Louise: J’s proud parent

STAGE 1 (When J was 2 years old)

I had heard of echolalia, but J’s language never matched what I had been told about that. Echolalia is commonly (and wrongly) described as being meaningless parroting without understanding, and it was certainly never like that with J. When J first learned to speak, he was memorising hundreds of phrases and matching them perfectly to different contexts. It was like visiting a country where you don’t speak the language and getting by on what you can remember from a phrasebook. It still astounds me, the feat of memory and associative thinking it must have taken for J to do this so accurately while still only a toddler.

Two-year-old J would run over to me saying “sit on my lap?” before clambering on to me, cupping my face in his hands and pressing his forehead firmly against mine as if he were trying to channel the whole world through me. “Sit on my lap” was the first thing that made me think he might be autistic. Pronoun reversal is known to be common in young autistic children. I remember reading about this reflecting a difficulty with “perspective taking” or “theory of mind”, a lack of understanding of the relation between self and others. This idea is based on myths about autistic people that have only recently started to be questioned (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6959478/). It now seems that autistic people have been misunderstood by almost everyone and in almost every way for decades.

The real explanation for J’s pronoun reversal is nothing to do with his relational understanding and everything to do with the way he was processing language. “Sit on my lap” is a string of sounds that he’d heard me say many times in this context. To him this phrase meant everything about being held; the heft of his body flopped across my chest, the fake flowery scent of laundry powder on my clothing, his sense of proprioceptive input as I squeezed him tight, helping him to feel present within his body, and present with me. There is nothing special about pronouns. J was not yet aware that there were any separate words in that phrase at all. Gestalt language processors in stages 1 and 2 are not yet processing language in words. A gestalt is a glued together chunk of language with its own meaning, independent from the words it contains. J had no reason to say it in any other way than exactly how he’d always heard it.

Many of J’s gestalts have been from the people around him, but his favourites tend to be from story books. Even now it seems like his mental architecture is mostly built from the books he loves. His favourite author is Julia Donaldson and when he was younger, he would quote her all the time. His hat would fall off in the park and he would say, “the wind blew so wildly it blew off her hat” (Room on the broom). He would take his clothes off for his bath and say, “I’m the coldest giant in town” (The smartest giant in town). I would tell him it’s time to go home and he would add “to the family tree” (Stick man).

Even now when J is frightened and unable to access more flexible language, he sometimes tells me this by saying – “Take that mask off Bernard.” This is from a book – “Alfie gives a hand” by Shirley Hughes. In the book, a little boy called Bernard wears a tiger mask at a party and frightens a little girl. This phrase is J’s way of telling me he feels frightened, just like the girl in the story.

To interpret a gestalt phrase as the sum of the words it contains is to misunderstand it. J’s gestalts were meaningful in a different way. They were not the sum of their words, instead they were the sum of all the sensory and emotional elements the phrase had become associated with in J’s mind. This gives gestalts a much deeper meaning than their literal meaning. It just might take some effort for the listener to figure that out.

STAGE 2 (When J was 3-6 years old)

If you’ve heard that autistic children can’t do pretend play or don’t have an imagination, that is certainly not true of J. This is yet another way J has dispelled common misconceptions. J lives almost permanently in storybook and role play world.

To use the phrasebook analogy, language phrasebooks are often helpfully organised into the contexts you will need the phrases for: The pharmacy, the restaurant, the airport etc. Similarly, J was most comfortable in contexts that he knew he had some scripts for, so we would role play in these worlds.

Often, he would start by bouncing on my knee pretending to be on a bus and he would then choose which world we would visit. We weren’t following the exact same scripts each time. By age 3, J was in stage 2, so his scripts were becoming more flexible. Different role play worlds could overlap and usually did. A script could be stolen from one context and adapted to fit another. Tigers would not only come to tea at our house but would also jump on the train without a ticket and eat all the snacks on the snack trolley or chase us down the beach and steal our ice cream.

J’s language would match this. He could say things like “The tiger ate all the…” from the Tiger who came to Tea book and add script from the new context, “ice cream in the cafe”. Once he had memorised hundreds of phrases, he could see that many of them start the same way or contain the same parts. This meant he could see where they could be broken apart, and then he could start mixing and matching, which is stage 2.

When in Stage 2, J’s language sounded the most complex and appropriate it has ever sounded. Our role play world was filled with familiar stories and songs and puppet characters. All were mixed and matched by loose association rather than by any sequence or logic. The worlds we visited would frequently slide over and into each other. Often it seemed like J was playing all the parts and going to all the places at once. We might be pretending to be on the train to Grandad’s house and then J would tell me we “landed on the moon,” showing me our train had turned, dream-like, into a space rocket without me having noticed.

J’s play was joyful and creative and often featured his passion for food. The moon was always a place for picnics thanks to the story “Whatever next” by Jill Murphy. Every day with J felt like a tea party in Wonderland. The only problem was, J couldn’t seem to transfer the way he talked and played with me to any other setting I tried to leave him in. Nobody else knew the scripts. Even if I tried to tell people, it never seemed to work in quite the same way outside of our bubble.

At Stage 2, J convinced many professionals that his language was better than it was, especially if they saw him talking to me. This made it difficult to get appropriate support for him. One speech therapist who visited our house commented that J was using advanced grammar. This goes to the heart of what wasn’t understood. J was not self-generating any grammar at all. Young children usually make grammatical errors. “I runned around,” etc. J never did this. His grammar always sounded perfect because it had all been pre-made for him. It was all echoed from somewhere else.

To reach self-generated grammar, J first needed to tear apart all his scripts and demolish the entire storybook Wonderland he had spent years creating. This was not an easy process for him. Even now, he is still tripping himself up over all that rubble. Yet, when I hear him trying to build with it; word + word + word, I can see why this needed to happen. Beautiful as they were, J’s scripts were never flexible enough to take him as far as he wanted to go, and I think he knew that.

STAGE 3 (When J was 6-8 years old)

Stage 3 has been described as the magic stage. The single word stage. It can be hard to understand how talking in single words is progress from talking in sentences. As an observer, it doesn’t feel like progress.

For J, the shift from scripting to talking in single words happened a few months before his sixth birthday. He first stopped speaking entirely for a few weeks, which I was concerned about. Then when his speech returned, it was exclusively single words. This coincided with some difficult experiences in our life as a family, so I was thinking, is this trauma? Is this regression? But if so, what was he regressing to? He had never been like this. I could remember him using some single word labels for picture books as a baby, but he had quickly moved on to using longer scripts and preferring story books. I couldn’t remember any previous time when he had spoken only in single words throughout the day.

Around the same time, J also started vocal stimming. He would make seemingly random noises with the intonation of speech. Sometimes I wondered if these were his original scripts, now disguised and jumbled, with all the sounds mixed around. It seemed to be something he was doing for himself, because he often did this alone, and he would switch to a single word when trying to communicate with me. I could see the stimming had a positive and regulating purpose for him, but I wondered if it was also more than that, perhaps containing some coded meaning I couldn’t understand.

The impact of this change in J on the way he was perceived by others was dramatic. Whereas we’d previously had professionals underestimate his support needs because he spoke so well. Now, all people could see was a child who was engaged in baby-like babbling most of time and only occasionally using single words. Friends and family were shocked by the change in him and didn’t know what to say to me. I had my first experiences of strangers looking uncomfortable around J when we were out, avoiding looking at us, talking over J’s head, assuming he wouldn’t understand if they spoke to him directly. One speech therapist who assessed J while still in stage 3 said she couldn’t work with him because she had too little experience of children with “such severe language delay”. I felt like I suddenly had a completely different child.

Alexandria Zachos in her Meaningful Speech course describes stage 3 as being very short. Once children break their gestalts down, first into smaller chunks and then into single words, they soon want to combine their single words to build their own original language. Gestalts then gradually decrease in parallel with an increase in self-generated language. The stage 3 phase of mostly speaking in single words is very short. In this regard, J has been unusual because his stage 3 lasted for over two years.

Stage 3 is indeed magic. It is a paradigm shift and a different way of thinking about the relationship between language and referential concepts. Sadly, I didn’t understand this at the time and my grief and fear obscured any sense of magic for me. I wanted to scream at everyone around me, J is the same child he has always been. He still understands everything I say to him. He is still capable of the same creativity and enthusiasm that he demonstrated when he was talking in sentences. I know what this looks like, but it is not what it seems!

As I reflected on this over time, I asked myself the obvious question. What am I afraid J looks like? Have I ever seen an autistic person stimming in public and made assumptions about their capabilities? Have I ever judged the quality of a person’s inner world by how articulately they can communicate that? I might be able to say, “J used to talk, so this is not what it seems.” But what if J had never spoken? Would that change my beliefs about him? There is no reason why it should. J has shown me this again and again, the assumptions made about autistic people are so often entirely wrong. It is never what it seems.

STAGE 4 (J is 8 years old)

The loss of J’s scripted world felt like an earthquake. The way it is for Alice, when she finally sees the true nature of Wonderland and it all falls down on her like a house of cards. At least, it appeared that way to me at first. Over time I began to realise J’s scripts were still there in his mind. They hadn’t collapsed. It was more like he was dismantling them gradually every time he searched for his words. Sometimes I would see evidence of this. E.g one time after swimming he pulled me out of the pool and said “frog” which he then self-corrected to “shower.” The script he was thinking of was “a shower for the frog” from Room on the broom, but he had accidentally isolated the wrong word. Breaking all his scripts into words took J a long time, but perhaps this shouldn’t be surprising. He had a lot of scripts to sift through.

It was Marge Blanc who showed me how to help J combine his single words to create his own original language (which is stage 4). When I took language samples, I realised I was still hearing a little stage 2 (it hadn’t all been lost), and his stage 3 was mostly nouns. It’s impossible to build sentences with just nouns. You need all types of words, so this was our starting point. There are grammar charts (the DST and DSS) that give guidance on the types of word combinations to model for stage 4 (See Developmental Sentences Scoring here – https://communicationdevelopmentcenter.com/asha-bundle).

I tried to follow all that. As we played, whenever J said a single word, I would expand on it by adding another word, sometimes two other words to show him how easy that is to do. Gradually J started doing the same and forming his own short word combinations in an increasing variety of ways. This was a big adjustment for J. His gestalts had been long sentences, filled with intonation and layers of meaning. That is what the adults around him sound like and this is what he wants to sound like. But that isn’t how original language begins. That can only begin one word at a time, slowly, imperfectly.

J’s stage 4 language can sound something like this:

“I…be… want… lunch”.

“Have …eat… chips”.

“Gruffalo… be… feel… hungry”

This is very different from the way J’s scripts used to sound. The grammar is often incorrect. He now hesitates between each word and his intonation is flat. When I first heard this, I realised I had never heard J sound like that before. I have met toddlers who sound a little like that, but not J. When J was a toddler, he skipped all that and went straight to reciting entire books.

For J, this is uncharted territory, and the journey has not been easy. Fluency has been a challenge because J no longer has echoes in his head to guide him. Retrieval has been a challenge because he is still searching for each word from an extensive bank of scripts in his memory. J reached stage 4 a year ago, but after the initial excitement of that, we increasingly began to encounter obstacles. J experienced multiple phases of stuttering, frustration, dysregulation, some long retreats into silence. We are now exploring AAC to take the pressure off him.

Yet, he remains stage 4 in his head. Now if he uses a single word, it is often the start of a sentence he is thinking but can’t quite get out, “Got…”, “Have…” “What…”. “Can…”

For me, this last year, especially the periods of silence, has sometimes felt the way the start of stage 3 felt all over again, as if everything J and I had worked so hard to build up together has all collapsed on top of us. However, the important difference between then and now is that now I know about gestalt language processing. Now the magic of what J has achieved so far is no longer hidden from me. Now I can stop comparing J to children who are developing in a different way entirely. Now, even when there are setbacks, I am at least looking at how far J has progressed along the pathway he is actually on, the one less travelled by, and that has made ALL the difference.

NLA SLP International Registry POLICIES

Here are the Communication Development Center Policies that we all probably agree on, because we care about our clients, potential clients, and their families. We want to remind everyone that we are not in competition with one another, rather as a team spreading our neurodiversity mindsets and providing Gestalt Language Processing and Natural Language Acquisition expertise with the world. We want potential clients to know who we are as professionals, but we don’t want to appear to be competing or end up competing with each other. We are all in this together, all learning, and all capable of learning more along with our clients and families, no matter how experienced or well educated we are.

We also presume that we are all SLPs, SLTS, SLPAS, CDAS, and not BCBAs and RBTs. We also presume that we are all ND-affirming, not compliance-based, use child-led therapy, are family focused, and acknowledge the principles of child development and the development of self-regulation.

Each of us is proud of the courses we’ve taken, readings we’ve done, in services we’ve provided in our school or clinic etc… but we’re not in competition with each other so our policy is to respect that our comment section reflects collegiality.

Here are some examples that might illustrate what families would be looking for:

  • Autistic SLP, specializing in ND-affirming client and family support
  • Multilingual; Indian subcontinent languages
  • Extensive experience 18 months-18 years
  • Experience with early childhood Stages 1, 2, and 3
  • Experience with children 18 months-10 years
  • Experience with older students up to 18-years
  • Experience with all ages through early 20s
  • Clinic-based and School-based experience and 2 NLA courses
  • In-home experience after taking the Natural Communication course in Spanish
  • Clinic-based experience with bilingual Hindi and English; completed Uncleft course
  • Team-based services in ND-affirming Elementary School
  • Currently taking the Natural Communication course after completing the Meaningful Speech course
  • OT supported co-treatment with some of our clinic-based clients using NLA and sensory integrative strategies
  • Actively learning about AAC supports for GLPs
  • AAC experience with apraxic/dyspraxic individuals and GLPs University clinic-based services for ALPs and GLPs of all ages
  • Remote services in underserved communities
  • Providing virtual consultative services in these locations

Since our goal is to both reflect your practice as you want to reflect it and maintain the collegiality we mentioned earlier, we will contact you if we feel that an edit to your listing would better reflect those values.