Are friends or family members disbelieving about your ASD?

[Thea]

I've been really open about being an Aspie because I'm not ashamed of being different (it took me a long time to get to that place emotionally but I refuse to let go). Since I'm not diagnosed there are people who you can see just think you're a hypochondriac. I'm not less Aspie because I haven't had an official diagnosis yet. I know people in my family who listen but I get the feeling they just think I'm melodramatic. Then there are people I tell who say "You seem normal". I've had to become socially integrated, I work in retail, just because I can smile and nod, doesn't make me NT.

 

[Rudy Schmidt]

I've been really open about being an Aspie because I'm not ashamed of being different (it took me a long time to get to that place emotionally but I refuse to let go). Since I'm not diagnosed there are people who you can see just think you're a hypochondriac. I'm not less Aspie because I haven't had an official diagnosis yet. I know people in my family who listen but I get the feeling they just think I'm melodramatic. Then there are people I tell who say "You seem normal". I've had to become socially integrated, I work in retail, just because I can smile and nod, doesn't make me NT.

I find this really comforting because its me to an absolute T ("tee?"). The only difference is that I'm not at the stage were I can be open about it yet - I only recently found out about it, so I'm still afraid of the melodramatic/hyperchondriacal judgements. For now, I'd rather keep my Normal Mask on until I figure all this out for myself.

But even so, thanks for posting this - I've been really scrambled lately, and reading something that sounds exactly like me is really reassuring.

 

[Thea]

I find this really comforting because its me to an absolute T ("tee?"). The only difference is that I'm not at the stage were I can be open about it yet - I only recently found out about it, so I'm still afraid of the melodramatic/hyperchondriacal judgements. For now, I'd rather keep my Normal Mask on until I figure all this out for myself.

But even so, thanks for posting this - I've been really scrambled lately, and reading something that sounds exactly like me is really reassuring.

Thanks yourself, it's nice knowing that there's somewhere out there someone can relate.

 

[Arcturus]

I am self-diagnosed, and my friends don't believe me, thinking I imagined it and am over-analyzing myself. They think it's a bad thing to have AS and that I talk "nonsense" and that I am perfectly normal and "shouldn't worry" - while I am trying to explain how relieved and happy I am to find a niche that is truly me and how I finally don't need to take on anyone else's "normal" qualities. Never mind that I have been looking for answers for many years, and never mind that I sign under almost every word of the female AS traits. My mom is the only person who believes me at this point. In fact, it was funny when I was showing her a youtube video of female AS symptoms. She was listening, silently, and then exclaimed, "Oh my, I gave you those! And those! I am so sorry!" - about some of the traits on the list. I love my mom.

 

[Andrew_Collins]

None of my friends have accepted it since i got diagnosed 6 years ago they didn't say much when i told them. My mum and Grandmother accept it ( My grandmother referring to it as asparagus ), However my sister has been a total **** about it accusing me of being a "Fake".... she actually seems jealous of any extra attention given to me.

 

[toothless]

mine were aware am severely autistic from after two years of age,and prior to that it was clearly visible to mum and dad but they didnt know the label back then.
mum was treated like crap for it which caused her lifelong severe depression;she has never gotten help for it as she blames herself and has felt suicidal many times.
she was told she was to blame by doctors for not being much of a mother and their catholic church told them was possessed by the devil for sins done by mum and dad.
doctors told them was severely behavioraly and emotionaly disturbed for years because of parental neglect and a lack of punishment,was not purposely neglected by them;they just didnt know how to cope so was beaten and locked away in bedroom a lot of the time.

mum and dad are very accepting of the autism and ID label because am visibly affected/obvious,and they have always advocated on behalf as much as possible,even now as pensioners without their own transport they go along to every meeting of mine that the social services intelectual disability team have.

 

[icesyckel]

You hit a chord with me about how if you're intelligent then your behavioral issues must be due to bipolar, PTSD, etc.

I must confirm your perception. I'm undiagnosed Aspie. I currently carry five (yes, FIVE) psychiatric diagnoses and 15 years of experience with the mental health system. If I seriously went into a psych office and told them EVERYTHING, I'd probably have twelve or something crazy like that. Before I knew anything about Aspergers, I thought there was something so profoundly wrong and rare going on with me psychologically that it didn't even have a name....

Part of the reason I remain undiagnosed as an Aspie is just because I'm scared that either a. A psych will decide nothing is wrong with me at all because I've managed to keep functioning for over a year now with no meds and I'll lose my disability, which I do actually need until I can figure out how to do things like work a full time job in a chaotic environment with NT dreams and games everywhere without losing my mind or b. I'll get even more diagnoses tacked on and get put back on a full regimen of meds (I'm talking like six pills a day) and lose all function altogether...

Trust me, if there was a pill or therapy or anything that could make this go away, or at least improve my functioning, I would totally be on it.

I've read people on the spectrum are at high risk for certain comorbid psychological issues/conditions/disorders, which means that recognizing the AS/ASD and pursuing positive steps (e.g. education, therapy) to help you understand the ASD and to learn to wield it as a strength rather than a weakness could seriously help your other issues/diagnoses.

It is true that there is no pill for AS/ASD. Personally, I wouldn't take one if there was. I believe it adds more than it subtracts from our lives in most cases. The potential co-morbidities, though, have to go (e.g., depression, anxiety, etc.). They add nothing and take everything.

I understand the situation with disability and the difficulty integrating at work, but I encourage you not to let fear of losing that support halt your progress as a person. There are always risks on the road to happiness, but nothing venture - nothing gained. If you did lose your disability, then perhaps you could find a job working at home or in a secluded office? The bottom line is that you may have to choose between your disability check and moving on with your life, and that is a decision only you can make. Sometimes the crutches we lean on while recovering end up holding us back, and sometimes we really need the crutch. It is difficult to know which case it is.

 

[icesyckel]

Of the few people I told, only a few had trouble believing it b/c they only see the facade. Those who know me best have seen me "unmasked" and had little difficulty accepting the news and believing it.

Shows like Big Bang Theory don't help. People get funny ideas about AS/ASD. One person I foolishly told mentioned that show and said there was "no way" I had AS. My wife and parents, however, don't doubt it at all.

This is why I only share on a "need to know" basis only now. When most grandparents were our age, AS wasn't even on the DSM, and now it is gone again with the primary knowledge of the condition being eccentric TV characters who are really representative. You cannot overcome that level of ignorance on a global scale, and so I advise everyone to be prepared to educate in detail anyone with whom you share your status on the spectrum.

 

[Spinelli]

My AS is only self diagnosed. This is because about 3 years ago now when I first realized that I was different, I talked to councilors, and she talked to my parents about me seeing a doctor to figure out what is going on with me, and my mother refused to believe that there was anything 'wrong' with me. She refused to let me see someone to get checked out. A So, after a lot of research I've decided that I have AS. I haven't really brought it up to my parents since because it's easier to deal with it on my own than to listen to her doubt me. There is only one person that actually knows about me. He also has AS so I feel like he's the only person who understands it and can see that I have it, and therefore would believe it. I don't even talk to my closest friends or boyfriend about it because they probably wouldn't believe it either.

 

[rollerskate]

I've read people on the spectrum are at high risk for certain comorbid psychological issues/conditions/disorders, which means that recognizing the AS/ASD and pursuing positive steps (e.g. education, therapy) to help you understand the ASD and to learn to wield it as a strength rather than a weakness could seriously help your other issues/diagnoses.

It is true that there is no pill for AS/ASD. Personally, I wouldn't take one if there was. I believe it adds more than it subtracts from our lives in most cases. The potential co-morbidities, though, have to go (e.g., depression, anxiety, etc.). They add nothing and take everything.

I understand the situation with disability and the difficulty integrating at work, but I encourage you not to let fear of losing that support halt your progress as a person. There are always risks on the road to happiness, but nothing venture - nothing gained. If you did lose your disability, then perhaps you could find a job working at home or in a secluded office? The bottom line is that you may have to choose between your disability check and moving on with your life, and that is a decision only you can make. Sometimes the crutches we lean on while recovering end up holding us back, and sometimes we really need the crutch. It is difficult to know which case it is.

Icesyckel, thank you for trying to advise but it's way more complicated than that, and I think you misunderstood me anyway when I said I was afraid of losing disability. I don't want it, but I've accepted I need it at this time. Even with it I'm still currently homeless and having difficulty finding work. And I have worked at home in the past, and there is a lot that goes into that which most do not realize until they've actually done it. It's ok for residual but when you get into making a living it becomes expensive, time consuming, and a lot of times you still have to be social. Plus it does not play well with conditions like depression and anxiety. And if anything happens to make you lose your home, there goes your job too... And good luck getting started again when you're in a shelter...

 

[icesyckel]

Icesyckel, thank you for trying to advise but it's way more complicated than that, and I think you misunderstood me anyway when I said I was afraid of losing disability. I don't want it, but I've accepted I need it at this time. Even with it I'm still currently homeless and having difficulty finding work. And I have worked at home in the past, and there is a lot that goes into that which most do not realize until they've actually done it. It's ok for residual but when you get into making a living it becomes expensive, time consuming, and a lot of times you still have to be social. Plus it does not play well with conditions like depression and anxiety. And if anything happens to make you lose your home, there goes your job too... And good luck getting started again when you're in a shelter...

No one really understands what anyone else is going through based on one or even one hundred forum posts, especially not me (since I don't really empathize with people). I can, however, appreciate the complexity of the situation you are in. Without revealing more about myself online than I would care to, I should tell you that I have seen others in situations quite similar to yours overcome. Whether that is any comfort I do not know. What I can tell you is that every success story I have witnessed involved the person taking measures that seemed to them to be "counter-intuitive." You cannot change the status quo without doing something different, even if that something different is scary.

I don't know enough about your situation to offer any advice about what those different steps would be in your case, and it seems that the last bit of advice I did extend was less than useful, so I will simply wish you the best of luck and good fortunes in your endeavors.

 

[rollerskate]

Thank you. And I actually AM doing things differently. One of those being looking for an actual employer instead of just relying on my at home work, which was part of my pitfall when I lost my home... I wasted too much time trying to pick up the pieces on my business rather than trying to find an employer that could work with me... as well as wasted some time just trying to work for anyone, and lost a job in the process, which did nothing for my self esteem. Fortunately, I think I may have found the right kind of employer for me... it's a web app developing company full of engineers and programmers and other creators. I'm pretty sure based on the way they describe the way everything is ran (and the fact that they deal with employees that are programmers, graphic artists, programmers, etc.) that I may have finally found my niche. Instead of looking to fit the employer, this time I'm looking for the employer to fit ME, if that makes sense.

I also finally broke down to my son's case manager and told her straight up I have suspected I'm aspie if not autistic for years now. She's going to help me get set up with an evaluation. I'm also taking a whack at counseling and psychiatry again with her encouragement. She's a great case manager and I feel confident she is going to have my back because of how she's had my and my son's backs in regards to his issues.

No one really understands what anyone else is going through based on one or even one hundred forum posts, especially not me (since I don't really empathize with people). I can, however, appreciate the complexity of the situation you are in. Without revealing more about myself online than I would care to, I should tell you that I have seen others in situations quite similar to yours overcome. Whether that is any comfort I do not know. What I can tell you is that every success story I have witnessed involved the person taking measures that seemed to them to be "counter-intuitive." You cannot change the status quo without doing something different, even if that something different is scary.

I don't know enough about your situation to offer any advice about what those different steps would be in your case, and it seems that the last bit of advice I did extend was less than useful, so I will simply wish you the best of luck and good fortunes in your endeavors.

 

[Toponoetikos]

When I told my 15 year-old daughter that I thought I might have AS and explained what it was, she said "yes, that makes sense" and she also said as she did many times in the past that she had a very strange father but liked the unusual way I looked at the world. My wife does not understand AS but has not problem accepting my explanation. They both accept that I need a lot of quiet time and time alone.

The problem I am having is finding a competent psychologist trained to test. I live in Bangkok and there are cultural issues. If I tell a Thai psychologist that I am uncomfortable looking someone in the eye they would say that is normal. In Thai culture it is considered aggressive to look people in the eye for more than a second or so. I understand that it is also much more difficult to assess an older adult. So I don't know for sure if I have clinical or sub-clinical AS - what John Robison calls Proto-Aspergian. I like the name Proto-Aspergian as it sounds like a species from another planet, and I have always felt like I was from another planet .

My view of psychological diagnoses in general is that they are at best imprecise. So little is understand about the human brain that it is sometimes hard to take clinical psychologists seriously. The last psychiatrist I saw - a 75 year-old Thai doctor who was trained at Harvard Medical School told me that testing at my age would be impractical and imprecise as well as irrelevant. He admitted that it was more of an art than science. As someone else suggested, it really does not matter what others think. For me the fact is this: I relate to nearly everything I have read in this forum and the AS traits fit my experience well. Now the DSM 5 has eliminated AS indicating there is still controversy. I believe that the advances in medical imaging in the next 20 years will probably completely change or at least enhance our understanding.

It is interesting that the main solution to work problems for AS people and NT people is the same - focus on strengths rather than work on weaknesses except those that are really obstacles.

 

[Toponoetikos]

None of my friends have accepted it since i got diagnosed 6 years ago they didn't say much when i told them. My mum and Grandmother accept it ( My grandmother referring to it as asparagus ), However my sister has been a total **** about it accusing me of being a "Fake".... she actually seems jealous of any extra attention given to me.

I like the term Asparagus Syndrome. It is a good way to keep it light.

 

[karla]

Of my friends, two of them know. My parents and brother accept it too, although my father had doubts at first because of things he read on the internet, about AS people being the kind of persons that are always telling others what to do and stuff like that, and I´m not like that at all, I´m more on the shy side; I thik sometime information on internet can be tricky. A guy once told me that he didn´t believe me because he knew an autistic person who used to eat glass, and he sayed "you don´t do things like that right?", that really bodered me.

 

[Marycv]

When I was young I was diagnosed with a learning disability, and a few years ago I found out I have PDD. Since I was little until now, my dad never want to understand the challenges I have. He was in denial, and believed I made myself worse than I am. If I tell my parents the difficulties I have, they think I'm not trying hard enough. If I say something inappropriate, they accuse me of being mean. I try explaining to them, of my symptoms, but sadly they don't want to understand. They want me to be like everyone else. My parents put more pressure on me, and always in denial I have a disability like "You don't have a disability...you're only a little slow." It's frustrating when they want me to be someone I'm not or not accept I'm different.

 

[karla]

When I was young I was diagnosed with a learning disability, and a few years ago I found out I have PDD. Since I was little until now, my dad never want to understand the challenges I have. He was in denial, and believed I made myself worse than I am. If I tell my parents the difficulties I have, they think I'm not trying hard enough. If I say something inappropriate, they accuse me of being mean. I try explaining to them, of my symptoms, but sadly they don't want to understand. They want me to be like everyone else. My parents put more pressure on me, and always in denial I have a disability like "You don't have a disability...you're only a little slow." It's frustrating when they want me to be someone I'm not or not accept I'm different.

I´m sorry that´s happenng; parents sometimes are just oblivious of what´s going on. I guess sometimes they have a certain espectative or an idea of what their kids will be like, instead of just accepting them as people, but I hope you have other people to talk with that can understand you better. You can use this site for that too

 

[Kari Suttle]

My parents brought up the possibility of my having AS but they just suddenly stopped bringing it up within the week. I wasn't sure what to think and i didn't know if maybe they just decided i didn't have it or decided i didn't want a diagnosis or anything, and i was scared to ask wondering if maybe i was just supposed to have picked up something in the way they had talked about it (to show their real opinion) on my own. She brought it up once when it was autism awareness month out of the blue, saying she really did think i have it, but again it was never mentioned afterwards. I feel like its just a convenient explanation to them, nothing to figure out or pursue much less to help explain all the little things i'd love to cover with them in an in depth conversation.

My best and only friend didn't believe me either even after i listed to her all the reasons me and my parents had been over. She seemed to think i was just normal but a little odd. I had hoped, since i share everything with her and vice versa, that she would agree or at least consider it but she didn't. It hurt. So i stopped mentioning it to anyone and now i go back and forth, at war with myself really, over if i'm all imagining it or if its real. Only talking with aspies on here or seeing their videos on youtube makes me consider that i might, cause then i see so many similarities, but then i consider that if i really did surely someone would have said something when i was in elementary like with all the little kids these days. Thats how my little cousin got diagnosed. He's fifteen years younger than me though.

 

[icesyckel]

The bottom line is that most people don't know much about it, so they just think you're weird and not willing to accept you're "mentally ill." That is because you are NOT mentally ill - they just ignorantly think that is what ASD is.

For those who had disbelief from doctors - I did too. Mine didn't believe it until the test results came back. Then he was surprised.

 

[karla]

The bottom line is that most people don't know much about it, so they just think you're weird and not willing to accept you're "mentally ill." That is because you are NOT mentally ill - they just ignorantly think that is what ASD is.

For those who had disbelief from doctors - I did too. Mine didn't believe it until the test results came back. Then he was surprised.

Hi icesyckel! Can I ask what kind of test did you have? My diagnose was given to me just by talking with a specialist like for two months. I was just wondering if there´s like a medical test or something.