People don't believe I'm Aspie

[Leelu]

I'm a 52 female and self-diagnosed myself a year ago as being Asperger. I now suspect I have Alexithymia as well. Reading other people's stories I see so many life experiences that closely mirror my own, but I also took all the online tests and scored well within the spectrum range on all of them.

A problem I'm currently struggling with is getting people to believe me. My husband is the only one who seems to, though I suspect he's not 100% sure. My sister doesn't really get it. I told my Dad but he won't believe anything unless it comes from a doctor (and seeking a professional diagnosis isn't practical or desirable for me ... it wouldn't change anything). I haven't told my mother because I suspect she's also on the spectrum and haven't had the energy for opening THAT can of worms (though I do believe it's up to her to find her own truth). I've told several friends/acquaintances and got reactions ranging from dubious nods to a straight out, "No WAY you are! I know people who are and you're definitely NOT!"

So I guess what I'm wondering is, short of a medical diagnosis how do you gain support and understanding from people? My husband and I are relocating to be close to my family (we currently live on opposite coasts of the US), partly because my meltdowns and depression seem to be getting more debilitating and I need/want support from my family and the few friends I have left. They of course don't know that's a reason for our move (there are many many reasons to leave California) but it feels like ever since I realized I'm on the spectrum my issues have gotten worse ... perhaps because I recognize them for what they are rather than hating myself for being a freak/loser? (that's a whole other conversation). I'm just worried about myself and want to be accepted by my family I guess -- I moved to CA in my 20's because I felt like they'd never accept me for who I am. But much has changed and I want a better relationship with my parents for the time we have left.

I'm also wondering IF I'm actually able to make new friends when we move, how do I talk about it? I tend to be way too trusting of people and have been burned so many times I generally keep my cards close to my chest. I also don't feel strong enough to wave my spectrum identity from the rooftops, but sometimes feel like if I can give a reason for my erratic behavior it might help people understand me better, especially when I disappear for awhile I want people to know it's because I don't have the energy to be social or leave the house (or my bed), not because I don't like them or don't care.

Thank you.

 

[Judge]

So I guess what I'm wondering is, short of a medical diagnosis how do you gain support and understanding from people?

The short answer? You don't. With or without a formal medical diagnosis.

You eventually learn through a series of negative experiences to keep it to yourself, other than to relate your Neurodiversity only on a need-to-know basis only.

Coming to terms with a Neurotypical world that is likely to view you in one of three ways:

* Some will to want to understand you and succeed in doing so.
* Some will want to understand you and fail trying.

* Most will not understand, and likely be indifferent to how you think, and expect or even demand for you to adapt to their way of thinking because in their mindset it's the only way of thinking.

My cousin that lives in town I've known since I was a toddler has more than 20 years of medical insurance knowledge. She doesn't particularly believe in high functioning autism either and tends to marginalize it- and me if I ever bring it up in discussion. On the other hand I told my own brother, and he seems to get most of it. Go figure.

I'll discuss it quite transparently here. But anywhere else? Forget it. Hopelessly risky business.

 

[Fridgemagnetman]

I sometimes wonder if this is how we victimize ourselves.

Ypu habe something to tell, what you say is rejected or ignored.

You look within : I didn't do it right, I didn't explain it... next time it will work...

We can get caught up in that cycle of thought and repeat that experience of rejection.
Often resulting in self vicimisation,thoughts of why me?

How to break the cycle one wonders...

You're in luck. You found a place that can help.

Read the board, make a few posts, try and find out what you need to learn to make that change.

 

[Juliettaa]

Trouble is sometimes, our expectations are too high and when the support doesn't materialise, we're crushed.

I don't know the answer to how you can get people to understand and support as from reading your post, apart from your husband, all of the other people you've shared with sound completely ignorant and I'd be evaluating what they bring to my life before I move forward with any relationship with them. But that's just me. You could try obtaining reading material for them to educate themselves? There's loads of stuff online. I've got a table of female Aspie traits and it really helped to see that visual where I highlighted traits I have. Most of the page is highlighted yellow!!

May I ask why, if people have been dismissive of you, are you moving? You may be setting yourself up for more hurt?

I get you when you say -

but it feels like ever since I realized I'm on the spectrum my issues have gotten worse ...

I found that too; much worse since I got the formal diagnosis. But I've put it down to 'yay, I can finally just be me instead of pretending'. And since then, I've settled somewhat.

Give yourself a break. Re-evaluate your expectations and put yourself first. Always.

 

[Progster]

One thing that I wish to point out here, is that people often don't say what they think, but rather what they think people want to hear, or what social convention dictates that they should say. So perhaps those people who tell you that you can't possible have it and just saying so in order to keep with social convention?

Another reason is ignorance. People don't really know what autism is. They imagine that all autistic people are Rain Man or something like that, and because you're not an exact copy of rainman, they think you can't possible have it.

Also, parents are often in denial: "My Son? My daughter? Autism? No way. We'd have known if he/she had autism". They don't want to admit to the possibility of having made such a mistake of not spotting the autism. Again, this is due to misconceptions as to what autism actually is.

 

[WereBear]

I found that too; much worse since I got the formal diagnosis. But I've put it down to 'yay, I can finally just be me instead of pretending'. And since then, I've settled somewhat.

I am thinking that is me, too: I've stopped burning up energy "passing" and can let my freak flag fly.

I only tell people if I think they will "get it." I think it's a testament to the quality of my friends that most of them did get it.

 

[Judge]

Another thing to objectively come to grips with are "the numbers". Those who constitute a neurological majority and we who constitute a very small neurological minority in society.

In other words, ignorance and indifference on behalf of so many Neurotypicals isn't something to be considered cruel or evil. It's simply that odds are most of them have virtually no contact with the Neurodiverse that they are aware of.

If the CDC is accurate in projecting that every one in sixty-eight people are on the spectrum, there's literally no incentive for them to even be aware of us, unless they have a family member or friend who is on the spectrum. A mathematically different equation compared to other far more prominent social minorities in society who may represent ten to twenty percent of the population as opposed to a single digit percentage.

Before I even began to unravel the mystery of my own autism I was one of those persons who really didn't even understand manifestations of autism in whole or in part. And given my own ignorance, I didn't perceive anyone in my usual social orbit to even be on the spectrum. I was wrong, but didn't come to recognize those in my past who were likely on the spectrum until I began to figure out who and what I am.

 

[AO1501]

The partners where I work know that I am on the spectrum, but they make no concessions to it, nor do I ask them to. But even though one or two of my colleagues know, they still expect me to behave and think the way they do.

I live alone, so there is no-one at home to deal with, but if my wife was still with me, she wouldn't have believed me if I had told her, she'd have said I was making excuses for myself.

I have two daughters, one knows (and she is on the spectrum too) the other doesn't because she would find it difficult to deal with and would worry unnecessarily. I have few friends, but I told them all, one of them is totally accepting and makes allowances for the fact I am different, another is totally blasé about it, and one said I was making it up and that it's just 'a typical cancerian man' thing.

In my experience, people not on the spectrum have no concept of what being autistic really means, and even if they know someone on the spectrum, have little or no idea that it is a neurological thing, and that it means we see everything in a fundamentally different way. They expect that we will behave, think and act exactly as they do, and be disturbed when it becomes apparent that for reasons they will fail to comprehend, we don't.

I think people in general are very accepting of things they can see, but are largely blind to the things they can't.

 

[Mary Anne]

Without a proper medical diagnosis, it’s unrealistic to expect people to believe you. Even with a diagnosis, people will often not believe, cuz you won’t fit whatever stereotype they have of the label. Personally, I would give up on the notion you are going to change minds and hearts. Just be you and either get a proper diagnosis, or just live life to the best you can. I try an avoid as many negative people as I can, because I cannot change them.

 

[Leelu]

May I ask why, if people have been dismissive of you, are you moving? You may be setting yourself up for more hurt?

Lots of reasons to move; the biggest one is that we're priced out of California and if we stay we'll end up living in a van down by the river. My husband is working 2 jobs and we never do anything together anymore and I (for some reason!?!?) can not find a job. If our financial situation can improve, hopefully our lives will improve. Also after the fires we experienced last year (one was in our little mountain town) I just don't feel safe here anymore ... living with your car packed & ready to go at a moments notice is just more than my anxiety can take.

But moving to be near my family ... yes it terrifies me. I've always had a really complicated relationship with all of them but in the end I love them. I realize my parents did the best they could for me as a child with the skills they had -- neither had parents who actually parented them, and as I said I suspect my mother (and her mother) is on the spectrum as well. Both families were extremely dysfunctional. And we all know now that in the 60's & 70's autism was only rarely a diagnosis, plus I've always been good at masking.

And I have always been the peacekeeper, the one who wants to help everyone heal. I believe we are born into our families for a reason and think I've shirked my responsibility towards them for long enough. I've lived far away for almost 30 years and have been able to become the person I am, and have figured out my **** enough to be able to stand my ground about who I am. I'm not saying it's going to be easy, in fact recently I've spent some intense time with them (2 weeks helping my parents do a major move, for which they were not at all prepared and during which my mother was in meltdown mode) and it was the hardest thing I've done in a long time. But it was also gratifying to be able to help them and touching that they actually appreciated my help enough that my Dad cried while telling my uncle how they couldn't have done it without my help.

It boggles my mind that I can remain hopeful and optimistic when most of my life has been one ****** thing after another. But besides my husband, I really only have my parents and my sister and for better or worse they need me and I guess I need them.

I just know if I stay here in CA my resentment for all the people who have blown me off and disrespected me will continue to grow (I'm an artist and trying to be part of a community has been a very hurtful experience) as will my hatred towards all the Silicon Valley stuff that's absolutely ruined the Bay Area for everyone else.

So maybe (probably?) I'm completely deluding myself about moving ... I know it's going to be difficult and painful and there will be unforeseen consequences, etc. But, maybe ... just maybe something good will come of it. Just. Maybe. I just know if I keep on the way I am right now I'm not going to live much longer. It's time to jump one way or another.

 

[Leelu]

People don't really know what autism is. They imagine that all autistic people are Rain Man or something like that, and because you're not an exact copy of rainman, they think you can't possible have it.

Also, parents are often in denial: "My Son? My daughter? Autism? No way. We'd have known if he/she had autism". They don't want to admit to the possibility of having made such a mistake of not spotting the autism. Again, this is due to misconceptions as to what autism actually is.

I totally agree with all you've said here. The media has not helped anyone understand what autism can look like. I mean look at me: I was 51 years old when it occurred to me that I was on the spectrum, and I've been searching for answers about why I feel like such a freak ALL MY LIFE. So clearly I didn't recognize myself in any of the portrayals I've ever seen.

Plus I think I felt very early in life that love was conditional and based on good behavior. So I was always the "good" girl, the quiet one who didn't cause any trouble. I masked every urge to deviate from what was expected of me. But I was recently given all my report cards from all my school years and the comments teachers wrote in them are so revealing to me.

 

[Leelu]

Thanks all for your comments. I guess it made me feel better to vent about this whole thing since I have no one else who understands that acceptance or the lack thereof IS indeed a problem.

I'll just have to figure out how to make the few people that matter to me understand ... books and articles are a good idea. I have been sending them to my sister occasionally but I'm not sure she always reads them. There was a good one about autistic inertia (Autistic Inertia) that I sent her and she was actually pretty astounded by that. So, maybe there's hope.

As for friends I'll keep it on a need to know basis. When I first figured it out I was probably blurting it out inappropriately to acquaintances because it was a HUGE revelation for me but have since learned to rein it in a bit. When we move east I'm hoping to reconnect with some friends I went to college with, but am not intending on brandishing my autism flag. And extended family? I'm not sure I'll even be reconnecting with most of them much less divulging this information ... they are evil selfish people who would most likely gloat and gossip about it.

So thanks again for all your insights.

 

[Zuliac]

I do not know if you will be comfortable with this, but would it not be easier to just tell them you got diagnosed?

Sure, it's lying, but it is your truth and it will make your life a bit easier.

The greatest thing about extreme isolation is that no one really knows anything about you, and the people won't expect much by way of conversation or explanation. Use it to your advantage.

You are on the other coast. Medical files are confidential.

"Did you see a doctor?" "Yes."

Done.