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Key points
- Neurodiversity-affirming language represents a positive shift in how autistic people express themselves.
- Some people prefer to adopt a medical model to discuss their, or their children’s, autism.
- Making room for all autistic people’s viewpoints is essential to avoid silencing autistic people.
In an online attack, I was recently accused of being "dangerous and damaging" to the autistic community. Why? Because I used the phrase "level 1 autism" which was, I was informed, "outdated and ableist."
As an autistic woman and mother of an autistic son, I consider myself a neurodiversity advocate. Much of my time is spent helping people to accept, normalise, and embrace their autistic traits and experiences and encouraging them to ask for accommodations that help them adapt the world around them to their needs or differences.
But this doesn't mean I reject the fact that there are vastly differing experiences of autism and that people, including parents of autistic children, should be allowed to choose language that makes sense to them and fits with their values without risking being silenced for doing so.
Levels of Autism
Per the DSM, there are three levels of autism. Level 1 autism includes people of average or above-average intelligence who can lead largely independent lives. Level 2 autism includes people who need higher levels of support, and level 3 autism includes people who need significant support. Since changes to the DSM in 2013, people who would previously have been diagnosed with Asperger's syndrome have been diagnosed with level 1 autism.
From a personal perspective, when I was going through the research and diagnostic process a few years ago, the levels of autism made, and continue to make, complete sense to me. My experience of being autistic contrasts significantly with someone with level 2 or 3 autism. My experience of parenting a child who will, one day, be able to leave home and be financially independent and have a range of options available to him is also completely different from someone who is parenting a child who will always require a significant level of support.
It doesn't mean my experience is "better"—having level 1 autism comes with a substantial series of challenges—but it means that it is significantly different. Having the vocabulary to express that difference, particularly to people who know very little about autism, is important to me.
It's also important to most of my clients, who are predominantly adult women seeking out a diagnosis later in life. When I explain what autism is, or when they have conducted their own research, they can identify with other autistic people who, like them, have led a life so far which has allowed their autism to go undetected. It also provides them with the vocabulary to talk to employers or access a level of therapeutic support appropriate for their needs.
Medical Model
While the "medical model" of autism is criticised for identifying autism as a disorder characterised by deficits or impairments, it provides a voice for some parents of autistic children who are severely impacted by autism. It also provides a voice for people not in a position to view autism positively.
Some of my clients cannot cope in their jobs, even with appropriate accommodations. They struggle with the demands of daily life, including parenting and running households. Many have anxiety, depression, and other mental health conditions. They may have sought a diagnosis to access disability benefits and support.
Some also find that medicalising their condition, through their use of language, helps them acknowledge the devastating impact it has had on their life. Symptoms like severe and potentially violent or self-injurious meltdowns, perseverative thinking, executive function issues, extreme distress around change, sensory processing issues—sometimes to the point of being unable to sit in a classroom or restaurant—consistent anxiety, and a need for sameness affect autistic people daily. Calling for language that "neutralises" their experience—to the point where it is unacceptable for them to talk about autism in terms of severity or disability—reduces their means of expression. If someone finds it more accessible to talk in terms of autistic symptoms that they feel are limiting, disabling, or severe, they should have the right to do so.
Neurodiversity-affirming language represents a generally positive shift for many autistic people. But those who choose to think and talk about their, or their children's, experience in ways which draw more heavily on a medical model, or which stress the negative impacts of autism, should be allowed to do so. If we replace one exclusionary discourse with another, we're simply silencing an entire section of the autistic community.
