I wrote this for, and it was originally published at the Autism Society’s blog site on April 26, 2012. With today being the beginning of Autism Awareness/Acceptance Month, I thought it would be a good time to re-post it here…
April is my son Mikey’s birthday month…it’s also National Autism Awareness Month. Little did my wife and I know, seven years ago, that the month of April would be important to us for both reasons.
Most Americans are now aware, however slightly, that April is Autism Awareness Month. And you’d have to have been living under a rock to have missed the recent big news about the drastic increase in the number of children with autism (the rate is now at 1 in 88 children, and 1 in 54 boys, having some form of the developmental disorder). But, honestly, we have to ask ourselves how much that matters to those of us already touched by autism.
Long after April is over…long after the stories fade from the news…autism is still there. And we, as parents, family, and teachers of children with autism, are the ones truly aware of autism and the fact that diagnosis is only the first step in a life-long process.
Special awareness months and heightened attention to autism in the news are important for educating the public and motivating parents to get their children tested in case they see the potential signs of autism. But we need more than that…
Awareness months need to be followed up by “Treatment Months.” The media needs to report on autism treatments and focus on families with children who are in need of all the help they can get and not just on the heart-warming story of the high school teen with autism who plays sports and has tons of friends. Mainstream news stories rarely show the real daily challenges that a child with autism faces.
“Awareness months need to be followed up by ‘Treatment Months.'”
Don’t get me wrong, I’m all for Autism Awareness. It’s why I write these blogs. It’s why I wear my autism wristbands. It’s why I volunteer whenever I can. But whenever April comes around I can’t help but be reminded by Mikey’s birthday, and the news, that much, much more needs to be done in the world of autism.
Right now it seems like Autism Awareness is mainly focused on diagnosis. Again, that’s incredibly important and very necessary. But, the post-diagnosis landscape still feels like a barren desert for many parents. In most cases, you’re told your child has autism and then not much else. I can honestly say that after Mikey’s diagnosis I felt so frustrated by that “now what” feeling of helplessness and fear. It’s important to be aware of autism; it’s more important to know what to do about it.
Taking into account that our children are each unique in their needs and how autism impacts their lives, I propose that every doctor and therapist that makes an autism diagnosis should also be required to provide some sort of comprehensive plan for parents and caregivers. This plan should be put together based on studies, input, and advice from the CDC, doctors, teachers/therapists, and parents. Parents facing a new autism diagnosis need guidance and support from sources they can trust.
A few days ago, as we celebrated Mikey’s 7th birthday, I realized how lucky we have been with his early diagnosis and the skilled teachers and therapists he’s had. But I also stopped to think about the way I felt right after his diagnosis and how every April, as the awareness campaign ramps up, I feel for the parents of children who will receive a new autism diagnosis.
With that in mind, I deeply believe that if we can take all the good that comes out Autism Awareness and convert that into factual, proven therapies and treatments we will do far more good than any brief news story on the 11:00 news will ever do. And that will truly make April a happy, happy month in more ways than one.
Note: If your child has just been diagnosed with autism, read the Autism Society’s resource After the Diagnosis for some initial guidance.
Autism Society Bio: Dan Olawski blogs about fatherhood and his son Mikey for the Autism Society. He lives with his family on Long Island, N.Y., where he works as a writer/editor. His time is spent following Mikey with a vacuum cleaner, watching his beloved New York Yankees and continuing his pursuit of the perfect chocolate chip cookie.