I don't care what people say about...
I don't care what anyone says, it absolutely sucks getting a diagnosis of Asperger's in childhood.
While most newly diagnosed or undiagnosed adults would say "you're lucky you received a diagnosis so early" or "at least you knew what was wrong with you from a young age", being diagnosed as an 8-year-old has it's bad points depending on your circumstances.
As adults, people getting a diagnosis are more in control of the process and who they want to disclose it to and who they don't. Adults are also more mature at handling it, and will feel relief that they now have an answer. They even sometimes feel like they're a new person and can start over now with a diagnosis to help them. A lot of adults are proud and open about their diagnosis, but if they choose to be closeted then that's up to the individual.
Some children who receive a diagnosis (over the age of 6) may not be able to handle it so well. When I was diagnosed at 8, I developed anger and hatred of myself and I felt like I was better off not knowing. Before I got the diagnosis I still received appropriate support at school which I was happy with. But getting the diagnosis meant I had a long road of assessments, therapy, and other appointments to 'fix' me, and I found it all stressful, being so I had no control over anything because I was just a child. It made me feel broken, and more different from my peers than how I felt before knowing about the diagnosis. Also I felt isolated because no other kid in my class had to deal with a disability like that, and so they just got on taking their NT abilities for granted with their friends. But me, I had to deal with a lot.
Lastly I had no control over who my diagnosis was disclosed to. Even my younger cousins knew, and they were only little back then (one of them brought up the A-word randomly to me, which kind of alarmed me coming from a 5 or 6-year-old NT). My diagnosis also got blabbed to the whole class, so after that I was just treated as the "special needs" kid or "the kid with something wrong with her".
And I saw my label as some sort of disease, and going to mainstream school and having NT family around me actually made me believe that I was the only person in the whole world with Asperger's.
Can anyone relate?
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Female
Last edited by Joe90 on 27 Feb 2020, 6:35 pm, edited 1 time in total.
I know your early diagnosis has presented a considerable trauma for you. Have you ever gone for counselling to accept your autism or the impact of your diagnosis on your self-esteem?
Maybe if your mother or your boyfriend went with you for therapy, you would feel more supported.
I'm sorry it was so hard for you.
Hugs
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I don't think I was mature enough age 18 or even age 28 never mind age 8 to handle it if they gave Autism diagnosis for where I am on the spectrum back then.
Tough decision for parents because if I was given a diagnosis and my parents did not tell me I would have resented that a lot.
It was very wrong of your parents to tell everybody. This desire in this era to tell everybody every personal thing is confusing to me.
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“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'm honestly not sure if I would have benefitted from knowing early. The fact remains that I knew something was "off" about me compared to other kids and if I had to known it was something beyond my control I wouldn't have hated myself so much growing up. As I see it, better to be called autistic than to be called lazy, spoiled, a-hole, etc. How many times did I cry out "what's wrong with me?" as a child since I couldn't seem to relate to other children.
One example of where it would definitely benefitted was when I was diagnosed with a rare condition that makes it hard to swallow food. I wouldn't have been called an attention seeker, spoiled, bratty, difficult etc if people really understood what was happening to me and why I needed special food arrangements.
Having a physical diagnosis is easier for a child to take in (unless it's life-threatening), and more people understand physical health. Mental diagnosises are harder because of the stigma and the way society doesn't understand or accept who you are. I had sinus and ear trouble and had to have regular appointments and check-ups but I wasn't one bit ashamed or embarrassed about it. In fact I told everyone, and I understood it more than I understood my own brain wiring.
My mum says she's sorry about telling everyone about my Asperger's but she said that at the time she thought it was for the best. I can understand, as when you're a parent with a newly diagnosed child I suppose you don't always know what's for the best.
She did ask the assessor if I should be told about it and he said that it's best the child does know and that it's also best the whole family and the child's classmates know. But that just made everything worse.
I felt that I was no longer seen as Joe90, instead I became the diagnosis. I hated being defined by the diagnosis.
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Female
I would of hated that, being othered in that way. As in there wouldn't be terms like odd or shy or awkward to hide behind, no questions, no doubts... just straight to permanent invalidation and scapegoating.
Did your relations treat you with more understanding after your diagnosis was made public, did they give your mum more support?
Did your relations treat you with more understanding after your diagnosis was made public, did they give your mum more support?
Most people in my family did not treat me any differently after my diagnosis (which is good), and they did offer my mum support. But I still didn't want everyone knowing, especially kids. I didn't treat my cousins inappropriately or anything, so it wouldn't have made a difference to them if they'd known about it or not. My brother often laughed at me after I got diagnosed, and sometimes he'd walk by me and sing "you've got Asperger's! You've got Asperger's!" which made me angry. Turns out HE has Asperger's though, was diagnosed at 30. All he feels is relief, but I bet if he had been lumbered with the label back when he was 8 I don't think he would have liked it.
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In my case...
Age 22+, may meet with relief against whatever possible confusions would be. I would've been more frustrated with late diagnosis, might've wished was diagnosed sooner.
Age 15-22, may cause me some trouble to be honest. Whatever I had worked out now would be delayed for few years or so, or, well, worse. Possibly pro-cure, extended self-loathing, etc. Maybe get caught up with anxiety and depression in long term basis like most aspies do. May not able to progress from where I'm now.
Age 8-14, it may not have any significant differences from where I'm at right now.
Age 1-7, however, that may take serious difference though the outcome would be unknown. Maybe I may relate, maybe not. More likely the former if I spent most of my former years remembering a label to defy/justify with/against, with no one able to relate to.
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While most newly diagnosed or undiagnosed adults would say "you're lucky you received a diagnosis so early" or "at least you knew what was wrong with you from a young age", being diagnosed as an 8-year-old has it's bad points depending on your circumstances.
I suspect that had I been diagnosed in childhood, the adults in my life would have tried to "fix" me. As it was they were hellbent on getting me to "act normal", "keep a low profile", and "fit in". But at least they weren't able to put me through ABA (aka conversion therapy for autistic people).
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I think it's hard, if not impossible, to know.
I was massively bullied and had these special school lessons and thought I was stupid and ugly, and had max one friend at the same time, before high school when things got better.
Had it been better or worse with a diagnosis? I have no idea, because I didn't have one. Could go either way I think.
But I agree telling everybody about it is not a good idea.
And getting a diagnosis during puberty is probably not good, so much other c..p going around in your head at that age.
Just my 2c.
/Mats
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I think it was just about feeling embarrassed about part of myself and feeling abnormal because of being the only kid in my street/class/family with a label. No child likes feeling like they're not "normal", and for me having a label actually made me feel less normal than the actual symptoms I had, if that makes sense.
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Female
Its an interesting thing to think about
I have often wondered how differently my life would have gone had I been diagnosed as a child
As with most children I really wanted to fit in and even when this was so difficult I kept trying. It led me to develop reasonably effective masking behaviour and a general interest in NT behaviour that ultimately led my to where I am now career wise and in life in general. Would having an early diagnosis have helped me to opt out of this either by of my own volition of as a result of being shunned by other?
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"the diagnosis meant I had a long road of assessments, therapy, and other appointments to 'fix' me, and I found it all stressful, being so I had no control over anything because I was just a child. It made me feel broken, and more different from my peers "
Thank you for writing that down Joe.
I had wondered what might have happened had the level of knowledge meant being diagnosed in childhood. When I considered it during my researches before assessment I had concluded it might have risked giving me a label to live down to. I know suspect I may have had a luck escape thanks to the much more limited knowledge about the autism spectrum in my primary school years.
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