Getting your head around an Adult ASD Diagnosis

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Recently I have been on a bit of an emotional rollercoaster of a journey trying to come to terms with my ASD diagnosis (as some of you might know as I don’t half bang on about it )

The other day I stumbled across this article written by someone who has received a diagnosis in later life, and although it’s still early days, it’s helped me to put some things into perspective and hopefully will help me on my journey towards some sort of self-acceptance.

http://autisticnotweird.com/just-found-out/

The guy used to be a teacher, but now runs the ‘Autistic not wierd’ Website and Facebook page.

At age 58 I have been diagnosed with Aspergers.

I though it would be a major relief to give a name to the way I have always been. In some ways it has, but it does not change you. I have been getting counseling and that is helping for me to understand myself and where I have been. But there is pain there. It brought back memories of my parents always asking why I have few friends or why I never dated, or why I married so late (I married when I found someone who accepts me as I am).

Good luck

That link is so helpful. Thank you.

I'm going through this at the moment. It's hard on those around us too. My husband is very understanding but he is finding things really tough. Thankfully we have a very open/honest relationship, so I can know how he is.

The hardest thing for me is how little my family (parents/siblings) care. They see it, can acknowledge that I fit the criteria to a tee, but don't understand why it matters. They've always diminished my experience with poor mental health, so I guess it's no surprise that they don't get why this is such a big deal. Also processing this is exhausting and life doesn't stop to wait. Nor does my probably aspie child stop being complicated (and beautiful and amazing... But still exhausting) for me to work out my own crap.

Other things I'm finding hard:
- creating realistic expectations for myself now I know why I fail at being NT
- knowing it'll never go away
- grief over childhood experiences (mostly not understanding why such poor mental health when primary school aged)
- people don't understand autism. Esp in women.
- wrongplanet is still confusing, but at least the one aspie friend I have (not on wrongplanet) isn't confusing.

One tough part about being diagnosed as an adult is some people that have known you for a long time still don't accept that you have anything different about you. They cant see the struggle inside or put the pieces together as to why you have always acted in certain ways. If your case is less obvious of course. I want to tell people all the time I have autism, but now its so mainstream people are like so what. That doesn't have any affect on you. Its just as trendy as depression. Just a sticker to wear or a badge, when in reality it affects every aspect of how I think, feel, act, etc. Its almost like an invisible disorder since we have learned how to not look too abnormal.

I didn't figure out I was on the spectrum until a few months ago and I am 64. When I was in school, no one knew about autism, or even learning problems.

For me, it has been enlightening and joyful. All of a sudden, all the events in life that seemed inexplicable now make sense. I now exist in a context and not chaos. I don't really care if anyone else gets it. I get it and that is what matters.

That was beautifully put. You’re a good writer

Im 32 and diagnosed at 31. As a child I remember being given various diagnosis' that explained a few things but not the whole picture. In elementary school, it was ADD. In high school it was klinfelters syndrome. Shortly after my AS diagnosis, my mom explained that my klinfelters diagnosis was given a decade before i was told about it. When i was 16 my mom asked me what i thought if i had Asperger's syndrome. Because of what i thought i knew, i rejected it outright and it was dropped. She was reading a book that mentioned it and thought of me. It wasnt until a close friend mentioned the word Aspergers to me last year that i even started looking into it. He said his brother has it and i reminded him of his brother. Thus beginning my journey to find out who i was and why i am the way i am. I found myself reading a blog of a woman who wasnt diagnosed with AS until she was in her 50's. Musingsofanaspie.com led me to believe that i truely am autistic. When i saw how much this woman paid for her diagnosis, i debated on the idea of self diagnosis. I saw counselors and told them about my findings, but they said i wasnt on the spectrum because i talk so well with them. Sure 1 on 1 is easy, but i looked into their credentials. They werent trained to look for the signs. Eventually, i made up my mind to see a professional and pay out of pocket because thats what it was going to be even with insurance (of which i had none). The doctors were able to confirm what i already knew, but this time it was binding.

And this point in time, i struggle most with working on my deficits vs using them as an excuse for leniency. How much should i expect of myself vs how much is expected of me when no one at work knows i have autism. Do i tell them at the risk of being a joke to them, or worse being written off as inadequate for the job. I hate it when others pity me. I only know when others take pity on me because its the one thing ive experienced most in the social arena. I dont want condolences, i want to be seen as a man and not my problems.

When i found out about why my first girlfriend went out with me, i was enraged at my brother for setting it up. The pity date. He knew i liked this girl, so he asked her to accept an offer from me to go out on my birthday. When we did start dating, i never heard the end of it, jail bait they called her. I was 22 n she 17. No worries there cause i didnt lose my virginity until i was 27- to a manipulating, controlling, materialistic sociopath. When i ended it with her she pulled a knife on me, which only sealed the deal.

Nowadays, women reject the simplest things from me, like friendship. I say friend n all they think is 'he wants to sleep with me.' Its hard being literal when others around you try to read between a line that isnt there.

That is how it was for me. I just knew it, i just didn't have it on paper. Wasn't really surprised when i got the diagnosis, but i haven't received much help after that.

I'm still me. I'm extremely asocial, i get drained quickly by social interaction, i still tinker with things. Personally i think it's not a big change - it's not exactly on par with adapting to a post-apoc life in a radioactive desert.

(Yes, i love Fallout)

Keep in mind, ASD is not something you catch like a cold. You have always been ASD just as we all have. The only difference now is that you know.
In time you will become comfortable with who you now know you are.

diagnosed 18 months ago at 37 years old.

Was never diagnosed with anything as a kid, was considered 'normal', and was just someone who was usually quiet, skirted around a few social groups, a bit awkward sometimes and made some silly decisions. I also had depression when at school and have had eating issues all my life.

only from about 33 did I start wondering if I may have aspergers

Thank you so much, blooiejagwa. That is very kind of you.

I was recently diagnosed, at 38, and can relate 100% to all of this above.

I have a very poor memory of my early life, I think because I paid such little attention to the "social" aspects of what was going on around me. I was in my own world. Since my diagnosis, I've been finding out details of my childhood behavior that *should* have been major red flags. For example, my father said "when you were a baby you were so friendly, but around 2 years old you completely withdrew. I thought you didn't like me, you just tolerated me. I could never get you to do anything from that point on." I had all of the typical troubles in school, and was told over and over again that I was lazy and not living up to my potential. There's a sense that my family and teachers failed me, even though I know that isn't true. They just didn't know any better. Hell, it took me 38 years to figure it out and seek help. Now I'm stuck in a loop that starts with excitement over the knowledge of what causes my differences, followed by determination to find ways to improve my ability to interact, followed by failure to productively interact, followed by agitation with myself and everyone else, followed by more research in how to improve, and repeat. Bittersweet.

Hi Biscuitman, can I ask about your diagnosis? I’m in your area, aged 44 and self diagnosed - did you go through your GP or pay for private? If GP were they receptive or was it a struggle to get a referral? I’ve heard so many negative stories about GPs being dismissive (especially towards women)

I went to my GP with the aim of explaining the problems I experience and saying that I wondered if ASD could be at play here. My GP was very helpful, she said that they had never referred an adult for an ASD assessment before but was happy to based on what I had told her and also my medical history that she could see (depression, eating disorders). I was referred but then didn't go along, just started thinking I was being silly and that it was all a bit much etc. 3 years later it had played on my mind a lot and so I went back to my GP and asked for a referral again, they gave me one and I spoke to my private healthcare company (Aviva) who also approved that they would cover the costs of this (they had a special department talk to me for 5-10 to explain things before they would approve it)

I ended up seeing a neuropsychologist for an assessment in Reading. She worked 4 days a week NHS and 1 day private so I saw her on her private day. Going private also means it doesn't go on my NHS record i believe, it was only ever about self discovery for me and so now I have a diagnosis I can focus on dealing with difficult situations with that extra knowledge. I have only told my wife and my boss at work.

I'm going to be tested in May and can't wait. It seemed scary a couple of months ago but now I'm looking forward to getting a diagnosis.