Coming to terms with autism diagnosis

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Purplemist
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07 Sep 2022, 7:46 am

I found out a few days ago that I've got autism, I haven't got the reports yet. I'm feeling very lost, don't know what to say/when to tell people (e.g. family). I'm not sure if I want to share it with my GP or CMHT. Does anyone have any advice?



klanka
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07 Sep 2022, 7:51 am

I wouldn't share it with just anyone because then people can say 'oh you don't understand this situation because of your autism' if they are dishonest, or looking to explain something away.

Other people have had negative things happen too. I thought that sharing it with your employer would be good, someone here had a negative experience due to that.



Purplemist
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07 Sep 2022, 8:08 am

I'm happy to share it with my uni, but I'm concerned it might rule out things like talking therapy. On the positive it might make them less likely to hospitalise me.



Fenn
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07 Sep 2022, 8:29 am

Welcome! You told us.


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Purplemist
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07 Sep 2022, 9:39 am

Thanks, I've been telling people I've met over the internet on forums, and the disabled students group at my uni (I have physical and MH issues too).



Double Retired
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07 Sep 2022, 9:53 am

Welcome to WP!

Share your news with specifically those you want to share it with.

And, if your displayed age is correct, then it would appear you've been muddling though life adequately well. There are probably some things you wish had gone better but, nonetheless, you've already gone far.

Medical providers. Sigh.

I had been asking medical providers to put stuff in writing for me. I was asking for that long before I learned (at age 64!) that I was on the Autism Spectrum. Sometimes they did but usually they did not. After I learned I was on the Spectrum I mentioned that when I asked them to put stuff in writing—I figured that would make it clearer why they should put stuff in writing for me. Still, I usually do not get stuff in writing. :(

I found the following things that look to me like they could be useful when I deal with my medical providers:
<=>- AASPIRE's Healthcare Toolkit "Caring for Patients on the Autism Spectrum"
<=>- "Comparative Pain Scale" Available on multiple websites.
For the former I take a printed copy and a separate page of personal notes about how parts of it especially apply to me. For the latter I take at least one printed copy.

I can't say my medical providers have shown much interest in either. :(


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Purplemist
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07 Sep 2022, 10:50 am

My age is correct. I get overwhelmed when I go outside, only go to one familiar place. I'm doing Open uni, but that's really flexible. My mental health is not good, and I'm a wheelchair user, so I haven't been doing well at life. I'm hoping the autism diagnosis will let me explore support/coping mechanisms to do things like go out. Thanks for the tips!



Elgee
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07 Sep 2022, 11:02 pm

Like you, I'm a "late" diagnosed woman. Something must've made you decide to get an autism assessment. You must've felt different, maybe even alien, from other people for most of your life. Along the way you picked up some facts about autism and realized that you were probably autistic. Your quirks, oddities, strangeness, unique challenges AND strengths....now all have a NAME: Autism Spectrum Disorder.

You can either detest it or embrace it. I embraced mine! And I don't "have" autism. I AM AUTISTIC. I bought several autism shirts to celebrate. One of them says, "Autism is nature's way of offsetting the excessively large number of boring people in this world."

EMBRACE it. Your mental health will thank you. While I was waiting for my asessment, I actually was hoping for the diagnosis, and thought it'd be SO COOL to be autistic. Why not? People are going to think I'm weird whether I'm autistic or not, so I may as well be autistic!

You don't need to tell your GP. What purpose would that serve? Unless he was part of the diagnostic journey? Otherwise, there's no need to disclose it. If you're aching to get it out to some family members, then do so.

I told one of my sisters. A few weeks later I asked if she had told her kids (grown). Her reply: "They've always known."

We discussed this, as I was rather shocked, since our contact has been limited by geography. She said "Everyone's known for decades." The diagnosis got leaked out to my brother's daughter, but my sister wasn't the one who told her. This niece was not the least bit surprised.

What's really odd about this is that I don't have the stereotypical mannerisms or an odd gait. But somehow, they all knew that I was very likely on the spectrum.

OWN IT. EMBRACE IT. WELCOME TO THE CLUB.



Double Retired
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08 Sep 2022, 8:15 am

Elgee has good points!

I was also delighted by my diagnosis. Like many on WP I had long suspected I was "different", it was a relief to learn officially I was right! And the diagnosis explained so much. Since I was 64 when I got the diagnosis I did not consider it a warning of difficulties ahead that I would have to get past but rather an explanation of the difficulties behind that I did get past.

I admit I think I've done well despite Autism. The only disappointments with the diagnosis are (1) it would've been nice to find out a decade or two sooner and (2) I was so hoping it would give me an excuse to deny being human...it didn't.

I waited until the holiday season to tell my family since I'd be seeing most of them in person. I should not have waited. They already knew I was odd. Their reaction was to try to figure out if my diagnosis included any medical clues about them. (I got my diagnosis right before the Pandemic began so it and I have not gone out much. I'd prefer to tell acquaintances in-person so I can see their reaction...but I'm pretty sure they already know I'm odd, too.)


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Fenn
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08 Sep 2022, 12:50 pm

If you are in a wheelchair you already know what it is like to be handicapped. People see your chair and the make assumptions - some of the assumptions are right and some are wrong. They may assume because you have a chair you cannot do things that you really can do, or feeling modern and open-minded they may try to treat you “like everyone else” but some things really are hard, and you might appreciate respectful help.

They might want to “help” in ways that feel rude. They might not know HOW to react so they stay away.

Telling people you are diagnosed with Autism can be like that.


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Purplemist
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08 Sep 2022, 1:09 pm

Thanks Elgee. What made me get assessed is that my psychiatrist suggested I might be autistic. Thanks for your reflections on embracing the diagnosis. My GP and CMHT probably do need to know, as I have MH conditions, and autism excludes other diagnoses.

Thanks Double Retired. It's good to hear you've done well despite autism. I'm still thinking about telling my family.

Thanks Fenn, that's a really good analogy.



Double Retired
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08 Sep 2022, 8:47 pm

Purplemist wrote:
Thanks Double Retired. It's good to hear you've done well despite autism. I'm still thinking about telling my family.
I've done well in many respects...not all. I was never good at socializing or romance.

I am a clear MBTI INTJ with the "I" and "T" being very clear preferences so, to some extent, I mostly felt a desire to be social because that was what you were supposed to do. The Pandemic has given me a wonderful excuse to hole up at home and I like it...and I mostly prefer to only interact with my bride and only in the evenings when my Aspie thinks I should be doing recreation (like watching videos with her) because that is the routine that grew out of decades of not being retired.

Romance. Sigh. I tried. I really did. I was very unsuccessful. There were gals that interested me and gals that were interested in me but the overlap of those two sets didn't really exist. The few gals I got actually involved with set off warning bells that suggested to me I should not tie my fate to theirs. Around age 40 I'd given up any hope of marriage.

Then there was a party where I met a nice gal and had a nice chat with her...but I was not expecting to see her again. It turns out she was disappointed I didn't even ask for her phone number (eek! It didn't even occur to me!). A few months later she needed a favor and realized that guy she'd talked with might be able to help her and I'd given her enough clues that she was able to contact me...and when she did contact me I figured out a second way I could help her but it would require us to meet in person. I am now married to her and I will get in trouble if I suggest that I would've wanted any other outcome. :wink: So: It is a good thing I did not find someone before her because she is the one I needed. But, boy, there was a lot of unlikelihood in our getting together...many, many unlikely things had to align.

Professionally I was also lucky. Computers interest me, I'm good at programming, and I was able to enter the field before PCs and the Internet took over everything. Just a lucky special interest and lucky timing.

Regarding your family... Do they already think you are odd? My family had long thought that of me. "Autism" just gave the oddness an official name but, realistically, no action was required on their part. And, not much action was not required on my part, either. I'd already built myself a life. The label just helps me understand the trip to get here.


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CockneyRebel
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08 Sep 2022, 10:21 pm

Welcome to WP. Be careful who you tell at first.


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Purplemist
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09 Sep 2022, 5:37 am

My family know I've been assessed as they contributed, but I've only told one of them about the diagnosis.