Q: My son, a tween, was just diagnosed with autism spectrum disorder - essentially what would have been called Asperger’s a few years ago. We have not told him yet. We are doing research and are scheduled to resume sessions with a wonderful counselor he likes and trusts, though we can’t start for a month.
My concern is whether to tell friends and family about this diagnosis, and whether we should advise our son to keep this to himself (he has been bullied to the point of suicidal ideation in the past and is still in the same school district). I think my family would be supportive, but my husband’s would not. Choosing to only tell a couple people would be fraught; there are major gossip issues on both sides of our family. Of course, my son may opt to tell people no matter what.
I just don’t know how to help him ease into this new world and would love to know your thoughts.
A: Diagnoses can throw any family for a loop, and I understand the desire to “ease” him into this new world. I can feel the concern coming through your letter loud and clear, and I don’t blame you. Your son was bullied to the point of suicidal ideation; protecting his mental health is foremost in your mind.
I recommend going slow here.
It may feel like you need to have this all figured out (“all” being sessions with the counselor, how to tell friends and family, and who to tell). Your nervous system may be screaming, “get this right, right now!” but slowing down will benefit you, your son and your whole family. Your son may have a new term attached to him, but he is the same person he has always been and is perfect the way nature made him.
Tiffany Hammond, an autistic mother and advocate of two sons (who have the same diagnosis), understands this particular tension that you face. While you need to make sure your son is safe, she advises not waiting too long to disclose the diagnosis.
“I would not advise their child to keep it to themselves. This is a diagnosis that has been part of them their whole life, even when they didn’t know it,” Hammond said. “They would be asking him to hide a piece of who he is and this eventually leads to questioning whether something is truly wrong with them because they have to shield this part of themselves from others.”
Masking, or when people with ASD camouflage behaviors and characteristics to stay safe, is typically a sign that the person has been bullied, victimized or traumatized. Your son already has a history of severe bullying, so while you want to be careful moving forward, this new diagnosis can be freeing.
Your son’s past with severe bullying and suicidal ideation calls for special considerations for disclosure, though. Holly Moses, a licensed clinical psychologist specializing in autism and ADHD, encourages letting your son know about his diagnosis sooner rather than later, and recommended the book “Autism: What Does It Mean To Me” by Catherine Faherty.
As he learns more about his diagnosis, Moses recommends having a plan in place when telling friends and family. “Of course every child is different but they may want to hold off disclosing [to friends and family] until he has a weekly scheduled appointment with the therapist due to past suicidal ideation. It’s important to have a crisis plan in place and it could be helpful to partner with the trusted therapist on what might be the best ways to disclose the diagnosis.” Because your son’s mental health is the most important aspect of every decision you will make moving forward, you will want to ensure that the therapist and the school environment are as safe as possible before opening up about his story.
You wrote that you “think” you know how everyone will respond - if your husband’s family is not supportive, that is a major red flag. Moses suggests creating strong boundaries around your family and having a script ready for uncomfortable conversations. “For example, ‘We are happy to know that our son is autistic. Getting a diagnosis gives him and all of us the opportunity to better understand and support him. It’s important to support him any way we can, and learning more about autistic individuals is a good start. Would you like to learn more about autism and how you can support your grandson? We can provide some resources.’” Have a list of books, articles and websites ready, and don’t be scared to shut down or leave any situation that is shaming your son. We wish people wouldn’t make us choose between them and our kids, but be ready if they do.
Above all, find hope among the fear and worry. “I hope that your son knows how beautiful his mind is and how the world just has to catch on to just how wonderful it is,” Hammond says. Get the support you need to believe that, too. Good luck.