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 am the same but with ADHD. I have a formal diagnosis now (at 30). I was hyperactive, always in trouble, impulsive and never stopped.
I tried my hardest at school but struggled so much and bombed out in my final exams.
I worked my butt off at uni and am now a Speech Pathologist, 2 of my children have ADHD and are medicated and I am so glad to see them supported the way I wasn't. I feel sad for myself with how much I struggled and how much harder everything was for me.

Approaching 40 and sure I have autism.
Always been very shy and awkward. Look extremely young for my age, odd accent etc.
People say getting a diagnosis is a long and hard process and just not sure if it will really benefit me.
Weirdly, I only started feeling different and struggling socially, when I left school at 16. College showed me that there is something not right with me.
Strongly suspect my grandfather, aunt, mum and sister all have it as well

Sorry I haven’t replied to each post separately but I am reading them all.

When my daughter got her diagnosis her ASD Consultant picked up on my traits & asked what I was like at school/home. I said very much like my daughter & she said I can’t exactly give you a diagnosis but if I was you I’d get yourself referred for one.

I was hoping if I did it would open doors for me to get some therapy for the social aspects of it. Things like social events, eye contact, having 1-2 Conversations. I freeze up. It makes me physically sick at the thought of doing those things. But I’ve been forcing myself to all of my life that now I’m mentally exhausted from putting myself through these things. If that makes sense.

Sorry type 1-1 Conversations**

Yes it makes a difference to be diagnosed. You’re legally entitled to reasonable adjustments at work. If anyone discriminates against you (eg refusing employment because of lack of eye contact or similar) you can sue. When you’re older you may need more support than you need now so a diagnosis would be valuable. And it’s just helpful to know in your own head what difficulties you have and why, it makes it easier to cope.

@OldSkoolLikeHappyShopper
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.

This is exactly how I feel. My eldest DS is diagnosed, and then more I learn about it, the more sure I am that I am autistic too. I don’t feel the need for a diagnosis at the moment as I feel like just learning is helping. I do totally understand why other people would want the diagnosis though.

<hugs> OP (or fist bumps, from a respectful distance, if that feels more comfortable to you!) You’re not alone.

You don't need a diagnosis to get reasonable adjustments

When I was diagnosed in my late thirties I felt exactly like you, and I hoped diagnosis would enable me to develop ‘better’ social skills, access support with social communication, etc.

What has actually happened (five years later) is even better. Through understanding neurodivergence and also talking to other late diagnosed adults, I have come to understand myself and accept myself, and would no longer choose to be neurotypical even if I could.

I always did see positives to my neurology, but saw them somehow as compensating fit deficits (as in, I may not be great socially but I can remember vast amounts of detailed information…).

Now, I know that my neurology is not s deficit but a difference. I understand my sensory processing needs, I can work with those to live a happy life where I’m not perpetually exhausted and overwhelmed. I value my ways of communicating and i don’t see neurotypical communication as better.

it is absolutely ok not to socialise in a neurotypical way. We have our own ways of being. Do your dc enjoy the parties? Do they want to go? If so, can dh take them? They will get different things out of going to the farm with you. You might need more down time and less social time than other families and that is ok. You can support your dc to work with their own neurology and not train them to mask, which is an incredible gift to give them.

I really wish that when my first child was diagnosed, I hadn’t thought that my job was to teach him neurotypical social skills. I wish I had understood his sensory needs. My goals for myself and my family are completely different now.

For me, I needed the validation of official diagnosis. You may or may not. You don’t need a diagnosis for adjustments at work etc or to be covered by the Equality Act.

You absolutely don’t need a diagnosis to be covered by the Equality Act or for Access to Work etc

I was diagnosed with autism as a child in the early 90s.
You seem to be saying you have issues that you would like therapy for? What’s stopping you from seeking therapy now?

There seems to be very little in the way of any kind of therapy/help specifically for autistic adults. I’ve certainly never seen any “social skills” therapies or anything like that as an adult. In my experience, some services will actually exclude you if you have autism, as they say they’re not capable of dealing with it.

My advice would be to honestly look at what is bothering you/having a negative impact on your life, and seek therapy independently to deal with it. If you have issues now, they’ll still be there if you get diagnosed, you’ll just be a couple of years older, and have dealt with them for a couple of years longer.

This is me too. Learning about autism with my DC explains a lot about me, but the learning is enough and I don't feel a need to formally diagnose myself. I can't see any benefit for myself, but the knowledge makes me more confident in myself.

I work for myself, though, so can make my own adjustments. DH is awesome and supportive and makes his own adjustments for me (and the DC). Socially I have a couple of friends who are good and I am reasonably good at masking long enough to have conversations at the school gate. Having this support in place as I've learned more about autism is probably what makes me content with just the knowledge.

Autism in the 90s just wasn't a thing where I was. It was either the non-verbal will-never-be-independent autism or nothing. My mother managed to get an ADHD diagnosis for my younger sister as a child, but my older sister definitely has both ADHD and ASD and is only now pursuing it in her 40s. Mostly because my DS2 is so similar to her, but she has spent her entire life feeling wrong and would have massively benefited from a diagnosis. She needs one to accept herself.

My eldest was assessed and diagnosed as a young child. He experienced developmental delays and communication problems that meant he really needed specialist support and his needs were pretty obvious at home and at school. His brother masked, and still masks.

When my eldest was undergoing inpatient treatment for his co-occurring mental health issues, the consultant at the CAMHS unit suggested I may be autistic. I had always assumed that neurodiversity came from my sons' father, who has a diagnosis of autism.

Yet, I had an eating disorder as a teenager and young woman, I had significant problems making friends at school, and I had, eventually, established a career based on one of my special interests. I married, but I married someone who, in many ways, was a little asocial like myself.

Like @FatGirlSwim , I undertook study into autism, and began a (second) career mentoring neurodiverse students.

My youngest has very significant mental health issues caused, at least partially, through his huge efforts to mask and his co-occurring anxiety disorders. However, he does not want to undergo an assessment for autism.

Rather, my youngest wants to take the route that I took, That is to see if he can build on his strengths, his ability to hyperfocus, his excellent recall of facts, and his low need for social interaction, and simultaneously find a way of managing his anxiety. I feel in this digital age, with all its new possibilities, he can do this.

So, I think the pursuit of a diagnosis as an adult is an incredibly personal decision. On reflection, I think if I was younger, and likely to change or develop my career, I would probably seek a diagnosis so reasonable adjustments could be out in place.

I was diagnosed nearly 2 years ago at the age of 34. I was a bit of a loner as a kid and was described as "not a good mixer" when I started school. I'm often insecure about my friendships even today. I don't have the sensory issues you describe, but if there are two or three people talking around me at once I do get overstimulated. I don't pick up on sarcasm or jokes unless the tone is right, either.

I think you're right that there was less awareness of autism back then and because I was a good, quiet kid no one picked up on it with me. My parents don't believe that I'm autistic, but I think that's more through ignorance about autism than anything else. On the other hand, I started a new job last year and my supervisor told me that he'd wondered if I was autistic because I showed some traits, like being super organised and precise about things. I hadn't said anything at interview, but autism came up in conversation at work and I told a couple of people about my diagnosis.

For me, I just wanted an explanation for my social awkwardness, and for why I'm a bit different. I don't need any adjustments as such, but I'm constantly trying to learn how to be "normal" around other people. It's good to know that it's just because of the way my brain is wired.

Also to add, I don't think there is any therapy as such to get better at social situations, but I found the book How To Win Friends and Influence People had some good tips. It was written several decades ago but still useful.

As for eye contact, I fake it by looking at eyebrows. I've been known to force it for a few seconds in things like job interviews, though!

I went through phases of absolutely knowing I was autistic to feeling like a fraud. My official diagnosis has solved that. The voice it has given me is the strongest I have ever had. The value in that has been life changing.

I haven’t forced my children to mask their traits or autism btw. I seen a comment saying about my kids masking their autism. If anything I’ve done the absolute opposite of that as I’ve learnt first hand how mentally draining it is too do that.

My boyfriend is supportive but I feel like a fraud of sorts because I’m not “Officially” diagnosed, so that’s another part of why I want a diagnosis. Then I think of the waiting times to be diagnosed for adults & it disheartens me.

I am truly so relieved though to read through all of these messages of people just like me. All my life I’ve wondered why I felt different. I had a huge group of friends in high school but I was always too mature in the head, I’d cringe when they’d put music on their phones on the bus to the point I’d get off the bus in embarrassment because I felt like I was to old to behave e that way even though I was 11/12, I used to cringe at stuff that I should’ve probably enjoyed doing as a teenager because to me I’d rather have been at home reading a goosebumps book, or watching a film.

I’ve read back all of my school reports & the signs were so so blatantly obvious, I rebelled ruthlessly in school, because sitting in a class room just wasn’t for me. I was clever in different ways. But school didn’t & still don’t advocate for different learning abilities unfortunately. I can learn things on the spot if I’m proactively doing it like I could put together medical equipment on my own & I wouldn’t need any help, I’d remember that for the rest of my life. I think I done a test for that & I was a kinaesthetic learner, not too sure what that means as I was a child when the school put me through the test. I think I’m a hands on approach type of learner. Things like that.

So sitting in a class five days a week for 6 hours of the day just melted my brain. I’m known as the clever one in my family but I’m definitely not textbook clever.

I wasn’t aware I could get therapy for undiagnosed ASD that’s why I’ve never tried to get some therapy. I think it’s just being told by an ASD Consultant that yes I do have autism will put my mind at ease. Like I said it’s the feeling like a fraud & piece of mind if I did get a proper diagnosis. But of course my life will still be full of fun & laughter with me & my two quirky little children even if I don’t get the diagnosis.

Again, thank you to everyone who’s taken the time to share their stories. I’ve been living my life thinking why am I so alone with this but I’m obviously not & that helps massively. So thanks again! Sorry for harping on.