"Is there something wrong with my brain?" | Autism PDD
I know I have posted about this before but it is a hard one for me:
My ds is 7 and has been coming home from school the last six month
saying "I think I am really different from other kids" . Yesterday in the car
he said "Mom, am I sick ? Is there something wrong with my brain?"
I am so glad that he has awareness and the skills to articulate it but I am
also heart-broken because these are heavy worries for a kid.
Over the last six month we have talked a lot about how people are
different, think different, feel different and I have acknowledged that he is
probably different from most kids but that there are other kids like him. I
have talked with him about how his brain is a smart healthy brain but
that it works in somewhat unusual ways and that some things might be
harder for him and other things easy. He has seemd happy with the
explanations and relieved that there is not a 'disease in his brain'.
But I have been really whimping out on giving this 'difference' a name.
Pdd-nos does not roll over the tongue easy and I do not like the disorder
part because I do not want him to think of himself as disordered. A whole
talk about what asd means and how it affects people in general and him
in particular seems to be way over the head of a seven year old - heck it
took me six month of intense reading to wrap my mind around half-way.
Are short but sweet answers like 'no you do not have a disease but your
brain works a little different' okay? Are the whimp-outs? Are they lies?
Should I sit him down and draw a rainbow and try to explain the autism
spectrum to him? I just feel so paralyzed by not wanting to do this wrong.
Hmmm, NorwayMom will probably have some good sites for books on self awareness, I'd bet. My 2 cents in the meantime is for you to find the one really, really excellent thing he does.
Let's say he has an awesome rote memory. You can say "you have a super, excellent memory brain! So like we talked about, you might see things differently than other kids because they cant remember things as well as you. But there's some stuff your friends might be super at - like paying attention in school or being good talkers. You can help them get better at remembering, and they can help you be a better talker.
Think about how good Daddy's spaghetti is - he makes the best spaghett in the world. But, he forgets where he puts his car keys alot, huh? And Mom always remembers to pack your backpack and iron your shirts for school, but I'm also not very good at art.
I have a gifted NT kid, 4 1/2, that's been going to Cole's elementary school for gifted enrichment since he was 3. He also went to preK a couple days per week. I told Jack he was going to "speech" class instead of gifted class. He knows Cole does 1st grade and "speech" (special ed) because Cole's not that great a talker. We told Jack they also have class for kids who are "great" talkers.
I gave the boys the talk about how Cole is not so great at speaking with others, but he can remember stories really well, can read and use the computer well. Jack, I point out, cannot read yet but is an excellent talker.
Don't know if this is any help at all, but explaining things to a special ed child and a gifted child who are only 2 years apart in age has made me think about the same thing you are.
Look to hear from Norway Mom. She has great advice and links.
PDD is autism the whole spectrum is branches from the pdd tree
autism
asperegrs
Childhood Disintegrative Disorder
pdd/nos
rhetts syndrome
are all classed as being on the autistic spectrum
shell
it would be fait to tell your child he has autism because he does
pdd/nos has the same diagnostic criteria has asperger syndrome with a couple of the marked impairments not met
I can't wait for my 8 year old to ask me why he's different. i don't want to tell him til he asks. He knows he's different and that there are all sorts of people and all sorts of differences but we didn't get beyond that. I want to tell him he has asd and that he's acheived a lot. That it was much harder for him to learn to talk and to play and that he's acheived an amazing amount. That his areas of interest are so important to him because of his asd too. To point out his talents and his weakneses and just let him know all I know about it (although pdd-nos aint saying very much). It's the way he is and he should be very proud of himself. I'm also keen to find more autie kids like him to introduce them. I'm sure he'd benefit from knowing other spectrum kids like himself. His younger bro is also on the spectrum so i think he thinks having all the therapies and a bit of a stim here and there is standard practice. You son has a strong sense of being different and you may find that telling him he is and why will make him feel much better about himself.
It's a very personal decision. Good Luck.
This is a tough one. I can only tell you how I handle things. And time will tell if I have done it right. With my daughter who is ten, I just very non-chalantly tell her she she's different in some ways and that's a good thing. I praise her for the things that she is different about like for instance, she is not mean to other kids for things that they do that are not like everyone else. I tell her how wonderful it is that she has such a good heart. I praise her for her talent with drawing and when it comes to her difficulty with being accepted with friends, I tell her it is because she thinks differently than most kids and that they are not as mature as she is, which is really the truth. Kids on the spectrum don't get the social cues of picking on people and making fun because they are different. With my son he is only five and has no awareness yet. My daughter and he are going to the same elementary school this year and ride the same bus. She looks out for him and when he starts handflapping she engages him by holding his hands and playing because she doesn't want him to be made fun of. I think your son will take alot of cues from you and if you talk to him matter of factly, as if it is not a huge thing then maybe he will feel that it is not a huge thing either. Anyway, I know your struggles and my thoughts are with you.personally, I would treat it like all the hard questions kids ask. Give enough to satisfy his curoisity and answer his question, not so much he is confused, bewildered, or upset. I think the way you are doing it is the right way as long as he is satisfied with your answer and drops the subject. If he pushes then I would give more info. There will come a time as he gets older that that answer will no longer satisy and you will have to get more detailed, but if he isn't asking for details personally I wouldn't give them. I would not consider it lying at all. Nor sugar coating.micki, your child is searching for answers, if I were you i would use the word Autism, instead of pdd-nos,do you know any other kids with autism, you could use them to explain ,we have friends with children on the spectrum,and there are kids in daycare with the dx as well,my son loves numbers so i made a number line 1-10,I said to him "this line of no# is how much autism people have
Eg...Ricky is a 2,brad is a 8,you are a 4.He understood this,and it seamed to satisfy him,(for now)
I had to explain it somehow, after a play date in the park with a friend that is severely affected he had a lot of Questions ,why cant he talk?,why does he flap?,when I said his friend has Autism, he said well I have Autism ,why don't I do that.
Your son may know he has Autism,have you used the term around him?,It sounds as though he is really smart,If he has heard the term used in dr appointments ect,he needs to know . The rainbow sounds good to me.
Good luck,God bless ,Linda
Since LeAnne mentioned it, I'll provide a link to my resources on teaching kids about autism.
http://www.autism-pdd.net/forum/forum_posts.asp?TID=15359&am p;KW=teaching+kids
Under that topic there's a link to the social story I wrote to introduce my son to his diagnosis. I used the word autism in my social story, avoided the word disorder, and mentioned that even though he has some things in common with other people who have autism, he is totally unique, a "special edition."
I took a positive approach, emphasizing his strengths first, but I also described his challenges. Introducing him to his diagnosis in that way has had no negative consequences.
Since your son is worrying about his brain being diseased, having a label for his difference will most likely come as a relief.
Good luck with everything.
Technically, ASD disorders aren't "diseases" anyway, so to say his brain works in unusual ways is actually pretty accurate. It's important not to lie or sugar coat it, and I think you're doing a wonderful job. He obviously knows he's different, so why pretend he's not? The important thing is letting him and all his friends know that "different" doesn't equal "diseased," "wrong," or "bad". Focus on his strengths and use them to boost his self-esteem. You're both lucky that ASD disorders are so widely recognized in this day in age, otherwise he would just feel different and there would be no explanation for it, which is where bad labels can come in. I was called things like selfish, spoiled, bad, emotionally weak, and weird by my own family due to their ignorance about autism, so I guess you could look at it as a positive that there's a concrete name for it and that these "differences" so common to ASD people don't make them crazy or otherwise inherently flawed.
This is a wonderful learning experience for him..you can give him the correct answers before nt kids come up with their own to tell him. We always told Sarah she had autism albiet mild but autism and that she is so talented and smart unlike other kids because of it..reads anything since she was 3, plays over 20 songs on piano...draws incredible..these are talents most kids dont naturally have at her age..but she has trouble with talking and playing with kids and she knows this and we talk about how we are helping her get skills to do this better..she doesnt understand the different wiring in her brain yet but I like that description..maybe when she is older:) She gets told how smart and talented she is on a daily basis that she is going to be a egomaniac by time we get through with her:) She tells me now " I certainly am talented mama!" and " I cant believe how good I can do that!" now..with nt kids I would not let her boast herself this way but for Sarah I feel it will come in handy when the other kids try to judge her too harshly..she is in a league of her own..no connection to what peers her age are supposed to act like or play~or desire to fit in just yet. I think autism will always be apart of her life and much easier to digest it now then as a teen..she is fine with it and has no negatives about it because we always used the term as a strengh of hers and not what defines her as a human being:)
Best of luck!
I think all of the above are awesome suggestions. You could also look into getting a book, two that I think are great are:All Cats Have Aspergers (http://www.amazon.com/All-Cats-Have-Asperger-Syndrome/dp/18 43104814)
My Best Friend Will (http://www.amazon.com/Best-Friend-Will-Jamie-Lowell/dp/1931 282757/ref=sr_1_4/103-0899971-7944602?ie=UTF8&s=books&am p;qid=1188152999&sr=1-4)
My Best Friend Will is a great one, you can look inside it on Amazon.com. Even though they're more meant for siblings and peers, I think that they are great for our kids to read as well, because it explains in a positive, easy to understand way what autism is.
Good Luck!
Thanks for all your suggestions.
I have a few books for kids on autism though I think the are a little to
advanced for him ( 'Asperger Syndrome the universe and everything' by
Kenneth Hall; 'What autism means to me', by Caspian Banki and the two
mystery fiction stories by Kathy Hooperman 'Of mice and Aliens' &' Blue
bottle Mystery' an Asperger Adventure)
My ds was diagnosed the week of his seventh birthday and we are as new
to realizing that he is different then he is. I clearly want to tell him that he
has autism but I wanted to be sure first that I would know what it ment
and that I would be a 100 % okay with it. I really do not want to tell him
and start crying -that would be the worst. I feel like I know enough and I
am fine with it and he is ready to now. I have brought it up to a few
relatives and keep hearing 'Why would you tell him, it would be
devastating to his self-esteem" which tells me that they still view his
autism as something negative.
But I agree with you -it is important he knows. I might do the idea with
the numbers - he loves numbers. He will probably try and talk me into
letting him be a four on the 'autism scale', since four is his current
favorite number.WOw he was dx very recently. I'd wait til the emotional edge has warn off for you and you've spoken about autism enough times to feel comfy with the subject. Most mom's have had a good few years living with the autie dx before telling their kids about it, so when they do, it really does just roll off the tongue. Good luck with whatever you choose to do. When my mom and dad told me i was autistic they were very matter of fact about it and didnt see the point of hiding it from me as i already knew something was up and felt that would be doing me a diservice and told me flat out and were always honest witrh me which i respected very much they told me very tenderley as well.
after i was dxed it really didnt effect me in any majoir way at the age of 8 i just went about my life an 8 year old is too young to worry or put serious thought into something like ASD.
i know that my perspective might be a little different from the other posters but i really think you should tell him as soon as you can because from my interpretation of your post hes already starting to figure out somethings up.
and we dont want him to start thinking bad things about himself we want him to have the answers he seeks and i think it would be best not to wait to long to give him those answers or he may resent you when he grows older because of it
( to this day im glad my mom and dad told me straight out i would not have enjoyed them hiding such important information from me about autism and how it affects my identity and personality)
and he may not be thinking good things about himself when hes by himself when youre not around
because he dosent know what he has and how it makes him special and if hes calling it a disease in his brain that means hes jumping to negative conclusions about it
autism can be negative but there are several postives about it as well.
i would tell him gently and explain it to him thorough a picture book
autism is just as much of a different way of being as it is a disability and in my point of view to put off saying something for too long.
can be like telling a child of another ethnicity that there skin color is the same as everyone elses claerly not true as you can tell the difference.
becuase the world is made up of different races, ethnicities and diversities that all desrve special recognition.
and if he is of a special group or diversity i think its important he knows i personally say when i find someone being negative about autism
Wouldent it be boring if we were all the same?
or "god dosent make mistakes he makes everyone special"
or another quote i heard from the man whos life was the inspiration for the movie rainman
"you dont have to have a disability to be different everyones different "
just remember to celebrate who he the person is
dont celebrate the disabitity exsclusivly though.
too many autistic adults act like there is no way to seperate autism and the person this is not true i have found.
i am more or less a neurotypical person with challenges not a completley autistic being
and autism does not define who you are 100% it is important to for him to know about but does not determine where you go or what you do in life
there are MANY famous people who are thought to have autism or aspergers and amounted to plenty in life
and be very happy successfull individuals 
temple grandin is a fine example as is albert einstein who was though to have asd himself.
my advice to you is tell him nicely and sweetly as you can as this will probably be a delecate moment he will remember his whole life and will be a special moment between the 2 of you.
but let him know that he can still do whatever he wants in life and it is just another thing that makes him so special and wonderfull.
I'm planning on buying an ABC book that focuses on the strengths of kids with HFA/Aspergers. It's called "I'm Utterly Unique" (Letter U). "Detail Detective" (Letter D) is another example. Four out of four Amazon reviewers gave it 5 stars.
I'm also considering buying "Different Like Me: My book of Autism Heroes," but it has too much text per page for my son's current level of development.
I'm also considering buying "Different Like Me: My book of Autism Heroes," but it has too much text per page for my son's current level of development.
believe it or not i actully saw that in a borders book store a few months back and was reading it and i had actully felt very sad readng it becuase stuff like that wasnt around back in 1994 when i was dxed.
and id felt while reading it that if books like these had been around i wouldent have been teased as much
when i was little
awarness in the early 90s was no where near where it is now alot of asders back then who are young adults now had it very hard
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