You may be unsure what to say or how to approach them, but it's important that you don't just walk away.
Autism is a tricky diagnosis. It isn't cancer, it isn't fatal, it isn't traditional in how we think of a medical diagnosis.
But it does come with many challenges. Some people will fight you even sharing negative thoughts or concerns because you aren't "accepting" your child. Let me tell you that couldn't be further from the truth. Helping your child function, communicate and engage with the world around them does not mean a parent is not accepting of who their child is.
Autism is unique. It comes with a spectrum so wide that it can be hard for people to understand what it is. I remember when my son was first diagnosed. My mom friends were shocked because Gabe was so affectionate and happy. In their minds autism meant completely withdrawn and not social at all. For many, that is their autism, but certainly not all.
Because people don't understand it, they don't know how to approach it. This is completely fair. I had no idea myself. There is no guidebook on this one. People don't bring you dinners or start Go Fund Me pages. There are so many videos, articles, even TV shows out there celebrating autism and the achievements of children and adults on the spectrum that it doesn't even seem like a challenge at times. While it is wonderful to celebrate differences, I think it has skewed the reality of what so many families are actually confronting. Autism simply doesn't look the same for everyone and TV shows don't tend to depict the more severe end of the spectrum or what daily life looks like.
Autism is tiring. Days are filled with therapies, appointments, special interventions and repeatedly working on basic skills. So many days 5:00 rolls around and I haven't even thought of dinner.
Autism is expensive. Insurance doesn't cover everything. The medical community is still trying to understand its origins and so non traditional therapies or newer interventions are not generally covered and must be paid out of pocket.
Autism is isolating. Because people don't always know how to approach the diagnosis they back away. It's easier to walk away then try to understand.
Getting the diagnosis of autism for a child brings many emotions. Fear, sadness, sometimes even relief for a diagnosis so that a family can finally get help. So what can you do if your friend has just received a diagnosis for their child?
First, just be there. Call your friend. Listen to their fears. Let them cry. This is a new journey and it can be daunting in the beginning so just be present.
Bring over a dinner or offer to babysit if they have other children. Those first months after the diagnosis were exhausting. My days were therapies and appointments; my nights were reading and studying everything I could find to understand as much as I could to help my son. Sleep was a rarity.
Don't tell them how to feel. I didn't know how to feel in the beginning. The diagnosis didn't change who my son was, but it meant a new road ahead that was confusing and uncertain. I was scared, sad, not sure what was next. I needed to feel through it and being told how to feel made me feel awful if that was not the prevailing emotion at that time. It filled me with guilt and that was not another emotion I needed to add to my pile of rapidly growing emotions.
Don't judge. There are a lot of new interventions out there and many families are willing to try different things to help their child. I have met with enough doctors and therapists to know that there is still a lot to be learned and a lot of research underway. If this was your child, do you know exactly what you would do? I didn't.
Check in. Sometimes in the midst of therapies and managing symptoms families with autism can get wrapped up and lost in the world of autism too. I can't tell you how nice it is when friends just send a simple text and ask how we are doing. Being thought of goes a long way.
Include them. They may decline invites to birthday parties, social outings, even playground meet ups, especially in the beginning. Children on the spectrum often have a lot of challenges with outings, crowded spaces, noise, lights, etc. Your friend may want to join, but they are just not ready or honestly, able. Even if you get a "no" 9 out of every 10 asks, keep letting them know they're always invited when and if they're ever ready. It means the world to know that when we are ready you're ready for us.
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