My Autism Was Obvious But Everybody Missed It

I grew up without and Autism diagnosis. All I knew was that the other children thought I was weird and I did not fit in. Growing up I wondered what was wrong with me. Feelings and emotions that others had escaped me. I remember feeling disconnected and thinking I was incapable of love.

Recently I watched all of the home videos from my childhood starting with my first bath. Even at a very young age my Autism was obvious – if you know what to look for.

Being my mother must have been difficult. In almost all the videos I want nothing to do with her. She (and everyone) calls my name over and over again, but I act as if I cannot hear her. I have no interest in my mother in my baby videos. It is as if she does not exist to me.

My toys however DID exist, but not the dolls and stuffed animals. Little me LOVED the toy phones, radios, and record players. Anything mechanical with buttons to press or wheels that spun, and I had no interest in sharing these items and experiences with my family members.

Over and over again, my mother enthusiastically said my name in a sing song voice, but I did not even flinch. Eventually I learned, out of fear, to pay attention to my mother when she called me. When I became a teenager, failing to hear my mother would bring out her wrath and got me into trouble.

Another marker for autism, stereotyped repetitive speech and movements filled all my videos. I flapped my hands, spun in circles, rocked back and fourth, and in an earlier video when everyone is singing the birthday song to my aunt, I seem stuck saying “happy balloon” over and over and over again (as I flap a balloon in the air like a maraca).

Even in later videos, at about the age of seven, my verbal and physical stims are hard to miss. It is as if I cannot stop moving. There is a video of my step father holding me still and tickling me, watching it makes me want to cry. Doesn’t he know?

Being tickled was the worst and being held still was almost as bad. I say over and over again “let go, let go, let go!” in the rhythm to the song playing on the radio as my family sings along. He was torturing me, and laughed as he did it. I hated my step father.

There are things that I remember about my childhood that we did not have on tape. My mother would always telling me “Look at my nose. Look at my nose” when she spoke to me, trying to teach me the eye contact that has never come naturally.

I also remember my family constantly reminding me to “use my indoor voice” becase I had a VERY hard time modulating my speech when I was younger, I still do from time to time if I get excited. Sometimes when I am feeling extremely enthusiastic, even now, the tone of my voice becomes squeaky and high pitched.

Thirty years ago Autism was not as well known and understood as it is now, and was primarily thought of as a “male disorder”, but still I remember my mother fighting back when the teachers at school tried to suggest she have me examined by a professional.

She was protecting me. I know that, but can’t help but wonder how my life would have been different if I had been diagnosed as a little girl. Would I have been diagnosed correctly or would I have been heavily medicated with Ritalin like so many other kids were back then?

I will never know because although my Autism was obvious everybody around me missed (or ignored) it.

 

For you visual learners – more info about the early signs of childhood Autism in the video below.

Early Signs of Autism Video Tutorial – Kennedy Krieger Institute

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31 thoughts on “My Autism Was Obvious But Everybody Missed It”

  1. Your not alone, growing up felt like some one put a blindfold on me and I got punished anytime I bumped into anything. Stimming always got me in trouble, which would cause more stress. I was bullied, shamed, and not accepted by my peers and family.

    Your very lucky though, you have video, all I have is memories. I have memories of tests and talking to shrinks. Your right, they did not know enough about autism. Instead blamed my stimming on ADD and I was put on Ritalin, which made me get bad headaches. The school system wouldn’t let me go to school without it, even when my mom realized it was harming me. I was stuck taking it for five years. My mother wanted me to get the help I needed, but the system let her down.

    Liked by 1 person

    1. Thank you so much for sharing your story. I am deeply saddened that you had to go through that. Even now many Autistic children are being misdiagnosed with ADHD and given Ritalin, which does more harm than good. That is why we need to share our stories and get the information out there.

      Liked by 1 person

  2. My husband is autistic, a highly functional autistic, just the same. Reading about autism for the sake of better understanding my husband, I have noticed that I do the same. Looking back into my nephew’s lives, I can see the characteristics. Looking back onto my life, some 40+ years, I can see some but not to a big intensity.

    I have been diagnosed with bi-polar, manic-depression, and ADHD. Interesting combination. Now, I’m wondering if I was diagnosed correctly in my early adulthood? Hindsight, they say is 20/20.

    Liked by 1 person

    1. Here is the thing that is unfortunate, because Autism is still thought of as a primarily male condition, many who have the power to diagnose it will misdiagnose women with other conditions (the ones you mention above actually tend to be quite common). It is hard to say, as I am not a medical professional, but perhaps it could be worth another look by someone who has knowledge about adult women on the spectrum.

      Liked by 1 person

          1. Sounds good! I am personally trying to flood April, Autism Awareness Month, with stories about the positive thing about being an Aspie. It bugs me that the month of April is so focused on prevention and being aware of our struggles and shortcomings. Why is there not a month focusing on our triumphs and skills? It really irks me. I think us Aspies meed to take back Autism Awareness Month from the NTs talking about us. If it’s our month we shoud take the stage ourselves. Want to focus on the positives with me through April and tag them Autism Awareness?

            Liked by 1 person

          2. I think they are aware of us but they do not wish us to be included a bit like black rights or lgbt rights. They are scared of difference in case were better. Yes that may come across as a bit arrogant and elitist but we’re innovative.
            I think we should rename it something like autism positivity so the focus is clear there is nothing wrong with us and a lot right which should be celebrated.

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  3. My son’s biggest lament (he’s 8 and absolutely loves girls) is why there aren’t any girls in his classroom. He means specifically his Autism support classroom where he goes to learn the way he learns in Math and reading composition work. There are 4 autistic boys no girls. Last year in Grade 2 he really began to be a social butterfly and truly want to be with the other kids, have friends and truly enjoy them. He then discovered girls…only 4 out of 24 in his grade 2 class and they were all nice, sweet and helpful. He then didn’t want to leave that classroom. This year he still laments that there are no girls in the ASD room but is making new friendships with boys. He is asking the big questions why there aren’t as many Autistic girls….I told him that I think that they are not being diagnosed and are around.

    The lack of awareness of Autism must have made growing up hard. By sharing on your blog you will make a difference as others read and identify. Thank you.

    Liked by 2 people

  4. Thank you for finding my blog! It has led me to you and your insightful posts! I’ve spent a lot of time reading your blog this evening 🙂

    Liked by 1 person

  5. Thank you for writing this! I shared it to the Seriously Not Boring FB page. I can relate to feeling “different” all through school and not knowing why. It is a strange place to be.

    The part about people not respecting your body autonomy bothered me quite a bit. It happens sometimes to my son when others tickle him or play rough. I can see that he needs it to stop and when when he OR I say so they don’t believe us, and when he gets upset they either get THEIR feelings hurt OR say that he is reacting that way because *I* gave him the idea to be upset. SO frustrating!

    Liked by 1 person

    1. I was always a talker. I mimicked a lot, even when I did not truly understand the meaning of what I was saying. They call it echolalia. I liked to repeat the same words over and over again out loud until they sounded funny. I still repeat myself now, and I think I may be verbally “Stimming”. My husband jokes that I like to talk just to hear my voice, which may be partially true. Bot sure why some Aspies talk and others wait, but my baby sister didn’t start talking until she was 3 or 4 years old. She is very intelligent but extremely shy, much more shy than I ever was. As I grew older I had a hard time being careful with my words. Sometimes they come out before I have time to think, which has hurt my self confidence as an adult now that I care more about the opinions of others. My grandmother read to me a lot, and I had a ton of books and educational games that were above my grade level growing up. I also watch a lot of documentaries. Another thing I remember is that the adults kn my family always spoke to me like I was one of them. No baby talk. Not sure if this really helps or not.

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      1. Thank you, yes i think it helps, at least it helps in understanding stuff. My boy, i think is on the shy side, he sometimes says a word and after that hides his face and just shuts down, and goes to play with his toys. Or he passes by and “accidentaly” gives me a kiss, but after those moments he hides or just looks at the floor. I can see that he knows a lot of stuff but i think its hard for him to express himself. And for me as a mother its extremely hard because i dont want to force him to do uncomfortable things but i have to tech him how to get by in this world, and sadly this world can be really cruel with people who are different.

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