What Disorder? Neurodiversity, Autism, and ADHD
Let's talk about language! Autism and ADHD are both known as neurodevelopmental “disorders.” But is “disorder” really the best way to refer to autism and ADHD, given the scientific body of research indicating autism and ADHD are examples of natural genetic variation? So how can we talk about autism and ADHD as examples of neurodivergence, but not disorders? Listen to learn more about neurodiversity, autism, and ADHD.
- You can learn more about the ICD at WHO's website here.
- Here's a study on autism and communication that I reference.
Looking for a transcript? I got you!
Welcome to Neurodiverging, I’m Danielle, and today I want to talk about language in the disability community, and neurodiversity. Autism and ADHD are both known as neurodevelopmental “disorders”. I sometimes use that language on my blog and in this podcast because it is the accepted medical terminology, the word most often used in educational settings, and honestly, the word most people are searching for when they’re looking for ASD or ADHD information.
But is “disorder” really the best way to refer to autism and ADHD?
Before we get into that, I want to remind you that there is a new article on the blog every week, and the most recent one is my 4 ways to crush it with picture schedules. If you’ve heard of visual schedules but aren’t sure how they work, or if you do use them already but would like some more ideas and examples, head on over to neurodiverging.com and check that post out. And leave a comment or tell a friend! I appreciate your support.
So now, let’s get into it: Why are ASD and ADHD disorders? Are they disorders? What’s going on here?
I’d like to talk about what a “disorder” even is, first. What do doctors, teachers, and other professionals mean when they refer to ADHD or autism as disorders?
Well, they’re talking about a classification system. The International Classification of Disease, which you may have seen shortened to the ICD, is a method of classifying diseases, injuries, and causes of death. The World Health Organization (WHO) publishes the ICDs to standardize the methods of recording and tracking cases of diagnosed disease all over the world, which makes it possible to do research on diseases, causes, and treatments. WHO has been publishing ICDs since 1962.
So right away, we can see that having some kind of common classification system could be really helpful for science, just to make sure one group studying autism is actually studying the same thing as another group studying autism across an ocean.
But this is definitely more about the need for study or diagnosis by the professional class, rather than something that’s useful for the individual with autism or ADHD on the ground.
So, how does the ICD actually define neurodevelopmental “disorders” like autism and ADHD? The ICD-10 has a block of these disorders which must have the following in order to be diagnosed:
a) the onset or beginning of seeing the disorder happens during infancy or childhood;
b) There is some kind of impairment or delay in the development of functions that are in some way strongly related to the biological maturation (the growth) of the central nervous system. Functions in this case might include language, visual-spatial skills, and motor coordination.
and (c) that the disorder shows a steady course without remission or relapse
This block in the ICD-10 is called "Specific Disorders of Psychological Development", and it includes developmental language disorder, learning disorders, motor disorders and autism spectrum disorders. ADHD is included as more specifically a neurodevelopmental disorder.
Developmental disorders are present from early life. There is a strong genetic component; more males are afflicted than females.
So, again, the word disorder is basically used in this context to mean “not normal”. For physicians, it can be important to have a sense of what exists in the range of normal and what does not - think of a healthy cell versus a cancerous cell, or someone whose blood doesn’t clot versus someone whose blood clots correctly. There is a sense where it’s important for a professional to be able to tell the difference.
But a blood clot or an individual cell is a component of a physical body. It’s not a person. And many people with autism or ADHD claim these as identities. I am autistic, not an abnormal regular person, right? But why? How is ADHD not a disorder?
Well, we have to go back to episode 101 on Neurodiversity. Neurodiversity is the movement within the disability community to say, hey, neurodivergent brains are just a genetic variation within the human community, and thus just as valid in how they work compared to neurotypical brains.
Neurodivergent and neurotypical brains all deserve to have a world that works for them, where they are allowed and supported to thrive. In fact, we know that autism and ADHD are largely genetic in origin, something between 50-90%. Autism is an example of natural variation.
Autism and ADHD are human phenotypes.
But that’s not the current approach to autism and ADHD from most medical professionals, therapists, and educators (though in many areas, this is improving). Medical perspective and language presents autism as a disease or deficit - autism spectrum disorder, attention deficit hyperactive disorder.
They are framed as disabilities, and neurodivergent folks often have to hear ourselves described in terms of what we lack, versus, where we excel. We hear words (and use words) like risk, disease, disorder, impairment, deficit, etc.
And, just to be clear, I would argue personally that autism is a disability in the sense of structural disability; that is, the world is not made for folks with autism. We are disabled by institutions that are not created with us in mind.
But that doesn’t mean that our bodies and brains themselves are disabled, just that disability is created within us by the structures of the world. So, I use disability theory and, as I said before, words from the deficit model sometimes in my blog or in this podcast as I feel they are useful.
Because in certain contexts, being autistic does feel like a deficit, in certain social structures. But autistic people are not deficient people just because we’re autistic.
So the problem with wording here mostly comes down to the fact that a lot of us want to be able to be equal as divergent, but not as disabled. But there’s not a lot of language popularized throughout society that makes that mission easy to talk about.
Thinking through the language and what we actually mean when we call something a disorder is just the first step toward getting to a place where we can be neurodivergent and yet as able as neurotypical folks.
Diagnosed or not, an autistic person knows they are different and has the right to know they belong to a distinct minority group. 75% of autistic people are verbal and learning disability is distinct from autism. Most people will know an autistic person but may not know that they are autistic.
Autistic people are human beings; genetically and neurologically distinct, but thinking and feeling people with strengths and challenges outside of average and divergent intuitive learning and communication styles.