Autistic Rational Demand Avoidance


Is the PDA Autism profile helpful, or does it further pathologize Autistics?

PDA vs RDA

PDA stands for Pathological Demand Avoidance, whereas RDA stands for Rational Demand Avoidance. I’ll explain what each means and why one approach may be more beneficial and accurate than the other.


The two key features of PDA are:

  1. Intolerance of uncertainty, and
  2. Extreme avoidance of basic demands.

This extreme avoidance extends to the basic demands of everyday living, not just the avoidance of unpleasant, difficult, specific anxiety-provoking or unappealing tasks.

Someone with a PDA profile may also have tremendous difficulty complying with their own self-imposed expectations and with doing things that they really want to do.


The distinctive features of a demand avoidant profile include:
  • Resists and avoids the ordinary demands of life.
  • Uses social strategies as part of avoidance, for example, distracting, giving excuses.
  • Appears sociable, but lacks some understanding.
  • Experiences excessive mood swings and impulsivity.
  • Appears comfortable in role play and pretence.
  • Displays obsessive behaviour that is often focused on other people.

People with this profile can appear excessively controlling and dominating, especially when they feel anxious. However, they can also be confident and engaging when they feel secure and “in control*”.

Anxiety quite often presents as controlling behaviour, irritability, and yes — avoidance.

It’s important to acknowledge that people with PDA have a hidden disability. Every neurodivergent person lives with an invisible disability. Just because we cannot directly see its impact does not mean it doesn’t exist.


But wait!

When clinicians or other adults use the term “in control”, what they are often insinuating is the person is being manipulative and controlling.

If we replace the word control with autonomy, agency, independence, self-determination, and respect — well, that paints a very different picture.

While autism comes with many assets and strengths, the lack of acceptance and accommodation in our society leads me to identify myself as Disabled — not by my Autistic brain, but by society’s lack of understanding.

PDAers, especially children, are often given unhelpful, stigmatizing labels such as noncompliant, stubborn, difficult, oppositional, defiant, manipulative, unmotivated, uncooperative, etc.


Pathological or rational?

Other Autistic experts, such as Damian Milton and Richard Woods, have redefined PDA as Rational Demand Avoidance (RDA).

RDA is described as an understandable and rational response to demands which cause distress, anxiety, discomfort, or are overwhelming to the individual.

In their recent paper, Autistic researcher Allison Moore explains that when Autistic people do exercise agency and engage in self-advocacy, we are at risk of being labelled demand avoidant.

Autistics are less likely to concern ourselves with social norms, and when we engage in independent decision making that resists or challenges these neuronormative expectations, we are more likely to attract the PDA label.

In their own paper, the person who coined the term PDA describes PDAers as Autistics who have an atypical and surface-level “degree of sociability that allowed social manipulation as a major skill”.

One definition of manipulation is to control or play upon by artful, unfair, or insidious means especially to one’s own advantage.

Insidious is something which is subtle yet harmful — so labelling someone with PDA is to assume their social skills are only developed such that the person uses them to get their way at the expense of others.


Take what you need from it

Some Autistics have found the PDA profile tremendously helpful. Some parents of Autistic children have also expressed relief at finding an autism subtype (although it is not a formal diagnosis) that accurately describes their child.

If you’re an allistic (non-Autistic) parent of an Autistic child, I urge you to proceed with caution and critical thinking, please. While it can be incredibly validating to find something that fits your experience, take care not to pathologize reasonable avoidance of demands which cause distress.

As Moore explains, many Autistics experience incredible sensory sensitivities. If a child is resisting attending school, or avoiding an activity or environment that is loud, crowded, or one which has bright lights or strong smells, this sensory input may genuinely cause the child physical or psychological distress.

Trying to avoid demands which cause anxiety, confusion, or are overwhelming is a perfectly reasonable response.

Image created by author — based on work by Milton (2012)

Assumptions vs understanding

If you’re a neurotypical person reading this, try to think of something that causes you to feel similarly.

If you were lactose intolerant, for example, and consuming dairy products caused you extreme physical discomfort, wouldn’t it be reasonable to avoid doing so?

I have Celiac disease (CD) and eating anything which contains gluten causes me serious health issues. If someone were demanding I eat a sandwich made with wholewheat bread, it would be entirely understandable for me to “refuse” — to be uncooperative, noncompliant, or defiant.

Yet knowing that I have CD, it would seem unfair for someone to call me difficult or manipulative, or to pathologize my avoidance of gluten. Yet this is exactly what happens to Autistics on a regular basis, whether under the umbrella or PDA, or one of many other unhelpful and unfair labels.

Behaviourally-based diagnoses such as ADHD, autism, PDA, O.D.D., and others are based on neurotypical assumptions about how one should behave.

Image created by author — study by Crompton et al. (2020)

Assessments include questionnaires which, for children, are usually filled out by parents or guardians (who are often themselves neurotypical). The answers to the questions are given based on the neurotypical adult’s interpretations of the child’s behaviour.

A neurotypical person may have difficulty understanding the reasons for an Autistic person’s behaviour they perceive as unusual, just as an Autistic would have difficulty understanding a neurotypical’s behaviour they perceive as unusual.

Because allistic people struggle to understand Autistics (mostly because they won’t listen to us, but I digress) does not automatically mean Autistic “behaviours” are pathological.

Different does not equal deficient.

© Jillian Enright, Neurodiversity MB


When you join medium, as a member you’ll have access to unlimited reads for only $5 per month. If you use my referral link, I’ll earn a small commission, and you’ll earn my undying gratitude.

If you’d prefer give a one-time tip, you can support my writing on Ko-Fi — also, it’s free to follow me on Facebook!


Related Articles

Anxiety: It’s Not How It Looks

Stop Calling Children “Defiant”

Most Social Norms Are Arbitrary

Communication Differences Are Not Deficits

Autistic People Are Not Emotionless Robots


References

Milton, D. (2013). ‘Natures answer to over-conformity’: deconstructing Pathological Demand Avoidance. Autism Experts. [Online]. https://kar.kent.ac.uk/62694

Damian E.M. (2012). On the ontological status of autism: the ‘double empathy problem’. Disability & Society, 27(6), 883–887. https://doi.org/10.1080/09687599.2012.710008

Moore, A. (2020). Pathological demand avoidance: What and who are being pathologised and in whose interests? Global Studies of Childhood, 10(1), 39–52. https://doi.org/10.1177/2043610619890070

Newson, E., Le Maréchal, K., & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of disease in childhood, 88(7), 595–600. https://doi.org/10.1136/adc.88.7.595

Williams, R. (2018). Autonomously Autistic: exposing the locus of autistic pathology. Canadian Journal of Disability Studies 7(2), 60–82. https://doi.org/10.15353/cjds.v7i2.423

Woods, R. (2018). Rational (Pathological) Demand Avoidance: what it is not, what it could be & what it does. Critical Perspectives on Pathological Demand Avoidance (PDA). [Keynote Speech]. Participatory Autism Research Collective. https://openresearch.lsbu.ac.uk/item/8v10w

I Never Thought I’d Want To Be An Online Content Creator


I love to write, but I’m really starting to enjoy creating content for social media as well

Anti-social

I was anti social media (also just anti-social) for a long time. I’ve always had social media accounts, just the basics, for keeping in touch with friends and family. We moved provinces 15 years ago, so it was a way to share memories and updates.

Then I started my own business, and an online presence became essential. My business doesn’t really require an Internet connection to run successfully, but in order for new clients and customers to find you, one must have a strong online presence.

Over the past year and a half, I’ve worked really hard to increase my following, as they say (do they say that?). When Covid took a serious toll on my business, I turned to Medium, and began writing in earnest.

To help my articles get seen, I started creating cool content for social media to go along with the stories I share. I got a Canva premium account and started making infographics, reels, and even memes (do people still share memes these days?).

I’ve been getting a lot more traffic on my Facebook page, and am receiving a lot of comments and messages complimenting my work and the content I’ve shared.


That got me thinking

I’m really enjoying making and sharing this important information, helping people better understand and appreciate neurodiversity, could I possibly earn a bit of income from that as well?

Why not give it a go?

The Simpsons created by Matt Groening — (image created by author)

Apparently I need at least 1,000 followers for a minimum of two months in order to qualify. I am so very close to this goal: I currently have 967 followers on my Facebook business page — only 33 more to go!

So here I am, unabashedly asking for social media followers, something I never thought I would ever do.

October is ADHD Awareness Month, which means there’s going to be a lot of fantastic ADHD-related content coming up, so stay tuned!


About the author

Jillian has been a Neurodiversity advocate, ADHD coach, and tutor in Manitoba since 2017.

Jillian holds a Social Services diploma, a degree in Psychology, and more than 20 years of experience in the social services and mental health fields.

Jillian has been providing private advocacy, tutoring, and support services since 2017, and writing on Medium since 2019.


Related Articles

It’s not a superpower, but it makes me one hell of an entrepreneur

My ADHD Diagnosis Took More Than Three Decades

Writing for Love and Money


When you join medium, as a member you’ll have access to unlimited reads for only $5 per month. If you use my referral link, I’ll earn a small commission, and you’ll earn my undying gratitude.

If you’d prefer give a one-time tip, you can support my writing on Ko-Fi — also, it’s free to follow me on Facebook!

Why OCD Is Considered Highly Comorbid With ADHD


What Obsessive Compulsive Disorder, ADHD, and Autism have in common

What is O.C.D.?

The DSM-V lists the following criteria for diagnosing O.C.D.:

  1. Recurrent and persistent thoughts, urges, or images that are experienced, at some time during the disturbance, as intrusive, unwanted, and that in most individuals cause marked anxiety or distress.
  2. The individual attempts to ignore or suppress such thoughts, urges, or images, or to neutralize them with some thought or action (i.e., by performing a compulsion).
  3. Repetitive behaviours (e.g., hand washing, ordering checking) or mental acts (e.g., praying, counting, repeating words silently) that the person feels driven to perform in response to an obsession, or according to the rules that must be applied rigidly.
  4. The behaviours or mental acts are aimed at preventing or reducing distress or preventing some dreaded event or situation. However, these behaviours or mental acts either are not connected in a realistic way with what they are designed to neutralize or prevent or are clearly excessive.
  5. The obsessions or compulsions are time-consuming or cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.
Created by author

Challenging a common myth about OCD

O.C.D. is not always “I have to wash my hands and check locks constantly”, although these certainly can be compulsions people feel compelled to perform.

O.C.D. is also:

  • Intrusive thoughts
  • Needing things to be a certain way (i.e. symmetry, order, checking)
  • Feeling as though one’s thoughts or actions will cause bad things to happen

OCD is believed to be a common comorbid condition in people with ADHD and is associated with persistent thoughts and urges that cause marked anxiety or distress.

Although more recent research is beginning to challenge these assumptions, I will describe here some of the similarities and differences between ADHD, autism, and OCD, and explain how they overlap.


Executive Dysfunction

It seems we cannot escape it

The most significant commonalities across OCD, ADHD, and Autism are executive functioning deficits.

Many Neurodivergent (ND) folks struggle with cognitive rigidity, which can cause us to become stuck on certain thoughts or events. Many Autistics struggle with black-and-white thinking, perseverance, and difficulty with change.

I personally don’t like how perseverance is described as an attribute when discussing neurotypical (NT) people, yet considered a weakness when discussing ND people, particularly Autistics.

Yes, becoming stuck can be extremely debilitating and distressing at times, but this is not always the case. Hyperfocus and perseverance can lead to incredible productivity and can help us continue working towards a goal in the face of challenges.

This feeling “stuck” can also cause what looks like inattentive behaviour in people with OCD who do not have ADHD.

If your mind is stuck on a past event or a particular thought or worry, it can be difficult to focus on what is happening in the present, causing the appearance of inattention.

However, with ADHD the difficulty is regulating one’s attention. We are easily distracted because our attention can be pulled in many different directions at once, and our brains have difficulty prioritizing which to attend to.

Created by author

Compulsions, impulsivity, and perseveration

Impulsive behaviour refers to actions performed without consideration of the consequences. When we act without thinking through the potential results of our choices, we are being impulsive. If we behave impulsively, we may not even understand why we did what we did.

Compulsive behaviours, on the other hand, are actions one feels compelled to do. These are conscious, intentional acts or behaviours performed in attempts to alleviate fear, anxiety, or stress.

Perseveration is an interesting one. When you look up perseverance, you find the definition “continued effort to do or achieve something despite difficulties, failure, or opposition”.

When you look up the word perseveration on its own, you can find a similar (albeit verbose) definition: “a process that involves lengthy sequences of integrated functions including sustained attention, information processing, and purposeful, planned activity to achieve a goal or solve a problem”.

That’s a pretentious way of saying working hard to achieve something in spite of challenges.

When you look up autistic perseveration, the search returns articles about the problems caused by perseveration, and how to “deal with” or manage perseveration.

Autistic perseveration includes repetitive thoughts, repeating words or phrases (echolalia or verbal stimming), and repetitive motions, movements or behaviours (physical stimming).

Whereas repetitive thoughts and behaviours in those with OCD tend to increase stress and anxiety, Autistic perseveration has been shown to reduce the incidence of depression, and partially mediate symptoms of rejection sensitive dysphoria (RSD).


Opposites attract

Recent research continues to expand upon the similarities and differences in the brains of those with ADHD and those with OCD.

In OCD, it appears over-activity in the cortico-striatal-thalamic-cortical loop (CSTC), which is involved in habit-forming, reward, movement execution, and impulse control.

It is believed this over-activity contributes to obsessive thoughts and repetitive behaviours in those with OCD.

In contrast, ADHD is associated with under-activity in the prefrontal and striatal regions, which lead to difficulty regulating one’s attention, impulsivity, and other executive functioning deficits.

Created by author, based on work by Cabarkapa, et al.

More similarities than differences

It seems as more research is being done on divergent neurotypes such as autism, ADHD, OCD, etc., the more similarities these studies uncover.

In particular, it’s well understood that executive dysfunction plays a significant role in many — if not all — of these neurotypes. The differences lie in how these neurological and developmental changes manifest in each individual.

While it is important to differentiate between these neurologies in order to understand which supports and accommodations may be most helpful, we shouldn’t lose sight of the common traits and characteristics we share.

Most importantly, we should forget the importance and power of our combined voices when we advocate for ourselves and others. The more those of us with lived experience share our knowledge, the better we will be understood and appreciated by the general population.

© Jillian Enright, Neurodiversity MB


When you join medium, as a member you’ll have access to unlimited reads for only $5 per month. If you use my referral link, I’ll earn a small commission, and you’ll earn my undying gratitude.


Strategies for Managing Executive Functioning Challenges

ADHD, the Gift that Keeps on Giving!

Stimminy Cricket: Everybody Stims


References

Abramovitch, A. (2016). Misdiagnosis of ADHD in Individuals Diagnosed With Obsessive-Compulsive Disorder: Guidelines for Practitioners. Current Treatment Options in Psychiatry 3, 225–234. https://doi.org/10.1007/s40501-016-0084-7

Abramowitz, J. S., & Jacoby, R. J. (2014). Obsessive‐compulsive disorder in the DSM‐5. Clinical Psychology: Science and Practice, 21(3), 221–235. https://doi.org/10.1111/cpsp.12076

Báez-Mendoza, R., & Schultz, W. (2013). The role of the striatum in social behavior. Frontiers in neuroscience, 7, 233. https://doi.org/10.3389/fnins.2013.00233

Brem, S., Grünblatt, E., Drechsler, R. et al. (2014). The neurobiological link between OCD and ADHD. ADHD Attention Deficit Hyperactive Disorders 6, 175–202. https://doi.org/10.1007/s12402-014-0146-x

Cabarkapa, S., King, J. A., Dowling, N., & Ng, C. H. (2019). Co-Morbid Obsessive-Compulsive Disorder and Attention Deficit Hyperactivity Disorder: Neurobiological Commonalities and Treatment Implications. Frontiers in psychiatry, 10, 557. https://doi.org/10.3389/fpsyt.2019.00557

Çelebi, F., Koyuncu, A., Ertekin, E., Alyanak, B., & Tükel, R. (2020). The Features of Comorbidity of Childhood ADHD in Patients With Obsessive Compulsive Disorder. Journal of Attention Disorders, 24(7), 973–980. https://doi.org/10.1177/1087054716669228

Guzick, A. G., McNamara, J. P. H., Reid, A. M., Balkhi, A. M., Storch, E.A., Murphy, T. K., Goodman, W. K., Bussing, R., Geffken, G. R. (2017). The link between ADHD-like inattention and obsessions and compulsions during treatment of youth with OCD. Journal of Obsessive-Compulsive and Related Disorders 12, 1–8. https://doi.org/10.1016/j.jocrd.2016.11.004

Ibrahim, L., Abouhendy, W., Raafat, N., Fouad, A. (2020). Prevalence and correlates of attention deficit hyperactivity disorder in obsessive-compulsive disorder patients. Middle East Current Psychiatry 27, 3. https://doi.org/10.1186/s43045-019-0007-6

Keenan, E. G., Gotham, K., & Lerner, M. D. (2018). Hooked on a feeling: Repetitive cognition and internalizing symptomatology in relation to autism spectrum symptomatology. Autism : the international journal of research and practice, 22(7), 814–824. https://doi.org/10.1177/1362361317709603

Mersin Kilic, S., Dondu, A., Memis, C. O., Ozdemiroglu, F., & Sevincok, L. (2020). The Clinical Characteristics of ADHD and Obsessive-Compulsive Disorder Comorbidity. Journal of Attention Disorders, 24(12), 1757–1763. https://doi.org/10.1177/1087054716669226

Rădulescu, A., Herron, J., Kennedy, C., Scimemi, A. (2017). Global and local excitation and inhibition shape the dynamics of the cortico-striatal-thalamo-cortical pathway. Scientific Reports 7, 7608. https://doi.org/10.1038/s41598-017-07527-8

Why ADHD And Autism Can Look Like Trauma


They are more connected and similar than you may think

Near the end of last year, I wrote an article outlining many of the ways in which we understand ADHD to be primarily caused by genetics. My writing was sparked by Gabor Maté’s insistence that ADHD is caused by trauma.

It’s not.

There’s no evidence of a causal link, but there is a correlation.

Dr. Maté is a well-respected expert in understanding the impacts of trauma but is not an expert on ADHD. Regardless, I am certain Dr. Maté’ took psychology 101 and knows full well correlation does not equal causation.

Having outlined evidence of a strong genetic component in the development of ADHD, and an estimated heritability rate between 75–80%, I now want to explain why someone might conflate ADHD, autism, and trauma.

Namely, I’ll explain why there are so many similarities, and how one can look like the other.

Created by author

Difficulty concentrating

Both trauma and ADHD cause difficulty concentrating, but of course, the underlying mechanisms are significantly different.

In ADHD trouble focusing is caused by difficulty regulating our attention. If a group of people is gathered in a classroom for a lesson or conference room for a meeting, and a minor distraction occurs just outside the door, those with ADHD will have a greater challenge ignoring it.

Neurotypical people — those without ADHD — will more easily maintain their focus on the meeting or lesson, and are much less likely to be distracted.

After a person with ADHD has diverted their attention to something else, it’s also much more difficult for us to return our attention to the original task, especially if it’s not something we find terribly interesting.

With trauma difficulty concentrating is more often due to anxiety, intrusive thoughts, and distressing memories.


Trouble sleeping

Sleep issues are extremely common amongst Autistics and those with ADHD. This can be caused by multiple factors, including sensory modulation issues (i.e. heightened sensory sensitivities and SPD), circadian rhythm issues such as delayed sleep phase syndrome, and insomnia.

Sleep issues related to trauma are frequently caused by nightmares, flashbacks, anxiety, and intrusive thoughts or memories.


Impulsivity

This one is very interesting. Impulsivity in autism and ADHD is usually caused by a delayed maturation of the brain, in particular the Prefrontal Cortex (PFC).

Created by author

Prolonged stress, or trauma, cause our amygdala to become overactive. The amygdala is the part of the brain which responds to perceived threats and is activated when we feel fear and anxiety.

Part of the role of the emotion centre of the brain (the amygdala and its colleagues in the limbic system) is to tell the PFC to temporarily stand down.

The PFC is responsible for mental tasks like logic, reasoning, and impulse control — tasks that are not needed if our life is thought to be in danger. Our brain reverts to something we often call “fight or flight” mode, where survival instincts kick in.

Understandably, when we experience our environment — or people in that environment — as unsafe we become hypervigilant, on alert for danger, so we can take action to keep ourselves safe.

If our amygdala is frequently (or constantly) on the field searching for signs of danger, then our PFC spends more time on the bench than getting to do its job.

Created by author

In sum, a benched PFC means less mental energy exerted to control our impulses, and more brain power being spent reacting to perceived threats in the environment.


Emotional intensity

When we’ve experienced prolonged distress or trauma, our emotions tend to either become “blunted” (we put up emotional walls to protect ourselves from the painful experiences) or heightened.

Another form of impulsivity is emotional impulsivity. Heightened emotional responsiveness will cause our amygdala to run on overdrive, reacting to neutral or minor problems as though they were clear and present dangers.

When we encounter a potentially upsetting situation, but our PFC is online, we can often reason with ourselves, using logic to temper our emotions and prevent ourselves from reacting in a way we might later regret.

When our PFC is under-developed due to a neurodevelopmental disorder, or our PFC is on the bench due to trauma response, we are much more likely to experience intense emotions and respond impulsively.

The result is similar, but the causes are markedly different.

© Jillian Enright, Neurodiversity MB


When you join medium, as a member you’ll have access to unlimited reads for only $5 per month. If you use my referral link, I’ll earn a small commission, and you’ll earn my undying gratitude.


Related Articles

Yes, ADHD is Genetic

ADHD Increases PTSD Risk

Sleep Issues in ADHD & Autism


References

Baxter, M. G., & Croxson, P. L. (2012). Facing the role of the amygdala in emotional information processing. Biological Sciences, 109(52), 21180–21181. https://doi.org/10.1073/pnas.1219167110

Center for Substance Abuse Treatment (2014). Trauma-Informed Care in Behavioral Health Services. Substance Abuse and Mental Health Services Administration. (Treatment Improvement Protocol (TIP) Series, №57.) Chapter 3, Understanding the Impact of Trauma. Available from: https://www.ncbi.nlm.nih.gov/books/NBK207191

Fadeuilhe, C., Daigre, C., Richarte, V., Grau-López, L., Palma-Álvarez, R. F., Corrales, M., & Ramos-Quiroga, J. A. (2021). Insomnia Disorder in Adult Attention-Deficit/Hyperactivity Disorder Patients: Clinical, Comorbidity, and Treatment Correlates. Frontiers in psychiatry, 12, 663889. https://doi.org/10.3389/fpsyt.2021.663889

Faraone, S.V., & Larsson, H. (2019). Genetics of attention deficit hyperactivity disorder. Molecular Psychiatry 24, 562–575. https://doi.org/10.1038/s41380-018-0070-0

Harris, N. B. (2019). The Deepest Well: Healing the long-term effects of childhood adversity. First Mariner Books.

Hohn, V. D., de Veld, D., Mataw, K., van Someren, E., & Begeer, S. (2019). Insomnia Severity in Adults with Autism Spectrum Disorder is Associated with sensory Hyper-Reactivity and Social Skill Impairment. Journal of autism and developmental disorders, 49(5), 2146–2155. https://doi.org/10.1007/s10803-019-03891-8

Mimouni-Bloch, A., Offek, H., Engel-Yeger, B., Rosenblum, S., Posener, E., Silman, Z., Tauman, R. (2021). Association between sensory modulation and sleep difficulties in children with Attention Deficit Hyperactivity Disorder (ADHD). Sleep Medicine, 84, 107–113. https://doi.org/10.1016/j.sleep.2021.05.027

Perry, B. & Winfrey, O. (2021). What Happened To You? Conversations on trauma, resilience, and healing. Flatiron Books.

Sciberras, E. (2022). Sleep in Individuals with ADHD: Prevalence, Impacts, Causes, and Treatments. In: Current Topics in Behavioral Neurosciences. Springer. https://doi.org/10.1007/7854_2022_336

Van Der Kolk, B. (2014). The Body Keeps Score: Brain, mind, ad body in the healing of trauma. Penguin Books.

My Top Stories from August & September


My five best-performing articles from the past two months

Featured

I am very excited to share that one of my articles was selected as a Staff Pick right here on Medium!

This is particularly timely and important because I spent the entire summer camping (therefore not working, therefore not earning an income), so I’m working really hard to try to replace that missing income with earnings from my writing.

I’m so grateful to have been selected, and am grateful for everyone who supports my writing. With that happy news, I will share with you my top five stories from August and September, 2022.


5) Most Social Norms Are Arbitrary

Social expectations and making room for people to just be themselves

Somewhere along the line, people have invented arbitrary ideas about what constitutes polite behaviour, and it seems people largely accept these as standards by which to live (and judge others) without much critical thought.

Being polite means not holding people to your individual ideals, and respecting that everyone’s needs and experiences differ — some may differ significantly from your own, but that does not mean one is superior to the other.

Being polite means not holding others to your individual ideals, and respecting that everyone’s needs and experiences differ.

Some social norms are perhaps helpful, but many are entirely arbitrary. Worse, some are borne of classism, ableism, and neuronormativity.


4) Autism “Levels” Are Still Functioning Labels

Both are inaccurate and useless at best, harmful at worst

The Autistic community has explained (and explained some more) how and why functioning labels are unhelpful, inaccurate, and often harmful.

Many just ignore us, but those who do listen seem to understand the words, but not the concept. Instead of using labels like “high functioning” and “low functioning”, we moved on to phrases like support needs and autism levels.

They’re the same damn thing.

This puts the spotlight on the wrong problem (as usual): the Autistics. We’re the problem because people can’t put us into neat little boxes or diagnostic categories.

We’re the problem, not the fact that Autistics (along with many other disabled and marginalized groups) can’t access the supports we need, and aren’t given the same opportunities as the majority population.

Yes, let us argue amongst ourselves about who gets which label, while the institutions which continue to oppress us continue doing so unfettered and unaccountable.

I’m sure they won’t mind.


3) Something You Should Know About Effexor

Speak to your primary healthcare provider about the possible side effects of this SNRI

A few important points before you read:

  • I am not a medical professional. Please speak to your healthcare provider if you have any questions or concerns about your medication.
  • I am not anti-medication. I take medication for anxiety and ADHD and they have improved the quality of my life significantly.
  • I do not wish to fear-monger. I still take venlafaxine daily and still believe it helps my anxiety.

Everyone will respond differently to SSRI and SNRI medications, however it is the responsibility of any prescribing physician to ensure their patient is making an informed decision.

My doctor did not do this. He did not discuss with me of the risks and benefits of my medication before prescribing it.


2) Why OCD Is (Thought To Be) Highly Comorbid With ADHD

What Obsessive Compulsive Disorder, ADHD, and Autism have in common

O.C.D. is not always “I have to wash my hands and check locks constantly”, although these can be compulsions people feel compelled to perform.

O.C.D. is also:

  • Intrusive thoughts
  • Needing things to be a certain way (i.e. symmetry, order, checking)
  • Feeling as though one’s thoughts or actions will cause bad things to happen

OCD is believed to be a common co-occurring condition in people with ADHD and is associated with persistent thoughts and urges that cause marked anxiety or distress.

Although more recent research is beginning to challenge these assumptions, my article describes some of the similarities and differences between ADHD, autism, and OCD, and explain how they overlap.


1) Why ADHD And Autism Can Look Like Trauma

They are more connected and similar than you might think

Near the end of last year, I wrote an article outlining many of the ways in which we understand ADHD to be primarily caused by genetics. My writing was sparked by Gabor Maté’s insistence that ADHD is caused by trauma.

It’s not.

There’s no evidence of a causal link, but there is a correlation.

My article explains why someone might conflate ADHD, autism, and trauma: Why there are so many similarities, and how one can look like the other.


Honourable Mention

As I mentioned, one of my articles was selected as a Staff Pick right here on Medium!

Screen shots provided by author

My Hearing Loss Is Also My Gain

Deaf culture, Deaf pride, and Deaf gain

Why it’s inappropriate to ask a Deaf person to “use their voice”.

One summer, a friend invited me to go to a Deaf hockey camp where I experienced a mixture of emotions. At first, I was overwhelmed. ASL was the first language of most of the campers. Their signing was so quick, and I had been learning for less than a year.

Once I adapted, I was enthralled. I had originally registered to stay at the camp for one week but volunteered to work the following weeks when the younger campers attended and ended up staying the entire summer. And the next, and the one after that.

I very quickly became fluent in ASL and fell in love with the Deaf community and Deaf culture. It was a relief to not have to speak, to strain to read lips or to strain to hear something that wasn’t quite loud enough. Everything was loud. Everything was visual. Everything was beautiful.

Deaf Gain has allowed me to learn a beautiful, rich, complex language. I have made amazing friends in the Deaf community and have been privileged to experience the joys of Deaf culture.

Sure, I will use my voice. I’ll use my voice to speak out against ableism, eugenics, oppression, and language deprivation.


When you join medium, as a member you’ll have access to unlimited reads for only $5 per month. If you use my referral link, I’ll earn a small commission, and you’ll earn my undying gratitude.

If you’d prefer give a one-time tip, you can support my writing on Ko-Fi.

My Hearing Loss Is Also My Gain


Deaf culture, Deaf pride, and Deaf gain

I am excited to share that this article has been featured in An Injustice! publication for Deaf Awareness Month and was selected as an Editor’s Pick on Medium !

Montreal, circa 2000

Use your voice when you talk to him,” a parent asks — no, directs me.

I am at Deaf camp. Their child is at Deaf camp.

I am 17 years old and volunteering as a camp counsellor at a sleepover camp. This week is for our youngest group of campers, aged 6–9, so there is a parent and caregiver visiting day halfway through.

We’re sitting at lunch in a noisy cafeteria, enjoying conversation in American Sign Language (ASL), the primary language at this Deaf camp. All the children are Deaf and all know ASL.

I volunteered at two different Deaf camps for several years in my early teens, and there were some commonalities I observed. For one, most children who wore hearing aids or cochlear implants (CIs) abandoned their technology within the first day, sometimes within the first few hours.


My personal experience

I’m Hard of Hearing but grew up in a mostly hearing family. My immediate family does not sign. I have 3 Deaf second cousins, two of whom are fluent in ASL, but didn’t even know this until I met them at a funeral when I was 14 years old.

I started learning sign language when a Deaf teammate joined my hockey team, I think we were 11 or 12 years old at the time. I learned ASL from her throughout the season, and we became close friends.

That summer, she invited me to go to a Deaf hockey camp, and I experienced a mixture of emotions. At first, I was overwhelmed. ASL was the first language of most of the campers. Their signing was so quick, and I had been learning for less than a year.

Once I adapted, I was enthralled. I had originally registered to stay at the camp for one week but volunteered to work the following weeks when the younger campers attended and ended up staying the entire summer. And the next, and the one after that.

I very quickly became fluent in ASL and fell in love with the Deaf community and Deaf culture. It was a relief to not have to speak, to strain to read lips or to strain to hear something that wasn’t quite loud enough. Everything was loud. Everything was visual. Everything was beautiful.


Freedom

When I saw those children free themselves of their hardware and relax into a community that totally got them, one that spoke their language and wherein everything was accessible, I understood to some extent.

Everything was loud. Everything was visual. Everything was beautiful.

It is a relief to finally be in an environment where your needs are considered first and foremost instead of as an afterthought (or sometimes not at all).

At least 90% of Deaf children are born to hearing parents — some studies have estimated the rate to be as high as 96%. Some families learn to sign, many do not. Twenty years ago (and beyond), many families were actively discouraged from using sign language with their Deaf children.

Instead, professionals instructed parents to have their children fitted with hearing aids or CIs, to engage in speech therapy, and have them learn how to read lips. This was the case for some of the children attending Deaf camps back in my youth.

Created by author

Back to Montreal

There I am, eating my lunch and enjoying conversation in ASL when the parent admonishes me for not using my voice while signing with her child. At Deaf camp. He came to camp with a CI on but quickly left it in his cabin, now mom is unhappy to see her son not wearing his CI and not practicing his speech.

There are so many reasons this is wrong.

For one, ASL is not Signed Exact English (SEE). ASL is its own complete language, with its own rich grammar and syntax. When speaking and signing at the same time, one has to muddle one (usually both) of the languages in order to make them fit together.

Think of the sentence structure when translating French to English, or any spoken language to another. They’re not word-for-word translations because they’re different languages. Such is the case for ASL and English.

Secondly, the children are at Deaf camp. They’re supposed to be having fun, enjoying their summer, and enjoying a reprieve from constantly trying to fit into the hearing world.

I get it, to some degree. The parent is worried her child won’t “succeed” in life, and won’t be able to go to university and get a job if he doesn’t know how to “function” in the hearing world. This is what parents are often told by so-called professionals who discourage parents from learning and using sign language with their Deaf children.

This is both morally and objectively wrong. Research has clearly shown that language deprivation is harmful, and learning sign language helps Deaf children achieve academic and professional success. Most importantly, Deaf children who grow up in a Deaf-affirming environment — which includes sign language — are happier and have better mental health outcomes.

Lastly, it is completely inappropriate to ask a Deaf or Hard of Hearing person to “use their voice”. They may not be comfortable doing so, they may simply not want to, and that is their choice.


Deaf Gain

Deaf Gain is a term coined in 1998 by an artist named Aaron Williamson. Deaf gain refers to the benefits we gain as a result of being Deaf — for those of us fortunate enough to be involved in the Deaf community, Deaf culture, and learn sign language.

There exists research detailing the strengths of Deaf people, but I have discovered a few things from my own personal experience. I have excellent peripheral vision, I notice things out of the corner of my eye. Although I wear glasses for reading, my peripheral vision is greater than average.

I am extremely observant and notice things others tend to miss. Despite being neurodivergent and often misreading people’s tones, my visual abilities compensate, and I am very perceptive to people’s body language and non-verbal communication.

I also notice changes in the environment, which may be a result of both my neurodivergence and being Hard of Hearing. If something has changed, however subtle or minor, I tend to notice when others would not.

Most importantly, Deaf Gain has allowed me to learn a beautiful, rich, complex language. I have made amazing friends in the Deaf community and have been privileged to experience the joys of Deaf culture.

So, sure, I will “use my voice”. I’ll use my voice to speak out against ableism, eugenics, oppression, and language deprivation.

© Jillian Enright, Neurodiversity MB


Related Stories

This Is What Ableism Looks Like

Everything, Including Deafness, is on a Spectrum

Have Hearing Aid, Will Travel


When you join medium, as a member you’ll have access to unlimited reads for only $5 per month. If you use my referral link, I’ll earn a small commission, and you’ll earn my undying gratitude.

If you’d prefer give a one-time tip, you can support my writing on Ko-Fi


References

Codina, C. J., Pascalis, O., Baseler, H. A., Levine, A. T., & Buckley, D. (2017). Peripheral Visual Reaction Time Is Faster in Deaf Adults and British Sign Language Interpreters than in Hearing Adults. Frontiers in psychology, 8, 50. https://doi.org/10.3389/fpsyg.2017.00050

Cooper A. (2019). Hear Me Out: Hearing Each Other for the First Time: The Implications of Cochlear Implant Activation. Missouri medicine, 116(6), 469–471. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6913847

Crowe, T. V. (2019). Factors Associated with Well-Being in a Sample of Deaf Adults. Journal of Developmental and Physical Disabilities 31, 285–298. https://doi.org/10.1007/s10882-018-9639-4

Fink, J. N. (2022). All Our Families: Disability lineage and the future of kinship. Beacon Press.

Hall, M. L., Hall, W. C., & Caselli, N. K. (2019). Deaf children need language, not (just) speech. First Language, 39(4), 367–395. https://doi.org/10.1177/0142723719834102

Hall, W.C. (2017). What You Don’t Know Can Hurt You: The Risk of Language Deprivation by Impairing Sign Language Development in Deaf Children. Maternal and Child Health Journal, 21, 961–965. https://doi.org/10.1007/s10995-017-2287-y

Hoffmeister, R., Henner, J., Caldwell-Harris, C., Novogrodsky, R. (2022). Deaf Children’s ASL Vocabulary and ASL Syntax Knowledge Supports English Knowledge, The Journal of Deaf Studies and Deaf Education, 27(1), 37–47. https://doi.org/10.1093/deafed/enab032

Krause, J. C., Murray, N. J. (2019). Signing Exact English Transliteration: Effects of Speaking Rate and Lag Time on Production Accuracy. The Journal of Deaf Studies and Deaf Education, 24(3), 234–244. https://doi.org/10.1093/deafed/enz013

Kusters, A. M. J. (2014). Deaf Gain and Shared Signing Communities. In H-D. L. Bauman , & J. J. Murray (Eds.), Deaf Gain: Raising the Stakes for Human Diversity (pp. 285–305). University of Minnesota Press.

Mitchell, R.E., Karchmer, M.A. (2004). Chasing the mythical ten percent: Parental hearing status of deaf and hard of hearing students in the United States. Sign Language Studies, 4(2):138–163. http://research.gallaudet.edu/Demographics/SLS_Paper.pdf

Solomon, A., & Skuttnab-Kangas, T. (2014). Deaf Gain: Raising the Stakes for Human Diversity (H.-D. L. Bauman & J. J. Murray, Eds.). University of Minnesota Press. http://www.jstor.org/stable/10.5749/j.ctt9qh3m7

Teaching Kids Mental Flexibility


Helping our children see shades of grey and improve cognitive adaptability

When our kids jump to conclusions, or are engaging in rigid thinking, it’s our natural instinct to try and explain away what we perceive as inaccurate reasoning.

We often try to logic people out of their feelings, and I have certainly been guilty of this myself. When we’re trying to teach our kids to see the world in shades of grey, to help them improve cognitive flexibility, this logic-and-reasoning approach often backfires.

So when our kids struggle to see beyond black and white, and to consider the perspectives of others, how can we help them?


Validate

How does it make you feel when you express an opinion or feeling and someone disagrees with your experience?

When I was a new mom, a fellow new mom friend and I were meeting for lunch. I think our babies were both about 8 months old and still in highchairs. As we were wrapping up, she said she had been very anxious about bringing her little one to a restaurant.

My friend confided she was afraid of her baby making a lot of noise or a big mess, and having other diners judge her to be a bad mom, or the staff thinking of her and her baby a nuisance.

We could have just left if they acted up,” I responded.

Anxiety isn’t rational, Jill,” my friend corrected me.

Right. I knew that. My response, although intended to be helpful, was invalidating and dismissive. My friend was expressing her feelings and I was trying to talk her out of them, rather than just listening and being supportive.

Oops. Luckily she’s a forgiving friend.

We do this to our kids all the time. We don’t always take them seriously because they’re kids.

Before we can help our children explore areas of grey, or explore other possibilities, first we must acknowledge and validate their experience and feelings.

Challenging someone’s perspective often puts them on the defensive, which can have the opposite of the desired affect, causing them to become further entrenched in their position. Plus, listening and trying to understand someone’s point of view is a lot nicer than telling them their feelings are wrong simply because you don’t get it.


Empathize

Along with validation, we must empathize with our children’s experiences if we want them to learn how to empathize with others.

My son is a big rule monitor. Due to black and white thinking and anxiety, he can get really stuck if he believes someone ins’t following the rules. When he gets into this rigid thinking pattern, it does no good to try to lecture or logic him out of it (and trust me, I have tried!).

I’ve learned (mostly the hard way), when our brains are stressed, or in anxiety mode, we’re unable to access the rational and reasonable part of our brain (the PFC).

Created by author

When my son starts “policing” the behaviour of others, the most important way to help settle his anxiety is for him to feel heard. Only after I’ve acknowledged and empathized with his feelings can he zoom out from his tunnel vision and see a larger picture.

He’s cheating! We’re not supposed to do that, it’s against the rules.”

That can be so frustrating when someone isn’t following the rules, I hear ya buddy.

Yeah, he’s doing it on purpose and ruining the game!

I’m sorry this makes it hard for you guys to have fun. I wonder if maybe he didn’t know that rule yet? I don’t think he’s played this game a lot before. If you explained it to him, would you both be willing to try again?

If I’d immediately chastised him for being “bossy”, or for accusing his friend of cheating when his friend is just learning to play, then the conversation becomes about me taking the other kid’s side, or my son coming up with ways to support his original thesis that the other kid was cheating on purpose.

It’s much more effective (and supportive) for me to show that I care about his feelings and then help him see things from the other person’s perspective before trying to problem-solve.


Role-model

The above examples also role-model perspective-taking and engaging in flexible thinking. It would be unfair to expect our children to work on mental flexibility if we’re not willing to do the same.

When you’re anticipating something happening a certain way, but the plan or circumstances change, how do you respond? Do you get upset and express your frustration out loud, or do you roll with it and seek to find an alternative?

Please don’t misunderstand me, neither one is wrong. Every person’s response is valid. It’s important to know ourselves and how we tend to react, then we can modulate our response, so we are demonstrating what we want our children to see, hear, and learn from us.

I have certainly not always been good at going with the flow. I frequently struggle with black and white thinking and adapting to unexpected change, but so does my son, who is also neurodivergent. This has motivated me to be a lot more mindful of the examples I am setting for him.

Not only can we role model helpful responses to curveballs life throws our way, we can process our thoughts out loud, to give children an in-the-moment and authentic illustration of how it’s done — which means we need to have a script or plan in place for when we hit bumps in the road.

There have been numerous times over the past 2 years where many of us have had to pivot due to the pandemic. I remember one particular example, right at the beginning of the Covid outbreaks here in Manitoba.


Wise beyond his years

My son and I are sent by our doctor for bloodwork. Our doctor’s clinic has a lab in the same building, so we head there. As we round the corner, we see a line-up down the hallway. Wow, that’s a little unusual, I think. This lab is always busy, but not typically this busy.

We round the next corner and the line continues. It is nearly back to the emergency exit at the end of the next hallway. It’s a solid two-hour wait at least. Sigh. I look online to see if any other labs are doing bloodwork by appointment, but the situation is the same everywhere.

Luckily, my son and I came prepared and each have a new book in hand. I shrug my shoulders, look at my son and say, “not much we can do about it, right kiddo?” He agrees, and says “complaining won’t make it go faster, right, mom?”

Right, buddy. He’s about seven years old, and I feel very proud of us both in that moment. In the past, I would have become very irritable and impatient, and would likely have left in a huff. Instead, we settle in for the long wait and start reading.

© Jillian Enright, Neurodiversity MB


V.E.R.T.

If you like acronyms, the best I could come up with is vert, which means green in French. Validate, empathize, role-model, and talk (process) out loud.

Validate, empathize, role-model, and talk (process) out loud.
Created by author

When you join medium, as a member you’ll have access to unlimited reads for only $5 per month. If you use my referral link, I’ll earn a small commission, and you’ll earn my undying gratitude.


Related Stories

Strategies for Managing Executive Functioning Challenges

The Many Benefits of Wondering Out Loud

The Power of Validation

More People Are Learning The Truth About ABA


Popular media has begun picking up on both the science and the sentiment

In May, an opinion article was published in Fortune Magazine discussing the controversy surrounding ABA. Written by a lawyer named Ariana Cernius, the article outlines some of the problematic history associated with ABA, and highlights legal issues with the ABA industry.

Just this week, a similar article was published from my home province of Ontario, Canada. The reporter, Jessica Durling, attempted to include both perspectives in her story. Durling brought together voices from families, proponents of ABA, as well as Autistic self-activists who speak out about its harms.

While I imagine Durling’s inclusion of ABA-apologists was the result of unbiased and thorough reporting, it seems to me those who spoke in support of ABA actually hurt their cause more than they helped it.

I’m cool with that.


He said put their autistic behaviours aside

First on my list of ABA-proponents who can speak on behalf of ABA any time was Bruce McIntosh, a founding president of Ontario Autism Coalition (OAC). McIntosh suggested we need to be able to put our autistic behaviours aside.

“There are legitimate situations where an autistic person needs to be able to put their autistic behaviours aside. For example, how about a job interview.”

— Bruce McIntosh
“Oh, I’m sorry! I forgot to leave my autism at home for our job interview. Here, let me stick it in my purse, so as to make you more comfortable interacting with me, regardless of my actual qualifications for this job.”
Created by author

They’re not “autistic behaviours”, they’re human behaviours being done by Autistic human being. There is a difference: autism is a significant part of our neurology. Being Autistic encompasses one’s entire brain and body. We can’t just “set it aside” like an accessory.

Here’s a novel idea: how about people interviewing prospective employees not be assholes? They could actually consider the person’s… [checks notes] ah! here it is… qualifications. …Y’know, the training and skills required to do the job well?

There are lots of things Autistics are generally better at than neurotypicals (generally, not always — we’re not a homogenous group). For example, we’re often much better at pattern recognition and attention to detail. Hiring people because they’re Autistic is a strength, and an asset to the organization.

Instead of expecting people to play a part for an interview, we could ask them what accommodations they need, and then actually provide them.

An Autistic person can only mask for so long. It is physically, emotionally, and psychologically draining. Rather than someone causing themselves harm masking until they can’t anymore, we could see them as worthy for who they are.

We could see Autistics as worthy for who we are, rather than saying “you have to tone it down” for an interview. You’re not desirable or wanted as you are, so please put on this neurotypical mask to make your employers and coworkers comfortable.

Created by author

“We all work for rewards”

Whenever someone is attempting to justify the use of dog training style “therapies” for human beings, they make comments like “we all work for rewards, it’s a reality of life.”

Jaime Sanata, president-elect of Ontario ABA, was no exception. He’s my number one choice for ABA-supporters who can speak on behalf of their organizations any time.

He very eloquently said, and I quote, “I think we all work in a society where we receive those types of access to things when we do stuff alright.”

So poignant, so moving.

Except there is an extremely important difference: choice.

As Ariana Cernius said, “Most autistic people cannot choose to participate in or leave ABA–it’s selected for them by family members, who reap most of ABA’s benefits.”

Freedom of choice.

Jaime Sanata goes to work, and if he does his job well, he continues to earn a paycheque. He chose to apply, interview, and accept the job. He signed a contract. Every workday, he chooses to show up and do his job.

Most people subjected to ABA and other coercive therapies have little to no choice. Most — if not all — people did not sign themselves up for ABA, their parents, caregivers, or support agency did.

Their support workers or teachers were trained to use ABA techniques, without asking for the individual‘s consent. An assumption is made that because they’re Autistic, it’s okay to use these types of approaches without asking the person how they feel about it.


Pathologized behaviours

If you’re happy and want to jump up and down, you can go right ahead. If you’re mad and want to stomp your feet, you can go right ahead.

In organizations that use coercive methods, the bodies of autistic people are considered under the control of staff and therapists.

If an Autistic person is happy and wants to jump or flap, they are told “quiet hands”, or they won’t get the “reward” they’re working toward if they continue those “autistic behaviours”.

If an Autistic person is mad and wants to grunt, pace, or tap they’re said to be “acting out”. They may get a warning to stop, and if they continue, they may be restrained “for safety reasons”.

Think about that. Last time you were pissed off, did you stomp your feet? Slam a door? Curse? Yell? How would you respond if someone told you “stop that, or you won’t get ice cream after dinner tonight!”?

If you yelled at them to leave you alone, and they put their hands on you to stop you from leaving, how would you respond?

I can tell you I might start swinging. Definitely.

Why do we do these things when we’re angry? Pace, stomp, slam, yell? They’re ways of expressing our emotions, yes. They’re also ways we attempt to self-regulate, to get our nervous system back under control.

That’s what “Autistic behaviours” are too. We stim, flap, rock, sway, move our bodies in ways that help us self-regulate. When people are told they can’t do the things which help them feel better, what recourse is there?

Option A. The person “acts out” and is considered defiant, aggressive, unsafe, and non-compliant. They are treated as such, and their behaviours are viewed through this lens, usually resulting in escalating punishments or consequences.

Option B. The person bottles up their emotions and suppresses or ignores their own body’s messages telling them what they need to do in order to calm down. Over time, this can have severe negative impacts on a person’s mental and physical health.


There is another option

“They’re not the dominant service because they’re the best, they’re dominant because they’re the most aggressive in their marketing.” 

 — Anne Borden King

There is another option. We treat Autistic people as though we are worthy and valuable for exactly who we are — because we are — rather than trying to train and mould us into approximations of neurotypicals.

Once we do this, we see a whole person, not just “autistic behaviours”. We see a human being with flaws and strengths, a person with needs, just like anyone else. When we meet people’s needs, and give them the opportunity to safely be themselves, their gifts become more apparent.

And you know what? People are doing all of this — therapies which Autistics have described as abuse and torture — and for what? So little Johnny or whomever can grow up to get a job and be a “productive member of society”?

Really? ‘Cuz that’s working out so well for people.

© Jillian Enright, Neurodiversity MB


Related Stories

The “Gold Standard” for Autistic Children

Atypical Autistic Traits

Autism Green Flags


When you join medium, as a member you’ll have access to unlimited reads for only $5 per month. If you use my referral link, I’ll earn a small commission, and you’ll earn my undying gratitude.


References

Cernius, A. (2022, May, 13). The autistic community is having a reckoning with ABA therapy. We should listen. Fortune. https://fortune.com/2022/05/13/autistic-community-reckoning-aba-therapy-rights-autism-insurance-private-equity-ariana-cernius

Durling, J. R. (2022, June, 18). ABA: Inside the controversy surrounding the most popular therapy for autistic children in Ontario. The Pointer. https://thepointer.com/article/2022-06-18/aba-inside-the-controversy-surrounding-the-most-popular-therapy-on-autistic-children-in-ontario

Kupferstein, Henny. (2018). Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis. Advances in Autism, 4. https://doi.org/10.1108/AIA-08–2017–0016

Sandoval-Norton, A. H., & Shkedy, G. (2019). How much compliance is too much compliance: Is long-term ABA therapy abuse? Cogent Psychology, 6(1). https://doi.org/10.1080/23311908.2019.1641258

Autism “Levels” Are Still Functioning Labels


Both are inaccurate and useless at best, harmful at worst

External and internalized ableism

The Autistic community has explained (and explained some more) how and why functioning labels are unhelpful, inaccurate, and often harmful.

Many just ignore us, but those who do listen seem to understand the words, but not the concept. Instead of using labels like “high functioning” and “low functioning”, we moved on to phrases like support needs and autism levels.

They’re the same damn thing.

Why are we so insistent on differentiating ourselves (or our children) from others who share our neurotype?

Let’s be honest with ourselves here: it’s ableism, plain and simple.

My son was was originally diagnosed with ADHD in 2019, and a few months later, I was given the same diagnosis. Since then, others have suggested he and I might be Autistic as well.

I’ve been researching autism and ADHD as special interests for the past five years and I’ve come to the same conclusion.

If you go back in my writing, you’ll find that many of my early articles refer to my son as twice exceptional, which is accurate: he is gifted as well as Autistic and ADHD.

Regardless of the term’s accuracy, why did I feel the need to frequently bring up his gifted intellect, even when it wasn’t immediately relevant to the story I was telling?

In hindsight, I can honestly confess there was an element of ableism involved. It was my way of saying, “he’s neurodivergent — but smart, don’t forget smart!”

As if other neurodivergent folks who haven’t had the privilege of an IQ test — the privilege an assessment done with a psychologist who really got them and provided appropriate accommodations — as if they aren’t just as brilliant, but perhaps without a piece of paper with a number on it to “prove” it?


Red herring, anyone?

There are a few different schools of thought on this. I’ve read people are concerned about placing Autistics like me, who can “pass” as neurotypical when needed (or are taken more seriously because we may write, speak, or communicate well) in the same category as Autistics who need a lot more support in their day-to-day living.

The argument suggests including us under the same autism umbrella might minimize the level and intensity of support some people need because other Autistics don’t require the same types of accommodations or help.

On the other hand, considering people like me “level 1”, “high functioning”, “low support needs”, or whatever euphemism-du-jour is floating around, undermines and minimizes the supports I might need at times.

It also puts the spotlight on the wrong problem (as usual): the Autistics. We’re the problem because people can’t put us into neat little boxes or diagnostic categories.

We’re the problem, not the fact that Autistics (along with many other disabled and marginalized groups) can’t access the supports they need and aren’t given the same opportunities as the majority population.

Yes, let us argue amongst ourselves about who gets what label, while the institutions which continue to oppress us continue doing so unfettered and unaccountable.

I’m sure they don’t mind.


Take me, for example

I have a license and drive a car. I am a parent. I run my own business. I am University educated.

People call this “high functioning”, but I call it privileged. I have white privilege and all that comes with it. I had the privilege of attending University. I had the privilege of accessing adequate supports and accommodations which allowed me to graduate with honours.

I have the good fortune to be married to a supportive spouse. I have the privilege of being able to communicate well through written and spoken words.

Many brilliant Autistics are minimally or non-speaking and have been ignored, dismissed, and misunderstood for much of their lives, simply because they didn’t have an effective way to communicate with those around them. Many have since gone on to write incredible memoirs, poetry, and articles, or have created beautiful works of art.

This potential always existed, yet non-speaking Autistics were considered low-functioning and thus it was assumed they did not have these capabilities. We pigeonholed them into their corresponding category, refusing to consider they might have more to share with the world, if only people made the effort to find alternative modes of communication.

There have been times in my life where I was also “low-functioning”. About 12–13 years ago, I went through what I now understand to be severe Autistic burnout.

I had seizures and complex medical issues due to undiagnosed Celiac disease, so I couldn’t drive and had to take a leave from my University program. My son wasn’t born yet, so I was not yet a parent. I had to go on disability because I was too sick to work. I became severely depressed and lethargic.

If it hadn’t been for my husband, I don’t know what might have happened. I could hardly care for myself, and some might say I truly couldn’t at that time in my life.

Based on our society’s view of success and functioning, I did not check any of the requisite boxes.

I fully understand that a severe illness which is eventually diagnosed and treated is not the same as a life-long disabling condition. My point is, I was “high support needs” at that time, and there have been plenty of times over the past decade where my functioning levels have fluctuated significantly.

Our outward appearances of success and functioning change constantly, depending on our circumstances, the level of support and understanding we receive, and the variations in our mental and physical health.

Created by author

In the mean time

While we wait for the professional and popular communities to catch up with our reality, we’ll have to sort this out for ourselves (as usual).

Rather than focusing on levels and labels, why not get specific? Instead of saying I have low support needs, why can’t I just express those support needs whenever the situation calls for it? That would be a lot more helpful than a blanket overgeneralization anyway.

My particular sensitivities are being in busy or crowded environments, I’m socially anxious and awkward, I experience sensory overload easily, and I require clear and direct communication.

I am very forgetful, and I hate being interrupted when I’m focused on a task because I struggle with set-switching. (I could go on, because listing my pet-peeves would be therapeutic, but that’s not why I’m here and we haven’t got all day).

Understanding these things about me, and me knowing the strengths and struggles of someone else, might help us support and accommodate each other. It might make us better co-workers, collaborators, partners, or friends.

This way, we don’t have to force people into little boxes based on diagnostic criteria established by people who often don’t even have lived experience.

Instead, we can try to treat each other like human beings, all of whom need support and accommodation of some kind.

© Jillian Enright, Neurodiversity MB


When you join medium, as a member you’ll have access to unlimited reads for only $5 per month. If you use my referral link, I’ll earn a small commission, and you’ll earn my undying gratitude.


Related Stories

This Is Why We Need More Autistic Researchers

The Sting Of Internalized Stigma

Fighting Internalized Stigma & Ableism

Something happened!

Recently, I posted excitedly on social media about how I was nearing ten thousand followers on Medium

I’ve been working really hard on my writing, I’ve published 310 articles since April 2021.

Earlier this morning, my followers had increased a bit further, and I was at 9.2K.

Only an hour later, I was suddenly down to 8.9K!

I lost over 300 followers in under one hour. I’ve never lost more than one or two in a day, let alone an hour.

For those who aren’t trying to make a living through writing, this may seem like a silly thing to set upset about…

But since the pandemic significantly impacted my other business and source of income, writing has been my livelihood. That means followers disappearing is money disappearing.

If any fellow Medium writers can shed some light on what might have happened, and whether there’s a way to fix this, I would be extremely grateful.

If you enjoy my writing and wish to support me, you can follow me on Medium at twoemb.medium.com.  Thank you!

When you join medium, as a member you’ll have access to unlimited reads for only $5 per month. If you use my referral link, I’ll earn a small commission, and you’ll earn my undying gratitude.



Some of my recent writing:



My full table of contents: