Two words to say to someone facing an autism diagnosisJuly 9, 2015
We have been through the diagnosis. We have been through the IEPs and evaluations. We have navigated education systems in three different states. I am beginning to feel like a veteran autism mom.
As seasoned and experienced as I'm feeling as of late, I was caught off guard when two friends recently started going through the diagnosis process with their own children and I didn't know what to say. I think I found myself tongue-tied because all I could think about was all of the things not to say. All of the well intended comments that were made to me when we started this journey that were meant to comfort but cut like a knife. During my discussions with these moms all of those comments came rushing back into my head. Some almost came out, because I just didn't have the right words in that moment. Wow, this is what it feels like to be on the other end of this conversation. Even without the right words early on I just couldn't bring myself to say the wrong ones.
I wouldn't say "I'm sorry." I heard a lot of these. And they were always empathetic and heartfelt. But they made me feel worse, not better. I didn't want people to be sorry for me. While this life might be different, it is not less. While my child might miss out on some things, he is not less. His life and his diagnosis are not things I feel sorry for, you shouldn't either.
I couldn't say to these moms "He'll be fine." I don't know if your child will be fine. I don't know that early intervention will move mountains. I don't know what the next twenty years looks like for you and your family. And when people told me "You caught it early, he will be fine..." it hurt. If he does not overcome, if he does not mainstream, if maturity does not lessen his symptoms...does that mean I failed? Please don't compare our journey to that of a friend of a friend whose child has ASD, had therapy and is now "fine." ASD is very complex and no two journeys are the same. Even as a mother of a child with autism I am very hesitant to give advice, as I know my son's autism is not your child's autism.
I knew better than to say "Really? He seems so normal." I was surprised by how much I heard this one. It seemed like a backhanded compliment. But it not only minimized what we were going through daily and nightly, it inferred that if he did indeed have autism he was abnormal, broken.
I would never say "Oh, I hope not." I only got a few of these doom and gloom responses. They lacked empathy and pretty much damned us to a life of a misery in one simple phrase. It is not a comfort and it is not helpful to try wish away a family member's diagnosis. It's hurtful.
You see, all of those are overthinking and overanalyzing someone else's situation. Those phrases do not comfort, they simply insert my opinion when my opinion was not asked. Parents facing an ASD diagnosis do not want unsolicited advice or pity. They do not want you to minimize their feelings or give false hope. They want you to listen. They want you to care. They want you to stay in their lives and not brand them as special needs parents. They want you to understand that although their lives might be taking a different turn, they still need friends. Their children still need friends.
Then it came to me. The two simple and perfect words you can say: "I'm here." And mean it. Mean it through every struggle, every victory and every passing year. Mean it on the days when autism is all they can talk about and on the days when they need an extra set of hands. Mean it when you are making out the list of which children to invite to your child's birthday party.
They don't need you to be an expert on autism. They don't need you to always say the right thing. Now, more than ever, they need you to just be there.
Learn more about how you and your family can interact with and support people with autism by downloading our free "Friend's Guide to Autism" available in our Family Services Tool Kits section!