If you have a child with autism, you may have heard a lot of discussion lately about autism levels and terms like “high functioning”, “low functioning”, ‘profound’ or even “it used to be called Asperger’s” …etc It can be confusing—and sometimes the conversation can feel more divisive than helpful, especially if you look on social media.
The simplest way to understand it is this: autism is a spectrum, but the spectrum is not a straight line from “a little autistic” to “a lot autistic.” Instead, the current diagnostic system describes autism using three support levels: Level 1, Level 2, and Level 3. These are intended to describe how much support a person need across various categories of skills. Support can look very different from one person to another. For example, one autistic person may speak fluently, attend college, and live independently while still needing significant support with social situations, sensory challenges, executive functioning, or daily routines. Another person may have very limited communication, significant intellectual or medical needs, and require substantial support throughout the day. Some want to find a way to quantify / distinguish between these differences.
This is where the conversation around profound autism comes in.
Some parents, professionals, and advocates use the term profound autism to describe autistic individuals with very substantial support needs—often including limited or no functional spoken language, significant intellectual disability, dependence on others for many activities of daily living, and/or serious behavioral or medical challenges. The divide, however, comes into play because some believe that creating a ‘new’ category of autism can re-route funding, create insurance nightmares, and/or reinforce the idea that some people are “more autistic” than others.
At Mindful Play, we use the levels to better understand a person’s needs on a broad context — not determine their worth or limit what we believe is possible. And, once they are a client, we work with that person based on their own specific needs. Not the needs of “Level 2 clients” or “Level 1 clients,” but instead the needs of Sally, Juan or Suzanna and, of course, their families.
Rather than asking, “How autistic is this child?” we ask: “What does this child need to communicate, learn, participate, be safe, and have a meaningful life?”
That question keeps the focus where it belongs: on the individual.
So while others fight about labels and categories, we will be over here working our booties off with our clients. One at a time. Autism looks different from person to person. So should our supports. And whether we use the words Level 1, Level 2, Level 3, profound autism, or no label at all, the goal should remain the same: understanding each person well enough to provide the right support while recognizing their strengths, preferences, dignity, and potential.