Thread by @ekverstania

Question posted this morning on Facebook:

"My daughter is non-verbal and 5. Where do I start introducing an AAC system to her? She has a tablet so we can easily download apps. Please could anyone tell me which app would be suitable for her."

It's the wrong question, but...

It tells us about how inadequate support incl. training must be for parents of children with communication disabilities.

The mother didn't say whether or not the child has an autism diagnosis, because it was an AAC group, not an autism group (although many of the members and admins are autistic).

This is important, because the type of AAC chosen or tried must match the problem.

Also, I suspect that the mother has the idea that AAC means "apps on electronic gadgets". (It's a common misconception perpetuated by some suppliers of such apps and devices.)

So when a child doesn't speak and people say the child needs AAC, parents think apps.

Let me assume for a moment that we asked the mother whether the child has a diagnosis of autism, and she said yes.

We can NOW start to start to narrow down the problem to be able to work towards a solution, although identifying the problem isn't always easy.

This video discusses some of the many reasons why some autistic children don't speak, and discusses some of the fundamental principles behind communication support for one of the most common problems.

https://twitter.com/ekverstania/status/1126078581749297152?s=19

Now, it won't always be clear even to a degreed professional Speech & Language Therapist WHICH of those problems is the problem for THIS child (or whether it's even more than one of these).

So... there are some ways of working towards an answer even if we're not sure. And it doesn't mean we delay all communication therapy until we're sure.

But it does mean that we should proceed with all those possibilities in mind, and that changes how we do therapy.

More later. Lunch now. Meanwhile, here's an irrelevant picture of leaves which I photographed recently on a walk.

So, reasons why many autists don't talk include:

🟨 apraxia
🟨 oral motor apraxia
🟨 anxiety-related issues (e.g. selective mutism)
🟨 auditory processing issues (e.g. spoken words sound garbled)
🟨 a combination of these.

Some fluctuate.

I focus on apraxia for a reason.

First, a few tweets from other threads that link to autists' own descriptions of autistic #apraxia from the inside. Some of them refer to this as the brain-body disconnect or the body-mind disconnect.

Body-mind disconnect (autistic #apraxia):

https://twitter.com/ekverstania/status/1330231916985987073?s=19

Body-mind disconnect (autistic #apraxia):

https://twitter.com/ekverstania/status/1270770065475067907?s=19

Body-mind disconnect (autistic #apraxia):

https://twitter.com/ekverstania/status/1096741627907969024?s=19

Body-mind disconnect (autistic #apraxia):

https://twitter.com/ekverstania/status/1134481225467535360?s=19

Body-mind disconnect (autistic #apraxia) with an additional twist: unlike many other apraxic autists, Dan Bergmann couldn't understand what he was hearing, for years.

This is a long presentation, also featuring Elizabeth Bonker.

https://twitter.com/ekverstania/status/1208121664011210752?s=19

I could go on and on posting first-person stories about the body-mind disconnect (autistic #apraxia). I have a trove of them.

But there's another reason that leads me to believe that (even though there are other reasons why some autists don't speak), this is a COMMON problem.

I am in regular contact with a number of Occupational Therapists (OTs) and Speech & Language Therapists, or SLTs (called Speech & Language Therapists, or SLPs in the USA).

For those who don't know, entering these professions requires more than just a degree.

Some of the ones I chat to regularly have additional qualifications beyond those required to open a practice. They have formal credentials in specific methods recognised by governing bodies like ASHA; one has a masters degree in AAC, one was even a university professor in AAC.

They were well respected, had many clients and some even employed other credentialed professionals.

Then came the epiphany.

How exactly it happened was different for each of them.

For most, it was a series of epiphanies.

But now I need to go and do some work for clients, so I will tell you the rest later.

Meanwhile, here's a random photo of a neighbour's bougainvillea which I took early one morning.

OK, I'm back, but it's nearly 3 in the morning, so bear with me as I add tweets to this thread at a rather slow pace, with long stretches in between.

First, some more background.

Traditionally, the average SLP/SLT working with autistic clients doesn't read anything written by autistic people, let alone nonspeaking autists. These professionals learn their trade from non-autistic academics.

Sometimes I meet an SLP/SLT or teacher specialising in autistic children who's been in the business for years, and I'm the first autistic adult with whom they've had a conversation.

And they tell me they've "learned sooo much" from the children they've worked with; so I ask what they learned and they say, "Well, I've learned to be patient, and..."

Then I know that they've learned approximately nothing that would make a radical difference.

Patience is just a substrate. Everyone in therapy and education is supposed to be patient, surely.

You don't learn very well when you're the person in the privileged position of authority.

Learning takes some humility.

When the main thing you learned was 'patience', then it sounds to me like, "I started out with an agenda, but then realised just how delayed these children are, so I lowered my expectations as I work them through these milestones and magnanimously put up with their behaviour."

That probably sounds rather presumptuous and judgemental towards a whole lot of professionals, but I have seen the practical outcome of this in autism schools.

It's a mindset that leads to a person of over 20 being called "pre-verbal".

Dudes! Some people are disabled. 😆 Say the word. It's NONSPEAKING. Not 'pre-verbal', like there's this road that all humans are on and some people are pre-a-certain-milestone and they're gonna reach it, like, two or three or eight decades behind their age-peers.

Autism is not a developmental delay. Some of my autistic friends play with toys designed for children. They are adults. Playing. With toys. Adults. NOT 'adults with a mental age of 10'.

Adults.

Autism isn't a delay.

https://twitter.com/ekverstania/status/1033912092666019840?s=19

But but but but but Tania! Some people do learn to speak late. Like at the age of 6, which definitely counts as a delay!

OK. We can get back to this. But let's first return to where we were: autism professionals who don't learn from autistic teachers.

So, with that as a background, we can now start to imagine the circumstances that might lead some professionals to seek out the guidance of autistic people after all.

People like these, who should have more answers than others, looking for answers...

https://twitter.com/ekverstania/status/1343209965390090240?s=19

So I'll tell you a story, but I'll try to cut it short, to get to the point, the point being what (besides all these self-reports) led me to believe that apraxia is sooo common among nonspeaking autistic people...

Common enough, according to observation, to warrant a full-on worldwide prevalence study that would inform best practices for early support to nonspeaking autistic children.

Now, what are the usual approaches when an autistic child is, like, three, four, five, ten or seventeen years old, and isn't able to use speech to communicate effectively (or at all)?

Speech therapy.

Exchanging picture cards or pointing to them.

Some kind of app on a device.

A basic sign language, such as Makaton.

But sometimes none of this works. And the assumption made by most of the autism expert teachers and the autism expert neurologists and the expert-on-my-own-child autism parents is that it's an intellectual problem. In ableist layman's language, "this person is simply too stupid".

So, there was this one guy, D, and nothing worked. His Speech & Language Therapist had some success with his twin brother, A. A could kinda talk sort-of-ish. Like basic. They were 14. But D couldn't even point to YES and NO. He was in Grade 1 at a school for autistic children.

I chatted to her from time to time on WhatsApp. We'd heard about this method that nonspeaking people themselves were writing about, saying it helped them.

But it didn't have official approval from the People In Power Who Usually Don't Listen to What Non-Speaking Autistic People Say Anyway, the people at the top of the official governing bodies for SLTs/SLPs, and the university experts.

But hey, nothing else worked, right?

So, this SLT decided to learn the method, and ask D's parents whether they were prepared to have her try it, even though it was still not an officially approved method.

And they said OK.

Fast forward past the many adventures of an autistic activist, a Speech & Language Therapist and the mother of ANOTHER nonspeaking autistic teenager, to the day when D spelled out on a letterboard in front of a group of parents, his own teachers, other educators and therapists:

"Autism is my talent. Stop treating me like I have no skills."

Toe huil die mense darem snot en trane.

(Afrikaans expression describing the audience's response.)

Fast forward some more.

The therapist was still working with her other autistic clients in the usual ways.

One of them, Z, was being taught to point to picture cards. I think he was about 11 at the time. And D's twin A could speak sort of, so he continued with speech therapy.

The therapist in the meanwhile got her masters degree in Augmentative and Alternative Communication.

People Connected to Decision Makers on Autistic Humans were raising eyebrows, though, because she had imported this Unofficial Non-Approved Method which they hadn't seen but which they knew must surely be evil.

But as long as she and the others who were now occasionally using the method for specific clients told parents that the method is "experimental" and got their consent to use it, they remained within the code of ethics of their professional body.

And then she did a weird thing. It was shortly after this picnic for nonspeaking autistic children and their families.

She asked A what the picnic was like for him and he said that it was "fine" and "nice".

Then she asked him again, but this time she held up a letterboard and asked him to spell out an answer by pointing to the letters with a pencil.

And his answer was much longer, much more nuanced, and slightly awkward and embarassing!

She was kinda gobsmacked.

She did another experiment, this time with Z, the boy who was progressing slowly but surely with the picture cards after about seven years of therapy, spelling out a story about an elephant and a giraffe and so on (kiddy stuff like they usually do with autistic children).

She tried out the new Evil-'Cos-We-Say-So Never-to-be-Used Non-Approved-'Cos-We-Haven't-Seen-It-And-We-Don't-Wanna Method on him too.

In the meanwhile, other experienced, respected, properly trained registered professional therapists were starting to do similar things, raising eyebrows and prompting lots of Powerful People Who Never Listen to Autistic People Anyway to write official Statements of Disapproval.

This was risky. I mean, why do Things Which Powerful People Don't Like when you have a business and a good reputation and a stable income and good referrals from the autism schools and the ABA outfits and the doctors? Why rock the friggin' boat, duh?

And why take children who are already saying "fine" and "nice" or using picture cards nicely after seven years of therapy, and give them a chance to communicate using 26 letters to say whatever they want (which may be what you don't wanna hear)?

But that's not all.

It gets worse.

The year is 2018. We've organised ANOTHER Renegade Non-Approved Revolutionary Eyebrow-Raising Training Week, not only in the original city, but also in my home city of Cape Town. This time some ABA people sign up too. The plot thickens!

Michael comes from Knysna to Cape Town with his mother.

Michael is a young autistic adult, a former client of the SLT who's been working with D, A and Z.

In past years, she'd taken him as far as he could go with speech therapy, so he could sorta speak with bland prosody and simple words, often repeating the same thing over and over.

I have sooo many more stories to tell about that day they let me watch the training in Cape Town for a few hours, but my brevity is failing me here, so lemme try to focus.

They started Michael on the letterboards that day, even though he can speak.

In various cities and towns in other countries, similar things were happening:

Well-qualified therapists with a lot to lose were discovering that MANY of their autistic clients who were already doing okaaaayish with basic sign languages, picture cards and speech therapy, benefitted IMMENSELY from methods designed for severely disabled apraxic people.

And they began to realise that 'severe' autism or even 'moderately severe' autism is, for MOST people who wear these labels, not so much a behavioural disorder or a social skills issue, but a largely a MOVEMENT PROBLEM.

But powerful people who keep their perch on the prominent twig by telling the world what severe autism is all about are not liking this phenomenon of nonspeaking people using Methods They Didn't Approve to learn to communicate independently.

So if you're autistic and you're in the early stages where you still need to someone prompt you, and to hold the letterboard up or help you focus when your body goes bonkers, these Benevolent Saviours Who Don't Listen to Autistic People will say you're being cruelly exploited.

They will urge your family to take you away from the revolution of independent communication and back to therapies like PECS where you get a limited vocabulary of pictures which you can use to say what they tell you to say, and they'll reward your compliance.

If you have never heard that there's this war going on around nonspeaking autistic people, and you're now aghast, don't pull out your hair, just channel your energy to something useful. Understand why it happens, share what nonspeaking autistic are saying.

https://twitter.com/ekverstania/status/1330231916985987073

If that's not enough for your level of rage, then by all means, do more. Here's a thread which I started to help you learn more. It's a rabbithole connected to more rabbitholes. Have fun down there.

https://twitter.com/ekverstania/status/1333798307034923014

So, let's go back here now, to the beginning, and examine this parent's question.

https://twitter.com/ekverstania/status/1343097991046066176

And if you're tempted to say, "Thanks, Tania, I now know that the answer is apraxia! This child needs training in purposeful motor skills on a letterboard, she doesn't need an app!" then nah. Wrong conclusion.

It's not the same for everyone.

https://twitter.com/ekverstania/status/1331078766265856001

But...

From what we're seeing, the problem of apraxia in nonspeaking autistic people is soooo common that it should be considered as a possible factor.

The characters in my story are real. Michael, Z, D and A are real people. Some of them are no longer pointing to letterboards, they're on to typing now. Over the next few days I'll link to some of the things they've written, and you'll see their real names.

Alternatively, if you don't want to wait, do a treasure hunt by working your way up this thread. See whether you can guess which ones they could be. I think Michael is the only one I haven't added yet, so I will do that in due course.

https://twitter.com/ekverstania/status/1340163221118996480

Also, I should perhaps also leave you with some good news. More and more People in Powerful Positions Who Never Listened to Autistic People Before have started to listen. I'm optimistic about this continuing in 2021 and I'm talking to people who can make a difference. Officially.

If I die before then, please continue to spread the words of nonspeaking autistic people around the world, and support the training of anti-ableist communication professionals in Africa.

And here's another irrelevant pic before I continue: a painting about 1 metre wide which made I and lent to a former housemate approx. 11 years ago and never got back. 🤨

If people are prepared to merely rest in the comfort of their "patience", you get a situation like with N.: five years of speech therapy and what could she say?

"Mamma."

But out of context.

People shouldn't be paying oralists for patience.

https://twitter.com/ekverstania/status/1343360770160156672?s=19