Do your friends/family doubt your diagnosis?

[PinkPenguin29]

Have you ever talked to a friend or family member about your diagnosis only for them to say, "no you're not," "you're too hard on yourself," "I don't see that for you," ?
I've had all these said to me by friends and family and it gets very confusing. Some of them have known someone else on the spectrum so I feel like they apply those particular traits to their schema of Autism and if I don't fit that schema then to them I can't possibly be autistic.
So far only another friend also on the spectrum and my sister have been non judgmental and supportive when I talk about it, and I worry (probably too much) that others that I told think I'm a little nuts, or attention seeking. I received my diagnosis as an adult, but I kind of knew I was 'off' since being a child. And honestly learning about Autism and myself has been more of a relief than anything else. It's frustrating because I feel like I want certain people, like my father to understand. I had tried to talk about how things were off for me when I was a teen and he blew it off. Recently When I told him, he said the "I don't see that for you," and I got frustrated and asked him, "how much do you know about Autism?" and he admitted "nothing".
Aside from this my dad is wonderful so I'm not seeking a hate on my dad party, but all the same I'm frustrated.
sometimes I tell myself to let it go and just accept what I know about myself, and other times I'm frustrated.
Does anyone else have this issue? or?

 

[Major Tom]

Yes, they doubt/refuse it even though I've been diagnosed 3 (yes you read it right) times. Once at 12 and twice because I rejected it at 37 and 38.

 

[Aspychata]

l told my mom this and she shot me down in 2 minutes. lol. She preferred me to be unhealthy. Easier to deal with.

 

[Progster]

I don't tell family members except those very close to me. I tell people about my diagnosis strictly on a need-to-know basis. When we were looking into the possibility of my having Asperger's, my family were in a agreement that I probably had it, and the fact that a teacher had pointed out autistic characteristics in me years ago backed it up. My sister at one point said that I wasn't like her friend's little boy who was diagnosed with Asperger's. Such comments can be invalidating and not helpful, but I guess she was just trying to make me feel better about it.

 

[Qoyote]

If anything they thought things would be worse. You know, early 2000's, everyone knew about autism by then but there was no way to talk to actual people. I was in special preschool cause I couldn't talk. Some of my classmates still can't. Fortunately they got me an IQ test. I know people think those are vain, but I couldn't give them anything else.

I denied that it was still affecting me for so long, I'm uncomfortable talking about some stuff with them now, but that might just be me. I don't know.

 

[Raggamuffin]

I've found the more open I've been about it, and discussing it in depth - the more those closest to me have come to understand.

I'm still awaiting an assessment, and initially my parents were sceptical about it all. I think they're of a generation who see a stigma attached to Autism, I also wonder if they might view it as a reflection of them as parents.

Friends have been more accepting of it all. It's been quite refreshing talking about it to close friends and reading and understanding more about Autism on this forum and in books.

Out of everyone who's been most dismissive, I think my mum and my ex have been the hardest to open up to. Even though I've shared a lot of information with both of them about what I've learned and how much I can relate to various aspects of the spectrum - both of them have continued to trivialise or dismiss a lot of what I've found to be of real importance.

Ed

 

[SDRSpark]

I'm self-identified, not professionally diagnosed, and I always presented it as "I suspect that I'm autistic".

I'm almost always met with a chorus of "you're just quirky!" "no you're not, you're just different!" "you don't need a label!" and so on and so forth. (Oftentimes this comes from people who are most likely autistic themselves and don't want to admit that.) People definitely have an idea of what "autism" looks like (which is usually wrong) and they think "autism" is a dirty word.

 

[selena]

Not me and not autism, by my family previously commented on other people's mental health diagnosis as an excuse for their obvious laziness, etc. I tried to tell them a few times in my 20s that we have a history of mental health problems in our family and that IT'S OK to acknowledge it and to begin going to therapy, but they just laughed off my attempts. Looking back, I think that was the beginning of the breakdown of our relationship.

With a few acquaintances I sometimes talk to, I can see them rejecting the autism label on me, even the one whose cousins are officially diagnosed and who also struggles with fitting in (one reason we became friends to begin with, although she's more conventional than me in many ways and is doing semi-ok now).

 

[Aspychata]

My family defintely made me feel less than. It took many years for me to feel better about myself. I managed somebody's business and medical career, and every decision was on point. Proud of myself. Try to not let this label set you back.

 

[OkRad]

Some family believes, others no. Old therapist have shot me down even though the ones I Went to were wayyyyy above their pay grade heehehehehe

 

[1ForAll]

It could be any number of reasons why Parents do not admit or outwardly support the formal diagnosis

--They want you to not focus on that, thinking it's irrelevant to how they or others should treat you
--They do not want you to be defined by that, or thinking it will give you reasons to not be your best in life.
--They are embarrassed at the label, because of stereotypical views
--They are not aware that Autism can present itself in different ways, contrary to stereotypes
--They do not want to admit they messed up in not seeing the signs of Autism earlier
--They think that label may adversely affect your employment future, should those others know.

Those are a few reasons I can think of off the top of my head.

 

[_eri_bellehumeur]

Yes to literally all of this. I have always been a very different sort of person, and learning about autism was the most comforting thing because suddenly I wasn't alone. It affected me so deeply to finally have some kind of explanation and a place where I felt I belonged, which was something I had never in my life felt before- it was after months and months of daily research reading everything I could find that I was finally able to say for myself that I am autistic, and when I started telling people very close to me like friends and siblings, they all tried convincing me otherwise. It's weird, because both friends and siblings have teased me (sometimes good naturedly, sometimes not) for my "eccentricities", so to an extent they know my struggles, way of thinking, and unusual behaviour but they can't accept that all of these things are explained by autism? It's baffling. In the same vein as well, the people telling me "no, you're not autistic" are people who either know absolutely nothing about autism, or had a classmate in elementary school with autism and now they're somehow experts on it? Ugh.
I'm half-heartedly trying to get a diagnosis now, though services for adults are limited in my city and I'm hitting roadblocks constantly, so am more than likely just going to accept being self-identified and say screw what everybody else thinks about it, lol (admittedly, services for autism are limited where I live, so my want of a diagnosis is maybe 80% spite).

 

[ForestGumpett]

My husband is 100% supportive, our life has been easier because we now communicate better thanks to figuring this out. He now “gets” why I don’t get some things, and why I do some kinda odd things - prolly ocd. He thinks he may have a bit of this, he’s quite smart but can only check about a third of the boxes, I’ve checked all but about one or two. I trust you less if you do not look me in the eyes, so the look into the eyes thing doesn’t apply with me.

My other family, they have been horrible. They were horrible before so it really didn’t make much difference I don’t believe. One acted like they cared, but then found out they have tried to take large sums of money from me so.....I’m done. Accept the things I cannot change and wisdom to know the difference, this is where I say bye.

 

[Rahere]

The exact opposite in my case. I question my diagnosis.
1. If you can't understand me, that may be your problem and not mine, doctor. That EEG you took shows I'm using all my brain. You're only using a tenth of yours. So you literally cannot comprehend all I do. I have two identical computers, the same in all descriptions, except one has an put of date operating system which can only cope with a tenth of the memory available. Which of the two's dysfunctional, disordered? Exactly.
2. You just told me I've a top IQ. How is it that in the next breath you tell me I'm mildly high-functioning Aspie? Which is now being dishonestly termed autistic. Firstly, they dismissed high-functionality, because nobody knows anything about it, which just leave Aspie, which is redundant as a result. So I'm simultaneously a top intellect and intellectually challenged? I'll tell you who is intellectually challenged, it's the lazy xyzs who came up with that simplification.
3. Some of my traits are not neurotypical, but advanced tranception, Maslow's teanspersonal writ large. Master-level Reiki and what you call hyperperception, which you saw in action. In plain terms, I'm a seer medium with a decent share of the 2012 Nobel Peace Prize to my personal credit: I actually made the join between East and West Europe. But nobody's studied high-performance as far as I can discover. The closest is the Koestler Institute, which has given up because the numinous won't constrain itself to the bounds of science. Again, question your lemmas, please.
4. The history of disagnosis starts with Dabrowski's over-excitability and then dumps prejudice in a Krupke mode on top. When I look at the results, meltdown, I see trauma from the diagnosis and its consequences and some overload from the neuroceptive system triggering the IAS freeze response. Why has nobody asked these questions?

 

[PinkPenguin29]

Yes to literally all of this. I have always been a very different sort of person, and learning about autism was the most comforting thing because suddenly I wasn't alone. It affected me so deeply to finally have some kind of explanation and a place where I felt I belonged, which was something I had never in my life felt before- it was after months and months of daily research reading everything I could find that I was finally able to say for myself that I am autistic, and when I started telling people very close to me like friends and siblings, they all tried convincing me otherwise. It's weird, because both friends and siblings have teased me (sometimes good naturedly, sometimes not) for my "eccentricities", so to an extent they know my struggles, way of thinking, and unusual behaviour but they can't accept that all of these things are explained by autism? It's baffling. In the same vein as well, the people telling me "no, you're not autistic" are people who either know absolutely nothing about autism, or had a classmate in elementary school with autism and now they're somehow experts on it? Ugh.
I'm half-heartedly trying to get a diagnosis now, though services for adults are limited in my city and I'm hitting roadblocks constantly, so am more than likely just going to accept being self-identified and say screw what everybody else thinks about it, lol (admittedly, services for autism are limited where I live, so my want of a diagnosis is maybe 80% spite).

Nice to know I'm not alone on this, like me having a diagnosis means I'm seeking attention or something. And I'm not seeking attention, I just want to be understood by my family.

 

[LadyS]

I've told only close family only. I'm afraid of telling friends for the same reasons among others. I have friends who like to minimize your hardships because they want think they've had it worse than you. And I have friends who would believe me but then patronize me and treat me differently because they don't know anyone on the spectrum, nor have been taught to accept what's different.

 

[CynthiaC]

It's a big world out there...I don't know how to articulate this but what I see is that not enough people know about the spectrum of autism for many reasons:
1. Doctors, researchers, clinicians got it wrong. It can look different in girls, and high functioning has a whole range of abilities not even known, looked at or discussed.
2. As a result, we've been conditioned to think autism is a little boy spinning train tires, flapping his hands and not speaking.
3. We don't feel comfortable explaining how we are autistic because of the stigma, but also because it's us, and how do we know what we do is any different than another human? It's not autism, it's just us. How do we know what is unique to us? It's our own experience.
4. @Rahere...yes, exactly...who is a doctor that doesn't have the function you do tell you you are "intelectually challenged" in your functioning? That's also part of the stigma...autism may be a different set of abilities, or a different perception of the world due to many factors, but it's just different. There needs to be no judgement or comparison to it.
And yes...I have had that comment from people many times, in terms of myself and my daughter...I relate it to stigma and misunderstanding and I think self-advocacy breeds understanding, but it's not easy. Stay the course.

 

[Rahere]

@Rahere...yes, exactly...who is a doctor that doesn't have the function you do tell you you are "intelectually challenged" in your functioning? That's also part of the stigma...autism may be a different set of abilities, or a different perception of the world due to many factors, but it's just different.

It's not just that, it's the fact Attwood and co can blithely move the goalposts without the least academic support for it, and fail to recognise in doing so they have a moral obligation to rediagnose their patients. If they don't know what they're talking about, why don't they stfu?
I don't dispute I can do stuff many folk can't. The studies explain why, and my core persona is normal, just bigger. It's the weird stuff we need help on.

 

[CynthiaC]

Totally get that. As a clinician (Speech and language) mother of a daughter with ASD, and a suspected self-diagnosis of ASD myself...I can say what I see from my vantage points. Clinicians often don't see the "weird stuff we need help on" because it doesn't often pop up in a clinician's room...it can take a long time before becoming apparent, and it's best worked on in real world, practical situations. I even missed a lot of what my daughter was going through because it happened at school, or during play dates where I wasn't even a fly on the wall. That, and...clinicians are taught to follow a medical model (here's what's wrong with you and how to be 'normal' but we need to change to a strengths based approach where we work with individuals on their perceived needs and interests, not the clinicians. Anyhow, a whole other topic.

It's not just that, it's the fact Attwood and co can blithely move the goalposts without the least academic support for it, and fail to recognise in doing so they have a moral obligation to rediagnose their patients. If they don't know what they're talking about, why don't they stfu?
I don't dispute I can do stuff many folk can't. The studies explain why, and my core persona is normal, just bigger. It's the weird stuff we need help on.