AIBU to know for a fact I have undiagnosed Autism?

[SpainwithouttheS]

My two children have Autism. I see SO much of myself in them both but in different ways.

It breaks my heart when I think back to my childhood. My mum said yesterday, “I always knew you had Autism but back then in the late 90s it just wasn’t a thing to get your kid tested” I was a young child in the late 90s.

I remember vividly the absolute meltdowns I’d have when it was time to get dressed for school or any other occasion & the stitching of my socks would come under my toes & I couldn’t stand the feeling I’d sob & the same with the stitching of my knickers. My mum would try & be patient but sometimes she’d give me a firm smack across the legs. She forced me to join cubs to interact more with kids, I have always loved a military routine for myself when it’s disrupted I get so agitated. I absolutely hate social interactions with others outside of my close family, I struggle badly with it, when I talk I don’t realise how stand off I sound it’s like I talk bluntly. I don’t realise it because to me that’s just normal?

I don’t blame her for that btw. She’s right back then autism just wasn’t as well known. But I can’t help but wonder would I be socially better if she had have gotten me diagnosed?

because I have grown up with a huge family & I’ve masked my symptoms amazingly since I was old enough to realise that I was always a bit different to
my peers but I’m feeling more & more down. I cannot stand social interaction but I force myself too because I want my children to get as much of it as possible.

I have a lovely little family, but AIBU to know I do have autism but is it worth me getting a proper diagnosis? Will it make a difference?

Since my children have been diagnosed I’ve thrown myself into the deep end where social interaction is concerned like their friends parties, even though I stand there like a lemon on my own I take them because I think they deserve that at least. I adore going out to the farm with them we do the same things & we love it together.

My boyfriend (the children’s dad) said tonight, you’re isolating yourself so much from people it’s sad to see, maybe a diagnosis might help you get some therapy for it & you’d not be so socially awkward.

Genuinely thank you for reading this far. I just feel like a right OddBod & I’m mentally exhausted from masking all of these traits I have. I feel like just jumping out of my skin & saying this is me, like it or lump it. I can’t help how my brain is wired. The older I’m getting the more obvious it’s becoming. I’d love to know if anyone else is in the same boat as me? Thanks x

I understand. I was a child in the 90s who also grew up undiagnosed. I was a girl and I was good and quiet, so I slipped through the net.
I recently got diagnosed with ADHD and it’s been a game changer for me. It’s not an excuse - I know I’m still accountable for my behaviour etc but it means I understand why I struggle with things sometimes. I’m glad I got a diagnosis. It means I don’t feel weird and bad anymore. I feel the way I do because I have ADHD. There’s a lot of stigma around it and people say invalidating things but it’s ok because I know why I am the way I am now.
it just makes me more passionate to educate and try and change the world for all the neurodivergents in the future. I hope that one day saying that you have autism/adhd etc is just as natural and accepted as saying you have asthma. Long way to go but there’s hope.

There is no therapy that "cures" autism. If your bf has two autistic dc he really needs to put in more work to understand it.

It's a personal choice as to whether you seek a diagnosis. Most autism groups allow self-diagnosis, so you'll have to weigh up whether the benefit justifies the effort.

I am in the same boat - 2 DC both diagnosed, they have different dads…so I’m the common denominator.

Through learning about autism because of them I am a billion percent sure I have it, but I have never sought a diagnosis. Tbh, even for children there’s no real support out there so there sure as hell wouldn’t be for adults.

Personally just learning about autism has been enough for me. It’s like I went through most of my life trying to use the wrong instruction manual, but now I understand myself a lot better. I’m not afraid to say no to situations I know I won’t cope with, or make my own reasonable adjustments for myself. For example, I don’t push myself to socialise so much, and if I do go to a party or a festival or something, I make sure I book a room nearby or have my caravan there so I can retreat to my safe space when I’m peopled out. Or make sure I drive to things so I can escape when I need to (tbf I always did that but now I know why!).

I have lots of acquaintances but very few close friends and I like it that way. And the close friends I do have are on the spectrum too, birds of a feather and all that.

My kids are older now and I’m past the awkward trying to socialise with other parents thing. I hated birthday parties, school pick ups etc and never made a single friend that way, people just ignored me but I was ok with that.

I would encourage you to seek a diagnosis but don't expect any kind of aftercare or counselling on the NHS to help you deal with autism.

In the 90s and even early 2000s (and even now based on experience), being recognised as autistic or ADHD, especially for girls, especially for children who were generally 'high functioning', was so rare. I wouldn't blame parents for who it went unrecognised in their children at all.

I suspect I am ASD but no-one can tell and no-one believes me. I am not bothering with an assessment as I don't see how it would serve me. I would if I thought it would be helpful.

I’m 50 ,I’m currently waiting to be assessed for both Autism and ADHD .
ive spent a life time trying every antidepressant possible and nothing worked.
my doctor suggested I get tested as my children have Autism and ADHD and he said that’s the most likely scenario.
my has been one long …” if I could just try harder I could fit in / manage life the same as everyone else “…I try and try but everything seems so difficult.
its like everyone got a manual on how to adult ,except me.
i know there’s no help available,assuming I’m able to communicate enough to get a diagnosis,but I will at least understand myself and feel peace I tried my best

I was the odd one out kid, didn't have any friends, was a complete loner. I mucked up my education & left school with hardly any qualifications. Books were my friends, I spent most of my childhood reading in my bedroom. I was badly bullied at school because I didn't fit in. I've struggled with friends & relationships all of my life, jumped & got married to the first man who asked me even though I knew I didn't love him, he was abusive, messed with my head & then just before I left him he raped me. I knew nothing about Autism until ds was diagnosed, then things started to click together. I asked for a referral for an Autism assessment & was diagnosed age 53. I sat in my car after getting the diagnosis & cried, I wasn't odd or a monster, I was just different.

Yes me. I’m 54!!!
It became abundantly clear when my daughter was diagnosed. My son is on the pathway too and will without doubt get a diagnosis. Reading my daughter’s profile was like reading my own. I read Spectrum Women and Aspergirls recently and they were like reading my own autobiography and both books have been hugely helpful.I’ve had the first part of my assessment done. ADOS soon. The diagnosticians have been lovely and said they’ll be talking about areas I find particularly difficult in the final session. I’m not expecting any support after, just knowing is helping as so many things make sense now and I know it’s not my fault. I don’t think enough is being done to acknowledge the damage and support women and girls who have slid under the radar for years.

Nat6999

You sound so much like me.

It will make a massive difference if there are any reasonable adjustments you'd want at work

I think the constant castigating yourself (for not making friends, not fitting in), self criticism, problems learning even though you did well academically, search for the dopamine hit (why can't I lose weight), whirring brain. Suddenly it's not because you are unfriendly, stupid, lack common sense, don't pay attention. It's because you have adhd/ autism or a mix.
It made me feel much more relaxed about life once I knew.
Also a programme on Radio 4 recently the speaker said 1 in 67 have autism.
So there's a lot like you out there.

I had to smile when I read about the stitching on your socks. I was the same and remember my gran taping my toes individually just to get me to school. Amongst lots of other traits I could well be diagnosed but I've accepted the way I am and deal with the world in my way. How do you feel a diagnosis would benefit you?

I am not sure you will get much from a diagnosis tbh. I would definitely read up a lot on it and then pass the books on to your DH to read. Maybe he could take your dc to parties, if they want to go. Parties are challenging for a lot of people to deal with, which is probably why he isn’t leaping at the opportunity either!

I'm nearly 60 and when I look back on life the people I was friends with over the years (not a lot) often had partners or children, often both, who I now realise probably had autism or adhd. I include my DH in that though he is totally in denial. It seems like attracts like. So I would take a second look at DH........ did you say he's a farmer??? Perfect job for someone with autism/adhd.

is it worth trying the farm visits with people you like? So activities you like and people you like? Party situations can be awkward for lots of people in different ways.

Yanbu. I am the same, have known for years but exdp went mental when I said I would like to be assessed. He said no was can I be autistic because I 'can handle change'. I hate change and like to plan everything with military precision. I also don't have meltdowns, I shutdown instead. According to him because I am not non verbal and don't have challenging behaviour like ds I can't possibly be autistic!

I was diagnosed last year age 46. I wasn't happy to self diagnose. For me it just 'didn't feel right' to do that. An important part of the process of beginning to understand myself, was to be properly assessed.

Has it made a difference? I think a little, although I'm still struggling as much as ever, if not more at the moment. I do now at least have an explanation for so much in my life. And I now know, that some of it, really wasn't my fault.

If it helps, I don't know if being diagnosed in that generation would have helped that much, maybe apart from at home if you have loving parents. An older relative of mine was, and the label (I don't think it's a label now but it was then) basically gave his teachers carte blanche to dump him in the back as a freak, and to humiliate him harshly and publicly (public scolding was a usual thing back then), and he was also ostracised by peers and their parents when they found out.

I’m on the waitlist, child of the 70s. Diagnosed with ADHD several years ago. I had no clue I might have autism until I went to get my DD assessed and was her relative. The assessor in his final report said that my DD was very much on the spectrum, then looked at me and said “mum is too”

Id been referred to the ASD wait list a few months before by a psychologist but hadn’t taken it seriously as I’ve been misdiagnosed with EUPD and am always a bit 🤨 when a psychiatrist or psychologist blurts out I have “x” prior to actual assessments.

It was actually to my advantage to go undiagnosed as I’d never have had my career. It’s not the sort of career that allows any “mental” type of disabilities.

Yes to add to @Onnabugeisha's comment, formal and informal discrimination in careers was absolutely a thing then as well.

These days things are so different and if you feel it will help you practically and/or emotionally, 100% go for a diagnosis.

A diagnosis can help with acceptance and understanding but if you’re in the U.K. it’s unlikely there will be any specific support on the basis of diagnosis. You could ask to be referred for counselling for example, without a diagnosis.
What about looking for an adult austitic women’s peer support group or something like that? Some will be online but there is one local to me (my child is autistic) which is a face to face group.

I have just been diagnosed as an adult with ADHD, after my son being diagnosed a year earlier. It has really helped me validate who I am and recognise there is a reason why I find some thing hard. The only issue was having to pay to go private due to wait times, but it was 100% worth it for me.

My DH is a clinical psychologist and in talking to him a while back for another friend, he pointed her to an Autism screening test I think on Simon Baron Cohens website. He’s Ali Gs brother and one of the leading academics on Autism in the world. He also was recently on the BBC Paddy McGuinness programme about autism where he assessed his wife.

Have a look on his website and see if you can find the screening materials. Could be a good first step. If you cant, drop me a DM and I can ask my DH what the official name of it is so you can find it online.

Thank you all for all your informative & lovely replies. I’ve just read them all. It makes me feel less lonely.

Im in the uk & I don’t think I would get any support if I was to go ahead with the diagnosis but I’m still thinking about going ahead with it just for my own reasons.

I wish there was more awareness when I was a child. It wasn’t even that long ago either but it’s come on a fair bit since then I suppose. I’m going to read up more about how I can be better in social situations like talking to people. That’s holding me back majorly.

Thanks again, I appreciate all the comments so much!

I worked with someone who got a diagnosis in their 40s. From a work perspective best thing they did. I think it would be good to get a diagnosis but not essential.

I too have always suspected o have dyslexia and ds has and like another poster says the psychologist said in report I probably also had dyslexia. I never formally tested for it as a part of me doesn't want to know. So I understand any hesitation you have. I think we are still a bit fearful of labels.

I also have a friend who thinks they are on spectrum but has never tested. I think it might help getting a diagnosis. But can understand when people don't.

This is a very timely thread for me as I was diagnosed this week at the age of 44. Like PP it was important for me to be formally assessed rather than self-diagnose (albeit on the suggestion of my psychiatrist) as I can accept the expert opinion over my own take on things. As it happened the psychiatrist at the assessment came up with a bundle of other diagnoses, possibly linked to undiagnosed ASD, that are contributing more to my troubles with life and will respond to treatment.

It’s been 3 days since the report hit my inbox and I have had the best three nights sleep in about a decade. Obviously this might be completely unrelated but the acceptance must be lowering my anxiety.

Obviously it’s early days for me right now but I think it’ll be a positive. DH has been much more relaxed about/around me since the possibility was raised and it has improved our relationship immeasurably as he no longer sees my odd behaviours as me being “difficult” or some other pejorative term, he sees me as being unable to do anything differently.