Autistic (undiagnosed or not) Adults Thread

[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…?

 

[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.

 

[heretoreaditall2019]

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

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

 

[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

 

[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]

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

 

[Phoenix Lazarus]

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.

Can I ask what job you do?

 

[Purrrrrrr]

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

Imposter syndrome is more common than people think. I always thought one day they will see I am not who they think and the reason my work is good is because of outside things etc. one thing goes wrong and they will see I'm a useless fucker. It's only now that I am seeing how much of my life I was winging it, bodging my way through it.

We think one of our granddaughters is autistic/ ADHD but mum doesn't want a diagnosis due to labelling .. I was in agreement with that but now my life although a good life now seems to be falling apart like cannot pretend anymore. everything that I believed was a little quirk of mine is now magnified and gets worse the older I get.

Maybe its because I'm not running on adrelnoline anymore, no stress in my life at all going from 99.9% stress before.

 

[Rockin' Robin]

Can I ask what job you do?

I work as a domestic in a care home. I've never really fitted in there though.

 

[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.

 

[dancingqueen5678]

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

 

[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

 

[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.

 

[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 tit, 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!

 

[dancingqueen5678]

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

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

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

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

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

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

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

 

[Millennial Pink]

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

Ooh, I'd not heard of her. I quite like Paige Layle(?) and Purple Ella.

 

[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.

 

[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

 

[LadyTonya]

Following with interest. Brother in law aged 37 recently diagnosed ASD and struggling

 

[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.