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Roller coaster

Alien0n3arth

I'm sorry fir sharing this. It's gonna be short. I have a roller coaster, I have my appointment dates for assessment, and once I feel happy about it, then anxious, then I feel that I regret that I have them, and feel like going to cancel it, but then I'm afraid of doing something I would regret later. I'm also afraid of getting autism diagnosis,  I'm afraid I will regret having it. Then I'm afraid of being told I'm not autistic or being totally dismissed. Recently I saw a video of Uta Frith complaining about autism misdiagnosis and overdiagnosis. But then I concluded, that she should tale the responsibility and not complain about people getting the diagnosis and I also added that it's interesting that she is upset about people being misdiagnosed with autism (yes a false negative diagnosis is possible) but she seems to be oblivious to the fact that there are a lot of people misdiagnosed with other conditions. Nobody is upset about misdiagnosis in depression or bipolar, tourette etc. Many people, especially adults who get the late autism diagnosis were diagnosed/misdiagnosed with other conditions earlier. 

So I have a lot of anxiety because I have no idea how it feels to have this diagnosis, I don't know how I will feel, if it helps me or not, I don't know what will happen next. Is there anyone who went through this?

Parents

  • Your roller coaster thoughts about diagnosis are common. I experienced a lot of “should I/shouldn’t I” thoughts and “what ifs” as I approached my diagnosis, although I did eventually make peace with my decision to go ahead.

    I saw last week’s New Scientist article by Uta Frith which may be of similar content to the video you saw. I don’t agree with much of what she says but I do think it has been obvious for years that there would be a variation between autistic people with high support needs and autistic people with low support needs, many of whom would have received a diagnosis of Asperger’s under the old system. At the same time, because the different support needs aren’t on a linear scale, autism profiles are limited, so I’m not sure how that can be resolved, but it certainly shouldn’t be resolved by dismissal of the needs of those who struggle ‘just a little’, keeping in mind that their masking would be disregarded.

    Frith’s dismissal of masking is hard to take, given the abundance of evidence that testifies to its cost to autistic people. Many autism experts disagree with her on this. Thank goodness Frith doesn’t have the last word.

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  • Your roller coaster thoughts about diagnosis are common. I experienced a lot of “should I/shouldn’t I” thoughts and “what ifs” as I approached my diagnosis, although I did eventually make peace with my decision to go ahead.

    I saw last week’s New Scientist article by Uta Frith which may be of similar content to the video you saw. I don’t agree with much of what she says but I do think it has been obvious for years that there would be a variation between autistic people with high support needs and autistic people with low support needs, many of whom would have received a diagnosis of Asperger’s under the old system. At the same time, because the different support needs aren’t on a linear scale, autism profiles are limited, so I’m not sure how that can be resolved, but it certainly shouldn’t be resolved by dismissal of the needs of those who struggle ‘just a little’, keeping in mind that their masking would be disregarded.

    Frith’s dismissal of masking is hard to take, given the abundance of evidence that testifies to its cost to autistic people. Many autism experts disagree with her on this. Thank goodness Frith doesn’t have the last word.

Children
  • in reply to ArchaeC

    I only read part of this review, but seems serious work, I may follow some of the authors.

    https://link.springer.com/article/10.1007/s11065-023-09630-2

    (Related to some of Uta Friths claims)

  • in reply to ArchaeC

    For me it's not masking the most exhausting thing. I'm not good at masking and I'm generally myself, especially if stressed or tired or overwhelmed. Then all my learned skills go away. The everyday life is too much for me. Once I may seem fine, few hours later I struggle to answer a simple question, that causes me a traffic jam in my brain. Usually it makes others laugh. It's like old machine with rotting gears struggling to move, so it takes me a minute or two to receive the question "are you hungry?" Then I have to check if I'm hungry. I visualise it like asking my stomach: "hey, are you hungry?". Then I decide and give the answer. But sometimes this question is kind of reminder to me, that I am actually hungry but didn't realise it till someone asked. My family members find it funny and I'm their entertainment. It makes me little sad, that nobody takes me seriously. Plus if there is longer chat going on around me, I feel my brain shaking and as I coping mechanism (probably) pace out. Pick one thought from my shelf and replay it chain and again.

    So sometimes I may seem fine, other time it's visible that im not fine. People aldo find my wide stary eyes funny- also when tired.