“Dreyson’s results are consistent with that of Autism Spectrum Disorder”
Autism. Such a stigma around this one word.
Here is our journey with Autism so far and how we got here.
In 2012, I gave birth to a perfect little boy. My promise from God, safely delivered. He passed all of his newborn tests, and we were sent home to begin our new life together as a family.
Dreyson’s development was fairly “normal” (or so I thought) as he was growing up, transitioning into toddlerhood. He seemed to be meeting the typical milestone expectations, but he was a little behind in his speech development compared to kids of the same age.
He was also very shy and clung to me ALOT.
He had separation anxiety from me that seemed to last forever. I’d read that separation anxiety was normal for the 8 month to 11 month mark, but fast forward and here we were at 3 years old and the separation anxiety had never really left.
He was so shy he’d go and hide if someone came to our house and would take sometimes up to 30 minutes before gathering the courage to come out.
If a stranger at the shops commented on his hair or asked him what his name was, he’d either completely turn around and not look at them, or he’d hide behind my back.
So this was just Dreyson, I thought. He’s just shy. Like me in a lot of situations. I was forever telling strangers “he’s just shy” whenever they asked him a question and he didn’t respond.
But that’s just him, I thought. He’ll be more confident one day and catch up with his speech. Like they say, “All kids develop at different rates”.
At 3.5 years old, I booked him into speech therapy over the phone, but due to my comments about his shyness, I was given an assessment of sorts before we could get the referral for speech therapy.
The assessment questions were along the lines of:
“How are your son’s fine motor skills?”
“Can your son draw a circle?”
Nope. Not yet.
“Can your son complete a simple shape puzzle?”
Not yet. He seems to try and make the shape fit the same way over and over, and doesn’t realise he can turn it around to make it fit. Nor will he accept anyone’s help in showing him!
“What is your son like in social situations?”
The event earlier in the day came to mind, when I had taken the kids out to the coffee shop with a friend and her same aged daughter.
The daughter was trying to communicate with Dreyson, but he was so shy and overwhelmed that he sat on the floor under the table and turned his back on her, refusing to look at her. Even with his smiley face cupcake sitting on the table that I had let him pick out!
From this information I relayed to the kind lady on the phone, she said she had some concerns and we would need to book Dreyson in for a Multi Disciplinary Assessment.
This would involve a Speech Therapist, Occupational Therapist, Paediatrician and Psychologist.
So it’s now August 2015, and we head into the Multi Disciplinary Assessment. As soon as the door opened I knew that Dreyson was not going to “open up” as it was a very intimidating setting: 5 specialists all sitting in chairs in a half circle, with a blue play mat with toys right at their feet, so they could observe Dreyson.
He clung to me so tight, it looked like we were doing the three legged race as we were walking in!
The assessment basically involved Dreyson sitting on the mat, with me or Andre sitting with him as he wouldn’t sit by himself, while one of us talked with all the specialists.
One by one, the specialists would sit with Dreyson and observe him and attempt conversation with him.
In the end, they said he was too difficult to assess because he wasn’t talking or showing what he could do. They couldn’t tell if he had the skills to do what they asked and just refused to do it, or if he couldn’t understand what they were asking of him. But they said he showed social and separation anxiety and an obvious speech delay.
We were handed an assessment report and put on the waiting list for Speech therapy and Occupational therapy.
3 months later, Dreyson begins Occupational therapy. This seemed strange to me at first, as he was so good at running and jumping and had excellent gross motor skills. But fine motor skills are also very important as I’d come to learn.
During Occupational Therapy, the therapist picked up Dreyson’s trouble with motor processing. She could show him how to put his fingers into the scissors to be able to cut the paper properly, but he couldn’t copy what she was doing and was unable to follow her instruction. He also couldn’t hold a pencil correctly, feed himself without spilling the food everywhere, pedal a bike, put his legs into the right holes to pull his underwear or pants up, or draw anything but a scribble. These were things I had noticed but thought he was just still learning and would catch up. The therapist said it was more to do with processing behind those tasks, and that there was a problem there. She continued working with him and he showed a lot of progress. By the time we left there he was pedalling a bike, feeding himself better and was getting faster at putting his clothes on by himself.
Six months later, speech therapy begins.
The speech therapist made Dreyson feel comfortable and he liked to play with her.
She kept saying Dreyson was a “unique” child, and I didn’t know what that meant.
A few weeks into Speech therapy, Dreyson is tested using the standard language assessment for his age group.
His results revealed “severe expressive and receptive language problems”.
I didn’t quite agree with those results, as Dreyson was very expressive with us at home! But it was a rigid test, and he didn’t understand a lot of it, or even finish it, and I suppose the results reflected that.
It was at this point that the therapist recommended we contact an Early Intervention Program.
Before we were able to see the Early Intervention Program, we needed a referral from a Paediatrician.
We see our Paediatrician the next month, who is very thorough and listens to all of our concerns. At the end of our appointment he says he doesn’t think Dreyson has Autism, but he is definitely a “unique” child who has a different way of processing things. There was that word again! “Unique!”
He wants Dreyson to have genetic testing done, to rule out any possibilities of a genetic abnormality and we are to see him again in 3 months.
Meanwhile, we have our first meeting with the early intervention provider. This was where we first heard the word ‘Autism’ being thrown around. It went for 3 long hours and we were informed all about Autism and it being a spectrum. About how some kids with Autism are “high functioning” and have mild Autistic traits while others are severe and need lifelong support.
We were told our son had many indicators of Autism and we should have an ADOS assessment carried out. We left that meeting feeling totally overwhelmed.
We thought our son was just a little behind. Now we’re hearing nothing but “Autism”. Yes, it did seem that a lot of Dreyson’s behaviours and delays were like those of the kids on the spectrum that she had spoken about, but at the same time this was our 4 year old son. Shouldn’t we know by now whether he has Autism or not?
Dreyson’s genetic testing came back and he tested negative to all genetic abnormalities.
We booked in for the ADOS assessment and on the day, took him into the tiny room to be assessed.
He spent the first 10 minutes with his head in my lap, refusing to come out when the psychologist was trying to interact with him, but she managed to get his attention by running a toy car into his leg and crashing into him.
He slowly warmed up and was able to be assessed.
We thought he had done quite well and even the assessors said he would probably have borderline results, and not a conclusive result of Autism.
So when the results came back and we were told he scored in the moderate range for Autism, and that it was consistent with a diagnosis of Autism Spectrum Disorder , it was a bit of a shock.
We took the results to our Paediatrician appointment a month later and he gave us the official diagnosis of Autism.
He told us he was wary of giving him the “label” of Autism, but knew that in order for him to receive the help he needed (in terms of therapies and government funding) he would need an official diagnosis.
He wanted to see him again when he turned 6, to see how much progress he has made with early intervention, and possibly even remove his diagnosis.
So here we are now. Dreyson attends weekly speech therapy and occupational therapy and has just started at the early learning group they have at the program. It’s like a small class in a preschool setting but with more teachers to focus on each child individually and their needs. We believe this is the best thing for him this year, as he prepares to start kindergarten next year.
He has come so far in such a short amount of time. He’s now interacting with many kids and doesn’t need time to warm up with a lot of them. Some overwhelm him more than others. (As an introvert, I can totally relate!)
His speech development has improved tremendously and strangers can now understand him.
He (mostly) no longer cries when we drop him off at preschool, and he has made a friend there that he looks forward to seeing every week.
And he now not only pedals a bike, he rides his bike without training wheels!
Since first publishing this post on my blog, Dreyson has had his diagnosis of Autism confirmed through a developmental assessment carried out at the hospital. We were told specifically “He is on the mild end of the spectrum, but this is something that won’t ever leave him.”
Whether that’s true or not and regardless of the label Dreyson has been given, he will not be defined by it. He may have some challenges, but by the grace of God and the help of early intervention, he will overcome those challenges. God has a perfect plan laid out for him, autism or no autism.
He is an incredible boy, talented, clever, funny and sweet and in my eyes, my baby boy will always be perfect.
For more information on Autism Spectrum Disorder click here.