This much, I know: Autism, motherhood & me

Rebecca Thomas - 8 Feb 18

When you become the parent of a child with additional needs, no one hands you a training manual. No one checks you are clear on the instructions for handling. It’s very much a case of learning on the job.

Before our son was diagnosed with a rare chromosome disorder at the age of 2, and later aged 4, as autistic, I am ashamed to admit I had little knowledge of either-in fact I’d never heard of a rare chromosome disorder, and my knowledge of autism stretched little beyond Dustin Hoffman’s Rain Man (side note: please try not to compare an autistic person to Rain Man. They’re not all good at maths-although that said, our son does seem to have a passion for numbers that definitely can’t be attributed to me).

So when we were first given his diagnosis I did feel catapulted into a whole new world- one that was unknown and frankly, a bit terrifying, all while processing the news that slightly throws life as you know it completely off kilter. And initially it did lead to a sort of bereavement on my part; the mourning of a childhood- and a life, that I had envisaged for my son.

If you are lucky enough to become a parent, and then for that child to be healthy, all you want is for them is to have everything you’ve had in life- and then some; the same highs and lows, experiences and memories. The stuff that has filled your photo albums and become family folklore, that has shaped the person you’ve become. When your child is diagnosed as having special needs there comes the knowledge that they will most likely have a very different life to that which you imagined for them. That they will face challenges that you have never had to. And although while my son is young I can try and protect him from that to a certain degree, I won’t always be around and that won’t always be the case.

Fast forward a couple of years to the present day, and I’m not going to pretend I find it easy. A lot of the time, I really don’t. There is a saying that gets circulated on social media, and particularly within support groups for special needs families, that goes you only get dealt what you’re strong enough to handle. But I don’t agree. I don’t think I am any better or worse equipped to care for a child with additional needs than the next person. While I know how lucky I am to be a mum, my years as a parent have in many ways been the most challenging of my life. They have tested me to my very limits, drained me emotionally and physically and revealed sides of myself that I am not so fond of (I always thought that I would be that calm, patient, almost zen-like mum. Turns out, not so much). I have never been more tired and never worked so hard at something, often without feeling I am making any progress.

But would I like to wish away my son’s autism? Absolutely not. And I can say that without hesitation now, whereas even a year ago, I’m not sure I would have. When he was first diagnosed a wise friend reminded me the label of ‘autism’ didn’t make him any different to the child he was the day before. And she was right. I don’t want my son to be defined by his autism, but similarly I never want him to be ashamed of it. It’s not an illness, it’s part of him- and many of the things I love most about him and am most proud of are qualities that he probably has just because he is on the spectrum . If he wasn’t autistic would he still be able to bombard strangers with facts about asteroids in the Post Office queue, or remember what day of the week his birthday fell on two years ago? Would he still laugh until he was almost sick when his Dad stages a bath time puppet show, or love a cheesy ’80’s kitchen disco? I don’t know where the autism begins and ends, but I’d hate to lose any of the things that make him, him.

Without wishing to sound like I have reached the finals of The X Factor, being his mum has been a ‘journey’ that has also helped shape me. I’m definitely not a perfect mum, and on some days not even a particularly good one, but I have become more open and tolerant. More socially and politically aware as I see the direct effects of funding cuts to vital public services, education and health care in my local area on my son and our family. I’ve gone from someone who had given little thought to how life for people with additional needs and their families can be different, to one who is trying to find out as much as I can about my son’s conditions and how I can best support him. From someone who would actively avoid confrontation of any kind to someone who has had to force themselves to be his voice, to fight for him every step of the way. And while I won’t claim to be anywhere near an expert on either autism or rare genetic disorders, I am trying my damnedest to be an expert on my son.

And so no, I wouldn’t take his autism away. But I would like to see the world become a more accepting, easier place for him to grow up and thrive in. No one person on the autistic spectrum is the same, but they do all process the world differently. And so for my son much of what goes on around him can be bewildering and stressful, set up as it is for us neurotypicals.

By making society more inclusive we would ALL benefit. I want my children to grow up knowing that not everyone is just like them, and to recognise that that is a really, really good thing. To know that everyone has something to contribute, everyone has something they can teach you, everyone has something that makes them special-regardless of how they look, or their abilities. Just think of all that fantastic potential we could unlock if we changed some attitudes, and adapted some things so they don’t just suit the norm!

But I don’t want to end on a negative. Because I think I am past that now, and as my son continues to learn and thrive at school alongside all his peers, I acknowledge more and more how much I am learning, everyday.

And it’s thanks to him. My boy, my precious boy. What has he taught me? Way too long a list.

But let’s just say what I don’t now know about dwarf planets, isn’t worth knowing.

Rebecca Thomas

Seaside dweller, coffee drinker, obsessive list maker, book lover and mama of 2.

View profile for posts, events and more info