In my opinion, one of the most challenging aspects of autism for both the child and the parent is the deficits in communication.
These deficits can take many forms and can range from mild to severe.
For some individuals, it may mean little to no verbal communication.
For others, communication may mostly be in the form of echolalia, repeating commonly heard phrases from those around them, or a favourite TV show.
Some kids may have no issues with the verbal production of speech but use limited words when speaking or have difficulties with expressing their thoughts or answering questions.
Impaired communication is one of the three core deficits present in autism.
What all of this means is that important questions often go unanswered.
How was your day in school?
Are you thirsty?
Are you feeling sick?
Why are you sad?
Tyson is considered nonverbal and can verbally only say a few words. He does have some sounds which sound the same to us but may have different meanings to him.
Have you ever thought about all the different uses of language? There is requesting, greeting, sharing, protesting, complaining, commenting, expressing feelings, providing information, conversing, directing, asking for help, clarifying and the list goes on.
I would estimate 99% of Tyson’s communication using his iPad is requesting. The list of requested items might change from food and books to TV shows and a never-ending list of DVDs but the message is the same, ‘I want …’.
If I ask him what he had for lunch, he often can’t answer.
If he is sick, he has difficulty telling us exactly what is wrong.
If he is upset, believe me, we know it, but often don’t know why.
He does not share details about his day or comment when he sees something new or ask questions when he is unsure.
Back in 2014 when Tyson was diagnosed with autism spectrum disorder (ASD), nonverbal autism was not part of my future vision.
Family members would excitedly tell me about their dreams where Tyson had big conversations with them.
I have never had those dreams.
I long to hear his voice, even if it’s an imaginary one in my dreams.
Does Tyson have these same desires?
Does he long to express himself?
Does he speak in his dreams?
When Tyson was younger I would google nonverbal autism. What I discovered was if an autistic child was going to speak, it would be by the age of five.
Five seemed to be the magic number that would determine his future.
This is no longer believed to be true, as children may start speaking at any age, even into adulthood.
Despite googling nonverbal autism many, many times, I always believed Tyson would speak, we just needed the right intervention, the right speech therapy, the right engagement, the right therapist.
Time would solve everything.
But Tyson has been in speech therapy since he has been 18 months old.
That’s a lot of time.
And it has come with a steep financial cost.
At one point, Tyson was receiving two different types of speech therapy and it was costing us as much as our mortgage.
For those of you not part of this world, you may not understand how much-needed services like speech therapy are provided to children like mine.
Before entering school, children are eligible for speech therapy through the health care system, in our case, at the Janeway Children’s Hospital but because of the intense volume of children requiring services, there is a waitlist and limited resources available.
So while we waited for the availability of a speech-language pathologist (SLP), we did private speech therapy. Once accepted into the Janeway, Tyson was entitled to 2 separate blocks of 8 weeks.
Imagine 16 sessions to help your child learn to speak.
It’s mind-blowing actually.
And then once your child enters school, you are then dropped from the healthcare system and are picked up by the SLP for the school.
As you can imagine one SLP that is shared between schools can not provide the adequate care required.
For kiddos like Tyson, that require intense intervention, the school SLP acts solely as a consultant to his school team and would not see Tyson regularly to ‘practice’ speech.
So we have continued to take Tyson to private speech therapy since he has been 18 months.
And although his verbal speech has not advanced, his communication has.
Many individuals on the outside may not see the value of 8 years of speech therapy but I would not trade a minute of any of it.
Before therapy, Tyson was trapped in a world in which only he was present.
He had little to no communication of any form.
He did not respond to his name.
He did not understand us when we spoke to him.
And he did not share anything with us.
His communication has come a long way.
It’s a work in progress and probably always will be.
I truly believe in my heart if he did have the ability to speak, he would have lots to say – scripting from television shows, singing his favourite songs, and telling us what he wanted to order from Amazon.
He is a big lover of music (right now Sky Full of Stars, Natural by Imagine Dragons, and Bohemian Rhapsody which he can spell, by the way, are his favourites) and sometimes ‘sings’ along using his sounds.
I have accepted the nonverbal part of autism but every now and then it hits me like a ton of bricks.
The other night at the top of the stairs he gestured for Mark to come up.
We have been trying to push Tyson to use his communication iPad more, despite knowing perfectly well what he wants.
It was then I said to him, ‘do you want dad? You need to ask dad to come?’
Tyson responded with ‘ba-ba’. (Ba-ba is Tyson’s word for me, the ma-ma).
‘Oh, you want mom?’, I asked.
He said ‘Ba-ba’, as he pointed to Mark.
And it was then it hit me, he had lost the ability to say dad.
Over the years on this autism journey, Tyson has lost and gained the ability to say multiple words.
It’s a never-ending cycle.
But dad and bye have been two constants – the two words he could always say.
And now one of them was gone.
But it was a good reminder that we need to do our daily practice again.
5 words, 3 times each.
Tyson doesn’t enjoy it. Neither do I. But it’s necessary.
Sometimes I get sidetracked, shift my focus, sloppy, lazy – whatever you want to call it. This is a reminder that I can’t do that when it comes to his speech.
The reality is he can’t use his voice to communicate his basic needs and wants, so should it matter to me that he can’t say dad?
It’s just one little word.
I’m not sure, but it does.
It bothers me to my core.
The goal for Tyson has always been communication, to provide him with the tools he needs to express himself.
And that is why we purchased the Proloquo app to help him achieve this.
And so now it’s time to shift our focus in his weekly speech therapy appointments.
We are going to focus on his AAC (augmentative and alternative communication) or in other words, using his communication iPad with his speech-language pathologist.
The goal is communication, in whatever form.
And for the first time in many years, I feel excited. It’s a new path. One that I did not expect us to be on but here we are.
And I know we will get there, as I have a feeling he has a lot to say.
Stay tuned ….