I grew up an ASD kid who went undiagnosed until adulthood, which was hard. I wonder, however, if growing up without knowing I was autistic was a blessing or a curse. Perhaps it was indeed both.
Please do not misunderstand me, I am glad to have a diagnosis. Glad to finally know what is “wrong” with me; glad to finally have been able to fit the pieces of the puzzle together. But this isthe thing–i didn’t know, no one knew, so no one told me, “I couldn’t.”
Today, I do have a better grip on my own limitations, and there would have been a lot of heartache avoided had I known. However, I wonder if I would have what I do today if things were different.
No one told me that I would never be normal. They didn’t expect me to not succeed, not find love, not have a family. I never considered these things could be difficult.
An email from a fan this week caused me to start thinking about how we view our ASD kids. What does the world expect if them; what are they bring taught about themselves? Are we telling them and the world around them not to expect much? Or do we encourage and reassure that their lives matter; that they will have good lives.
The truth is for some, marriage and family may not happen. But isn’t that also true for”normal” NT people as well? Life isn’t easy; it’s hard, for all of us autistic or not. Maybe we should, instead of focusing on the difficulties, the disabilities, and what seems out of reach, we should focus on encouraging, and reassuring them that they matter. We matter; we have much to offer; we can do anything we out our minds to!
An autism diagnosis is not the end of the world, our lives are not doomed. We just will have to live in this world seeing it differently, and find those who are willing to accept that to share life with.
Aspie Writer: Twirling Naked in the Streets--and No-one Noticed--Growing up with undiagnosed Autism 
I wasn’t dx until I was 35, and I do actually wish I’d been dx younger – at least before High School … at least I THINK I do … I mean – I can’t actually go back to that time and ‘see’ what would happen – like the old ‘choose your own adventure’ / ‘pick a path’ … and see how things would be different or if they would be better or worse…BUT I am imagining they would have been better (or at least different.)
Anyway, I now have a 7 yr old daughter who was dx with Aspergers at 5 years old. I’m hoping for her things will be easier with the right supports and understanding… that said – I am placing NO limitations on her life – no more than were ever placed on mine! … I’m assuming she’ll have a career and hopefully a life-partner and a child or two.
However, I’m also hoping that she’ll go into her adult life with her ‘eyes wide open’ understanding that her particular strengths and weaknesses and the implications that has in terms of choosing a career and a life-partner etc.
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I am contemplating persuing a diagnosis. I am 47 and a mum with a teenager son on the spectrum. Things started clicking into place with me when I started to learn more about my sons conditions. I have been misdiagnosed with general anxiety disorder. Don’t get me wrong I am anxious all of the time but I now understand my anxiety is due to sensory overload and social communication difficulties. I get things wrong all the time either I upset people by being blunt or take small things out of context. My dilemma is not how I feel about being labelled autistic but how others may view this. I am aware of the glass ceiling which limits opportunities for women in terms of their career and progression but a label of woman and autistic is double glazing. I can’t see diagnosis really being an advanrage in the world of work.
For me, it was a curse. I ended up a virtual lump of nothing inside. It sucks.
I believe I wish I knew earlier because I don’t think I would have been so hard on myself. My parents may still very well have been the same a-holes they were, but at least I may have had a better understanding and cut myself some slack.
An interesting question. I feel that I would have understood my daughter’s behaviour a little better if she had been diagnosed before turning 18 but, on the other hand, I didn’t put any limitations on her either. Now, I find that I am taking her Aspergers into consideration when thinking about her future – but I don’t tell her that!!
Great to hear from you again by the way and congratulations on your new little one.
Thank you! If you would like, you can also follow my other blog at aspiewriter.com I write there more often.
I’m generally please to have been diagnosed with AS last year after our son was diagnosed with PDD-NOS. While I can speculate about the past, I know that it has made the present more understandable in many ways and I don’t feel quite so lost and despondent about the future. I doubt that I’ll ever completely comprehend everything about myself or those around me, but it has provided a framework by which to view social matters within the context of my own interpretation, which reflects the way my mind works.
I did type out a rather lengthy response that was lost when I went to post it, so even now I have re-framed what I’ve said within a matter of an hour…. 😉
P. S. That should be “pleased”, just above… 🙂
I wasn’t diagnosed with AS until I was sixty when I was undertaking a course for pain management related to migraine. I suspect that it was better that I wasn’t diagnosed with autism as a child, as at that time children with autism were usually viewed as subnormal instead of being” different”.
My peers considered me an “egghead” and adults considered me socially clumsy. Once the diagnosis was made, it was like all the pieces fell into place.
Definitely how I feel–all the pieces falling into place after diagnosis. As a child, autism was looked upon as a kind of brain damage…sad.
I too spent much of my life undiagnosed. I share your feelings completely. It is such a relief to finally understand. Your writing has always touched me deeply. Thank you.
i only found out age 45, two and a half years ago, what a relief! but i was upset that i havent found out sooner, and the sooner the bettter.
i would have loved to know as a toddler and not wonder what’s wrong with me. not find love? i pretty much knew that already. i knew i couldnt make friends, that i prefered animals’ company. so it wouldnt have made a difference for me.
but every person is different as an individual. i thought of myself as stupider than stupid. i saw eggheads who communicated better and at least understood what people said to them, who could lit a match without breaking every match in the box first. because of this, i was afraid to learn self defense so people wont think i’m stupid.
finally, i did learn. but i coud’ve learned as a child, and it was something i really wanted to do. and if i knew, i’d simply tell the instructor i have asperger syndrome, and may not always understand and need to be taught a bit differently. i would’ve believed in myself more, understood myself. it’s a shame i didnt find out earlier.
I’ve thought the same thing about ADHD.
Didn’t received ADHD diagnosis with suprise dual “oh and Autism spectrum” (“Whaaaat?!?!”) til 26.
I believe that because I wasn’t diagnosed til late, that my ADHD limitations such as being unable to follow through something/pay attention, resulted in behaviour adaption and I have always, always, always figured things out from the start and made my own understanding and even new systems (which are better in all aspects)
This can be problematic though. Well, it is…
Being a super solver, and seeing so many problems in the World, and now coming to terms with overreactive empathy and wanting to help, the least troublesome part of this used to be spending extended periods of time writing detailed, accurate helpful answers for people (several hours on occassions), then having them select the “oh me to!” as best answers, which infuriated me to no ends and caused much confusion and pain, and happened so much that I even questioned my humanity, especially when first found out about ASD and it having similar symptoms to Sociopathy.
(I mean, how can you try to help try to help try to help, have it shoved back in your face, be attacked, called names and so on, and all you gain is negative and accumulating, you eventually ask and know how can you let this go on? I said to my “Psychiatrist” how can you see someone in pain and not help them? I was afraid if I did that I would turn into a Sociopath, afraid of it becoming a pattern of ignoring someone suffering (+overpowered analyctical etc ability)
I could go on and on about other disorders undiagnosed, which create support or opposition to my daily function or intelligence and even interaction.
But to stick to the point, if I had gotten an earlier diagnosis, my anxiety wouldn’t be so high, I wouldn’t of done so much damage to myself, and be so isolated.
I’m GLAD I wasn’t diagnosed til an adult. Even though I have been EXTREME pain and torture, causing damage to myself and relationships etc, I think that my intellectually abilities now are worth all of that, and if I would of been given the label of ASD as a kid, or even medicated for ADHD, I believe they would of had a stronger restricting affect on my acceptance towards life, than even the emotional abuse my entire childhood did.
Would be interesting to know what would happen if I was diagnosed early though and been restricted, because my emotional abuse (now CPTSD) equals biggest fear of being controlled. It could of gone either way really, but i’m glad it didn’t because i’m extreme enough as it is.
Now i’m learning how to be a bore, lol. Wink wink.
Finding out later, has it’s loses, but also advantages
Finding out earlier, has it’s advantages, but problems too.
With that said,
I think one of the most important lesson to teach/help kids as they grow up, who have been diagnosed with ASD, is how to stand up for yourself, know what boundaries are, how to assert boundaries, don’t tolerate rude or harmful behaviour to self or others, how to deal with such in a mature and affective way.
Emotional support is great, and so are life skills, but the skills above are shockingly overlooked for most of the World.
This applies to NTs of course too, but ESPECIALLY to ASDers.
I can’t begin to list the amount of positive benefits for the individual from this, and the number of negative events which can be avoided later in life, because of it.
My son was diagnosed with Aspergers last year (he’s 10 now) and I am now convinced his twin sister also has it after reading ‘Aspergirls’ (have just requested a formal assessment). I want to read more books for children… books that children could read to make them feel positive about their life and potential. Any suggestions?
Hi Renee,
Unfortunately there is so much negativity out there, and many books are no exception. However, I will keep an eye out to see what I can find. You make a great point here—finding things for those young people to read about autism that will inspire them to do great things, and to love and accept themselves for being EXACTLY who they are meant to be!