Opinions: those diagnosed as adults

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Hi all, I'm new to the forum and already I'm finding there's so much information and experience here that makes sense to me! I've put this in the Women's forum because I think it might be more relevant to the issues around women and AS, but I welcome opinions from men too

I have never sought a formal diagnosis of AS although I am sure beyond doubt that I am on the spectrum. I have debated the pros and cons of getting a formal diagnosis and I'm wondering, for those of you diagnosed with AS as adults, did you find it at all beneficial for how other people related to you?

I'm sure if I had been diagnosed as a child it would have made a big difference to me (and looking back I can't believe that no one did!) but I'm a bit worried that it might change the perceptions of people for the worse. I was reading the thread on 'gas-lighting of women and girls on the autism spectrum' which links to this article on the difficulties in being believed as an AS woman, and the experiences there are very much like my own. So the concerns there about not being believed are mine as well. I've worked very hard to learn the 'proper' way of doing social things (although sometimes I'm not very good) so maybe it's not as obvious.

It has been really helpful for me to understand myself by learning more about AS and understanding why I do things the way I do, and most importantly that I wouldn't be better if I just tried harder/worked at doing things the 'normal' way. And it's helped me to work to my strengths and not to get angry at myself for the things I'm not so good at. When I decided to tell my close family I showed them a list I found of how AS traits present in women (with the title cut off) and they told me it described me to a 'T' but then they were shocked when I told them those were AS traits. I think it has helped them understand me a bit more though.

Sometimes I wonder if I told other people I know, coworkers and whatnot, if it would help me and stop them thinking I'm just plain odd (which I'm sure they do anyway). Like when I really want to tell someone that their determination to hold eye contact with me makes me feel physical pain, or why certain noises or lights make my brain go awry and I'm not just being over-dramatic. Or why I get annoyed when they don't notice patterns or information that are incredibly obvious to me

But I worry that telling people will mean they think I'm making it up or make them treat me as less able because of their pre-conceived notions about AS and autism. So I would love to hear your experiences of being diagnosed as adults and how it changed (or didn't) how other people behaved towards you.

i got an official diagnoses because ...my parents wanted me to have law protection in the work place...and at my job, the PTB kept putting me in the front desk and after a while it was just WAY too much for me and like how some people have strong thoughts of suicide...i was having strong STRONG urges to just get up and elope.

i know for a fact that my life would be different had i been diagnosed as a young child. my parents clearly knew that i was different...but it was the 1980s. and my parents are the type of people to not know how or where to go to have dealt with this. plus my mum was a worker. always doing overtime and when i was a kid, she had night shifts and odd hours.

since the diagnosis, i've been given a set of tasks that i can handle. i've been put in a cubicle with way less light and sound. and my need to elope has nearly vanished. however, there are still some (family and coworkers) that are stuck in their mind that there is nothing wrong with me--so i still have some problems here and there.

as for telling, i only do so when needed. and when i'm comfortable enough with them and the situation. though, i'm not afraid of anyone knowing...i just don't see the need to just go up to a random person and tell them.

my parents...mostly my mum...is my support system...my "buffer" to the NT world and the people in it. however, i'm gonna need a new support team soon... but i have doubts i could get one like i see other people getting...mostly because i "look and act normal" most of the time.

Thanks Simmian7, that is very helpful and the kind of information I was looking for. I completely understand the need to elope too, I quite often get that before going into a situation where I need to deal with a lot of people, especially if they are unfamiliar and I'm quite often a few minutes late because I have to stop myself running out the door instead of going in! I'm glad to hear that your diagnosis has been mostly a positive experience for you, it gives me hope that it might help me in my life rather than make it more awkward.

Hi. I am having the same issues regarding whether or not I should seek diagnosis. I experienced the same thing with multiple labels as a teenager; I was diagnosed bipolar at 13 (probably just because my dad has it and my mom took me to a psychiatrist he'd once insulted and was asked to leave), so I'm pretty sure that "diagnonsense" was just a revenge thing. I got put on Zoloft and Neurontin, which only made things worse, and I once overdosed on it a year later and spent the whole night hallucinating and throwing up brown chalk (tasty, huh?) I've had social anxiety all my life and multiple "stims" that change as time passes, but I am always constantly fidgeting--rubbing my lip, tapping my fingers, swiveling in my char, twisting my fingers, etc), and my current job as a front desk person at a dental office is literally destroying my health. I cannot concentrate on anything because there are always people around, and on Mondays, I have to confirm appointments for the week. I sit front and center (a living hell), so when I call people and often end up having to leave humiliating voicemails, I feel like I have an audience. By lunch every Monday, I am near tears and ready to just walk out. (As a teenager, I have walked out on three jobs. Just got overwhelmed, pulled off my apron, and said, "I can't deal with this. Bye." As an adult with actual responsibilities, though, this is just not a possibility for me). It also took me 8 years to get a bachelor's degree--not because I was failing, but because it just never really clicked that I should have a clear goal, so I kept changing my major and taking unrelated classes just because they "looked interesting."

Simmian7: I was MADE for cubicles! I don't understand why people hate them. I wish I had more confidence and had decided to major in computer science. Life would be a dream if I could just sit in a cubicle and code all day and not have to deal with the infuriating general public. Now I feel like I am so stuck because all I get callbacks for on my resume are for sales and marketing positions. I have actually thrown my phone across the room before because I was so frustrated with all the offers for sales positions. My first job when I was 15 was as a salad bar prep girl, and it was, although low-paying, the best job I've ever had. No contact with customers--just cut vegetables and mix salads. As soon as I was "promoted" to cashier at 16, I had my first full-blown clinical panic attack, and actually asked to go back to the salad bar, even though it came with a pay cut.

i worked at a health clinic. at one point, the PTB told my boss, who then told us...that phones were a priority. i hated it, but took it literally...as most of the time i can only focus on one thing at a time and it's not so easy to shift from one task to another.

i remember one day...someone walked up to the window as the phone rang. I spent a handful of minutes on the phone, leaving the person at the window just standing there. when i finally gave her attention, she went off and stated "that they should stick me in a closet". and all i could think of was, "YEAH!"

now i work somewhere else, i started at the front desk, until they finally moved me. like i said, when they said i would have to do the front desk, i warned them...but they were like... "You have to do it" i was so ready to QUIT there.

i'm so glad now that i don't have to do the phones or the window....being at the OPEN area where the front desk was so horrible... i love the cubicle... the four...well three fake walls are my friend. did you know you can order a roof for a cubicle?
http://www.cubeshield.com/

I was recently diagnosed (last year, when I was 45). It's been a blessing to me and also hard for me to deal with the reality of the diagnosis on my own (one of the main reasons I come here where nearly everyone is awesome and helpful).

You don't have to disclose your diagnosis to anybody. I do think it can help in certain areas of life. I was quite reluctant to 'speak as an autistic' prior to my dx, because I felt like I was appropriating other people's struggles and didn't really have a right to it.

Guys, thanks so much for these replies, I'm glad to hear that your experiences of being diagnosed are positive and that you have or had a lot of the same reasons/concerns as mine it really does make me feel more hopeful that I can improve my situation.

Can I ask, did any of you experience any negative effects from some people when they became aware of your diagnosis? Like treating you like you were somehow "disabled" rather than just understanding that you have particular things you are not so good at or need understanding with? This is one of my concerns because I think I'm actually really good at my job (lots of science, not so much people ) except for some aspects of it that involve people or planning and other things, and don't want to be given less responsibility on my main job because there's "something wrong" with me.

I have the same dilemma - to diagnose or not …

I'm in UK. I wrote to a charity for advice but they are in a different county so they only could give me general information.

Which I have paste-and-copy-ed below.

"As far as I am aware there are only two routes to NHS diagnosis, but first you have to be sure that there IS an adult diagnostic service in your area. Many areas still do not have one.

The normal NHS route for referral is, I'm afraid, only via your GP. The only other route is if you are a 'service user' at your local mental health team, where your Consultant Psychiatrist could refer you if s/he knows enough about AS (and far too many don't 'see' it, especially in females, and most have never had ASC training.). However, some Consultants have had specialist ASC training and might be able to identify your AS without a referral to somebody else. There are no other NHS routes sad to say.

If you decide to go privately, there may be some independent Asperger diagnosticians who will see you without a GP referral. But private diagnosis is very expensive and starts at about £1,500 upwards. Even then, all you will get is a medical certificate stating you have the condition, but nothing more.

One thing you can do is ask the NAS to send you a list of diagnosticians (both private and NHS) in your area, and ask them if you could see them. However, they are legally obliged to report back to your own GP. Email them on: Helpline.Enquiries @nas.org.uk "

I haven't had the courage to email NAS yet! Communication does not come that naturally for me ...

My story is similar to the others. I wanted the official diagnosis to prove that I have the condition: after my initial consultation where two psychologists confirmed I am likely on the spectrum, I went for counselling and the counsellor didn't believe I was autistic at all. she tried diagnosing me with social anxiety disorder which I absolutely do not have *sigh* So I'm viewing the official diagnosis as a protection against the naysayers.

BTW, I'm the UK too. Be prepared to wait for up to 2 years for a diagnosis after you see your GP ... I went to my GP March last year and the process isn't complete yet.

I will say getting an official diagnosis is a mixed blessing. I myself did not find out till I was 16 and I rebelled at the idea for years, it took till about now to get used to it. I can say from experience it forever changed my perspective on things.

For me it hasn't done a lot to change how I relate to people necessarily, but its helped me understand why I interact the way I do. And this isn't specifically after the diagnoses, but I have had the eye contact thing come up...typically people don't seem all that weirded out when I explain eye contact is hard for me. Like people have asked me why I don't make eye contact and so I tell them its difficult and makes it hard to hear what they're saying most people then just seem to accept I am listening even if I am not looking. Except when I was a kid, some teachers just could not understand the concept and always thought I was just being a smart ass when I tried explaining it.

The diagnoses has helped me get on SSI, which I was in desperate need of...it sure beats being completely broke, I hate to admit it but I was ready to off myself if I didn't get on it. That is how bad the stress the prospect of being denied as a final decision after appealing was....I mean that would have left me no medical coverage so no therapy/treatments to attempt to help with my mental issues or just any general health issues that arise, no funds to adequately feed myself which for me is a bad thing since its not hard for me to get too far underweight....Now I at least know I can afford all those things and can even look to move out of my moms place now. But yeah I know in that hypothetical my mom would have wanted to still help but realistically she cannot afford to cover my needs let alone anything else.

Also I like how you showed the list with the title cut off....that seems like a pretty creative way to introduce it to people who don't know much about it. Also seems like it would present preconcieved notions....like if you where to just tell someone 'guess what, I've been diagnosed with aspergers/autism.' then they might figure you don't fit their pre-conceived notion and may be dismissive. Your way they would likely just think its one of those personality test things, until you explain it.

I don't typically inform people I am on the spectrum up-front.....don't really see much need to, and there is the thing about pre-concieved notions. I think it works better if I am just myself and then when it comes up that I seem unusual in some way no one can put their finger on then I might mention it. And aside from that I don't really go on and on about it or tell them every bit of new research/news on autism...because in the grand scheme of things they don't care about all that. But yeah my brother was a little worried when I actually got the diagnoses I'd let that entirely consume me and become some kind of autism dictionary and talk everyones ear off about it...and relate everything back to autism when he still just wanted to be able to hang out and have fun without worrying about that stuff...which I can understand. So I know I have the dianoses, I mention it if I feel it would be helpful information for the situation but aside from that I am the same person I was before the diagnoses....I don't feel autism alone defines me if that makes sense, but its still part of me.

Having an official diagnosis doesn't mean you have to disclose it to everybody you know. It could offer you some legal protection in the workplace, in those times when you find that you simply cannot comply with what's being demanded of you because of the anxiety it causes. That paper would mean they can't fire you for insubordination when you say "I can't do that."

For me, it was instrumental in helping me qualify for SSI Disability, which kept me from homelessness at the very moment that my career was running out of track, due to changes in technology. In other words, there may come a time down the road when you very much need that diagnosis and it would not be a bad idea to have it on file, just in case.

As for how others treat or relate to me - my immediate family certainly sees me differently - instead of the lazy slacker, barely skating by, I'm now the embarrassing ret*d, but at least they believe now that all those years I was telling them I couldn't do everything the way they expected me to, it wasn't just an excuse.

Aside from that, not much has changed, I still cannot get anyone to take me seriously when I have a problem (since it isn't happening to them and they've never experienced it, it can't be a big deal), and I have been verbally abused and discriminated against even by those who knew full well that I have a disability and had been apprised what it was.

Then there are the old friends and coworkers, most of whom, I'm pretty sure, think I've made the whole thing up, even though several of them specifically asked me over the years if I had autism because of my constant stimming. I always told them "Yes, I think so - lil' bit." I guess they thought I was kidding. Turns out it was more than a little, I just didn't fully understand then what autism was, so I had no idea how thoroughly it was affecting my life.

I was diagnosed when I was 25, after a few years of depression and unemployment. I found it helpful in my current work situation in order to get accommodation, but even more importantly, for me personally, was helping me gain self awareness: knowing what my strengths were and weaknesses, and learning how to improve my way of thinking. The major theme of my life, it seems, has been change, which is why I'm better acclimatized to it (and less dependent on rituals) than other people on the spectrum.