thought they were doing me a favour, but it traumatised me to the point I still think about it 30 years later.