Disclosing your new diagnosis as an adult

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I am new to posting to this forum and have been diagnosed a few years ago as an adult. I would like to ask anyone who has been diagnosed HFA in middle age, whether telling people about your autism diagnosis has helped or hindered you in life? How has it affected your relationships with family/friends/colleagues??

I was diagnosed a few years ago at the age of 36. I have only told 4 people (family members including my husband) partly because I feel like there is a stigma and I worry that people around me will start judging me negatively because of their general lack of awareness about the condition. I do not feel good about the diagnosis. I feel it makes me a ‘lesser’ person somehow, though I’ve always felt lesser/not as good as other people throughout my life but have never known why until I got diagnosed. I got horribly bullied at school (I used to think it was because I was shy and ugly, I now realise it was because of the autism! though possibly the ugliness didn't help - I'm also ginger, which definitely doesn't help!!) and ever since school have kept people at arms length while trying to act as normal (i.e. neurotypical) as I can.

Do autistic people who try to hide it just carry on acting normal after diagnosis or does anything change? Is it better to be openly/publicly autistic or to keep hiding it? I live a relatively normal life as in I have an office job, a husband, house and car, and occasionally force myself to social events. I don't have many friends but appreciate the ones I have. Many others have come and gone and I never knew why in the past but again now know that must have been they got offended by my autism at some point! Does telling people you have autism make people treat you with more tolerance and understanding, or do they just treat you like an idiot or avoid you more than usual?

How have you ‘come out’ or announced your diagnosis to people? did you drop it into a conversation? Put it on facebook? Send a letter/email? How did people react?

Does anyone regret telling anyone that you are autistic?

Any coming out stories/advice welcome!! Thank you

Even though I have received plenty of criticism from family and friends (those one would think would have a better understanding of my diagnosis and its characteristics) since I was diagnosed two years ago, I still describe my diagnosis to others when it seems relevant. I do this because most people need to learn that we aren't all cute kids whose diagnosis will disappear when we become adults. We can't find acceptance if we never expect it in others.

I was diagnosed a few months ago. My husband came to the assessment with me and he's been great. Don't think his parents really understand what it means. My parents and sister think it explains a lot about me. Haven't seen anyone else I know to tell them but am probably going to tell my friend when I see her this weekend.

Feel like I should tell more people so they can see what autism is like beyond the stereotype or even so they can feel better if they happen to have it too and are keeping it secret!

I like that quote. Similar to my experience. I've told certain friends and where nceccesary,future work possibility,and scenarios where I've deemed it necessary. I have a really strange family,they didn't seem to handle it well. I'd go as far as to say they seem ashamed of it,or just can't accept it. While my sister who lives abroad seemed to have an idea anyway and she is completly understanding. I've not came out with everyone as such as I worry about about what people would say after such an abysmal reaction from family. I suppose the worry is that people will think I'm autistic... :0/

Hello there! I was diagnosed with Severe High Functioning Asperger's Syndrome or HFASD only 3 months ago and I'm 42 now. I believe our situations are somewhat similar but my diagnosis has been fairly recent so I am also still trying to figure all this out too.

The people that I have told about my ASD have been unsure of how to treat me now, that's for sure. In their minds, I am now "mentally handicapped" and it appears that they are "walking on eggshells" around me. There has also been some condescending behaviour as well as if they are now talking to a child. But believe me, I have always felt like a child and have never really grown up because of ASD. My emotional development feels stunted and unmoving, even @ 42 years of age. I stim constantly, I have regular meltdowns, etc. etc.

Funny thing is, my therapist labels HFASDs as "both gifted and disabled at the same time." I think he's right.

Their attitudes towards me have definitely changed, so prepare yourself for that, and it may not be the result you want. In the minds of NTs, we have all been lumped in together with every other mentally handicapped person out there in one big uncertain pot. So expect their reactions to be VERY hesitant around you.

Like you, I was bullied mercilessly growing up and I still get bullied in the workplace now. We are to NTs, just something to poke and prod to get a reaction out of and amusement. I am still trying to resolve this. Being a guy, other guys, NTs of course, have very little patience for Autistics who act like they're too timid and weak or something. I have also chosen to keep people at arms length. But, most Autistics do, we hate NTs, we love solitude. And that's normal for people like us.

My advice would be to tell everyone you are close to, but be careful in the workplace. This will label you as a "problem employee" and "low hanging fruit" in your employer's eyes are we're the first ones to get axed if cutbacks are needed to save the company money. So don't tell your boss or co-workers. Just don't.

On the whole, in the short time I have been diagnosed, NTs that know I have Autism are simply "charitable" towards me, and I don't have any real friends, just acquaintances. They act towards me with trepidation, to put it mildly, like they're afraid I'm going to start hitting myself suddenly. Which I do, but most of the time I do that in private but it doesn't always work out that way.

ASD has been a profound discovery for me, as I'm sure it was for you too. But my younger brother and I have always suspected for a very long time that we're Autistic. We just didn't have parents who cared to get us evaluated, nor did we care about ourselves. Our upbringing was the absolute worst environment for ASDs. Violent, abusive, hateful, unpredictable, stressful, and completely intolerable.

That is why my younger brother and I both had heart attacks in our early 30s. The stress of this thing AND allowing this festering wound known as Autism to go untreated simply caught up to us.

So, my advice would be to glue yourself to these forums because they have been a Godsend for me, they've made me feel less alone, less freaky, and have helped me to accept this unusual world of Autism. I don't regret telling anyone because I'm sick and tired of hiding, and it will be less stressful you, I guarantee it. Just be careful in the workplace.
Hope you stick around!

Very true! It is useful I suppose to educate people about autism in adulthood. Do other people react better than your family, or are they just non-plussed?

Similar to my family’s reactions, and indeed, good reasons!

Sorry to hear your family took it badly, good that your sister is understanding!

Its what people think it means isn’t it, not everyone has the same understanding

Thanks so much for your advice and warm welcome, really appreciate it. I already feel lots better being on here!

That sounds about what I would have expected from the workplace to be honest so I’m glad I’ve been cautious so far! Will definitely tell a few more people outside of work though and see how it goes.

That’s awful that this condition and upbringing drove you and your brother to heart attacks but by the sounds of your upbringing I’m not surprised, sounds like an horiffic experience to have to deal with! Life is hard enough as it is with autism without extra distress like that, especially as a vulnerable child I had one verbally abusive parent and it caused me lots of mental illness in my twenties (another thing with stigma not to be disclosed!!)

For me the diagnosis is a double edged sword, its an answer as to why I am like I am and why life is so difficult, I can take the blame off myself about everything that happens to some extent but now have a label which isn’t very positively viewed!

Totally the same on the stunted emotional development, I just can't handle my own emotions most of the time!! ! Sometimes lock myself in a disabled loo to have a meltdown, I don't know how I would cope with life without those places!

Gifted and disabled, I like that though! Have definitely not felt very gifted so far in life that’s for sure but hopefully will change that view in time

Look after yourself (and your bro, good that you have each other!)

The problem with disclosing it to people who don't know you is that "asperger's" or "autism" just indicates you have issues. What those issues are varies widely according to the individual. As well as the severity of those issues. To someone close to you it may be useful for explaining why you are different.

My mother's hospice nurses like me a lot because, as one said just yesterday to an intern, "[AspieUtah] is great for long-term knowledge of his mother's conditions. He remembers things about his mother from many years ago." They even made me an "honorary nurse" for quickly learning what they do for my mother and doing it like they do (or improving it). My family means well, but they don't usually remember the names of the nurses, even if they do remember which condition gets treated from day to day.

While my special interests are genealogy, history, law and politics. I suppose I have added certain interest in medical-care abilities in the last few years, too.

My life is a lot like reading Tolkien. If I hear or read a word I don't know, I research it and add it to my knowledge. After weeks or months (even years), I can converse with professionals (like my mother's providers) on their level. I have even persuaded them to try doing a few things that worked better than their intended courses of action. A couple years ago, I challenged a neurologist who was planning to discharge my mother from a research hospital the morning after she arrived because he "saw no evidence of a stroke." I explained that her originating Level 1 hospital had already completed an MRI scan, and his own Level 1 hospital had completed two such scans overnight since the first scan. Chagrined, he reversed course immediately, and start ordering his physicians' scrum staffers to do everything they could do prep her for a full stay. He is now one of my medical friends who I can contact anytime with questions. I am proud to say he likes me.

I guess that's why I feel a little like The Good Doctor's Dr. Shaun Murphy getting proved right despite senior staffers disagreeing with him initially. Hehe!

I've been cautious about disclosing, but so far haven't had cause to regret doing it. (Except possibly to my parents, but I didn't have lot of choice.) Most of the people I've told had at least some idea what I was talking about, even if not the nuances. I recently met a cousin I hadn't seen in 20 years. I was struggling to account for the oddities of my life since then, and ended up "outing" myself as autistic. Suddenly it made a lot more sense to him.

Hey everybody so on friday was the day i received my official diagnosis. So the Diagnosis that i received are social pragmatic communication disorder, Intellectual disability-IQ=69, and ADHD.

Disclosing at work became a moot point for me.

I'd been off sick on and off for several months and eventually I ended up seeing the OHA. He was great and picked up on it after seeing me (and all the papers I'd brought) for about 15 mins. He had to do a report for work and put "suspected Asperger's" in the report which my manager then got.

In the end when it was all official I told a few close colleagues (those that supported me while everything was going wrong) and the line managers who may have cause to talk to me during the day.

I have considered telling a few others since then - but I am really hesitant to do so, and haven't. The only other person I told was a worker in another department who was pushing me to talk to people I didn't need to talk to (it was somebody else's job) while we were sorting some new processes out. She has been brilliant since and really supportive.

Everybody else can mind their own business!