Diagnosis rejection is a personal rejection

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Malus
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05 Feb 2024, 10:01 pm

An autistic friend recently told me that I (37M) was on the spectrum. (Pretty much, "btw, you're autistic.")

At first, I was confused, then I began to think and research. As of now, I'm self-diagnosed and waiting for an appointment with a doctor to confirm.

When I mention it to family or friends, I usually get something like, "you're not autistic. You're just..." fill in words like: smart without common sense, rude, weird, quirky, socally awkward, etc.
My favorite was that we're all a little autistic.
Um.. autistic traits are human traits. We are, contrary to popular belief, humans.
I was like, damn mom, I'm autistic, not a ginger. I still have a soul (jk. My wife is a ginger)

Anyway, I guess my point is how bad and mad it makes me feel that I FINALLY found something that explains a lot about myself and people either invalidate the diagnosis, my feelings, or my symptoms. Literally my wife was the only person who was like, "Duh" when I told her and she has been much more accommodating.

I'm not trying to take on some label for "likes." I'm not defining myself by a diagnosis. But it has silently been and will continue to be a part of who I am.

If you want to hate me or help me, fine. But how does everyone cope with the deniers? A lot of times I want to scream (in Cartman's voice) "Screw you guys, I'm going home."



valen
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05 Feb 2024, 11:16 pm

It does feel pretty terrible.

Well, that's an understatement, considering that prospect is half the reason I don't tell most people about my diagnosis still- and why I told only one or two people the theory that I was almost certain of prior to the actual testing.

I think 'We're all a little autistic' is always my least favorite one too, even though it's theoretically more accepting. It just hits peak invalidation, as well. As though if you might count, then well, so should everybody else.

I would guess it's much harder when you haven't yet gotten it formally. When you do, there are a lot of responses you can be more confident in. "Sure, everyone has some level of autistic traits. Some of us are autistic, though." and such.

It's also good to be able to fall back on the evaluator as an expert.

When my mother asked suspiciously why I sounded so confident that I was autistic, I was able to tell her that I had an evaluation. She asked what they tested, and I told her that they had done many different tests that took hours. I thought she would ask for more details later, but that seemed to be enough for her.

She said "The thing about you was, you were really smart... but you never did have any common sense."
Which was good enough for me. It's interesting how the exact same words can be used in favor or against.

So, I suppose at least *my* mom thinks you have autism?

With that, it's possible that yours will come around as well, once you have more "hard evidence" to back it up with. I know mine did used to tell me that kids with even medium-functioning autism were "normal kids", so she might have had a similar misconception, that more information can help with.

However, I know some do hold these beliefs with a lot of tenacity.


Having personally known some people who did take on the label for the equivalent of "likes" or other manipulative goals (and of course used it to take advantage of autistic people) makes me probably too understanding of people who are overly critical of these diagnoses. The sad thing is, if you were lying, it might actually make it easier for you to convince them. You would, you know... have less impaired social skills. And it would hurt a lot less when they reject you.


So, I don't have any particularly awesome coping strategies. I think what I did was a combination of "tell no one" and "read a metric ton of research papers so that I could back up any arguments with ironclad science". These strategies don't really amplify each other, so I'm not sure I recommend the combination.

I would say though, while you are still hashing out how this fits into your identity as you portray it to the world, it's alright to take it slow on "coming out" to others. It's as you say: it's silently a part of you, whether you tell them or not. In the meantime, I hope you could find community and validation with your autistic friends irl, as well as in places like this. They can help you come up with a lot of good scripts for every deeply frustrating response.

Welcome to the Wrong Planet. Where you have always (silently) lived, of course- but only recently discovered.



MuddRM
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06 Feb 2024, 1:11 am

I normally won’t tell anyone, except on a need to know basis. My pastor knows, since i also told about the continuous glucose monitor I’m wearing (since I’m using my iPhone as a meter, and it emits a loud obnoxious sound if my blood sugar is too high or too low.), as well as a few other people in my church. At least they are understanding about ASD, as there is a kid (about 9 or 10 ) in the congregation that is high functioning.

I spoke to the lady I ride to church choir with, who’s a retired elementary school teacher, and teaches the elementary school-aged kids in Sunday School. I told her about some of the so-called medical activities my youngest brother and his wife put their son and daughter through. The do subject those kids to chelation to make them neurotypical. She must have done some research, because she was horrified by that treatment. I also let her know that I have not seen those kids in almost 15 years, sine that brother and his wife, in addition to the rest of my immediate family, have deemed me persona non grata, and disowned me, let alone think I’m a useful person to society. They kick me out of mom’s house due to me being depressed, as they consider depression, as well as any abnormal behavior to be a form of laziness. Try telling a Pa Dutchman otherwise is like talking to a brick wall.



autisticelders
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06 Feb 2024, 6:21 am

most of the deniers are putting some sort of stigma on the autism diagnosis, and trying to make you "feel better" through ignorant statements. Most of the people in the world have very little understanding of what autism actually "is" and most will not bother to educate themselves. Ignorance accounts for most comments. Others will never be as interested or excited about your diagnosis as you are. For them it may mean a lot of changes and demands for doing things differently rather than accommodate. For them, it is still you, and the you they know and most are uncomfortable with change of the "status quo". For many, our talk about our autism is the same as when we want to talk about any other interest... eye rolling and not interesting to them. (think about grandpa talking about his most recent operation, about others talking about things we are not interested in )... What is intensely interesting and exciting to us may not be personal rejection so much as simply not understanding the earth shaking feeling inside when we get the new perspective on our own lives because of recent diagnosis. A great place to talk about all things autism is autism message boards, chat rooms, social groups on line, etc. Other autistic folks understand and have insights and experience to share. Don't take it personally if somebody seems to dismiss your diagnosis, your struggles, your newfound self discovery. They very likely still care, they just don't understand or care about the topic and can't see what a huge self discovery our diagnosis is, and what it means to us.


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ASPartOfMe
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06 Feb 2024, 9:14 am

Welcome to wrong planet.

Stigmas are bad enough. What frustrates me is the stigmas about autism conflict. You have both the autistic as ret*d stigma happening at the same time as Autistics as special people with superpowers.


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rse92
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06 Feb 2024, 1:30 pm

More evidence for the proposition that you should reveal your diagnosis/self-diagnosis to as few people as possible.

I told my daughters, my wife, and my ex-wife, each of whom has disclosed to a few other close family members. I have told one of my five brothers (who has an autistic daughter), I did not tell my late mother, and I have not told my father. What good would it do?

I have disclosed to other autistic people and to autism services organizations.

Disclose on a need to know basis only.



elotepreparado
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07 Feb 2024, 5:28 pm

I don't know if I exactly deal with deniers. Maybe I should?

I don't usually disclose naturally unless I sense a person I might become friends with or might work with is getting anxious or creeped out by me. I let them know as like?? a heads up? a disclaimer, even? So if they know a bit about autism then they might relax a little and pay more attention to my words instead of my behavior and tone. But I will share right away if someone else in the group is very open about their ADHD or ASD.

It has only happened a few times where someone was like Really??? or You don't seem autistic? or There's no way..
and each time I usually shrug and say It is what it is or something.

Maybe two or three times in recent memory has someone told me that they don't think I am autistic. Or that there is no way I am because I can go to school and stuff. I just say Ok. And Whatever. If they aren't my boss, professor, doctor, or whatever then it doesn't matter too much as long as they don't continue to bother me. If they continue to bother me on it, I guess I would have to confront them and ask why it matters so much. But otherwise, I wouldn't mention autism at all if they aren't too bothered by my behaviors and speech.

My mother-in-law doesn't believe I am autistic. But my husband had to get screened multiple times as a kid because his teachers and doctors suspected he had autism. He is less obvious than me in his speech and behaviors and is less sensitive. But his mom still somehow can't imagine that I was diagnosed... She said "It's a personality! I see it all the time in our family!" and I had to keep my mouth shut. I almost laughed at that.
If she gets upset about it again I will probably fold and lend her my big stack of paperwork from diagnosis and therapy dating from 2011 through to today because my autism hasn't gone anywhere.



VictorOfAveyron
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11 Feb 2024, 8:57 am

Trying to simplify a bit, is there a need to deal with the deniers? I don't try to accomodate to rude and ignorant people, neither do I try explaining planetary movements to flat-earthers. I try to move on and deal with people I think it is worth to deal with.



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11 Feb 2024, 2:17 pm

I'm not sure I would share a self-diagnosis. And if I did share it I would qualify it as a "self-diagnosis" that might or might not be right (not matter how sure I was).

When I first started reading online about Autism and noticed that it sounded like me I asked my bride to read about it, too. She agreed it sounded like me. But at that point I would not have spread that information.

Next step was AQ which strengthened my opinion...which lead me to seek a formal diagnosis.

I'm willing to share the formal diagnosis.

I think it would be harder for people to argue with a formal diagnosis.


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gloomaglisten
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11 Feb 2024, 4:03 pm

I got that from my therapist...she basically said "wow, you must be very high functioning...I do a lot of the things you just described too, so maybe it's just overdiagnosed!" or something to that effect. I actually got ahold of my hospital records from when I was diagnosed so she could see the criteria used during my evaluation, but I don't know that she really looked very closely at them...so at this point I just try not to bring it up with her, or at least avoid labelling it as autism when I do talk about my autistic traits. It felt very invalidating and hurtful, but I just ignore it and don't really worry about what she thinks about it. It has made me nervous about telling anyone else though.