Amid all of the craziness surrounding COVID-19 it is difficult to be thinking of anything else. April is Autism Awareness Month however, and we at Turning Pointe will be continuing to take this month and shine a light on Autism. It has been nearly 50 years since the Autism Society held the first Autism Awareness month in April of 1970. “Since then, autism has become the fastest growing developmental disability in the world,” from 1 in 10,000 to 1 in 59 today as reported by the CDC.
When our son was diagnosed in 1999, we truly felt alone. There was minimal awareness about autism at that time. We learned what we could from where we could and tried hundreds of different therapies and biomedical treatments usually deemed “the latest and greatest.” Life was chaotic to say the least, we didn’t have the internet, and little was known about autism.
One of the hardest parts about living with autism then was taking our child out into the community. No one knew what was going on with our kids and trying to get through a market or parking lot without a complete meltdown was made even more stressful among dirty looks and negative comments. Autism was and still can be very isolating. Advocating for our kids on the spectrum is still a full-time job, couple that with taking care of our kid’s needs around the clock and you can call “exhausting” an understatement.
Flash forward to April 2020. Mainly on the agenda of creating awareness, Autism Speaks has become a leading organization in championing the autism cause. Momentum around Autism Awareness month has increased tremendously with higher diagnosis rates; better education, and organizations around the globe collaborating more than ever to shine a light on autism. The more recent establishment of World Autism Day on April 2, a date chosen by the United Nations General Assembly, kicks off the month worldwide. This year will mark the 10th Anniversary of World Autism Day with a theme of “Toward Autonomy and Self-Determination.” With more awareness and greater therapeutic interventions this is becoming a possibility for so many of our kids on the autism spectrum.
When I asked my first “autism mom friend” what autism awareness meant to her today, it took her a minute to reply. There are so many emotions that come to light after being on the front lines for so many years.
“I really have zero, but I guess as parents we are too aware for words. The only thing I can think of is that we need to continue to educate people that autism is a spectrum disorder that is seriously debilitating in over 50% of those with the diagnosis. I often use Autism Awareness month as an opportunity to shine a light on this so that people don’t forget how serious it can be when there are so many less impacted individuals carrying the same diagnosis. It looks different on everyone; it can be confusing for people and they may not see our cause as one worthy of supporting. “But it is so important,” said Cyndi Guathier, whose daughter Kearney was diagnosed at two and is now 22 and significantly impaired.
With the COVID-19 virus shutting down nearly all of our nation, students with autism and their families are having a particularly difficult time. Our kids need the structure and community that school and day programs provide, and many don’t understand “why they have to stay inside.” Turning Pointe will continue to monitor the situation and do what we can to get our kids back to school as soon as safely possible.
Turning Pointe does have several awareness events and promotions scheduled throughout the month of April and will keep you up to date of any changes due to COVID-19.
Please visit our website for more information at www.turningpointeaf.org.
Stay healthy everyone and remember to LIGHT IT UP BLUE!