Losing Sleep, Autism and Strange Noises in New York City

I’m operating on about three hours of sleep.  The piece I rewrote about Simon Baron-Cohen and The Theory Of Mind for the Huffington Post was published yesterday evening.  I knew I’d get some opposing views.  I’m used to that.  I understand that by putting my thoughts out there,  people will and do disagree.  So irritating when people disagree with me.  Eye roll, sharp intake of breath.

When I began writing at the Huffington Post I submitted a piece about Emma and her interesting use of language.  It was not a scholarly piece, (none of my pieces are, it’s not what I write)  just some observations and thoughts I had.  Once the piece was published I received a couple of scathing comments, many of which were marked as “abusive” and were removed, but one that remains, was from a retired speech pathologist who wrote,  “A jewelry designer (author of the article) who has bizarre ideas about language development should be countered by an expert opinion.”   I imagined as she wrote that comment she was looking grim and making tsking sounds.  I felt as though I were back in first grade being scolded for not paying attention.

Another piece I submitted about Emma’s painting, a number of people made derogatory comments, which were removed.  One of those comments was,  (I’m paraphrasing here) Oh great!  Stupid references to Dr. Seuss, Autism and painting all in one sentence.  How is this news?  

News?  I was supposed to write a journalistic, investigative piece?  Shit!  Where was I when that memo got sent?   I thought I was writing a piece about the joy I felt watching my daughter paint.

It’s anxiety causing to get such contemptuous responses, but over the years I’ve developed a “thicker skin” though I’m so literal-minded that phrase strikes me as really creepy.  Still, in this last piece it is I who am attacking someone else.  And while I’m sure Simon Baron-Cohen wouldn’t lose any sleep were he made aware of my rant about his questionable test and the even more questionable conclusions he’s drawn, it’s not in my nature to attack others.  I don’t feel comfortable doing it.  Against my better judgement I submitted the piece anyway because I believe strongly in its message.

As I reiterated in a comment I made to another person’s response –  SBC  is presenting himself as an “expert” on autism. It isn’t as though he was the parent of an Autistic child, had a blog and wrote the occasional piece for the Huffington Post, while making inflammatory statements, which everyone could read, laugh, argue with and forget. He has made a career for himself, based on his academic achievements. His theories should and must be held to a higher standard. His words and ideas have tremendous power. It is irresponsible to be in such a position of power while basing ideas and theories on faulty tests with no consideration of the implications. I, too, could cite many examples of my daughter’s actions, which could then be used to (erroneously) support SBC’s various theories. That doesn’t make his theory correct, it brings into question my thinking.  I urge you to read Dr. Henry Markram’s alternate theory – http://www.wrongplanet.net/article419.html – I can find many more examples of Emma’s behaviors, which support his theory. The TOM theory is a dangerous one because of the way it can be used to justify the negative perceptions of Autistics. If someone has little or no empathy, we are much more likely to behave in a less caring manner toward them. We may insist this isn’t so, but there have been studies suggesting otherwise.”

As a result of all this I’ve paid the price by getting very little sleep.  Ask me about the traffic patterns on 7th Avenue between the hours of 2 and 4.  And exactly what was going on with that woman who kept shouting WooWoo at around 3:30AM?  Was she celebrating?  In the beginning stages of labor?  These are the questions plaguing me at the moment.

Emma making her silly face, which pretty much sums up how I’m feeling at the moment.

17 responses to “Losing Sleep, Autism and Strange Noises in New York City

  1. I’m familiar with SBC’s name and Theory of Mind, although not read the actual peer reviewed research on this. I do hear about it a lot, including when my child was at an intensive day-program for 10 weeks at a world-renowned research institution that has a strong autism research program. I remember attending a medical director’s support group for parents, where we ask general questions relating to autism. At one of these meetings, I asked about socialization and why this is supposed to be so “important” for our children on the spectrum. Theory of Mind came up as a preamble to social skills and how children learn about social cues.

    I read through some of the most recent comments on HP and one parent said something to the effect of her child knowing her “look” (you know, that “look” when your mom or dad gives you when you’ve done something bad.) I know of a nonverbal child who is quite impacted and even he knows when he’s done something that his mom won’t be happy about. My child certainly knows when I give him “the eye” and he starts covering his eyes to avoid looking at me.

    I think we straddle a precarious balance when it comes to parenting; we have lived with our kids all their lives, we observe them like a hawk because we want to see “how” to reach them so we can teach them. On the other hand we also want to do our due diligence and listen to what “experts” are saying based on their research. It’s important to remember that we are straddling the supposed adage, “once you’ve met a child with autism, you’ve met one child with autism” with the statistically driven presentation of “medical research” where “measurements” (and only what can be measured) are lumped together to create a general conclusion with statistical boundaries.

    I’ve found useful a more general wisdom of “if you can’t help at least do no harm.” I’m sure researchers like SBC probably genuinely believes he is helping and improving the outcomes of children on the spectrum, but the problem has always been the “interpretation” of these results and then reverse engineering the conclusions to explain one individual child’s behaviors or to use it to drive a treatment plan.

    • Hi Jane, thanks for your thoughtful comment. The biggest problem with SBC’s theories are he seems more interested in the theories themselves than actually learning whether they are accurate. I have an ever widening circle of Autistic friends, who range from non-verbal to being able to function and “pass” as they call the ability to blend in with NTs. There is not a single one of them, we are talking about a far larger “sampling” than SBC’s 20 participants, who lack empathy or are unable to sense what another is feeling. In fact, quite the contrary, many of them are so profoundly aware of other’s feelings and sensitive to what they may be thinking that it is often completely overwhelming for them. A few of these people have become very close friends, I would go so far as to say, I feel closer to a couple of them than I do any NT. I don’t know what SBC genuinely believes. What I do know is that the way he speaks of the Autistic population is with objectification terminology. These are interesting specimens to him, not people he has bothered to really get to know.

      • I’ve always found ironic how we can look at children on the spectrum who appear to literally be living through intensely hyperactivated sensory organs: a child who can’t look at people in the eye because it feels physically painful — a child who rocks or even hits oneself as a way to “drown out” intensely painful external environmental signals assaulting their sensory organs — a child who can see every single fiber of the carpet… and then we say these same children can’t feel and are “existing unto oneself” (given the word “autism”.) For me, these children are TOO sensitive, their filtration system are shut off so they experience the world at full blast and it is incomprehensibly overwhelming. They appear “unfeeling” because they are too busy trying to drown on every molecule that they are feeling with their entire bodies including their largest sensory organ (skin.) We can’t look at a person who turns her eyes burning from the sun and say “oh, she must be blind, look she is not looking” — she’s not looking because the glare is burning through her retina and she is doing what is “normal” in that regard — preserving her eyes.

  2. Definitely THANK YOU for writing it and for directing me to the “Intense World theory”. That definitely makes much more sense regarding my son and what I have learned so far… The TOM & lack of empathy stances not only bug me, but seem pretty ridiculous. I think you’d have to never have properly met an Autistic person to have come up with that conclusion. It seems they literally put a few kids in a lab, recorded their results and went on their way having never gotten to know a Spectrum Individual in any way shape or form.

    • Thanks so much for commenting. I think you’re right – “It seems they literally put a few kids in a lab, recorded their results and went on their way having never gotten to know a Spectrum Individual in any way shape or form.” I think that’s exactly what they did.
      I really love the Intense World Theory for Autism, Markram also did a TED talk that is fascination. If you google Dr. Henry Markram TED talk, you’ll find it. He’s amazing!

      • Thank you so much!! I’ll definitely look that up! I’ve just been accepted into an M.Ed (Special Education) program in the States (I currently live in England) so I’m kind of hoping this whole “controversy” will come up and we can discuss it. I’m curious to see what they’ll say about it. It’ll definitely help argue this point if I’ve watched his talk, so thanks!! (We’re leaving the UK cause I haven’t been able to get my son the services he needs here, I applied to the graduate program so I could get visas for the kids and me, while my husband waits for us back home.)

  3. The Sally-Anne test has been very widely debunked. Simon Baron-Cohen should be embarrassed to have his name associated with that study. Andrew Wakefield is another so-called “researcher” who humiliated himself by telling outright lies about autism in an attempt to get rich by spreading false information. The list goes on. These people are not to be respected. They grossly distort people’s understanding of a neurological condition that is really awesome and incredible. The general public will always be gullible enough to fall for that garbage, and it is our job to try to set them straight.

    I also think that the fact that people come on our blogs and your pieces on Huffington Post and write offensive comments is an indication that there is a public debate going on. Our voices are being heard. That’s a good thing. We are counter-arguing against an inaccurate public opinion, and changing public opinion is not an easy thing to do. But we are not being laughed at, dismissed or ignored anymore. People are arguing with us. That means they hear our message and they are aware that it conflicts with what they have been taught. Their confusion will diminish over time. The people who need to be told what to think will always listen to, and agree with, the loudest voices. And our voices are becoming louder. If we perseverate, then we will persevere.

    “First they ignore you, then they laugh at you, then they fight you, then you win.” ~ supposedly a quote from Gandhi

    • This is a wonderful way to think about it – “But we are not being laughed at, dismissed or ignored anymore. People are arguing with us. That means they hear our message and they are aware that it conflicts with what they have been taught. Their confusion will diminish over time.” I love that and will be rereading many times.

  4. Did you hear/read about the NT man who dove into the shallow end of a swimming-pool and hit his head hard on the bottom? Suddenly, although not musical before, he now plays the piano and has learned to play a total of 7 instruments…There is a lot more to the human brain than was previously thought.

    When they can’t explain it, doctors, psychiatrists and scientific theorists say: “It’s a miracle!” as they did when your father, whose prognosis was that he would never walk again, actually did walk after first getting back on a horse and riding, much to the horror of his physicians.

    I met a woman at the Institute recently, Amishi Jha, who trains military personnel through meditation to alter the structure of their brains so as to prevent Traumatic Stress Syndrome after deployment. A few years ago anyone who wasn’t a Yogi would have said that was impossible, but Dr. Jha has proved it through fMRIs before and after 6 weeks of concentrated training.

    All of which tells me that doctors and scientists still have a lot to learn and should keep open minds and not jump to conclusions because the data they use support what they already believe to be true. Just like a religious fundamentalist, they shoot an arrow into the broad side of a barn, and then paint a bulls-eye around it.

    • Wow! All this information was so cool! We always hear about how we only use a tiny percentage of our brains. You’d think they would keep their minds open about such an incredible organ.

    • Oh that’s good, Mom – “Just like a religious fundamentalist, they shoot an arrow into the broad side of a barn, and then paint a bulls-eye around it.” It’s incredible again and again we are shown how much we DON’T know. These assumptions that are limiting are just so destructive. That’s the part that people really need to understand. Whenever we decide we know that someone who is non-verbal therefore has nothing to say, or someone who does not look at us or does not express their emotions the way WE in the neuromajority would, that therefore they do not feel or do not care or any of the other assumptions being made, are limiting those people we’ve made assumptions about and in limiting them we ARE harming them!

  5. There will always be conflict in this world….it’s human nature for people to have formulated their own opinions etc…. I also agree with Aspie Kid that the louder you are the more you will get the message acrossed and while doing so, the awareness just becomes broader and broader! Thus making people well, more AWARE! 🙂 Aware that our kiddos are not science projects but kids like every other kid with feelings, personalities, likes and dislikes……By writing this wonderful blog, you have put yourself out there and you will no doubt hear negative thoughts. I hate that because you don’t deserve it but I don’t think there is any way around it. It’s why I would never be able to do it! I am way too sensitive and like you, it would keep me up at night too often! :O) You’ve been given a gift to be able to write so effectively and with so much love and thought! Please don’t let those bad comments slow you down! Use it as fuel to begin the next entry and the next and the next! You are doing great things Ariane!!!

    • Thanks for the encouragement Becky. My wonderful husband tells me I’m a bit like a bull dozer in this way. Very determined and not likely to change at this point!

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