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?
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.
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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.
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!
I personally don’t care about disclosure, almost everyone I know knows about it, but I’m a really open person.
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.
Sounds a lot like what it’s like here in Sweden.
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.
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?
They might be trying to ensure that the symptoms were not a result of prolonged childhood trauma, so they might ask about very early developmental signs.
Hmm yeah, that’s a good point, my assumption about why they wanted to know wasn’t really fair.
Thank you so much for sharing your experience!
A formal diagnosis will get you learning assistance in school and give you added protections at work. If you’re in the US.
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.
Another “no idea about the situation im CA” comment, but I think this is pretty the same everywhere (in Western countries).
- If you don’t think it will help you to know for sure and you don’t need others to adopt to your needs and you don’t need therapy or even medication, there’s no need to go for a diagnosis.
- If you’re diagnosed, that’s between you and your psychologist/psychiatrist (and maybe your primary care taker and, if you need them to pay for it or further therapy, maybe your health insurance).
- If you decide to go back to school one day, a diagnosis could help a lot with adopting it to your needs. Well, the same should be true about your employment but that doesn’t always work out and as you say it could also have negative effects. Not sure if CA has employer protections for cases where disclosing such a diagnosis would lead to negative outcomes.
Personally I suspected I have some ASD symptoms but that I actually have ADHD. But now it’s clear I have no ADHD and I will learn later today whether I get clinically diagnosed with ASD. By now it’s clear I have some symptoms very strongly, some rather mildly and some probably not at all. Knowing this has already helped me deal with myself better (e.g. less fighting against my nature where I now know they’re lost battles anyway) so the formal diagnosis matters less at this point. But it would enable me to get more insurance-paid therapy to start into this “new life” and I could make some demands at work of I feel them necessary (currently that only includes keeping a fixed/own desk when we soon switch to shared desks, but that might change the more I learn about my needs).
In your situation, particularly if you’re hesitant about seeing a professional about this, I’d read some books on the matter. I think there are three important categories and I recommend reading at least one of each: 1) scientifically(-inclined) ones that explain the “theory” (like those by Atwood), 2) first-hand experiences (auto-biographies and such) and 3) guidebooks (how to deal with it as an adult or as an employee or such).
Edit: Oh, I forgot one benefit of being formally diagnosed. Or maybe they’re two. Autism fairly frequently comes together with other psychological syndromes/whatnot, and a psychologist should be able to identify them which might further help you. Autism also fairly frequently is the cause for other psychological illness and a formal Autism diagnosis might speed up your access to help (and medication), e.g. when you suffer from depression.
Edit: oops, it’s ASD in English, fixed
I was about to rip you a new orifice for telling OP not to go for formal diagnosis but then you mentioned cost. It sucks for you Yanks. Do something about it.
It costs in Canada too. I had to pay a psychologist her rate for therapy sessions for maybe 5 sessions total when I did my assessment. Mental healthcare isn’t viewed as real healthcare here.
I was told I’d have to either pay 5k or go through CMHA.
It’s taken about 2 years but I am getting an assement in October. Free. I can’t say if it’s going to be a good assement, and it’s been a really messy process so far and I am guessing their funding was nuked by our premier. But I’ll take it over paying 5k.
But now it’s clear I have no ASS and I will learn later today whether I get clinically diagnosed with ASS.
Please dont use ASS as an abbreviation lol
Oops, it’s ASD in English (but ASS in German)
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
It’s a double edged sword for sure. I need weigh my options and pick my own path for this.
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I feel I can actually call myself autistic now without any imposter syndrome
This was the first main benefit for me. After that, I could focus on learning as much as possible about being autistic. Then, I started tailoring my life to best fit my brain type. It has made so much difference. Now, I’m in therapy with an autism specialist to make further changes.
I also finally received ADHD meds which have vastly improved my life. I hadn’t realized how difficult ADHD was making my life until I finally achieved the ability to focus without the need for an innate obsession or the anxiety of letting people down. It’s a whole new world.
Thank you!
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.
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.
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