ASD diagnosis (reactions from those around you)

"You mean you didn't know??" was the most irritating answer I got...

Your words describe me exactly, too. If I didn't constantly push for an assessment I'd still be in limbo wondering while I'm different after 50 years of frustration.

Underwater said:

getting my head around 50 years of hurt

That's exactly what I've been doing. I feel let down by the system that for so many years just gave me pills. No-one even suggested ASD, and I saw many  professionals.  All that time I knew I was different, as did everyone else, with so many of them rudely saying so.  I really struggled.... alone!

I hope things improve for the next generation.

Ben

I am very careful of who I disclose to. Ive been very lucky with the main response being.."Oh that makes Sense" Trouble is sooner or later Ill get the sort of comment you did. Its a minefield. Im very recently diagnosed, so Im concentrating on getting my head around 50 years of hurt first. Theres only so much hiding hurt, one can do but at least it all kind of makes sense now. 

"you know, I think I'm a bit autistic too".

"Aren't people with Asperger's geniuses of some kind".

"but you look so normal".

This one was interesting, "I don't think you realise the extent of your autism, you've got a lot of problems".

Sometimes I think it's easier to say autism as opposed to Asperger's for some reason, although I will never tell another person, everyone around me directly knows and it's just made me a target, especially as the more stressed I get, the more obvious it is.

☕Tassimo ☕ said:

you may be one of the fortunate people who have a close family/support network in which everyone is super interested in each other

I think I am  and in everything else they are.

But still, when it came to support and understanding in my diagnosis, lots was lacking. I needed it to help me accept the diagnosis and to align the past with this new information. I think with more support I could move on easier. We're close, but aside from my daughters, I'm reconciling everything by myself.

But, still not disagreeing with your points.

Ruth, my diagnosis was for my peace of mind, I don't tell anyone.

It is surprising just how much better I now feel about myself.  Assessed nearly two years ago, I  look back across my life (nearly seventy years) and now understand so much better just who Ben is.  Ancient angst resolves as knowledge brings understanding, and I'm still learning. Of course, not everything can be put down to ASD, but I'm gradually making sense of it all.

Ben

Tbh my friends, a lot of my friends, already suspected I was on the spectrum long before I was diagnosed.

as one said ‘some people are high functioning and some are very very high functioning.’ Being frequently described as the real life Sheldon Cooper may also have been a clue.

I've not had an official diagnosis, but after months of research and having scored highly on every ASC type test I've been able to find I'm 99% certain that I'm on this spectrum somewhere. The problem with telling anyone isn't going to be the lack of an official piece of paper I don't think - more the fact that I'm able to mask exceedingly well, to the extent that I can appear quite extroverted. Of course what people don't see is that after a few hours of this I head off home and take to my bed for most of the rest of the day. Even when I've hinted to people that in reality I'm a 'little introverted' (deliberate underplay on my part) they look at me in total disbelief.

Reactions I got were people generally not being surprised.  Everyone thought I was autistic, and mum did and the reason she didn't put me in for a diagnosis as a kid was because of the experience she had getting my brother's ASD diagnosis as his autism stands out a hell of a lot more than mine does, and she had to fight for it (we're talking even going to tribunals etc).

SA, you may be one of the fortunate people who have a close family/support network in which everyone is super interested in each other. I know these relationships do exist (and not just in the movies). I've not seen this  play out in my experience (up to an including my own diagnosis). The default position for most people is, as I say, is usually at best mild curiosity or indifference. People, despite what we may think, have far less interest in us than we imagine. Occasionally, I've experienced resentment or disbelief from certain people, but those were few in comparison with the reactions of vague curiosity or dis-interest.

Yes.. most of the above. It is such a complex thing, people have none or stereotypical ideas of autism.. Where I work they have tried to support me .. but haven’t invested in getting autism training for management and policy makers.. I work in education as a teacher of.. ironically.. young adults with SEND.. many I teach have autism diagnosis too.. yet the management lack the sensitivity or knowledge to adequately support me. I had been asked to find training for them and assured it would be especially for the management and HR.. I chose NAS autism awareness training.. was told it was booked for July. then.. things went quiet at work .. when a colleague asked about when things were going to take place, he was told the autism training wouldn’t be happening until September because that’s when the Teaching assistance would be in .. I thought ‘but they aren’t the ones setting policies and procedures. They aren’t the ones to understand about reasonable adjustments’ They aren’t the people you’d told me would be getting the training  it gets worse .. they then didn’t tell me that the NAS training wasn’t going to happen (finances wouldn’t fund it) so they allocated some in house “Autism strategist” to do the training.. and hadn’t even informed me of the changes.  So from the NAS autism awareness training.. they decided to do their own .. calling it “supporting an autistic colleague in the workplace”.., guess what? I am the only autistic colleague in that workplace.. and the management and HR won’t be doing the training.. talk about shifting the target audience. Plus imagine I was the only Black colleague.. would they have be reconsidered the name of the training “supporting a Black colleague in the workplace “.. I’m totally burnout from their lack of support and lack of implementing all the reasonable adjustments that were in my occupational health report from nearly three years ago.. so understanding even in areas you’d expect to have a good basic understanding sadly in my experience are not there.

☕Tassimo ☕ said:

One thing I will say is that if you're expecting people to care about your diagnosis, then you'll be disappointed.  They may consider it in a fleeting moment, but, while it is important to us, it's not usually important to anyone else.

Yeah, my expectations were too high. I'd been struggling for a long time and personal communication was getting harder and harder, I couldn't stay in a job properly and was starting to break completely - which is why I finally pursued the diagnosis.

I thought that my parents, close family and close friends (all of whom I've known for 20+ years) would be more responsive. I'd confided in close friends. I didn't expect people to be fawning over me, but I was hoping that they might be supportive and able to engage a bit about it as I was trying to understand and relate to past issues. I thought they might say "ah, that's why you do this" and maybe be more understanding about certain things.

That said, I do completely get and understanding your point.

My family have been supportive. The only person who has been difficult about it—is me. I still have moments where I don't accept it. One thing I will say is that if you're expecting people to care about your diagnosis, then you'll be disappointed.  They may consider it in a fleeting moment, but, while it is important to us, it's not usually important to anyone else. At best, I think all we can hope for is a reaction of mild curiosity or indifference.

I found that no one I mentioned it to before the diagnosis or told afterwards believed it and still don't (apart from my two daughters, who absolutely do). So, either my diagnosis was incorrect, I'm a fantastic masker, or those around me can't see it for whatever reason(s).

One friend said "no you're not", another said "everyone's a bit autistic" and my family haven't really entertained the idea of me having Asperger's.

Aww thanks Sphynx, appreciate your support :-)

Ok.
I was just trying to formulate some thoughts on the differences between receiving a diagnosis during the pandemic/lockdown and how it might have been different if the 'rest of the world' had been in a more normal state of affairs.

I feel it would have been quite a lot easier if the world, as I understood it, hadn't been in a massive state of flux...

oh lets see. mid 2020.

Hi Ruth,I’m really sorry you’re going through this. I have also had difficult responses to disclosure, and I know how tough this can be. Some of these reactions include:

• I would never have known.
• you don’t seem very autistic.

• but you’re so empathetic!

• But you can be really chatty.

• but you were really confident and bubbly until you were 12.

• but don’t you just struggle with social interaction because you’re blind?

• but lots of people have intense interests/sensory sensitivities, And they are not necessarily autistic.

• what’s the point in having a diagnosis?

• I think everyone has a little bit of something in them. 

And the killer:

•I think of autistic people as people who really can’t engage with anything. 

I think many of these come from misconceptions, some of them innocent enough, others potentially harmful. Remember that you don’t have to single-handedly educate society. i’m not saying this is what you do or how you feel, but I know it can be a tendency of mine, and it’s a mammoth, exhausting, and ultimately impossible task to perform alone.

I hope the responses to your post can help lift any sense of loneliness that comes with all of this, and perhaps some of the confusion and weariness as well. always feel free to reach out if you need to. Good luck with everything.

"Is there anything I can do to help?"

"I wouldn't have thought it in a million years."

"I bet it's good now you have finally got some answers."

"It doesnt change who you are."

"I bet lots of people are on the spectrum but just get on with their lives and don't know any different"

"Ok....."

"If you pay for a private assessment, thats probably why you got a diagnosis"

"I'm not shocked, just surprised" then when this conversation was referred to the following week -"it wasn't a surprise, I was totally shocked".

"That's really interesting, I think my dad is. Tell me more".

For the most part, there wasn't really much of a discussion afterwards. I sensed people didn't want to put their foot in it, didn't know what to say or didn't believe me.