Autistic (undiagnosed or not) Adults Thread

[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.

 

[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?

 

[Rockin' Robin]

I'm not sure, I certainly have some characteristics. I feel very awkward in social situations, I find it difficult to make eye contact with people I don't know. I struggle to fit in, especially in the job I'm doing.

 

[Guyyyyyzzzzzz]

Hey hope everyone is ok! I still haven’t heard anything back from the assessment place. But I managed to get a telephone number so I’m going to pluck up the courage on what to say.

 

[maytoseptember]

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.

OMG yes. There’s a reason why we ended up together and there’s a reason why our kids are autistic too. He isn’t prepared to face up to it though. His father is also blatantly autistic.

 

[dancingqueen5678]

That’s very true, half notes that as I typed it. Are there good reputable resources or website. I find so much info and it varies but I wonder about the sources. I know it’s a complex issue but I find it hard to know what’s fairly normal but maybe not to everyone versus what’s a real symptom

if you google autism in girls, a lot of articles come up about it. There's one by the Autism and Aspergers network (https://www.aane.org/women-asperger-profiles/)
To be honest, I read a lot of them and related but the main thing that solidified it for me was seeing videos put out by autistic women on YouTube. One of them was something like "10 signs of autism I had as a kid" and the whole video I was like "Yes, yes, yes, yes".

I think the difference between normal vs a symptom is the reaction. Everyone has idiosyncrasies but it's how those affect you? like most people can live normally if their routine is disrupted, they'll be frustrated but it's okay, whereas I get really stressed and anxious if my routine is disrupted and I will be emotional, angry, can't focus, berating myself and everything else. Like it's such a strong reaction compared to someone else who would be like "well that's annoying".
I could talk for hours about it. I remember once before I was diagnosed, I was telling a friend how stressful I found nightclubs and the day after I was basically down and out like I had a hangover despite not drinking at all and she said that the day after she would get really tired and it was probably that but I knew that it was tiredness. It was more like I couldn't function. Couldn't speak, couldn't focus, would be anxious and on edge. Now I understand that I was sensory overload and that's why I felt so rough the next day.

I could go on forever about things that other people seemingly deal with that I struggle with.

Hello! I’m not diagnosed but I think my daughter is ASD and I see a lot of her in myself and completely understand where she’s coming from….if that makes sense

that makes complete sense! I think that is true for a lot of women in adulthood.

My friends think I have autism. I have struggled for a long time but I just always assumed that’s who I was but I get told I’m not normal all the time, I think it’s got worse since lockdown.

When I have done those online tests they come back as highly likely but I feel silly approaching a doctor about it.

I was the same way. All my friends would just know me as someone who was different and it was obvious there were things about me that were different to them. I also think I got worse in lockdown. I lived alone abroad and then came home to live with my parents again and that really was difficult. I don't think I realised how much other people upset me with things they do unknowingly (like noises, certain foods, etc) until I got back

 

[ameliaprimrose]

A few years ago I read an article about a woman being diagnosed with autism as an adult and a lot of it resonated with me, and I did a lot more research and I suspect that I could be autistic. For a long time I haven't been sure whether it's worth trying to get an assessment, but over the last few months some things have changed and I've started to feel more and more like having a diagnosis would help me. I've been feeling more and more like I need accommodations/support at work lately, but I don't want to outright say "I'm autistic so I need these accommodations" when I don't have an official diagnosis, and I feel like I can't properly explain my struggles otherwise.

But to be honest I'm sort of put off by the fact that even as an adult, you need to get your parents involved in the assessment. I know they need to find out about what you were like as a child, but I'm just not looking forward to having to tell my parents about it. I can just see them being like "you can't be autistic, if you were we would have known when you were little, you seem fine to us" or something.

And another thing is, if I did go for an assessment I'd have to decide whether to go through the NHS or to go private. Do I want to spend potentially 2 or 3 years on an NHS waiting list, waiting to find out for sure? On the other hand, obviously there's the money aspect of going private, but I also worry about the fact that people might not take a private diagnosis as seriously as an NHS one, and people would think that I'd just paid for them to tell me what I wanted to hear.

Basically I don't know what I'm going to do. And I haven't ever talked to anyone IRL about any of this, so I'm telling strangers on the internet.

 

[Eeyore147]

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.

I just wanted to say I could have written that myself! It was also a Psychologist that picked up on mine. I did wait about 2 years and was diagnosed about 2 years ago. So much makes sense now I read more about how it presents with girls and masking etc.

It makes me look at things in a different light, and the cross over between ASD and my Mental Health is unreal! It’s exhausting .

At least you’re on the pathway now!

 

[Guyyyyyzzzzzz]

My friends think I have autism. I have struggled for a long time but I just always assumed that’s who I was but I get told I’m not normal all the time, I think it’s got worse since lockdown.

When I have done those online tests they come back as highly likely but I feel silly approaching a doctor about it.

Same! But my drs are pretty terrible in terms of everything being a tick list rather than actually listening to you.

So my plan is to go for a private assessment it’s around 1900

 

[Melian]

I’m glad to have stumbled across this thread. I’ve not read all the posts here yet, but just the few I have read had me nodding my head and feeling a sense of relief. I’m certain that my OH has a form of autism (Please forgive me if I don’t use the correct terms; I have a lot of reading around the subject to do); I’ve only recently realised that it’s probably the explanation for his inability to display real emotion, his fixation on routines and habits, etc.
But I’m now feeling that I have probably always had traits too. In different ways though, such as massive social anxiety, labelled as extreme shyness; becoming hooked on things for a space of time before moving onto something else; I so resonate with the comment earlier in the thread about having to rehearse small talk before meeting up with acquaintances (I have no close friends)
I’ve done a self assessment and scored 36.
For those who have an official diagnosis; does it help in any way? Are you given any help in managing situations differently? Or is it simply a case of being able to understand yourselves better?
I’m wondering if it’s something I could pursue, although I feel it’s probably a bit late in the day for me.

I was hoping after my diagnosis that I'd receive some help, hence asking for a diagnosis. I was told to speak to social services who have no understanding of Autism and sensory issues. They refused to work with me because I'm "awkward" because I don't like loud noise and needed more than 5 minutes warning of an appointment.

I have had to use my diagnosis to explain certain things to people. (I have great difficulty with my understanding of language) But other than that, it hasn't really helped.

 

[Guyyyyyzzzzzz]

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. I think an NHS diagnosis is legit, but I don’t have it in me to fight for one (and arguably, I don’t need one so shouldn’t take a place in the queue that could go to a kid or someone who needs a legit diagnosis for PIP or other reasons). If that makes sense x

As an adult you wouldn’t be taking away from a child being assessed because the pathway is completely different.

I get what your saying but from my point of view I don’t plan to shop until I get that confirmation if it’s a yes it’ll help me to understand myself more and people assuming I’m just rude or blunt.

if it’s a no, then it stops me always thinking we’ll what if I am?

I think I’m going to try and pluck up the courage to have that conversation with my drs if I can get past the receptionist

 

[Fanny Muchmore]

I'm not diagnosed and at 43 I wonder if I'm too old to pursue it. I’ve always felt 'different' but it wasn't until recently that I suspected I may be autistic. My 2 nephews are autistic and were diagnosed as kids, and I thought I knew the symptoms but then I found out that girls present very differently- my 22 year old niece (from another sister) has just been given a preliminary diagnosis and is being referred to a specialist, and when she talks about her symptoms they're just like mine.

 

[heretoreaditall2019]

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…?

 

[Melian]

Diagnosed as an adult here

 

[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.

 

[maytoseptember]

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

 

[dancingqueen5678]

I think when googling about ASD if your a women allllllllllll research out there is based on boys/men.

So that’s how we get missed or mis-diagnosed.

Girls present differently to boys which professionals don’t always get .

So as girls we learn to fit in we learn what’s ‘right’ and how not to look like the weird ones.


Then at home where it’s our safe place and we can be us that’s when we break down that’s when the meltdowns come and the ‘crying over nothing’ because we are exhausted from masking all day and fitting in.


I’m constantly told I’m very blunt. I have to watch for peoples expressions or their body language and sometimes I can’t read them so I over apologise for being rude, there’s times where before I say what I need to say, I’ll say I’m sorry if this comes across as being rude I’m not meaning to be.

It’s incredibly draining.

Before going somewhere new I have to google the place where the toilets are, where there’s food how far away my car is parked. An then I’m anxious the whole time. Because I can’t relax, it’s new and I don’t like it.

I over think. Constantly over think. I hate the way some clothes feel and it’s like I can’t think straight so I need to remove those.

The list is almost endless of things I do. As a child I had a routine where I had to go through a process of checking things, my parents tried to say it was because I was trying to get of sleeping. When all I wanted was to sleep. I later learned that was OCD when I’m stressed I feel those thoughts slowly creeping back in.

Life is hard without masking and pretending, and thinking about back then and now, I 10000% don’t want my daughter to go through any of that.

Girls really do mask to fit in! I also think that a lot of the time, girl's will have "special interests" that are typical of other girls, like horses or gymnastics which I think is why a lot of girls go unnoticed.

I am the same with facial expressions. I can tell if someone is happy and that's it. I only know by tone of voice how someone is feelings which for years I thought was normal.

I am the same way. I eat at the same restaurants, if I go away I stay at the same hotels usually a budget hotel that are the same everywhere you go.

Same with sensory issues! Clothes are a nightmare, I can't buy online cause I need to see and feel the material

 

[shadowcat5]

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 could have wrote this myself

There is a long waiting list but it's worth seeing a GP. You won't take the place of a kid who needs it providing you're an adult. They are completely separate teams/systems etc.

 

[Sheabutter]

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

Ooh I’ve got one of these. My industry revolves around two proprietary software companies. I’d love to help people learn the ins and outs of the one I use

 

[Sheabutter]

This is actually an issue that came up with my therapist. I had a lot of trauma in childhood and we’ve discussed at length was I autistic or was I traumatised or was I traumatised because I was autistic so trauma affected me different than it maybe would another kid. It’s like a what came first the chicken or egg kind of scenario

I think I could chase my tail in endless circles trying to figure that out. On top of everything else that happened, my family is mostly comprised of engineers. Silicon Valley is becoming self aware of the social consequences of so many engineers in one place.

what does that mean, sorry? Operating with a guile?

Someone saying something misleading for selfish purposes.