this post was submitted on 22 Aug 2023
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I've been wondering for quite a while if I have autism or not as I seem to hit a lot of the commonly reported symptoms and experiences. I recently tried some of the self-tests out there, including the ones on Embrace Autism, and yeah, I hit every single one I tried for mild to even moderate autism. Scored 49 on the rbq-2a for example.

Now, I know that none of those tests are conclusive and I could easily be a false positive, so I'm not directly claiming I have autism. But I'm thinking the next step is probably to talk to my primary care doctor, but to be honest I'm really hesitant to/don't completely trust the mental health system in Canada. Genuinely asking because I don't really have anyone in my personal life who has similar experiences or I think would understand: what do people here think about getting a formal diagnosis? Is it always something one should pursue if they suspect they're on the spectrum? Are there any major drawbacks? I'm especially concerned about it affecting my career prospects (which already aren't great tbh, my fault for getting a science degree in an already niche field which I deeply regret but that's a different story) or my ability to take out loans or rent an apartment by myself. I don't personally see my autism (if I have it) as a disability, but unfortunately in Canada it is still very much seen as such. Who am I required to disclose an autism diagnosis if I am diagnosed?

I'm really sorry if any of this comes off as insensitive. I have never really participated in the autism online community and I am in no way trying to put down people with autism, I'm honestly just kind of scared about what this means for me. Anyone else in a similar situation, or were in a similar situation? Care to share your experiences or have any advice?

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[–] Spuddaccino@reddthat.com 13 points 1 year ago (1 children)

I can't speak for Canada, but in the US a formal diagnosis makes it easier to get prescriptions or other treatments, such as therapy.

As far as required disclosures, you aren't required to disclose anything to anyone. However, disclosing a diagnosis to an employer often opens up their ability to provide accommodation. The ADA also prevents employers from discriminating based on disabilities, and 'disability' in this context tends to be interpreted very broadly.

An example from real life: I am a manager at a grocery store, and one of the people on my team has some kind of ADD/ADHD/autism spectrum thing going on. It's pretty obvious, I recognize the symptoms. However, he has not disclosed anything to me, so I have to pretend I dont see it and treat him with the same expectations as everyone else.

If he were to come to me with a diagnosis, I can ask him how I can help him, what he needs to be able to do well, what sorts of things tend to distract him, etc.

Once again, this is all from south of the border, though, so my takeaway would be to see if there's any similar legislation in the Great White North.

[–] ptrknvk@lemmy.world 12 points 1 year ago* (last edited 1 year ago) (1 children)

I don't know anything about Canada, so can't say anything about your situation exactly.

I was in the same self-diagnosed boat as you are now and never cared to do any official steps, since it has no added value at the time.

Now I have some other mental problems and am currently at the stage of confirming my autism so I can find a therapist who'll understand me better.

[–] HiddenLayer5@lemmy.ml 5 points 1 year ago* (last edited 1 year ago) (1 children)

Yeah I also have generalized anxiety disorder. Medicated for that, and the one time I had to disclose it for something was a fucking nightmare. So honestly super hesitant to also have autism be on my searchable mental health records.

Thank you for commenting, I wish you the best in your own journey though! Hopefully you can find someone who genuinely cares!

[–] ptrknvk@lemmy.world 4 points 1 year ago (1 children)

I personally don't care about disclosure, almost everyone I know knows about it, but I'm a really open person.

[–] HiddenLayer5@lemmy.ml 5 points 1 year ago

I'd be open about it if I wasn't worried about being discriminated. Canada really isn’t nearly as progressive as everyone outside seems to think. Or I should say, it's progressive on paper, not in the aspects that actually matter.

[–] Seigest@lemmy.ca 9 points 1 year ago* (last edited 1 year ago) (2 children)

I've learned I'll be getting mine in October after being on the list for 2 years.

Since I see a lot of non Candains here I'll explain what the process was for me in Ontario.

I asked my doctor for a formal diagnosis. Since I'm around Toronto I had to apply via the mental health system there (CMHA). Alternatively I'd have to pay $5k.

A few months after applying they called asking for my elementary school transcripts and the number of a parent or guardian. I am well into my 30s. So the transcript isn't really possible. And my my mother whould be the best bet as witness to my childhood.

They called back 6 months later asking if I was still interested I said yes.

One year later another call asking for transcripts and again I tell them i cant actually get those.

Now almost 2 years later I got a calling saying the assessment is in October. It's going to be 5 hours long and they want my mother for the first hour of it.

I should point out my mother has had some extreme trauma over the past 4 or 5 years wich affected her memory. I'm also 1 of 4 kids so she confuses us often.

It's a frustrating situation because I need to be assessed based on my childhood development and I seem to be the only one who remembers any of that. I grew up in a tiny village out in the middle of Mennonite territory so my school had no internet. All the records where on paper and lost ages ago.

In terms of why I am doing this. What the benefit is? I'm pretty successful career wise and training up for a management role. I have a lot of quirks that I worry will interfere with that ambition. Knowing the specifics of my atypical neurology may help me identify and mitigate these quirks. It may also help when asking my insurance for things like extra therapy budget.

I also think it will help as I get older. Some of these quirks are getting worse as well as my stress levels and anxiety. I know there are some things about autism that get worse with age I'll need to be aware of.

[–] Buddahriffic@lemmy.world 5 points 1 year ago

The fact that they are basing it so much on early childhood makes me question what kind of benefit they can even offer adults with autism. They don't even know that to look for without going way back, so what advice can they even offer? Telling your mother how to structure your day?

[–] HiddenLayer5@lemmy.ml 2 points 1 year ago

Thank you so much for sharing your experience!

[–] TacoButtPlug@sh.itjust.works 8 points 1 year ago (1 children)

A formal diagnosis will get you learning assistance in school and give you added protections at work. If you're in the US.

[–] frogfruit@discuss.online 6 points 1 year ago* (last edited 1 year ago) (1 children)

Also worth mentioning that if you have ADHD, you get those same protections. Idk how it is in Canada where OP is, but in the US, adult autism evaluations can be hard to obtain and insurance typically will fight coverage but ADHD evaluations are easier and usually covered.

[–] 000999@lemmy.dbzer0.com 6 points 1 year ago (1 children)

Sorry, I deleted my comment.

But yeah, my main concern would be discrimination from organizations/people who have access to the diagnosis information.

But then having a diagnosis is also beneficial because the same people/organizations make accommodations for you

[–] HiddenLayer5@lemmy.ml 3 points 1 year ago

It's a double edged sword for sure. I need weigh my options and pick my own path for this.

[–] ConfuzedAZ@lemmy.world 3 points 1 year ago

So when you ask if there is a point, I think it's probably with reaching out to a local autism support group to explain your situation. I am in Canada and I have a son diagnosed with ASD. Currently we get a disability tax credit that provides tax relief that we can use to buy private services. As an adult you may qualify for a disability pension fun the government, all though i am not sure of that specifically. You didn't mention how old you are, but I would guess you are an adult. Employers are required to protect your medical disclosures, if your condition may present difficulties working in social settings, the company would be obligated to provide accommodation, which could look like work from home or a more quiet work space. I have read quite a few posts on Reddit where adults feel relief from anxiety by allowing them to put a name to the issue they face. Schools deal with ASD all the time, and provide a number of accommodations for writing exams. So to answer your question, yes there are definitely reasons to get diagnosed, only you can really decide if you want to. I wish you all the best whatever you decide.

[–] Danatronic@lemmy.world 2 points 1 year ago

One downside of a formal diagnosis is that it might make it harder to move to some countries. But if you're already in Canada then that shouldn't be too much of a concern.