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John Robison

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When Should You Tell a Child They Have Asperger's?

Posted: 04/18/11 03:06 AM ET

Parents often ask me when they should talk to their kids about Asperger's or autism. I don't think there is a hard and fast answer, but in my opinion, the time to discuss brain differences is when the teen years are close. Before then, most kids won't be able to grasp the idea of why and how their brain is different from other people's. Any attempt to "label" them runs the risk of being counterproductive and damaging to their vulnerable self-esteem.

So what should a parent say to a young child with Asperger's? And how can they guide their child through the difficult early years in a way that most helps them grow into a happy, productive adult? Here are a few tips derived from my own life as a free-range Aspergian and my experience raising my son Cubby, who's now a fine young adult Aspergian himself.

1) In the early years, the most important task is developing communication skills.

In today's interconnected world, the ability to communicate effectively is the most important skill you can give a child, after he masters the basics of hygiene and behavior. Study after study has shown that kids with autism who receive intensive therapy -- 20 to 40 hours per week -- have far better outcomes as adults as compared to kids who are left to develop on their own. There are many cases of five-year-olds who could barely hold a conversation developing fully normal speech as adults, thanks to early intervention. There seems to be a critical window of time prior to age 10 during which kids can pick up these vital skills far more easily. If the window of opportunity is missed, the result may be lifelong communication impairment and significant disability. Some kids with autism prefer to relate through speech, while others choose written communication. Ideally, you'll help your child build his strength in both areas.

2) Find your child's unique strengths, and build them up.

Young children are diagnosed with autism or Asperger's when they can't accomplish or perform a task as well as their peers can and an adult takes notice. The child may not be able to make friends, or she may fail at school or something else. Besides a diagnosis, these failures lead to weak self-esteem, frustration and alienation. How can you combat those emotions in a child?

In my opinion, the surest antidote to failure is success. If you can help your child find what she is really good at, you will have given her a wonderful gift that will last a lifetime.

To do that, kids should be exposed to the maximum range of experiences. For example, I was technology-minded, and my parents took me to museums, bought me books on science and helped me experiment with chemistry sets, radio kits, home-built cars and all sorts of scientific toys until I found my strengths -- electronics and mechanics. My skills in those areas led me, as an adult, to my work, to my hobbies and even to my friends.

There's no way to know what your kid may like unless he sees it. It's sort of like offering strange but tasty foods: you can ask all day and get a no, or try it and get a yes and a smile. Once you find their gift, encourage it however you can and give it room to flourish. You'll be amazed with the results.

3) Teach your child the art of peaceful coexistence.

Parents talk an awful lot about helping their kids make friends, something all of us aspire to do. However, there is a social skill that's even more important, and it's actually easier to learn: how to not make enemies.

In my book "Be Different," I describe several strategies that will help an Aspergian achieve this all-important goal. For example, kids must learn to listen first, and then respond to what other people are saying and doing. They can't barge in and try to take over the group, as much as they may want to. Kids need to learn to look and act like the group they want to be part of. That may mean dressing a certain way, or even sitting in a particular place in class. When you learn to blend in, people like you better, and life goes a lot smoother.

Young people with autism have no instinctive understanding of social rules. They must be taught, explicitly, how to behave in common situations. I write about using Emily Post as a guide, but for young children, more basic instruction is needed. In particular, adults should recognize that people with autism have fundamental difficulties seeing the other person's point of view, which makes manners especially difficult to grasp.

All my life, Asperger's has made it tough for me to understand other people. That left me isolated and alone for much of my youth. Fortunately, that situation did not last forever, because "difficult" is not the same as "impossible." Once I knew what was different about me, I charted a course of self-improvement and change, the results of which are simply astonishing. From that perspective of adult success, I wrote "Be Different" to help today's young people benefit from the lessons I've learned. With that insight I hope they go on to even greater success than me.

 
 
 
Parents often ask me when they should talk to their kids about Asperger's or autism. I don't think there is a hard and fast answer, but in my opinion, the time to discuss brain differences is when th...
Parents often ask me when they should talk to their kids about Asperger's or autism. I don't think there is a hard and fast answer, but in my opinion, the time to discuss brain differences is when th...
 
 
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09:47 AM on 06/01/2011
Well, my 6 year old son has a full time aide at school so he obviously knows there's something going on. His teacher asked if I had a book she could read her kids on a day he was sick. So everyone knows but him. In this situation, we need to tell him. But for us it is much more about the day to day routine, such as "you don't eat that it has gluten and your body doesn't like that," "you have OT today" "did your therapist write you a good note?" and the like. Actually trying to define "autism" for him, which is something that quite frankly most people don't even understand seems not productive at this stage. He's happy, we're happy, I think the conversation will happen naturally in it's own due time (and probably over the next year).
03:04 PM on 05/31/2011
I agree with everything in your article except your suggestion to wait to tell kids about their Asperger's or High Functioning Autism. The child will certainly not be able to understand all of what it means, but they will be able to understand what it means to him or her. Being able to name it gives the child power. My daughter with autism also has Down syndrome, she can't fully comprehend what either "label" means, but we take any shame out of the label by simply addressing and accepting, shining a light on what otherwise might stay hidden or secret in a child's mind. It is the same with our kids who are adopted, they grow up just understanding that they were adopted and that they are our kids. The one was six when adopted, the other is Hispanic and we are not, so he will see the difference anyway. =) I think this could be difficult if the parents are unable to accept the diagnosis, so even though this is best for us, I don't believe it is best for all.
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PCFree
Computers & Cameras & Cars, Oh My!
12:07 AM on 04/24/2011
BTW, I am reading your book "look me in the eye" to my 11 yr old and she loves it!
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PCFree
Computers & Cameras & Cars, Oh My!
12:06 AM on 04/24/2011
When we asked our daughter what being Aspie meant, she replied "I'm smarter than everyone else." Well, she was right! She was tested at the hospital with a 132 IQ at age 3!
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krm1255
Facts are not negotiable
06:36 PM on 04/23/2011
I suppose 52 is pretty late. I figured out that was why I never fit in as a child when I read the symptoms of Asperger's at 52. But my mom did all the things in this article intuitively - she knew I was different, but the diagnosing wasn't as common back then.

The worst thing was when another adult told me in my 30's that I "enjoyed being different". Say what?

Anyway, the advice in the article is good for any child in my opinion.
10:33 AM on 04/21/2011
I respectfully think that waiting until the child can grasp the situation might be much too late. Aspies need to know what they are dealing with, because having this dx makes their life harder, they need to know why they have to work harder. When do you tell your deaf child about how others hear? When do you tell your blind child that others can see? I told my Aspie as soon as I knew the words... so I could tell her why it was going to be harder, but it was going to be possible.
She needed to know that other people spoke this other language, one she did not see, body language. She needed to know that other people instantly understood when a joke was a joke, or when it was cruel. She needed to know that stimming was difficult for people to watch, so that she could make the choice to indulge or not. She needed to know that other people spoke with inflection, and would feel more comfortable if she did too, so that she could choose to be motivated to learn how, or not. She had so many more lessons to learn, and she needed to know why.
That said, Thank you for talking about your experiences. All these conversations need to happen.
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Naithom
Estne volumen in toga, an solum tibi libet me vide
12:38 AM on 04/22/2011
Janet, we did the same thing with our son. As David explained to us, reading other people's emotions was like dealing with a second language. By giving him the tools to understand why he had what he had, he was able to accept and deal with it. He treats his Aspie like he does his green eyes and brown hair.

He has learned to be patient and gentle with people and has actually set up a tutoring program at his middle school because kids come to him with both personal and academic problems.
05:54 PM on 04/20/2011
Hell, a lot of this is good advice for using with non aspie children!
02:08 PM on 04/19/2011
John, once again your clear and direct writing and teaching style results in plain, easily understandable, complete information. I agree there is not hard and fast answer, as every child is different. I asked Phoenix's psychologist several months ago if I should tell him about Asperger's, and she said no, that he was too young. However, he would overhear me talking to friends about it and he would become upset. I figured he was mature enough and intelligent enough to explain at least SOME of what Asperger's was and how it affected him. I told him Asperger's made him special. That because of Asperger's, he often (literally) saw things many people didn't, understood many things in a different way than many people, understood many things most children his age didn't, and that he might hear, smell, and feel things many people would not. I explained that he would need to work a little harder than many kids to learn some social skills such as approaching people, having a conversation, and about what was and wasn't appropriate behavior around certain people in certain situations. We discussed all of these in great detail, and he asked several questions which showed me he understood what I was telling him. We've worked on his social skills daily for years. I have to say, though, that after reading "Be Different" my job of teaching him social skills has become MUCH easier. THANK YOU, John.
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12:37 PM on 04/19/2011
When the school was complaining that my son was different and needed a label so they could teach him, we got a label for him. High functioning autism and later, maybe Asperger syndrome but we never thought about withholding information from him. He took it in stride and we just continued trying to find good solutions for him, His sister is profoundly autistic so maybe, that's part of the reason, we didn't see any reason to tiptoe around whatever was going on with him.
08:58 AM on 04/19/2011
John I am sorry but as parent of two children with aspergers waiting until they are teens can be devastating to their self-esteem and understanding of themselves. Children tend to blame themselves for issues and problems. When we finally told my oldest at 9 he was relieved to know he wasn't doing anything wrong and that none of his issues were his fault. He thought he wasn't working hard enough or not all that intelligent. The reality is that we should have let him know years earlier that the therapies and aides and special education support was to help him not punish him. Children make up all kinds of things in their head about why things happen. Parents need to protect children from their own imagination at times. To not do that would be cruel. You need to let your children know as soon as they can tell that they are different than their peers that there is this thing called aspergers. That it means their brain functions just a little differently. That is all. That it means they may need more help then their peers with some issues but that everyone is going to help them and it is going to work out.It never has to be a long drawn out convoluted discussion. it can be short sweet and directly to the point, which is we love you so very much.
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thinkingwomanmillstone
great, green, globs of greasy grimey GOPerspeak.
08:23 PM on 04/20/2011
I agree with you totally. I knew a mom whose son burst out crying when his doctor mentioned his autism during a routine physical...he thought his mother didn't know and was afraid she wouldn't love him when she found out. If your child brings up the topic in any way...ie why am I in a different class or why do I get so upset...just talk about it. It's like the myth about the "birds and the bees talk"....it's a topic that should be talked about without fear or embarassment throughout life.
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Naithom
Estne volumen in toga, an solum tibi libet me vide
12:46 AM on 04/22/2011
I have to tell this story here among other parents of Aspies. When our son started asking about the birds and the bees, We gave it to him age appropriately but with correct medical terminology. We also got him some books on the subject to read. (David was reading at 18 months.)

His kindergarten teacher called one day and through the laughter I understood her to say that one the way to school, David had decided to teach the other children about the birds and the bees. I winced and asked her, "Barbara, did he at least get it right?" "Yeah, right up until he got to the Filipino tubes."

We have laughed about that ever since.
07:17 AM on 04/19/2011
This is a wonderful article and the comments just brilliant!

My approach is that every single human being is different and just as we have different colour hair and skin, we can be different sizes and can speak different languages so too can we think and behave differently.

It is modern society that likes to put a label on these things and I wonder whether if the labels didn’t exist would there be such a stigma attached to people suffering with the conditions? If we had decided not to call out Autism, or ADHD, or Aspergers whether there would be segregation, or the bullying? On the other hand, would there also be the increased knowledge of these conditions and the practices of how to deal with them and promote wellbeing and quality of life with the sufferers.

In terms of when we should tell our children....I think we know our own children best and we know when they are recognising that something is different....it is then we need to start talking about it. Like a lot of people have said, to start too early could potentially create more of an issue.......

Great article and wonderful comments filled with very positive messages.

Thanks.

Craig Ing
www.craiging.com
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Chantal Sicile-Kira
Author, Advocate, Founder of AutismCollege.com
12:25 AM on 04/19/2011
Thanks, John, for sharing your experience and knowledge - it helps us all.
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Stephen Borgman
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04:10 PM on 04/18/2011
John, thanks for sharing your perspective on this all important subject. It's so important to share with kids their strengths and the fact that they are mainly differently abled, with a different way of thinking. The intensive intervention is well documented, and has made a very big difference in many kids I have observed. One curriculum I highly recommend is Michelle Garcia Winner's social thinking material for helping kids on the spectrum understand the hidden rules of social thinking and interaction.
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MelodieSays
tell the truth; they will never believe it
03:53 PM on 04/18/2011
My son knew he didn't fit in, in pre-school. One of the saddest days of my life was spent holding my thrashing son while he sobbed, "I don't want to be different".
How simple and how profound. The realization that the world is hostile to creatures it does not immediately recognize or understand. Now he is so compassionate and wise beyond his years.
His 'difference' is his unique sensitivity. His vision is a gift to the world.
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topkatnc
Give a stray cat or dog a chance .
10:16 PM on 04/18/2011
He sounds like a wonderful child ... and he's lucky to have a parent like you ..
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MelodieSays
tell the truth; they will never believe it
02:49 PM on 04/20/2011
Thank You
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librainstars
even the smallest things in life make a difference
03:14 PM on 04/18/2011
My son has PDD. From the start he knew something was different. I dont mean bad either. He just knew he understood things different at times.
quoted out of your story
" Before then, most kids won't be able to grasp the idea of why and how their brain is different from other people's. Any attempt to "label" them runs the risk of being counterproductive and damaging to their vulnerable self-esteem. "
I told my son as soon as I knew. As soon as he was Dxed. He needed to know. He kept asking me.
He got early help as in speech. As he could not be understood for years.
for him I think it helped he knew. Not that he understood it all the way. As I still dont.
We were very open about it. Hes 20 now. he just had another story doen on him.
His end quote is
" everyone is different,everyone thinks in their own way. We are all human and we are all on the same planet"

As put by him it took him years of watching ppl on how to act and talk. He still at times gets lost.
My friends were wonderful with him. I got very lucky that way.
I wish the best for you and your son. Great writing.