Telling Your Child About An ASD Diagnosis

Are you wondering how to tell, and when to tell, your child about an Autism Spectrum Disorder (ASD) diagnosis? The answer is simple but probably one of the least favorite responses you will ever get from a professional. The answer is … it depends.

There are so many factors to keep in mind when considering this issue. There are obvious factors, such as the child's age, developmental/intellectual abilities, and language levels to keep in mind, but there are also less-obvious, highly individualized factors to consider as well. For example, was your child diagnosed at a young age, maybe as early as 2 or 3 years of age? If so, interventions and special classes may have evolved into an expected part of life for your child (and your family). Or is your child 10 years old, having spent years struggling with school and social interactions, with a sense that something is different or feels something is "wrong" with him or her?

In the case of the very young child, discussions of individual differences in all people, as well as family members, can become an essential part of the family dialogue and the family identity. This approach is helpful to siblings as well as the child on the autism spectrum, and can develop in specificity over the course of the child's development. For an older and more intellectually able child, the situation is more complex. Parents are often understandably concerned about the distress that discussing the diagnosis may cause. Something to keep in mind is that for some older children, there can be relief at finally having an explanation of their difficulties. Of course, the child's level of language and intellectual ability should always be kept in mind. Overly specific and technical details may be frightening or simply not comprehensible.

The NBC television show, Parenthood, is an example of the potential landmines parents may face when discussing a diagnosis with their child, as well as some ways to recover from having one of those landmines explode. For those who are unfamiliar with the show, Parenthood includes a family with a son (Max) who is diagnosed with Asperger Syndrome as a school-aged child. In the referenced episode, Max finds out about his diagnosis because he overhears an argument between his father and uncle. When he then asks what this means, his parents trip over one another with conflicting messages, never having decided together how they will approach this discussion, and it does not end well for the child or the parents. Eventually, they consult a therapist who helps them develop a script that they can agree on when they re-approach their son for another try at having this discussion. For those who would like to find and watch the episode, it is entitled "Qualities and Difficulties" and was originally aired on March 1st, 2011.

The Parenthood episode highlights an essential piece of information that applies regardless of one's approach when the time comes: preparedness. Thinking about the issue, having a discussion with one's spouse or partner, and coming to agreement about what you wish to say can help to prevent the painful scenario played out on the television show.

Though it may be a difficult discussion to initiate, it is rarely a good idea to attempt to hide a diagnosis from your child. Many parents believe that sheltering a child from knowledge of a diagnosis may help protect their child. Hiding information leaves possibilities open for uncomfortable and potentially destructive ways for the child to learn about his or her differences in a way that is at best unhelpful, and at worst profoundly hurtful. It may also unintentionally give a message that you, the parent, are ashamed of your child - something no parent wishes to communicate. Hiding a diagnosis altogether is very different from making decisions about how much information to provide at particular points in time, however. Good decisions about how and when to provide or limit information are all based on helping your child to cope and go forth into the world to the best of his or her abilities.

As this is a very big topic that cannot be covered fully in a brief article, please refer to the websites listed below for specific information. All provide useful and thought-provoking information. One of them may provide the spark for you to create your own approach to making this ongoing conversation something that will not just lessen the potential for adding distress to a difficult situation, but actually strengthen family bonds and aid in coping for all involved.

Additional Resources:

• Getting Started: Introducing Your Child To His Or Her Diagnosis Of Autism Or Asperger Syndrome Marci Wheeler, Indiana University Bloomington
• When And How To Tell Your Child They Are On The Autism Spectrum
• ASD Diagnosis: What Do We Tell The Kids?, from the Interactive Autism Network
• Parenthood: Telling Your Child About Asperger's, from Thinking Person's Guide to Autism
• Telling Your Child They Have Autism
• Should You Tell Your Child About His/Her Autism Diagnosis?, from Stephen Shore, PhD, Autism Self-Advocate