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The Most Common Misconception about Autism

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Don’t judge a book by its cover. Most of us were taught that somewhere in our upbringing, but we don’t really abide by it. Last week I went shopping in my favorite bookstore/coffee shop in search of a new read. (Yes, it was in the psychology and self-help section, and yes, I read such material for fun.) I was torn between two books on the topic of setting life and career goals. Both were written by competent authors. Both contained the wisdom I was searching for. In the end, I decided on one because, well, it was fluorescent orange and I thought that was pretty cool. Not very scientific, but human nature nonetheless.

In the world of autism, I have been guilty of judging my child by his cover. This is one of the biggest problems I find among other parents of autism-affected children as well. It results in many misconceptions about our kiddos.

Yes, Your Child Understands

Many children on the spectrum are delayed or limited in their ability to communicate verbally. Therefore, the people around them assume that they also cannot understand. It looks like a duck. It quacks like a duck. But, contrary to the popular adage, it’s no duck.

“She can’t understand because I tell her to go get her shoes and she doesn’t do it,” I’ve heard at least one mom argue. Said one dad,“He didn’t hear the conversation my wife and I had about him because he was singing to himself the whole time.”

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But many of our children do, in fact, understand. And they often hear everything.

A Breakthrough Moment

I’ve heard from kids who learn to communicate by typing and suddenly surprise their caregivers with statements such as, “Please stop talking about me in front of me.” Oops! We’ve all done it. If you are raising, teaching, or working with a child on the spectrum, at one time or another you’ve probably talked in front of the child as if he or she isn’t there.

I stopped doing it the day I brought my son to his doctor for a suspected ear infection. As he sat on the exam table, talking to himself and staring into space, the doctor looked at him and stated, “Ben, I know you don’t feel well, and I really want to figure out how to help you feel better, so here’s what we’re going to do …”

The doctor proceeded to explain, succinctly and not using baby-talk, what was about to happen (the exam) and how she was going to remedy it (the medicine). My son immediately stopped talking to himself, looked at her, smiled weakly, and gave her a huge hug. His anxiety seemed to melt away just at the realization that he was going to be helped. Maybe it was the relief that someone was finally talking to him as if he could understand. Because he could.

From that day forward, my family and I began speaking to my son as if he could understand. Even if he didn’t respond the way we wanted him to, or at all, we still did it.

Fishing for a Response

One day, after Ben had a 15-minute tantrum that involved hitting, kicking, breaking things, wailing, and gnashing of teeth, I lost it. I just sat and cried. When Ben noticed my distress, I decided to handle it the same way I would with my “typical” daughter. I explained that I was frustrated because I didn’t know why he had freaked out, and that it made me upset. He cupped my face in his hands, and with perfect eye contact, said, “It’s all right. It’ll be OK.”

I knew this was a line lifted from the script of his favorite movie, Finding Nemo, but that was OK with me. We were communicating, and it happened only because I gave him the benefit of the doubt.

Kids on the autism spectrum face many challenges on a daily basis. As parents and professionals, empathy and understanding need to replace assumptions. If you have one of these marvelous kiddos in your care, speak to him or her as if he/she understands, refrain from talking about the child in front of him/her, and politely ask others to do the same. Do it in spite of what the child’s “cover” looks like. It might just provide the child with the opportunity to write his or her own story.

© Copyright 2014 by Janeen Herskovitz, MA, LMHC, therapist in Ponte Vedra Beach, FL. All Rights Reserved.

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Comments
  • Delores June 13th, 2014 at 2:23 PM #1

    There are so many times that have to be frustrating for parents but I do think that it is important to rememebr that there are probably times when things are getting through there and you don’t really even realize that it is. In that case it is important to learn to choose your words and your actions wisely, because even though you think that they may not understand, they do.

  • Kandice June 14th, 2014 at 5:11 AM #2

    After being around autistic children some, I have come to see that this does not have to be the end, just perhaps a new beginning for the families who have a child with this disease. It is frustrating, I am sure, to have a child that you did not necessarily know that you could love quite this much but who is also so different in so many ways from what you may have always imagined for yourself. I am sure that it can also be quite scary to think about what the future of this child looks like compared to those who kind of fit neatly into those boxes of what others expect. But you know what? this is just going to be a different journey for you, one that I think can be even more unique and special than perhaps what others may find in life. Children always come with their own set of challenges, we all know that and yours could be even more difficult, but think about how strong this will make your family and how you will all be brought together in the end because of it. Applaud it, learn from it, and share with others all of the wonderful things that you can take away from it.

  • janeen June 15th, 2014 at 4:02 AM #3

    Delores, I absolutely agree! Thanks for the comment.

  • janeen June 15th, 2014 at 4:05 AM #4

    Kandice, well said. These challenges most definitely hold the possibility of making families stronger, and it’s a beautiful thing when we can help one another with what we’ve learned from the journey.

  • Kimberly June 15th, 2014 at 8:26 PM #5

    I think that for me, as a parent, it is important to remember that my kids have Autism, but also that they are people. If I want them to have any chance at surviving the world outside our 4 walls, I need to be honest with them… Both intellectually and emotionally. I have to talk to them, not at them, or around them. My kids have different challenges than neuro-typical kids, but that doesn’t mean that they don’t have boundaries. Just because they can’t communicate effectively with me does not mean that they do not understand me. We all have consequences for our actions. Words can hurt or heal. Communication doesn’t come easy in this house, but it does happen. We are very open about everything. We believe in transparency. I acknowledge and honor their difficulties while still trying to teach limits and expectations. We talk to them like any parent talks to any child. If I treat them like their is something wrong with them or with kid gloves, aren’t I setting them up for real failure in the real world? I try to teach them to be self aware as much as possible and I try to teach those in our lives to be sensitive to the process without treating the kids like they are somehow defective. Autism very quickly makes us into students and teachers. We try and learn all we can and then pass that knowledge on to everyone who will listen, including our children. We like to say that they have Autism, but it doesn’t have them. They get to make choices, for better or worse, and live with those consequences. Autism is an explanation, not an excuse… For them or for us.

  • Jenn June 16th, 2014 at 4:10 AM #6

    None of us want to hear things about ourselves and have this feeling that even though we can hear it we have no way to defend ourselves. That has to in so many ways be what being an autistic child can feel like. You can hear all of this judgement about you, but you don’t have the words or the ability to convey that hey, there is more to me than what you think that you see!

  • jernigan June 16th, 2014 at 4:04 PM #7

    I guess that I am guilty of this too, of thinking that if they can’t respond then they must not have a clue as to what is going on and I know now that this isn’t always true. There are many people who are trapped within this body or this mind that they have been given but it in no way means that they don’t hear and see us, and take to heart the things that are said around them.

    I wish that I had known that sooner, but I try to look at it now as just that I have had the chance to finally learn that and that will help me to share with others what I have learned along in my own journey working with those with mental and physical disabilities.

  • janeen June 16th, 2014 at 5:07 PM #8

    Kimberly, yes! I couldn’t agree more. Thanks for sharing that.

  • janeen June 16th, 2014 at 5:08 PM #9

    Jenn, excellent point! It must be very frustrating for them.

  • Graham June 17th, 2014 at 4:20 AM #10

    I had no idea that there were so many shades of gray in between that balck and white oft he workd oaf autism.

    I thought that it was one thing without realizing that there are varying levels of severity along the autism spectrum. There will be some people whom you automatically understand that this is what is going on with them while there will be others whom exhibit very few signs of autism at all except to the people who know them the best.

    I am glad that I finally have more of an understanding of the illness. I also think that if more people had this greater awareness and understanding then hopefully more could be done to prevent and treat autism all along the spectrum of severity.

  • janeen June 17th, 2014 at 8:59 AM #11

    Jernigan and Graham, thanks for your honesty. I’ve had so many conversations in front of my son before I knew he could understand, so I’ve been guilty of that as well. The important thing is to focus on the changes we make when we “know better”. Keep in mind also, that we can’t be sure that ALL people on the spectrum understand, since auditory processing is usually effected, but in my experience, most know more than they can let on. I recommend to parents that if they’re not sure, they err on the side of understanding…just in case! :)

  • Janet June 18th, 2014 at 5:39 PM #12

    Great article Janeen. We all need reminders.

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