Sharing a diagnosis with family and friends

You are raising a child on the autism spectrum.  You know this, because you had an eval (finally!) and feel secure in your understanding of your child.  But how will you go about sharing a diagnosis with others?

How you disclose a diagnosis to family, friends, and school staff will depend upon a variety of factors, including your values, your personality, and your level of comfort in sharing personal information.  It is fairly difficult to hide social learning concerns, so people probably suspect something is going on, but how to tell them, formally, official, once and for all?

  • Keep your child at the center of the conversation If you are telling someone about something as personal as a psychological diagnosis, it is safe to assume that they have met your child, like/love your child, and have a vested interest in promoting his or her growth. Take a deep breath, try to share your concerns, and use concrete examples from your child’s life.  Try to relay examples, and then use that to support the diagnosis.
  • Give concrete examples There are many misconceptions about what it means to be diagnosed with ASD. Sometimes it makes sense to give examples, and then share the diagnosis.
    • You know how Jack has been struggling with friendships? Clearly, he wants friends, but seems to miss social cues about forming friendships and how to be a good friend.  We were worried, and after consulting with his doctor, it ends up he has ASD…  And that amazing ability to remember dates?  ASD!
  • Address common concerns Despite the number of people diagnosed with ASD, myths abound. It is fairly common to hear parents state, “But I don’t want him to have ASD: I don’t want him living in my basement playing video games!  I want him to go to college and get a job and move out, like his brothers!”
    • Know your audience and address any concerns that you see coming. Many parents and grandparents have told me that, in hindsight, they regret comments they made in a moment of despair.  “But I wanted grandchildren!”  or “But she is so smart!” or “But girls don’t have Autism!”  Yes, and all those statements can still be true while honoring and accepting the child you have in your family.
    • Be prepared for a “grief reaction” as people attempt to wrap their heads around what you are saying.
    • Have a list of books or websites that might be helpful to your family or friends
    • Be prepared for comments that are intended to be helpful and might actually hurt.
    • Be prepared for a ridiculous amount of love and support and offers of names and numbers for families in the autism community. Take it all in!
  • Have the conversation repeatedly In the same way that you are learning about ASD every day, and you continue to understanding the impact of ASD on your child and family, your family and friends will also need some time. Continue to initiate the conversation, invite questions, identify strengths, and allow this discussion to occur repeatedly.
  • Be as patient as you can with questions and disbelief I’m sure your family and friends are awesome. I’m also pretty sure they have the capacity to make the occasional “social oops.”  Be patient, forgive, and move on.  I’ve heard some remarkable statements in my office, and I know those are only a few of the statements made to my clients and their families.  People make mistakes.  Sometimes people are not ready to accept reality.  (Fine, sometimes people are intentionally hurtful.)  As best you can, be patient, answer questions, address misconceptions, and focus on raising an amazing human!
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