Parenting an autistic child

It was a rainy Monday morning in January. I remember because my husband had gone to work and I was left dealing with the huge pangs of disappointment that the weather was holding us hostage in our own home. But, I wasn't disappointed because we were being deprived of a morning of family fun. Oh no. I was disappointed (actually I was nervous) because kiddo and days spent at home did not mix. I had no idea why.

It was a few weeks past his 1st birthday. I watched on as he head-butted the rubber tiles in his playroom, thankful that he had chosen these over the wooden floor. He was distressed. In emotional agony. I knew this but, for some reason, the rest of the world was trying to convince me otherwise. That somehow it was my perception of his behaviour that was wrong.

"He's just hit the terrible twos early."

"That passion will stand him in such good stead in the future!"

With these sentences playing on repeat in my mind, I carried on watching, keeping him safe, as he descended into a full-on meltdown. He was in a place where I could not reach him.

Normally the fresh air helped in these situations. But today nature had planned against me. The whole day seemed to stretch out in front of me like a never-ending treadmill. Exhausting and getting nowhere. But of course, the evening did come, and the next day was born. From that day onwards, I could no longer deny that things were not right with our beautiful, funny, passionate son.

I started to read up on autism. I was familiar with it from experiences in my working life. I read checklist after checklist of symptoms. Every time he ticked all the boxes without fail. Some things I knew of already, such as the head banging and delayed language. Others were completely new to me - a high pain threshold, refusal to try foods, etc. I was like a sponge taking in every minute detail about autism. It had already started to invade my life whether I liked it or not, and I wanted to know what I was up against.

A year passed by and nothing improved. In fact, it became worse. Amplified if you like.

So, being the dutiful mother I was, I rang the health visitor. They tried to put my mind at rest in a beautifully condescending way: "Are you having a bit of trouble?". "Just a tad" I replied, playing down the screaming voice inside me which wanted to shout "HELP ME!" at the top of its lungs. There was only one thing I could do - let these people see for themselves exactly what I was dealing with. So, off to the hospital we went. With its bright lights, echoey corridors and strange smells I had no doubt that it would swallow my beautiful child in a torrent of fear, and that he would act the only way he knew how. 

By the time the health visitor came to see us kiddo was already violently smashing his head on a glass fire exit door. When approached by her he simply attacked, such panic in his eyes. She looked at me stunned. Not because of the behaviour witnessed, but simply in awe of how we had come this far with no help.  

It was at that moment I realised my gut feeling was right. Those voices that used to swirl around my brain, those voices convincing me his behaviour was just boisterous, they were wrong. So very wrong. From that day on, I promised myself I would have more faith in me; a belief in my own thoughts and feelings.

And it's a good job too, because I was about to be thrown into a fiery pit of appointments, assessments and interviews. My life was about to be put under a spotlight in a way I could never imagine. Every professional would have an opinion. An opinion on diet, behaviour, education, sleep, my parenting skills. Every aspect of my life was to be put under a magnifying glass.  

The following year was tough. In fact, it wasn't just tough, it was the hardest time of my entire life.

Bearing in mind I had a two-year period of severe depression in my life, and watched my mum fight and die from cancer, I think that puts it in perspective.

After our first few appointments, I had a huge realisation: I needed to fight. Everything my child would get in support and education was going to be down to my own sheer determination. So I went for it. I gave up my childminding business and dedicated a year of my life to making sure my son had a shot at his. A chance to live a fulfilled life, in the right environment for him.

That year has now passed and I won't lie, I'm exhausted. But, looking back, there are two things that totally saved me:

1. Self-care and counselling.

Finding the time to talk and make sense of everything that was happening to me and my family was essential to my success. It may seem like you just don't have the time to fit it in, but believe me, it saved my life. It kept me going through what seemed like an endless - and at some times, pointless - struggle.

2. I remembered I was more than just a mum.

I was a wife as well. My husband was there for me, I'm one of the lucky ones. I was a friend as well as a fighter. Without my friends in similar circumstances, I don't think I could have made it through. I remembered I was me. Occasionally (and not as often as I should), I put my emails away, and the books of the SEN education system down, and got my paints out. I took up cross-stitch, such a mindful and yet simple activity.

Nearly three years into our autism journey, we are about to embark on a whole new chapter. Kiddo starts SEN school in two weeks. I can hand on heart say that the agonising fight was worth it. But I can also say it was the hardest thing I have ever had to do. So if you are embarking, or are very much in, this twisted rollercoaster of a journey, remember to look after yourself.

This is a tough life you lead, one that perhaps others not in your situation can understand. Surround yourself with understanding people, people who have got your back. And above all, remember to enjoy your child. Autism is tough, relentless and also beautiful. But hear me when I say, your fight will be worth it. I now feel the happiest I have for years. It's a new dawn in our house. Keeping going, you will get there.

Read more of Danielle’s story on her blog, The Autism Diaries.

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