When one of my family members was given the news about our son’s diagnosis, her reaction was to email her close friend who earned her PhD in psychiatry over 40 years ago and never practiced.
That friend wrote a long response condoning the diagnosis, the doctors who issued it, the culture that nurtured those doctors, and us, the parents who sought the diagnosis. She went so far as to offer her own diagnosis. For a child she’d never met! My family member forwarded that email to us unfiltered. It was devastating.
When we gave one of our friends the news, she was visibly taken aback, surprised. Her eyes filled with tears. She hugged me. She said, “He’s lucky he has you for a mom.” And she said, “He’s the same kid to us and we love him just the same.”
Seven years after this conversation, I still weep with relief and gratitude when I recall it. What I’ve learned is that no one automatically knows how to deal with a diagnosis.
We were told: He’s too young; ASD is over-diagnosed; he’ll grow out of it, we (the family member and the friend) know better; it’s just a faze; it’s a fad; the parents have been misled.
We wanted to hear: everything will be okay; time is on your side; we trust that you are doing what’s best for your son.
We needed to hear: you can do this; take it one day at a time; he’s such a great kid; we’ll help; what can we do?
We handled the family member poorly by refusing to discuss the email from the friend. It became an elephant in the room. We didn’t, however, ignore her. We included her on all the correspondence with friends and family about the therapy, the trials, the victories, and the growth.
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I am part of a community of parents who have children on the spectrum and every one of them has at least one story to tell of at least one family member or friend who rejected the diagnosis. Most of us have many stories. These are stories of despair and anguish because the parents turn to their loved ones at an extremely vulnerable time for support and instead are often criticized.
It can be soul-destroying if it’s a needed family member like a mother or a spouse. Some become estranged, leaving the parent of the child with the diagnosis without the support that will ease dealing with it. Many become estranged, shadows, and the parent is left to grieve their loss.
There is every possibility for reconciliation. Apologies and understanding go a long way. My family member apologized to me last year for that email seven years ago to her psychologist friend. She said she was thankful that we had ignored her because the early intervention had so clearly helped our son. Her apology and the affirmation that we had done the right thing helped heal a deep wound.
This article was featured in Issue 100 – Best Tools And Strategies For Autism