Little support from family and friends after diagnosis

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I've just been diagnosed with AS at 55. The previous 10 years following a major breakdown (meltdown) I have been in treatment for depression, anxiety and more recently bipolar. It cost me my marriage, my home and my career, I've struggled on unemployed and alone.

My diagnoses of AS came after I was sent for treatment for chronic social anxiety (which I've had all my life), it was a shock but it immediately made complete sense to me. I replayed back all my life and understood my life-long struggles coping around people and the high price I've paid to my health by trying to 'fit in'. I only got away with it for so long by being high functioning. It's only early days for me and I'm still trying to make sense of what it'll mean for my future.

What I am disappointed in is the reaction from my family. They've basically totally dismissed the diagnosis telling me not to give myself another 'label' and just get on with life. Perhaps I'm partly to blame. Even now I use all my energy to try and give people what they want in social situations. I've always given people (especially my family) my best 'method acted' chatty, breezy persona which has been my default all my life. It's taken so much out of me over my lifetime and now I know why. I feel I don't want to dump and explain all my hidden difficulties I've had all my life through AS with my family. They've only ever known the 'constructed me'.

I'm feeling now that I need to cut everyone out of my life and give myself time to find out who I really am. I'm exhausted with aping NT's, its given me little pleasure and just made me ill. Luckily I'm happiest in my own company so cutting people out for a while makes sense. Even if that means cutting out my family.

Last edited by glennj on 20 May 2014, 3:09 pm, edited 2 times in total.

Welcome. I am so glad for you that you finally have the piece of the puzzle that was always missing. It's sad that your family have no acceptance of this; I doubt that this is your fault though. People see what they want to see. Get on with your life, don't get stuck on wanting their approval. It takes a while to absorb the reality of late life discovery. Many of us went through a grieving process - all the waste of the past, the misdiagnoses, the mistreatment we experienced. However once you come through this, life looks and feels a lot better. Wishing you a smooth journey from here.

Don't blame them too harshly, 10 years is a LONG time to be dealing with one problem, not that I'm meaning to belittle your diagnosis. I'm happy you've finally found the culprit for some of your problems. It could just be the monotony of the constant treatments and issues that have burnt them out.

A roommate of mine, (who is someone who our family has known for years) was diagnosed with stage 4 lung cancer over two and a half years ago. They gave her 6 to 8 months tops. This woman has always been a pill, but our family has never been known to leave someone out in the cold, so we took her in and have been taking care of her all of this time. She is abrasive and ugly, but uses this diagnosis as her excuse. To most people on the outside, they would look in and see a woman in her 60s battling cancer (A losing fight from the start) and say "Aww, she's so brave and such a wonderful person" having never known her. We are finally nearing the end. She has finally given up treatment and we've brought in hospice, but everyone in my family (Including the NTs) are ready for her to go. It sounds ugly, but a bad situation, made worse by constantly getting hung up with doctor visits, false treatments and diagnosis gets tiring over time. Half of us are ready to pull our hair out, and again, it's only been 2 1/2 going on three years.

It sounds like in your situation, they've dealt with breakdowns, depression, anxiety bipolar issues, They've been there for all of your losses, and despite how horrible it sounds, they've likely become accustomed to labels being put on your problems. Most NTs see a disorder, they read about the side effects, but they can't really comprehend living with those side effects. They want you to be able to move on with your life and find success and happiness as you once obviously had. You, however, cannot move any faster than you're allowed. You need to take your time and realize that NTs may never be able to realize the internal barriers and walls we have to break through to do some of the most basic things they do every day.

Take some time away, move in with some friends, (or complete strangers) or if you can afford it, find your own place. Give yourself space and in your own time, start constructing your life without your "Constructed Self" Find a job you can be comfortable in, find another person who will accept you for who you are. It's very difficult and taxing to try to act like something you're not, and when you find an environment where you can be yourself, you'll find you are more productive and happy.

Again, don't take their disinterest to heart, they are just hoping you'll find what you need, and get your life back on track.

Yes I can see it from my family's perspective. I don't play the victim card and I play down my difficulties but the years have taken their toll. It's just ironic that being on the spectrum explains much of my years of mental illness. So in this case the 'label' of AS is welcomed since it's not a disease it's just being wired differently. An earlier diagnosis may have saved years of mental illness but that's life.

I didn't go looking for this diagnosis, it's been given to me and its a blessing. I'm so fortunate to know even at this later stage of life and it will make a positive difference. I don't need the validation of my family and can 'get' their illness fatigue. So it's a journey I'm happy to take alone for now.

The 'constructed' me wasn't functioning anymore anyhow. It may take sometime to drop my mask and shell completely and discover my true nature. At least I realise that my need to be in my own company and head space most of the time are no longer selfish indulgences. Dealing with social interactions are still going to be a challenge but without my 'eager to please' mask on they may be better for it. Even if that means taking a back seat and appearing aloof.

Thanks for your wisdom and advice. This forum site has been a great help.

Last edited by glennj on 19 May 2014, 7:03 am, edited 2 times in total.

This is wonderful advice. I needed to hear this, too. I think your correct when you say that people see what they want to see. I find that to be true no matter what I do.

I'm 47, realized I have AS last year. I've been trying to get an official diagnosis ever since but my health insurance is lousy. It would cost me a fortune to pay for it all myself. When I found out I cried almost everyday for two months. I couldn't leave my apartment.

I've crashed and burned. I can't pretend anymore. I'm almost a recluse. I do go to my doctors and therapist appointments, take free classes once a week at the library and try to get out more. I feel a little better than I did during the winter.

I've tried explaining Asperger's to my family but they don't have any idea what I'm talking about.

So you're not alone. A lot of us go through exactly what your experiencing right now. There's a very good topic somewhere on this forum about emotional burnout. Reading it helped me to understand what I'm going through.

Good luck to you.

As I just turned 29 and was planning to move out of my parent's house, my mother was being given a ton of different diagnoses and I was tirelessly researching what was actually wrong with her because the "experts" kept contradicting each other. I then stumbled upon Asperger Sydrome by accident and turned white as a ghost when I read my autobiography. I did not tell anyone because I was not about to diagnose myself but I eventually told my family once I consulted a few "experts" who knew less than I did. I literally became my own expert on Autism I was so obsessed with researching it and usually lectured and corrected the psychologist I was seeing. Bottom line: I'm not formally diagnosed but it's now beyond obvious I have it.

My brother looked at it and said 'yep, that's you' but he still seems to have the attitude that it's something I can easily control as if I enjoy embarrassing myself and being unable to make friends. My mother went into massive denial and still to this day feels that I just have very mild symptoms and refuses to discuss it. They keep giving the same useless advice like "you are just shy", "you need to get out more" or "you just need to change your attitude". My family fails to realize that it doesn't matter how many people I meet, I desire deep interaction and I just CANNOT make friends no hard I try. As a result, I completely crashed about 2 months ago and have been struggling to just get out of bed. I seem to me able to get along with people as long as I keep the mask on but it's shredding my real face and is exhausting. I just want someone to accept and like me for who I am especially since I am a good person and a loyal friend.

To paraphrase a line from The Simpsons: "I want friends, but as the real me, not as some yahoo from Green Bay"

Hi GiantHockeyFan.

It seems your family shares with mine in their reluctance to accept our condition and difficulties at the moment. I feel and share your pain.

It's probably understandable why our families react this way, in that for all our lives we've learned to act out social interactions by aping NT's including around our families. We learn to mask our differences and difficulties in order to 'fit in'.They just don't see and understand the constant difficulties we have communicating with people or the huge drain on our energy levels and anxiety it causes. After diagnosis we can at least accept we have little control over this.

I'm older than you, and I'm at a stage where I no longer have a need or desire to reach out to others and form close friendships. Its never worked for me and I doubt that it will in the future. I'm lucky. I have a partner who loves me and accepts me as I am and gives me space whenever I need it. That's enough for me. When I was your age I put huge amounts of energy into socialising. I had some success in making friends but they never developed into close ones. My social awkwardness due to AS may have contributed to their failure to flourish but it was more likely that they failed because I never truly valued my friendships. What I mean by this is that I'd more often than not turn down social get togethers with friends when I needed 'me time' or recovery time (which is frequent). If I'm honest I simply didn't feel the exhaustive energy needed to find and maintain friends was worth it.

If you're high functioning and committed enough I'm sure lasting friendships are definitely possible for Aspies. Maybe if we're honest and open with our friends about our difficulties that may help. I hope it works out for you!

As for our families maybe they'll eventually come onboard and learn to see life from our perspective. Especially when we purposely lose our masks and just be ourselves.

The bolded part really resonated with me. My family does NOT want to accept that I have Asperger's (they are not unintelligent people, but are uninformed enough that they believe it to be a "mental illness"). After explaining (several times) that it is not a mental illness (or even a significant disability, since I am pretty high-functioning), but just a matter of having different wiring in my brain, I finally gave up talking to them about it, for the most part.

At one point my sister (who has a grown daughter who is bipolar and has been through utter hell with her) demanded to know why I thought I had Asperger's. "Uh.....the therapist who diagnosed me?" Apparently her daughter uses her bipolar disorder diagnosis to excuse a lot of pretty heinous behavior, and other times uses it as a crutch or a way to get out of being responsible for herself. At no time in my life have I ever done any of those things, and I'm not about to start now, but the diagnosis is SUCH a relief to me. It's an explanation for why I've always been slightly out of step with the world, and it allows me to stop beating myself up for being that way.

Well, there are a few explanations.

One, people are horrible.
Two, most people have trouble with abstractions and fine distinctions, and don't want to be bothered anyway.
Three, most people go into anaphylactic shock if you suggest that they aren't damn near perfect, or that you (who are associated with them) are not similarly damn near perfect.
Four, most people don't want to be bothered with other people's problems.

My ex-husband was diagnosed with GAD and depression after becoming more or less nonfunctional, which wasn't a new condition for him. He went on disability, had trouble leaving the house, couldn't be left to care for our daughter, was just Not There some of the time, and was, all around, a slowly-cooling mess. It was perfectly obvious to anyone with eyes that he wasn't going to be "pulling himself together" anytime soon.

His parents, both psychologists, flatly refused to believe this (which is part of why, to this day, we don't speak -- I kept rubbing "he's disabled" in their faces). His mom kept sending him job listings. Neither wanted to believe how much help both he and I needed, considering we had a baby and, with him disabled, not enough money. My relationship with them essentially ended in a restaurant, at a meeting in which I was laying out plainly for them his problems in day-to-day functioning -- his mother jumped up and accused me of lying, and left the restaurant. Later they decided I was a malign influence making him sick. That was their story, and they stuck to it, even though he was on disability for years after we divorced, and even though he'd been hospitalized repeatedly before he met me, and even though he was 40 and still bringing his laundry to his mom's house. I never thought about this before, but I suppose it's possible they kept up the blame when they talked to him after the divorce, which might help explain why he was just so angry and hateful for years afterwards, even though it was his decision to divorce -- angry to the point where I had to stop letting him into my house -- which, of course, has affected our daughter, and not made life so pleasant for me, either.

In the end there's nothing you can do, though I'll admit that in recent years I've enjoyed rubbing it in pretty hard when someone like that turns up with one of those ordinary human problems that isn't under anyone's control and doesn't go away.

Even if I had Tony Atwood himself diagnose me, my mother would STILL not believe it. I can hear her now "he's just like the rest: making up diseases to get you to keep coming back". Never mind the fact ALL THREE psychologists I went to tried to discourage me from coming back at first since I did act "normal" and I had to insist from my Doctor I needed medication and help even as someone generally opposed to pharmaceuticals. She still thinks I am just shy and Autism is only for people who can't take care of themselves at all or have low intelligence. I even talked to them about how I have had suicidal thoughts and tried medication for severe anxiety and they STILL downplay what I am going through she had a VERY rough childhood and survived it. Again, it's not a case of me spending 10 minutes on Wikipedia: I extensively researched it and showed line by line how I meet ALL the diagnostic criteria.

I can understand how your family feels. They are least likely to be sympathetic to your issues because they spend the most time with you. You are just YOU to them and so despite what you tell them that will never change. I feel the same way about my father who is alcoholic. I know alcoholism is a disease and we should show sympathy with them. I know that theoretically but am I pissed off at him for totally messing up my upbringing and his own life. Totally!

I second what structrix said.

Families get used to family members over time simply because of how long they spend together. Habits, behaviors, quirks, are all already a part of everything so in some ways, it's like explanations for these things are very liable to get shrugged off as, "So what?" in the sense of, "that's redundant; tell me something I don't already know."

When I got my dX and shared it with my siblings whom I consider to be really close to me, they both went, "Huh? So what? You're you." to which my response was, "So now I know."

Right, it's like getting a jacket blurb when you've already read the book. But I think the OP was talking about something different, where she's got a family that isn't so accepting of how she is.

Ironic, given how NT's are supposed to be great with empathy. Seems to support the notion that empathy only works between similar people, rather than being some magical, near-psychic ability.

... I think I need to learn to finish my thoughts before I stop typing.

When it's something redundant or, in this case, perhaps seems redundant, there's no - incentive - to 'learn more', 'really understand', or even 'listen closely' because - like the analogy you made, what's the point of reading a jacket cover when you've already read the whole book? The sum of a whole person is more than just a dX sort of thing; the dX is just a way to explain it.

But this can affect what 'support' is given like the OP is talking about.

True, some of it is quite possibly insensitivity (not caring) and the whole thing with the concern of using dXes as crutches, but part of it is probably also desensitization to the issue on a whole to the point of possible burnout.

Squid expressed this thought much better than I ever could.

In my case, just because my family said, "Huh? So what? You're you." doesn't mean they automatically went, "Okay! Now we fully support you!"

It was more like, "Okay, so what? (... Now get on with life because that doesn't change who you are! You've been quirky and possessing XYZ behaviors and mannerisms for forever!)"

It was a significant discovery to me in my adult life and a major eye-opener and it left me reeling for some time as I tried to digest everything.

It also made me seriously consider the fact that maybe getting some professional help would be useful and so would a change in my profession, but these were major life-changing thoughts that I ended up ultimately dealing with alone as to most everyone else in my family, the dX 'should' have had little to no impact.

"Just do what you're doing because you're fine, right?" sort of thing and like the OP, I 'coped' and managed to 'put on a face' (mostly owing to my work environment) and probably also because of this, the whole, "You're fine regardless of whatever dX you get; just get on with it!" mentality and attitude is quite prevalent though never in those exact words.

But the fact is is that it does; it does have an impact and I can empathize with the OP and their struggle in getting support and I am sorry it has happened to them.

It isn't fun and though we should feel overjoyed at finally knowing (at least for me, knowing is a huge stepping stone as it allows me to learn better in regards to coping and managing) and be able to share this joy at knowing - especially with those whom we are closest to - it is very disappointing to experience otherwise.

But they are them and we are ourselves and at the end of the day, we might as well privately celebrate the victory of knowledge and... well... move on armed with this new knowledge and with a better arsenal in terms of how to cope.

six years ago I was diagnosed with aspergers at the age of 46. I always knew something was wrong with me. But does not support me at all. I have asked here to go mettings with me or read books about it. and has no interest at all. I am lonely and and need help