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Your Advice Requested: How to Explain Autism to a Child on the Spectrum?

By March 21, 2007

A reader asks:
My 6 year old son with autism has suddenly realized that he's different from the kids in his special education class at school and he doesn't want to be in there anymore. He wants to be in the class with the other "normal" kids but it's just not possible at this time. I have never told him of his diagnosis, he doesn't know the word "autism"..I didn't think I would have to talk to him about it for at least a couple more years, so this is really hard for me. I don't know exactly how to tell him or explain it so I was hoping that maybe there were some books out that were geared for autistic kids to help them understand about it. I can remember my mother getting me a book about girls starting their periods when I was young, something like that maybe? I would greatly appreciate any resources anyone knows of...I just don't know where to begin with this.
I'm afraid this is not an issue I've had to deal with very much - so don't have good resources on hand. Can you help?
Comments
March 21, 2007 at 6:48 pm
(1) sandy says:

I have told my son the word autism from day one. I didn’t want him to be afraid of the word as so many people are. The more I talked about it, the more acceptable it is for any body, including a child. When I grew up, no one talked about anything. My son is now 8, and realized he was ‘different’ quite some time back. I told him “you are different, and so is every single person in this world. But YOUR different doesn’t mean it’s bad, it just means different. Many people never know reasons for why they’re different. You’re lucky, we know. I don’t feel or sense the same things you do, and a lot of other people don’t too, but that makes you ok, not bad.” now I say these things in a “my child’ understand method :) Now I bought books for my son’s class room to help understand different, there is a real good one that does not pin point solely autism. I also leave out many things with the word autism right on it for him to see, just as plain as the TV guide.

my son was non vrbal for a long time, and when he began to speak, he stuttered horribly. his mouth was ‘broke’ he’d tell me :) well, they told me the stutter may go away and is common with severely delayed speech kids. they were right. So since his mouth isn’t “broken”, he doesn’t want to see his speech lady at school. I tell him “his words still need help, and they are they to help him, and all kids and people need help, not just him”

Special People, Special Ways by Arlene Maguire
What I Like About Me by Allia Zabel-Nolan talks about differences in all people/ pop up book
The Autism Acceptance Book by Ellen Sabin has exercises to help demonstrate differences and can be read to a child.

sometimes a book can help a child know they’re not the only ones with autism. I own all these books and if any would like a better more full description before they buy, just post that and I will send off my private e-mail.

March 23, 2007 at 12:00 am
(2) Tory says:

As an aspie I’d like to add one key point to the above advice, and that is to remember that your autistic kid thinks differently than you, both as an autistic and as a child, and therefore does not find the same things uncomfortable…I can just about guarantee that if you are straightforward and honest, the conversation will only be unpleasant for you. Just say to him ‘You’re autistic.’ and follow up with a description, answering any questions as they arise.

March 23, 2007 at 11:47 am
(3) Sandy says:

the straight foreword advise is good. all children are different and sometimes wording needs to be done carefully. my son has a ton of anxieties and if I had not been open about it to begin with and explained it to him later on, he would have obsessed on it and it causing death (just how my kid is) he also knows every inch of his body, inside and out and is more in tune with his inner self than I’ll ever be. he would investigate his body looking for autism if I had told him at let’s say age 6. he’ now just about 8.

kids with autism are still kids, and still have fears and because they do think differently, anything could magnify more fears, anxieties, low self esteem and obsessions.

my added advice would be to talk as easily as you can, with out nervousness. prepare yourself for questions your child may ask you. think ahead of time the questions he may ask and have answers ready for him. he may just ask ‘why did you ever tell me?’ ‘who else knows I have autism?’
no matter if you decide on reading a book to explain autism or just explain it to him with your own words, the more prepared you are for this conversation, the better it’ll be for your son.

March 24, 2007 at 6:17 am
(4) Jack says:

My favourite book in showing what the differences are between myself, with Asperger’s Syndrome, and the world of NTs is Kathy Hoopmann’s “all cats have asperger syndrome” (Jessica Kingsley Publishers, ISBN 1843104814). It’s well worth a look and suitable for that age.

March 25, 2007 at 3:46 am
(5) Toby says:

Absolutely do not hang the “autism” label on your son. I have seen and heard young children tell me that they can’t do something or another because they have a “disability.” Tell your son he does learn differently and then get him involved in sports, youth camps and other activities. Besides asperger’s isn’t autism at all.

March 26, 2007 at 7:05 am
(6) Sandy says:

I believe it’s all a matter of how you present a disability to any child. Asperger’s or Autism, both can have many of the same issues and it’s a parental choice as to how they tell a child. some parents will never have to deal with the question. but for other’s, my opinion is if a child asks, the parent should be as honest as they can, not only about a disability but anything in life. and I would bet a child knows better than we what their limitations are. sports or a youth camp is not for all kids and if there is not someone there to specifically support, instruct and help with social issues, those settings can be devastating more than helpful.
if my son made the statement he cant do something due to his disability, I would be very proud of him for this would mean he is speaking for himself and about the things that effect him. he is almost 8, and is still silent about what he cant, he just sits there and ‘doesn’t’ which to some would be more obvious than if he was to speak up and just say ‘autism’ label. for some children, knowing they have a label does not result in an excuse of ‘I cant’. the result can be a silent understanding of themselves.

March 27, 2007 at 10:58 am
(7) Toby says:

Toby-
How could you pssibly say that Asperger’s is not Autism? For your information it is considered high functioning Autism. It is part of the Autism Spectrum. Get your facts straight before saying thinhs that simply are not factual. Or do you think by saying it isn’t so will make not make your son be on the spectrum?

March 27, 2007 at 11:03 am
(8) Cecilia says:

Toby-
How could you pssibly say that Asperger’s is not Autism? For your information it is considered high functioning Autism. It is part of the Autism Spectrum. Get your facts straight before saying things that simply are not factual. Or do you think by saying it isn’t so will not make your son be on the spectrum?

March 27, 2007 at 11:04 am
(9) autism says:

Just for the record, Asperger Syndrome IS presently considered to be a part of the autism spectrum.

Lisa (Guide to Autism)

March 27, 2007 at 11:24 am
(10) Sharon A. Mitchell says:

A little book I highly recommend is called, “Asperger’s Huh? A Child’s Perspective” by Rosina Schnurr.

Another one also appropriate for young kids is, “Do You Understand Me? My Life, My Thoughts, My Autism Spectrum Disorder”, by Sofie Koborg Brosen.

Since your child already feels different than other kids and he’s asking why, definitely talk to him about autism. In my job, I’ve often been asked by parents to explain autism or Asperger’s to their child. I have not yet found a kid who is anything but relieved to know that there’s a name for it, that he’s not alone and things can turn out all right for him.

My son has had two diagnoses – PDD and Asperger’s. No matter what the label, he has the characteristics and the life implications. He reads a lot on ASD but puts down a book if it describes ASD primarily as a disability. He believes that he thinks differently and needs to go about things differently but is capable and able, rather than disabled. He also believes it’s just plain wrong to withhold diagnosis information from a child. He says, “How can you expect him to figure out how to handle it if he doesn’t even know what’s wrong?”

Then thirteen year Luke Jackson, author of “Freaks, Geeks and Asperger Syndrome” echoes that thought and firmly believes you should let your child know about his diagnosis. Eight might be a bit young to read Luke’s book but it’s entirely appropriate for every parent of a child with autism, PDD or Asperger’s.

Sharon A. Mitchell
http://www.autismsite.ca
http://www.allexperts.com/ep/1010-78033/Autism/Sharon

March 27, 2007 at 2:52 pm
(11) Janine says:

I was lucky, my then 4 yr old daughter just looked at me one day and said “I have autism?” Stunned, I responded that yes, she did. She went back to watching TV. About 15 mins later she asked again “I have autism?” Again I said yes. She went back to wandering around the room. After learning my oldest daughter had been explaining to other children at the park why she behaved a bit oddly; I asked my 4 yr old ” Do you know what having autism is?” Of course she said no, we have never hid it from her nor had we sat down and talked to her about it. I told her that her brain works differently than mine or her sisters. That this was both a good thing and a bad thing. Bad when she became overwhelmed and hit/ threw something. Good when she was sight reading words in Sr. kindergarten and other kids wanted to know why she seemed to be so smart!!
Either way she was loved just the way she was. that and being different was practically a requirement in our family!!

March 27, 2007 at 5:29 pm
(12) autism says:

Here is a website with links to 10 different websites with autism
information for kids (siblings, classmates, friends, and of course autistic
children themselves).

http://www.angelfire.com/pa5/as/talkingtokids.html

Here are two lists of autism books for kids. Some may be available at your
local library:

http://www.bellaonline.com/subjects/9393.asp

http://www.autism-resources.com/books-children.html

March 28, 2007 at 9:00 am
(13) Sandy says:

Asperger’s and autism are two different diagnoses although on the same PDD spectrum. It is true to say they are not the same thing, they are in fact two separate labels. Asperger’s in really not considered high functioning autism, it is considered the highest functioning on the PDD spectrum. There is a term “HF Autism” but that merely is the descriptive manner of the level of the child, and not an actual diagnoses. But in either diagnoses or of any of the 5 under the umbrella, functioning levels all vary per child. That is the important part more so than of which label.
PDD (Pervasive Developmental Disorders) is not an actual diagnoses, it is the category of which lists all 5 diagnoses. “Pervasive Developmental Delay” is another descriptive term.

PDD is that spectrum, the umbrella.

It doesn’t really matter what the diagnoses is under that umbrella, any child that asks and verbalizes the realization that they are different, deserves an answer of which they can understand.

March 28, 2007 at 11:34 am
(14) Jack says:

Sandy, I was dx’d as both HFA and Aspergers and told by a third consultant that they were the same thing. I was also told that if I’d been diagnosed when I was a kid I’d likely, based on family and medical evidence provided in the dx, been placed in a more ‘severe’ class of autism.

As a kid many years ago, rather than saying “I can’t”, I ended up having to try so much harder. Harsh realities of life. As an adult, and a teacher, I have seen too many children give up on something because they have a dx as an excuse.

March 28, 2007 at 11:43 am
(15) autism says:

Our son Tom was diagnosed as PDD-NOS at age three, and we were told he’d probably wind up with an Asperger’s diagnosis. At that point, his language was almost entirely scripted or memorized from videos, and he had some difficult behaviors such as hitting, bolting from the room, etc.

At age ten, I can see that he may well be moving toward Apergers: he’s become verbal to the point of talking my head off (though it’s by no means typical conversation), and he’s developed some of the anxiousness and self-consciousness that I’ve come to associate with many people I know with Asperger Syndrome.

March 28, 2007 at 1:54 pm
(16) Sandy says:

HFA and Aperger’s can be pretty much the same thing. there is no diagnostic criteria for HFA, it is a descriptive word-term to describe the functioning level. there is also no diagnostic criteria for HFA and autism. the ones who mainly use those terms are schools, parents and some doctors. you mostly hear schools use this term, I personally think they’re the ones who invented it! now diagnoses can change as child progresses how ever most if not all with Aspergers never had language delay. most if not all with autism did have language delay or language regression. but at present age when they evaluate, the diagnoses end up where ever that child/ person lands best.

I think it would be hard to know if a child just gives up due to their knowing they have a disability, or knowing just that it hard for them. many kids also notice their services that other kids don’t get :) our kids still can wonder why. I personally think our kids are smart, and if we told some of them or not, they’d already know they had something even if they didn’t know the name. I can say that my own child would never try anything on his own without adult persistence, and he could give up easier because many of the skills he lacks makes it hard for him. I think it’s human nature to give up when things get harder.

my kid has autism. it’s not the diagnoses that makes him have a harder time than other’s or to be different. it’s autism that does that, and yes, he’s going to have a harder time. I Know it, his step dad knows and I would bet my son already knows it. if he was to give up, maybe he needs a break first before he tries again. I can only imagine how difficult it truly is for him, when his hands, body, words and mind work so differently. does he deserve an excuse? some times I would say he needs one so he understands oh yea, it’s going to be hard and this is why but lets try again because I know you really want to do your best. my 8 year old really wants to learn to tie his shoes, and although he lacks fine motor skills I tried again to teach him. heart breaking watching a child whose fingers just cannot do many things, and to watch the sadness in the child has as he tells you his fingers are broken, then his frustration and final expected meltdown. I could have told him to just give up (should have told myself that too to avoid the meltdown and my breaking heart) but it is possible to teach a child about their autism, and to keep trying. my sons not ready to learn to tie his shoes, he needs to gain skills first. sometimes it does take years to gain a small ability and a person needs to recognize where each child’s pushing points are. if pushed too hard, the child would give up.

when my first child was diagnosed, I spoke with many adults with Asperger’s who never knew or grew up with a diagnoses. almost every single person I spoke with had wished they knew what it was when they were growing up and in school, not finding out so many years later as an adult. they had spent years wondering why they were different. no one will know if it would have made a difference if they did have that diagnoses, but they all felt in retrospect at least it could have helped them personally.

as much as we want to educate and inform the public about autism and related disorder’s and want their understanding and support, I often find it odd myself that we don’t consider this aspect too with our children. they probably need that education, information, support and understanding of themselves more so than public strangers would.

April 3, 2007 at 9:25 pm
(17) David says:
April 3, 2007 at 11:33 pm
(18) Monica J. Erickson says:

i was told by the child psychiatrist at the inpatient psych unit that aspergers is a high functioning form of autism.-ok, that’s my two cents-monica j erickson

June 1, 2007 at 11:49 am
(19) Susan says:

I’m so glad I found this site. My nine year old daughter has been diagnosed with PDD-NOS (pretty high-functioning), and lately I’ve been debating whether to tell her the “A-word.” My dilemma is this: if she had been asking questions along the lines of, why am I different, etc., I absolutely would have told her. The problem, though, is that she hasn’t done that. There have been recently some subtle comments from her. She stated (in a matter-of-fact, not a sad, way), “Alyssa has friends, I don’t.” Alyssa is her 11 year old sister. I reassured her that of course she has friends, but in reality her friends are typically her sister’s friends. Some of them do genuinely like her, though. (She can be sweet and quite funny although quirky…) Anyway, am I in denial?? My daughter has private speech therapy after school, and very recently, for the first time in, say, 3 years, she seemed to take note of the severely autistic girl who we pass as we are leaving the appointment. Although my daughter didn’t articulate anything, I could sense the wheels spinning in her brain, as if she was making the startling realization, hmmm…why do I need to go to the same place as this kid sucking on a washcloth needs to go to? I think I’ve answered my own question, actually. Just because my daughter doesn’t ask why she’s different doesn’t mean she hasn’t noticed it. I suppose it would be a kindness to explain to her why she is different and may struggle with things others don’t. Any comments or suggestions?

June 3, 2007 at 7:20 am
(20) marikka says:

susan, im so with you on this one. my son is nine and has never asked. Hes very high functioning its almost like he has this arogance towards kids he much prefers adult conversation or to spend time alone researching things about planes as he wants to be a pilot when hes older. He has said i have no friends etc one day when he was having a bad day at school i wanted to tell him i so did ive gone to tell him just not sure how to he tends to be always thinking about other stuff when im chatting with him and follows with have you finished yet mum lol his teacher wants to do a unit on disabilities in class to explain the differences with ppl i just worry that all the other kids will get it and he wont is all. Please give me some advice if anyone has some

November 30, 2007 at 11:18 pm
(21) hdfihfiosjkoIIII says:
March 28, 2008 at 9:19 pm
(22) Maryl says:

I am so glad I found this site. I am a special education teacher and have a student with a PDD-NOS diagnosis. I honestly don’t know if he thinks he’s different, but the older he gets, the more apparent it becomes to other kids. Thanks for the tips and book recommendations. I will share them with other teachers and with his family.

April 19, 2009 at 10:00 am
(23) Mary T. says:

As a teacher of children with a variety of disabilities I refrain from telling my children they have certain disabilities as well. I teach 5-7th graders, yes they do know they are different but we celebrate these differences. I too am different from other teachers as well as their parents, I have a hearing impairment and a speech impairment due to my hearing loss. Different is ok. You guys are great with the books and resources you have suggested, what a wealth of information!

By the way, for the argument, that Asperger’s Syndrome is Autism…it depends on what you read and who you listen to. I have a son who was diagnosed by one doctor as having Asperger’s Syndrome and another specialist said no, he has high functioning autism. Whatever the case he is different I would be upset if someone called him Mentally Retarded as would most people with Asperger’s Syndrome would, he’s a very bright child. Often, autistic individuals have some form of Mental Retardation along with their neuro differences. I have never seen any autistic child exactly like another which makes this disability so interesting and challenging. Just my thoughts I am not a specialist or play one on tv.

Mary T.

July 5, 2009 at 12:49 am
(24) Proud Mother says:

You can bet that if our kids had diabetes, they would be very informed and using the right terminology so that they could function in the world around them. I really think we are dancing around our own discomfort if we don’t use the proper terminology and teach our kids about who they are. It’s like talking about all those challenging things in life: sex, death, divorce, etc. the more we use the words, the easier it becomes. Kids know when there is an elephant in the room.

August 23, 2009 at 11:41 pm
(25) jennifer says:

I have a 7th grade student whose parents have asked me to answer her question about “what is autism?” she is gifted and has HFA (similar to Asperger’s but not, technically, because she did have a speech delay and Asperger’s kids do not). I can only find books too babyish for her or too sophisticated.

October 7, 2009 at 1:20 pm
(26) GoingTwinsane says:

I agree absolutely with you, Proud Mother! I answer my kids’ questions bluntly. Why beat around the bush? I am having a t-shirt made for my son that says, “I’m with neurotypical —>” similar to the “I’m with stupid —>” shirts.

My son is aware that he is not “typical” and he is fine with it because I am fine with it. I am one of those minority parents who does not believe my son needs to be “cured”. I think he is perfect the way he is.

Besides….stupid is far more an epidemic than autism.

May 28, 2010 at 11:31 pm
(27) A Lymbertos says:

#5… denial can”t be helpful either. Asperger’s is an ASD…. remember, be honest…

July 31, 2010 at 8:44 am
(28) Valerie says:

It’s been really helpful reading these comments and to know that there are so many others out there who understand the heartbreak you feel when you see the frustration in your child’s face because he can’t do things as easily as many of his peers. I can only imagine how much relief it would give an autistic child to know that he, also, is not alone in how he is feeling. I think my 7YO daughter knows she’s different even though we haven’t really talked about it yet. Thanks to all for sharing their advice on how to approach this sensitive subject and especially for the book recommendations. I really don’t want to screw this one up!

January 11, 2011 at 6:45 am
(29) Molly says:

My 9yo was recently dx with autism and I am looking for resources to help explain to him why he finds some things harder than other children (he was aware other kids found school easier than him by 6yo).

For me I see telling him why he finds things harder to be a useful tool, and I don’t see the dx itself being used as a cop out not to try, as he does that already, and he doesn’t know he has autism. If I can find him some child friendly literature that explains it, it will help because he will also know he is not alone!!!!

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