Tuesday, October 9, 2012

Misunderstandings and misconceptions

I have a google alert set up that forwards me an email each day containing links to news articles related to Autism. Todays email contained 47 articles. 22 of them were about Autistic children being prone to wander off/ run away/ bolt/ whatever you want to call the terrifying experience of having your child vanish.

The first article I read (here from Sky News Australia) said,
"Almost half of US children diagnosed with autism spectrum disorder (ASD) wander away from safe places, and about half go missing long enough to alarm their parents, a new study has found." (OK- firstly, ANY period of time is long enough to alarm me if my child suddenly vanishes, but we'll let that one go).

It went on to quote
"'Children who were reported as missing were older, more likely to have experienced skill loss and less likely to respond to their name. They were also more likely to have lower intellectual and communication scores than non-missing children,' Law wrote."

I have an issue with this sort of reporting. You might think it is pedantic of me, but I feel that reporting like this just reinforces the stereotype that Autism equals dumb. In so many cases, this is just not true. Being unable to communicate in socially conventional ways does not mean a person has lower intellectual capacity.

It's probably unfair of me to pick on Sky News, but there were too many articles on this to go through them all. I know that in this article the writer is just reporting (loosely) what research found, and I guess the fact is that in the 1200 families surveyed for this study that is what they found. But the problem I have is that reporting like this, where an initial study (in this case they say it is the first study of its kind in the US) finds something, then all the popular media do a quick review of it, the general public base their beliefs on this watered down second hand report. Scientific process dictates that this finding now either supports or refutes a theory and further research should go on to build more theories around the findings, and seek to replicate them or disprove them. Taking the popular media report on an initial research finding causes misinformation and misunderstanding to circulate around the general population, and we end up with an assumption that Autism is something it is not.

My daughter "wanders". Her IQ has been assessed to be in the high range of what is considered normal. Her recent speech pathology report states that her receptive and expressive language are both in the high range of what is considered normal. She is Autistic. She has Sensory Processing Disorder. When she becomes anxious or experiences sensory overload she disappears for a while. If you didn't know her and you found her in her hiding spot she would likely behave in a way that you would find challenging. She probably wouldn't speak to you. She likely wouldn't respond to her name. She may try to hit or kick you. This does not mean she is not as smart as you!

We need to be so careful with our assumptions and with the stereotypes we choose to accept and perpetuate. Realising that the label my children have been given can act to cause misunderstanding in others about who they are makes me more aware of the misconceptions I must hold about others. And that is truly a challenging thought.


  1. Alex is low functioning, non-verbal, severe autism. His cognitive scores are in the 1st percentile, putting him in the severe and profound ranges of intellectual disability.

    I have triple locks on all of the doors, gates to slow him down before he gets to the garage door, and a gate to the door of his bedroom that gets locked at night just so I can sleep because he WILL run and has no sense of danger.

    He has bolted into traffic, we have had to chase him down the center of the street, and once when he got out and I didn't know it until several minutes had passed, he ran out in front of a lady who slammed on her brakes, parked in the middle of the street blocking traffic as much as she could and chased him on foot.

    Alex, because of his severe disability, his inability to talk, his lack of understanding danger, and his low IQ, cannot be out of my sight even inside the house.

    Goofy doesn't have a diagnosis yet aside from ADHD but he's verbal. He will bolt into the street, he will wander off but I can let go of his hand and let him walk close(ish) to me in the stores, he can play in the back yard alone. Goofy wandering off does not scare me anywhere near as much as when I look up and don't see Alex. Goofy disapearing for 30 seconds does not inspire panic. When Goofy is home with me in the afternoon, my heart does not stop when I see the front door open.

    I do think IQ plays a big part in how we react to, and the seriousness of, our kids wandering. I don't think they are trying to put all kids in the "dumb" category of autism, but not all of our kids are high functioning. As much as the stereotype that Autism equals dumb does not fit all of our children, they aren't all the "Rainman" type either.

  2. Hi Mac. Thanks for commenting and telling me about your experience.
    I can see that we have interpreted some of the information in the article differently, based on our differing experiences. If I understand what you are saying correctly, I think we are agreeing that the fact that Autism is such a big spectrum that covers such a wide range of abilities makes it important that we don't assume to know what that label means for each person it is applied to?
    If there is one thing I am learning from reading the many great blogs and facebook pages out there that talk about Autism (including yours!) it is that all of our children are such unique individuals! It is a constant challenge to me to not assume I understand how others see things, and to acknowledge that while we all have some things in common our lives are also very different in many ways. I try very hard not to assume, or perpetuate any harmful assumptions, in my writing, and I hope that my thoughts on this issue have not done that.
    I agree with you that IQ plays a part in the severity of the situation with wandering. I would certainly worry more when MissG disappears if she was more like your Alex. From what you've said she sounds a bit more like Goofy. I still panic when I realise she is gone. We keep doors locked at home to keep her safe, and have already stated discussions with the school she will attend next year about what they will need to do to ensure her safety. The shops and other outings are tricky too, and I've written before about the things we have to o to keep her safe :-).
    I don't think that the media reporting deliberately tries to put all kids on the spectrum into the "dumb" category either. I think it happens without them intending it because of the way they present the information to people who have no personal experience. As much as Rainman has had an effect on the stereotypes around Autism (and neither of my Autistic kids are like Rainman at all!), I think the media is having a similar impact. I guess from where I sit the popular media reporting on this issue works to help people misunderstand my daughter, but for you it might actually be helping in some way?

  3. Hi Michelle I agree the media likes to stereotype Autism. My son is high functioning and has a lot of trouble putting pen to paper that does not mean he is dumb. He is very intelligent, sometimes school will stereotype our ASD kids. If people take the time to listen to someone with ASD then they might have an understanding of ASD. I think the term mildly affected by ASD is used very loosely. Because this seems to be the case with my son. He maybe a good reader but he has problems with the simple things in life, the we take for granted. I hope one day the stereotype of Autism changes. They are all different!!


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