neurodiversity – NeuroInsurgent

Autism and ADHD: Neurological Cousins

This article was originally published at The Aspergian.

October is ADHD Awareness Month!

In the six months or so leading up to the assessment in which I was diagnosed as autistic, I had first “self-diagnosed” with ADHD. A friend suggested it to me, and the more I read, the more I related, and the more everything in my life that hadn’t made sense for 28 years fell into place.

It took probably a year and a half post-assessment before I really started looking into the autism side of my diagnosis. In my written report, my (very excellent) psychologist had suggested that doing so may help me to understand myself better. She was spot on!

Having immersed myself in ADHD literature before switching over to reading about autistic people, I like to believe that I have a pretty good grasp of what characterizes each condition, but like with many neurological disorders, there is a lot of overlap.

“Attention deficit” is not entirely accurate…

Like autism, ADHD is characterized mainly by what diagnosticians have observed, rather than what the person actually experiences. Challenges with focusing, hyperactivity, and impulsivity are the most noticeable traits, but for many ADHDers, these aren’t actually their primary challenges, and many say that ADHD is a misnomer.

ADHDers have what has been called an “interest-based nervous system.” We might have difficulty concentrating on something difficult or uninteresting, but we can also hyperfocus on the things that we’re really into. The real experience of ADHD is not a deficit of attention, but an inability to regulate it.

Hyperactive on the outside; restless on the inside.

Hyperactivity in ADHD often changes as we grow into adults, and we are instead more likely to have restless thoughts. Along with that comes impulsivity, the other “defining” trait of ADHD.

Between the restless thoughts and difficulty concentrating, it’s easy to just do without thinking. ADHDers say things we would prefer to take back immediately; we’re prone to buying things without thinking it through first; and we are very much at risk of forming addictions.

Executive functioning is at the core

However, like autism, the criteria in the DSM for ADHD consist mainly of what psychologists have observed, rather than what the person actually experiences. Challenges with focusing, hyperactivity, and impulsivity may be the most noticeable traits, but the core traits underlying these have to do with our executive functioning system of the brain.

ADHD expert Dr Thomas E Brown divides the executive functions that are impaired in ADHD into the following “clusters:”

Activation: Organizing, prioritizing, and activating to work.
Focus: Focusing, sustaining, and shifting attention to tasks.
Effort: Regulating alertness, sustaining effort, and processing speed.
Emotion: Managing frustration and modulating emotions.
Memory: Utilizing working memory and accessing recall.
Action: Monitoring and self-regulating action.

Challenges with these areas will probably be familiar to autistic readers, even those who aren’t also diagnosed with ADHD. As neurodivergent cousins, we experience quite a bit of overlap in traits.

For example…

We both hyperfocus on what interests us. ADHDers may experience more difficulty concentrating on what doesn’t interest them. Autistics may dive a little deeper into our special interests, and these interests may last a much longer time.

We both have sensory sensitivities. ADHDers are easily distracted by extraneous stimuli that others are able to filter out. Autistic people may or may not be as easily distracted as ADHDers, but depending on whether they are hyposensitive or hypersensitive to a particular sense, they are able to hear or see things that others miss.

We both have challenges with emotional regulation and low frustration tolerance. The underlying reasons may be different. ADHDers dealing with restlessness may have less patience for something aggravating. Autistic people may lash out when experiencing sensory overload.

And we both stim! ADHDers jiggle their legs, twiddle their thumbs, doodle while taking notes, twirl their hair, and are constantly on the move to relieve the tension of hyperactivity. Autistic people stim for a wider variety of reasons, and autistic stimming seems to be a little bit less like “typical” fidgeting (e.g., hand flapping).

There is much more overlap, but when you’re diagnosed with both, it can be hard to separate the two. In fact, I once read that ADHD could be considered part of the autism spectrum given how often they co-exist. Perhaps one day we’ll see ADHD as an autistic “profile.”

Until then, it’s all neurodivergence to me!

The “Severe Autism” Concept is Behaviourism’s Final Stand

This article was originally published at The Aspergian.

In terms of psychology, taking a purely “behaviourist” perspective towards human beings has actually fallen way out of fashion.

For example, according to this article on MentalHelp.net, a behaviourist’s perspective towards depression is that depression is learned; the person’s environment is not providing enough pleasurable experiences (positive reinforcement). The final paragraph states:

Traditionally, behaviorists did not pay much attention to people’s thoughts, perceptions, evaluations or expectations and instead focused solely on their external and directly observable and measurable behavior. They did this not because they weren’t aware of these internal feelings and thoughts, but because they thought them relatively irrelevant to the process of influencing behavior, and too difficult to measure with any accuracy. It turns out that this position was too extreme. More recently, research has shown that internal events such as perceptions, expectations, values, attitudes, personal evaluations of self and others, fears, desires, etc. do affect behavior, and are important to take into account when doing therapy.

It also follows with, “As a result, old-fashioned ‘strict’ behavioral approaches to treating depression are not as popular today as they used to be.”

The reason why behaviourism has been able to stick around so long in the form of behavioural analysis of autistic people is because autism has always been conveyed as a sort of “mystery” disorder.

People are still arguing about what causes autism, how to treat it, and even how to define it. Meanwhile, those of us who are actually living with it are regularly downplayed or outright silenced.

Since the early ’90s, however, we have been on the precipice of a complete paradigm shift when it comes to our understanding of autism and autistic people.

In 1993, Jim Sinclair, who didn’t speak until the age of 12, proclaimed, “Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real.”

Around this same time, researchers were questioning their own perception of autism due to the “controversy” surrounding facilitated communication. Did decades of research into autism get it wrong?

Behaviourists took it upon themselves to conduct rigorous authorship testing of those communicating via supported typing or spelling seemingly without acknowledging that the theory behind the method behind why it was necessary differed from their own conception of what autism is.

Pure behaviourists only use quantitative measures of behaviour as acceptable data. So they concluded, from the few messages that confirmed facilitator influence, and from the scarcity of correct answers in controlled settings, that all of the messages must be influenced.

In order to come to this conclusion, it also requires the researchers to downplay or criticize the methodology of every study performed or any video showing counter-evidence.

This includes, for example, an eye-tracking study showing that the person communicating looked at the letters before their hand moved to it, and a study showing that, of about 720 interactions, about 10% of them involved disclosure of information unknown to the facilitator.

They also must ignore massive amounts of firsthand experience from family and friends of those using the method. Authorship of words can easily be validated by message-passing in real life: spellers and typers have disclosed feeling pain that was later confirmed by medical examination, for example.

And, at this point in time, they also must ignore the growing research base that supports the theory upon which facilitated communication and newer spelling methods like RPM are based on: there is a high rate of apraxia among non-speaking autistics, and including a measurement of motor differences increases accuracy of diagnosing autism.

Put another way… if we look beyond a behaviourist perspective of autism, we are seeing that some non-speakers appear to have a developmental motor disorder rather than an intellectual disability or a lack of understanding. Their verbal communication is just “locked in.”

If you actually pay attention to what non-speakers have written, there is a persistent reference to a “mind-body disconnect,” or an inability to plan motor functioning. This may describe childhood apraxia of speech (where the brain has difficulty coordinating the muscle movements for speech) or perhaps something like ideational apraxia (the inability to select and carry out an appropriate “motor program.”)

If the notion of “severe” autism is really a result of apraxia, we have some very solid evidence that behavioural therapies are completely and utterly useless for autistic children. If someone is unable to reliably control their motor functioning, we must rely on what they communicate to us in a different way.

Observing the behaviour alone is not related to their conscious thoughts because the conscious mind isn’t fully in control of the body.

But “severe autism” is where behaviourism has its last stand: “Sure, maybe you ‘high-functioning’ autistics don’t need behavioural therapy, but what about people with ‘severe‘ autism? You can’t speak for them.”

No, they can speak for themselves, actually.

But there’s a concerted effort to keep that fact on the down-low.

The biggest threat to the behavioural therapy industry is autistic people ourselves, because we tend to understand autistic behaviour better than the vast majority of neurotypical professionals, and if our knowledge were widespread, we could easily put them out of business.

Together, autistic people make up a spectrum of life experiences, some challenging and some enjoyable, and our collective experiences should inform the direction of “treatment” for people who are like us. We know what ultimately works and what doesn’t, and we deserve to be given a fair chance.

The people who push the “severe” autism narrative are correct in one thing; I will give them that. There are those of us in the community who require more support than others, and their voices aren’t being heard.

The only way to topple this tragedy narrative is for us is to unite with autistics who don’t speak or can’t speak reliably, who also have epilepsy or cerebral palsy, and who have learning or intellectual disabilities.

Where that narrative goes wrong, though, is in the idea that these people have no voice at all. In fact, non-speakers who have learned successful methods of communication have long held well-deserved places in disability activism.

I believe that those of us with platforms are obliged to share the words of non-speakers and seek their input whenever possible. We can’t do what the “anti-neurodiversity” crowd does; we can’t argue over whose voice is more acceptable.

There are no more excuses for relying on a purely behaviourist perspective of autistic people. We can tell you ourselves.

Autistic Solidarity: A Personal Reflection

This article was originally published at The Aspergian.

I started to write this article after I wrote my poem, Unmasking as Autistic Pride, but I put it on hold when a special interest took over. I want to come back to it now.

When I wrote Unmasking, I wanted to make sure that it included all autistic people. There are a few lines about talking, but ultimately, to me, unmasking is about letting my body do what it wants.

Many autistic people, though, have a body that will sometimes compulsively act on its own accord. Many autistic brains tend to be not-so-great at executive functions that plan movement.

I only experience this to a tiny degree comparatively: I don’t lift my feet high enough when I walk and can trip over seemingly nothing.

I’ll be looking where I’m going, but not realize that part of my body is still going to hit something. I don’t have a firm grasp, and things fall out of my hands if I’m concentrating on something else. However, I can stop myself from stimming if I want to.

I can also use my vocal cords, lips, tongue, and teeth to speak. Many autistic people can’t do these things with reliability. I don’t support the use of functioning labels, but it does no one any good to deny having what Mayer Shevin called “fluency privilege.” Instead, I try to recognize where I have advantages that others do not; and when people talk about how they have been discriminated against in a way that I don’t experience, I try to listen.

I digress.

To me, unmasking is becoming “visibly autistic.” I wear ear defenders and sunglasses outside now. I don’t stop myself from stimming if I need to. I try not to worry too much over whether or not I said the right things, used the right tone, or made the right face.

To me, pride is acceptance. People will like me, or they won’t. People will understand me, or they won’t. And that’s okay.

It’s okay, because there are people out there who do like me. There are people out there who do understand me. And many of them are autistic or neurodivergent themselves.

When I’m trying to let go, I think of those people. My people. I think about the others in the world who haven’t been able to accept and embrace themselves as easily, who have a much more difficult time with interactions than I do, who aren’t as fluently-speaking as me, whose bodies move in different ways.

I unmask not just for me, but for others, so that others see someone who is like them, and then maybe they might feel a little bit better about who they are.

When I wrote the line, “I don’t owe the world,” what I meant was that I don’t have to pretend to be normal just for the sake of fitting in. I don’t owe the world a sanitized version of myself that can be deemed acceptable.

If you exist in public while the world is trying to erase you from existence, you are revolutionary. You’re changing the world just by being here, and I am so proud of you.

You should be proud of you, too.