Speech delay is often one of the first noticed signs of autism. Young toddlers are diligently watched to make sure their speech is developing “as it should”. If it doesn’t, parents are usually advised to put them in speech therapy so that they might “catch up”. Some do, some do to a certain extent and some don’t at all and they are usually referred to as “nonverbal” or “severe”.
It is true that an atypically developing speech often signals an atypical brain. Being parents of a four and a half year old girl who used to speak and now doesn’t, we have spent a lot of time pondering why she doesn’t speak anymore, how we can help her communicate and even what she could be thinking. I always felt that my quest to help her communicate was a worthy and imperative goal. I haven’t abandoned this philosophy but have recently realized that like most everything with Sophie, it’s not quite so simple.
When Sophie was a young toddler she had a lot of words, in fact more than all her siblings did between 12-18 months. Interestingly (and in retrospect) most of the words she had were nouns. She used words to request things – “apple sauce”, “mango” or to name them – “hat”, “mama” , “every Thomas engine name”. She never used words to demand actions such as ” go”, “give” etc. She did say “help” and “hi” and “bye”. All together she had about 50 words.
After she suddenly stopped speaking, and was subsequently diagnosed with autism, we went through a brief period of shock and mourning. Then we made our rounds of the funded therapists. Quickly I realized that if a child is even minimally verbal therapy can implement many strategies and techniques to coax more words out. However a child like Sophie who lost all her words, had no interest at all in the therapist or her toys and actually fell asleep in all therapy settings? There was not much the therapist could do with that. When we suggested (after two sessions) that perhaps we will let her mature a bit I think I saw a flicker of relief on the therapist’s face.
I decided to take matters into my own hands. I researched and it seemed PECS (picture exchange communication) was the way to go at that point. Anybody I mentioned it to looked at Sophie in disbelief. They didn’t think she was “ready”. Somehow I felt she would connect pictures of objects and actual objects without an issue. When I made my first batch of pictures and was still sticking Velcro to them she came up and grabbed the picture for orange and handed it to me with an expectant expression. “She’s a genius!” I thought. I imagined a thick binder of PECS for every occasion. Having card-exchange conversations about all topics under the sun.
A year later not much had changed. While she effortlessly picked up cards to request snacks, she showed no interest in even the most basic conversations. At that time she had her first (and only) block of ABA , 4 hours a week of PECS-themed trials. She skated through the program achieving a 98 percent accuracy and reaching phase 4 of PECS. And yet… It didn’t really change anything in our life other than giving us the knowledge she can find a picture of Skittles in page of PECS and hand it to us flawlessly without bending or chewing the card (because that is a critical part of successful communication).
A lot of her success hinged on providing highly motivating items (such as candy) and putting them just out of her reach so she could ask for them. Giving her a piece of candy upon her proper request, recording data and repeating the trial. While admittedly it was somewhat satisfying to see her grasp this concept and “perform” it had no significance in the grand scheme of our life. It was like a party trick, which while cute we had no intent of implementing. We don’t dangle treats in front of our other kids’ faces and make them beg for them and we weren’t planning on doing it with her. We took our glowing report of her success and filed it under “things we won’t be doing again”.
It was then I thought perhaps the issue was the PECS. I’ve been reading a lot about AAC on the iPad and thought a more complex system might motivate her to communicate. After much research we chose the app “Speak for Yourself”. I read many success stories and thought this will be it. I never doubted Sophie was smart. I assumed the right communication system was the last piece of the puzzle that would unlock her for us. At first it seemed I was right. While the app is complex and the icons small Sophie seemed to instantly understand the concept, tapping out 5-screen phrases within days “no I watch Thomas” was her longest utterance. “She IS a genius!” I thought again. I imagined us sitting on our couches texting back and forth on our apps. Finally, we will know what she’s thinking, she’ll let us into her brilliant mind we feel we only see the edges of.
Except… A year later again and again not much has changed. While we are implementing all strategies and both schools are on board with modelling words for her throughout the day, Sophie’s most used phrase is still “drink juice” (which was the very first phrase she said with her app). She sometimes glances noncommittedly at what is being modelled but shows zero interest in exploring the app and no glee at having words literally at her fingertips.
And then one day as I was sitting in the kitchen and she walked in dragging her iPad, past the pictures of foods stuck on the pantry and I saw her look at me then throw her head up towards the box of granola bars sitting up on top of the pantry something clicked in my mind. Communication is more than words.
She communicates with us everyday. Her glances, touches and sounds are loaded with meaning. She shows us what she wants by herding us towards the item and placing our hand on it. If it’s beyond her reach she looks towards it. If she doesn’t want something she pushes it away or gives the slightest shake of her head. When she’s content or thoughtful she hums softly. When she’s happy she squeals and giggles. When she’s mad or frustrated she mutters angrily (she’s rarely angry though).
I’m a very verbal person. I think in words predominately. I write, I read, I can’t watch tv without closed captioning. I wanted to give her all the words because they’re so important to me and I couldn’t imagine someone not wanting them. But after that day in the kitchen I realized that words might not be Sophie’s first language. She will learn them I don’t doubt, like many of us learned a second language. We won’t stop offering her many means of communication and will keep modelling on her app. It is our hope that she will learn the words to use when she wants to use them.
I thought I needed words to really know Sophie. That to know her was to know her thoughts, expressed in full sentences. I worried I wasn’t getting the full picture of Sophie without words. That she was harbouring hidden ideas and desires she couldn’t express. I thought that she is suffering, locked in her mind.
But then I reflected – for a supposedly suffering person she looks pretty darn happy. Maybe happiness really is a box of juice, a granola bar and Thomas on the iPad. Maybe other, more abstract thoughts are expressed in patterns and shapes and sensations. Maybe she thinks in a way my brain can’t even comprehend. And hopefully, one day she will learn my language of words and will tell me about it. But until then- I know her. I know her well.