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Coming Out Autistic – When You Don’t Believe

Coming out Autistic is hard. It’s even harder when the person in front of you doesn’t believe a word you are saying.

People who’ve known me for years say things like –

“Why are you complaining all of the sudden? You never used to talk about Autism or complain about these problems before. It’s like you’re happy to have a disability. You just want attention.” 

 

These people are less than half right.

Yes, people who have known me for years have never heard me complain about my sensory issues. When I was a little girl and tried to explain my problems to people nobody believed me – so I stopped.

When I was in school I was very sick. My school building’s busy environment and florescent lights were painful and made me physically sick to. The doctors told my mother that there was no physical reason for my sensory complaints and that I was making them up to get out of school.

There were no accommodations for me growing up so I spent my life sick, in pain and discomfort.

My mother told me I had to go to school or she would go to jail, not wanting to loose my mother, I sucked it up and went.

Side note – remember Aspies take things literally. Be very careful what you say to your children.

 

I suffered in silence for thirty years.

I’ve always been different, but my mother told me never to reveal your flaws – so I learned to hide my confusion and executive functioning problems from the world.

Keeping up appearances, trying to be like everyone else and holding myself to an impossible standard, was what eventually lead me to an Autistic Burnout (Autistic Regression).

Finally as my sensory symptoms intensified, after years of confusion and being told that “everything was in my head”, at the age of 30, I received a formal Autism diagnosis.

Am I happy to have a disability?

No. I was chronically ill my entire life and everyone always told me I was faking it. I am happy that FINALLY a doctor has an answer for me. After years of searching I know WHY I am always sick.  I am happy that I finally have the answers and information needed to take care of myself.

I am happy to know that my “illness” is not something more serious or terminal. Part of me used to think that I might have some sort of cancer or rare disease that might kill me some day. This thought is gone now.

They are also correct about my obsession with Autism being recent. 

I was Anonymously Autistic for thirty years and didn’t even know it.

I never spoke about Autism before learning about Autism. Is that really so strange?

Until accidentally stumbling across Dr. Temple Grandin (my hero) I didn’t know what Autism was. Listening to her words and the way she described the way she experienced the world was a shocking revelation to me. I will be forever grateful for the work she has done educating the world about Autism.

Here is where people always get things wrong. 

I don’t want attention. Most of the time, due to my social anxiety, I wish I was invisible.

I’m not trying to complain when I point out a sensory trigger. 

Now that I know what’s going on with my body and brain, it is easier for me to understand my triggers. People say I am complaining when I ask for simple accommodations, like a change in lighting or to wear earplugs. They say, “You never asked for these things before.”

I’ve always had triggers, but I had learned to ignore them, making things worse. All because people don’t want to hear me “complain”.

I am reminded of my mother’s words – “You’re not dying – get up!”

They don’t know about the secret headaches and physical pain caused by certain sensory experiences – if I try to tell them they accuse me of complaining or exaggerating.

I’ve been getting up and acting like everything is okay for a long time now. It’s tiresome but apparently I’m so good at passing that even some of my closest friends can’t see (and refuse to believe in) my Autism.

It hurts that they think I am lying or crazy, but I try to remind myself that they are only responding to what I’ve let them see over the years. They only see the tip of the iceberg.

Do I show them more or let them go? I get the feeling they don’t care to know more.

Luckily my immediate family has been very supportive and encouraging. They remember how I was as a child and don’t doubt the diagnosis. I am grateful to have their love and support. Coming out to them was easy because I was not met with doubt.

Coming out Autistic is hard for a multitude of reasons – people don’t believe you, people don’t know what Autism is, people think Autism can be cured, people think Autism only affects children, the list goes on and on.

Hands down the worst thing about coming out is when you try to come out to someone close to you and they basically tell you – “No, you’re making this up. There is nothing wrong with you.”

Cut down like a tree.

When you don’t believe it hurts so bad that I want to stop sharing but I can’t because the world needs to know – for all the other Anonymously Autistic people in the world.

#AnonymouslyAutistic #ActuallyAutistic #SheCantBeAutistic

 

 

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66 thoughts on “Coming Out Autistic – When You Don’t Believe”

  1. yup. tried to tell the last gf, her reply “i dont think you are.” all the worlds amateur psychological expertise shooting down years of search and questioning with 5 seconds of knee-jerk judgment.

    maybe theres a diag in the dsm that explains hyperlexia (which my whole family knew about) and dysgraphia (which mystified us all, especially me– how can anyone STAND to handwrite more than 1/4 a page of text? after that much it becomes pretty awful) as well as all the senstivity to light and sound (no youre right, im just looking for something to complain about.)

    be especially wary of anyone with bipolar, borderline, or narcissism as they will (…may) try to compete with (and minimize) any challenge you go through. im hoping i dont have to add ptsd to this list at some point (which i have myself.)

    as for friends that are good friends in any other situation– people are quick to reinforce what they dont know or understand about it. they want to help, and seem to operate under the assumption that the best way to help is to tell you that your problems arent as real as you think they are. it only goes one way of course– try to to tell them their problems are all in their head and they get as defensive as you would.

    i think societies penchant for quick fixes and easy answers are a death to awareness (and acceptance) about any of this. one of my best friends is holding onto a copy of “the science and fiction of autism” and i said “you dont have to read it, just page through it casually. you will learn tons.” im not so sure– because alas, she always seems to be. you know the real problem with asd? no one knows anything about it, so they cant help, so they dont want to think about it.

    as nutty as that sounds, its been my experience with my own family and anyone i talk to. it really, really looks like “youre just being negative!” so thats science now– at least until theyres a “cure” they can throw money at (yep, i know…)

    so heres a tongue-in-cheek question for you, from one of us to another: is watching the x-men movie a little “too close to home?” if the franchise hadnt existed long prior, i would swear it was propaganda from one of ours. i would be on charles xaviers side of course– but you can plainly tell that its all uphill from there.

    Liked by 2 people

    1. You hit the nail on the head with that one. Nobody really knows about REAL autism or understands it. THAT is why I blog… and for the X-men – I’ve always loved them and NOW do relate to them on a VERY deep level… We are the next generation of mutants – right? #neurodiversity

      Liked by 1 person

          1. on an unrelated note, you must read my book someday. (its a free download, and licensed for remixing.) i actually dont care if you read it or not– but it exists on the premise that anyone can learn to code. the system (not the book itself) is aimed at the 5 years to 70+ years age range– and to use absolutely no time that could be better spent on something else… for purposes of “true computer literacy(tm)”(not really tm, jk.)

            and i hope you publish your stuff (this blog) as a book someday. you can publish anonymously as a pdf or epub, if you are careful not to let your real name sneak into the file. an accessible, non-stuffy book about how different people struggle with autism for understanding and acceptance? priceless.

            Liked by 1 person

          2. please, skip the introduction! feel free to skim it– or go over it when youve read the rest– but its the biggest reason (apart from a few typos and minor layout issues) that i call this a draft version.

            its the only entry here: https://codeinfig.wordpress.com/2016/05/10/ and please feel free to use that page for any comments, questions, and totally free support for the related programming environment if you should ever need that. its all in the public domain and on the internet archive, etc.

            im not usually this shameless or this forward, but in a few days the digital landscape might change forever. we need more literacy as soon as possible.

            and if you ever want to start a “charles xavier school for autistic children” id be happy to lend a hand as a computer teacher, and as someone who knows a fair bit about autism (i can tell from your blog, you know more.) we cant use that name obviously 🙂 if i live long enough, i will either start a school or a library, or both.

            Liked by 2 people

  2. I’m so sorry to hear about the negative reactions you’ve had, but the work you’re doing to educate people with this blog is so important. Creating a culture of understanding and support for people with autism is the only way to make things better for the next generation – your brave, articulate sharing of your experiences is the embodiment of all that is good and helpful.

    Liked by 3 people

  3. I can very much identify with most of what you say. The only difference is that my assessment is this week and while I have definitely made it clear that I have problems coping with life similar to my son, I haven’t yet come totally out the closet as autistic. I know I am but I think I need a professional to listen to me, via my notes, and see me for who I really am and then tell me, ‘Yes, I agree with you’. That’s just me. There is no guarantee that they will, especially if that particular person doesn’t know much about female Aspergers but that doesn’t mean that I am not.
    I will disclose because I am all about awareness and I’m not ashamed of who I am especially now that I understand why I am me. I am expecting some people to be surprised because they’ve never known the real me because that has been mostly hidden for 40 + years. However, I am also at the stage of life where I don’t care so much what people think of me. Life does that to you. They can accept who I am or not. It’s their choice. It’s not going to be easy but at least I will know who is with me and who isn’t and those who will turn their back on me because of the word ‘autism’ I can do without. It’s a shame that those people who tell autistic people that they are ‘making it up for attention’ can’t trade brains for a week. Live our lives, THEN say we’re making it up for attention.

    Liked by 2 people

    1. “I am all about awareness and I’m not ashamed of who I am especially now that I understand why I am me.” – Me too! That is why I blog if we have more awareness it won’t be so hard for Aspies to “come out of the closet”. Nobody should feel shamed for being born different.

      Liked by 2 people

  4. Another thing people need to understand is that you may not have qualified for an autism diagnosis as a kid because autism was thought of differently then than it is now. Back then an autism diagnosis was mostly reserved for those kids with severe language problems who never formed meaningful connections with other people. Now autism is thought of as being on a wider spectrum than that but unfortunately some people still hold on to stereotypes about autism and think of it as the way it was viewed in the past.

    When people tell me they can’t believe I’m on the autism spectrum, it’s usually an attempt to compliment me on passing for “normal”. Some people have accused me of using autism as an excuse for my behavior. That’s never a fun thing to hear.

    Liked by 3 people

    1. Kira, Anna stated in one of her blogs that Temple Grandin is her hero. I really don’t know much about TG, but I’ve seen a few videos by her, and she seems to have HFA or Asperger’s. I had heard that TG had one of the earliest autism diagnosis in this country. So I thought that meant that an autism analysis was possible for somebody with HFA back in the 50s. Your comment made me look this up, and I found out that TG was diagnosed for autism in the 80s; her early diagnosis was for brain damage (that was back in 1949 or 1950).

      Personally, if I’d been diagnosed in 1980 it would have made major changes in my life (in a good way, and I was already in my late 20s). So far, a diagnosis in my 60s hasn’t had any concrete, positive results.

      Liked by 1 person

      1. Yes, I’m familiar with Temple Grandin. High functioning autism diagnoses did happen in the 80s but they weren’t as common and different criteria would have been used to arrive at the diagnoses. Temple Grandin did not speak until she was three or four years old so she fit the classic autism criteria of struggling with language.

        I was born in the 80’s. I started speaking when I was 9 months old and quickly developed an impressive vocabulary. I had a lot of deficits that were consistent with autism but since language was one of my biggest strengths an autism diagnosis was not even considered for me as a child.

        Now that the diagnostic system has been revised,I probably would qualify for an autism spectrum diagnosis these days. I just need the testing to make it official.

        Liked by 1 person

  5. You’ve to know that a lot of young people are diagnosed oday as being autistic. My son should be too, although I did not bring him to a doctor. Why? Because I do understand his ‘pure’ nature. Autistic people don’t like hard people, don’t like shouting, don’t like to be confronted… They close themselves for a situation they can not handle and that is exactly what they should do not to become sick. I have some autistic ‘qualities’ too. In fact I believe that all those people are too sensitive for this hard world, with all those rough triggers. Some people say that high sensitive and autistic people will change the world. The more they are (and the number is growing), the more people have to adapt to them instead of the other way round. They will make that world more aware of things. Why? They are honost and they live by the heart. So please try to look in another way at yourself, and not by the eyes of doctors who like to label people who are just a little different, your mother or by people who simply don’t understand your ‘gifted’ nature. Explore those gifts… Maybe you can write books to make people aware, draw, play very sensitive music, anything… People like you (and my son and me), we want to live by our heart… Pioneers for a better world! Did you ever hear about chrystal children or indigo children? Google it..and enjoy!

    Liked by 2 people

      1. Normal = the biggest group, but the so called chrystal children are now growing in number (since the sixties) – so in the near future the ‘not sensitive’ people will be exceptional. Which label will ‘we’ give them when they become a minority? (joke) The sensitive children become adults and they will bring more awareness… about anything in the world. Why? They have rather independant minds, if they are not too much destabilized during their growing up, or doubting about themselves because they don’t fit in (until now, but wait and see…).

        Liked by 2 people

  6. I’m finding a certain kinship with Emily Dickinson lately. She was gregarious at school and had many friends. I feel like she was “passing” as neurotypical, and as the years wore on her, it would explain selecting her own society and shutting the door as she grew older. I didn’t know I was Autistic until I was 40, and when you talk about it, people do definitely say you’re 1) obsessed with Autism and 2) making things up for attention. I feel like we only have so much time we can “fake it” before we get into that “old person, eff it all” phase. THAT we have in common with neurotypicals. But our old person phase comes younger, I think, when we’re just spent from all the years of faking things. How were we to know that 1) we didn’t think like you all and 2) the world wasn’t built for us? Once we know, we can stop fighting our true nature, but that only means we have to fight OTHER PEOPLE instead. But it takes a long time to figure out our triggers since we stuffed them down into ourselves for so long, and that’s what neurotypicals simply don’t understand. They can cut us so deeply we stew about things forever, yet we kept all that inside. When we now know that that’s not “normal” and speak up, we’re ostracized. It makes it hardly worth leaving the house anymore.

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  7. YES to all of this. I still have not come out publicly on my personal Facebook page as I don’t know what reaction I’ll be met with or if people will think I’m just attention-seeking. Since receiving my diagnosis in August, I’ve just been telling people individually as I see fit, as I feel like it is “the elephant in the room” and I want people to know and understand this aspect of me, but recognise that not everyone in my periphery will be as understanding and accepting as my immediate and extended family. I’m working on a blog now about Autistic/Aspie Burnout and will be referencing this blog post. 🌸

    Liked by 1 person

  8. Thank you for your boldness in continuing to share your story. I cannot imagine how frustrating or difficult it must be, but the fact that you keep doing it and taking care of yourself speaks tremendously about you. Keep on speaking up. Keep on taking care of yourself, even if that means acknowledging that some people need to be distanced. Keep on being you.

    Liked by 2 people

  9. Great post. Your words move me deeply and make me think about my son. Your story inspire me to continue talking about autism. We have to fight stigma to make this world a comfortable place for everybody. You are not alone! Keep writing!

    Liked by 1 person

  10. Am I happy to have a disability? I I could have written this question. I was diagnosed with Tourette’s Syndrome and OCD at 49. I’m not happy to have this, but I am relieved to put a name to it. I’m relieved that I finally understand my tics and I no longer go to the doctor to figure out what’s wrong with my eyes or my throat. People who make such insensitive remarks need education… the point of your blog.

    Liked by 1 person

  11. Thank you so much for another fantastic post. My son wasn’t diagnosed until he was 11. He’s very high functioning, so to the average person – he’s just a rude teenager. Since he doesn’t read social cues very well, he comes across as rude. After having his peers ‘not get him’ for so long – he stopped caring. Knowing what is going on with him has helped. Temple Grandin’s story has been very helpful – as well as blogs like yours. Thank you!!

    Liked by 1 person

  12. Believe it or not, I understand wanting to be invisible. I had a childhood friend who was an “Aspie” and we got along great because could talk about anything and if what I said was stupid, he would come right out and tell me. I knew he didn’t mean anything mean by his honesty, that’s just who he was. He’s one of the few people who didn’t think I was weird.

    Liked by 2 people

  13. My husband is an Aspie; he is 61. I figured it out when his sister who is Autistic came to live with us after her mom died. (Yes, I live with someone who is low-range autistic and someone who is a high-functioning Aspie. ) While reading up on autism to help me deal with her, I learned about Aspergers as well. When I showed stuff to my husband, he agreed he’s an Aspie. I think he was relieved, but so much of the old tapes are still there – the “you’re stupid” because he can’t read social cues is well ingrained in him.

    I’ve mentioned it to a few friends and relatives and most deny that it could be true. He’s can’t be Aspergers. I can’t be right. He has learned so many skills to be socially “normal”. But living with him day in and day out, yeah, he is !I’ve learned to spot his trigger points as well.

    Then I realize that most of his relatives denied their sister was autistic for years as well – and she is on the low end of the scale – borderline non-verbal; socially inept. While it’s becoming more common to be diagnosed today, anyone who is older just didn’t have that as part of the culture. When we originally began looking for services to help us with his sister (about 15 years ago now), no-one had ever heard of an adult with autism! Everything was for kids.

    The world is changing, slowly. But “coming out of the closet” on the Autism Spectrum is still a tough thing to do.

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  14. Reblogged this on Pictures from Around Me and commented:

    With empathy seeming to be diminishing in the world right now we need to be reminded that some people are overcoming enormous challenges just to get through the day. The blog posts from Anonymously Autistic are always worth reading and this one in particular highlight the importance of showing understanding to make the world a richer and better place.

    Liked by 1 person

  15. Hi,
    Maybe when you came out to that person who is close to you, they didn’t believe you because when you are in their presence you are not withdrawn or shy/quiet. You don’t SEEM any different from anyone else. I have a great niece with autism. She is beautiful, smart and caring. We treat her the same as we do her brothers. But I must admit we do try a little harder without her knowledge. God bless

    Liked by 1 person

  16. When we fit the narrative and don’t rock the boat, we get better treatment or at least no negative treatment. Your bravery to share and be a light for others to know they are not alone is nothing less than stellar. The more you speak of your diagnosis, the more I ponder about myself, considering I have, at maybe too many points, the same issues you speak of, and post of others from their youtube videos. Thank you for being able to step out of your own shadow to use a flaming signal that most people direly need in their lives. Thank you.

    Liked by 1 person

  17. Hi Anna

    Keep writing! And keep doing things that help you through your day. No one blinks an eye when a cancer patient is tired and they should be just as kind and tolerant to your disease.

    I get staying anonymous… I haven’t even told my siblings I’m I’ll, because to them mental illness is not real.
    💙

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  18. Thank you for this post. I came down with chronic fatigue before it was recognized as REAL — but I was in my 30s. Having people tell me I was just looking for attention, liked complaining, was just lazy, etc. — was hard enough at that ad an adult. To have your experience continually dismissed as a child had to have been unimaginably horrendous physically, emotionally, and spiritually. Congratulations on your sanity.

    Liked by 1 person

  19. The only person to immediately believe me when I first broached the idea that i could be Autistic was my husband. When I read the signs and signals, he nodded to all of them and punctuated several “Yeah, that sounds like you babe.” My parents, siblings (especially the one with an Autistic son, who I now understand even moreso), and other relatives are quick to scoff and deny. Some of my closest friends are hesitant, but they’re also on various levels of the spectrum and so they’re encouraging me to get a true diagnosis. I lack the health care access tho…

    Liked by 1 person

    1. My healthcare doesn’t help MUCH because a LOT of the doctors are out of network and my out of network deductible is through the roof. My husband had the hardest time believing – because he sees the good and the gifts in me so strongly. He is my biggest fan.

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