Your Advice Requested: When Is the Right Time to Tell Your Child About His or Her Autism?
Saturday June 2, 2007
A reader writes:
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?? 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?My son, Tom (age ten) has NEVER asked why he is different! Early on, when he was first diagnosed, I started talking to him about autism - but it meant nothing to him. As he's gotten older, I've continued to bring it up, but it doesn't seem to sink in. He'll ask about the kids in his special needs class who act out or perseverate ("why does Joey get so angry?" "why does Johnny ALWAYS talk about Jimmy Neutron?") and I explain "it's because they have autism, like you!" Then I say something about differences and strengths - but by the time I'm done talking, he's stopped listening!
So what are your thoughts about when and how to help your child "get" autism? How important is it that they're able to truly grasp and articulate their diagnosis (or even grasp the fact that they are different in some way?
Comments
Hi Dad of Tom. I’m the mom who posted the comment above yours about my nine year old daughter w/ PDD-NOS. I suspect my daughter would act pretty much like your son when I bring up her diagnosis. If I talk about rather abstract subjects, she gets bored pretty quickly. I suspect autism talks are a lot like sex talks: you need to give info as your child asks for it, and they develop a complete picture over time and as they mature. I also suspect that after your son or my daughter has a really bad social encounter that angers or hurts them, they might be more open and ready to hear how the wiring in their brain gives them problems in relating to others. What do you think?
Susan,
My son is PDD-nos and like your daughter is high functioning- doesn’t quite get the abstract. My wife and I are always searching for support mechanisms- there is a lot more if he were to fall farther into the autism spectrum- do you have any suggestions- groups, websites, so on that have been helpful?
thanks,
Dave
Hi Dave. Thanks for your message. As for help with social situations, my daughter sees the school social worker for a couple of sessions a week, and at those small group sessions (w/ other kids with social difficulties), the social worker poses questions about encounters with friends, etc., and the kids might take turns offering how that encounter might be handled. (Example, Susie, what do you do when Bobby and you reach the swing at the same time and he won’t let go? Susie: Wrestle him for it and grind his face in the dirt? (HaHa) Then the social worker might then help the student to think of more constructive things to do, like go get a teacher’s help. (Often, for a child with poor social skills, that’s the only helpful answer.) Have you ever heard of a speaker named Richard Lavoie? Our special education PTA played a video he has out on helping kids with poor social skills. He recommends performing “social autopsies” with your child. When something goes wrong, sit them down & help them dissect what they did wrong in a calm, nonaccusatory manner. I frequently conduct the same social autopsy over and over again w/ my daughter. She doesn’t always like to share with others, but then is very upset when others won’t share with her. I try to help her understand the Golden Rule (treating others as you want to be treated; share with them and next time they’ll share with you, etc.) I think she’ll eventually get it, but with my daughter she needs to hear a lesson or reminder several times before she changes her behavior. Lastly, I was on the web the other day looking up books on autism and came across some social situations flash cards. I’m sorry I didn’t write it down, but I can tell you they exist. They probably would help you as a parent do with your child what the school social worker is doing with my daughter. Sigh. It’s so hard. As parents, we want to shield our kids from every unkind stare, snicker, etc. I reminded myself the other day, though, that I can recall being teased and hurt as a child (though I’m not learning disabled.) It’s a part of life, and it does toughen us up as we get through it. I’m not sure how your child’s disposition is, but mine has spunk and I think she’ll be okay. Hope this helps. Again, Richard Lavoie is terrific. –Susan
Hi,
My son has Asperger Syndrome and is very high functioning. I decided to bring up Asperger Syndrome even though he did not ask because I had read some online feedback from kids with autism that it is best to discuss it ASAP. He took the news just as Susan and Dave have reported. That is, until he was reaching for an explanation for his difficulties in math. Then he told us and his teachers that he could not do math because of his Asperger Syndrome. In fact, there is some truth there (executive function problems) but we then had a more concrete talk about AS and that it was not an excuse to do less than your very best. He is now quite interested in Asperger Syndrome and what it means–he told his penpal about it (Not sure what she made of it!) We got a little book from his social skills class about telling others about your autism. “Kids Booklet on Autism for Siblings and Peers” COSAC, The New Jersey Center for Outreach and Services for the Autism Community. www.njcosac.org
I am a parent of a child who started out severely autistic, but has progressed well through these years. I also have always used the A word
my son has asked why he’s different even though he does know the answer. we’ve always from the beginning said autism, left our books with autism written all over it.
for a child who is older, I would consider the aspects of the diagnoses that affects her every day life. if she is not asking too many questions, I may consider not telling the child unless there was a direct question. I instead would consider area’s most affected by the diagnoses, and offer tools to help. it isn’t just a diagnoses with in the spectrum that may result in few friends, many kids who are typical have this problem too. even if you did choose to tell her about her diagnoses, I wouldn’t until you can say “you know, you have something called this. but dad here has been reading of ways to help with this and that. would you like to try?” it’s really important when telling a child about autism, that you have a plan too of things that can help. at least it’s this way for my son. you can give him a statement and not have a full answer
and there is no such thing in his mind as there is no answer. my son cant express his issues well with peer relationships, I have to observe him to see what’s going on. I have to teach him the part of enjoyment of others and wanting to pay attention to their likes and dislikes, along with teaching why we all even want friends. we also work on his words, which his peers can hardly understand. my son wants friends, but really doesn’t know why he wants them. he can take them or leave them and it’s a real struggle to insist he really ‘does to’ want friends. if left up to him, having no friends is way easier 
he get’s social skills in school, but truly any and all aspects of autism is 24/7 and has to carry over into home, the store, grandma’s and uncle George’s.
so my over all suggestion would be problem solve, and offer tools. observe where the problems are. most kids need direction in many area’s and when it comes to social peers, this can be very hard for a kid on the spectrum. you could do role modeling, with her sister. walk through the steps of greetings and sharing and staying on topic.
RDI (relationship development intervention) is a parent based program and relatively quite easy to understand their concepts and implement them into everyday life learning skills. I have been doing this for years with my son. no program will take all issues away, but this is a great way to help. she also may have issues reading body language, which makes peer relationships fearful for kids. you could also help with that.
good luck
Hi, my son is 15 aspie. I always asked him if he wanted to know why he went to a special class. At first for about a year he said no. Then one day he said ” I don’t know” which means yes in his world. So I told him about aspergers. That was in 3rd grade. Now he is in 9th and wrote a paper about autism in health. My son never really acts interesed in alot unless it is he’s pokemon or other similar things. He probly never will, but he has that info. He will now tell people he has autism if he is having trouble somewhere and needs help.
Susan,
Thanks for the advice and recommendations. I was telling my wife how your post really was right on the money- the exact things you described as challenges are what we are going through with our son.
I’m checking out some of the resources and have visit Richard Lavoie’s website.
Thanks for the help,
Dave
Hi all,
I have read your postings with great interest. I have an 11 year old daughter (just turned in the summer) who started middle school yesterday. She has been diagnosed PDD NOS (HF), Aspergers, ADHD, Auditory Processing Disorders, and well, you all know the rest.
This is the first year she goes to a public school and today she asked me if she was Special Needs. It sort of floored me because I was not anticipating the question. I wondered when she was goign to start noticing certain differences, but I am not sure she has. She has previously attended private schools wheer the school was specifically for LD mostly but the transition to middle school was greater so we have placed her in the public school system. I am excited about the possibilities, but scared about how many things she is being exposed to that she totally does not understand, like special needs. I do not even think she has ever heard those words in that context. She has asked many times why she takes medication, why she has to go to therapy, why she cannot go to other classes, and I try to explain it the best way I can.
Many of the Special needs kids in her school also have physical handicaps, and some are also lower functioning . So she also sees herself very different from them as well. She’s sort of in the middle of both, and I feel that not one scenario is quite right for her sometimes.
Since her weaknesses are mostly social and abstract concepts, the socialization in middle school is going to be difficult enough, not to mention if she feels she is being labeled somehow.
I was searching on the web for some suggestions related to how I could explain this to her and what to say, and keep saying as she goes through this difficult transition through adolescence. This period of their lives is so difficult with any child, hormones and independence all at once, but in reality she is still a little girl in so many ways.
I enjoyed reading the experiences and would love to hear from anyone who can share any other similar experiences and suggestions. Thank You
Cristina
My son(9) fits some of the criteria in aspergers,and some in PDD, and his teachers are bringing up the facts of getting him diagnosed etc. well my husband is not hearing it at all. I am very confused but only want waht is best for my son. It’s nice to read your thoughts, I need to hear tha it is a do-able situation. I am waiting to hear from my son’s Ped. about even testing my son. But every thing just fits him so well. He’s very smart but doesn’t quite fit in, in class the kids say he’s so smart but really weird. I’m thinking of an IEP to start with, the school seems to be supportuve. I ‘m just worried that labeling him now will cause him problems in the future. Thank you all for ypur time and life lessons. Sarah