How to cope with the reaction to a diagnosis?
inmydreams
Yellow-bellied Woodpecker
Joined: 17 Feb 2014
Gender: Female
Posts: 56
Location: Nr Oxford, UK
I have been finding it really hard when people say things like "I have a really good radar for people on the spectrum. You're not on the spectrum". Or just the simple "no you're not"...
I know people try and flatter each other, I observe it to be so especially with women... So, are they thinking they are saying something kind/flattering? Are they misinformed about what it means to be on the the spectrum? Are they annoyed that I've been diagnosed? It's sending me kind of crazy. I am overthinking what they mean and I find myself trying to explain why I was diagnosed and get myself into an awful muddle.
And then I start getting paranoid that I'm some kind of hypochondriac and that maybe they're right; I question whether I was being myself with the Psychiatrist who diagnosed me because why would she see Autism where others don't...? Then I remember that I only told her a fraction of the things that I struggle with and she said I was 'definitely on the spectrum' and I calm down...a bit.
But why do people feel that they can say these things? I would never tell someone they weren't on the spectrum who'd just told me they were. It seems unthinkable to do so. People have always felt they could tell me what I am though - it's been a pattern throughout my life. Has anyone else experienced that? I sometimes think it's because I either stare blankly back at them because I don't know what to say, which I assume gives them licence to do so... Or that I explain why I don't agree with them and although I can feel really upset, apparently I just seem cross.
I feel really fed up and wish that when I feel overwhelmed from dealing with people like this, that I could just drop out for a while and not see anyone at all.
I'm really hoping one of you understands this!!
I think, in part, that NTs love talking in extremes ("You are SO ___" or "You are SO NOT ___"). They fail miserably with the shades of gray where most autists actually live.
_________________
Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)
inmydreams
Yellow-bellied Woodpecker
Joined: 17 Feb 2014
Gender: Female
Posts: 56
Location: Nr Oxford, UK
The only time I have had a problem like this is when I told a friend that I am autistic and he said that I'm not, he actually thought that I was insulting myself because he had mostly just heard "autistic" being used as an insult like "ret*d". I explained what autism actually is and it turns out that he has quite a few autistic traits himself, although I don't think he has enough to be diagnosed.
I would suggest coming up with something to say in situations like that before hand so you will be more prepared.
_________________
Also known as MarsMatter.
Diagnosed with Asperger's, ADD, and Generalized Anxiety Disorder in 2004.
In denial that it was a problem until early 2016.
Deviant Art
I generally don't tell many people either, but close friends deserve to know and if you are dating someone then that definitely needs to be disclosed before you can think about marriage.
_________________
Also known as MarsMatter.
Diagnosed with Asperger's, ADD, and Generalized Anxiety Disorder in 2004.
In denial that it was a problem until early 2016.
Deviant Art
Basically, you know you have an ASD - other people don't because they don't know you inside out like you do. Never doubt yourself. And, to be honest, it doesn't matter a flying fig what other people think.
I find that generally most people have heard of autism, but they don't actually know much about it. Most people associate a name for something with stereotypes, instead of realising that autism is a very wide, varied spectrum and every autistic person is different. What's even LESS understood is autism in women, as you mentioned. Most people envisage autism as extreme and almost always in boys and men. Women in autism are very poorly represented, supported and understood, but we do exist (like you and like me - hello!)... even by the experts and services dedicated to autism.
I'm a NT who studies the sociology of autism. My little brother (an adult) is autistic, I married an autistic, several of my in-laws are autistic, and I've always had autistic peers, friends, and mentors. I think I have a pretty good "autism radar."
A couple years ago I was in a sociology class. We have to talk about what we study in there, so it was known that I study the sociology of autism from a critical perspective (I won't bore you with more of that unless you're interested). Several classes go by. Then a girl who sat directly across from me, who I liked and talked to frequently, "came out" that she was on the spectrum. I had had NO IDEA.
In my discipline, it's very rude to make assumptions or comments on another person's identity, either physically or inner. So I didn't make a comment either way. I just hoped very hard that I hadn't said anything that offended this girl. She was always very nice to me, so I was probably okay.
Most people don't have this heavy social taboo on making comments on another person's identity. They feel like it's friendly and helpful to give input. If I were you, I would say something like, "That's not true in my case." or "Well, yes I AM on the spectrum. [change subject]"
I agree with not disclosing unless you have a reason to disclose. It can be more headaches than it's worth with casual acquaintances.
What a surprising extended family! You must be the world's best "cruise director" for autists.
Too late! I was so thrilled with my diagnosis (which confirmed all my self-identified characteristics and co-morbids) that I disclosed to more than 30,000 readers of a Utah LGBT magazine (which ended up getting added to a Wikipedia.org article about my LGBT political career). My reason for disclosing was because I wanted to add another face to autism, and because I have lived a very public life. As such, while I keep my private matters private, I wanted to disclose my autism before others did it for me. I respect not disclosing unless there is a reason to do so, but, with two percent of most populations being autistic, I believe that we need to cultivate and encourage disclosure by those who can and choose to do so. We all look up to Alex Plank and John Elder Robison, so we should gently encourage the next generation of out autists.
_________________
Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)
There is one thing that is passing then there is another that is not everyone with autism acts the same way.
_________________
ever changing evolving and growing
I am pieplup i have level 3 autism and a number of severe mental illnesses. I am rarely active on here anymore.
I run a discord for moderate-severely autistic people if anyone would like to join. You can also contact me on discord @Pieplup or by email at [email protected]
inmydreams
Yellow-bellied Woodpecker
Joined: 17 Feb 2014
Gender: Female
Posts: 56
Location: Nr Oxford, UK
Thanks everyone...
I also got a little carried away in the first few days after my diagnosis and told a handful of people. All people I am close to...
I had a positive response from a couple of friends and my daughter who hugged me My family and a couple of other friends made me feel very uncomfortable. I regret telling anyone really besides my partner (who was neutral) and my daughter. Nobody else needs to know but I REALLY admire those that do tell people and help adjust the misapprehensions.
I wish I was braver and didn't care so much how people respond. If someone says something *incorrect* I can't help but correct them! I find myself maddening sometimes! And all the unnecessary over-thinking...
Anyway, I appreciate your replies, thank you.
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