This evening a friend approached me and let me know that he has a son that was born with special needs. Another friend recently asked for my input because her son was recently diagnosed with Autism and she was attending her first ARD at school. Still another new friend recently shared with me her journey as she has a special needs son who is now an adult and low-functioning, like my seven year-old son. It seems like everywhere I turn, I meet people who are special needs caregivers or who know people who are caregivers.
In the media, there is an endless amount of articles and posts about the ever-growing special needs population. In public, we see more and more people with special needs out and about.
So what’s going on?
The numbers are skyrocketing.
So, because the numbers are skyrocketing, you think that more and more people are being born with disabilities, don’t you?
Here’s a shocker – this isn’t necessarily true.
Let’s talk about Autism. Not because all of us are caregivers of Autistic children, but because this is one diagnosis that is all over the news and social media all of the time. Also, it’s a popular one that most of us have heard of as opposed to an obscure one that we can’t relate to (i.e. – my kid has periventricular leukomalacia, also known as… WHAT???).
Here is an article posted by the CDC (Centers for Disease Control and Prevention). The fact that Autism is not a disease will not affect my feelings about the source of this article (please pick up on sarcasm here):
https://www.cdc.gov/ncbddd/autism/data.html
I want to draw your attention in the article to the title of the chart. The title is IDENTIFIED PREVALENCE OF AUTISM SPECTRUM DISORDER. Take note of the word IDENTIFIED. Remember this because I am going to come back to it in a minute.
It is now 2019. In the 1960s, the culture of special needs was wildly different than it is today. Having a child with special needs was considered shameful. If you gave birth to a child like this, they were called names like retarded, stupid, defective. There was no place for them in the public school system. You either kept them home, hidden away from others to avoid the shame, or you institutionalized them. People made fun of the family with the “retard,” (yes, I want to cry just writing this). This wasn’t so long ago. At this time there was NO GENERALIZED SCREENING for Autism.
In fact, according to this article below, the federal government didn’t make Autism a special education category until 1991. And it wasn’t until then that “public schools began identifying children on the spectrum and offering them special services,” (It is important to note that doctors are the ones diagnosing, but even they have only been doing so for a short few decades. Their tests are improving as well). Check out the article:
https://www.parents.com/health/autism/the-history-of-autism/
Since I have no shame in getting older, I am happy to date myself by letting you know that 1991 was the year that I graduated high school. This means that NONE of my peers who today would be considered on the Autism spectrum were screened, diagnosed and educated properly. Because it simply wasn’t being done.
Think of the thousands of children that grew up into adults that suffered from lack of acceptance, lack of diagnosis and lack of educational course of action. But there is one more thing that there was a lack of.
These people weren’t counted. In other words, they weren’t IDENTIFIED.
If you don’t have a diagnosis, you can’t be counted as someone in our society that has a disability. Remember when I told you to remember the word IDENTIFIED in the title, IDENTIFIED PREVALENCE OF AUTISM SPECTRUM DISORDER? If you go back and look at the chart in the CDC article, they were tracking IDENTIFIED people diagnosed with autism. Having worked in public education for 15 years I can tell you that when the public schools are handed new tasks and are directed to develop screenings, it takes a good ten years or longer to refine them before they are really good. So since they began in 1991 to service these people, the screenings were probably still being refined up to 20 years later and still to this day. And as the screenings improve and the nuances that reflect an entire gamut of different ways Autism manifests itself in the individual are being found through testing, more and more people are being identified as Autistic.
Does this mean we have an epidemic? In my opinion, no.
At the top of the chart it says that 1/150 children in the year 2000 were DIAGNOSED with Autism. At the bottom of the chart it says that 1/59 children in the year 2014 were DIAGNOSED with Autism. It DOES NOT SAY that more children HAVE Autism.
Remember all of the people in history that weren’t counted? They EXISTED. They were in our society. And, if we had counted them, guess what? We would have discovered that these numbers that we are getting today, 1/59 (or whatever the current count is), have probably been what they are all throughout our history. Autistic folks have ALWAYS been there.
You know what hasn’t always been there? Our society’s willingness to see them, to honor them, to accept them, to educate them and to love them as worthy members.
I am so thankful that this is changing. If you missed my article on how this is the greatest time in history for your special needs child to be alive, check out the link to it, below:
So the next time you start hearing about the Autism epidemic, or the Special Needs epidemic, remember that it is highly unlikely that such an epidemic exists. But also, we should be so lucky to have more of the amazing children that we caregivers are raising. Because you, of all people, know how incredible they are.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!