DISCLOSURE

Explaining the diagnosis to your child

According to experts, it is essential for parents to explain the diagnosis to their children. Oftentimes, this can help put children on a path to self-acceptance and can allow them the time to understand and ask questions. With no knowledge of their diagnosis, children with autism can often compare themselves to others and come to unfounded conclusions about themselves and their own well-being.

Children younger than 8 years old often do not think they are different from their peers, so the bigger picture of a developmental disorder may be too complex for them to understand.

When talking to your child, remember to use age appropriate words and to think about it from their perspective, in order to improve the communication between the two of you. It can help to talk to your child about being an individual and explain that differences exist between all people. Using play, and sometimes books, can also help children with autism to better understand themselves and their diagnosis. Be sure to emphasize your child’s strengths as well as their areas of challenge. It is helpful to point out that everyone has areas of strength and weakness.

Telling your child

In the piece below, clinical psychologist Lauren Elder, Ph.D., shares suggestions for how to tell your child about their diagnosis.

Sharing your child’s diagnosis with your child is a difficult situation shared by many parents. Children need to understand what’s going on, but the discussion needs to be appropriate for their age and level of development. Your openness will help your child feel comfortable coming to you with questions. I recommend a series of ongoing conversations rather than a one-time discussion. Here are some tips for starting the conversation and preparing some answers for questions that your child may ask:

Explain autism in terms of your child’s strengths and weaknesses. You may want to focus on what they are good at, and then discuss what’s difficult for them. You can explain that their diagnostic evaluation provided important information on how to use their strengths to meet their challenges. Focus on how everyone has strengths as well as weaknesses. Give some examples for yourself, their siblings and other people they know.

Provide basic information about autism. Depending on your child’s maturity and understanding, you may want to continue by talking about what autism means. You want to give your child a positive but realistic picture.

It may help your child to hear that autism is common and that there are many children like them. This can open a discussion about the strengths and challenges that many children with autism share. You might likewise discuss how individuals with autism tend to differ from other children.

For instance, you might explain that many children with autism are very good at remembering things. Some excel at building things or at math. Also explain that many children with autism have difficulty making friends and communicating with other people.

Don’t make everything about autism. It’s important to emphasize that your child's autism-related strengths and challenges are just part of who they are and why you love them. Be sure to point out some of those special qualities that have nothing to do with autism. This will help your child understand that autism is something that they have, not the sum total of who they are.

Assure your child of support. Explain to your child why they are receiving the services they are getting. For instance, you could tell them that they see a speech therapist to help them communicate more clearly, or that they're seeing a behavioral therapist to improve how they make friends. Help them understand how you, their therapists and teachers all want to help them. You can point out that we all need some help to become the best we can be. Some children need extra help learning to read. Some get very sad and need help in that department, etc.

Expect to repeat these conversations! All children – and especially those with autism – need to hear some information multiple times. This doesn’t mean they don't understand what you’ve told them. Rather, revisiting these topics can be an important part of their processing the information.

Find role models and peers. It’s important for children with autism to spend time with typically developing peers. However, for children your child’s age and older, it can be a wonderful experience to spend time with other children on the autism spectrum. Consider enrolling your child in a play group or social skills group specifically for children with autism.

Your child should be the one to decide if they want their diagnosis disclosed and how. If as a family you do choose to share with others, be sure your child is part of the process.

Telling peers

Talking with peers and other students is crucial to helping an autistic child become more comfortable in school or social settings. It is important to involve your child in these discussions to the greatest extent possible.

Making peers aware of your child’s autism and helping them understand the reasons behind their sometimes different behavior will increase acceptance and limit bullying. It is important to explain autism to children in a way that will help them understand their friend or classmate to the best extent possible. For example, talk about the fact that many of us have challenges. While one classmate might be unable to see and might need glasses as a result, this other child has trouble in social situations and needs support as a result. It may help to identify one or two peers who can serve as “buddies” to help your child feel more comfortable in school.

Stephen Shore developed a four-step process for disclosing autism, which he has found effective in a numberof settings. In essence, it’s a tool for placing a child’s autism in context and helping others to understand that autism is not a “handicap,” but rather a collection of strengths and challenges. Through accommodations and support, people with autism can not only succeed but can thrive.

Four Step Process for Disclosing Autism by Stephen Shore, Ed.D.

Start by delineating your child’s strengths and challenges. Use the word “challenges” instead of “weaknesses” because you can address challenges. If Joe’s been in class for a little while, a parent might say “Joey is very good at following the rules. When there’s a change in the schedule, though, you’ll see Joey get a little anxious."

Try to find a strength that your child uses to accommodate for a challenge. For example, during lecture parts of class, your child might use a computer to take notes. A parent might say “Joey finds that writing by hand is very tough, so this is how he takes notes."

Talk about other people’s characteristics to place your child in a broader context. A parent might say, “Joey has these strengths; other people have other strengths. We all try to build on our strengths to lead to productive lives."

Lastly, bring out the label. Explain that autism is a set of traits, strengths and challenges, and that doctors and scientists have identified these characteristics as autism.

Telling people

From Overcoming Autism by Lynn Kern Koegel, Ph.D. and Claire LaZebnik, 2014.

You should, you know. Tell people. You don’t have to walk up to strangers on the street or anything, but confide in the people who love you. That was one thing we did right: we told our families and our friends right away. First, we called them, and then we copied a good comprehensive article someone wrote about autism and annotated it with specifics about Andrew, and we mailed it out to everyone we knew. (You could do the same things with sections from this book, by the way.)

None of our good friends pulled away from us because our kid had autism. Just the opposite – our friends and families rallied around us in amazing ways and have continued to cheer Andrew’s progress on year after year. In all honesty, telling people what we were going through only made our lives easier.

Before then, we worried that Andrew’s occasionally aberrant behavior was off-putting. But once he had a formal diagnosis, everyone cut us a lot of slack, and instead of wondering what the hell was wrong with us as parents, most people we knew admitted to a newfound respect for us for dealing with so much.

Real friends don’t love you more for being successful or less for having problems. If anything, it works the opposite way – we’re all so busy that sometimes we forget to stay in touch with friends when everything’s fine for them, but we rush forward when they need us. Now is the time to take advantage of that. Talk your friends’ ears off, complain and moan to them. You’re dealing with a huge challenge; take advantage of every plus it has to offer.