What caused you to seek a diagnosis?
Now, whilst showing certain symptoms is one thing...which isn't too uncommon in the general population, since it's not just about those symptoms but also the severity and how they affect you. I have to wonder, for those of you who went through the diagnosis process predominately by yourself, was there a particular moment where it clicked and you thought "Perhaps I should get assessed"?
Did your friends and/or family suggest a diagnosis? If not, was there any other source which made you consider the possibility such as the internet or a TV show? Also, is there anyone here who went through an assessment and it turned out that they weren't autistic? Or perhaps you went to seek a different diagnosis, only to end up with one for autism?
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SilentJessica
Velociraptor
Joined: 15 Aug 2016
Age: 32
Gender: Female
Posts: 405
Location: Melbourne, Australia
The reasons I want to be assessed are:
☆ It would be an interesting thing to know about myself. I think everyone should know if they have some sort of difference because it’s a part of yourself and helps make you who you are.
☆ It could make me feel less “weird” and help me see that I have had reasons for being the way I am. It would make certain things make sense and help me to understand myself.
☆ If I ever need help with anything, it might be easier to get.
I’ve wondered about it since I was 14 and was told by two people on a forum I used to post on a lot that I should be tested. Before then, I thought only boys could have it, but then I read about the traits and noticed a lot of them sounded like me. Since then, it has been something I’ve been very interested in and have read a lot about. My niece and nephew both have a lot of traits as well, and will be getting assessments in the next few months.
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Your neurodiverse (Aspie) score: 152 of 200
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I always thought I was mentally ill and that was my lot in life , I was never given a diagnosis just anxiety & depression and I just accepted it and try to battle through it.
My GF watched a TV programme on autism about 3 years ago and she saw something , she made me watch it and said that is you. That started me on a internet search frenzy , joining here and then my GF saying I should get assessed ( If I hadn't been suffering she wouldn't of suggested it ). My psychiatrist said there is no point as he said I didn't have it. He also tried to prescribe me anti psychotics to help me sleep. If it had just been me I would of just accepted this but my GF ( who did a lot of research as well ) read him the riot act about anti psychotics and insisted he make a referral for me. She even said ' are you even a psychiatrist ?' ( I wanted the ground to swallow me at this point ) , he admitted he was only a Grade 2 doctor , I love my GF but she's scary af when someone pisses her off They have refused to see me now
I think the light bulb moment for me was reading posts here and sharing them with my GF , I have terrible self awareness so not everything made sense till I sounded it out with her , I always thought I was alone in my suffering and it was unique , I now know I am not special
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Having reached menopause, I was finding I didn't have the energy to mask any more. I'm finding it harder and harder to make my invisible container around myself. I'm currently waiting for my report, and I don't hold out hopes for a definitive diagnosis as I'm an older woman. Sure the doctor said I had traits, but not enough. Like I'm not supposed to be able to stand being at a party. Hah! Any way he did talk about giving me reading matter to help. I'll wait an see before I come to any conclusion.
My GF watched a TV programme on autism about 3 years ago and she saw something , she made me watch it and said that is you. That started me on a internet search frenzy , joining here and then my GF saying I should get assessed ( If I hadn't been suffering she wouldn't of suggested it ). My psychiatrist said there is no point as he said I didn't have it. He also tried to prescribe me anti psychotics to help me sleep. If it had just been me I would of just accepted this but my GF ( who did a lot of research as well ) read him the riot act about anti psychotics and insisted he make a referral for me. She even said ' are you even a psychiatrist ?' ( I wanted the ground to swallow me at this point ) , he admitted he was only a Grade 2 doctor , I love my GF but she's scary af when someone pisses her off They have refused to see me now
I think the light bulb moment for me was reading posts here and sharing them with my GF , I have terrible self awareness so not everything made sense till I sounded it out with her , I always thought I was alone in my suffering and it was unique , I now know I am not special
Bless your soul, man! I'm glad your girlfriend was there for you. I guess you earned that in karma.
Interesting question.
I don’t think it was one thing that made me decide to pursue diagnosis, but a long sequence of events.
I have always had an interest in tv programmes which I came across about autism (admittedly few of them years ago, but there was something that drew me in to them and made me want to watch alone). I think I identified with the energy of the subjects though I didn’t clearly acknowledge that at the time.
Then, my daughter was born almost 11 years ago and from the start I felt she seemed separate from the other children and perhaps when she was five or so I looked online for a list of indicators for autism. I found the CAST online, but felt she didn’t tick enough boxes to warrant further investigation. I forgot about it for a while then a few years later looked it up again and came across the AQ. I was quite surprised that I scored so highly. This began me reading all I came across in the internet and other sources to try and see if there was a chance I was autistic.
It took a few years for me to get the courage up to actually approach my GP for a referral. In that time my son was also identified as being potentially on the spectrum and my daughter has now also been put on the ASD pathway.
It is a waiting game for us all, my son’s next appointment is next month, my daughter’s next week and my assessment will not be for another 6 months.
My GP said he thought I probably was ASD but he wasn’t sure whether having got this far in life whether at assessment would find I wasn’t severe enough for positive diagnosis.
In the end the reasons I want to be diagnosed I suppose are for personal knowledge and how to best make use of the rest of my life in a realistic way; to aid better understanding of my kids; to potentially access reasonable adjustments at work (should I ever manage to get a job where this potential might exist!)
Also I have always felt that the reasons for my struggles were somehow caused by me just not trying hard enough and this has been reflected back by my experience of CBT and society generally. With hindsight though it would be unfair to say I haven’t tried. If anything I’ve tried TOO hard my whole life.
I note more examples of my traits and behaviours all the time that seem to me to be synonymous with an ASD diagnosis, though of course I cannot be totally impartial about myself, even if I try to aspire to that. I’m not sure what I will do with a negative assessment, though I must allow that it’s a possibility whatever my own beliefs. Also a ‘we’re not sure diagnosis’ which is also possible could be equally difficult. I’m not a fan of ambiguity at the best of times, and I don’t know where I could go from there.
I was having daily meltdowns, and struggling significantly in many areas. My mom took a business psychology class and learned about autism.
It fit my description really well so she set up a diagnostic appointment for me, and I was diagnosed with autism and a few other things.
I would of been diagnosed earlier but during young childhood most of the kids around where we lived were either autistic or ADHD.
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Diagnosed autistic level 2, ODD, anxiety, dyspraxic, essential tremors, depression (Doubted), CAPD, hyper mobility syndrome
Suspected; PTSD (Treated, as my counselor did notice), possible PCOS, PMDD, Learning disabilities (Sure of it, unknown what they are), possibly something wrong with immune system (Sick about as much as I'm not) Possible EDS- hyper mobility type (Will be getting tested, suggested by doctor) dysautonomia
I was impaired, but I had no idea why. And because I had so much trouble putting my difficulties into words, I didn't feel like I could go to a doctor for help or I would just be misunderstood. At the time, I couldn't even explain things to my family without confusing them, so I spent years trying to figure things out for myself.
I started questioning the possibility of autism specifically because it was a long-running family joke and because I gained more experience with the autistic community itself. I'd previously thought that, while I certainly had traits, they weren't severe enough to be clinical autism. But I found, especially in the first forum that I joined, that I was actually more inept than most Aspies. That cinched it for me, and I accepted the possibility. That first step helped me put all of my symptoms into context, helping me to understand and coherently express my issues for the first time in my life.
I never sought out an autism diagnosis, though. I didn't want to bias the doctor and risk being mislabeled if something else better fit my condition. I just went looking for help with my biggest issues, and the first doctor I saw for CBT diagnosed me with ASD based on my difficulties. It was confirmed through an autism assessment later. I wanted the post-diagnosis assessment done for several reasons. First, I wanted to better understand what my biggest issues were (and it definitely helped in that regard). I also wanted better documentation because my family was unwilling to accept the initial diagnosis, and I needed their support. Not least of all, I wanted to be 100% certain that I was on the right track. I didn't want to waste time if I was actually suffering from something more treatable, like GAD or something along those lines. Also, I was curious about potential comorbid conditions. I was supposed to have neuropsychological testing done when I was eight because a specialist suspected ADHD, but my mom refused to allow it.
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I was tired of being misdiagnosed(schizoid, schizoaffective, "its just OCD", "it's just social anxiety") and tired from the lack of understanding from my parents and my healthcare team. My father was abusive for decades as he had expectations of me of a fully functional neurotypical which I could never meet. After my diagnosis he finally understood why I am the way I am and legitimizes what I go through. Our relationship is much better now. I also sought out a diagnosis for self-validation and understanding for why my life turned out the way it did, why I always felt so different from those around me. A diagnosis has value beyond just treatment.
ASPartOfMe
Veteran
Joined: 25 Aug 2013
Age: 67
Gender: Male
Posts: 35,907
Location: Long Island, New York
It was my siblings who suggested it.
I agreed because I was in what I now understand to be autistic burnout and I had not the foggiest idea of how to move forward and felt who was I at this point in my life to object.
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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity
“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman
I got diagnosed with agoraphobia in my early 20s but I knew it wasn't that, I'd seen a couple of things relating to autism on TV around that time, I remember Oliver Sachs presented one of them, but I didn't believe I was *that* extreme and I'd also begun self-medicating which helped me, so I didn't pursue it. My ex-wife eventually persuaded me to get a diagnosis thinking I'd get help when she decided to leave me.
envirozentinel
Forum Moderator
Joined: 16 Sep 2012
Gender: Male
Posts: 17,031
Location: Keshron, Super-Zakhyria
Misdiagnosis as a ke growing up in the 1970s and none of the health professionals knew what to make of me.
In my 40s I had depression and PTSD and was going through a really rough patch. It came out during assessment and for the first time an accurate diagnosis was made by an excellent female psychiatrist at the government hospital mental health clinic.
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I heard of Asperger's around 2006 on a TV program and the guy reminded me a lot of myself, but when I read that it was supposed to be on the autism spectrum, I dismissed the idea,as what was known as autism at that time was very different from me.
About 2 years or so later I was reminded of it again (online), and both reluctantly, intrigued and anxious, I started looking into it over the fall of 2008. The more I read, the more I thought I was an aspie. It was the need to know for sure that caused me to be assessed. I needed to know.
My family only knew about it after I had started the process and before I was in for my assessment. None of them kne anything about AS. I was very anxious due to former bad experience and anxious about being dismissed for being adult
and female, and anxious about receiving a wrong diagnosis.
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Dear_one
Veteran
Joined: 2 Feb 2008
Age: 76
Gender: Male
Posts: 5,721
Location: Where the Great Plains meet the Northern Pines
I first realized that my Theory of Mind was woefully incomplete when a roommate got extremely angry at me, triggered by a trifle. I went to self-help groups, mostly Adult Children Anon. for many years, without hearing about AS. For them, it is all nurture, no nature. Eventually, when mother was dying, I was trying to help my sister come to terms with her coldness, and a renewed search hit upon the list of symptoms that fit us both.
Mother had discouraged me from getting a DX because for most of our lives, the only possibilities were dangerous misdiagnoses.
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