Dealing with late diagnoses

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I got diagnosed recently and late in life (age 25). One question is when, if ever, is it appropriate to disclose it to friends and acquaintances or dates? I honestly have no idea even how to think about the concept of being "disabled." I think it will take awhile to sink in. Up till now, I've kind of muddled through life with few friends, blaming having been homeschooled and other things for social deficits.

For others who got an ASD diagnosis, did it actually change anything about the way you approached life or social life?

I am sorry, I am very new to these forums, and sometimes, the multiple sub-forums sometimes confuses me on which one is appropriate for which topic.

It's not so much a "disability" as it is a trade off - sure, social skills are down the sewers, but your intellectual abilities, among other things NTs aren't comparatively skilled at, are through the atmospheric roof, so to speak.

I'd go with first going for a deeper understanding on what it actually means xD.

As for telling other people, just wait until the subject comes up.

How would the subject come up? Also, are people on the spectrum generally open about it, or is it something they keep to themselves? How much is it supposed to "define" you?

My diagnosis explained some of the trouble I have in classrooms or large restaurants, or when I find questions or answers confusing. So I disclose that I have AS, and (most importantly of all) I give an explanation of what that means. It might be something as simple as "can we sit outside, it is crowded inside and I have trouble understanding what you are saying when there are many other noises and voices at the same time in part because of my AS" At work it might be "those were excellent instructions so I want to be able to remember them all, however because of my AS I have trouble remembering spoken instructions, could you write them down please so that I can remember them"

I disclosed for my online dating profile because I stand out a bit in public, so I felt like I should give forewarning. The people who did not understand or did not want that were free to avoid me. But on the upside I found a great guy who also has AS.

I was also diagnosed at 24/25, and I found it useful to understand what I need help with and how to ask for the help I need. Most people are kind and accommodating about it, and there are a few jerks (but they always exist even with normal people) I just ignore the jerks. Learning how to ask for what I need has been hard but very useful. Many times it involves suggesting a specific alternative.

So, I think for a guy, disclosing such things on a dating profile could be problematic, or correct me if I'm wrong. At risk of stereotyping, girls are more concerned about personality than guys initially. It seems that girls who don't have a problem with it in theory might in person (and probably vice versa).

Has anyone tried "like Bones" when trying to explain ASD? (sounds like a much less "scary" comparison than Abed in Community). I actually have PDD-NOS, now that I look at the report more carefully. It's confusing. It said the cognitive profile matched AS exactly, but the behavioral profile had one dimension that wasn't currently severe enough--the one about stereotyped movements and narrow interests (I actually do, namely, politics, but the Dr said it wasn't severe enough) -- and I had some documented early language impairment.

That makes it even harder, so "a mild form of autism, like Bones in the TV Show Bones." Is the general public familiar enough with Bones?

Last edited by Tyri0n on 26 Nov 2012, 10:55 pm, edited 2 times in total.

When we are diagnosed as adults, it is especially difficult to believe that we have a disability. Not only is it difficult for us, it is difficult for our family members, colleagues, and friends to believe, also. Autism manifests so differently in individuals that it is tough to use research to find out where you fit in various groupings. But here is something I read recently in a professional book on autism (sorry, I have read so many that I cannot remember which one).

Most adults with autism or Asperger's who are high functioning do not believe that they have a disability. This can be damaging in several identifiable ways. One is that then they are much less likely to seek out interventions, supports, services, and self-development using their strengths to work on their weaknesses. Since we did not know until we were adults (yes, I was one), we went though a life development figuring out our own way to think about the world and make it work for us (often I am OK, you are not OK, or not, not). This book that I remember says that the level of disability that we have if we are high functioning is roughly the same level as total blindness or the loss of both legs. It may not be true for you, but I would recommend letting this sink in a for a little while to help you see different viewpoints.

Disability is not the same as lack of ability (in much professional literature the latter is called handicap, and is distinguished from disability). I knew a totally blind man who did things I could not think of being able to do. He supported a family of 4, almost single-handedly built an above-ground pool, fixed our family's car when we were stranded in a parking lot, played the organ. He was disabled but hardly not able. Blind people and people with 2 missing legs have received interventions from decades and even centuries of research and development and understanding that has not happened for and that I am now looking for for adults with autism.

I could see it being about as severe as deafness ... since it's a communication difficulty.

Could you explain more about intervention or "self-development"? Are there professionals who can help with things like speech anomalies and learning to read body language?

TBH, one acquaintance told me before I got diagnosed that my biggest social barrier was a prosody-less voice that "creeps people out" or "distracts" (my diagnosing physician). The doctor said few ASD people focus on the speech issue because they "have bigger fish to fry" and didn't know much about it. I think, for me at least, speech/VERBAL (forget nonverbal, though that's a huge issue too) communication is one of my biggest barriers to social functioning.

Last edited by Tyri0n on 26 Nov 2012, 10:58 pm, edited 1 time in total.

When I got diagnosed at 47 years, my first feeling was elation, and I wanted to shout it out to the entire world. NOT disclosing is surely the wisest or at least most conservative decision in most everyday life situations. I would not generally recommend disclosing in advertisements, dating sites, public forums, job interviewers, employers, and friends. However, your diagnosis is not a debilitating secret to be hidden and never revealed. You have to figure out the people who can do something with the knowledge that will improve your life, and disclose to them at a comfortable rate. Everybody will find themselves on a spectrum from low disclosure to high disclosure and will have to figure out where they are comfortable, where their life path is, hopefully BEFORE they disclose to the public. A funny thing happens as you are experimenting, and that is you disclose to this group and that group, and pretty soon it is part of your reputation whether you know it or like it or not. That is where I am.

One thing I have noticed is that once I started disclosing to employers, psychologists (yes, I mean this), and classmates, that I started noticing a lot of discrimination with the flavor of that lady that did the experiment on the blue-eyed and brown-eyed kids and adults (well, you would have to see the entire documentary), or that we hear from the African American movements, "10,000 slights and insults", somebody said. This is anecdotal and may be biased by my entire experience, yet it is definitely what I am experiencing. So, basically, disclosure can be dangerous. Now, I mentioned psychologists and that may seem a little weird but before my disclosure I got a lot of psychological help and after my disclosure (and on my way to diagnosis) I have been through a series of extremely bad experiences with psychologists, way too long a story to disclose, here. I get the feeling that they know little and love making money, to keep it short. My psychologists before my diagnosis seemed much safer and more helpful of my development. And in many ways I was better off not knowing. Depression followed, and my decision is that it is an exhilarating life path and one worth taking, so I will continue disclosing to many people and groups, and keep seeking competent psychological services.

Now, I can run with it. It is a liberating feeling, empowering. I could disclose on Oprah. I could be seen with Obama (just kidding). I mean I could be one of our heroes, blogging, TV and radio interviewing, self-advocating, leading organizations, designing instruction, doing public relations, being an example, being a poster child, doing research. And that is basically what I am doing. But even after I have "come out", I could still choose to hold back in many ways. Everybody does not know about my disclosure, and much of it can be pulled back (Facebook postings, for example). There are many levels at which I can disclose, such as I have idiosyncracies, I need structured schedules, I come from a family of nerds, I have broader autism phenotypes, I am on the spectrum. And both first impressions and most RECENT impressions are the things people remember and respond to. So total disclosure is still not right for me all the time. At work I would probably disclose with a temporary job coach or something but then not talk about it day-to-day.

Might simply this be disclosed without also mentioning AS?

And then, as someone becomes better friend or as a boss or workplace builds a track record of being more reasonable, maybe something like, 'How you heard that autism is actually a spectrum?'

Perhaps, but I get more help, and the help I need with airports if I am upfront about it. I do not tell someone as soon as they become acquaintances, but if one has been a good friend and they are wondering about my idiosyncrasies I explain fully. I think it is dangerous to hide it too much in a close relationship as that allows people to develop their own wrong opinions for what causes me too be different (drugs, stupid, lying, two faced, does not care etc).

It is harder to get accommodations at work if you know but do not disclose that you might need them and why. It is especially important for teachers to know as I learn differently.

I do not see why I should hide why I am different because of some uneducated or mean spirited people. I do not shout it out to every person on the street, but I feel that it is better to provide the reason for why I am "weird" than let people guess the wrong reason.

I wanted to comment on two completely different things from the OP, and sorry I didn't use the quote button so forgive me if I mix something up (disclosure: I am a NT researcher studying the sociology of autism):

On Autistic/NT Body Language and Voice
Yes there's all kinds of stuff on YouTube where you can learn neurotypical body language and ways to use your voice appropriately. I would just go slow with this and try one thing at a time. BUT, although I can't show this yet, I suspect, from what I have read, that the more people on the spectrum "fake" behaviors the more stress they experience having to keep up this performance. That doesn't mean it's not worth doing. I think it's similar to speaking a foreign language. It's too hard if you try to do it all the time. If you are say, trying to work on your voice, schedule a soothing kind of activity for afterward. Gradually increase use of your "new" voice until it feels more natural.

And by the way, it can be hard to hear voice differences yourself, because it's harder for people on the spectrum to pick up on vocal subtleties. It's best to practice with a NT friend or family member who will be honest with you about how you sound.

On Disclosure
Disclosing is great to get accommodations at work or at school. In everyday life, you might want to ask yourself how important this person is to you and do they need to know this information. I have a neurological disease and the only times I disclose it is if I can see that someone has just noticed me experiencing neurological symptoms or if it somehow factors into the conversation. Like someone else said, you can mention that you have trouble understanding the other person or focusing in a crowded room and you don't have to disclose you're on the spectrum. I say similar things all the time.

This is what made me realize I was on the Spectrum.

I have had several customer service jobs that I became proficient in quite quickly, learned everything there was to know about the products, and could talk the ear off of any customer if they asked me a question. I just couldn't do it for long. I'd start having meltdowns on my breaks, sometimes in the middle of my shift, and was frequently late or absent. It usually took 4-6 months for me to finally decide I had to quit. Sometimes, I would intentionally sabotage my work to make my bosses like me less so they wouldn't ask me to stay when I finally would quit. After quitting my last job eleven months ago (I was running a classroom of ten toddlers as a teacher,) I just haven't had the energy or mental capacity to even look for a job. I've been on disability due to "Borderline Personality" and "Generalized Anxiety" since then.

During the past few months, what with the election craze going on and living in a very stressful environment, my symptoms have become exacerbated to the point where people that were very close to me began to question whether I was less BPD and more ASD. Research was done, and sure enough, AS fits me in ways that I didn't even know possible. There were things about what I had considered to be "my personality" that I knew were not socially appropriate, and they had been buried away for so long that reading verbatim these exact things.. it was just incredible. So, I'm 24 and less than a month into my Asperger's realization. I'm in the process of getting an assessment set up, and its incredibly nerve-wracking.

I whole-heartedly agree with this. I may have only recently realized that I've got AS, but I've been trying to decide how to handle sharing this information with people. I think this is how I'll be dealing with it. People all ready find me rather odd and difficult to interact with at times, and I'm used to not having many friends, so if telling people I've got AS drives them away or helps them understand, it really won't be much different for me.

I wanted to comment on two completely different things from the OP, and sorry I didn't use the quote button so forgive me if I mix something up (disclosure: I am a NT researcher studying the sociology of autism):

On Autistic/NT Body Language and Voice
Yes there's all kinds of stuff on YouTube where you can learn neurotypical body language and ways to use your voice appropriately. I would just go slow with this and try one thing at a time. BUT, although I can't show this yet, I suspect, from what I have read, that the more people on the spectrum "fake" behaviors the more stress they experience having to keep up this performance. That doesn't mean it's not worth doing. I think it's similar to speaking a foreign language. It's too hard if you try to do it all the time. If you are say, trying to work on your voice, schedule a soothing kind of activity for afterward. Gradually increase use of your "new" voice until it feels more natural.

And by the way, it can be hard to hear voice differences yourself, because it's harder for people on the spectrum to pick up on vocal subtleties. It's best to practice with a NT friend or family member who will be honest with you about how you sound.

On Disclosure
Disclosing is great to get accommodations at work or at school. In everyday life, you might want to ask yourself how important this person is to you and do they need to know this information. I have a neurological disease and the only times I disclose it is if I can see that someone has just noticed me experiencing neurological symptoms or if it somehow factors into the conversation. Like someone else said, you can mention that you have trouble understanding the other person or focusing in a crowded room and you don't have to disclose you're on the spectrum. I say similar things all the time.

So if I got diagnosed and haven't told my parents yet, do you guys think I should? Part of me wants them to know and part of me wants to ignore it. Don't know what to do or who to tell if anyone.

So if I got diagnosed and haven't told my parents yet, do you guys think I should? Part of me wants them to know and part of me wants to ignore it. Don't know what to do or who to tell if anyone.