My son’s autism diagnosis

This year my son Aran was diagnosed with autism at the age of seven.

We were surprised, too.

This is not something we ever would have predicted. It’s been one of the biggest challenges I’ve ever faced… and to watch our son struggle in so many ways has been even harder.

And yet, our son is such a blessing and such an awesome kid. We are so thankful God entrusted him to us. We’re incredibly imperfect, messy parents. But God gave us a very special gift when he sent us Aran. He must really trust us a lot.

Today is World Autism Awareness Day, so I wanted to take the opportunity to do something a little different from our usual homemaking posts and share with you our autism journey.

Every autistic child is different, unique and precious. This is our story.

 

I gave birth to Aran when my first son, Jaxon, was only 17 months old. We settled on his name as I was in labour. I was so sure he was going to be a girl that I had a whole list of girl’s names picked out, but nothing final for a boy!

We decided on Aran because I loved the meaning of the name. It means “mountain of strength.” Each of our three sons has one of the tribes of Israel as their middle name, and Aran’s middle name is Judah, meaning “Praised.”

I had no idea at the time how fitting his name would turn out to be.

I had a special bond with Aran right from the start. After going through emergency Caesarean with my first baby, I was determined to have a natural birth for my second. Aran turned out to be the only one of my four children to be delivered naturally.

He was also the only one of the four that I was able to successfully breastfeed. Although I’d been plagued with low supply issues with all my babies, Aran and I hung in there by the skin of our teeth, and he ended up breastfeeding for nearly a whole year.

I think God was preparing me for the challenges ahead. Our special bond has carried us through a lot together.

Aran was strong and active from the very beginning. I got the shock of my life when he was 2 weeks old. I laid him on his back to sleep, but when I came back into the room, he’d flipped himself over onto his belly!

Surely a weird fluke, I thought. It’s impossible for a baby to roll over at 2 weeks old! My first child was an extremely late roller, so this really startled me. But it happened again a couple of weeks later, and then again at random intervals after that.

Aran was a wriggly little baby, always moving. I would put him down on his back in the middle of his bassinet, only to hear him crying some time later and find him smooshed up against the wooden bars all the way down the end. So I would move him back to the middle, only for it to happen again.

Like the rolling, this started right from his very first month of life, and it had me scratching my head. Newborn babies were supposed to stay where you put them… right?!

For the first 6 months after Aran was born, I survived on 3-4 hours sleep a night. He was a restless sleeper, and wouldn’t settle for more than 10-20 minutes on his back without waking and crying. Eventually I was so desperate for sleep that I started putting him down on his stomach (to my initial guilt and trepidation). He did much better that way. To this day he still sleeps on his stomach… he seems to crave the deeper pressure.

I spent hours during the long nights rocking him in his cradle, the only other thing that seemed to settle him. He was a baby that craved movement, rocking, and being tightly swaddled and closely held.

But apart from these few little quirks, which honestly could have described many babies, there were no red flags that anything was amiss. Aran was a beautiful little baby who grew into an adorable toddler.

As a little tot, he was no trouble at all – a sweet natured, compliant little boy. When Jaxon (only 17 months older, and still so little himself) snatched a toy off him, Aran never screamed or cried. He just let it go.

Jaxon had been an epic tantrum-thrower as a 2-year-old, so when the so-called “terrible twos” rolled around for Aran, I was pleasantly surprised that he didn’t start throwing tantrums. In fact, I was thrilled. It looked like I would have an “easy” child for my second!

Little did I know.

At around 3 and a half – about the age Jaxon had stopped throwing tantrums altogether – Aran’s meltdowns began.

It threw me for a loop. I thought we’d dodged the tantrums. Instead, they were only just beginning (unusually late, it seemed to me) and instead of improving over time as I would have expected, they grew steadily worse as he got older.

I didn’t know at the time that these were not tantrums at all. They were autistic meltdowns, and there is a difference. A meltdown is a complete loss of control. Aran would get so angry and frustrated over seemingly minor issues that he would scream, cry, rip the room apart, kick, punch, and hit himself in the head. These tornadoes of emotion left me stunned and wrecked and left Aran spent.

Still, I’d been through an exhausting couple of years of tantrums with my first, and Jaxon had grown into a delightful and well-behaved child, so I assumed Aran would also grow out of this phase. He was so sweet-natured, after all. Oh, how I adored this little boy!

 

One of Aran’s strengths was entertaining himself. When Jaxon was 3 and Aran was 2, I had my third baby, Allegra. Once again, I had a great deal of trouble with breastfeeding, and the little tots had to entertain themselves a lot while I was stuck on the couch in an endless loop of feeding and expressing. Aran would spend hours out in the backyard “playing” with the ants… studying, capturing and collecting them. It was a singular obsession that continued for years.

We were amused by his interest, but didn’t think too much of it. In hindsight, we know that autistic children often become obsessed with narrow interests. Another red flag that we simply didn’t think anything of.

When he started kindy, however, it started to become obvious there was a problem.

 

 

His teacher expressed concerns. Aran had trouble sitting still and focussing. He was always on the go, constantly wriggling and fidgeting and moving and rolling around on the floor.

He also seemed to find it difficult to relate socially to his peers. He was incredibly tactile and always in their faces – literally. He would get up close and rub his nose on their cheeks; try to press his forehead against theirs. He was always touching and bumping into other kids until they became annoyed with him. When he saw other little boys playing with cars and wanted to join in, he would crash into the middle of the game and scatter cars everywhere.

In the sandpit, he would sit for ages tossing sand hypnotically. No matter how many times he was told not to throw the sand, he couldn’t seem to help it. It was often hard for the teacher to get his attention – he didn’t seem to “hear” his own name.

Sometimes you are so close to your own children that you are the last person on earth to see that there is a problem. Aran had a few odd habits, sure. At home, he would zoom in on our faces until we were eyelash to eyelash. He would spin in endless circles – it seemed to make him happy. He was always crashing and rolling and jumping. But those were just typical boy behaviours… weren’t they?

The concerns intensified in Prep. His behaviour at school was silly and hyperactive, and increasingly uncontrollable. He was clumsy and uncoordinated. Aran struggled to hold a pen and to shape letters on the page. His teacher suspected issues with sensory processing, and recommended a good occupational therapist.

We began OT when he was 4 years old.

It was a game changer straight away. The OT did a lot of testing, and Aran was found to have Sensory Processing Disorder. This was completely new to me, but immediately explained so much.

Sensory processing issues are a major part of autism, although at the time it never occurred to us to consider that Aran might be autistic. Instead, I started reading everything I could get my hands on about SPD.

I learned that our brains are constantly processing input from all our senses – sight, touch, sound, etc.  This is a complex process that involves inhibiting many nerve impulses in order to filter out unnecessary information, so it doesn’t overwhelm us with a flood of detail.

With some developing brains, this process goes awry, and ALL the incoming nerve signals get inhibited by the brain. A child with this issue (sensory under-responsiveness) craves more stimulation than what they are receiving through their senses. Therefore, they become “sensory seekers” – hence the touching, bumping, crashing, spinning, and getting up in everyones’ faces. It’s a neurological drive that they can’t easily control (like when we feel we have to scratch an itch, or shake a restless leg, or stand up and stretch after sitting for too long.)

Other children are over-responsive, and any sensory input feels magnified and intense and overwhelming. They can’t filter out anything. Just to make things complicated, Aran has issues with this at times, too. Too much sensory input is extremely overstimulating for him and can cause anxiety and uncontrollable behaviour.

 

He was also found to struggle with auditory processing (ah – that explains why he could never “hear” his own name being called) , knowing where his body was in space, gross and fine motor skills, and motor planning (getting a message through from his brain to his body.)

With therapy, he improved immensely in many areas. His handwriting went from barely legible to very neat. His balance and co-ordination improved. He learned how to regulate his own body better using heavy work activities such as wall push-ups and wall squats. We learned deep pressure techniques to calm him down – rolling him in a gym mat; squashing him on the couch.

Most of all, his confidence blossomed as he mastered basic skills. The meltdowns became fewer as his frustration receded. He started carrying himself with his chin held high, and feeling like he had something to offer. It was beautiful to see.

At the time, it didn’t occur to me that there was any more to this story. We thought SPD was the answer.

But after two years of therapy, Aran’s progress plateaued, and then began to decline.

His behaviours became increasingly worrying to me. Instead of improving as he matured, his quirks and oddities seemed only to become more pronounced. The older he grew, the less socially acceptable many of his behaviours became, and the less we could pass them off as a childish phase.

Aran began vocalising oddly and repetitively. He seemed to feel the need to shriek and scream, often nonsense rhyming words. “SHRIMP! BLIMP! PIMPLE!” he would shout, over and over again. A few days later, it might be, “DOG! HOG! SOGGY!”

His self-regulation went out the window. Things that had previously worked to calm him stopped having any affect. Disregulation became a daily, often hourly, reality. Aran often attacked his siblings, shoving and tackling them. He tore through the house like a tornado, crashing onto the couch and spinning in wild circles on the floor, shrieking and screaming the whole time.

Even a task as simple as getting dressed for school became impossible. In his mania, he would whip his clothes at whoever passed by, fling them into all corners of the room, then go completely limp and floppy on the floor and giggle uncontrollably. Many, many days I’ve had to physically dress him myself, wrestling his floppy, thrashing limbs into his clothes by force.

The meltdowns returned with a vengeance. We had holes kicked in walls. In his rages, Aran would scream as if he was possessed, until his eyes stood out and his throat was raw. There were times I actually felt frightened of my small son. After one meltdown in which he tore his entire room apart, I sank to the floor in the kitchen in foetal position and sobbed my heart out in utter despair. I was completely drained and at the end of myself. I felt like the worst mother in the entire world. I couldn’t understand why nothing worked with this child. He didn’t respond to any of our usual parenting strategies. He seemed totally out of our reach.

Despite how rough things were at home, Aran had been doing pretty well at school. He seemed to be able to hold it together in the classroom… most of the time.

Holidays, on the other hand, were an absolute breaking point. I didn’t understand at the time why they were so hard. Now I know that autistic children can’t cope with changes in routine.  With Aran, change provokes anxiety and over-excitement in equal measure – which in turn, means a living hell for us at home. This explains why he functions so much better at school, where the structured timetable gives him a measure of predictability that helps him feel safe and in control.

I figured out that having set routines helped, so I went all Nazi with charts and day plans and visual cues to get us through the holidays.

Still, every minute of every hour of every single day was an immense battle. Trying to get the kids out of the house felt like an impossible task. Dealing with a baby while simultaneously trying to stop Aran destroying everything was a losing proposition. I felt like I was losing my mind.

 

 

We began seeing a paediatrician to try to get to the bottom of what was going on. So began a round of testing, paperwork and psychologist visits.

In the process, we learned a few things that came as a surprise. For instance, testing revealed that Aran had virtually no ability to read facial expressions. How could we never have noticed this?

We also started trying out various medications to help with his regulation issues. On the second try, we hit gold. The medication Aran is on now has changed both his life and ours. Literally. He is a different child. Actually, he’s exactly the same child – just at his best self, rather than his very worst. His teacher this year thinks he is a perfect angel. (This is the child who was once suspended in Prep.)

In January this year, after a few months of appointments and several rounds of paperwork, Aran finally received his diagnosis. Autistic Spectrum Disorder and ADHD. On paper, he scores as ASD Level 2, which is significant. 3 is non-verbal, while 1 is in the range of what was once called Aspergers. However, going by clinical observation rather than raw scores, Aran was placed at a 1. He is, after all, a very smart, high-functioning child.

I’m not the best mother in the world, by a long shot. But if I have one thing going for me, it’s that I’m stubborn. I love my kids fiercely and I will fight for them with everything I’ve got.

I might be down and feel like life is kicking me into the ground, but I will NOT give up. If something doesn’t work, I’ll try something else. If that doesn’t work, then it’s on to the next idea. I will read everything I can get my hands on to educate myself, and do everything in my power to help my son thrive.

Because at the heart of it all, no matter how hard this might be for our family, I know it is so much harder for Aran. He has to go through so much to conquer the simplest tasks of daily life. Things we take for granted present such a challenge for him: from tying his shoelaces, to controlling his emotions, to making friends – right down to simply feeling at home in his own body.

And yet, he has so many incredible gifts and abilities, as well.

Aran has a flair for words. (Rhyming words, in particular – ha!) He is polite and well-spoken. He is brilliant at maths. He has a wicked sense of humour…. something not always typical of autistic children. He is creative and he thinks outside the box. He’s becoming a fantastic little soccer player. He is fast. He has a great deal of empathy for others. If someone is crying because they don’t want to do a chore (unfortunately this is a regular occurrence in our home – #reality), Aran is the child who will offer to do their job for them. He has the sweetest heart.

He is our little mountain of strength. He has a mountain of adversity to climb in his life, it’s true, but I believe with all my heart, that’s what is going to make him stronger.

What do I wish other people would understand about autism?

It’s a neurological condition. An autistic person’s brain is wired differently. It’s not less-than, it’s just different. Some of the brightest minds in the world belong to people who are autistic. For other people, it is a severe handicap. That’s why autism is considered a spectrum.

Autism doesn’t define a child. It is something they have; it is not who they are. They also have such unique gifts and strengths to offer the world. They are fearfully and wonderfully made.

There is a big difference between naughty behaviour and autistic behaviour – even though they may look the same. An autistic child is not trying to be naughty. They might be overstimulated by sensory overload, or sensory seeking, or struggling with regulation, or acting out of intense anxiety. The brain-body connection is an overpowering force in the life of an autistic child. They may use “stimming” (repetitive self-stimulating behaviours) to calm themselves down, such as spinning, rocking, flapping, or vocalising.

The usual strategies won’t work. Yelling at or disciplining an autistic child for displaying autistic behaviours is counterproductive and only increases their anxiety, which will probably cause the behaviours to get worse. What does work? Deep pressure is calming for many autistic kids. A tight bear hug. A weighted vest or blanket. Somewhere to get away from sensory input in a chill-out zone. Rocking and swinging is very soothing, too – we have a stretchy hammock-swing at home for this.

An autistic child wants to do well, just like any other kid. When they struggle, they are not doing it to make anyone else’s life difficult. They often feel “yucky” and embarrassed by their own behaviours. They worry intensely about what other children may think of them. I’ve learned to approach unacceptable behaviours with curiosity. How are you feeling? Are you worried about anything? What does your body need right now to help you feel calm?

Autistic children do have empathy. They often struggle socially, because they find it hard to “read” social cues such as facial expressions, non-verbal cues and body language. In a conversation, they may appear to lack empathy, because they may not pick up the subtext of what you are feeling. But they are capable of caring very deeply for others. The flipside of this is someone who can show superficial empathy, but lacks deep empathy. For example, a politician may be adept at working a room, and know exactly how to charm people and win them over; but at the same time have no qualms about exploiting the vulnerable to achieve self-centred goals. I know which sort of person I would rather be.

 

I couldn’t be more proud of our beautiful little boy.

His autism diagnosis hasn’t changed a single thing about who he is. All it’s done is help us understand him better and access greater support to help him thrive.

Autism is a different way of looking at the world. It’s a wearying challenge at times, I will not lie, but it can also be an incredible strength, an asset, and a blessing.

That’s why I thank God for all of it – the good and the bad, the ugly and the beautiful. Because he sure knew what he was doing when he gave us this kid.

 

Bless you, autism mamas. Your child is so intricately and perfectly made.

Made for a purpose. And so are you. You may not feel like you’re always up for the task, but you too are stronger than you know.

“‘For I know the plans I have for you,’ declares the LORD, ‘plans to prosper you and not to harm you, plans to give you a hope and a future.'” Jeremiah 29:11

And for those reading this who don’t have an autistic child of your own, chances are you know one.

I hope this will help you understand autism a little more, and grow your compassion for the ones you meet who may be just a little bit out of step with the rest of the world.

They’re just dancing to their own song. And when you stop to really listen… you may just find that the music is beautiful.