Autism is nothing to fear. Are you scared of me?

I live in the US, where the predominant feeling surrounding the autism spectrum is fear.  Parents decline to vaccinate their children because because they’re afraid they’ll wind up autistic.

Parents, I hear you, on a certain level.  Some children really do react badly to vaccines.  I’ve heard too many stories, even from people I know–reasonable people whose kids are changed in some way after getting their shots.  I can’t/won’t ignore you.

I’m telling you though, I don’t care what the doctor or psychologist told you: if your child didn’t respond well to a vaccine, it might have been a cytokine reaction, but it’s not autism.  The medical providers may have called it that, handing down a diagnosis even.  It may even *look* like autism.  There might be some overlap of outwardly visible characteristics.

But I’m a doctor, too.  And I’ve done the research.  And it’s *not* autism.

I’ll tell you a secret: autism is nothing to fear.

I’m autistic.  Aside from the occasional meltdown, I’m not a scary person.

I go to work.  I meet with people, “regular” people.  I help them.  And then I come home and hug and pet my kitties.  I hug my husband, just like you.

Are you scared of me?

I make music and write poetry.  I think up ideas.  I peruse medical journals.  I watch TV, just like you.

I take no medications.  I struggle with determining how people think.  Just like you struggle to see how people like me think.

Am I anything to be afraid of?

If we were in a grocery store and you sneezed, I’d say “bless you”.  If you were in my office and you started to cry, I’d hand you a tissue and reassure you that it’s OK to let it out.

Would it be the end of the world if your child turned out like me?

I know right from wrong, and I try hard to do right–probably harder than most, given what I observe in the world. And I do a *lot* of observing.

I drive. I don’t carry a weapon but I have the state license to do so.  My background check is golden, my record spotless, and it’ll stay that way.

Are you afraid of me?  What is it about me that you’re afraid of?

I sound pretty normal, right?  I’m of sound mind, and I come up with good, logical ideas.  I’m married and my partner and I run our own business.

Are you scared of me?

You shouldn’t be.  How would anyone on the street tell the difference between us if they didn’t know better?

I might look away while thinking of what to say sometimes.  I struggle in crowds and I reference movie quotes; I have a quirky sense of humor.  Sometimes I overshare.  Sometimes I take what is said a bit too literally.  Sometimes I get screwed because I believed that what someone told me is genuine when it actually wasn’t.

I stare at my phone screen to check my email and Facebook.  Just like you.

See?  Autism is nothing to fear.  You don’t have to be afraid of me.

Autism might only scare you because it’s an unknown variable.  It’s human nature to fear the unknown.  But it doesn’t have to be that way.  Autism doesn’t have to remain an unknown, and it won’t, if both sides make a genuine effort.

And it will indeed take an effort on both sides.  Nonautistic people can’t get inside the heads of autistic people and more than I/we can get inside yours, and that’s OK.  We can all observe each other and seek to understand.

That’s what dissipates the fear, by the way: understanding.

Let’s set our sights on that.

❀

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147 Comments

  1. in my experience people are rarely interested in understanding each other, unless everything is obvious. also explaining doesnt help, as people normally reject any explanation for anything outside their understanding.

    in short, people are happy to know what they know, and no more. theyre happy to learn something new if its unimportant and insignificant, but if it matters, theyd rather not. that, and i know too many people that are stuck up and superficial– but among the best of them, this is common.

    people are going to learn about this stuff VERY slowly. its worth trying to make progress– but im not sure its worth getting excited about. imagine people looking out at the land that would be the grand canyon someday, and getting excited about how deep its going to be. probably not in our lifetime. i dunno, every once in a while im wrong and its nice.

    Liked by 6 people

    1. Yeah, I hear you 😘. I’m sort of a jaded optimist πŸ˜‰. I know how I’d like things to go, and I know how they’re likely to end up, and those are two different scenarios lol πŸ˜‰. But hey, at least I can say I tried! πŸ’™πŸ’œ

      Liked by 3 people

    2. Well put!

      Really, doctor? Didn’t realize that. Very cool. 😎

      And this: β€œNonautistic people can’t get inside the heads of autistic people and [sic] more than I/we can get inside yours, and that’s OK.”

      Agreed. There’s a usually-unmentioned symmetry to the mind-blindness (Baron-Cohen) conceptualization of Autism β€” a kind of β€œNewton’s Law of reciprocal enbafflement”. Which is to say: My inability to get where you’re coming from implies an equal and opposite inability on your part to get where I’m coming from too. If we were the only two people in the world (given suitable ceteris paribus conditions, e.g. no fMRI scanners, etc.) we would not be able to tell which of us was more β€œmind blind”.

      I think this observation has much to offer those of us who must constantly negotiate with respect to what β€œnormal” behavior looks like. β€œWho are you to tell me that it’s weird to study Calculus at 5AM EVERY freakin day come Hell or high waterβ€”yes, even on Christmas. I think it’s weird that you DON’T!”

      πŸ˜‚ πŸ˜‚ πŸ˜‚

      Liked by 5 people

        1. Biochemistry is on my bucket list. 😊😊😊

          Also I have this idea (fantasy) that I will push my twins to become doctors right up through college, the MCATs and acceptance to medical school at which point I’ll back off and say, β€œok, I’ve done my part, now go and do whatever you really want to do in life.” I guess see all of that premed science and math as excellent prep for most any career.

          But I know it’s just a dream. They’re only six and are already running things without consulting their parents. πŸ˜†πŸ˜†πŸ˜†

          Liked by 2 people

            1. Oh wow! Fellow Britons, can any of y’all offer any names of good DX pros in the NHS system? I might turn this into a blog post, either here or on the Laina’s Collection blog, to rope in some resources πŸ˜πŸ’–

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        1. (If it’s more for personal solidification, Tania Marshall in Australia will happily do it. If it’s more for official purposes, then yeah, NHS is where it’s at. But I might be able to find some fellow British peeps who might be able to offer you names of good professionals. I’m in the US myself.) πŸ’œ

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              1. I had a child psychologist. And I went to test centres where they had me doing allsorts of things like matching coloured disks. It is a little vague. I am 45 now.

                Liked by 1 person

              2. I’ve always been sort of socially awkward and found it difficult to read people, felt uncomfortable around my peers. Then there is also the other side to me. Vivid imagination sorting smarties into colour order and eating them in an order leaving the colour I like to last. Pens and pencils in colour or in my pencil box or case. Not liking loud or sudden noises. I can not take my tablets randomly they get taken in an order, going back to check I’ve locked a door. My tobacco tin goes in my back in a certain side of a certain compartment.

                Liked by 1 person

                1. I hear you, so much 😘. I made a post reaching out to anyone from the UK who can help! I’m available to act as a go-between for anyone who wants to help but remain unnamed 😘. Just keep refreshing that new post! I’m sure something will come up in the comments section πŸ™πŸΌ. And I’ll keep an eye on my email for Contact notifications πŸ‘πŸΌβ€οΈ

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  2. I agree absolutely – people fear what they don’t understand and only by sharing and communicating will this change. There is also a problem in society, perpetuated by the media and advertising, with the idea of being perfect; everyone strives for this ideal (which does not exist) and this fuels the fear of any difference.

    Liked by 2 people

  3. Thanks for posting this!

    I know many autistic people, and the last thing they need is fear from others.

    From what I understand, everyone is on the Autism Spectrum in some form.

    The whole vaccination = autism thing is so blown out of proportion. Even if there were a causation, which there isn’t, I’d rather my child have autism than polio, diphtheria, whooping cough, or any of the horrible diseases that killed hundreds of millions before there were vaccinations.

    There’s this stigma about having a mental illness that you are some deranged person whose going to shoot up a place. Which is not the case at all. Most folks with any kind of mental illness or mental issues are more of a danger to themselves, in my experience. The mainstream media has blown things so out of proportion and fearmongered for clicks and ad revenue. It’s disgusting.

    So yeah, I ain’t afraid of you… but since I know you know how to use a firearm, I’d think twice before messing with you lol!

    Liked by 3 people

    1. I’m totally giggling with your last line! πŸ˜‚πŸ˜‰πŸ˜˜. Nah girl, I’d totally walk by your side and use it for protection as needed ❀️

      Anyway you’re so right about the stigma stuff. I get the fear of an unpleasant reaction, and there’s a scary link emerging between the big numbers of vaccines we get and a higher risk of autoimmune disease (which I have at least 2 documented, probably 3 by now), but yeah, autism and mental illness in general are not at all among my vaccine concerns, and, like you said so well, *if* there were any connection at all, which I agree with you–I highly, highly doubt there is one. Autism has been around a lot longer than vaccines, there are unvaccinated Amish autistic people, and so on πŸ˜‰πŸ’—. The mainstream media have run away with the issue so wildly πŸ’œ. Disgusting indeed πŸ˜–πŸŒΊπŸŒ·

      Liked by 2 people

      1. This is part of the reason I find mainstream media so disturbing — it takes all the shitty and horrible things that happen, plays them over and over again on the 24 hour news cycle, and people start to think there’s nothing good out there anymore. And the whole reason they play all this negative stuff over and over and over is because it makes the agencies money.

        Just making money off other’s misery.

        Gross.

        I’ve never hears of a connection between vaccines and autoimmune disease. I’ll have to do some research. We have autoimmune disease in our family, on my mom’s side. Both my grandmother and I, and one of my cousins has Hashimoto’s thyroid disease (autoimmune) and my cousin’s sister (so, a cousin as well) had lupus, but has since passed away. And my grandmother just told me that I need to start getting mammograms because her grand mother had breast cancer. Ugh. I already had to worry about colon cancer in the family.

        Isn’t medicine awesome. But hey, we have a longer life expectancy and have an unprecedented amount of knowledge, and are learning new things every day. Now we just need to get greedy assholes out of the way.

        Liked by 2 people

        1. “I find mainstream media so disturbing…” – YES! this :))

          “And the whole reason they play all this negative stuff over and over and over is because it makes the agencies money… Just making money off other’s misery.” – Amen!! Wouldn’t it be cool if they were paid based on their contribution to the world instead? If somehow we could measure the constructive action, improvements, healing from or prevention of suffering, etc etc? OMG. But that’s just me, dreaming of a utopia again πŸ˜‰ ❀

          "I’ve never hears of a connection between vaccines and autoimmune disease" – Yeah, that's a relatively new development. It's not quite solidified yet–more "in progress". I learned from a continuing ed class (required for my license, but I have a keen interest in never-ending learning in my field) πŸ˜‰ One of the lecturers/presenters (an MD who's about as much of a research nerd as I am) was talking about it. Apparently there's a PhD immunologist (or similar) (or maybe a few of them) out there who's about to turn immunology on its head. Of course, the mainstream media may or may not pick up on this. They're beholden to the conventional medical establishment, which is governed by pharmaceutical companies and their wing of the "scientific" community (which will publish flawed studies). It'll be interesting to watch! Grab popcorn πŸ˜‰ ❀

          It's amazing how widespread autoimmune disease is! I've got 2-3 AIDs – Celiac/Cerebellar Degeneration, AIED, and more than likely Hashimoto's. Dad's got Celiac and Mom has Hashimoto's, too.

          "But hey, we have a longer life expectancy and have an unprecedented amount of knowledge, and are learning new things every day. Now we just need to get greedy assholes out of the way" – Hear Hear!!!! πŸ™‚ ❀ ❀ ❀

          Liked by 1 person

          1. Dang. I’m sorry to hear your immune system is on the fritz. When I explain Hashimoto’s to folks I generally say, “my body is eating my thyroid.”

            Since becoming a large research nerd myself, I usually don’t trust much research “relayed” through news agencies. I like to read the actual case study and look at their methodologies, analyses, and sampling methods.

            But that’s just me lol. For grad school, I had to read so many case studies my brain hurt, but it taught me the valuable lesson of always checking the source. Media outlets will put whatever spin on it they want and folks eat that shit up. It’s gross.

            Also… since we’re on the subject, or at least my brain is on this tangent because we’re talking about scientific research and scientists and stuff… I’m really offput by “celebrity scientists” like Bill Nye. I have more education than he does. All he has is a BS in mech engineering and a bunch of honorary degrees (aka they just gave degrees to him for being a celebrity scientist).

            Just kind of irksome.

            Sorry, random tangent.

            Liked by 1 person

            1. Hell yes!! πŸ‘πŸΌπŸ‘πŸΌπŸ‘πŸΌ. I agree with everything you said πŸ’šπŸ’™. I’m sorry to hear your immune system is on the fritz, too πŸ’žπŸ’ž

              Yeah usually Hashimoto’s progresses to the cerebellum later, but mine did the opposite–started in the cerebellum first and is progressing to the thyroid 😳. Ugh lol. Both situations suck 🌺🌺

              Omg do you love looking through PubMed too?? Fun Fact: That’s actually what made me suspect that I’m an Aspie – I was browsing the archives of a journal called “NeuroImage” and I was seeing title after title about Asperger’s and autism and I started to think “oh my god…” “Could it be???”

              My very first TSW blog post goes into more detail, but you get the idea πŸ˜‰πŸ’–πŸ’–

              Liked by 1 person

  4. I adore you, Laina! I know something about it, and it doesn’t bother or scare me. I’ve helped people out in public places. When the parents were scared, sad or horrified at the stares, I would calm them and their child down, just by keeping calm myself, and soothing the situation.
    My son is nonverbal, though, and that makes a difference. I’m worried about him a bit. I don’t want people taking advantage of him. So far, everyone loves him. He’s easily the most famous member of our family. πŸ™‚

    Liked by 2 people

    1. I know the feeling, my friend πŸ˜˜πŸ’ž. I’m not sure how old he is, and I don’t want to pry unless you feel comfortable saying more about him, but I get the feeling he’s younger (?), and if so, a lot of things can change πŸ’“πŸ’“. I can only speak for myself, but I know that I adjusted more to the world as I grew older. At least, to a point. I’m now 40 😁, and I feel myself regressing a bit, as I get a bit more tired, especially of the world and its nonsensical ways (lol). Or maybe I’m just realizing how much energy it takes (which is a lot, for me!) to make that adjustment to the world at large. I’m not sure yet. But hell, maybe I’ll change back and go all bat-wild and shizz later on lol. Who knows? πŸ˜‰πŸ˜. I still have my meltdowns at times, which are scary as hell for all involved 😊 but they’re fewer and further between πŸ‘πŸΌ. I love the way you handle those touchy situations!! You’re the perfect helping hand πŸ–πŸΌπŸ‘ŒπŸΌ. I adore you too!! You’re an amazingly nice person πŸ’šπŸ’™πŸ’š

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      1. Thank you, Laina! What a sweet compliment! I appreciate it. 😚😊
        My son is 14 now. That’s why I worry. Close to an adult, lol… A little scary. He has few meltdowns anymore, but a few still.

        Liked by 1 person

        1. You’re welcome, Ward 😁. Wow, 14? Cool! I had tons of meltdowns then, but then again I also had a volatile father πŸ˜³πŸ˜‰. Yeah I think a lot will keep changing πŸ‘πŸΌ. And I think you’re right to be concerned. The world is often an obnoxious and unforgiving place. Does he write or communicate in any other ways? πŸ’šπŸ’™πŸ’—

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            1. Oh wow, that’s so cool! Words are all we have on the internet (well, besides emojis, which you know I use liberally lol), but in person my usual rule of thumb is, Talk Is Cheap; I Prefer a Secret Handshake πŸ˜‰πŸ’–βœ¨

              Liked by 2 people

              1. haha… that’s a good rule! My secret handshake is handing you a cup of coffee. πŸ˜‰
                He has ways of communicating nonverbally that are just as effective. For example, he manages to communicate sarcasm very well. πŸ™‚

                Liked by 1 person

                    1. Yeah! Green tea kicks black tea’s arse 😁 (omg did I type BL? If I did – damn phone! Lol. My WP app has been so unstable lately. It’s getting hung up when I try to type; it needs to be updated, but it no longer supports my old iOS and I’m too stubborn to update the iOS lol. I despise senseless change). Ok, end of life story lol πŸ˜‚. I like your tea tastes πŸ˜πŸ‘πŸΌπŸ‘πŸΌπŸ’“

                      Like

                    2. No… BL tea… Say it out loud, lol. A sandwich pun.
                      Green tea is best. There’s even green chai! I love it.

                      Like

  5. This is a Great blog post and a must share. I especially like what you said about vaccines. My brother Stephen was born in 1961 way before vaccination became a regular procedure. By the time either one of us received vaccines we were school age. I got chicken pox and measles. Stephen had measles and mumps. I remember both of us were miserable. Just ask Baby Boomers who had those diseases as children and now have or will have Shingles once we hit age 60. The chicken pox virus is still in my system so in two years when I reach age 60 I must pay for the Shingles vaccine. My Grandmother lost at least two children to polio. I would have had uncles but they died as children. The 1920s and 1930s were scary times for parents. Many children died from polio until Dr. Jonas Salk. So I’m Thankful for vaccines.

    Liked by 2 people

    1. Oh wow 😘😘. Yes, I agree with you totally πŸ’—. I had an English teacher who had had polio. She survived, but did not have the use of one of her hands πŸ’œ. I can’t imagine the 1920s and ’30s and before. Scary times indeed! 😳. People had a lot of children because the infant mortality rates were so high. I think a lot of people, especially those in our/my generation (I’m at the very tail end of Generation X) take vaccines for granted because we’ve never seen a world with these diseases and we don’t know firsthand the fear and suffering πŸ’žπŸ’ž

      Liked by 1 person

          1. Mu paternal grandparents were married in January 1919 and my Grandmother got pregnant right away. However her first son died from polio as did all the other boys except my Father. My Dad was the only son to survive. For which I’m Thankful otherwise Stephen and I wouldn’t be here today.

            Liked by 1 person

  6. Good post, and I agree with what you say. Of course the obvious reply from the fearful parent is going to be β€œbut my child is nothing like you, you are one of the lucky ones, your autism is only mild” etc. etc. I’m sure several people here have been round that particular discussion block a few times. I think it is completely understandable to worry about the future of your child, your own future etc. Worry, and even fear, about that is quite legitimate. The problem lies in making autism as such the β€œmonster” (you know, the β€œautism stole my child” rhetoric). The problem is that parents think they know exactly what the future holds for them when an autism diagnosis hits their family. It’s not true, they don’t. And that’s the ignorance we have to fight, as you and other commenters have pointed out.

    Liked by 1 person

    1. Amen, my lovely! πŸ‘πŸΌπŸ‘πŸΌπŸ‘πŸΌ. And it’s interesting how some of those people are so quick to assume that I’m not like their child. How do they know what I was like as a child? How do they know what I experience now, behind closed doors when the public mask drops? How do they know the inner struggle and strength and energy it takes just to leave my apartment? πŸ’šπŸ’™

      I agree with you πŸ‘πŸΌ – think that worry and fear are indeed legitimate; I encourage those parents to direct the fear toward its proper source: a world that is unforgiving and lacks understanding, and the sensitivity of the beautiful neurodivergent child having to deal with *that* πŸ˜˜πŸ’žπŸŒΊ

      Liked by 1 person

    1. Omg really?? That is so cool!! I love TED Talks πŸ˜πŸ‘. I will certainly hunt down this one! I think AS is over- and under-diagnosed, depending 😊. In my case, they missed me completely (!). But then there are so many cases where vaccine effects get called autism. Or other psychological/emotional/cognitive conditions–all can get lumped under autism when really it’s not. I *do* think it’s definitely over-pathologized. It’s not the problem the world at large seems to believe it is. I don’t even call it a disorder 😁. If anything, it’s a condition, a human condition and a normal variant πŸ’–πŸŒŸπŸ’–

      Liked by 2 people

      1. Yes. It’s a TED about evolution. It’s a middle discussion. I️ listen to the podcast. Wow. Reminds me of a student I️ had, it was hard to get her diagnosed. But I️ agree with you it’s definitely a new human condition that’s a normal variant.

        Liked by 1 person

    1. Hehe I did that with yours yesterday! Great minds and stuff πŸ˜‰πŸ˜. I love love love your new layout! Because Rainbows!!! 🌈🌈. No worries about needing to catch up πŸŽ†. I’m also doing that with yours; your writing positivity rules!! Mwah!! πŸ˜˜πŸ’žπŸŒΊπŸ’ž

      Liked by 1 person

  7. I think that people and parents are afraid of the head banging grunting autistic child who will never be able to care for themselves. Yes Autism is a spectrum but you are on the high end of the spectrum. Back in 1961 when my brother Stephen was born and in 1963 when he was diagnosed and in those days it was the dreaded “R” word. Fortunately our parents were determined in a time period when children like Stephen were thrown into institutions like Willowbrook. Even today if you have a child with multiple disabilities like being unable to walk, talk, see or hear that’s a whole nother deal. Now my brother Stephen is Blessed in that he is physically healthy but he will never ever be able to live on his own. Add to the fact that in New York programs and services are being cut. Staff is being laid off. Direct Care workers get paid less that $15 dollars an hour. How can they live on such low paying jobs. They can’t. Therefore they leave. Who suffers? Those who are on the neediest part of the spectrum.

    I wanted to take FMLA (Family Leave) to spend more time with my brother Stephen but the Family Leave Law does not recognized siblings as Family Members. My job said Denied.

    You are fortunate in the fact that you can hold a job, you are married, you are self sufficient. My brother Stephen is 56, will be 57 on May 3rd. I will be 59 in February and now have my own disabilities, ie a stroke, vision loss in my left eye, arthritis, etc..,

    Now What happens were I’m no longer able to be an advocate for Stephen. When I cannot be an Activist? What happens when I die? The fear is valid for a bleak future that lower functioning individuals without family members face. Who is going to change these laws, help struggling siblings like myself and who will force the elected officials to restore funding?

    Liked by 1 person

  8. I agree with you. Autism isn’t anything to fear. I grew up in the 60’s when no one was talking about it. I had extreme social anxiety. I have always been artistic but I wonder if I might have been labeled autistic (pun intended) if I had been born thirty years later when the term came into vogue. When I was tested at the hospital because apparently I didn’t read well out loud, the conclusion was “She’s afraid of school.” Well, who isn’t afraid of something?

    Liked by 1 person

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