Three Things Autism Parents Need to Hear

Having a child diagnosed with autism can feel like your world has completely shifted.  I know this because it's happened twice to our family.  Two of our four children have autism spectrum disorder (ASD).  I remember when our oldest son was diagnosed, I was four months pregnant.  I curled up into a ball on our bed and cried for hours. When our third son was diagnosed, I was more prepared for the words and I only cried at night when no one else could see me. I cannot begin to explain to you how difficult those first few months were.  I was inundated with more information than I knew what do to with--ABA therapy, occupation therapy, sensory processing disorder, speech therapy., pediatric neurologists, biomedical treatments, special diets, the best way to deal with insurance companies. That's just to name a few.  It's a bewildering, confusing time and, looking back, I'm not sure how I survived it.

If you have a friend or family member who has just had a child diagnosed with autism, you may be feeling helpless yourself.  You want to be a friend but you don't know what to say or do.  Here are three things I needed (and still need) to hear:

1. "I'm here for you."

Having a child with autism affects all areas of my life, including my friendships.  At any given time, I can feel: exhausted, worried, scared, or angry  100% of my energy goes to helping my children and that means many other areas of my life fall to the wayside. So, the truth is sometimes I am a terrible friend.  It's not intentional or mean-spirited.  It's just what my life is like right now. More than any other time, I need to know that my friends haven't given up on me.  I need to hear, "I'm here for you" from my people.  Those simple words mean the world.  Sometimes that looks like a text message checking up on me.  Sometimes it's a quick note or email.  Sometimes it's kidnapping me for a break and a cup of coffee.  Just knowing I have friends to lean on now and then is so very important to me.

2.  "I love you and your family."

Our family will always be different.  Our children will always have struggles.  Sometimes those struggles are very public (think meltdown in the middle of a parking lot) or very private.  Either way, \autism has changed our family and, for some people, changed how they see our family.  What I need most in these times is to be surrounded by people who are on our side.  I need to hear, "I love you and I love your family," and I need you to mean it.  I need you to love and accept our family just the way it is, not matter what it looks like.

3.  "I support you."

After an autism diagnosis, autism parents get a lot of advice.  I mean, a lot.  From everyone.  "Oh, I read an article about autism.  This is what you should do."  "My neighbor's best friend's son's boy has autism. Have you thought about this?"  Your doctors will have advice.  Your family will have advice. You'll have so much advice, you can start writing a column for the local paper.  The thing is that there are a plethora of approaches for the treatment of autism--medical, psychological, therapeutic, holistic, biomedical--and each parent gets to decide what is best for their child.  As a friend, your job is to simply say, "I support you. I know you're doing what is best for your child.  I support you."  No judgement or extra advice (unless it's asked for), just support.

I know these three statement seem small and inconsequential.  It doesn't seem like you're doing much to help out, does it?  But you are.  During the months after an autism diagnosis, autism families need to be surrounded by people who love and support them more than ever.  Even now, seven years after our first diagnosis, it means everything to know I have friends and family that are walking this journey beside me, loving our family even when it's not easy, but always willing to remind me that we aren't alone.