When and How to tell him.

My name is Tim and I am the father of a 12 y/o son who, though not professionally diagnosed, I am confident has Asperger's Syndrome. My question is when and how to talk with my son about him "having" AS. We have a very close relationship and I am confident that our communications will be successful however I do have a concern about NOT creating a cloud of depression over him. I am confident that he knows he is 'different' but as I stated, I do not want to bring about an onset of depression or feelings of inferiority, low(er) self esteem, etc. Thank you for your help and Thank God for the information and research you do and are providing via IAN.

I apologize for this [probably] being posted in the wrong area. Sorry. Didn't really know where the "general" everyday conversation went on.

Hi Tim. Welcome to IAN.

I think nearly every parent of a child on the autism spectrum comes to a point where they ask this question: Should I tell my child about his or her ASD? How do I do it?

I hope our readers will share their stories with you here. I know we've had some comments on this topic before. Some of what parents have shared include:

*The notion that you try to match your explanation to your child's understanding level.

*Two points where the conversation tends to take place: during a crisis (as in things aren't going well, the school situation is being changed, and the child is asking why) or when the child simply asks "Why am I different?"

*The notion that lots of people have some condition they need help with - autism is just another one of these (with examples from your family - does someone have diabetes? Asthma? etc.)

*The notion that autism spectrum disorders come with challenges, but gifts, too. (Is he really good at something? Knowledgeable about something? People with ASDs often have incredible memories for detail, especially on their "special topic." They are often very honest with other people and say what they mean.)

*Stressing that you'll be there -- plus his teachers, therapists or whoever is helping -- to support him as he works on things that are hard for him (for example, avoiding meltdowns or learning social skills).

*Stressing that you really love and like him as he is - you want to keep all the "good stuff" but help him with anything that's standing in his way.

*Letting him know there are a LOT of other people with ASDs in the world, both kids and adults. He is definitely not alone. (Research shows that kids in social skills groups benefit as much, if not more, from meeting other kids with ASD and feeling supported as they do from the social skills training.)

There are definitely books out there on the topic of explaining ASD to kids. You may want to check with the school guidance counselor, IEP chairperson, or special ed team -- they may have some you could borrow. There are also several publishers that put out a lot of books focused on autism or Asperger's at:

Autism Asperger Publishing Company: http://www.asperger.net/

Jessica Kingsley Publishers: http://www.jkp.com/catalogue/autism

Future Horizons: http://www.fhautism.com/

I recently attended an Autism Society of America event where a panel of teens with ASD answered questions for parents of younger children. They were asked this very question: when should we tell our kids? One of the boys with Asperger's said it had actually been a relief to be told about his autism because it explained why he had felt different at school, and why he had been having a hard time.

I hope our readers will add some other thoughts, and wish you well as you prepare for your talk with your son.

Connie,
Thank you for your reply and thank you, and all those that contribute to this sight. I am very grateful for having found it.

You are very welcome, Tim. Individuals with autism spectrum disorder, parents of children or adults with ASD, and now grandparents (since we've launched our Grandparents Survey) are all contributing so much to autism research and the autism community by their participation in IAN. Our goal is just to give something back to them to show our gratitude.

I have a 13yr old son with PDD NOS We have never told him he was different. one time when he was in 2nd grade and was not in the right school for him he was lying on the couch crying saying"why cant i do big boy things like other big bouys do?) I didnt know how to answer that and i dint. He just resently talked about that he is in special ed. He wantd to know if the high wchool had special ed. and what it was. again i had no answer for him In glenolden pa (delaware county) there is not one group or anything for children with ASD or support groups for parents. His social skills are not good, not good at all. he has not one friend, just me and my husband. so #1 how do i tell him he is different without breaking his heart, and 2nd where do we go for support and 3rd where can he go so he can socialize with other children like himself? Its just the 3 of us now. We have older children and 11 grandchildren (older kids 35yr,33yrs,31yr19yr-away at college) and none of our kids bother with vinnie like they are going to catch ASD or something!!! so the grandchildren are out of the question!! Where do we go frm here. This is my first time on your site i hope i am posting this in the proper place,, thank-you Lisa Mango

Hi Lisa, and welcome to IAN.

As you can see by the discussion in this forum, this question is asked by so many parents. (In fact, we are working on an article on this topic right now, which I hope will be ready for our next newsletter!)

How do you tell a child he or she has an ASD? It depends a great deal on developmental level and readiness. Often, a child is told when there is a crisis (and they have to change schools or life is otherwise disrupted) or when they are aware enough to ask: "Why am I different?" Especially in the latter case, you may find that the child finds it a relief to have an answer that makes sense.

Some of the suggestions we had listed before, but I will re-list here, are:

*The notion that you try to match your explanation to your child's understanding level.

*The notion that lots of people have some condition they need help with - autism is just another one of these (with examples from your family - does someone have diabetes? Asthma? etc.)

*The notion that autism spectrum disorders come with challenges, but gifts, too. (Is he really good at something? Knowledgeable about something? People with ASDs often have incredible memories for detail, especially on their "special topic." They are often very honest with other people and say what they mean.)

*Stressing that you'll be there -- plus his teachers, therapists or whoever is helping -- to support him as he works on things that are hard for him (for example, avoiding meltdowns or learning social skills).

*Stressing that you really love and like him as he is - you want to keep all the "good stuff" but help him with anything that's standing in his way.

*Letting him know there are a LOT of other people with ASDs in the world, both kids and adults. He is definitely not alone. (Research shows that kids in social skills groups benefit as much, if not more, from meeting other kids with ASD and feeling supported as they do from the social skills training.)

You were saying there is not a lot of support where you live. Still, it may be worth contacting the autism advocacy organizations to see if there is anything going on near you in terms of support groups or social skills groups.

For your local Autism Society of America chapter: http://www.autism-society.org/site/PageServer?pagename=community_chapters

The Autism Speaks' Autism Response Team helpline: 888-288-4762 (they have lists of resources and may be able to help)

Sometimes, a local speech therapist, psychologist, or other professional may run a social skills group. Ask your pediatrician or the school guidance counselor, school special ed chairperson, or school psychologist -- anyone who may know about what's going on with kids with ASD in your community, or even anyone who knows someone else who knows. Keep in mind, too, the possibility of being the person who starts the support group in your area.

One additional note: several of us here at IAN have teenagers with ASD who are in high school, so you can let your son know there definitely are teens with ASD and programs for teens with ASD in some high schools. (There are programs at college, too: an Office of Disability Services exists on most campuses.)

I hope this proves helpful, and do keep an eye out for our article on this topic. We hope to have it ready soon!

I have a 7 year old son. We have had discussions about symptoms as needed. He needs glasses and so do I. We have discussed that everyone has their own problems. Some people wear glasses and some wear contacts. Some people need other help. We have discussed he also has difficulty tracking when he's reading, so he needs to use something to track the words. He needs to take medicine to be able to focus better, and by talking about it, just as something we're helping him with, like glasses, I think he is better able to cognitively understand and take control of what is happening. He understands we have therapists who work with him, and, although we haven't specifically discussed it, I know he knows they help him deal with homework, being a good big brother, and talking with friends.

I don't know at what age he will understand everything, but I've tried to let it be a logical progression based on what he's doing and asking. I know he'll need to know by college, but it has seemed to me that as long as he is addressing his symptoms, he doesn't need to be burdened by knowledge of a diagnosis. I think he'll pick up on it, anyway. Not sure if this is right, but maybe it will help someone.

LegalMom, it sounds like you are handling the issue sensitively and beautifully.

We are working on an article for IAN Community called "ASD Diagnosis: What Do We Tell the Kids?," and hope that will be useful for parents making decisions about if, when, and how to discuss the ASD diagnosis with their children. It should be ready soon!