Flawed Research


There are so many things wrong with the systems it just drives me crazy.  I have written before about the DSM and how that is not the way to diagnose Autism.  I just watched Laura’s documentary Vectors of Autism and I loved how she explained autism.  That could be a whole post in itself but really you should go check out her documentary & her blog.  And oh if you are on Twitter she is a must follow.  Well if you would like some insight on how an autistic thinks 🙂

I have many thoughts and ideas swirling around in my head and I am trying to focus them into the separate blog posts.  Must be a sign that I am getting back to normal – HA HA 🙂

Anyways the post for today is how some of the research done about autism is so flawed.  It really drives me crazy.  So much so I had planned to go back to school in the fall so I could provide care to autistics and possibly conduct my own studies.  Well now I just don’t see that as feasible with my current health issues.  But I still want to get involved with what studies are conducted.  Why do I feel so strongly?  Because so much of what is done is from the Neurotypical’s perspective.  Previously I have written about this related to Empathy but this isn’t the only area of flawed research.

Recently I read a wonderful post by Ariane over at Emma’s Hope Book about the Sally Anne Test.  I thought the test sounded stupid so I loved reading AspieKid’s lengthy description of how he would think the test was stupid but wouldn’t dare say that to the person conducting it.  So then the autistic is judged for not knowing the answer.  Reading this post reminded me of one of the studies that really gets under my skin.

This supposed study that supposedly shows that we have a lack of concern for personal reputation.  In this study people (a group of autistics & a group of non-autistics for a control) were doing some computer program that allowed them to donate to charity.  It was found that being observed had no affect on the autistics and yet had an effect on the non autistics.  The researchers went on to say “Autistic individuals may have problems with “metacognition” — in this case, thinking about what other people think of them.”

The article actually ends with this line:

“Pass it on: People with autism may not be able to take into account what other people think of them.”

Seriously???  I spend my whole life worrying about what other people think of me.  Been kicked down too many times.  Of course I know others have good or bad thoughts about me and that my actions can affect them.  So odd that this is the outcome.  If you talk to any autistic they will tell you how they have struggled their whole life trying to fit in.  Trying to get to a point of accepting themselves.  Having to balance not caring what others think with caring enough to try to fit in but then driving yourself crazy with trying to fit in…

Anyways on to discussing the study…

The first time I read this study I was so mad.  I immediately thought, no the results mean that autistics are more altruistic.  But I know so many people view Autistics as selfish and lack empathy because autistics seem like they are in their own world.  Well yeah (Laura explains better in her documentary) but autistics have different sensory input, have a different thought process and are basically subjectively perceiving the world differently.

If I am sitting at a computer and taking that test of donating or not donating with end result may be I have to give money than my thought process is:

1) Do I believe in this charity?

2) Do I have the money to spare at the moment?

3) Maybe if with my son I might care more about doing it for what he thinks because as a parent we should teach a child to be charitable.  However some random adult observer?  No.

I understand they may have thoughts about whether or not I donate.  Funny thing is my thoughts about whether or not someone else donates:

1)  Maybe they didn’t believe in the charity.  Everyone has a charity they believe in & everyone is entitled to make their own decision.

2)  Maybe they don’t have the money right now.

I don’t know maybe I do lack the understanding that not donating means lower personal reputation.  It isn’t exactly logical the way I have just walked through it.

Now robbing a store?  Calling someone a nasty name?  Shoving someone?  Yes that is personal reputation.

So what does that say about the morals of the people that are just donating because someone is watching.  Because they think this random person watching them is somehow going to think better of them?   I don’t think this study has anything to do with the autistics lacking any cognitive ability.

My charity story

There is a particular charity that I donate to monthly through regular withdrawals.  No one knows I donate to this charity because it is my business, not theirs.  I am only telling you because it actually has nothing to do with my charitable nature or my empathy.

This commercial like this came on a few years ago while we were watching TV as a family.  My son became very upset and told me I had to donate money.  He went on to tell me he wanted me to send his allowance every month to save the animals.  How do you say no to that?

He didn’t care who knew, he didn’t care about his “personal reputation”. Although he has definitely done some things trying to fit in.  So I know he can understand what others think of him.  At that time he only cared about the animals and was willing to give up what money he had to help.  That was his thought process.  Maybe he had a little empathy for the animals.

So really researchers- quit judging autistics on NT thought processes.  Take the time to understand how we think. And then you might be able to really measure how we really do care.  In fact we usually become consumed with how much we care.  And then we act on how we care, not whether or not someone is going to like us more for caring!!

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Comments

  1. Despite my training in electromagnetics and engineering, I wound up working as a psychiatric rehabilitation specialist. The DSM-IV was the bible. I look back on it now and it seems antiquated and Victorian.

    Our times call for science, not speculation or tradition. I’d like to thank CSI for making the public less satisfied with conjecture. What a wonderful cultural development.

    Thank you for a thought provoking look at autism research.

  2. 1funmum says:

    I read this blog and loved it. I deeply believe that most research needs to be revisited from the Autistic persons point of view and that we need more people with autism to become the researcher. I’ve learned more from diagnosed autistic people than I have from many textbooks written by professionals that don’t seem to really understand. I wish you the best of luck in all you do.

  3. Life and Ink says:

    Good post. And yes, I too liked Aspie Kid’s response as it is the voice of the autistic who we are supposedly helping that usually goes unheard. Perhaps our family is odd in that I am proud of my 21 year old with Aspergers (dx at 4) because for most of his life he has cared less about what people think, and now, the older I get, I seem to see better the behaviors and motivators of a great deal of people, I too have come to care significantly less about what people think. When I tell Ted this he looks at me with a grin on his face and says, “See. Haven’t I been telling you. Doesn’t not caring feel good.” Life is indeed much more peaceful. The child so often teaches the parent. 🙂 Moreover, there is much to be learned and appreciated in the lessons learned from an autistic.

    • I love when I don’t care what people think. I don’t care how many looks I get when I wear my hello kitty shirts:) but unfortunately I have to care to an extent at certain times – like work. It does help to control certain behaviors.

      My son has gotten a lot better about not caring what people think.

      I guess it is all about finding the right balance of caring.

      • Life and Ink says:

        Absolutely. The right balance is critical, as well as a solid moral compass. 🙂

  4. I would like to see studies and tests, which are developed by autistics to test such things as empathy, tolerance, theory of mind, etc in non-autistics. My guess is, non-autistics would be horrified by the results.
    Great post!

  5. It seems to me that all the test proves is that the NT people tested are shallower than the autistic people tested! Thanks for a great post, I know so little about research and diagnosis and the more I hear the more I hope it’s changed in future.

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