How it Feels to Parent an Autistic Child from Diagnosis to Adulthood

I have four sons, one of them happens to be autistic. Just like one of them happens to be super tall, another is ridiculously long sighted and the other is so laid back he’s practically horizontal. For me, how it feels to parent an autistic child from diagnosis to adulthood is actually no different to my neuro typical sons. The problem is that sometimes it feels drastically different.

Becoming Mum

When my son was born 18 years ago, and I held him in my arms I felt like I had won the lottery. It didn’t matter, that I was 18, that I had a limited income, a shaky relationship and that there was going to be a long hard slog ahead of me. I had this little bundle of perfectness that gave my life a sense of meaning and purpose that I had never known before.

I’d had a difficult pregnancy and then a difficult labour and traumatic delivery, but it didn’t matter my little man had arrived, safe and warm in my arms. I was besotted.

The First Signs, Investigation and Diagnosis

He progressed as he should, first smile, rolling over, sitting up, walking… But by the time he was a year old it was obvious that his interest in the world around him was limited. He would sit with his toys around him, but never ventured far, he had no real curiosity about the world. It was if it didn’t actually exist.

As he got closer to two, the difference between him and his contemporaries, became even more apparent. He had no interest in speaking and continued to babble like a baby, the only discernible word was Mum. (Yay!!)

And so, the investigations began. The hospital trips, the observations, the-check ups, until finally it came. The diagnosis. Aged 2. Autism.

Despair. How do I ‘fix’ and ‘protect’?

It shouldn’t have mattered, but it did. All the hopes and dreams that I had for him didn’t totally disappear, I just despaired at the thought of how much harder life and all the things we take for granted was going to be for him. I knew that life was hard without added extras…

As a parent your urge is to ‘fix’ and ‘protect’ and I was fucking screwed. This was something I could neither ‘fix’ nor ‘protect’ him from. I’d failed at the first hurdle. It was a fucking hideous feeling of helplessness and loss. With a side helping of rage and fury.

Then came the helpful comments… ‘he was naughty’ it was ‘poor parenting’. Obviously due to the fact that I was a teen parent living in difficult circumstances. (I’d just had my second son who was born with fixed bi-lateral talipes – a whole other post!)

An Emotional Rollercoaster. (Warning! It gets a little bit sweary here!)

The shame, the outrage I felt was unbearable at times. But, with each little pearl of wisdom that another ill-educated troglodyte felt they had the God given right to impart to me (as if it was helpful?!) I realised that I did not give a flying fuck what anyone thought.

That moment of realisation was unforgettable! I was making my way home on the bus with both my son’s, after a long day at Uni. The baby was in the pram, both legs in plaster and I was wrestling with a tired inconsolable toddler, who was kicking off quite spectacularly because the seat we usually sat in was taken.

An incredibly helpful lady suggested quite loudly, that what my son needed ‘was a good slap to sort him out.’ She was somewhat shocked when I suggested that perhaps I should try it out on her first, to see if it stopped her making stupid comments and if it worked I’d try it on my son!

From that point on, I grew an even thicker skin and though ‘bollocks to the lot of them!’ It was a good philosophy.

Getting on With It.

My precious, perfect little boy was still my precious, perfect little boy. But to others he was flawed. His autism was something to be fixed. I disagreed. It was part of him, his personality, the essence of him. To change it, would be to change him and I didn’t want that. As far as I was concerned there was nothing to ‘fix’.

My job was merely to help him make sense of the world, to feel safe, and to give him as many experiences of the world as possible. So that is what I have attempted to do.

He’s been snorkelling in Mexico, he’s seen Motorhead live (and other amazing bands) at music festivals, he’s camped, climbed a mountain, been to every major museum in London, been to water parks, theme parks, video game expos, travelled by train, boat and plane…

His Autism has not prevented him from having these experiences because we’ve just gone for it and to hell with what everyone else thinks.

My son has been incredibly brave over the years as he has embraced each new challenge.

Disadvantages

My son has however always been at a disadvantage in terms of his education.

Schools are noisy chaotic and unpredictable places, hell on earth for someone with Autism trying to make sense of their world and learn at the same time!

As a result my son has spent the majority of his education trying to catch up with his peers, always a few years behind. It took him until Year 5 aged 9/10 to hit a NC level 1. To give you some kind of idea what that means… Most kids get to level 1 in year 1 when they are aged 5/6…

When he started year 5, he got a statement of special needs and full time support in the classroom. This is support that he has continued to have throughout the rest of his primary, secondary and 6^th form education. (although now it is called an EHC plan.)

This support has enabled him to fully access the curriculum and achieve qualifications we previously thought would be out of his reach… 8 GCSE’s grade C. Amazing for a child we didn’t think would see out his education in a mainstream school.

Adulthood

My son is 18 now, and last month we submitted his application for University. He has been made offers for every University he chose and he is on target to have 180 UCAS points by the end of this academic year. The best thing though, is that he needs just 112 for his chosen degree course. There aren’t enough words in the English Language to express how I feel right now.

My Advice (Feel Free to Disagree!)

So, that’s how it feels to parent an autistic child from diagnosis to adulthood, for me. From this experience, my advice to other parents with children who have Autism (or any other kind of disability or additional need) is please don’t let that label define or limit your child. Don’t listen to the people who tell you something isn’t possible. Find the solutions that work for your child, and your family. Listen to the advice, keep what works and discard the rest. Push your child out of their comfort zone, and always have high expectations of them. It’s the only way they will ever realise their true potential.

And certainly do not listen to those judgemental, negative twats. You know the ones I mean!