"Mom and Dad, Do Am I Autistic?" When, Why and How to Discuss Diagnosis with Your Children.
As a child psychologist working in the field of autism, I often get asked by parents whether or not they should tell their children about their diagnosis. My answer is almost always an emphatic “Yes”.
Why should I tell my child that he is on the spectrum?
Becoming aware of a diagnosis of autism can be helpful for children in a number of ways including:
A diagnosis helps children to make sense of their autism-related anxiety and frustration. The world can be a scary and confusing place for a child on the spectrum. Senses are constantly bombarded, events and expectations seem to change at a whim, and attempts at social interaction are often met with outright rejection. Awareness of diagnosis can help a child to understand how these and other challenges are related to autism. This is a necessary first step for coping.
A diagnosis counters a negative self-image. Over time, a child on the spectrum may interpret her challenges as a sign that she is deficient in some way. A diagnosis helps a child to know that there is nothing inherently “wrong” or “bad” about herself. In addition, a diagnosis (when explained holistically) can help a child to balance awareness of needs with an awareness of strengths.
A diagnosis can help an autistic child to feel less isolated. Neurotypical peers do not experience the world in the same way as the autistic child. This can leave the autistic child feeling misunderstood and lonely. Awareness of a diagnosis can help autistic children to connect with peers who share their experience as well as to derive inspiration from autistic role-models.
When should I tell my child that she is autistic?
The earlier the better. However, there are some factors to consider about exactly when. Age is one of those factors. Ideally, a child should be able to process the concept of a diagnosis and the key information surrounding it. If your child is not yet ready for the full discussion you can still talk about the challenges he is facing-but leave out the diagnostic terms.
Also consider the clarity of the diagnosis. If you are in the earlier stages of assessment or if the clinical picture is still evolving then information can be shared as it becomes clearer.
Fortunately for us, a child usually lets us know when it’s time. Questions inevitably arise and the child may begin to express feelings of being different without knowing why. These questions and statements provide the perfect opportunity to start the conversation.
How should I explain the diagnosis?
There is no single script for revealing a diagnosis of autism to a child. The words used have to be the parent’s own and will vary from situation to situation. However, there are some valuable concepts to cover that can help make the experience an empowering one including:
Autism is a diverse condition. Autism affects people in many different ways and no two people are impacted in exactly the same way. Knowing this will help a child to keep a sense of individual identity and will prevent him from making prejudgments about how his autism “should be”.
Autism is an important part of who you are but it is not the only part of who you are. No person should be fully defined by a diagnosis. Your child can learn that there are many aspects to who she is as a person and that many of these aspects exist outside of her autism.
Autism has its challenges. Don’t sugarcoat the challenges associated with autism. Your child should learn where some of these challenges lie. For example, you can discuss sensory sensitivities, some of the difficulties associated with socializing, and why change and transition can be difficult.
Autism has its strengths. Although autism comes with its challenges it also comes with a set of strengths including persistence, memory, attention to detail, and genuineness. Presenting this balanced view of autism will help your child to develop resilience.
Parents may have a number of concerns about sharing the diagnosis. Here are my responses to 3 common concerns.
“Won’t My Child Use the Diagnosis as an Excuse?”
Possibly. Children may try to avoid consequences for behavior even if it means blaming the diagnosis. However, when it comes to autism, many behaviors are unintentional and really ARE due to autism (especially autism-related anxiety and frustration). Although a child may try to pin more intentional behaviors on autism, I find that the use of this excuse doesn’t last very long if it is not reinforced.
“My Child is Going to Tell Everybody about His Diagnosis.”
Opinions vary on this topic ranging from “no one needs to know unless they absolutely have to” to “I don’t care if the whole world knows”. Although we would never want a child to feel shame because of a diagnosis, parents can discuss the pros and cons of telling particular classes of people (e.g. telling all children in general vs. telling close friends, telling family members vs. telling strangers, etc.) Over time, children will learn what works best for their situation.
“Knowing the Diagnosis is Going to Limit My Child.”
My response to this is: NOT knowing the diagnosis has more potential to limit your child. When your child does not know what is driving challenges in life it becomes difficult to face and overcome those challenges. By knowing the diagnosis, your child can begin to develop targeted strategies for overcoming adversity.
Conversations about diagnosis can be helpful for autistic children in a number of ways.
Children often let us know when it’s time to start the conversation by the questions they ask and the concerns they raise.
Explaining the diagnosis in an open, honest and balanced way can help to make the conversation an empowering experience.