For those of you who may not know, April 2nd was deemed “World Autism Awareness Day” to “give extra awareness about autism and how it affects people around the world.” But I think that we, at least here in America, are already quite aware of autism. It was suggested that we start calling it “Autism Acceptance” instead of awareness, but as someone pointed out, autism acceptance shouldn’t last only one day or be for one month out of the year, it should last all year long. So, happy Autism Day, everyone.
I said yesterday that I would like to use this month to talk more about autism because, though most are already aware that it exists, there seems to be a lot of discourse on what autism actually is and who really qualifies for the diagnosis. Today, I wanted to start the conversation on what autism is by discussing what it is not.
First of all, you may remember me talking before about “high needs vs low needs” and how I (and many others) don’t really believe that is a good descriptor. The reason for that is that people who have what you might refer to as “high needs” autism, actually have one or more other learning and/or developmental or physical disabilities in addition to autism. While that is easily recognizable in some cases– for example someone who has both autism and downs syndrome because downs syndrome does have distinct characteristics that many people are familiar with and is a relatively well-known disorder, you would understand that not every autistic person has downs syndrome and vise versa despite that they are often found together. This may not be true of other disabilities or disorders associated with an autism diagnosis, and so those additional traits get lumped in with autism. It is understandably confusing as to where the actual line between autism and traits that may or may not be associated with autism whilst not actually being part of the diagnosis itself is drawn.
Another thing that so many people don’t realize is that the meltdowns and emotional distress that society recognizes as autism are not actually part of the diagnosis at all. When autistic adults and children are in an environment that is suited to them and in which they are able to effectively communicate their own needs (which may require the use of AAC [Augmentive and Alternative Communication] for some) this seemingly erratic behavior disappears.
Take away anyone’s ability to communicate about their needs, sensory issues, pain level, fear, or frustration and you are likely to get the same reaction from them as well. It’s not an autistic trait, it’s a human reaction to a breakdown in the lines of communication. And when you consider that what an autism diagnosis is actually symbolizing is a difference in the way an autistic person’s brain receives and interprets information, it becomes very clear that autism isn’t some enigmatic mystery to be solved, it is a difference in communication style and ability and therefore, bridging the communication gap is where we need to start. And that is what I am hoping to do in these upcoming weeks.
Autism awareness is crucial, but acceptance should be a continuous effort, not limited to a single day or month. The distinction between “high needs” and “low needs” autism can be misleading, as additional disabilities often complicate the diagnosis. It’s important to understand that autism exists on a spectrum, and each individual’s experience is unique. The conversation about what autism is—and isn’t—helps to clarify misconceptions and foster understanding. How can we better support individuals with autism throughout the year, not just during awareness campaigns?
That’s one of the things this blog seeks to achieve. There are also a multitude of social media personalities, most of whom are also on the spectrum, who daily bring awareness and acceptance. It is somewhat of a double-edged sword, however, as everyone experiences autism differently, and some things that they discuss are often misleading and sometimes even inaccurate because, as the person with the experience, it’s sometimes difficult to know for sure where one’s autism ends and the just being a person existing in the world begins.
This is a thoughtful and important discussion about autism and the nuances of its diagnosis. It’s crucial to move beyond awareness and focus on acceptance and understanding throughout the year. The distinction between autism and other associated disabilities is often misunderstood, which can lead to confusion. How can we better educate people to recognize autism as a spectrum without conflating it with other conditions?
The difficulty there is the realization that autism is actually an umbrella term for several conditions that all manifest similar responses in the brain. That’s the reason it can look so different from one person to the next, but also the reason that people will likely continue to associate it with other conditions. For me, personally, I want to focus on trying to separate the actual symptoms of autism (social and emotional communication differences, executive functioning issues) from the manifestations that result from accommodations not being met (eg: meltdowns) as these are not necessarily due to autism itself, but from the trauma associated with not being able to communicate needs or have them met, even when they are communicated.