Growing awareness of movement difficulties in autism

Thanks to lobbying by nonspeaking autistic people and their allies, professionals who work with autistic people in South Africa are becoming increasingly aware of apraxia as a major factor in the struggles of autistic people with high support needs. Nicolaas Paulsen, Akha Khumalo and other young local activists have written about this phenomenon, which has also been described by many other autistic writers and activists in other countries.

Movement difficulties in autism are also the subject of international research, for example, at the New Jersey Autism Centre of Excellence, under the leadership of Dr. Elizabeth Torres.

What is apraxia like?

Apraxia is a problem with purposeful movement. In nonspeaking autistic people, this typically affects the whole body. Many nonspeakers call it the body-mind disconnect or the brain-body disconnect.

What does apraxia look like? An apraxic autist may jump up and run out of the room even when they meant to stay. They may struggle to point to or select the right object even if they know which one they meant. They may even say random words, but not the ones they intended. Some may be able to utter several intentional sentences, interrupted by unintentional words or sentences—and you wouldn’t necessarily know that those words are unintentional. They may look and sound like they’re clowning around.

Nonspeaking autist William Tziavaras describes his experience with apraxia

These difficulties mean that even for those apraxic autists who do speak, speech is an unreliable way of communicating. They need a different way. If conventional alternatives like typing on a tablet or writing on paper aren’t feasible, they need therapy that helps to help them with motor planning.

What helps?

Methods involving prompting

There are a variety of methods which nonspeaking autistic people say helps them learn better control of their movements. Some of these methods, such as Spelling to Communicate, involve prompting, i.e. guiding an apraxic person through simple instructions to help them learn control of their bodies.

Spelling to Communicate was brought to South Africa in 2017 through a collaboration between Nicola Sowah (a Speech & Language Therapist with a Masters Degree in AAC), Tania Melnyczuk (an autistic activist), and Luli Carrillo, the mother of a nonspeaker Leonardo Santana.

What does this prompting entail? A person receiving therapy may, for example, hear their therapist give prompts, such as “Up, up, up”, “Steady”, “Keep your rhythm” or “Start again”. They may be talked through the comparatively complicated series of steps involved in going to close the window. As their proficiency grows, prompts are faded, until the apraxic person can do the movements on their own. Some apraxic autists may still need someone to initiate the process, as many struggle with inertia.

A number of well-known autistic activists, including Tito Mukhophadyay, Ido Kedar, Rhema Russell and Damon Kirsebom, can now communicate without prompts, having needed prompting in the earlier years of therapy.

Optimisation strategies

Besides prompting, there are various things which individual autistic people say helps them regulate their bodies and minds. Some of these involve specific foods and supplements, or mindfulness techniques to calm anxiety. None of these cure apraxia, but they can help manage it.

Presuming competence

Nonspeaking autists say that the more their parent, therapist or aide respects them and believes in their ability to think, the more they can focus and control their movements. But when someone is dubious about their intelligence, intent or potential, judges them for their behaviour, trivialises their motor problems or generally just treats them like a baby, the performance anxiety makes it impossible for them to control their body.

The challenge for outsiders is to believe in what they do not see on the outside, and to treat a nonspeaking autistic person as an equal: someone with valid opinions, beliefs and goals—albeit someone with a significant disability. That’s what presuming competence means.

One of the clear signs of not presuming competence is when someone “puts on a voice” or “makes that special face” when speaking to a nonspeaking person.

Apraxia versus oral motor apraxia

For many years, authorities have considered oral motor apraxia to be a common impediment to speech in autistic people.

Oralmotor apraxia is the inability to volitionally sequence oral movements of the speech structure for nonspeech tasks in the absence of neuromuscular deficits such as paralysis or muscle weakness.

Zemlin, 1998

In simple terms, a person with oral motor apraxia is unable to make the movements needed to speak, but it’s not because there’s something wrong with their muscles or nerves. Because this is just an oral (mouth) motor (movement) problem, a person with this condition can still “volitionally sequence” other movements in the rest of their body.

A problematic assumption

When we assume that most nonspeaking autistic people merely have oral motor apraxia, we assume that the rest of their body’s movements are intentional. So, if we ask them to point to the cat, but they point to the dog, then it must be because they didn’t understand what a cat is, or they were being deliberately obstinate. Many autism therapies are based on the incorrect assumption that nonspeaking autistic people are either intellectually disabled, or wilfully noncompliant, or both. PECS, an ABA-based method, works to foster communication based on such assumptions. In fact, most communication therapies provided to most nonspeaking autistic people do not recognise the most common communication challenges.

Autism is a neurolodevelopmental phenomenon, not a behavioural disorder. Autism researcher Dr. Clarissa Kripke states what should be obvious (but often isn’t!): the therapy should match the neurology.

Why PROMPT© is not a good fit

Some Speech & Language Therapists (SLTs) are trained in a method called PROMPT©. PROMPT stands for Prompts for Restructuring Oral Muscular Phonetic Targets. PROMPT is a tactile-kinesthetic (touching and moving) approach to speech therapy. The therapist uses touches the client’s face in various places to show them what parts they need to move, and also to shape those parts for them.

PROMPT is popular with some ABA providers, as it supports ABA’s oralist goals.

Oralism is the education of Deaf people through speech rather than through sign language. In disability rights circles, oralism has acquired a broader meaning, namely the specific subcategory of ableism where nondisabled people promote speech over other means of communication that could have made it easier for a disabled person to communicate more fully and effectively.

Ableism is the culture and institutionalised system of discrimination against disabled people, based on unhelpful beliefs about disability.

Learn more

ABA (Applied Behavioural Analysis) is a behaviour modification method. When used against homosexual people, it is known as ‘converstion therapy’. Based on outdated beliefs about autism and used without consent, it remains one of the most widely accepted methods employed against autistic children and adults, especially those with high support needs.

Learn more

Recently an advertisement from a prominent South African ABA company appeared on Facebook. “Apraxia is common in children on the autism spectrum,” said the ad. “Find out more about how PROMPT can help children on the autism spectrum. Children can create new neuro-maps for speech.” The advertisement then went on to promote a book by the company’s founder.

This advertisement is misleading for several reasons. Firstly, it appears to be based on the traditional misconception that autistic people who struggle with speech just have an oral motor problem. This is not what most nonspeaking people are telling us. They describe a problem which goes beyond speech movements alone: a whole-body apraxia.

Secondly, the advertisement ignores the self-reports of ABA survivors who were subjected to PROMPT. Some nonspeaking autistic children benefit from speech therapy, and speech may even become their primary mode of communication. (Autistic artist Paris Subraya, who has always had excellent fine motor skills, is one of them.) But most nonspeaking autists have great difficulty with both gross and fine motor skills, and do not benefit from speech therapy, including PROMPT. Nonspeaking apraxic autists within the Autistic Strategies Network have described their experience with therapists using PROMPT at ABA schools as horrible and disheartening.

Principles and precepts

Apraxia—the brain-body disconnect—is common among nonspeaking autists. Unless we know how to accurately read each other’s minds, communication always involves movement. Therapy should therefore assist with motor planning.

Forcing speech is ableist, and therefore unjust. There are other ways of communicating that work better for some people and under some circumstances. (By reading this typed article, you are recognising that fact!)

Autistic people are different from one another. To get an idea of what works for most, and for the niche groups, we need to listen to many autistic people. If the topic under consideration is communication for nonspeaking autistic people, it stands to reason that we should learn from the many nonspeaking autistic people who are able to communicate effectively about what worked for them and what did not.

For the anxious parent of a nonspeaking autistic child, the choice of therapies is bewildering. Adhering to a few principles can make the difference between years of sadness and a fulfilled life:

  • Value communication over speech.
  • Presume competence.
  • Listen to many nonspeakers when they say what works for them.

The Autistic Strategies Network is a collaborative initiative of both speaking and nonspeaking autistic people. We invite you to listen to nonspeakers and to support Africa’s nonspeaking autistic revolution.