Sam Farmer
Rather than interpret the results of this study as implying that autism is a growing epidemic and a condition which therefore is to be feared, view it instead as being reflective of the natural neurological diversity inherent in humanity, carrying unique challenges as well as strengths.
According to the United States Centers for Disease Control and Prevention (CDC), the prevalence of autism in the United States increased from 1 in 54 children in 2016 to 1 in 44 in 2018 among 8-year-olds. The data are based on health and educational records for 220,281 children in 11 states, collected across the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. The network encompasses Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah and Wisconsin.
Furthermore, researchers found that progress was made in the early identification of children with autism. These children were 50 percent more likely to receive an autism diagnosis or special education classification by age 4 when compared to the 8-year-olds. Among children who were 4 years old in 2018, the autism prevalence was 1 in 59, up from 2016’s estimate of 1 in 64 children, according to records for 220,394 children across the same 11 ADDM states.
Society is considerably more aware of autism now than when I was growing up, and the diagnostic criteria for autism have evolved considerably since then. There is good reason to believe that these factors are behind the increase in prevalence. Nonetheless, diagnostic disparities persist for people of color and those assigned female at birth which continues to raise questions about bias in the diagnostic process. For example, some autistic women I know have said that they were initially misdiagnosed because the same criteria used to evaluate autistic males had wrongly been applied to them. The numbers are headed in the right direction, though more work remains to be done in leveling the playing field for all.
As a 52-year-old autistic adult and autism spectrum community self-advocate who didn't find out until age 40 and paid a price for this, I am very happy to see these increased rates of diagnosis at increasingly younger ages. The more diagnoses, the better, and the earlier the diagnosis is made, the better, with respect to knowing to seek appropriate accommodations and supports as well as with respect to self-knowledge. I have often said to myself and to others "if only I knew then what I know now.” Knowing my diagnosis decades earlier would certainly have spared me considerable hardship, particularly in my social life, because of compromised sense of self and social competency-related difficulties, both of which had to wait a long while to be properly addressed. Better late than never, though nonetheless, a lost opportunity. I celebrate the results of the CDC study in part because it focuses on increased autism prevalence in children who, by virtue of their age, could use to their advantage what I lost so much of: time.
As such, an autism spectrum diagnosis is a blessing in disguise. It brings certainty whereas the alternative leaves one to dwell on often frustrating and anxiety-provoking questions, negatively impacting self-esteem. It can serve as an impetus to pursue self-growth and to tackle challenges upon which the autistic individual may wish to improve. And with the diagnosis comes the ability to raise awareness among family members, peers and others, opening up the possibility for the establishment of more realistic expectations, not only those that others hold for the autistic but also those that the autistic holds for him or herself. It doesn't always work out this way, but often it does. It worked out this way for me and for other autistics I know in the community.
I will not oversimplify the diagnosis by only calling it a blessing. At first, my diagnosis, that of Asperger's Syndrome (referred to today as a mild autism spectrum disorder), hit me hard, leaving me confused and upset. I am hardly alone in having felt this way upon finding out. With that said, it is still better to know, and to know early, than to never know or to find out after too many years have gone by.
Because of the sense of optimism which I am most fortunate to possess and after lots of hard work and time spent learning about what Asperger's entails, I was able to accept and eventually embrace the puzzle piece that was missing for so long. I faced decades of unanswered questions which were finally answered. Why was making friends, dating and intimacy as challenging as they were? Why did I struggle in many social situations in which everybody around me seemed to be doing just fine? Why was self-awareness a problem, and, consequently, awareness of others and of what was going on around me? My hope is that the increasing numbers of children diagnosed young will not have to face these kinds of questions, or at least will not have to contend with them for long.
In this respect, I want more for autistic kids today than I had when I was their age, particularly those in underserved and marginalized communities. My wish is that they, and those who love and care about them, will use the diagnosis as a call to action. Use it as a means of acquiring a greater understanding of the challenges the child faces and how these challenges may best be addressed. Use it as inspiration to learn about the strengths and unique attributes which autism often brings and which of these are relevant to the child: meticulous attention to detail, "outside the box" thinking, analytical skills, the ability to focus on certain tasks for long periods of time, to name a few. Most importantly, use the early diagnosis as the reason to begin the hard work of self-esteem building sooner than later. Don't waste a day. Compromised sense of self is universally applicable to autistic children for a variety of reasons. I was no exception, even as one of the lucky ones who had parents who prioritized positioning me for future happiness and success during my formative years and into early adulthood. Still, it wasn't until my mid-40's or thereabouts that I finally learned how to love myself. This was due in no small part to my late diagnosis.
Direct autistic children toward activities and pursuits they enjoy and at which they demonstrate proficiency. Continually remind them of the reasons why they should be proud of who they are and allow them to be who they are. Deliver high praise when they do something well, particularly if the task at hand is relevant to one of their challenges. Reassure them that we all win sometimes and lose sometimes, and that it is OK to not always be able to satisfy everybody. The benefit of extra time which comes with an early diagnosis must not be squandered. Make the most of it!
It's all in how we look at things, as I have written and said many times because it bears repeating. Autism is not a bad thing, in spite of the fact that it is on the Centers for Disease Control's radar. Rather than interpret the results of this study as implying that autism is a growing epidemic and a condition which therefore is to be feared, view it instead as being reflective of the natural neurological diversity inherent in humanity, carrying unique challenges as well as strengths. If you resort to the latter outlook, then the increased prevalence of youthful autism diagnoses is indeed a positive development.
Sam Farmer wears many hats, among these father, husband, musician, computer consultant, and autism spectrum community contributor. Diagnosed later in life with Asperger’s Syndrome, he writes blogs and articles, records coaching videos, and presents at conferences, sharing stories, ideas, and insights as to how one can achieve greater happiness and success in life despite facing challenges and adversity that often interfere in these pursuits. To learn more, visit samfarmerauthor.com.