Bright, blue eyes. Tangly, curly hair. Handsome face. Energetic. Stubborn. Determined. Strong.
Autism Spectrum Disorder (ASD). Attention Deficit Hyperactivity Disorder (ADHD). Apraxia of speech. Sensory Processing Disorder.
Two very different lists. It is the combination of the two that makes Tyson who he is.
The beginning years focused heavily on the second list. The list that was associated with all the things Tyson could not do. The list that seems to grow as time goes on.
When a child is investigated for ASD there are three broad areas that are observed: 1) communication, 2) repetitive, restricted behaviours and 3) social interaction.
When I think about toddler Tyson and our beautiful boy now, all of these struggles are still a very big part of his life, they just present a little differently.
When Tyson was 8 1/2 months he said his first word, dad of course, which was followed by bath and bye. I don’t recall thinking it was odd that he did not say mom.
What I did not know at the time was that Tyson would regress and lose those beginning words. I regret not getting a video of that sweet little voice saying dad. I guess it goes along with the territory of being the second child.
Before I became a parent to an autistic child, I never really thought about communication. As parents, we think in terms of words. First words, new words, the number of words, curse words. I remember recording in Lincoln’s baby book that he had 50 words at 18 months. It’s all about the words.
However, there are actually lots of ways to communicate besides speech – facial expressions, body language, gestures. Many children with autism often have difficulties with all these types of communication.
Toddler Tyson was not using any forms of communication – no words, no sounds, no pointing, no gesturing, no eye contact. Nor did he respond when you said his name. It is really hard to remember how things were back then. No shared smiles, no silly looks, no pointing to show you something. Basically no communication.
Although Tyson’s verbal communication has seen very little fluctuation over the years, we are now at our all time low in terms of the words and sounds Tyson can say, which is hard to believe after 6 ½ years of speech therapy. Tyson can say dad, baba (that’s me, the mama), pop, bye and ‘es’ for yes. It’s been hard to see him constantly regress in verbal speech. At one point he had about 20 words or word approximations. That list is still pinned to our cork board.
But if he said it before, he can say it again. We will get there.
I am truly grateful for how far Tyson has come in all the other forms of communication. He currently uses a communication app called Proloquo to speak for him. His eye contact is improving. He points and drags us to show us what he wants. He stomps his foot or slaps his leg for no. His typing and spelling skills are lit (as Lincoln would say). And his facial expressions are priceless. Lets just say if looks could kill, me and Mark would be in trouble.
And he shares with us – he shares his happy, his anger, his sad – in his own special way. And how can we not be grateful for that!
Repetitive, Restricted Behaviours
In terms of repetitive, restricted behaviours I did not see these signs as easily when Tyson was little. He did not line up toys, or look at things out of the corner of his eye. He did not rock back and forth. However, he would often hop along the floor on his hands and knees. He would spin in a circle over and over again without getting dizzy. He needed to have doors closed at all times or he would become very upset. He placed his juice in the exact same spot on the table every day. And when I say exactly the same spot, I don’t mean the general area, I mean the exact same spot.
Present day, Tyson’s repetitive, restricted behaviours are a little more subtle in many daily settings. He may do the same action over and over or follow the same path (up one side of the bed, tumble, down the other side). When excited, he may jump up and down. When he is really upset or dysregulated, he will pace.
I think the most noticeable repetitive, restricted behaviour involves Tyson’s electronic usage. He prefers to watch the same clip of a show (~ 15-20 seconds) over and over again. It’s usually a funny part or a very specific sound or phrase. Well, what he actually prefers is to watch TV, his iPad, his DVD player and listen to music all at the same time. It’s amazing to see how he can control all devices simultaneously and keep each one playing the exact same clip. Amazing … and well a tad annoying.
His restrictive behaviours have trickled over into food preferences but that is a topic for another day.
In terms of social interaction, toddler Tyson showed very little interest in people. He did not acknowledge people when they entered a room or have a desire to interact with adults or children. I do not remember baby Tyson having the same lack of engagement. He would watch people, smile, laugh and do all the things that neurotypical babies do.
It was like a switch was turned off when he turned one. It is actually fascinating to think about how the brain works, until you stop and remember it’s your child.
Tyson still has major struggles with social interaction. Although he now will notice when a person comes into the house, he does not necessary seek them out. Unlike most children his age, he does not seem to want to play with other kids. He is working on more or less tolerating other children next to him.
Tyson’s interaction with adults is mostly to get needs and desires met. He will tell us if he wants food or wants to go outside. He will show us DVDs and books with the premise that we will take him to the store to get them or order from Amazon.
I think no matter how much time passes, Tyson will always need support in these areas. Right now, our goal is to take it day by day, helping him become the most independent version of himself that he can be.