ASD Diagnosis: What Do We Tell The Kids?

Teresa Foden
IAN Assistant Editor

Connie Anderson, Ph.D.
IAN Community Scientific Liaison

ian@kennedykrieger.org

Date Last Revised: January 8, 2014

Date Published: October 13, 2010

A child’s diagnosis of autism spectrum disorder (ASD) often comes after months or years of worry and a long and painful search for answers. Receiving that final, official word can be very hard, even if a parent expected the diagnosis, or fought fiercely for the evaluation that led to it. Parents may grieve over the loss of the child and family they envisioned and worry about their child’s future. ¹ As they begin to regroup, learning how to navigate education, medical, and insurance systems, they may also wonder: When will we tell our child about this diagnosis? When will we tell his brothers and sisters? How  will we tell them?

Children and Teens With ASD: A Range of Circumstances

Each individual with ASD is different. Some are diagnosed at 2 and others at 12. Some are spending their day in a protected special education environment, and others are out in typical elementary, middle, or high school classrooms with some level of assistance, or none at all. Some are intellectually disabled, and some have IQs in the normal or even gifted range. ^{2 3} Regardless of intellect, emotional maturity generally lags behind that of typical peers. All of these factors, and more, will influence a parent’s decision about when to inform a child about the ASD diagnosis.

Age is, of course, a key factor. A preschooler clearly will not have the capacity to make sense out of “having ASD,” but what about a 10 year old or 15 year old? Parents will need to consider not just chronological age, but also mental age. A 15 year old with a mental age of 5 will likely not be ready to talk about ASD, while a 12 year old with a normal IQ may be more than ready.

If a child is diagnosed very young, there will be more time to decide about disclosure. After all, a very young child going through a diagnostic evaluation doesn’t really understand what that evaluation is about. An older child, on the other hand, especially one with no intellectual disability, knows he is being taken to the psychiatrist or whomever it may be. He also likely knows that there have been problems. He may have been bullied, suspended from school for a destructive meltdown, had trouble making friends, or otherwise lived through some incidents that made him feel bad. He may know family members are upset about him and his behavior. In a case like this, the child may desperately need an explanation. Often, a parent may decide to explain about ASD when a child asks “Why am I different?” or when a crisis, like having to leave a school, makes an explanation necessary.

Parents may fear that finding out about the ASD will be hard on their son or daughter. After all, the diagnosis was usually traumatic news for the parent. Some children can find the news upsetting, especially if they are very sensitive to any suggestion they are different from their peers. ⁴ However, the information can also come as a relief, as found by a group of researchers who interviewed 9 individuals with high-functioning ASD, aged 16 to 21. As might be expected, most reported having felt a sense of shock or disbelief when first informed of the diagnosis. Despite this, all had been able to incorporate the notion of “having ASD” into their identity by the time of the interview. Some shared that learning they were on the autism spectrum had suddenly made clear why so many things had been difficult, or why they had been treated differently. (They might have wondered why they were in a certain class, or why they had to go to certain therapies, for example.) It also provided a reason for their behavior they thought other people might understand. ⁵ The diagnosis could take away the notion that past problems had all been the result of some personal failing, replacing this with the notion of a legitimate condition that explained many challenges.

Considering the potential impact of the information, how can a parent best explain to a child that he or she has an ASD?

Delivering The News

Please note: Every child with ASD is different, and so all of the steps below will need to be adjusted according to a child’s situation and needs.

Before you begin, assess what your child already knows and is ready to hear. Doctors are advised to think about how much a patient understands, and what he or she can absorb or cope with, before delivering news that might be upsetting. ⁶ Similarly, you may want to get a sense of what your child already knows and how well he or she will be able to take in a discussion about ASD, on whatever level. You may want to seek input about this from others who know your child well: a spouse or partner, grandparent, teacher, or other trusted person.

Pitch the news at the right level. Prepare to explain ASD in terms your child can grasp. Too vague an explanation may not satisfy an inquisitive teenager, while too technical an explanation may confuse or frighten a child of any age. “Some people have a different way of thinking" ⁷ is a better way to begin a discussion about ASD than detailing psychiatric diagnostic criteria. If circumstances lead to a very early first discussion about your child’s differences, you may choose not to use the actual ASD label, waiting until the child’s understanding grows.

Be positive. In his well known book on Asperger's syndrome, Tony Attwood relates how he sets the tone when delivering a diagnosis to a child by announcing, "Congratulations! You have Asperger's syndrome!" ⁷ When sharing news of a diagnosis with your child, you will likewise want to keep things very positive. It’s also a good idea to choose a time when both you and your son or daughter are feeling good, and when you won’t be interrupted or distracted. (A day you are at your wit's end or your child is on edge would not be ideal.) ⁸

Tailor your explanation of ASD to your child's own situation. As you know, autism spectrum disorders involve problems with social understanding and communication, as well as restricted or repetitive behaviors and interests. ⁹ They often also involve a host of other issues, from tantrums to sensory sensitivity, but reciting these in an abstract way is not the best way to explain ASD to a child. Instead, relate ASD to your child's specific experience. Start with the positive, then address the negative, as discussed below.

Because it is based on your own child's situation, your explanation of ASD may not be complete at this point, but that's OK. You can fill in the gaps later. Your child can only absorb so much, and there will be plenty of time to explain other aspects and variations of ASD.

Begin with the positive aspects of ASD, as reflected in your child's wonderful self. Is your child really good at something? Knowledgeable about something? People with ASDs often have an incredible memory for detail, especially on their "special topic." They are often very honest with other people and say what they mean. They have unique perspectives and can be very insightful. They are often loving in a non-manipulative and straightforward way. It’s important to tell the child that you love all the "good stuff" about her, and you wouldn’t ever want her to change.

You could say something like: "Doctor So-and-So 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.)

*Or “autism” or “Asperger’s syndrome” or whatever fits your situation.

Move on to the negative, as your child has experienced it. Undoubtedly, your child has been struggling in some areas because of the ASD. He may have had meltdowns, been unable to focus and get school work done, had trouble with organization, or stimming, or an inability to block out noise. He may have been feeling isolated or sad because he finds it hard to make friends. He may have been feeling bad about himself because of such things, too.

Now is the time to state: "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."

Describe ASD as a different kind of disability. If the child understands the concept of “disability,” you might identify ASD as just a different kind of disability. People have a disability when something isn’t working quite right, and they need extra help because of it. For example, a person who is blind may need a seeing-eye dog. People with ASD have a different kind of disability. They can see just fine, but they have trouble with other things. Sometimes they get "stuck" on a behavior or topic, and they have a hard time understanding how other people think and feel – that’s why sometimes it’s hard to figure out what people want, or how to make friends. People with ASD need extra help with these things.

("The Sixth Sense," Carol Gray's program for explaining ASDs to general education students, takes this approach and can be adapted for use in talking to children with ASD or their siblings.¹⁰ )

A simpler alternative is to point out that all people have issues. All people have things they need help with. Does someone in the family have diabetes, asthma, dyslexia, a phobia, or any one of a million other conditions humans struggle with? Autism is just another one. Everybody has something.

Stress that you'll be there. You should emphasize that you and other family members, teachers and therapists, are going to stick by the child, supporting her as she works on things that are hard for her. You’ll encourage her when it's tough, and cheer when she has a success. You’ll celebrate the "good stuff" while helping with the "not-so-good stuff." Also, let her know that you realize she’ll have questions about the diagnosis, and that you’ll be there for those, too, whenever she might think of them.

Let the child know there are a lot of other people with ASDs in the world, both kids and adults. The child is definitely not alone, and it is important to let him know this. In fact, research shows that children participating in social skills groups benefit as much, if not more, from meeting other children with ASD and feeling understood as they do from the social skills training.¹¹ If you think your child might benefit, seek out a support group, or a social skills group, in your area. You may be able to start a support group of your own, if there isn't one, or persuade a local professional (such as a speech and language therapist or psychologist) to begin a social skills group.

Some children will react fairly well to learning of their ASD diagnosis, but what do you do if your child feels upset or anxious about the news? In addition to making sure the child knows you’re available if he has questions, you might provide extra encouragement, extra love, and also extra “down time” so he can soothe himself with a favorite activity. You might also let others, such as grandparents, teachers or therapy providers, know the child needs some tender loving care at this time. An older child might be permitted to ask the person who made the diagnosis his questions directly. Some children will be avoidant, not wanting to hear any more about it, which is fine, but others will be seeking information. ⁵ If your child is in the latter category, you might make use of an age-appropriate book designed to help a child understand the diagnosis. (See the Resources listed at the bottom of this page.)

Keep in mind that the whole concept of “having an ASD” is a lot to take in. It’s going to be a process that takes some time, with new questions asked and deeper understanding gained as a child matures.

On The Subject of Siblings

Chances are that any siblings, even those who are quite young, already have a sense that something is going on with a brother or sister who has an ASD. They may feel embarrassed by their sibling’s behavior or mannerisms, frightened by their sibling's outbursts, or sad when their sibling won't play with them like other children do. They may sense their parents' worry about a brother or sister, they may worry about a stressed-out parent in turn, or they may feel conflicted about the enormous amount of attention, time, and money being devoted to the child with a disability. ¹²

Keeping them in the dark can leave them prone to arriving at their own, potentially scary conclusions: “My brother’s crazy” or “It’s my fault this is happening” or “I am responsible for taking care of my sister so nobody gets upset.” Experts recommend having a conversation with them about their sibling's autism early on. ¹³ This conversation will likely need to be repeated over the years as their understanding, concerns, and questions evolve.

For younger children, simply explaining puzzling behavior in the context of the child’s having a disability or being "a little different" may be enough. "Many people with autism like to look at things that spin around like that. Joey stares at the fan so long because he has autism." A slightly older sibling may have concerns that he may “catch” ASD, while a preteen or teenager may wonder how he can respond to peers who make insensitive comments or who tease him or his sibling with ASD.¹⁴ Even older siblings may wonder if they will be taking on the job of caring for a brother or sister at some point – a topic that should be discussed frankly. What are the plans for an affected person’s future? In what ways might a sibling expect to be involved in supporting the person with ASD into adulthood?

In many communities, there are support groups for siblings of children with ASD. These can be very helpful. Children who attend such groups learn they're not alone, and that their feelings and experiences are normal for a child in their situation. Not only do the children learn from each other, but also there is an adult facilitator leading the group who can offer insight into what is happening, and possible ways of handling the feelings and situations these children face. (See the Resources listed at the bottom of this page for information on sibling support groups.)

Conclusion

Sharing information about ASD in a positive, matter-of-fact, and age appropriate way helps set the stage for a child’s ability to understand, accept, and adapt to the reality of ASD in his or her life. A confident teen with ASD who can self-advocate and a compassionate sibling who helps others understand ASD whenever she runs into prejudice both probably started their journey with a sensitive, positive explanation of what it means to be a person on the autism spectrum.

Resources

• For support or social skills groups for a child or teen with ASD, check out the resource listings of the major autism advocacy organizations, such as:
  • Autism Speaks: Call 888-288-4762 or visit the Resource Listing.
  • Autism Society of America’s Autism Source (search under "related services") or contact your local ASA chapter.
• Sibshops: Support groups for siblings of children with special health care needs or developmental or mental health concerns.
• Adults with ASD: Deciding When to Disclose -- an article on how adults with ASD decide to tell others, such as colleges, employers, or friends, about their diagnosis.

There are a variety of books for children with ASD or their siblings that help explain the autism spectrum. These include titles like Different Like Me: My Book of Autism Heroes and All Cats Have Asperger's Syndrome. Search through online booksellers or ASD-focused publishers.

References

1. Wachtel, K., & Carter, A. S. (2008). Reaction to diagnosis and parenting styles among mothers of young children with ASDs. Autism, 12(5), 575-594. View Abstract
2. Interactive Autism Network Community. (2009, December 10). The autism spectrum: Variations on a theme. Retrieved October 11, 2010.
3. Interactive Autism Network Community. (2010, September 1). IAN back to school report 2010. Retrieved October 11, 2010.
4. Attwood, T. (1998). Frequently asked questions. In Asperger’s syndrome: A guide for parents and professionals (pp. 141-186). London: Jessica Kingsley Publishers.
5. Huws, J. C., & Jones, R. S. P. (2008). Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism. Journal of Intellectual & Developmental Disability 33(2), 99-107. View Abstract
6. Buckman, R., & Kason,Y. (1992). How to break bad news: A guide for health care professionals. Baltimore: Johns Hopkins University Press.
7. Attwood, T. (2007). The complete guide to Asperger's syndrome (p. 332). London: Jessica Kingsley Publishers.
8. National Autistic Society (U.K.). (2010, May 25). Diagnosis: Telling a child about their diagnosis. Retrieved October 11, 2010.
9. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., rev.). Washington, DC: Author.
10. Gray, C. (2002). The sixth sense II. Arlington, TX: Future Horizons, Inc. 
11. Barnhill, G., Cook, K. T., Tebbenkamp, K., & Myles, B. S. (2002). The effectiveness of social skills intervention targeting nonverbal communication for adolescents with Asperger syndrome and related pervasive developmental delays. Focus on Autism and Other Developmental Disorders, 17(2), 112-118. View Abstract
12. Autism Society of America. (2009, June 21). Sibling Issues. Retrieved October 11, 2010.
13. Goehner, A. L. (2007, December 24). Autistic kids: The sibling problem. Time. Retrieved October 11, 2010.
14. Aronson, S. (2009). Am I My Brother's Keeper? Challenges for the Siblings of Autistic Children. Journal of Infant, Child, and Adolescent Psychotherapy, 8(1), 49-56.