They Missed It; They Missed Me


An except from Twirling Naked in the Streets and No-One Noticed…

 

An Introduction: They Missed It; They Missed Me

     I am a survivor; an autism survivor.

I have been torn down, pulled to pieces, and have had my heart ripped from my chest slammed on the floor and stomped into the ground. But—I am still here to tell about it.

I grew up in a world before autism advocacy; born twenty years before Asperger’s Syndrome was acknowledged in the U.S. I now hear talk about autism being an epidemic. There are more autistic children being identified than ever before.  I’ve heard people say that they didn’t see many autistic children when they were growing up, but I am here to tell you that we indeed were in your mist.

My parents did not notice, my teachers were blind to it, and my doctor’s misdiagnosed it. When they noticed me on tip-toes, they made me a ballerina.  When I twirled round and round, I was only dancing. When I had imaginary friends, they said that was just what little girls did.

When the light bothered me, I was allergic to sunlight. When smells over whelmed me, I had a sensitive stomach. When I only ate a few select items, I was picky. When I could not stray from my rigid routine, I was hard-headed.

When I thought I was smarter than my teachers, I was obnoxious. When I couldn’t stand certain fabrics touching my body, I was being a princess. When I cried and screamed, I was spoiled.  When I rocked back and forth, I was concentrating. When I sat alone, I was in my own world.

When I couldn’t keep up, I was not living up to my potential. When I didn’t think the way others did, I was just too smart for my own good. When I didn’t connect with my peers, I just didn’t care about them. When I misinterpreted situations, I was inconsiderate. When I asserted myself, I was inappropriate.

When the children’s screaming hurt my head, I was a bad mother. When I could not keep them on a schedule, or keep the house in tip-top shape, I was lazy. When I could not stick to a budget, I was irresponsible. When I couldn’t understand, I was stupid.

When I stayed in my pajamas for days, I was depressed. When I was overwhelmed by the world, I was agoraphobic. When I was tired and frightened, I had an anxiety disorder. When I realized something was wrong with me, I was making excuses.

The one thing my entire life’s experiences screamed, the one thing that was consistent, was that everything was my fault.

No-one recognized my autism; no-one saw that I had Asperger’s Syndrome. How could they? Asperger’s Syndrome, Aspies—I – did not exist; not yet.

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32 thoughts on “They Missed It; They Missed Me

  1. I loved this post. So beautifully explained. So perfect. It’s the best explanation for all those who are walking the earth now as adults. Undiagnosed or diagnosed as adults. The children today have much better understanding because their parents have much better understanding. Thanks to Autism advocacy our children often gain more understanding and open doors in the very places that many found closed doors and judgement before. Thank you for writing the things you do.

  2. I can hardly type, my hands are shaking so much. I had similar experiences in my 50 years. It was about 5 years ago I found out I have Asperger’s and it was like the weight of the world was lifted from my shoulder’s. My first thought was “I’m not bad; not wrong. It’s not my fault!” My family can’t understand how extreme this feeling is.

    I’m sorry if this comment is less than coherent. I can’t get my thoughts in order. But I just wanted to tell you that this post felt like you were writing exactly what my heart feels.

    • Hi Joe,

      You made my day! I’m sorry that you too went through but I am sooo glad that I can express what I suspect so many of us have been through. This is a long daunting project and I tend to lose steam, so if you will stick with me and kick me along when I slow down I would appreciate it.

  3. Great post. They blamed me for many of those same things too. And I knew all along that they were wrong. But I just didn’t know how to explain it to anyone. And I didn’t understand why I owed them an explanation in the first place.

    • Hi Aspie Kid,

      Thanks so much for reading. I wish I could say that I knew they were wrong all along, but I took all the blame and guilt inside of me. It is something I am still trying to shed with tremendous difficulty.

      I still continue to say that, “I should be able to…,” when I know there are somethings that I just cannot. But–I am still working on it.

    • Like aspiewriter, I always thought there was something wrong with me. Even now I am completely surprised when I say something that, to me is completely innocuous, and everyone reacts like I cussed out the Pope or something. The decades have taught me to, on some occasions, recognize situations where I might need to be more careful with what I say. But those are usually few and far between.

    • Hi Lexi,

      I don’t know where you live, but I know here in the U.S. adults are having a difficult time getting a diagnosis. I think in part because there aren’t many doctors who have experience with adults with asperger’s. I can only tell you that for me, I found the diagnosis myself initially–by accident. And after reading Aspergirls by Rudy Simone, I knew!

      I was fortunate in a sense that I have a wonderful doctor who listened to me (very rare indeed), and I was able to get an official diagnosis. I took many “tests,” if you can call it that. I think they are more like surverys, answering many questions. I also had full neuropsychological testings, including I.Q. tests. Hours of fun stuff!

  4. You just made my heart sing! I go to my therapist today to walk out with my “official” diagnosis after going through hell the last 39 years of my life. Thank you for gathering these emotions and feelings into words so perfectly!

  5. And it still has been missed in girls. My beautiful girl was 10 when she was diagnosed and that was after 4 years of misdiagnosis. I’m so glad you are telling your story.

    • Hi Sue,

      I hate misdiagnosis, but I am so glad that they finally did find the right name for it. Much of my misdiagnosis, the ones that really harmed me, and had consequences to them were in adulthood. That is when they really think you are crazy and want to load you up with drugs–can be very very dangerous. But, I promise I am getting there in the story, eventually. I hope you stick with me until then, it was a long road.

      • Definitely will. The doctors also experimented with various medications for my daughter despite her youth. I finally said enough and took her to a neuropsychologist for a 3 day evaluation and then tapered her off all of the medications once we had the correct diagnosis. We were still on our own trying to help her until a year later when she experienced severe bullying and I finally located a psychologist who was fimiliar with Asperger’s.

      • The list of meds that they “tried out” on me is rediculously long. I had to taper myself off of everything. I believe if left up to the “professionals” I would be in a padded room right now, at best.

        I’m so glad that you found someone. I am still having difficulty finding someone for my 13 year old who is familiar with Asperger’s, there seems to be no-one for him where we live.

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  7. I understand your experiences, but we must make sure the future is better. In the UK we have laws to help Autistic people, and yet these laws are ignored, and many have to sue Health boards to be noiticed. Aspergers awarness is growing, but it is still a miss understood condition, with too few high functioning persons able and willing to express themselves. Thankyou for writting Peter

    • Thank you for reading Peter. I am thankful that I can express myself in writing even though I have difficulty at times with my spoken words. I agree with you that Asperger’s is a misunderstood condition, as is autism in general especially in adults. It seems that even when talking with my children’s doctors, they seem surprised that I am autistic. Really? What do they think happens to autistic children? We become adults! Because much of our disabilities are “invisible” like executive dysfunction, we are over-looking, or people assume that we are lazy or not trying hard enough. They do not “see” the disability, therefore, they fail to perceive them.

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  9. After my 5 year old son was diagnosed with Asperger’s and Sensory Processing Disorder I have spent the past year and-a-half intently studying Aspergers, him, his quirks, his triggers, his stimming, his utterly beautiful mind so that I could be his best advocate in a non-Autistic world. Suddenly, at the age of 43 it hits me like a ton of bricks… I am an Aspie, too. No “official diagnosis” for me (no health insurance), but I don’t need one… I know it as surely as I know my own name. Stories like yours only reinforce my knowledge of this, and I can’t thank you enough for writing it because it is as if I wrote it, myself. You are awesome for persevering, for not giving up and for sharing!

  10. Oh, yes – I too know that feeling of: It’s Not My Fault. *Such* a huge relief.

    Now we just have to learn to deal with things as they are, not as people wish they would be.

    I was luckier in that the only diagnosis I got in my teens was clinical depression, which is still accurate (just read your post on Aspies and depression), so I wasn’t given a lot of inappropriate medications. But at the same time, being missed… yeah.

    🙂 tagAught

  11. Beautiful post, aspiewriter. I wasn’t diagnosed until I was 13, I’m 23 now. I went through the similar things you did. Unfortunately, 10 years later and I’m still going through it. But I suppose that’s their fault, not my fault, and it’s their loss in the end.

    • Thank you. Unfortunately my diagnosis came at 38 years old, so believe me I know what you are experiencing and it is not your fault no matter how many people want to make you feel like it is.

      Thanks so much for reading.

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  13. this is beyond amazing. i’ve been an autism self advocate/blogger who apparently “articulates things really well” but I’ve NEVER read something as poignant and perfect as this, nor have i been able to express it like that. I have trouble with being long winded. Thank you very much for this I can relate to what you wrote here SO much…I have goosebumps and tears. I’m actually going to show this to family/support workers etc..so they can understand things better. thank you thank you!! I’m A Girl Outside The Box on youtube, would love to connect 🙂

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