Autistic (undiagnosed or not) Adults Thread

[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.

 

[goodgod]

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.

 

[BiffasBeemer]

Hi all!

I am 46 and recently had another bout of Counselling- however this time my counsellor was autistic. Anyway during our sessions he noticed I had a lot of traits from the autism spectrum and we explored these and it appears I have a lot of them.
I was referred to the local "Autism Hub" and have done the initial screening and they have put me on the waiting list for a full assessment - sadly could be up to 2 years!

I am a bit relieved to be honest, I have always felt different, isolated, couldnt understand how other people dealt with things easier than me and always felt misunderstood.

Will sit and properly read through this thread now - just wanted to say hello!

Some of my recent issues are about not being able to get what I need when shopping.

I have certain products, I have the same meal every day and if something is out of stock I go into a huge panic, have even cried in the supermarket as I go blank and dont know what to do! I sometimes buy alternatives but they seem to just mess up my meal!

I have problems socially, either I vanish into the background or turn hyper and think its my job to make everyone laugh and not have awkward silences. I get bored easily and can just zone out or walk off, and am so impatient i finish sentences for people. As you can tell a lot of people struggle to deal with me which makes me more anxious socially.

Clothing drives me mad, cant wear things that are tight or itchy - havent worn any type of bra for about 10 years as they feel like they are crushing me.

Cant stand noises, vibrations, smells and I get the overload when too much is going on. I cant focus on say one person talking if a car goes past, all I can hear is that car.

I have had a lot of trauma in the past 5 years plus am going through the menopause so I think they want to make sure there isnt something else going on, but to be honest I have had most of this since I was a child, the fussy eating especially.

Someone mentioned about researching places you are visiting - I do that, where can I park, where are the loos etc etc.

For all my life I have felt there is something wrong with me, I am not doing life right - whereas now it feels better to know I am just wired differently, say an Apple Mac in a world of Windows PCs. Neither are wrong or faulty but they both process things differently.

Sorry to ramble on!

After reading the whole thread - it seems very common that we all had depression in our lives, mine started in my teens.

I think we must all start to feel different then - especially during puberty when our sense of self, comparisons to others and general kids being dicks to each other sort of makes us feel more isolated and "not normal".

I bet the majority of us our depression was down to that - it such a struggle 24-7 to be analysing, beating yourself up, worrying - it absolutely exhausts me. I suspect when life continues to keep throwing stuff at us we feel we cant deal with we seem to doubt ourselves more and end up spiralling into depression. We see everyone else around us seeming to cope easily with stuff we find upsetting and obviously will blame ourselves for not coping?

I have been on anti-depressants since my teens, and had many bouts of counselling and now my brain is just starting to make sense. It is almost a relief to me.

 

[TwooTwooTwitTwitTwoo]

Quietly creeping onto this thread. I have one or two (or three ) autistic children (two also have ADHD). The other two are likely autistic too, just less obviously. By which I mean, doing brilliantly at school but not so well emotionally (don't worry we are keeping an eye on it).

During the first one's assessment I thought maybe I had some ADHD traits. During the second's assessment I realised I definitely had ADHD traits. The third one is more like his dad who I'd thought was autistic for years. Fancy that .

I spent the whole of my secondary education being told I wasn't trying, that I was capable of more. Not helped by having had an IQ test which I was then meant to live up to. I came away with very average GCSE's.

I did excel years later doing degrees in a subject that I'd always been really interested in. I was then plagued with years of ill health, some of which affected me cognitively.

I'd stopped having full on meltdowns in my late teens/very early twenties but after I was ill I found they came back. My whole personality changed. I used to be very confident and outgoing, a definite extrovert and now I'm almost the complete opposite. I struggled during this time with eye contact and I'm still not 'back to normal'. I miss who I was.

I've realised that traits I'd thought were helpful and positive were actually just masking. 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.

Sorry, this is really long . Obviously there is lots more to it but it's taken me such a long time to properly realise.

 

[AdelesEarring]

Me I was diagnosed as an adult. I also have two diagnosed children.

The strangest thing for me was realising that lockdown is like my regular life because I so rarely socialise

Although people often express concerns about ‘labelling’, the alternative is for you (general) to go through life with people expecting you to behave NT, and treating you badly if you can’t. A diagnosis protects from this to some extent and also helps to understand what you can do to make life easier for yourself.

My ex-partner (and youngest daughters dad) still won’t accept my autism and is incredibly ableist and I hate it. No matter how much I explain things to him like my lack of theory of mind, he quite simply refuses to take it on board.

I had a period in my life Of severe MH issues and even hospital admissions but since I was diagnosed, I’ve been able to understand my limitations better and also what pushes me over the edge.

 

[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!!!

 

[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.

 

[Youre a wizard Harry]

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.

 

[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.

 

[dancingqueen5678]

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!

if it helps, I make 'eye contact' but I find it really uncomfortable so I always try and distract myself. Realistically though, I make eye contact cause I was told as a kids that it's the thing to do. It's not something I do naturally and I have to actually think about making eye contact cause I won't otherwise

 

[veevee04]

My diagnosis was a lucky chance. I work predominantly in learning disability nursing with autistic people. I've always loved working with people with autism. One of my colleagues noticed I did hand flapping and noticed other traits so I was tested. It's answered a lot of questions I had , my childhood I preferred to play alone walking up and down my garden path with my pram or talking to the gnomes in my garden. I had little interest in playing with other children. My mum said I was such a contented child happy in my own company . It's only when I moved school it became a problem I was a freak for wanting to play alone. I spent my entire childhood and early adulthood trying to mask and fit in. I couldn't find a job that was right for me either

My diagnosis has answered a lot of questions I had . I don't feel the need to mask as much either.

 

[Tireesix]

I'm waiting for assessment.

A counsellor, then GP and then mental health nurse all hit agreement this year when I hit burnout after spending years trying to be 'normal'.

Currently non-functional, I mean I am, but I'm not.

I'm still learning that it is in fact not normal for everyone to hear electricity etc.

Finally went to optician the other day for sight problems, he said my eyes are perfectly fine, it's a sensory issue (I'm light sensitive).

List goes on and on and on and the docs kept trying to diagnose me with everything under the sun whilst ignoring the fact that it started from birth.

I have the most amazing meltdowns that are so humiliating and the only way to get me out of it is to get me home, shove me through my door and leave me alone for 24 hours.

Anyway, autism is in my family, apparently my having EDS means that I am more likely to have it anyway, I just wish they'd sorted it sooner but, I'm female so I was screwed to begin with diagnosis wise, my brother had no problem.

 

[unidentified]

I have been single for a very very long time. My mental health is better when I am single. Yeah, I do get a bit lonely at times but I find my mind spirals more out of control if I am in a relationship. I am always second guessing everything and there’s always change which makes things harder to handle.

 

[lauraloves]

I was diagnosed with what used to be called Asperger's Syndrome (the name is being phased out now for just ASD) at the age of 12. I'm now 26. The diagnosis had a hugely positive outcome for me, as at the time I was in a mainstream school where I couldn't cope, so once I received my diagnosis, I got a place in an autism base in a mainstream school. It was life-changing because I finally could attend school again and made friends who were in the same boat as me.

 

[dancingqueen5678]

Wondering if there are any autistic people on here or people who think they might be autistic that want to chat about experiences and difficulties. I guess like a vent thread?

 

[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.

 

[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

 

[shadowcat5]

Oh I could never cope without a sat nav Although ours has an annoying habit of sending us wrong right at the end of the journey, which is one more thing to panic about.

Hadn’t occurred to me about doing a dry run. It would be a two hour round trip and I’d probably be too anxious to drive into the city centre for a coffee to break up the journey (I mean where would I park? I would usually be too embarrassed to discuss my driving anxiety but in this context, it’s relevant!)

If I could convince husband and two kids that we could all go to the city for a trip (and to find the place I needed to go) that might work, but they’re both autistic and hate leaving the house and long car journeys respectively, so that won’t be possible. FML

What I do in this circumstance is go on google maps and use the little yellow man to look at the street it's on. Sounds a bit weird but it feels more familiar for me then cause I recognise it

 

[thatstupidcat]

I just wanted to chime in that my brother didn’t receive his ASD diagnosis until he was in his late thirties and I just wanted to say he said it helped him put into perspective why he was falling behind his friends’ social “milestones” such as moving out, marrying and having kids. It took a great deal of pressure off him (he’d fall into negative spirals as he didn’t conform to what others were doing) and it meant that his employers were able to reframe him from being “tactless and rude” to being “protocol driven and direct”.

His only real challenge is that his mental health problems were written off by NHS mental health and crisis teams as symptomatic of ASD which has meant he has been on the hook for private prescriptions for medication and therapy. He doesn’t regret the diagnosis but it’s worth considering any consequences if you share it with other professionals.

His diagnosis also helped me understand my preverbal grandson and share information with his parents (my son and daughter in law) which helped speed along getting him some help too.

I have nothing but hugs for everyone on this thread - just remember you are remarkable and not alone

 

[String of Hearts]

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