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coping with researching

MerCsDs

eating.words
It’s very weird to me how much I’ve been researching to understand autism.

I only started suspecting I was dealing with autism in late 2022. In 2023 I was misdiagnosed as only have sensory difficulties but without having ASD which I internalized ‘as is’ until last year when I was chatting with a ‘now’ online friend who also has autism and she just validated me by saying something like ‘no honey/babe you definitely have it’ then it just clicked.
Before that moment, I was unable to fully wrap my head around not having it but I would repeat what the psychiatrist said to me, a lot and to other people too in certain circumstances “You can have traits of a something without having the disorder” which I justified a lot of things with.
I was so demoralized but didn’t have any other answer besides that but they’re the ones with the answers so only they have them…

Nonetheless, I researched it way more than I’m conscious of even now. In 2022, I looked at a few sources listing symptoms. I made my first list of how I could remember each symptoms to manifest and have manifested since I was a kid. Yet, I was doubtful, scared and unable to fully communicate all of them since each professional doubted me even more than myself or denied it, so I forgot things and couldn’t speak my mind fully.

More recently, I started pushing for it again with my personal doctor and professionals from the BPD program. It’s so awful. Since I continued to search about it: I got into this mom who reversed engineered genetics involved with autism to better understand her daughter with autism, I got into online communities more, I realized that I gravitate towards other people with neurodivergent and have had convos about it with close friends, I realized that many of my siblings have undiagnosed ASD or ADHD, I realized that a lot of my environment and genetic mental health predispositions informed me struggling with mental illness more than my other family members have, etc. yet it doesn’t feel enough then and even now.
It’s awful how much it feels like that won’t end, I mean I still don’t have a formal diagnosis for AuDHD or most of my disorders although I’ve spent hours thinking, observing and searching to evaluate whether I have them or not, how people function when they have it versus how neurotypical or people who don’t have it function but each time I mention it, assert it or have to identify what I have, there’s the doubt and result of invalidation where I’m hesitant to even think of myself as this or that bc of how important the formal diagnosis is important, how important it is to be right and see how important things must be for you to have the important information and important decisions, I don’t feel important and now the diagnosis that I don’t have, weights more on professionals than the chronic struggle I face having to deal with it on my own. I absolutely hate having to explain any of my situation to a new professional because I don’t have the energy to refute my importance over their perception nor having to explain why I have something that I have, like I just do. And it’s even worse to be treated as not having it while drowning with it than having it “formally” and not being treated for it could ever be. But even then, I’m not that important since it wasn’t me who gave my own disability to myself, it’s the 2729282th professional who got to finally say what’s “wrong with me” after I have been continually searching for an appointment anywhere.
I think it’s one thing to not have support while you have lower support needs but when people who are paid and studied to supposedly support you with evaluations are blind to you and only see things with themselves, it’s alike demonizing your struggle or complains. Why is it so hard for me!
 
It was a very different situation for me, I was already in my 50s when I heard about autism on a radio talk show and all of a sudden everything fell in to place and I finally understood how I ended up living a semi feral lifestyle in a remote tropical rainforest. It was a revelation and a half and I was so pleased to finally have answers that fitted.

It wasn't without trauma though, I spent months reassessing more than 50 years of life and memories.

After that I walked out of the jungle, caught a plane down to Adelaide and got a diagnosis. That's a lot easier here than what people in other countries have to go through though. I simply walked in to a diagnostic centre and told them that I wanted a diagnosis. I don't do phones, I always show up in person.

A couple of really nice ladies talked to me for about 15 minutes, then they both agreed that I was probably autistic and put my name on the waiting list. There was a 12 month wait for that but all it cost me was $500, apparently diagnosis is government subsidised here.
 
It was a very different situation for me, I was already in my 50s when I heard about autism on a radio talk show and all of a sudden everything fell in to place and I finally understood how I ended up living a semi feral lifestyle in a remote tropical rainforest. It was a revelation and a half and I was so pleased to finally have answers that fitted.

It wasn't without trauma though, I spent months reassessing more than 50 years of life and memories.

After that I walked out of the jungle, caught a plane down to Adelaide and got a diagnosis. That's a lot easier here than what people in other countries have to go through though. I simply walked in to a diagnostic centre and told them that I wanted a diagnosis. I don't do phones, I always show up in person.

A couple of really nice ladies talked to me for about 15 minutes, then they both agreed that I was probably autistic and put my name on the waiting list. There was a 12 month wait for that but all it cost me was $500, apparently diagnosis is government subsidised here.

That’s incredible that it was that simple for you.
Also you just walked out the juggle and got a diagnosis XD that’s unbelievable, you seem to be living a life I didn’t know was possible. I can’t imagine having to think about 50 years of one’s life, getting a late diagnosis is one of the things I fear since I’ve heard that a lot of people end up only knowing later in life.
Although, it was after decades of ups and downs, has your diagnosis improved your years since then? Did you feel like something was amiss before it?
 
Although, it was after decades of ups and downs, has your diagnosis improved your years since then? Did you feel like something was amiss before it?
I was always a bit weird and I knew I wasn't normal ever since I was little, and all things considered I think I looked after myself fairly well. Maybe I could have done something different if I'd known beforehand about how burnout works but as it is I'm pretty happy with how my life turned out. I got to see and do a lot of things most people could only ever dream of and I've had a really phat time for the most part.

I didn't know anything about autism but I did learn to know myself fairly well, learning about autism just gave me more thorough explanations and a sense of validation and vindication. Well, it gave me something else pretty important too. My diagnosis got me a full disability pension and I never have to work again.

As for the knowledge improving my life - no, not really. I had already figured out a lot of things for myself the hard way, but it was also very comforting to find out that there are lots of others just like me and that I am in fact "normal".

When I first came across this forum it was more out of curiosity than any need for help and when I signed up it was with the idea of helping others rather than looking for answers for myself.
 
Just thought I should add, I've really enjoyed learning more about autism, I've attended symposiums and conferences and talked to thousands of different people and I've become involved with a few research projects as well.

Autism is taken pretty seriously in Australia, and my state of South Australia is the leader of the pack when it comes to all things autistic. We even have a government department called The Office For Autism with a dedicated minister to oversee it.

Office for Autism
 
Just thought I should add, I've really enjoyed learning more about autism, I've attended symposiums and conferences and talked to thousands of different people and I've become involved with a few research projects as well.

Autism is taken pretty seriously in Australia, and my state of South Australia is the leader of the pack when it comes to all things autistic. We even have a government department called The Office For Autism with a dedicated minister to oversee it.

Office for Autism

Thank you for the addition and I’m glad I’m not the only one somehow attached to the research of autism. Even if in different situations.
 
It’s very weird to me how much I’ve been researching to understand autism.

I only started suspecting I was dealing with autism in late 2022. In 2023 I was misdiagnosed as only have sensory difficulties but without having ASD which I internalized ‘as is’ until last year when I was chatting with a ‘now’ online friend who also has autism and she just validated me by saying something like ‘no honey/babe you definitely have it’ then it just clicked.
Before that moment, I was unable to fully wrap my head around not having it but I would repeat what the psychiatrist said to me, a lot and to other people too in certain circumstances “You can have traits of a something without having the disorder” which I justified a lot of things with.
I was so demoralized but didn’t have any other answer besides that but they’re the ones with the answers so only they have them…

Nonetheless, I researched it way more than I’m conscious of even now. In 2022, I looked at a few sources listing symptoms. I made my first list of how I could remember each symptoms to manifest and have manifested since I was a kid. Yet, I was doubtful, scared and unable to fully communicate all of them since each professional doubted me even more than myself or denied it, so I forgot things and couldn’t speak my mind fully.

More recently, I started pushing for it again with my personal doctor and professionals from the BPD program. It’s so awful. Since I continued to search about it: I got into this mom who reversed engineered genetics involved with autism to better understand her daughter with autism, I got into online communities more, I realized that I gravitate towards other people with neurodivergent and have had convos about it with close friends, I realized that many of my siblings have undiagnosed ASD or ADHD, I realized that a lot of my environment and genetic mental health predispositions informed me struggling with mental illness more than my other family members have, etc. yet it doesn’t feel enough then and even now.
It’s awful how much it feels like that won’t end, I mean I still don’t have a formal diagnosis for AuDHD or most of my disorders although I’ve spent hours thinking, observing and searching to evaluate whether I have them or not, how people function when they have it versus how neurotypical or people who don’t have it function but each time I mention it, assert it or have to identify what I have, there’s the doubt and result of invalidation where I’m hesitant to even think of myself as this or that bc of how important the formal diagnosis is important, how important it is to be right and see how important things must be for you to have the important information and important decisions, I don’t feel important and now the diagnosis that I don’t have, weights more on professionals than the chronic struggle I face having to deal with it on my own. I absolutely hate having to explain any of my situation to a new professional because I don’t have the energy to refute my importance over their perception nor having to explain why I have something that I have, like I just do. And it’s even worse to be treated as not having it while drowning with it than having it “formally” and not being treated for it could ever be. But even then, I’m not that important since it wasn’t me who gave my own disability to myself, it’s the 2729282th professional who got to finally say what’s “wrong with me” after I have been continually searching for an appointment anywhere.
I think it’s one thing to not have support while you have lower support needs but when people who are paid and studied to supposedly support you with evaluations are blind to you and only see things with themselves, it’s alike demonizing your struggle or complains. Why is it so hard for me!
What was helpful to me was to make up a Word file of all my persistent symptoms, thoughts, brief descriptions of experiences. After about 3 months of going back to it, filling in a few more things at a time, I had over 170 itemized entries! Yeah...nuts! It was my "You might be autistic if..." list. However, it was helpful because I was able to put into words on paper what I couldn't verbalize effectively. I made a copy for the psychologist and one for myself, so when the questions started to be asked during my interview, we both could refer to it.

Of course, I spent another 90 minutes in a performance lab with 2 other people running me through all manner of intellectual tests...one leading...another timing my responses and observing my body language. Then another 90 minutes or so of written testing. Then another hour or so with the psychologist who interviewed and ran me through some other testing. Fairly comprehensive and worth the while...and money.

I went through that phase of knowing something was off, but not completely sure what it was. Adult autism presents differently than childhood autism...and the majority of research literature is based upon children, not adults. So, you actually need to seek out an adult autism specialist to get the proper perspective and context. Then narrow your literature searches to adult autism. A good chunk of the pediatric studies do not translate to adults and vice-versa.
 
What was helpful to me was to make up a Word file of all my persistent symptoms, thoughts, brief descriptions of experiences. After about 3 months of going back to it, filling in a few more things at a time, I had over 170 itemized entries! Yeah...nuts! It was my "You might be autistic if..." list. However, it was helpful because I was able to put into words on paper what I couldn't verbalize effectively. I made a copy for the psychologist and one for myself, so when the questions started to be asked during my interview, we both could refer to it.

Of course, I spent another 90 minutes in a performance lab with 2 other people running me through all manner of intellectual tests...one leading...another timing my responses and observing my body language. Then another 90 minutes or so of written testing. Then another hour or so with the psychologist who interviewed and ran me through some other testing. Fairly comprehensive and worth the while...and money.

I went through that phase of knowing something was off, but not completely sure what it was. Adult autism presents differently than childhood autism...and the majority of research literature is based upon children, not adults. So, you actually need to seek out an adult autism specialist to get the proper perspective and context. Then narrow your literature searches to adult autism. A good chunk of the pediatric studies do not translate to adults and vice-versa.

I forgot to reply but I started doing that over a month ago or so, and not only for ASD, also for ADHD and other struggles I have. It's weird because I started this process of psychoanalyzing myself, my attachments and my solutions as to find the pattern that a person who has the disorder has and it made me inherently more confident in myself because I am grateful that I am able to function at all with all this chaos that fuels me. Nevertheless, I actually never shared any of my list with a professional since I never saw the use of it since past interactions left me with no real trust for their possible insight or reaction to my list. Plus, like someone telling me they think I have autism while I know I have autism is so redundant.
Funny enough now I realized that I was 17 when I got my misdiagnosis so I got my evaluation done under pediatric criterias of autism which explains why what the psychiatrist cited in the report made no sense to me. My family doctor gave me a copy of the report not that long ago and I was so mad at how incomplete it was on top of their being obvious holes in their thinking.
 
I forgot to reply but I started doing that over a month ago or so, and not only for ASD, also for ADHD and other struggles I have. It's weird because I started this process of psychoanalyzing myself, my attachments and my solutions as to find the pattern that a person who has the disorder has and it made me inherently more confident in myself because I am grateful that I am able to function at all with all this chaos that fuels me. Nevertheless, I actually never shared any of my list with a professional since I never saw the use of it since past interactions left me with no real trust for their possible insight or reaction to my list. Plus, like someone telling me they think I have autism while I know I have autism is so redundant.
Funny enough now I realized that I was 17 when I got my misdiagnosis so I got my evaluation done under pediatric criterias of autism which explains why what the psychiatrist cited in the report made no sense to me. My family doctor gave me a copy of the report not that long ago and I was so mad at how incomplete it was on top of their being obvious holes in their thinking.
My list that I gave my psychologist was useful...and my psychologist told me as much on our second appointment. She commented that nobody had ever done this for her and was useful for her when later reviewing my case...giving her some further insight into my world.

Realistically, we never had the time to really dive into the 170 or so itemized things on my list during my appointment, but she did later on.

In my area there are several pediatric autism centers, but I ended up at a local mental health hospital campus where there was several outpatient offices...one of which had a psychologist that dealt primarily with adult autism diagnosis and therapy. I am in the US. I see you are from Canada. You may be able to find a university-based autism research center that may cater to or at least have specialists in adult ASD and ADHD...such as the Autism and Special Education Research Team (ASERT) at the University of Calgary in Alberta, Canada, provides clinical assessment for autism to adults. Furthermore, the Adult Neurodevelopmental Services (ANS) at the Centre for Addiction and Mental Health (CAMH) in Ontario provides assessment and treatment for adults diagnosed with autism. Additionally, Dr. Natalie Engelbrecht, a naturopathic doctor and registered psychotherapist, specializes in adult autism assessments.
 

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