Whether I diagnose a child with ADHD, a learning disability, or Autism Spectrum Disorder (ASD), one concern that every parent has is how to discuss a new diagnosis with their child. As I sit with the parents to discuss their child's diagnosis the conversation invariably turns to "when, where, why, and how" are the best ways to tell a child about his/her unique differences... without sending a message that there is something "wrong" with him or her?
WHY YOU SHOULD TELL YOUR CHILD
Some parents may feel that if they don't tell their child that he/she has ASD or ADHD, they will not subject the child to feeling different, inferior, or responsible for the disorder. However, the truth is that even from an early age, children notice how they are different from others and wonder why they have a harder time paying attention, learning, making friends, or are more sensitive to certain things in comparison to their peers. They don’t have to be told that something is different about them, they know that something is different about them. But without knowledge of what causes it, a child may come up with illogical explanations for things that are much harsher than the reality. I once had an 8 year-old boy tell me that the reason he had difficulty making and keeping friends was because he didn’t wear the right kind of pants! Imagine if he had continued to go through life thinking that the secret to friendship was a particular color and brand of pants?
Without knowing the true reasons for their differences often children resort to blaming themselves; thinking that they are “bad” or “lazy” or "stupid." Having a name and explanation for why they are different can go a long way towards easing the anxiety and guilt a child might feel for being different. Also, knowing that they are not alone and that other people experience the same difficulties helps the child feel they aren't really alone in their experiences. Finally, it is inevitable that your child will hear about ASD, learning disabilities, or ADHD from someone outside of their family and the chances of it reflecting the positive aspects of your child’s disorder are much lower than if he/she hears it from you. Do you really want the first time your child hears the term “autistic” to be from a peer who is using it in a pejorative manner?
HOW and WHEN
While it is important to explain a diagnosis to a child, this does not mean you should sit down and start talking with your newly-diagnosed 3 year-old about how his ASD causes him to have difficulty with social reciprocity, display stereotypical behaviors, and have poor perspective-taking. Unfortunately, there are no hard and fast guidelines about when a child will be most receptive to information about differences in his/her behavior. It’s a balancing act: start too early and the child will likely be confused; start too late, and the child might feel resentful that you withheld the information or failed to provide an explanation for their obvious differences. Information must be tailored to the child’s developmental level, use vocabulary he/she is familiar with, and provide explanations and examples the child can relate to. But I believe this is a conversation that must happen. We have had several adult patients come to us for diagnoses because they are seeking answers for why they are the way they are, and that they've known something was "off" since childhood. Several noted that their parents later stated they knew something was wrong but didn't want to tell them for fear of upsetting them. I had one adult patient ask, rhetorically, "Why would they (his parents) hide something this important from me?"
Having seen both ends of this dilemma, we encourage parents to be open and frank with their children about their diagnosis, and add to the discussion often in a supportive and positive manner.
So let's look at how to approach this discussion based on the child's age.
Developmentally, preschool age children are just starting to become aware that other people may have a different perspective; in children with ASD or ADHD, this awareness may not come until kindergarten or the early elementary years. For all children, preschool is an important time to introduce the concept of how people can be different by talking about obvious physical characteristics: Daddy is tall, Mommy wears glasses, the child next door has blue eyes.
You can then progress to more complex ideas, such as that people can be good at different things; Bobby is good at singing while Suzy is good at art. This creates a positive attitude towards differences and paves the way for more discussions (later on) about how the child’s diagnosis makes him/her unique. One caution: if your child has ADHD or ASD, they have difficulty understanding the difference between a positive comment (Sally has beautiful eyes) and a hurtful one (Jimmy is really fat). You should explain to him/her that it is impolite to discuss differences about strangers in public and any discussions about how people are different should only be with parents.
Once children reach elementary school, they start to pick up on how they may be different from their peers. Often parents will be faced with questions such as “Why can’t I…?” or “What is wrong with me?” This is a good opportunity to discuss with the child how they perceive themselves as different and explore more information about the topic. Many parents and children find the use of developmentally-appropriate books or videos (see our list below) a good way to start a discussion. This introduces the child to the topic without providing overly-complicated explanations or overwhelming them with too much information. Allow your child to lead the discussion and use his/her questions to guide you in what information you present.
Just like adults, children can only absorb so much information at once and giving your child a 20 minute overview of the neurological basis of ADHD or ASD is likely to result in more confusion than understanding. You can always go back and provide additional information if your child has questions.
So what do you do if you introduce the topic and your child clams up or claims to have absolutely no interest? Simply tell him/her that you are going to be researching the topic and you would like to share the information.
Around age 11 or 12, children become very sensitive about any differences they have and this continues until the late teens. You may find yourself walking on a tightrope, worrying about the possibility of offending your child by pointing out difficulties with social skills, learning, or attention/concentration versus withholding information about him/her. Adolescents want to blend in and any suggestion that they do not is grounds for an emotional outbursts or sullen glances. Your child may be very aware of being different, but finds it too painful to think about or discuss. In these situations, do not force the topic. Sometimes leaving teen-focused pamphlets, brochures, or books lying around can provide the incentive for further explanation. I’ve known a few parents who have “accidentally” left a webpage for teens with ADHD or ASD open so that when the child turns the computer on, it automatically pops up. If your child comments about difficulty with social skills, learning, or attention, you might gently prompt, “Do you want to talk about that?” Or, “would you like to explore that further together?” When your child starts to ask questions about how he/she is different or makes comments that are related to his/her diagnosis, it is usually an indication that they are emotionally ready for information.
Teens greatly benefit from being able to meet or talk with people who have the same diagnosis. There are many good forums and websites for teens with ADHD and ASD, as well as local support groups. Like any other computer activity, you should monitor your child’s use (at least know what websites they are using and check them out for yourself). While the internet provides a way for the child to connect with others with the same difficulties and lessens the sense of social isolation, not all websites contain accurate information. Particularly with socially naïve teens, they may be unaware of warning signs of a predator.
I strongly encourage all parents to limit internet use to common areas of the household where the teen can be observed. I also encourage parents to install parental control software on all devices the child uses on a regular basis.
Although this blog post deals primarily with disclosing a diagnosis to the affected child, it is also important to discuss the diagnosis with siblings or other close family members. If your child is diagnosed during the preschool or early elementary years, you may want to briefly talk to his/her classmates about what to expect behaviorally (e.g. easily overwhelmed by loud noises, bright lights, touch; difficulty remaining seated and excessive talking).
There are several websites (Resources Kit for Kids; Autism KId's Book (PDF); How To Explain Autism To Typical Kids and Lots of Others While You're at it) that provide resources and tips for talking about ASD with the child’s classmates. Or, you can be creative and come up with your own explanation. One mother compared her child’s ASD as being a “hair dryer kid in a toaster oven world.”
TIPS AND POINTERS
Have a good understanding of the diagnosis. It is extremely difficult to explain something that you don’t understand yourself. Don't be afraid to ask your neuropsychologist to explain concepts if you don't understand something.
Be prepared for questions. While it is impossible to anticipate every question your child might ask, you should at least have an explanation for the following:
What caused this? Did I cause this?
Will it go away or will I outgrow it?
Will others be able to tell?
What can I do to make it better?
Does this mean I’m bad/lazy/stupid?
Write down important key points. Many children with ASD are visual learners and kids with ADHD often may not remember what you have said a few minutes later. So write things down for them.
Avoid having discussions or introducing the topic of a diagnosis during stressful or busy times.
Focus on the positive, then move on to any negative experiences child has had. In an article posted at https://iancommunity.org, the authors provided the following example of how to begin a conversation with a child about an ASD diagnosis:
"Doctor X told us that you have an Autism Spectrum Disorder. That just means that your brain works a little differently than most people’s do. Because of that, some things are harder for you, but some things are easier. You know how you can remember every single thing about Pokemon? Not everybody can do that. People with ASD often have great memories, and are very excited about things that interest them, just like you. Isn’t that cool? I love that about you!" (At this point, you can mention other things you love about your child, ASD related or not, like her smile or her sense of curiosity.)
But some parts of having an ASD are not so great. You know how sometimes you don't understand why the kids at school do the stuff they do? And how you've been having those meltdowns in class, and getting into so much trouble? Those things are actually part of having an ASD. People with ASD have a hard time understanding what other people want, and what they're thinking. A lot of kids with ASD can lose control when they are getting upset, and have a meltdown, too. So, it’s not your fault that these things are hard for you. They are hard because you have an ASD. And we're going to help you with those things."
Parent workbooks for disclosing diagnoses:
ASD: What Does It Mean to Me? A Workbook Explaining Self Awareness and Life Lessons to the Child or Youth with High Functioning ASD or Aspergers. Catherine Faherty and Gary B Mesibov
ASD websites for kids and teens
www.teachmeaboutASD.com: Provides developmentally-appropriate explanations of what ASD is for pre-schoolers to mid-elementary. Includes clips from Sesame Street. Also includes caregiver resources.
www.wrongplanet.net: Check under “forums” for Kids Crater and Adolescent ASD, which provide a place for kids/teens to interface with same-age peers.
http://autism.sesamestreet.org/: Intended for children 2-5 and parents, this website features Sesame Street videos revolving around Julia, a child with ASD.
http://www.aspergerteens.com/: This website was created by a teen who has Asperger’s Syndrome with the intention of helping and supporting other teens with the diagnosis. Included on the Web site are his/her own personal story, information about AS, and advice on dealing with social situations.
www.udel.edu/bkirby/asperger: This web site includes information and resources on ASD, a chat room/message board, and “KIDS’ CORNER” which was designed especially for teens and kids with ASD
http://gareth25.supanet.com/flash.html: This Web site is maintained by a teen who has ASD. It includes a positive perspective on ASD as well as tips to help deal with some of the challenges associated with ASD.
ADHD websites for kids:
(A good resource for teens with ADHD, with a free downloadable guide. A little lengthy, but full of information.)
(Answers questions about how ADHD will impact teens in school and with their peers.)
Books for explaining ASD to children by developmental level:
Pre-school to 3rd grade:
ASD Is...? Ymkje Wideman-van der Laan
Ian's Walk: A Story about ASD. Laurie Lears (Good for explaining ASD to siblings)
Can I tell you about ASD? A guide for friends, family and professionals. Jude Welton (Adaptable for many ages and includes section for parents)
Can I tell you about Asperger Syndrome: A guide for friends and family. Jude Welton
Different Like Me: My Book of ASD Heroes. Jennifer Elder
Autistic Planet. Jennifer Elder
Finding Out About Asperger Syndrome, High-Functioning ASD and PDD. G Gerland
Asperger Syndrome, the universe and everything. Kenneth Hall
The Asperkid's (Secret) Book of Social Rules: The Handbook of Not-So-Obvious
Social Guidelines for Tweens and Teens with Asperger Syndrome. Jennifer Cook O'Toole
Freaks, geeks and Asperger Syndrome: A user guide to adolescence. Luke Jackson
Books explaining ADHD by developmental level:
A Walk in the Rain with a Brain. Ned Hallowell
Terrific Teddy's Excessive Energy. Jim Forgan
Baxter turns down his buzz. James Foley
Pay Attention, Emily Brown. Linda Burton
Mrs. Gorski, I Think I Have The Wiggle Fidgets. Barbara Esham
My mouth is a volcano. Julia Cook
Learning To Slow Down & Pay Attention: A Book for Kids About ADHD. Kathleen G. Nadeau
Shelley, the Hyperactive Turtle. Deborah M. Moss
Cory Stories: A Kid’s Book About Living with ADHD. Jeanne Krauss and Whitney Martin
The Survival Guide for Kids with ADHD. John Taylor
Putting on the Brakes: Understanding and Taking Control of Your ADD or ADHD.
Patricia Quinn and Judith Stern
A Bird’s Eye View of Life with ADHD and EFD: Ten Years Later. Alex Zeigler and Chris Dendy