Telling child about Autism

[Guest guest]

Hi Suzanne-Great question! I have an 11 year old that is profound and a five year old that is mild-moderate and still non-verbal and my 6 year old daughter is diagnosed with PDD-NOS. After she was diagnosed last year, I tried explaining it to her, but she refused to believe that she has it because she talks- (her brothers don't) I decided that maybe she would do better to know that she doesn't have it- so I told her that she was right, she's very smart and that she is fine. For her at her age, I think it helped to go along with it because she is very capable but tries to act like she's not. I think she would have used it as an excuse. I had her moved from the class she was in last year and had started in again this year about three weeks in because I could see that she was being babied and she was playing us! Sure enough- she was! She can read on a third

grade level just slower than the rest of the kids in her regular first grade class. We got really lucky and her teacher taught ESE for 8 years before and so she made do everything herself and even the OT and Speech therapists were shocked! She could do WAY more than anyone thought! Her teacher now doesn't put up with any of her nonsense and does not give in and her progress is AMAZING. The kids in her class have taken her under their wings and just love her, but that will not be the case in the future because of her social issues. That's her biggest probem. Repeating, and not being able to have "normal" kid converstations and not intiating play and doing this repetitive finger thing beside her eye when she's excited. I know that soon, there will be some kid who decides to ask her why she does her finger thing or why she's "odd" and then I guess I will have to change my story- UGH! I would love to hear how other parents have dealt with

this issue! :)Subject: Telling child about AutismTo: Texas-Autism-Advocacy Date: Thursday, January 21, 2010, 12:37 AM

Hi,

I was wondering if anyone knows what age you should tell your child they have Autism and what it is about? How do you go about explaining Autism?

Thanks,

Suzanne

[Guest guest]



Remember that book "Everybody poops?" Well when I talk to kids about autism I remind them that everybody stims. I point out legs hopping up and down, hair twirling, pencil chewing etc. My child is in middle school now. His leadership class wrote cards for him asking him any question they liked. He answered them and read them back to the class. He uses a letterboard to communicate using the RPM method. The kids are great to him and there are even 2 girls who fight over him for Science labs and he won 5 points for everyone on his team in Social Studies so this goes a long way towards being accepted. Lots of kids quirky just pop in on the chess club someday!

Trina

Telling child about AutismTo: Texas-Autism-Advocacy Date: Thursday, January 21, 2010, 12:37 AM

Hi,I was wondering if anyone knows what age you should tell your child they have Autism and what it is about? How do you go about explaining Autism? Thanks,Suzanne

[Guest guest]

I have discussed it several times with my son (9) but I'm not sure he "gets it". If he asks what I'm doing when watching an autism video or something like that, I make it a point of saying "He has autism, just like you", but never in a negative way. When he or his NT sister (5) asked why we went to speech therapy, I said "Because Max has autism and this helps him talk better." I don't make a big deal out of it but I answer their questions as honestly and simply as I can.

-Sandy H.

To: Texas-Autism-Advocacy Sent: Thu, January 21, 2010 8:06:46 AMSubject: Re: Telling child about Autism

Hi Suzanne-Great question! I have an 11 year old that is profound and a five year old that is mild-moderate and still non-verbal and my 6 year old daughter is diagnosed with PDD-NOS. After she was diagnosed last year, I tried explaining it to her, but she refused to believe that she has it because she talks- (her brothers don't) I decided that maybe she would do better to know that she doesn't have it- so I told her that she was right, she's very smart and that she is fine. For her at her age, I think it helped to go along with it because she is very capable but tries to act like she's not. I think she would have used it as an excuse. I had her moved from the class she was in last year and had started in again this year about three weeks in because I could see that she was being babied and she was playing us! Sure enough- she was! She can read on a third grade level just slower than the rest of the kids in her regular first grade

class. We got really lucky and her teacher taught ESE for 8 years before and so she made do everything herself and even the OT and Speech therapists were shocked! She could do WAY more than anyone thought! Her teacher now doesn't put up with any of her nonsense and does not give in and her progress is AMAZING. The kids in her class have taken her under their wings and just love her, but that will not be the case in the future because of her social issues. That's her biggest probem. Repeating, and not being able to have "normal" kid converstations and not intiating play and doing this repetitive finger thing beside her eye when she's excited. I know that soon, there will be some kid who decides to ask her why she does her finger thing or why she's "odd" and then I guess I will have to change my story- UGH! I would love to hear how other parents have dealt with this issue!

From: suzburns <suzburnsyahoo (DOT) com>Subject: [Texas-Autism- Advocacy] Telling child about AutismTo: Texas-Autism- Advocacy@ yahoogroups. comDate: Thursday, January 21, 2010, 12:37 AM

Hi,I was wondering if anyone knows what age you should tell your child they have Autism and what it is about? How do you go about explaining Autism? Thanks,Suzanne

[Guest guest]

Great idea Trina!yes, everybody stims!  My respite worker who is now eighteen (I have been her riding instructor since she was ten) stims whenever she sits down.  Her leg is constantly bouncing.Some people bite their lips.  Some chew on their hair.  I also think that many compulsive behaviors can be considered " stimming. "  

This was a great way to explain it.My son, I think, has always been aware since he began to speak again, that he has autism.  I explained to him that he just has a different way of seeing things and that I love seeing the world from his point of view.

As to the biomedical issues and immune issues, he hates the asthma and always getting sick.  I just support him as best I can.  Whenever I feel as if I am getting overwhelmed by autism myself, I think of Thoreau's words,

" If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.  Let him step to the music which he hears, however measured or far away. " There are no two of any of us who are wired the same.  I would never explain anything to my son in a manner that would make him feel defective or less than.... I think for our children as for all children, we have to let them know that they are dear and unique and that we wouldn't trade them for any other child in the world, no matter what.

Haven

[Guest guest]

Trina I loved what you shared! Awesome! I'd want to be his science partner too.

>

>

>

> Subject: Telling child about Autism

> To: Texas-Autism-Advocacy

> Date: Thursday, January 21, 2010, 12:37 AM

>

>

>

> Hi,

>

> I was wondering if anyone knows what age you should tell your child

they have Autism and what it is about? How do you go about explaining Autism?

>

> Thanks,

> Suzanne

>

[Guest guest]

Haven this is how Son-Rise uses where the child is as a doorway into their

world. I think some might believe that you just mimic the child all day and

somehow they magically start talking.

They have a very specific model that they follow measuring eye contact,

communication, flexibility, and communication.

But we USE the stim (ism) as a way to form the relationship. The kids show you

the way in, so that you can start to show them the way out.

You are right we all stim (ism). It's part of being human.

>

> Great idea Trina!

>

> yes, everybody stims! My respite worker who is now eighteen (I have been

> her riding instructor since she was ten) stims whenever she sits down. Her

> leg is constantly bouncing.

>

> Some people bite their lips. Some chew on their hair. I also think that

> many compulsive behaviors can be considered " stimming. "

>

> This was a great way to explain it.

>

> My son, I think, has always been aware since he began to speak again, that

> he has autism. I explained to him that he just has a different way of

> seeing things and that I love seeing the world from his point of view.

>

> As to the biomedical issues and immune issues, he hates the asthma and

> always getting sick. I just support him as best I can.

>

> Whenever I feel as if I am getting overwhelmed by autism myself, I think of

> Thoreau's words,

>

> " If a man does not keep pace with his companions, perhaps it is because he

> hears a different drummer. Let him step to the music which he hears,

> however measured or far away. "

>

> There are no two of any of us who are wired the same. I would never explain

> anything to my son in a manner that would make him feel defective or less

> than.... I think for our children as for all children, we have to let them

> know that they are dear and unique and that we wouldn't trade them for any

> other child in the world, no matter what.

>

> Haven

>

[Guest guest]

I believe the below information is one of

the best I’ve ever seen about explaining autism to a child. It appeared

first in a Connections Center (RDI) newsletter, but I thought some of you might

find it helpful. Dr. Gutstein is one of the founders of RDI (Relationship

Development Intervention).

Dema K. Stout, M.A

Certified RDI Consultant

Texas Teaching Certification in Special

Education

Professional Certified Coach

Answering a Child's Questions

about Autism

Last month, Dr. Gutstein received a letter from , a

10 year old boy who is on the autism spectrum. He was diagnosed at the age of

3, and recently his parents started discussing autism with him, in terms of

giving it a label. This year, is in Grade 5 at school, and part of

his education is self-directed research projects. He decided to do his

current research on autism. Although had several books on the

subject, the students were required to write to an expert in the field and

posed a number of excellent questions in an email to Dr. Gutstein.

and his parents thought Dr. Gutstein's answers might also be helpful to other

children, so with their permission we are reprinting Dr. Gutstein's reply.

Dear ,

Thank you so much for your questions. They were excellent and I hope I can

help you to answer them. Here I go:

* What is

Autism?

Autism is a type of a learning disability. That means that some types of

information is harder for your brain to process than it would be for other

people. Many people have learning disabilities. I have an Attention

Deficit Disorder. That is a type of learning disability where, if the

information is not interesting enough for me I have trouble paying attention to

it. I take a medicine called Ritalin to help me do better. The learning

disability caused by autism is different than mine and there is no medicine

that makes it go away. People with Autism have trouble when there is too

much information that they have to understand at the same time. They also

have trouble when information changes too quickly and they have to make sense

of all the new information and decide which changes are important and which are

not. Since people change more quickly than anything else on the planet

earth, persons with Autism sometimes have trouble making sense of what other

people are thinking and feeling or are trying to communicate.

* Where does

Autism come from?

Some problems have one single cause. Other problems may be caused by

several different things that are not working as well as they should

be. Autism is in the second group. People may have the Autism learning

disability for a number of different reasons. But we do know that you and your

parents did not cause Autism. The cause was something that happened in your

brain before you were born. But however it began, your brain is not

developing the type of connections it needs to solve all the different problems

that you need to learn to solve.

* What makes

Autism better or worse?

The main thing that makes Autism better is if we can teach your brain to work

in a more connected way. It is helpful to think of your brain not as one

single computer, but as hundreds of different computers that need to talk to

each other all the time to work really well. That is what we call a

network. We believe that when you have Autism, all the computers may be

working well, but they are not networking as well as they should be. If we

can teach them to communicate better with each other then we can make the

autism better.

* How many

people have Autism?

The latest information from the Center for Disease Control, which is the

government agency that tries to figure out these things, is that about 1 out of

every 150 people have some type of Autism.

* What kind of

help can people get when they have Autism?

Well the type of help I invented, called Relationship Development

Intervention®, or the RDI Program for short, teaches parents to be teachers to

their children. Parents learn to teach their children how to make sense of

the type of information that is hard for people with Autism. It can be

hard work. But children with Autism learn to think in a new way and

thinking is the best way we know to teach our brains to work better. So as

you learn to think in new ways you are actually changing your brain!

* How do people

behave when they have Autism?

There is no one way that people behave when they have Autism. Some people

with Autism are very quiet while others are loud. Some people with Autism act

out in class and some have perfect behavior. Some people with Autism like

to eat everything and others are very picky eaters.

* Does Autism

ever go away?

That is a tricky question. As I said before, I have Attention Deficit

Disorder. I have had it my whole life and I do not think it will ever go

away. But it does not bother me very much. It does not keep me from doing

the job I like to do. It does not keep me from having good friends and a great

family. So I don't really worry about it going away. That is how I feel

about Autism. It doesn't really matter if it goes away or not. It is more

important that people with Autism can have a good life and achieve all the

goals that they make for themselves. That is what I think can happen.

I hope my answers helped you with your report. Thank you again for

writing to me.

Sincerely yours,

Dr. Gutstein

From: Texas-Autism-Advocacy [mailto:Texas-Autism-Advocacy ] On Behalf Of suzburns

Sent: Wednesday, January 20, 2010

11:37 PM

To: Texas-Autism-Advocacy

Subject:

Telling child about Autism

Hi,

I was wondering if anyone knows what age you should tell your child they have

Autism and what it is about? How do you go about explaining Autism?

Thanks,

Suzanne

[Guest guest]

I really like the book, " Different Like Me: My Book of Autism Heroes. " I have a

link to it and a few other children's books here:

http://www.positivelyautism.com/volume2issue6/section2.html

Caldwell, M.Ed.

http://www.PositivelyAutism.com/

>

> Hi,

>

> I was wondering if anyone knows what age you should tell your child they have

Autism and what it is about? How do you go about explaining Autism?

>

> Thanks,

> Suzanne

>

[Guest guest]

kid who decides to ask her why she does her

finger thing or why she's " odd " and then I guess I will have to

change my story- UGH! I would love to hear how other parents have dealt with

this issue!

Hmmm, tricky one.

You might want to ask the teacher if you can make a presentation

to the class when your daughter isn’t there—that has made a

wonderful beneficial difference in my son’s classes.

My son is 11 and fairly integrated in the community (general ed 5th

classroom with no aide or curriculum modifications, sings in choir at church. .

.. .playing on a typical basketball team (albeit 4th graders) ) and I

have a younger daughter. For the record, he had no functional language at

3 years old and had a classic autism Dx from several credible professionals in

town.

Personally I thinks it’s better for the parent to say something

in response to the child’s question rather than taking it upon themselves

to ‘disclose’ to their child. Before my son was really realized

he had “autism” some horrible drama teacher at Main Street theater

in Houston embarrassed me by asking me rudely in front of him and a group of

waiting moms if he had autism before she kicked him out of the play (this was

after I had been told that they would work with him. Don’t support

Main street theater—they suck)

I’ve had to explain more to my younger daughter—why her

brother has outbursts or can’t eat a lot of the foods we eat, etc.

A couple of years ago when I was doing a lot of advocacy, my then

9 year old son looked over my shoulder while I was at the computer and asked me

if kids with autism were my hobby and why. This was the same year that he

was in public school for the first time, so he was part of the day with other

kids with autism who didn’t speak much in a self contained classroom and

part of the day in general ed. And was becoming more aware of this.

I gently explained that he had autism. . .which led to his

question of ‘what is autism?’ Then I pointed out some areas where

he was having challenges with foods, friends, noises, calming himself down,

etc. then I also pointed out some of his gifts from autism—the focus, the

gift of fabulous hearing/sound discrimination, the memory. That autism

gives him a unique way of looking at the world . . . .and he was satisfied with

that answer.

I’ve been careful to try to set the expectation that autism

is not to be used as an excuse not to try something new or to try his best at

school or in the community.

A positive point is that understanding that is a sign of self

awareness that shows maturity. ..however it’s tougher on his self esteem

now because he still doesn’t have any friends—he has peer helpers

and a circle of friends who look out for him, but no one who sees him on the

weekends or invites him to b-day parties.

S.

" Here in America we are descended in blood and in spirit

from revolutionists and rebels - men and women

who dare to dissent from accepted doctrine.

As their heirs, may we never confuse honest

dissent with disloyal subversion. "

Dwight D. Eisenhower

[Guest guest]

Thank you for your reply! We've tried talking to her many times and all kinds of ways about not doing the quirky finger thing by her eye when she gets excited and nothing is working. The problem is that she will stop at the end of each sentence when reading and do it too. It's one of the things that is keeping her from passing her reading tests because she is sooooooooo slow! She's not doing it as much anymore because she uses her finger to follow the words to speed her up but she still gets so distracted. Are we supposed to let them stim? My oldest claps his hands very loudly and hard all day if you let him but the ABA therapist at school says to block him from doing it- but of course that stim hurts everyone's ears and is extremely annoying. He's on the profound side and my daughter is on the very mild side. Any advice? Does it depend on how much they

stim? I hope I haven't been going about this the wrong way with her.

From: suzburns <suzburnsyahoo (DOT) com>Subject: [Texas-Autism- Advocacy] Telling child about AutismTo: Texas-Autism- Advocacy@ yahoogroups. comDate: Thursday, January 21, 2010, 12:37 AM

Hi,I was wondering if anyone knows what age you should tell your child they have Autism and what it is about? How do you go about explaining Autism? Thanks,Suzanne

[Guest guest]

Suzanne:This is how my son's doctor explained it to me when I wondered if I should stop my son's stimming:He asked me what I did to relax.  He asked me what was my favorite thing to do in the world.  I told him, " Ride horses. "

He said, " Now, imagine that every time you went to get on a horse someone jerked you out of the stirrup. " I said, " I would be po'd! "   We all have coping mechanisms.  Maybe ours just aren't that noticeable.  However,  Since my son started stimming again when he had ceased stimming completely at one point gives me cause for concern.  I will always want to know the " why " of it from a biomedical and neurological viewpoint.

That being said, I think if it is a neurological or biomedical cause, then I doubt they can control it.  One would have to find the cause and then see if it could be controlled using diet or some kind of metabolic supports (and I'm sure Big Pharma has something to control it if a parent wants to use theirs).

I confess there are times when my son's stimming just gets on my nerves.  Sometimes I tell him that the den is a " no stimming zone. "   He can stim anywhere else int he house, just not the den (because I need a break!)

I also think about stimming's possible comparison to Parkinson's.  No one would EVER tell a Parkinson's patient to stop shaking.  This would be rude and impossible too.  Why do we expect our children to stop?  I guess if he could stop, it would make it easier for him to fit into society.

A little girl in his class asked his aide one day, " What's wrong with Ethan? " I'm not sure what her explanation was, and until our schools teach diversity and acceptance, many of us may want the stimming to stop because we fear it will open our children up to non-acceptance and bullying.

I always thought that if my child were recovering, the stimming would stop.  It did, but it came back with a vengeance.  But my son has made and continues to make great progress.According to his school he is a straight " A " student.  According to his most recent IEP progress report, he has mastered thirty-five out of thirty-nine objectives in only two months!  (okay I'm being facetious.  I think my son is smart and has come a long way, but I find his IEP report a prevarication of truth)  But this is a different argument for a different day!

I asked my son once why he stims, and he said, " because I love it! "   For now, I think I just have to learn to cope with it until I find the answer as to why.  All in all, there are so many things we have to think about concerning our children that we need to prioritize our concerns.  At this point for my son, I am more concerned with his asthma and immune issues.

Your daughter should be given the accommodation of more time for her tests since it is part of her disability that keeps her from being faster.  I think the stimming may be helping her to process what she reads.  Using her finger to follow the words is a great idea because it gives her redirection and a substitute for the less desirable behavior.  Using her finger is " tactile. "

Does she use an overlay?  We couldn't afford the official ones, so I went to Wal-Mart and bought a package of colored, transparent dividers.  I cut them and tested him to see which one made him more able to read.  The blue one worked for him, and he uses it every day.  Sometimes our kids have visual distortions that make it difficult to process print and reading.  Visual and auditory distortions can be a cause of stims because the distortions can cause anxiety.  (So do time limits on tests for all of us!)

My son's former aide used to punish him for stimming, and if he took longer to complete and assignment, she would deny him snacks and breaks.  I put a stop to this.   This is just my opinion on it because we truly don't know how much of it is within the power of the child to control neurologically.

Haven

[Guest guest]

>

> ... The kids in her class have taken her under their wings and just love her,

but that will not be the case in the future because of her social issues. That's

her biggest probem. Repeating, and not being able to have " normal " kid

converstations and not intiating play and  doing this repetitive finger thing

beside her eye when she's excited. I know that soon, there will be some kid

who decides to ask her why she does her finger thing or why she's " odd " and then

I guess I will have to change my story- UGH! I would love to hear how other

parents have dealt with this issue!

I sure can't claim to have all the answers, but I can tell you this played out

for our 15yo son with Asperger. We kept working on the stimming, lots of

talking, but I really think it was something he had to work out himself. We

paid attention to it and talked to him about stopping, but never forcefully

stopped him, tried to be tolerant. We tried to let him quit as he was ready.

We chose one thing in particular to especially focus on, as it was very socially

damaging. And that was the first thing he quit, gradually, by the middle of

elementary school. I think it helped to draw his attention to it and encourage

him to quit. By the end of 8th grade, he had pretty much quit all the various

stimming that was socially unacceptable (still bounces his leg), gotten to where

he could have normal conversations and had started to figure out how to make

friends. Part of the picture was a school that was very relaxed with him, which

we just lucked into. They were bad at some things, but keeping his stress

levels down was one thing they were good at. I think this enabled him to relax

enough to think more about what he was doing in lots of ways and on lots of

levels. At least in his case, I think it was a matter of providing at least

some social skills training (I'm not sure it has to be tons) and giving him the

space to figure things out his own way. Different kids may be different. But I

guess what I'm saying is that it seems it may mostly be a matter of working with

your child, but at the same time realizing this is a long term thing and not

driving yourself crazy expecting immediate results. I'm not sure it is possible

for them to not have at least a few rough years in the middle school years--kind

of part of the package. But if you work with them, they will make it through it

to a better place.

[Guest guest]

Thank you I needed this one.

mom to sam 8

Subject: Telling child about AutismTo: "Autism List" <Texas-Autism-Advocacy >Date: Friday, January 22, 2010, 2:13 PM

kid who decides to ask her why she does her finger thing or why she's "odd" and then I guess I will have to change my story- UGH! I would love to hear how other parents have dealt with this issue!

Hmmm, tricky one.

You might want to ask the teacher if you can make a presentation to the class when your daughter isn’t there—that has made a wonderful beneficial difference in my son’s classes.

My son is 11 and fairly integrated in the community (general ed 5th classroom with no aide or curriculum modifications, sings in choir at church. . . .playing on a typical basketball team (albeit 4th graders) ) and I have a younger daughter. For the record, he had no functional language at 3 years old and had a classic autism Dx from several credible professionals in town.

Personally I thinks it’s better for the parent to say something in response to the child’s question rather than taking it upon themselves to ‘disclose’ to their child. Before my son was really realized he had “autism†some horrible drama teacher at Main Street theater in Houston embarrassed me by asking me rudely in front of him and a group of waiting moms if he had autism before she kicked him out of the play (this was after I had been told that they would work with him. Don’t support Main street theater—they suck)

I’ve had to explain more to my younger daughter—why her brother has outbursts or can’t eat a lot of the foods we eat, etc.

A couple of years ago when I was doing a lot of advocacy, my then 9 year old son looked over my shoulder while I was at the computer and asked me if kids with autism were my hobby and why. This was the same year that he was in public school for the first time, so he was part of the day with other kids with autism who didn’t speak much in a self contained classroom and part of the day in general ed. And was becoming more aware of this.

I gently explained that he had autism. . .which led to his question of ‘what is autism?’ Then I pointed out some areas where he was having challenges with foods, friends, noises, calming himself down, etc. then I also pointed out some of his gifts from autism—the focus, the gift of fabulous hearing/sound discrimination, the memory. That autism gives him a unique way of looking at the world . . . .and he was satisfied with that answer.

I’ve been careful to try to set the expectation that autism is not to be used as an excuse not to try something new or to try his best at school or in the community.

A positive point is that understanding that is a sign of self awareness that shows maturity. ..however it’s tougher on his self esteem now because he still doesn’t have any friends—he has peer helpers and a circle of friends who look out for him, but no one who sees him on the weekends or invites him to b-day parties.

S.

"Here in America we are descended in blood and in spirit

from revolutionists and rebels - men and women

who dare to dissent from accepted doctrine.

As their heirs, may we never confuse honest

dissent with disloyal subversion. "Dwight D. Eisenhower