Off the Spectrum – How Autistic Are you?

YOU ARE ASKING THE WRONG QUESTION!!!

I HATE talking to people who do not know me about my Autism (face to face). I get comments like, well you must be one of those Higher Functioning Autistic’s – since you have a house and a good job. Your life looks great. There is nothing wrong with you.

In general I am a pretty happy and positive person. I’ve worked hard to learn to love myself as I am and have made effort to eliminate all negativity and bad people from my life. I smile all the time, even if I am not feeling well or having a bad day.

Technically my smile is more of a grin or smirk – no teeth. If I force teeth it’slike that scene from the movie Terminator where Arnold Schwarzenegger tried to learn how to smile. I wish I was exaggerating. I can smile with teeth if I am genuinely happy about something,  but this is one thing that I can not fake.

What they don’t see is my suffering. They don’t know that sometimes I am panicking on the inside or going through sensory overload right in front of them. How could they?

Growing up undiagnosed, I learned to hide these things years ago. Nobody sees me freaking out, knows when I am having stomach issues, or my head is pounding from the florescent lighting of the office I work in two to three days a week.

I don’t complain. I smile, push forward pull up my big girl panties and do what I have to do to make sure that I am able to provide the best possible life for myself. I have a good job because I work hard.

My mother allowed me to start working at the age of twelve. I started out with simple jobs like folding towels. She told me to always stay busy, find something to do. If I am on the clock I need to find work to do. So I did.

I put my heart and soul into everything I do THAT is why I have a nice home and a good job NOT because I am a “high functioning” Autistic. Honestly, I am not a fan of these high and low functioning labels.

People say I am high functioning because I have well developed coping mechanisms which basically means I keep all my suffering to myself to make Neurotypical people feel comfortable. Because I can pass for “normal” blend in and be one of “them” I must be high functioning. How offensive.

Please do not ask an Autistic person (or parent) how Autistic they (or their child) are (is).

This would be the number one on a list of things not to say to an Autistic person.

Thank you!

I found the following website while networking with other Aspies online and was VERY pleased with the following info-graphic. Please see the full thing on the Living Amongst Humans blog.  I really enjoyed it.

Full info-graphic here.

asp spec

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64 thoughts on “Off the Spectrum – How Autistic Are you?”

  1. I’m high functioning too. I don’t really mind people using that term. For me it helps because if I just say that I have autism, I worry that they assume I can’t manage as an adult or hold down a job or look after my son. I do have difficulty holding on to employment sometimes but that was mostly before I was diagnosed. Now I am much more aware of my potential for misunderstanding more complex communication and I have routines for un-ravelling those issues. I do get what you mean though. Sometimes if you say you’re high functioning people seem to assume that everything is fine when actually it’s often a massive struggle from day to day. Great post! Good on you!

    Liked by 2 people

    1. Thank you so much. The term high functioning actually did not bother me at first but it also implies that out Aspie brothers and sisters who are labeled as “mid to lower functioning” (even worse terms) somehow lesser. For example, a brilliant Autistic person who is non-verbal with lots of sensory processing trouble may be labeled as “low functioning” due to the inability to blend in. Its sad, but I think eventually we need to migrate away from this type of language. Most of us have very spiky mental profiles. I ace things or I fail miserably at them, there is little in between. It is amazing how my higher functioning areas contrast with my lower functioning areas. I am very good at coping, so people have no idea how much I struggle.

      Liked by 3 people

      1. I know exactly what you mean about a spikey mental profile. I am just like that too. I am really good at some things – I could give a lecture on the Theory of Relativity but I find it really difficult to manage at the church coffee morning.

        Liked by 1 person

  2. Personally, I believe functioning fluctuates. I really did like this article. Nobody has to justify if they’re “autistic” enough. That’s like saying if a person is “black” enough to pass certain stereotypical behavior.

    Liked by 2 people

    1. Thank you, I agree. The problem is, when asking for help… or trying to get a formal diagnosis – many women (and men) with great coping skills have a hard time getting what they need (from employers, healthcare providers, etc.) because they do not come off as Autistic enough.

      We cope too well. Its a bit ironic, isn’t it? 😉

      Liked by 1 person

  3. Your post calls attention to a topic I find relevant. I have an IQ of 110. People who I have disclosed my autism to tell me they couldn’t even hold a conversation with the autistic people they know. High functioning is a term that misleadingly assumes total self-sufficiency along with an IQ of 100 or above. Low functioning assumes an IQ of usually 70 or below and non-verbal. So where does this leave me or someone like me? Moderately functioning? There are way too many gray areas. Social, sensory, co-morbids. Relating to the concrete, I say my executive functioning is poor. My social skills are improving, slightly, but still poor. I can’t independently support myself due to low sensory threshold. I’m not sure what a better term would be, but high/low-functioning is too extreme and vague.

    Liked by 1 person

  4. This post really hit home.

    “I smile all the time, even if I am not feeling well or having a bad day.
    What they don’t see is my suffering. They don’t know that sometimes I am panicking on the inside or going through sensory overload right in front of them. How could they?
    Growing up undiagnosed, I learned to hide these things years ago. Nobody sees me freaking out, knows when I am having stomach issues, or my head is pounding…”

    I couldn’t have written it better myself.
    Although, I don’t literally smile much. I’m often told to smile, or asked if I’m okay. Perhaps figuratively, since I don’t share my personal concerns and anxiety. I save those for my psychologist.
    I’m viewed as very optimistic, kind, and calm. But it’s because I’m constantly thinking about how I should be reacting during any given situation, I often find myself silent.

    But back to your post…
    I really appreciate you putting this into words. Not having been diagnosed until my early 30’s, I also have learned to cope on my own. I yearn to find others who understand what I’ve been going through all these decades.
    So, Thank You, again, and again, and again

    Liked by 1 person

    1. Thank you so much! Your words above really strike home for me too. I started to force the smile back when I was a teenager BECAUSE I wanted people to leave me alone and STOP asking me if I was alright. People harass you more when they think you are feeling blue. Truly appreciate you sharing your thoughts. ♡

      Liked by 1 person

      1. You guys can smile. I’m stuck with RBF. Resting b***h face. I know NT’s have it & I do too. My mom said I wasn’t very smiley as an infant. I force myself to smile by visualizing a special interest when someone takes my picture. I couldn’t tolerate the flash of a camera until I was 7. That’s another thing that throws people. Some of my sensory problems lessened and others intensified in my teen years. I’d love to hear from others on the spectrum who experienced intensifying sensory symptoms–and alleviating ones in their teens. I didn’t have any treatment back in the early 1990’s. It just happened as my brain grew.

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        1. LOL about your photo techniques! That is brilliant. I can’t really smile in a photo mot with teeth. I look like the Terminator when I try. Haha. I actually don’t smile its more of a grin / face that I learned will make people NOT ask me if I am ok since my resting face was for some reason bothering to people. ALSO – I am currently going through my symptoms intensifying!!! My sensory things were not a bother as much through puberty, however I had more explosive rage than ever with PMS and everything. . . Now, that I am closing in on 30 the rage has become more of a implosion. It’s like I’ve switched from fight to flight mode. . . My stomach problems were completely gone in my teen years but are currently back with a vengeance. I am stuck in bed about 3 days a month. Now I can see that it seems to be related to or cause sensory overload, which I get any time I wear myself out too much (at LEAST once a week). The main thing ihs NOW I’ve somehow found a way to pretend everything is ok. I am getting by and hoping that things don’t get any worse. I am doing everything in my power to be kind and gentle with myself, without letting my job suffer. Luckily my work hours are somewhat flexible as long as I get them in and I work from home a lot. Interesting how things change.

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    2. When Anna described a smile on the outside while suffering inside, I thought about former World Chess Champion, Boris Spassky. Spassky admitted that he was always a bundle of nerves while he played chess, but outwardly he always had a calm face. Another former chess champ (the one who defeated Spassky for the championship), Bobby Fischer, would rock back and forth while he played. In fact, commentators would always mention quirks of Bobby Fischer; I identified with most of them.

      You always hear about autism in the STEM professions, but I think chess players are another hotbed of autism. Most people think of chess players as nerdy, socially awkward, able to hyper focus for hours on something most people find terribly boring (a chess position), etc. Anna will hate this; if you are autistic and play chess then you have HFA.

      Liked by 1 person

      1. LOL – “Anna will hate this”. 😉 You are probably correct on that – but we will assume for a margin of error. I’ve been reading on Tesla and have found my long departed soul-mate. Even his mystery illness match most of my own. I am amazed and shock.

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        1. Einstein, Tesla, Newton, etc. All of these famous scientists have been armchair diagnosed as autistic. The only famous scientist who is also famous for not being autistic was John von Neumann. Anecdotes about von Neumann always occur at cocktail parties; supposedly this excludes him from having been autistic. However, my favorite story about von Neumann showed he didn’t have a typical thought process. von Neumann was at a cocktail party, and somebody approached him with a question:

          Q. I have a math problem I’d like you to solve. Two trains are approaching each other from either end of a railroad track that is 100 miles long. Each train is traveling at a constant 50 MPH. At time 0, the point in time the two trains start moving, a fly traveling at 100 MPH, leaves one of the trains and flies to the other train. The fly then flies back at 100 MPH to the original train. The fly keeps doing this until the two trains crash. If you consider the distances the fly travels in its original direction as positive, and the reverse direction as negative, and you add up all these distances, what is the net distance the fly travels?

          von Neumann (answers immediately without a pause). 50 miles. You seem disappointed that I was able to solve your problem; why is that?

          Q. I’m not sad that you could solve the problem, it’s just that I heard that mathematicians try to solve this as the sum of an infinite series.

          von Neumann. …but that was how i solved it.

          Liked by 1 person

  5. Thank you for using and referencing my infographic and site at Living Amongst Humans. I took the liberty of adding a comment there about this blog post of yours.

    I mentioned in the comment that it took me 55 years to learn how to smile effectively for a photograph. There are some tricks, all fakery of course. I recently taught the technique to my brother. He’s still practicing.

    Liked by 2 people

    1. Hi Jim! It is GREAT hearing from you! Thank you for creating the info-graphic and sharing the message. Love your site and TRULY appreciate you linking back to me! Its funny, once you learn you are Autistic all of the “strange” things about you suddenly become normal within our tribe (talking about the smiling problem). 😉

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  6. I thought high functioning meant autistic without intellectual impairment. I know the medical term has nothing to do with how the individual functions, it is solely medically used for brain functioning. High functioning Autistic people are more prone to anxiety and other related conditions.

    Liked by 1 person

    1. So here is the thing – it is hard to just say “high or low”. I am high functioning / almost completely normal when I am well rested and well prepared on a good sensory day. On a day when my SPD is more severe than I am a crying barely verbal mess vomiting on my bathroom floor hiding under the blankets with ear plugs and my eyes squeezed tight. My functioning varies day to day. In my early 20’s I had a period where (before I found out I was an Aspie) my SPD was pretty much under control (because I was not pushing myself in life). I thought I was cured and invincible… back then I would have been considered more of an “Asperger” where as in recent years, my SPD is causing overload at least 2-5 times per month. When it happens I can’t do anything.

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  7. Loved. I grew up not knowing or even understanding why I was unlike the other kids my age. I was the one the other students called ‘strange’ behind my back. I was much more content siting in my room playing imaginary, or, later in my teens listening to music for hours on end. Well written and so true.

    Liked by 1 person

    1. Thank you SO much for sharing your story! As an Autistic woman – since we are “invisible” to even many mental health professionals – it is EXTREMELY important that we share. The world needs to know that we are here – so our girls don’t have to grow up feeling like we did – strange and made fun of.

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  8. Thank you so much for visiting my blog! I am very happy to have found yours- this is such an important topic and touches on so much more, even, than the issues of autism. It’s also about how we decide to judge and ignore each other and how people learn to give up on life. When you’re constantly reminded that you’re “low functioning” or don’t fit in or whatever it is, it is hard to keep in balance and keep going. When you are an individual whom others have challenges “getting”, same thing. So instead of saying, wow! good for you to navigate these things and live the best life you can…..it can be very problematic. I really like your writing and approach, and Truth!

    Liked by 1 person

  9. Thank you so much for reading and liking my post “sharing” because it lead me back to your blog, which I’m just starting to devour! I really appreciate your perspective on the autism spectrum. My son, who I wrote about in the post “moving on” is undiagnosed, but we have been observing autistic like behavior since he was very young.

    I really want to get him diagnosed, not to put him in his place but just so we can get some help and understanding. So that I can share the pain and distress sometimes without people saying “Your son’s not autistic!” or “But he seems so ‘normal'” or “I’ve worked with many children on the spectrum and I would have never picked him as being on the spectrum”. Where on earth can the conversation go from here?

    You talk about the stress and difficulties you hide, and that’s HARD! You sound similar to my son, he works really hard at school, he’s a stickler for rules so that helps right? But at the sane time puts a huge amount of stress in him – why is it a rule you need to keep your voice to zero in the class at certain times but the kids don’t? Not only does the noise really bother him, but the confusion eats at him.
    Enough about us, I just wanted to say ” thank you” and if I can find the Follow button I will be following you with interest.

    Liked by 1 person

    1. Oh my goodness – thank you SO much for sharing your son’s story. He sounds a lot like an Aspie to me – but I am NOT a doctor. Tony Atwood’s book the Complete Guide to Asperger’s is AMAZING if you want some additional insight into your son. Reading that book for me was like untangling my life story. I really hope you find my blog helpful because I really do want to help people.

      Looking forward to reading more about you and your son. 🙂

      Also – the follow button is green about half way down in the left menu bar. 😉

      Liked by 1 person

  10. It was good to find this, I’ve been told a number of times that I am on the spectrum (the popular term and the only one I really thought of before this) and I’m trying to organise being assessed so I have a better idea of my situation.

    Liked by 1 person

      1. Thanks, I’m seeing a lot of myself in a number of the posts and comments I’ve looked at, and having just taken one of the tests you’ve linked it’s looking more and more likely that I am definitely on the spectrum.

        Liked by 1 person

  11. Depression runs in both sides of my family. It, too, is a hidden pain, even for those of us who are relatively unscathed. I consider myself fortunate that those who suffered most found coping mechanisms and passed them on to others (keeping busy is first on my list, too). My impression is the more people write about their search for balance and strength, the more we all benefit. Good on you, mate!

    Liked by 1 person

  12. Thank you for “liking” my post, I’m glad it had some meaning for you. I don’t know much about Autism, other than a movie I once saw – you know the one, where the cop protected the boy who was autistic and obsessive-compulsive with puzzles (and I don’t know how accurate it was). But I think all of us are, to one degree or another, beset with our own issues; I withdraw into myself when in close contact with others, I am compulsive and repeatedly redo certain things to ensure I did them, I’m famous for occasionally blurting out inappropriate things at inopportune moments. Do I have Autism? Am I Obsessive/Compulsive? Do I have Aspergers? Don’t know. What’s more, I don’t care. You and I – and everyone else – are different but the same, only by degree. Nothing to be ashamed about, it’s who we are to those who care that matters – let the rest of the world just deal with it.

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  13. Hi- just came across your website, and this post hits so close to home. My son asked me a few days ago why I never smile, which both surprised me and hurt my feelings a bit. My sense of humor, contrary to the inaccurate perception the public seems to have about people with ASD not having the capacity for humor, has always been my go-to means of covering up social anxiety, so I was sad it’s obvious to him that I don’t necessarily take pleasure in the act of saying something others find amusing. His assessment was accurate: I don’t really laugh at anything funny I may say (which admittedly probably isn’t as often as I’d hope) because the point is to disarm other people, as opposed to entertaining myself. In fairness to my wit, though, I think it’s aggravated by the RBF I’ve had since I was born (my perma-scowl as an infant is famous among my family to this day!), and while I learned to mask most of the most obvious ‘tells,’ unfortunately it seems this regrettable condition will accompany me to my grave.

    I also very much relate to the idea of ‘not seeming Aspergery-enough’ for people to take me seriously in the few instances I bother mentioning it to anyone… This includes my parents, even though my mother was the one who noticed it in the first place– but when she took me to the pediatrician after growing seriously concerned about my lack of eye contact and complete apathy toward being held (versus hanging out in my crib kicking in perfect time to music,) in contrast to my three siblings’ ‘normal’ desire to cuddle and be carried around (as I suppose babies are often wont to do), he just told her to be happy that I was ‘low maintenance’ and was meeting cognitive milestones. It’s understandable, though; I’m ancient, so my doctor at the time would most likely have thought of ASD as solely a ‘male disease’ — if indeed he had even heard of it at all back then.

    It’s such a weird catch-22… Like you, it sounds like, I’m weird but not ‘weird enough’ for those people who think they’re ASD experts after having watched Rain Man 20 years ago.

    Like

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