Autism...the diagnosis journey

I think I knew from very early on that Zach was a little bit different. He was a baby that never really thrived, he had a fair few health complications and he pretty much cried ALL THE TIME.

Zach was born as a healthy 8lb 3oz baby. He was perfect in every way…except for his absolutely gigantic off the scale head, a head so large I required 25 stitches in my ‘noo noo’ after pushing it out. Zach came home from hospital the next day and me and Kev started our journey into parenthood. Zach was a miserable baby, he cried a lot of the time and only really stop if you lifted him up and down vertically at speed (I had biceps of steel in those days!).

Zach was an incredibly sicky baby, lots of reflux and colic and he struggled to put on and maintain his weight. We had a lot of visits from the health workers in those early days to try and support us at home.

Zach also struggled with some respiratory issues. He frequently went blue or struggled with his breathing and we spent many a night rushing to hospital with him. It took a long few years before Zach was diagnosed with a birth defect with his air way that eventually he did grow out of.

As Zach became a toddler, he was a poor sleeper, a poor eater and he was a challenge. Don’t get me wrong, we had so much enjoyment from Zach. He was bright as a button and loved trains and Mr Tumble. But Zach was also a cross and angry little boy. He would smack and hit me and I leaned a lot on my family and friends for support in those early days.

As Zach reached school age, it was becoming a little bit more noticeable that perhaps there was something more going on than a boy who just had temper tantrums. Zach was a challenge at school, I always worried he would be perceived as a ‘naughty boy’ but the school loved Zach and his teachers, although found him challenging, also warmed to his funny and endearing personality.

I was always that mum though….the mum who stood in the playground knowing the teacher was likely going to come over to speak to me about an incident that had occurred that day.

One particular occasion I remember, I was stood in the playground amongst the other parents and as children started to filter out at home time, I could hear comments as they reached their parents…”Mummy, guess what Zach did today” “Mummy, we saw Zachary’s willy today”….

And sure enough I see the teacher beckoning me over. “Mrs Gardner, I’m afraid we had an incident today where Zach wee’d in the art sink”…..honestly, if the ground could have swallowed me up at that exact moment I would have been SO grateful!

As Zach progressed through year one and into year two he had a fantastic teacher who seemed to understand Zach and all his little quirks. However she was the first teacher who actually approached me and suggested we considered referring Zach to the school SENCO for a bit more support. The school SENCO was a wonderful lady with a depth of knowledge and experience. After a few observations, it was decided that Zach would be referred to the local child development centre for assessment.

Like many other children, we then fell into the system. It took us years to reach a diagnosis for Zach. It took two years to get seen for an initial appointment and to have the first subsequent tests and assessments. Then covid hit and everything ground to a halt.

As Zach was getting older, it was becoming more apparent that he was on the autistic spectrum. As social and academic pressures grew, Zach seemed to unravel. He would try to hold it together at school but would then come home and have huge explosive breakdowns. He was sometimes aggressive and violent towards me and his sisters. I reached out to the school and to the GP but for those couple of years during covid I felt very alone. I found that autism burn outs weren’t very understood by a lot of people, Zach would be sullen, quiet and miserable and would hide in his room but then the slightest thing would set him off. He would say the hardest things to listen to and he would throw things, slam doors, smash things and break things. I knew I needed help access to support was incredibly limited during covid. These were possibly the hardest years of my life.

As Zach reached year six and we were finally heading away from covid and lockdowns, the school SENCO was her usual incredible self and chased the child development centre to try and get Zach a diagnosis before he started secondary school. It was becoming increasingly apparent how vulnerable Zach was, particularly to peer suggestion. Zach was and still is, so easily led. He has a limited understanding of danger and consequence. I remember one occasion where a parent came to me and told me she had had to intervene at the park when Zach’s friends got him to repeatedly poke a wasps nest with a stick. Zach had absolutely no idea how dangerous this was.

The SENCO’s nagging worked wonders, we were pushed through the system pretty quickly at this point and after a second ADOS assessment and a couple of assessments with the Educational Psychologist, Zach was finally diagnosed as being on the autistic spectrum.

All in all it took us four years to get his diagnosis.