I’m finding that recently I’m having difficulty using functioning labels as a descriptor for not only my children, but for others with Autism. As I get older and more involved on this Autism journey with my kiddos, I noticed I’ve grown more uncomfortable with using “high-functioning” or “severe” when detailing where my children fall on the spectrum. While my comfort in those descriptors is at an all-time low, I still use them. I rarely use “low” to describe my oldest because I find that derogatory, but then I use “severe” and nowadays, that’s not sounding much better. I used to subscribe to the belief that functioning labels served some sort of purpose, an important purpose. The designation for functioning level allowed for a more detailed treatment program that would cater to their specific needs, that’s what I felt. My youngest is what many (including myself) would label as high functioning, and as I type, he’s in the background in the beginning stages of what sounds to be his most epic meltdown yet, and I’m strongly disliking “high” functioning right now.
What actually makes one “high” functioning? Or “Low?” What about “moderate” (the in-between)? High gives the impression that my son is void of the many challenges that my oldest has. As if he just has a little bit of Autism. Not much, just a tad. And because of this label, I’m finding myself combating stereotypes and having to prepare myself for another lesson in “Teach that Person about Autism.” I read the posts online, I talk with other parents and I have come to the conclusion that none of us really know what “high” or “low” functioning is. What is it measured by? IQ? Or, perhaps, speaking ability? Functional life skills? I know that there are those who cannot speak a word, yet have average intelligence, but other symptoms of Autism have branded them with the “severe” (or moderate) designation. I know many who know every single word of the dictionary, can recite chapter novels word for word from memory at age 6, and yet cannot hold a conversation with another person. Or in the case of my youngest son, who is highly intelligent, yet his symptoms and sensory issues impacts his ability to function well in life. Autism exists on a spectrum, no two are affected the same, so it would make sense that no two are going to completely fit a designation of high, moderate, or low. I cannot see any real way of determining the criteria for functioning level in the first place, as there is so much overlap. Functioning for those with Autism isn’t uniform, and it shouldn’t be treated as such.
I mentioned earlier that I rarely use “low” to describe my son, and that is because I feel that it is derogatory. I found that many doctors would often label my son “low” before or after they read off a list of extremely low expectations for my son, many of which he has surpassed over the years. “Low” meant “don’t expect much” to me. I don’t like that. My son is labeled high and that makes it extremely difficult for me to get services for him because it is assumed that he doesn’t really need them. High, low, and everything in between is outdated and promotes stereotypes. On one end, the label assumes that one son won’t do much in life and on the other, assumes that my other son won’t ever need help in life.
As previously stated, my oldest has passed the expectations of some of his doctors and I believe that he can accomplish more and more. I have met parents, who state that their child was once severe, but now they’re moderate, or the stories I read online where if there were some uniform functioning level, these children would move from one designation to the other. To me, this means that functionality isn’t static. Those with Autism don’t just stay at one functioning level their entire lives. They progress…and they also regress.
The point of this entire piece is that I find there is no point to functioning labels. I no longer see the point in the label within the diagnosis of Autism. A spectrum disorder that affects every individual differently, no two are the same; no two will ever be the same. Focusing on the individual and their specific strengths and challenges will prove more effective in the long run. Base support on the individual and their needs, not their functioning level. And for society as a whole, looking past the label and focusing on the individual will bring about acceptance.