I wish I wasn't told about my diagnosis as a young child

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Just something I've thought about, ever since a friend of my mum's 9-year-old daughter just been diagnosed with Asperger's and she doesn't know whether to tell her daughter yet or not.

I was diagnosed when I was 8 and I was told straight away. It was too much for me to take in at that age. And knowing about it didn't make me feel any better, because it actually made me feel more different to the other kids than I felt before the diagnosis. For 2 or 3 years after the diagnosis, I kept thinking about my label, and how it made me different from the other kids, and if the other kids knew or not, and it also made me feel isolated, not socially isolated, just isolated in a way I can't explain.
I felt that the teachers defined me by my diagnosis, and sometimes I felt that the diagnosis led me around and I couldn't escape it. I was just all confused by it, and I thought I was the only child in the whole world with it (because I was the only one with it in my family and the whole school).
Then I started getting angry about it, and I would hit my mum if she mentioned 'Asperger's Syndrome' out loud, and I would cry about having a label and how it made me feel abnormal. I remember saying once "things were better BEFORE I got this diagnosis!" I never wanted to talk about it and I wanted to pretend like it never existed.

There was a girl at my school with Fragile-X Syndrome, who was 2 years younger than me, and she was less sociable than me. I found myself comparing myself to her because she was the only other non-NT child in the school. She used to stand about in the playground on her own every playtime, not talking to anybody or joining in any games. I was always playing with other children.
I used to hope that if the teachers saw me socialising enough every playtime they might think that I haven't got the diagnosis then get in touch with child services which would send me back to the clinic to get me undiagnosed.

But, then again, would I still be just as emotionally troubled about it if I was NOT told about the diagnosis at a young age (when I got older that is)? I do wish though that I had of been told in my early teens, so that I could have just live my childhood life without having the burden of having a label, as in an 'ignorance is bliss' type of thing.

I can't see how it would have been any easier for you to deal with in your teens Jo.

It's a tough one really because those of us who were diagnosed as adults wish it had been picked up when we were younger and vice verca.

It is what it is I suppose and not really worth dwelling on.

Last edited by babybird on 12 Dec 2017, 3:28 pm, edited 1 time in total.

I can see how knowing you were "different" for your whole life might have made you feel ostracized. I have the opposite story though.

I, like many of us, was only recently diagnosed as an adult. I found that it finally put everything into perspective, and I wish I would have known about it sooner. I spent my school years much in the same way you described. I was bullied, I was a loner, I was awkward. The difference though, was I did not know why. I took it as a personal failing that all the other kids could do things so naturally, and I had to work so hard to match them. I failed very often. Every time, I learned what went wrong and perfected my art of being a NT.

Fast forward, I am now 38, and going through burnout, which is what lead to my diagnosis in the first place. I built up this expectation of what I could do as a NT, and now, I can no longer meet those expectations. I cant even go for groceries without having a meltdown from the people and the noises and the lights. My poor wife, who married a "normal" man, now has to contend with an autistic husband.

I am not trying to play a game of oneupmanship, your experiences are valid and traumatic, but rather point out that not knowing has tragic consequences as well. I would advise your mom's friend to tell her daughter the diagnosis, so her daughter can face the inevitable and come out prepared like you have, instead of wonder why she is so bad at being a person like I had, and then ultimately, ending up int he same place.

I have written on WP before about my opinion of the age at which someone might be told about their autism.

I believe that, generally, informing a child of, say, 12-14 years of age gives them knowledge about themselves while giving them the option of disclosing to others, or not. Most might not want to disclose right away, and that is okay. But, knowing themselves would give them the knowledge that they could disclose later when they are ready to do so.

I wish my parents would have told me when I was 9 going on 10. Just think of all the social mistakes I wouldn't have made if I was told before the age of 10.

I wish I wasn't told about it at all in my early teens or high school years so my mom couldn't say I tried to be an aspie or that I used it as an excuse. I am not sure why she feels that way for my middle school years but I told her I knew nothing about it then so how can that be possible if I didn't even know what it was then and I wanted to be normal?

Same here, Sabetheli.

I was only recently diagnosed at age 27, and I'm angry that I wasn't diagnosed sooner.

I was clearly not 'normal' as a child: I was a loner, I frequently made faux pas, I had unusual hobbies, I had no interest in the stuff other kids liked, etc. Whenever I made typical Aspie mistakes - such as being brutally honest instead of telling white lies - I would be yelled at and criticised. Due to issues with executive function, I almost never completed homework (but did better than average academically). Instead of being offered the help that I needed, I'd face punishments and criticism even from peers.

In primary school, the other children tolerated my weirdness, but in secondary school I was severely bullied - by a member of staff as well as the children. Feedback was nearly always negative, even though I wasn't deliberately bad. I ended up with depression and anxiety issues because I internalised the messages I received from others, truly believing myself to be worthless. Since I didn't have AS as an explanation, I thought I was just a loser who deserved all the abuse.

Now, whenever I make a mistake whilst socialising, I forgive myself immediately and tell myself "it's OK, you're autistic". I just wish I'd had that through my teenage years!

In summary: you most probably would've felt different anyway even if you hadn't had your diagnosis.

How come you were diagnosed later while I was such a small child when I was diagnosed? I only have mild ASD, and I lacked a lot of common symptoms as a baby and a child, such as special interests (I was interested in what my peers were interested in), and I often lied a lot to get sympathy or get what I wanted. Also I naturally made eye contact from birth, and I reached all my milestones at average stages and was fully potty-trained before 2 years of age. Plus I'm female, and I thought girls on the milder end of the spectrum got overlooked and not diagnosed until adulthood. I feel so male and severe autistic to have got a diagnosis in childhood.

I wish I knew the answer. Probably because I had really strict parents who preferred to attribute my failings to "lack of effort" than disability.

I was diagnosed at 29 and it has been a tremendous relief to know that I'm not alone and finally understanding my own mind better. It has been hard not to be a bit resentful that it wasn't caught earlier, since I've just felt like an as*hole my entire adult life and alienated all my friends.
It would have also been really helpful to my parents, who are always wondering where they went wrong in raising me (lack of discipline, disorganized house etc).
Now that I don't have the constant need to be liked and fit in to the mold of normalcy, I can finally start living my life for myself and not be stuck in this endless loop of judgement due to others' failed expectations of me.

It has really been liberating to let go of a lot of the self hatred that has weighed so heavily on me ever since my teens and being able to negotiate with myself, instead of tormenting me and trying to brute force my brain into working in a way it just refuses to do. I haven't told my parents yet about my diagnosis, because my dad is still hoping for a magic pill to fix me. I'm sure it will be heartbreaking for him to learn that my neural situation is permanent, but I'm hoping that he will appreciate that I'm not just lazy at least.
I didn't mean to hijack your thread, I just thought I'd share my viewpoint being in a completely opposite situation.
The grass is always greener eh?

It seems to be a problem both ways. Being told at a young age and not being told until older. Which is best seems to depend on the individual after they are grown.

I think perhaps a middle ground where a young child is told to a degree in a vauge simplistic way. Then expounded on when they're older.

It's a difficult one.
It would be easy for me to sit here and say "Well, my life would have been so much easier had I been diagnosed in childhood" because the grass is always greener, it's hard to imagine things being any worse when you feel like you've been through the absolute pits of despair.
Certain aspects of life would have been easier for sure, but others wouldn't have been. For example people laughed at the way I walked and the way I ran, adding to my self-conscious angst, but how would I have coped being sent to a special school surrounded by people having regular meltdowns or, if I'd remained in the school I was in, would I have been singled out for ridicule even more?
I was forced to adopt coping mechanisms and spent enough time among NT's to be able to mimic 'normal' behaviour to the point where I'm able to live on my own, provided I have some money (I'm not able to work). Life would have been very different for sure, but for better or worse it's impossible to know.

Don't worry, I wonder the same about you. I was a lot like you too. Had normal interests, played with other kids, reached my normal milestones and interacted with adults and with my baby sitter, I did fake crying and make fake sounds to get my parents attention because I didn't know how to use non verbal communication and gestures. My mom says I had my own way of communicating. I was also manipulative and did crocodile tears and then stopped at age 3 because I grew out of it and I think consistency is what did it, kids don't just stop unless they have consistency and have boundaries, I was out of diapers at age 3 and I am also female but yet my symptoms got overlooked and none of the doctors said I had an ASD but one doctor and some educators and a social worker noted I had autistic like behavior. I figure me being mild and female is what made doctors miss it over the years until 5th grade and then I got the diagnoses in 6th grade. It was actually my speech therapist that knowledge my symptoms when my mom told her I didn't have it because she had me tested for it in the 4th grade so she said I could just have symptoms then but not enough to fit the diagnoses. She was the first to suggest I may have it and my mom told he no. Then my therapist brought it up in 6th grade so that time my mom had a professional look it over and that is how I saw my psychiatrist.

Why did you get diagnosed when you were so well developed and lacked lot of symptoms while they said I didn't have it is what I always wonder. I found out it was suspected by my school district when I was five that I had possible autism-mild and then they said I was an unusual child because I am not classically autistic but have some autistic behavior. I was labeled unusual as if they were saying "This girl is so strange, they say she isn't autistic but yet she has some of the behavior, how weird." As if that isn't possible. I mean whatever happened to "autistic tenancies" or PDD? Those are labels doctors use on kids who have symptoms but not enough for the diagnoses. I was never given those. My mom says I was just Beth. I think that is her ow way of saying "You have a disability but there is nothing out there that fits your disability." So that is why I say they are just labels. If people know my background story, they won't take offense when I say they are just labels.

Part of me is glad I didn't know I had a disability or knew about AS at a young age because I feel I might have just used it as an excuse and expect special privileges. That is what I saw in some children who were special needs so if I found out I was one, I would have expected special treatment and think all rules don't apply to me and I should have special rules assigned to me like those other kids. I did eventually do this when I was 16 and I couldn't understand why I wasn't getting any. I had this impression this was how life is and I needed special privileges.

I also think if I knew about AS at a young age, I would have quit trying to be normal and not bother to learn social skills and I wouldn't know what my abilities are because I would have taken it too literal. I would have seen it as a pass to be rude and a be a b***h and not care about others and act spoiled and want things my way than trying to deal with it. I would have done short cuts. I might have used it as an excuse to quit trying to relate to other kids and playing with them after having troubles fitting in. I would have just given up. I did eventually give up but not because of Asperger's like my mom tries to claim. I think I got too worn out trying and I wasn't happy and I decided to not care what others thought of me and kids my age were boring so why waste time with them? Also my mom had taught me "what's normal? There would be no normal people in the world if normal meant you didn't have any problems or any medical issues."

Another part of me thinks none of this would have happened if I did know then about having AS because I was first told about it in 6th grade and knew nothing about it and I still didn't use it as an excuse to be different and to try and be different than trying to be normal. I really wanted to be normal and I don't think I would have even understood if mom told me in 1st grade or second grade and so on. I wouldn't know how to spell the name nor how to look it up so it would not have been possible to use as an excuse. But I wonder if my mom would still give me that accusation as a adult if I were diagnosed before 6th grade and told me about it then.


But yet my mom told me about my medical history when I was eight and I thought that is what made me different and still no excuses. So I had an explanation for why I talked funny or was weird but looking back it doesn't all add up but I didn't know any better as a child but when I got to 4th grade I knew I had more going on than just my medical history. By then I was older so I then knew but I still didn't use it as an excuse.

Sabatheli, I am in the same situation: diagnosed at age 43. I am married and have a daughter. I never suspected Autism, though I’ve had the difficulties and struggles of Asperger’s my whole life. I wonder if I would have had a better time if I knew, but my therapist reassures me that I would have behaved the same and made similar choices because that’s who I am. And that’s the hardest part of this diagnosis: accepting who I am with my limitations and allowing myself to be me. I am having many difficulties at my job and people are always on my case. I hate it and I dread going to work. I really don’t fit in and that’s the worst part. But they don’t know my diagnosis —if they did, I would be let go immediately and I can’t afford that. (My wife is permanently disabled and we have a little girl; I am the only income.) My NT act has been wearing thin lately. The bottom line is that I would be miserable no matter what, whether I knew my diagnosis before or not. Happiness and success has nothing to do with a diagnosis on paper and everything to do with ACCEPTING YOURSELF AS YOURSELF —that’s supposedly what makes life easier and more enjoyable. I just wish I could actually do that! Knowing vs. not knowing your diagnosis really is inconsequential when all is said and done.

I do enjoy that now having my diagnosis, it validates me a little. Yeah, I still have my struggles that I have always had, maybe a little worsened by my burnout (had I have known, I might have been able to mitigate). What I have now that I never had at any other time in my life though, is a feeling of internal acceptance. When I duff a conversation, or have to leave a social situation, I am not nearly as hard on myself as I was in the past. Still has an impact on my life for sure, those things still have consequences for failure, but I can shoulder those consequences with a little more understanding. Pre diagnosis I was an awkward, social failure. Now, I am an awkward social failure with autism. I am still working on figuring out exactly what that means.