Anonymously Autistic – One of Many Invisible Women on The Spectrum

I am one of many anonymous invisible Autistic women. We are invisible or anonymous for many reasons.

Some of us are anonymous because we fear the world is not ready to change the way it sees Autistic people. There is something wrong with the world when a common response to an Autistic person trying to come out is “You’re nothing like Rain Man!”

Of course I most of us are not like a fictional movie character. Most of us are unique individuals. That is like me comparing all Neurotypicals to the cast of Beverly Hills 90210. Not all NT’s are hyper social just like not all Aspies are like Raymond Babbitt.

Some of us are anonymous because we like our privacy. We may tell our closest friends and relatives but find it hard to talk about our Autism with people we are not close to. Those of us who choose to remain anonymous are lucky.

There is one group of anonymous invisible  Autistic women that I am particularly worried about. It is a group that the world ignores, because many people still don’t know to look for them.

I was once one of these women. I am Anonymously Autistic now because I was missed and dismissed by doctors over and over again.

Growing up I was one of many invisible girls on the Autism spectrum. I felt strange, inadequate, and out of place.

My great grandmother died when I was in the fourth grade. I remember feeling defective because my sadness did not come out in me like it did in the people around me. I wanted to feel sad, and even though I might be sad, but could not act sad.

What was wrong with me? I felt defective and for the first time I questioned my own sanity. I was in firth grade wondering if my lack of expression meant that I was doomed to grow up into a psychopath.

This thought worried me for a long time and messed with my head quite a bit. If only I had known back then that I was Autistic. Maybe I would have known that inappropriate affect was normal for kids like me.

I didn’t find out about my Autism until much later in life, when I was almost thirty and my coping strategies no longer kept up with the demands of holding an adult job.

It was as if everything broke. Like a train off the rails, I was moving too fast and not respecting the boundaries that I didn’t know I had.  If I had known about my Autism I might not have made an ass of myself at so many networking events.

I didn’t know about my Autism. It was invisible until I heard the words of another amazing Autistic woman speaking about the way her mind worked. Temple Grandin is my hero because her words woke me up.

I always knew I was different, but now I have a better understanding of those differences. Knowing your weaknesses allows you to strengthen them and I am my own biggest project.

Temple was the spark that burned my invisibility cloak exposing me to the world of Autism and eventually lead to me bringing my world to this blog.

I’m no Temple Grandin but I am going to keep writing about Autism until we are no longer invisible. I may need a new laptop though – the letters are wearing off my keyboard already. 😉

 

 

 

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37 thoughts on “Anonymously Autistic – One of Many Invisible Women on The Spectrum”

  1. Temple Grandin wrote a book Thinking in Pictures it is because of that book I began question the possibility of having autism. I remember reading the book and Temple says very matter of factly I think in pictures. And my immediate thought was: Doesnt everybody? She explained the structure of routines and being taught manners and social cues.She explained things so the reader would learn about the autism mind….. I already knew because she was explaining me. She had the answers of a lifetime of questions about my odd thoughts and behaviors. I was 34 years old when I read that book.My life could have been so different if only I knew ….. I am haunted by my failures,the choices I made because I knew of no other way.I struggle everyday to keep it together,because falling apart only makes me look crazy…….must suffer from mental illness…..falling apart can leave me exhausted …..must have a sleeping disorder…..falling apart can convince me to start using drugs again….once an addict always an addict The truth is when I fall apart it is because my autistic brain short circuited but how do you tell others you have autism when it is much easier to believe the other possibilities: mentally ill drug addict who is depressed and needs more sleep….I can hear the whispers Leave her alone she will get over it…….Autism does not go away

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    1. Thank you SO much for sharing your powerful story! I actually was studying animal behavior and psychology when I first encountered Temple Grandin.

      As I drove down the road, listening to Animals in Translation via Audible, I remember becoming entranced by Temple’s words as she gave an introduction to Autism.

      She was describing my life and way of thinking in so many ways. I was in shock and disbelief – in denial for months afterwords.

      Wanting to disprove the truth in front of me I started researching Autism and found out that facts don’t lie – I am Autistic.

      Accepting this was the best thing I have ever done for myself and Temple helped light the spark. I will be forever grateful to her.

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      1. I want to prove to others I am autistic. I remember doing a research paper in the 10th grade;autism was the topic I chose. I started my research ( and remember the year is 1987) paper and began to really study autism. The more I researched the more scared I became. Even then at the age of 15 I was becoming aware of all the things I had in common with autism. I learned about the three core criteria needed to be considerd autistic.I could place myself in each area. Ofcourse I told my mother what I learned from researching autism;thinking maybe she would be able to see the autism in me.After all,she is my mother. My mother knew where I was going with this conversation and she laughed at me.Do you flapp your arms?Do you sit in the corner babbling in choherantly? No I did not.And so I gave up the idea of being autistic but I never ever forgot that assignment. Fifteen years later when my son was born my mother would always say to me ….he gets that from you or she would compare me to him. When my son was given the diagnosis my mother said to me Now I know why you didnt smile or talk until you were four,now I know why you didnt like me to hold you or hug you,now I know why you had no reaction when I waved bye bye,now I know why you didnt look happy to see me.All these years I blamed myself;thinking you didnt show affection because of something I did.All these years I thought you didnt love me because I didnt love you enough. My mother blamed herself. Thirty years she carried the guilt of being a bad mother.

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        1. That is powerful! Thank you. One of the first things I did when I told my mother about my diagnosis was to make sure to let her know that my Autism was genetic and nothing she did caused me to be this way (other than providing me with her genes). AS definitely runs in my family but we are all nerds so they blend in and nobody is diagnosed. I was only diagnosed because I decided I wanted to work in an office full of extroverts and became unable to cope. Funny how that works.

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          1. autism is definitley in both sides of my family and my sons father is definetly autistic.I posted a comment on saralaison page but I dont think it is showing up Something about approval needed? Would you mind looking and see if the comment posted?

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      1. My 13 year old son was cited for truancy even though his school knew he was suffering from severe anxiety and depression as well as having autism. T he school did not follow the IEP or recomendations from two different doctors. My son had to stand in front of a judge without representation at his first court appearance.We applied for public defender. I was told I didnt get one because it was a truancy matter. I applied anyway.Our next court date was set for trial, not pretrial…TRIAL! Several times I was told by the court adminstrator I did not get representation. My son and I went to court and there was two public defenders outside the court room;one for me ,one for my son. Both of the attorneys told us they didnt get the case file until last night. They would ask the judge for a continuance. The judge response to thier request?You want a continuance? the child will be placed in a juvenile detention center until our next court date. The judge asked my son what did he think? And of course my son who is autistic,clinically depressed and suffering from extreme anxiety just kept his head down,saying nothing. This infuriated the judge. The judge said YOU WANT TO SIT THERE LIKE A BUMP ON A LOG?YOU ARE GOING TO VON WAL,MAYBE THEY CAN GET SOME WORK OUT OF YOU! Then my son was handcuffed and shackled and taken 50 miles away. I am crying while writing this My poor son had already suffered and we had never been seperated. He wasnt a discipline case or disruptive. I did get my son back two weeks later at the trial.But talk about injustice,this is so wrong on so many levels. My son was afraid to fall asleep at night thinking he would wake up back at the group home.He still has nightmares and both doctors warned the judge on the day he was taken away that the placement would cause irreversible harm and placement would only make things worse. The judge ignored the letters.

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        SEPTEMBER 21, 2016 AT 4:19 PM REPLY
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          1. I am grateful he was returned home after two weeks because that doesnt happen. Most of the time 30days is the least amount of time an agency or group home will keep the child.Insurance purposes,30 days or they dont get paid! My son is not defiant or non compliant.His crime was missing 11days of school.Seven is the limit.My son was taken away because his case manager wrote an IEP depicting my son as a child who refused to go to class,refused to do work,refused to participate in at school. And I was portrayed as a mother who didnt care about his education and allowed him to miss school.I did not agree to this IEP so I refused to sign it…..un coperative parent. I went to meeting every Monday morning for 3months begging the IEP team to please follow the doctors recomendation,my sons mental health was declining. But the school would not accept the doctors medical opinion.Only after he was sent to group home did they put in place the recomendation. Why would they do that? Because any improvement in my son’s education could be due to the fact he was scared of being sent away and now he does his work!The truancy matter happend because I called the department of education concerned my son wasnt getting an education. Department of Education called the school and ofcourse its not thier fault the child hasnt learned anything;he misses alot of school. The day I called the department of education is the exact same day the petition was filed;citing my son has been truant from school and this child is in need of protection!

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          2. That is insane. I missed a lot of school too but eventually the school told my mom that if my illness was chronic I would have to learn how to attend school while sick. With constant vomiting (due to the Sensory Overload) I wanted to die and remember wishing my illness would kill me. I wanted so badly for it to be terminal – I was in THAT much pain.

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          3. my son threw up every morning,had insomina,panic attacks and migraine headaches but school therapist said it was his home life not school that was causing him to be ill and he just wanted my attention

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          4. severe anxiety and sensory overload Last year the school did their evaluation and can you believe right in the evaluation it states: There were no evaluations done for this evaluation.So now the school has agreed to pay for independant evaluator who I chose. My son’s psychatrist is doing the evaluation. She is the director of Blu Stem in Rochestor Minnesota. Her name is Dr. Susan Jenkins. If you have time look her up. She is awesome

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  2. Also reblogged this. Women with various invisible abilities are less encouraged to self-advocate. Passing under the radar doesn’t allow us to reach our potential.

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  3. This breaks my heart to read this because the word invisible is the word my 9 year old uses all the time to describe how she feels, particularly in school. If it makes you feel any better, or changes your perspective in any way and cuts down on your wonder as to whether things might have been different had you known about your diagnosis earlier??? My daughter was diagnosed a year ago at 8. I am one of the few who truly tries to understand her and still she accuses me of not getting her, yet I try harder than anyone. I’m the one who figured out ultimately that she had Aspergers and then finally got it confirmed by her pediatrician after it was originally suggested by the neurologist. It took me a year to see it in her, but then it hit me all at once. After telling her and explaining what Aspergers and Autism are, she is more self conscious then ever it seems with her knowing her diagnosis. I know every person is an individual, maybe it would have helped you, but someone in the same situation (my daughter) knowing earlier, and it has not helped her to make more sense of her world. It has made her feel more alienated knowing that she is diagnostically different when all she wants to do is fit in. I have tried to point out all the benefits and good things about Aspergers, but she hates that she is. She’s embarassed by it and feels invisible and ignored by everyone in school, teachers and students alike. It’s such a paradox because she feels like she wants to blend in and not be different because she knows she is quirky which causes others to be put off by her, and the nature of blending in is to not stand out. However, by standing out, she becomes more invisible because she becomes the outcast and everyone ignores her as if she doesn’t exist. Or when they do pay attention it is to tell her to go away or to boss her around as if she is inferior to them. It is a cruel oxymoron. I hate the negative invisibility that Aspergers brings along with it. It breaks my heart.

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    1. Maybe knowing would have helped me, but honestly sounds like your daughters childhood is a lot like my own. Bullies knew that I was “different” even before I did. The label has helped me as an adult to accept myself but I hated my childhood.

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  4. Labels have definitely helped me makes sense of my world as an adult as well. It also makes me contemplate whether it would have helped me to have had them when I was younger. I can only hope that as she gets older that knowing this will help her navigate her world and that she will be able to start dispelling her anger and find acceptance. It’s encouraging to know that you had a similar childhood and found some peace later on in knowing.

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  5. “…wondering if my lack of expression meant that I was doomed to grow up into a psychopath.”. When the psychologist read my diagnosis to me, it sounded like she was describing a psychopath (she told me my brain scan showed a lack of emotions); so I asked her if I was one. I’m not a psychopath, but it got me looking into how Alexithymia traits are actually distinctly separate from conditions they are comorbid with. Anna, you don’t seem to have the emotional make up of a psychopath, but if you did then you still wouldn’t be one; you’d still be autistic.

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