Self-diagnosis and invalidation from family

[Crossbreed]

I'm in Canada -- technically I could get a diagnosis covered by my insurance, but that requires having a GP to refer me, and I've been on the waitlist for one for almost four years now, so that's probably not going to pan out. Any resources anyone can suggest would be helpful!

We have some Canadians here. I am in the USA, but Google points me to
https://autismcanada.org/If they are like our autism societies, they should have a lot of info available.
Stay away from any organization that is affiliated with Autism Speaks in the USA.
Look for organizations that treat ASD1 as a difference, not a defect (a.k.a. "neuro-diversity").
https://autlanders.blogspot.com/2019/07/autism-subtypes.html

 

[Bolletje]

Welcome! Love the username.

 

[VictorR]

Welcome!

Unless you're in Alberta, given that adult diagnosis is usually done privately, try reaching out to those in your area who do diagnoses yo get on their waitlists sincevyhey can be long, and most likely, a GP would be giving a generic referral anyways, and you could likely get a referral from a walk-in if needed.

 

[AutistAcolyte]

My mum does the same thing, reframing the issue as being personal. This would be fine, except in her case it tends to turn it into a personal flaw -- like, if I really tried, I could push through and do the thing, instead of understanding that while that might be true in some cases, it's not in all cases, and even when it is, it means pushing myself to the point of meltdown or shutdown.

I'm really glad you have a supportive mum and sister though! Thank you for the support and kind words

oh, yeah... my old housemate did that a lot. he said he was supportive, but whenever i was actually being autistic he would get weird about it and we would have these drawn out conversations about how i was bothering him and needed to try harder to not bother him. i moved out recently, so that was the solution to that.

that sucks, and i completely understand what you mean :/

 

[its_about_the_cones]

Well, I wouldn't even bring it up with them, if it was me. Just let them live their happy old people lives. They have enough going on, to have a diagnosis thrown into the works. They have developed masking and coping mechanisms ingrained into their personalities in order to navigate the difficulties of the neurotypical world. It's what everyone had to do before, I think, about five or ten years ago. And we still do.

So just love them, forgive them, just smile with understanding when a big outburst or quiet spell happens. They're just trying to survive, same as us all.

That's a very insightful response, and I appreciate the support. It's true, we're all just trying our best to survive in our own way. Thank you for replying

 

[its_about_the_cones]

Welcome!

Unless you're in Alberta, given that adult diagnosis is usually done privately, try reaching out to those in your area who do diagnoses yo get on their waitlists sincevyhey can be long, and most likely, a GP would be giving a generic referral anyways, and you could likely get a referral from a walk-in if needed.

Thank you! That's very good to know, I'll do some research on what's available in my area.

 

[its_about_the_cones]

oh, yeah... my old housemate did that a lot. he said he was supportive, but whenever i was actually being autistic he would get weird about it and we would have these drawn out conversations about how i was bothering him and needed to try harder to not bother him. i moved out recently, so that was the solution to that.

that sucks, and i completely understand what you mean :/

Thanks for the support -- and I'm sorry that you had a housemate who made you feel that way. Sometimes distancing yourself is the best solution, and I'm glad it worked out for you!

 

[AO1501]

I'm glad that you were able to get a diagnosis and understand yourself more -- it's really interesting to me to learn about the experiences of those who were diagnosed later in life. It sounds like both my parents are likely on the spectrum as well, just not able to admit it yet, but at least knowing this possibility does help with understanding them better like you said.

Part of the problem with the older generation is that there simply was no talk about autism in their experience. Autistic people were often spirited away in those days to spend their lives in institutions, usually never to be heard of again. There was also no diagnostic information, and nothing more than the traditional reporting of autistic person banging their head repetitively on a wall, swaying backwards and forwards, flapping their hands, or non-verbal and often explosively unpredictable in responsiveness. In other words, a real and (to them) genuine stigma.

While I am certain my mother was on the spectrum, she fought in WWII and brought up two children in post-war Britain. She would never have seen herself as autistic, whatever the behavior evidence.

We're lucky - if you can call it that - that today society is more open to a basic understanding of what autism really is rather than the stigma associated with it then, and that we are actually competent and capable people. Back then when our parents roamed the earth, it was very different!

 

[its_about_the_cones]

We have some Canadians here. I am in the USA, but Google points me to
https://autismcanada.org/If they are like our autism societies, they should have a lot of info available.
Stay away from any organization that is affiliated with Autism Speaks in the USA.
Look for organizations that treat ASD1 as a difference, not a defect (a.k.a. "neuro-diversity").
https://autlanders.blogspot.com/2019/07/autism-subtypes.html

Thank you for the references! I'll be sure to check out the one you linked. My research has told me to avoid Autism Speaks, and I completely agree with all the reasons why. Not sure how it's possible it still exists when it's so widely disputed by the autistic community. Hopefully things will get better!

I also really like the site Embrace Autism, also based in Canada -- it's what helped me really understand autism, and it's run by autistic psychologists.

 

[its_about_the_cones]

Part of the problem with the older generation is that there simply was no talk about autism in their experience. Autistic people were often spirited away in those days to spend their lives in institutions, usually never to be heard of again. There was also no diagnostic information, and nothing more than the traditional reporting of autistic person banging their head repetitively on a wall, swaying backwards and forwards, flapping their hands, or non-verbal and often explosively unpredictable in responsiveness. In other words, a real and (to them) genuine stigma.

While I am certain my mother was on the spectrum, she fought in WWII and brought up two children in post-war Britain. She would never have seen herself as autistic, whatever the behavior evidence.

We're lucky - if you can call it that - that today society is more open to a basic understanding of what autism really is rather than the stigma associated with it then, and that we are actually competent and capable people. Back then when our parents roamed the earth, it was very different!

That's very true. It's interesting to see the progression of understanding around autism, but you're absolutely right that this is a fairly recent development in understanding, so it's important to understand the older generation's point of view on the matter.

 

[its_about_the_cones]

Welcome! Love the username.

Thank you! "Parks and Rec" is my current comfort show, and Ben is my favourite character.

 

[Bolletje]

Thank you! "Parks and Rec" is my current comfort show, and Ben is my favourite character.

It’s one of my comfort shows too! I love Ben.

 

[EMorgan]

Hi everyone,

I'm new here, so forgive me if I don't know exactly how this works. I just feel that I need to be heard about something. I was diagnosed with ADHD late last year, and I'm still figuring that out. For the past few months, however, I've begun to suspect I also have autism. I've been masking pretty heavily my whole life, though, so it's been a slow process to figure all of this out. I've done a lot of research on this and so far everything matches with my experiences, so I'm fairly certain. I have a tab open to book an appointment for an assessment, but it costs a lot of money so I haven't done it yet.

I want to post about the traits that I relate to and get some advice on diagnosis, but right now I have something else I want to get some help on. It's about my family and the way they react to any possibility that I could be autistic.

For the past four years, I've been trying to figure out my brain. I was diagnosed with depression, but that didn't quite fit, so I kept pushing and researching, and when I started learning about ADHD, I finally felt close to understanding myself. My mom was not supportive of my diagnosis, and it's been really hard because I depend on her a lot. I got the ADHD diagnosis on my own, paid for it myself despite being unemployed at the time, and though she knew about it and sort of "let me" go through with it, she always seemed to think that there wasn't a point to getting a diagnosis -- she would always say that there's no reason to "label myself". Even now, because I'm a little more open about my condition and how it affects me, she doesn't say anything specific, but she never asks any questions or listens with any empathy. Whenever I mention ADHD, she kind of shuts down and then finds a way to change the subject, or tell me that "everyone feels that way sometimes".

The autism is a bit more tricky, because I know for a fact that she has an idea of what autism is like, and it doesn't look like me. My brother-in-law has the most stereotypical autistic traits, and that seems to be the only way she sees autism. She also can be quite rude when she talks about him, so it's hard to feel comfortable opening up about having the same disorder. Lately, because I've been wanting to get an official diagnosis, I've been trying to break the ice a bit and let her know what I'm struggling with, but it's been hard, and she's been really dismissive. I also find that since I've realized that I probably have autism, I'm finding it harder to mask and my authentic self is coming out. This feels good to me, but I know that she thinks it's weird and that I'm not trying hard enough to be normal anymore. Maybe I'm not -- I don't know what I'm supposed to do.

I told her about how I felt during some social events we had this weekend, describing how the fact that it was loud caused me to have a meltdown later, and that I felt very uncomfortable trying to follow group conversations. She just sort of watched me, with a flat expression, and I felt really awkward, like maybe I was offending her, but I didn't see how. Then as soon as there was a pause, she jumped in and said "what makes you think everyone there didn't feel the same?" I sort of went quiet for a second, not sure how to respond to that. Because that wasn't the point I was making -- for one thing, I know for a fact that not everyone has a meltdown when there are too many sounds, and for another, I really don't care what everyone else is feeling at the moment, because I'm just trying to explain how I feel. Then she just said go on, so I just mumbled something about needing a day or two after events like that to recharge, and that I was learning to accept that or something. She didn't really say anything, just stared off into the distance for a while, and then completely changed the subject.

Am I just not understanding some social cue here? Or was that rude? What was I supposed to do in that situation? I wanted her to understand why I was so weird at the social event, because she always seems to think I'm mad at someone when really, I'm just experiencing a lot of feelings and don't know how to regulate them. But now I feel like I offended her somehow, and I don't know how to fix it. And I'm frustrated because if that's how she reacts to even the tiniest indication that I might be different, how will she react when I want to pursue a diagnosis? Do I just never tell her?

I'm sorry this is so long, and I'm sorry if it's not clear. I don't know what to do or feel. I just needed to feel heard, and I'm hoping that someone on here might understand.

Thank you in advance for reading.

You could be telling my story! ALthough, I don'thave any official diagnoses I am so, so sure I am autistic and have ADHD. Despite my young niece being autistic and my family being accepting of this and makes accommodations for her, my husband clearly is autistic too and my family treat him very rudely, like he should know how to behave and my mum in particular talks about him very negatively. My husband and I both missed the signs that our kids are also autistic, mainly because we thought that their behaviours were perfectly typical. We fly the flag of being quirky in our house. It was during the lockdowns, when I was no longer around my parents or other people that my ability or need to mask started to fall away and I simply can't and won't put it back. Once you know, you know! Once your eyes are opened they can't be closed again, right? I keep thinking about pushing that button in getting an official diagnosis because I am too afraid of my mum's reaction. Ridiculous at 43, but there you go. I am sorry I don't have any answers on how to tackle it but thought maybe if I shared that I am in a similar boat it might make you feel less alone as your story made me feel less alone too. I have 0 friendships outside of my husband and family IRL and no one to share with.

 

[its_about_the_cones]

You could be telling my story! ALthough, I don'thave any official diagnoses I am so, so sure I am autistic and have ADHD. Despite my young niece being autistic and my family being accepting of this and makes accommodations for her, my husband clearly is autistic too and my family treat him very rudely, like he should know how to behave and my mum in particular talks about him very negatively. My husband and I both missed the signs that our kids are also autistic, mainly because we thought that their behaviours were perfectly typical. We fly the flag of being quirky in our house. It was during the lockdowns, when I was no longer around my parents or other people that my ability or need to mask started to fall away and I simply can't and won't put it back. Once you know, you know! Once your eyes are opened they can't be closed again, right? I keep thinking about pushing that button in getting an official diagnosis because I am too afraid of my mum's reaction. Ridiculous at 43, but there you go. I am sorry I don't have any answers on how to tackle it but thought maybe if I shared that I am in a similar boat it might make you feel less alone as your story made me feel less alone too. I have 0 friendships outside of my husband and family IRL and no one to share with.

Thank you for sharing your experience -- it does help me feel less alone! It's nice to know that others resonate with my experiences.

It's hard, especially without the support of family, but I'm trying to just keep learning about it and to not mask as much -- I've been openly stimming in front of my parents quite a lot recently (without even really noticing!), and though they comment on it sometimes, they mostly just ignore it, so I'm taking that as a partial win -- at least I'm feeling better now that I can do it more! I hadn't realized it was such an important thing for me.

I'm sorry that you don't have support from your family, but I'm glad that my experience made you feel less alone. I hope things get better for the both of us!