I am so grateful for every person who used their platform to bring awareness to autism. Awareness was the first step to improving the lives of individuals and families impacted by autism. I fought for awareness and now it's time for a new verb.
This is not a dis on anyone or anything, it’s just I've been living with this same message for 17 years. And, as I was thinking what to say for Autism Awareness month? What needs to be said? What would make a difference? I just kept coming up blank, then it hit me “It’s not about awareness anymore”. We are aware now! We have made progress and it’s time to get a new slogan and new mission that changes the lives of all the people our society is now “Aware” of. And I hope Hollywood will get on board and embrace a new campaign.Let's face it, now we need to be about action, next steps. Maybe we begin with a new slogan; Autism Inclusion Month, or Autism Action Month, or Autism Support Month.
I’ve been on this journey for 17 years now, much of which is documented in this blog. If you are one of the people who have read this blog through the years you know it begins with my testimony to the California Senate Blue Ribbon Commission when I shared how having a young child with autism was a nightmare families could not wake from. Getting an early diagnosis was almost impossible as most pediatricians did not know the signs, and if you could not afford the $3,500 private developmental pediatricians wanted for assessments you were probably flat out of luck. Then if you were fortunate enough to be told your child does have autism “A permanent lifelong disability for which there is no known cause of cure” they just sent you home to sort things out. Unlike any other major illness or disability where families are embraced by the system and provided with protocols of care and resource’s families living with autism were abandoned by the system. With no skills or tools families were just sent home to care their child – who typically required 24/7 support, cope with their grief and do the full-time job of trying to navigate complicated systems of care to find hope! A devastating reality resulting in a 86% divorce rate for families, isolation, depression and financial ruin because the needs of an autistic child were so intensive parents could not work and care for their child.
This was the unimaginable fate of so many families due to lack of awareness. But as awareness improved and 1 in every 64 children had a diagnosis of autism, things changed and today most people know about autism. The result physicians have been trained, therapies are available, states have funds for early diagnosis and intervention. A great accomplishment! And now it’s time to move on.
Today most funds for autism are earmarked for early intervention, doing little for those individuals with autism who are now in middle school, high school, and aging out of the system. We have done little to improve our social settings to include families and individuals with autism. Today as I think about Nick’s upcoming birthday, yep he’s an April kiddo born in Autism Awareness Month! I am not optimistic about his future, in fact, I’m the opposite. I am scared for my son and his sister who will inherit the burden of care. And this is how I feel as the parent of a kiddo who has made incredible strides in his independence as a result of early intervention.
17 years into this diagnosis we live in the social isolation today, as we did when he was diagnosed. This year like all the other years, he has not be invited to any typical child’s birthday party and his birthday party will be attended by adults and perhaps a few others on the spectrum. We still go into the community and people pretend not to see us, or they look at Nick in fear when he makes noises and jumps suddenly. But today my most crushing reality is once Nick ages out of the school system – unlike his typical school peers who will go on to jobs, vocational programs, colleges or universities – there are few viable options. The image of “Wall walkers” comes to mind. Special needs individuals being driven around town in white vans making mindless trips to the mall, the 99 cent store, maybe Target. Or for a treat a trip to McDonald's where they are all seated away from the other customers who are uncomfortable or a theme park where they connected by matching shirts or string that attach them like cut out dolls, dressed in clothes that make them look unloved and allowed to wear toddler hats. That’s what families have to look forward to after years of “Awareness”
So, yes awareness have improved. Early intervention is funded. Kids are being diagnosed and families are being lead to believe the future will be better. I’m here to say, that is perhaps the cruelest part of this whole journey; to work so hard for years expecting “better” to find that while your child was growing up, and you were doing all you knew to do, the system was not keeping up with you and one day you would end up right back where you started, alone with a young adult who still needs 24/7 care and nowhere to go.
That’s reality, and in some ways, it’s a more crushing blow than the first, because back then in the there was still hope. And as a society, we were still more forgiving of an adorable autistic toddler, no matter how inappropriate his behavior, than of an autistic adult.
That’s why it’s time to move on and work on directly impacting the lives of families living with autism, beyond ages 1-5. It’s time for “Autism Inclusion Month” and just like awareness it begins in our communities, it begins with us, simple kindness something like this.
Let’s start an inclusion revolution.
Here are a few ideas.
When you see an individual with autism – Say hi, even if they don’t say hi back.
Invite families you know who are living with autism to your parties, to your homes for dinner.
Help parents who are caring for an individual with autism; drop off a meal, a Starbucks, a bottle of wine.
Invite a mom who is caring for her child with autism over for a cup of tea, volunteer to run an errand or any gesture of kindness you would give to any neighbor or friend in need.
Then for those of us who are the ones living with autism, we need Autism Action Month. A month where as a community we come together to push the bar forward. A month where we unite in large numbers, make our voices heard, and advocate now for system change including programs and funding that will support our children after Highschool and insure there are supports in place for the inevitable when we are no longer here to care for them.