The truth about the challenges, frustrations and blessings of my life with an autistic son

exclusive | 5 min read

I remember the first time I told a stranger that our son, Eddie, was autistic. He was lying in a ball on the floor of the ladies loo with his hands clamped over his ears, shouting and screaming that the hand dryer was too loud. She was staring at him with a look of contempt.

When I told her he was autistic, there was a moment of relief and awkwardness as she nodded and said: ‘I’m sorry.’ Whether she was sorry that he was on the spectrum, or sorry for judging him I’m still not sure, but it helped diffuse the situation.

I’ve lost count of the number of times that I’ve had to apologise on Eddie’s behalf. I’ve apologised for him pushing in front of other children, for telling someone he doesn’t like the birthday present they bought him, for having a meltdown because the labels in his gloves are scratching him.

I’ve said sorry for him not saying hello to visitors, for not looking people in the eye, for the extreme reactions he has when anything unexpected happens.

All these things wouldn’t be that unusual for a toddler or pre-schooler but when your child is six or seven, it starts to become a problem.

But Eddie has no sign, no badge, no visible disability - he is judged purely on the fact he is not ‘neurotypical.’ He doesn’t behave like everyone else, or like his big brother Charlie or little sister Jemima.

Eddie is ‘neurodiverse.’ The term, for the uninitiated, encompasses anyone with Autism Spectrum Disorder (ASD), ADHD, dyslexia, dyspraxia, and a number of other developmental conditions.

Home comforts

What people don’t see is how Eddie starts dancing around the kitchen whenever one of his favourite songs comes on the radio, the way he kisses and cuddles our two cats, the elaborate care he takes to draw me a picture, and how he tips his head back and laughs with absolute abandon when he hears something funny. He is, generally, much better and calmer at home when he’s with just us than he is when we’re out in public.

In public, I’ve seen the looks from other mums as Eddie rushed past them at the school gates, shouting loudly after seven hours of having to contain himself, sit quietly and conform.

I’ve felt the judgement every time he’s not been invited to another child’s party, when he’s ‘stimming’ (a fidgeting movement people with autism are prone to) in the school assembly, and when he isn’t invited back for another play date.

Turning point

If you were to see me out with Jemima you might think I was a good mum. She will usually sit and colour quietly while we’re in a café. She will hold my hand and won’t run off. She doesn’t shout or push or draw attention to herself. People smile at us and tell us how alike we look.

The experience of parenting her, a neurotypical child, is completely different and, in many ways, much easier than parenting her brother.

Before we had Eddie, my only experience of autism was watching the 1988 Hollywood hit film Rainman, starring Dustin Hoffman as a man living with severe autism. I was pretty ignorant and believed that people with autism were mainly non-verbal or had some sort of innate mental superpower.

Having a child with special needs is like learning a whole new language and entering another world. At first, we were very resistant when we were advised to refer Eddie to the Child and Adolescent Mental Health Services (CAMHS) when he was at pre-school. I didn’t really believe in labels and found the term ‘special needs’ offensive and upsetting.

He had been a gentle toddler and much quieter than his brother, who is three years older. I’d tried not to compare them but I realised quite early on that Eddie was a little different. He wasn’t able to hold a pencil, engage with his peers or express himself as articulately.

But it wasn’t until Eddie started school that the real problems started. His behaviour deteriorated. He became tired and agitated and would sometimes lash out. He wore an eye patch in the first year which made concentrating even harder for him. He would have major meltdowns when he got home and was inconsolable at times.

Lack of support

The way the school handled this was, in my view, appalling. I had endless phone-calls and was summoned to numerous meetings. I was asked to come in each lunchtime as Eddie became overwhelmed and his school said that they didn’t have enough staff to sit with him in the classroom.

Eddie couldn’t cope with all the noise and commotion of the playground. He was left to his own devices and not offered any support. I often had to cancel work arrangements at very short notice to pick him up. After a year, we moved schools and the next school, the one to which he still goes, was much better equipped to meet his needs.

Finding childcare outside of school has been another issue. I found it particularly disappointing when the after-school club told me that they thought they could no longer ‘support’ Eddie for the two days a week he was there. They had no strategies in place to accommodate him and were reluctant to even try.

We have since found a brilliant childminder, which enables me to have a normal working day for two days a week and just about maintain my income.

We are still in the process of trying to get his Education, Health and Care (EHC) plan in place to get one-to-one support for him for five mornings a week at school. He is currently around two years behind the level where he should be and probably won’t be able to go to a mainstream secondary school. There is, because of government cuts to funding, a huge backlog and we are on a long list of people.

But when I think back to that time I first told a stranger Eddie was autistic, how I’d almost whispered it under my breath, I realise how far we’ve come. I am no longer ashamed to tell people who my son is. I am proud of everything he has achieved in the face of such adversity.

So next time you’re looking at someone whose child is having a meltdown, please try not to judge them or their parents because you don’t actually know what their circumstances are or the obstacles they may have had to overcome.

*For support and information, visit The Autism Research Institute

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