1 in 50 School-age Kids Have an Autism Diagnosis. What Does it Really Mean?Lisa Quinones-Fontanez
The year I was born, the number of children diagnosed with autism was 1 in 5000. And I went through my school-age years and then some never knowing what autism was or anyone who had it. As I grew older, I had an idea it existed but it wasn’t anything I knew about.
It wasn’t until 2008, at the age of 33, that I really learned what autism was. I had no choice to know because it was my two year old son, Norrin, who was just diagnosed. That spring I had entered the digital world of MySpace. I didn’t know anyone else raising a child with autism. For a long time, among my network of friends, Norrin was truly 1 in 11o.
My son is now seven. And based on a recent survey every 1 in 50 school-age children have an autism diagnosis.
Like everyone else, I wonder what it really means. Is autism an epidemic on the rise? Or are doctors and parents getting better at getting an earlier diagnosis?
I’m not a scientist, doctor, therapist or special educator – I’m just an autism mom sharing her opinion.
And I think its a little of both. I think there is less shame in having a child with autism. For years, the cause of autism was associated with the ‘refrigerator mother.’ While that theory has been proven false, and autism is much more prevalent today, there is still so much people don’t know. Just the other day someone accused me of being the cause of Norrin’s autism because I was on drugs. I was not/am not on drugs. And drugs do not cause autism.
I think autism is so broad a spectrum, that many kids meet the criteria.
Parents in the newer survey who reported that their children had received a diagnosis between 2008 and 2012 were far more likely to report that the diagnosis had been characterized as “mild” than parents who received the diagnosis earlier. (Jan Hoffman, NY Times)
I think parents know what to look for and are quick to have their kids evaluated. Parents are less likely to “wait and see.” And I think doctors are more likely to diagnose at an earlier age because Early Intervention services are critical in treating autism. I don’t know where Norrin would be today if it hadn’t been for those first few years of intensive services. Within months of services, he had started to speak, point his finger and putting together twenty-four piece puzzles. And the service providers helped me understand Norrin and how to work with him.
I worry about the increase number of children being diagnosed with autism. Because as the numbers increase, as the need for services and early intervention increase – however states are cutting back on Medicaid and other healthcare services. Eventually these children will grow up but will most likely have a difficult time finding employment. I don’t need a survey or study to know there is a gross imbalance.
Ever since Norrin was diagnosed, I’ve been fighting the Department of Education for the basic services – like occupational therapy. The New York City public school system is not prepared to meet these rising numbers. They are not prepared to provide one-to-one services or specialized methodologies. Many teachers have no experience teaching kids with autism or how to modify lesson plans. Many public schools do not have the capacity to create sensory or occupational therapy rooms. As for specialized schools/programs for kids with autism – they are few and far between with limited availability and long waiting lists. And the cost of some of these specialized schools are out of the financial reach for most working families.
We need to talk about the autism rates but in that same conversation we need to discuss services, education plans and employment possibilities. If the numbers of children with autism are increasing, it means there needs to be a increase in everything else. It is the only way any of our kids can succeed.
- My Son has autism. No need to say I’m sorry.
- Autistic Kids are Amazing
- Autism in the Middle
- The Milestones and Moments to Celebrate When You Have a Kid with Autism
Read more of Lisa’s writing at AutismWonderland.