How Far We’ve Come

Today I took Sawyer to a birthday party for one of his best friends. He had an amazing time, and I was so proud of him, but that entry will come later. 😉

On our way to the party, I saw a billboard on the interstate for a website called ScreenforAutism.org. A quick search when we got home revealed that this is a new campaign from Autism Speaks. Now, I know a lot of people in the autism community have strong feelings about Autism Speaks; I’m not getting into that. I was simply surprised- and pleasantly so- to see a billboard about autism, especially in the rural area we live in.

In the year 2000, I was a high school senior and I don’t think I had ever heard the term autism spectrum disorder; however, the CDC states that in 2000, as many as 1 in 150 children were diagnosed with ASD. Back in 2014 when Sawyer was first diagnosed, autism diagnosis’ was becoming more prevalent; approximately 1 in 59 were being diagnosed with autism. I had heard the term by then, and even knew a couple of people with children on the spectrum, but it wasn’t until a friend brought it to my attention that Sawyer had many of the signs of autism in toddlers that I began to do my research and educate myself on ASD. Sawyer’s doctor at the time was a younger doctor, and when I first approached her with my concerns, I worried that she might not be well educated in ASD, but she was familiar with the disorder and was one of our best resources for getting Sawyer the help he needed. Naturally, after Sawyer’s diagnosis in late 2014, I have done countless hours of reading about the disorder and how life may pan out for our sweet boy. I keep up with new studies about the disorder, and watch the statistics rise; as of 2020, 1 in 36 children are diagnosed with autism spectrum disorder (to read the CDC’s latest data about autism spectrum disorder diagnosis, click here). It’s an astonishing jump in the number of diagnosis, and while I think it’s great that more children who have special needs are being seen and getting the services they may need, I also cringe and pray that doctors aren’t just jumping to a diagnosis because so many different disorders fall under the autism spectrum. Children run the risk of being misdiagnosed, because so many of the symptoms of autism overlap with other disorders and it’s understandable. I’m not a medical expert, so I won’t claim to know better than a doctor, but I worry about misdiagnosis a lot.

I often think back to the 1980’s and 1990’s and some of the kids I went to school with who were classified as special needs. Watching Sawyer and other children I’ve met with ASD, I often think about others I’ve met in my life with similar behaviors and wonder if they were diagnosed correctly. When I was growing up, if a child was slow to develop- whether mentally, socially, or physically- a lot of the time they were given the umbrella diagnosis of “mentally retarded” (today, we don’t use that term- it’s now called “intellectually disabled“). I think about some of those kids and how they were probably on the spectrum and just misdiagnosed. Back then, autism spectrum disorder was just not something many people knew about- doctors included. It makes me wonder how they may have thrived if they had the resources we have now.

One thing that irritates me to no end is how autism is almost trendy these days; I have heard people say things like “Well we’re all a little autistic” or people proclaiming that they’re autistic despite never having been diagnosed by a medical professional. No, we’re not all “a little autistic”; just because you may be obsessed with your favorite sport or TV show, a picky eater, or you’re a little socially awkward sometimes doesn’t mean you’re on the spectrum. And if you haven’t been diagnosed by a doctor, you shouldn’t be diagnosing yourself with anything, but that’s a whole other issue. My point is that just because you may have a few personality quirks that are shared by some on the spectrum, it does not mean you’re autistic. There is a whole community of people out there who hashtag their posts with #ActuallyAutistic and they are instrumental in spreading awareness for what is a normal quirk and what is a sign of autism. And also, to be clear, calling someone “autistic” or saying someone seems autistic just because they’re a little different is actually pretty offensive and stereotypical; it’s kind of the same thing as using the r word to insult or describe someone. It’s 2023, people- do better.

Anyway, after seeing the billboard today, I was struck by how far we as a society have come in educating and spreading awareness about autism spectrum disorder. Back when we first moved home to Missouri in 2016, there were only two places in the entire tri-state area that offered ABA services or occupational therapy, and both of them were a pretty good drive from where we lived. Sawyer had been in extensive ABA therapy before we moved from Kentucky, so I put Sawyer on the waitlist, and tried to continue working with him at home as much as possible using the exercises I had seen his tutors do with him until we could get in to one of the centers. I remember a young mom reaching out to me in early 2017, asking for advice on therapy options for her daughter. Her daughter was Sawyer’s age, and had just been diagnosed with ASD. I told her of the places I knew of, but also told her about the waitlist I was on for Sawyer; at the time, the expected wait was about a year for a child to get in for services at either of the locations in our area. After about a year of trying to make it work with the occupational therapists that visited the school, she ended up moving an hour north so her daughter could get the services she needed. Today, there are tons of options in our area for children who need those services, which makes me so happy for the children who need them. As the rates of diagnosis climb, the reality is setting in that there is a great need for services for these children, and thankfully our area- and our society as a whole- is rising to the challenge.

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