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.

On The Art of Being Real

To love is to be vulnerable, to risk suffering and uncertainty. The world promises safety to no one, however much they are loved. And yet we love anyway, because that is who we are. I feel this most acutely now I’m a parent, but I have known it all my life, and I learned it first from Elsie…

When I was two years old, Elsie the toy rabbit went everywhere with me. Her body was soft and brown, except for her long arms and legs which were a silky purple and closer to human than rabbit. I would hold her by her hands and by shifting her weight from side to side, make her legs move as if she were walking. Or she would sit, hopped against me as I recited my storybooks from memory, usually stories about rabbits, a persistent interest for me at that time, “It is said that the effect of eating too much lettuce is soporific.” Beatrix Potter was never one to talk down to children, and that was fine with me. I didn’t need to understand all of it. It was enough to imagine those watercolour rabbits wandering around the countryside, dressed in their old-fashioned clothes, enjoying fancy tea parties in their burrows. I had no doubt real rabbits did all those things. Of course, they did. But only when no one was watching. It had always seemed to me, from very young, that there were two worlds – The outer world that was obvious to everyone, and the inner world, which never properly matched the outer world and so had to stay hidden.

When I told my father it was Elsie’s birthday, he gave me a cake, put some candles in, lit the candles. Then he sat down opposite me with his instant coffee and started reading his newspaper. I knew the script for birthdays. I sang to Elsie, then lowered her over the cake so she could blow out her candles… My mother (who is now divorced from my father) still winces at the next part of the story, “What was he thinking? Why wasn’t he watching you?” I can’t answer that. All I know for sure is he leapt from his seat to protect me from the consequences. Elsie’s face sizzled with steam as it hit the water in the kitchen sink, my wide eyes glimpsing the horror for the briefest of seconds, the charred fur slipping from her cheek, exposing the bruise of red and blue stuffing beneath. My father was quick, swooping across her with a long white bandage, concealing the damage and assuring me she would make a full recovery. It took my mother a few nights to reconstruct Elsie’s face. She couldn’t find any brown fur, so she used black fur instead. This left Elsie with a face that failed to match the rest of her body, and a new bewildered expression, with misshapen eyes, nose, and mouth all fashioned for her out of old scraps of felt. To me, she was as perfect as she had ever been.

All this meant for much of my childhood I dragged around a toy rabbit that other children would laugh at. Why are you playing with that ugly old thing? Why does it look like that? I would respond by hanging my head and clutching Elsie closer to me. I was an anxious child and rarely spoke outside my home. Yet at night I would speak to Elsie, whispering into her long ears, telling her how lovely and beautiful she was. Those other children didn’t know her the way I did. They would never understand her, just as they would never understand me.

I was around six years old when I was given The Velveteen Rabbit – Margery Williams’ classic story about a toy rabbit, so loved by a child that it is worn out, with bits dropping off it, and through this experience becomes Real, “Generally by the time you are Real, most of your hair has been loved off, and you get loose in the joints and very shabby.” I can now read this book as a metaphor for the vulnerability we all experience when we let ourselves be known and loved, yet to six-year-old me it was a book about another Elsie, and I read it endlessly, “Because when you are Real, you can never be ugly, except to those who don’t understand.

Many years later, I am mother to J, my beautiful autistic boy whose disability is obvious to anyone who sees him struggling to communicate, needing to touch everything in sight, stimming loudly and wildly. I sometimes find myself thinking about that velveteen rabbit, seen by other rabbits as not quite real, as not like them, and I wonder what it is about difference that makes people so uncomfortable?

I witness this discomfort infrequently enough for it to be a jolt, snatching my breath and ejecting me from the moment I was in, yet often enough for it to land me in familiar territory. I recognize the awkward shuffling, the unspoken judgment, the eyes that widen then flit the other way. The little girl in me feels exposed by this – They have seen what wasn’t safe to reveal. She wants to run. To bring her baby home, to wrap him up in blankets and hold him close, to tell him he is lovely and beautiful, that nobody knows him like she does. To feel his breath, warm against her cheek as he whispers his favorite scripts to her, to see his smile as she whispers them back. Non-verbal they call him. But what do they know? They will never understand.

Yet I stand my ground, because I know the cost of hiding. All the meaningful relationships I now have were formed through allowing ourselves to be seen as we are, through understanding each other more deeply over time. I want this for my child too. It is okay to want this – Although, that isn’t the message parents always get. There are professional industries that capitalize on the fear around autistic difference, promising to mold and bribe a child into meeting external expectations, promising an easier life. But who is that easier for? When an autistic person continually masks who they are or hides themselves away to make others more comfortable, they are broken by this, becoming ever more isolated and exhausted. In J’s case, I don’t believe he has that option even if he wanted it. His body is often at the edge of his control and sometimes beyond it. He can only move, feel, and be as he is.

Compelling autistic people into invisibility, either through masking or through segregation, is also a profound loss to everyone else. There are real friendships never being made. Passions that are never shared. Creativity that is never seen. Damaging assumptions about what it means to be autistic that are never challenged. Narrow conceptions of what it is to be human that are never expanded. We are all diminished by this.

Connecting with someone different from you can feel scary. When someone looks to me to help them interact with J, I’ll be grateful they asked, but I can give no guarantee that their experience will be free from uncertainty and awkwardness. This is no reason not to try. J needs human connection as much as anyone else. It means a lot to him if you achieve that, even for a moment, so this is worth leaving your comfort zone for. As the most well-known advocate of vulnerability says about this, “There is no courage without uncertainty, risk, and emotional exposure.” I am sure Brené Brown is right about this, but it must also be acknowledged that the risks she refers to are not the same for everyone.

Parents can worry about taking their children places when they hear, “Of course, everyone’s welcome here, but can you make them be quiet and sit still?” And I’ve heard many autistic adults say they feel a constant message of, “Just be yourself… But not like that!” Those who don’t understand are numerous, and many willfully so. The risks to an autistic person of being their real self are considerable, for some people in some situations dangerously so. The onus cannot all be on autistic people to be brave and vulnerable and forever explaining themselves. We need to make the world a safer place for all humans to be who they are, a place where we all present ourselves honestly, where everyone is included, where we all take the time to view each other with openness and kindness.

So, if you’re looking for J and me, you will find us right here, out in the world with everyone else. This life we’re patching together might seem different, but that doesn’t make it ugly. There is no need for you to look away. Like any love when it is real, ours might look imperfect, home-made, improvised. This is its beauty.