hands-purple-child-holding

Why I’ll Always be Anonymously Autistic – The Unicorn Theory

Sometimes Aspies are caught off by my blog’s title. People ask me if I am Anonymously Autistic because I am ashamed of my Autism. My long time readers know me better than than that, but some of you are new. Welcome, please allow me to explain.

I started this blog anonymously because I love my privacy, not out of a shame for my Autism.

In fact, I quickly realized that I needed to share so others could see Autism from my perspective. Some days suck, but over all I love my life and would never want to be “normal” or Neurotypical.

I generally keep to myself with personal things. Speaking about matters of the heart has never been easy for me, so I don’t. This blog became a place where I do something completely out of character – share my feelings.

For me, it is easier if the people around me don’t know my feelings or else they may ask me about them and I would be forced into unwanted conversations. I enjoy talking about my passions and other matters, but my feelings and emotions have always been sacred to me in a way.

The more I write the more confident I get in speaking about Autism. Most of my problems come from when ever I share. I hide my emotions and keep things to myself. People don’t get to know me and don’t see my Autism.

Always calm and composed (because I always run away and hide before I fall apart). It looks like I’ve got it in control. Nobody ever sees me struggle.

People say these things in the nicest ways, they have NO idea how much their words hurt or how wrong they are.

“You’re not really Autistic right? It’s a misdiagnosis?”

“Asperger’s? You are too nice you definitely don’t have that! I can’t believe it.”

“Are you sure? Have you gotten a second opinion?”

“You are NOT Autistic.”

“There is nothing wrong with you. I think you are great!”

“We’re all a little different.”

Or when you ask for accommodations for sensory troubles.

“Everyone likes natural light. Its not fair to give you special treatment.”

“I know you said you wanted to meet in a quiet space, but I think you will love this bar.”

“It’s not that bad. Look everyone else is having fun.”

“I think you can do it, if you try harder.”

“Don’t make excuses.”

Worse is when they say nothing at all. When you say something they give you a look. Doubt. I recognize it now that I’ve seen it over and over again.

The face people make when they think you are telling them a decelerate lie.  It is a look that stops me cold in my tracks and is the reason I’ve stopped mentioning my Autism in face to face conversations laity.

I have a theory that if people saw a unicorn in a field of horses they would mistake it for a white horse, because they do not believe unicorns exist.

I am feeling a bit like that unicorn. People can’t see me because they don’t know that Aspies like me are out there.

A unicorn, something that challenges their beliefs. I am right in their faces and they can’t even see me.

 

#InvisibleAutism #ActuallyAutistic #AnonymouslyAutistic #SheCantBeAutistic

Advertisements

56 thoughts on “Why I’ll Always be Anonymously Autistic – The Unicorn Theory”

  1. As an NT who is married to a Unicorn, sorry, I mean “Aspie” (her title of choice) I have to say that I was quite ignorant of Aspergers before we met. I am fully aware of autism and have had lots of “awareness” training in my work. This does not make me an expert though of course partly because of the fact that all of the training was designed and delivered by NT’s and, more often than not, FOR NT’s rather than for those who are autistic. I sometimes wonder if being an NT is more of a hindrance and in some ways prevents us from evolving. (A conversation for another time perhaps). That aside, it always disappoints me or upsets me when I hear that anyone who does not conform to the ‘norm’ expected by NT’s is often ignored by people and society as a whole. I for one would not change my wife for the world.
    NED

    Liked by 3 people

    1. I agree! That ending was unbelievably gripping and relate-able! I loved the unicorn theory.

      Though I don’t have Autism and in no way would I ever try and pretend to know what it’s like, I do share the unicorn theory as well in certain aspects of my life. Until people willingly open their hearts and minds to the facts, sadly I think they’ll remain blind. What’s even sadder is when it comes from people close to you, whom you hope would at least ‘try’ to see things from your perspective in order to help you feel more comfortable about who you’re. I’m sorry if you get people who accuse you for hiding, I personally think what you’re doing is admirable, so please don’t stop! We need people like you to show the truth, the other side, in order for others to realise, there’s more to people than what they ‘think’ they know and understand. It gives hope to people who are afraid of speaking up and don’t know how to as well!

      Liked by 2 people

  2. I completely understand. The majority of reactions I’ve received when I tell someone, face to face, that I’m autistic — even when I’m more specific and tell them I’m an aspie — have ranged from doubt and confusion to full denial. In fact, my last therapist simply decided, during our second visit, that I am not. I suppose he was trying to be assuring when he waved his hand and said, “There. I’ve cured you.” I have no idea how a third visit might have gone.

    Some of this confusion, I believe, comes from the fact that I wasn’t diagnosed until late in my life. I put decades of effort into “passing” before I even knew what I was trying to hide. I worked very hard at presenting myself as intelligent and funny enough to excuse some level of “eccentricity”, and found many ways to avoid situations that most aggravated my abilities to cope. It cost me much in options and income, but it disguised my difficulties fairly well from those who didn’t know what to look for.

    Since my diagnosis, and my realization that my problems with various environments and people weren’t from my personal failure as a human, I have decided not to purposely hide from most people I have to interact with. Instead, I tend to get it out in the open fairly early. Generally speaking, I’m stubbornly holding on to an expectation that professionals in the education and health fields should be held to higher standards. So, I expect to be able to ask for whatever accommodations I need and have them respected. Admittedly, this exposes a fairly uneven range of understanding, but I believe it’s something I should be able to expect, and I refuse to make it easier on them just to make it easier for me. Also, whatever additional understanding I can foster during these interactions may make life better for another autistic in the future.

    Still, I’m aware that this is my personal decision, and I do not impose my perspective on other autistics. Until the world understands that the accommodations we need are no different than those that decent people are expected to accord to any person — like maps and street names for visitors, or a modicum of public restrooms, or name tags at conferences, or a drink for a thirsty person, or respectful manners — then we all need to do what we must to cope with the more inconsiderate among us.

    Liked by 4 people

  3. I need to ask your opinion and have been wanting to ask you this for a while. My son has started stimming a lot again. A fairly well known advocate for Autism recently suggested stopping the stim because ‘we want them to be productive, not lost in a stim world’. Seriously HOW would I make that happen even if I wanted to. I believe it’s as necessary as breathing for him and would melt down in a second if I tried to stop it. I see it as cruel and counter-productive. If anything I sit with him and let him know I’m here when he’s ready. IF he’s ready. Your thoughts?!? I think I know what you’ll say but I need support on this. He’s 4 1/2 and moving forward at a wonderful rate, hence the stimming I feel, to help him process all his new learning and work it all out.

    Like

    1. I know you haven’t asked me to comment on this so forgive but this hat I’ve been wearing all day is killing me so I’m going to throw it into the proverbial ring.
      I do wonder if sometimes by saying “we want them to be more productive” whether they in fact mean “We’d really not have to watch that thankyou very much. It’s different, and us NT’s don’t like different.”
      Also, how are they measuring productiveness? If someone cannot dig holes because they are confined to a wheelchair do we then right them off as being unproductive?
      I understand that, and please correct me if I’m wrong people, stimming is a coping mecahnism, a form of self comfort. I believe it’s also considered that everybody (or most people) stim in one way or another. This may be by tapping a pencil, fidgeting toes or even perhaps repeating a song in your head. These are all coping mechanisms and often help us deal with stressful situations. I think that if I was to prevent my son from stimming (he’s autistic by the way) then it would be removing one of the coping mechanisms that I, as an NT, may not need or realise I’m using.
      Okay so my waffle chip is beginning to overheat so I’ll leave it there. However, I’m sure Anonymously Autistic is better suited at answering your questions but once I have something in my head I have to write it down or say it etc so forgive me replying. Cheers, Ned.

      Liked by 2 people

    2. For me, and everyone is different, stimming is helpful and calming. If he is stimming more there may be some extra stress happening or som other stimulus may be too much. Try calming lighting make everything soothing and relaxing. If he still needs to stim I think you let him if you can’t explain to him when it’s not appropriate yet since he’s is so young still. Remember sometimes we stim to think or block out something unpleasant. Eliminating a trigger first then if you can’t find one- it sounds like you are already on track.

      Liked by 1 person

      1. He’s started kindy last few weeks , I knew that could be the cause, his stim is not harmful, he’s just been more disengaged. He also uses it to think, as you say. He’s putting together some massive language concepts at the moment as he is non verbal. I can see him gathering books on the same topics and then the stim is repeating the language from a video on the topic. It’s very clever what he’s doing, and he’s obviously growing. There are slightly more depands on him now than there was, I think he’s adjusting but also thinking.

        Liked by 2 people

          1. He scripts heaps and is putting so much concentration on his language MODELLING videos, and repeating and scripting over and over. I think he’s having a bit of a breakthrough. Normally when I see the stimming go up (and a lot of cranky, get-away-from-me behaviour) we usually get a break through or a growth spurt. I need to just him and trust the process. I had so much love and interaction with him a few weeks back and he was with us so much, full eye contact… I should know the cycle, I haven’t lost him completely, he’s just working on other stuff I guess, and learning to cope with his new learning environment

            Liked by 2 people

          1. Thank you. That means a lot. He’s stimming a lot around doing poos. He’s not toilet trained yet as relocating for him when he’s already uncomfortable with the sensation obviously is hard. I know he’ll get there, I just have to be patient and understanding. It’ll take as long as it takes. He’s not verbal yet which also adds a challenge as he can’t tell me exactly what’s stressing him about it. He’s not obviously stressed when pooing but stimms before and after so something bothers him about it.

            Liked by 1 person

    3. I definitely agree with folks who are saying not to stop the stimming. I’m having to re-learn stimming at age 53, and am finally starting to feel “in” my body again, I can’t even remember when I felt “in” it. These issues were mistaken for PTSD issues for a long time; perhaps some were, but definitely not all. My muscles, even skeletal ones, have had so much tension in them for so long that I got arthritis and was losing range of motion; the muscles have knots everywhere.

      I’m fortunate that I learned that exercise bleeds off some of that extra energy, or stress chemicals, or whatever it is, and that I have been able mentally and physically to stick to regular exercise. My body still works pretty well. My brother’s not well at all, I believe he’s autistic too but never exercised and is quite physically disabled now.

      Autism has well-documented motor and cerebellum neuron-level differences in wiring. While the researchers haven’t really put it all together with how stimming helps us, please accept that it does.

      These folks saying to stop stimming have absolutely no long-term studies on the results of it!

      I personally believe that it likely is very important for children to learn how to function in the world as best they can while staying healthy. They will have access to so much more, potentially. However a balance is needed that fits the person, not NORMALITY at all costs.

      Stimming calms me back to an ok state from a not-ok state that’s hard to describe but has fight-or-flight aspects. I’s not like doing drugs for fun in college or something. Those are very different things and I don’t think some professionals, like the one you reference, understand or accept that one autistics are doing the former.

      Liked by 3 people

      1. The las actual science I remember seeing – and it’s been a while, so I’m not going to call it gospel or current – said that there is a synapse pruning/cleaning process that takes place in the brain during fetal development through early adolescence. Apparently, autistics don’t prune well, and have excess synapses and old broken bits laying around. So it’s conceivable to me that stimming might have to do with tracking/reinforcing/reestablishing sensory pathways through the noise of too many optional connections and possible shorts. Just my pet theory.

        Here’s an article that isn’t the actual study I read but gives a fairly sensible overview. https://goo.gl/QqEAyL

        I don’t have time right now to chat about the other point in this article – that they think they might be able to make a “cure” that can be given after diagnosis to rev up the pruning process – but it actually complicates the old cure discussions. Who is the “correct” person? The person who might have been if pruning had happened at the usual time? The autistic person, extra synapses and all? Or the person resulting from taking the drug as a child, since I don’t think anyone is claiming that the drug somehow knows exactly which neurons would have been pruned the usual way, meaning that the drug-pruned person could have a significantly different brain than the person “who was meant to be.”

        Have fun pondering that 😉 I have a deadline I’m avoiding.

        Anyway, it seems possible that stimming may perform a tuning or alignment function. If the particular stim isn’t causing some sort of damage otherwise, it may be a bad idea to mess with it. If it IS causing other damage, then it seems reasonable and wise to find some more acceptable substitutes, since I’m sure the brain will keep trying to find ways to self-medicate.

        As Greenleaf points out, regular rigorous exercise can often help. A session of full-body exercise may even provide an alternative method of stimming, though there’s no way to guess ahead of time if it would include the particular stimulation he needs. Still, it’s certainly a great habit to cultivate in an autistic who might otherwise develop rather sedentary and permanent habits.

        Liked by 2 people

    4. Stimming is, of course, an attempt to manage the nervous system. When there is too much sensation, or an unpleasant kind of sensation, stimming can regulate or distract. Sometimes the stimming can be damaging or inappropriate. If so, then it’s worthwhile letting him know what the problem is, if he is able to understand, and its also worthwhile to try to find an alternate form of effective stim. Of course, if the source of the overwhelming sensation – internal or external – can be identified and resolved, that’s the obvious place to start.

      In my own case, i would stim by picking at the skin on my fingers. I would work through several layers of skin until I got down to a raw open sore. Since I have ten fingers, I could keep this up for several days. Eventually, I substituted polished rocks, ball bearings worry beads, worry stones, small mechanical toys, doodling, musical instruments, legos, etc. — whatever allowed me to keep sending stimulation in less self-destructive ways. I never really had the option of NOT stimming at all. If I needed it, I needed it. Believe me, I was not tearing the skin off my fingers because I enjoyed it.

      I don’t know what kind of stimming your son is using, but I doubt he is escaping into a “stim world.” If he was actually able to become “lost” in any sort of other “world,” he’d probably not be stimming. More likely, the “advocate” is reacting to the concentration and disengagement it sometimes takes to manage overwhelming input. Non-autistic people often get confused by their outside perspective of the sensory coping of autistics.

      This is the same confusion that made them misunderstand autistic eye contact. I often had to explain it to teachers when my kid (also autistic) was in school. They usually interpreted her looking-away as in attention or being “someplace else.” Finally I told them: on the contrary, my kid was looking away from your eyes to avoid the overwhelming input that comes from looking into someone’s eyes. They had to look away so they COULD pay attention, instead, to what you were saying.

      I’m surprised to hear an “advocate” say that. At any rate, the best approach is to recognize that stimming comes from needing to manage some input. If the stimming is damaging or problematic for your son, then the source or a substitute must be found. If it’s only a problem for someone else, then your approach is exactly right: be sure he knows where to find you when he needs you. Then give him time and space to sort it out.

      Liked by 2 people

    5. My son is 3 with Autism. He does ABA and right now we don’t stop any stims. I was told if there is no replacement activity for the stim then don’t stop it. He does a rigid rocking motion for one of his stims. It usually happens when something doesn’t feel right to him, whether that be his stomach is hurting or he is overwhelmed.

      Liked by 2 people

  4. The outright refusal to accept my symptoms and punish me physically and emotionally is what I got for disclosing and trusting the medical profession early on, even before I had a diagnosis. I wonder why disbelief and hate are the first 2 emotions that come from anyone outside of autism? I am not some freak who will wind up dead or in jail. I am not a lazy person who sponges off her family. I have a neurological disorder (I prefer disorder as autism really does disrupt my life). I love your theory.

    Liked by 3 people

  5. Isn’t it a shame people can’t accept the fact that we reserve the right to be who we are? You telling us who you are AND how you feel. If you have a problem you want thoughts about you can ask. Otherwise you can just be you. So many people spend so much time trying not to the different. In our differences is our richness. Thank you.

    Liked by 2 people

  6. I love reading your post and I have learned a lot about autism. I must admit it’s hard to understand some things (sensory sensitivity for example), because I’ve never experienced it. Reading about it from your perspective helps me to gain a better understanding.

    Liked by 1 person

  7. I so much appreciate your posting. I get the doubtful looks too. I get more positive responses from people in my outer than inner circle. Family members don’t mention the word “autism” in my presence. No one asks any questions about it. It is as if I had just told them I had an ingrown toe nail.

    The special education teachers/aides whose classes I sub in are very supportive. I would expect that since it is their job to care for those who are autistic as well as other challenges.

    However, I did have an unusual reaction the other day when I was subbing for a P.E. aide in the gym. I had subbed in her autism unit a few times and asked her how she and the class was doing. Then, I told her about my diagnosis of “asperger’s”. She gave me a look as if I had told her I had cancer with nine months to live. She said, “I’m so sorry to hear that.”

    I was taken aback by her reaction. I assured her I was okay with the diagnosis. Then, she asked, “What is it?” I hope my reaction of disbelief that she didn’t know did not show on my face. She works in an autism unit; I thought she would know what asperger’s is. Then, I explained it was autism and that’s when the light bulb went off. I was relieved she was familiar with the word “autism”.

    Perhaps she was just trying to make me feel better when she said, “It is easily controlled now.” EASILY CONTROLLED??? That’s news to me!

    If I knew when I was going to have my next meltdown, I would invite her to it.

    Liked by 2 people

  8. If I had a penny for every time someone said “you don’t look autistic”, I would be a very rich woman. And the dreaded “we’re all a little different/autistic”. No, honey, until you feel this acute pain in your soul that you are a complete alien on this planet because you don’t innately know things about others, you aren’t a little different. Until you feel the need to hide what you are because the glitter will literally drown others in its fabulousness and become non-fabulous in a heart beat because it killed the prom king/prom queen/head cheerleader/sports star, etc. No, you just aren’t. Blah.

    Liked by 1 person

    1. “No, honey, until you feel this acute pain in your soul that you are a complete alien on this planet because you don’t innately know things about others, you aren’t a little different. Until you feel the need to hide what you are because the glitter will literally drown others in its fabulousness” YES! I LOVE THIS!

      Liked by 1 person

    1. We are all different but we tend to get pumped up by active places – and if we need to be still / listen / eat this causes anxiety and is NOT a good thing. Why you may notice MORE stimming in a more active / stressful environment.

      Like

  9. “I have a theory that if people saw a unicorn in a field of horses they would mistake it for a white horse, because they do not believe unicorns exist.”

    I really hope that you will consider reading the book, “The Last Unicorn”, by Peter S. Beagle. It is a beautiful book, it’s one I read over and over as a child…. a repetitive thing I did… A copy is sitting here next to my computer at work too!

    People have become unable to recognize unicorns in this book; the Unicorn and her friends face great difficulty and pain to bring this beauty into the world again.

    … although it’s not specifically about autistics, I have found the concepts/feelings in the book to be helpful in my life, and imho it just fits so well with autism-related issues (for me at least). (Jonathan Livingston Seagull is another book that really helped me as a girl, and lots of dragon books. 🙂 )

    Liked by 2 people

  10. When I was growing up, “autism” was never a word that anyone used. I remember hearing a classmate say he had “allergies,” and felt relieved for him that there was a name for what made him different. (But I still had no idea what “allergies” were!) Maybe not sharing feelings is a way of not appearing to be too different? I also value my privacy. I think one of the worst things that someone can say is “What in the world is wrong with you?” instead of “Wow, you really help me to see things in a different way.”

    Liked by 1 person

  11. I understand, but would so love to interview you so you may be an inspiration to others, owning yourself with self-love and our true wonderful flawed selves, is the greatest gift we can give ourselves.

    Like

  12. I’m starting to see these things with my son. People comment about how he can’t be Autistic or he can’t have a feeding tube. He is starting special ed prek and they don’t even recognize his ASD because they “didn’t see it during evaluations.” The teacher assistant was almost astonished because he was talking, looking at them, wanting cuddles from me, etc. I was like what do you think Autism is? It’s a spectrum. I have been so very frustrated. He finally said sentences to his ABA tech and might be able to move up some of his goals to level 2 on the VB-MAPP. I am happy with his progress and I don’t see why it matters if he likes to give hugs or cuddle or if he doesn’t want you to touch him. I’m a mother of two special needs kids and I’m not NT either. The world is overwhelming. Our thoughts are frustrating.

    Liked by 1 person

  13. Hello. You have been following my blog for about a year. I’ve been reading yours. I don’t follow too many blogs because I want to make sure I give each the attention it deserves. I’m now following yours. My sons both have autism. When my older one comes across something that scares him, he keeps going back to it until he’s no longer afraid. I think that might be the definition of bravery: facing fears until they no longer exist.

    I can’t project my thoughts or feelings onto you; you have your own for very valid reasons. But when I read your posts, I see a very brave individual. It takes a lot of courage for me share some of the things I share about myself and my family. I can only begin to imagine how much courage it takes you to post, even though “getting it out there” serves as a catharsis, as well! Thank you for being willing to be so transparent. I admire that.

    Liked by 1 person

  14. I will try to be brief. Many of those statements are made out of ignorance and denial and being uneducated. It makes my heart sad that people think so much of themselves to know about things they truly have no knowledge of. I’m taking my son Tuesday for his ADHD screening. I have no idea what kind of things this will uncover. But I for one am praying for guidance and wisdom and an open mind. You don’t have to be openly problematic or wear your diagnosis on your sleeve for it to be real. So thank you for being you. Thank you for helping those of us who are not familiar have a better understanding. Thank you for having the heart to reach out.

    Like

  15. Yes! That look! That look that says you’re telling lies which seems similar to that that saying ” you’re crazy huh”!

    I’ve tried to be up front with people but like you I get similar responses that dismiss my credibility.

    I’ll probably remain private person surfacing .

    Liked by 1 person

  16. Hi Anna, I really love this post. Your story and the comments that people submit makes me feel relieved. I am not ashamed of my son’s autism but it’s not easy to talk about it to someone who doesn’t have any knowledge about autism. So I’d rather not talk about it unless I need to.
    Thank you for writing, I really appreciate reading your posts, keep on writing 🙂

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s