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Living with autism

Posted by Leigh Rose on

Today is April 1st, it marks the start of autism awareness month. A month where everybody talks about autism, shares inspiring stories of people who have overcome the odds to do amazing things, and "lights it up blue" (I'll talk about that in another blog later). 

But what is it like when your living with autism? 

What does it mean to "live with autism"? 

Many use it to mean that they have an autistic child, and personally I'm ok with that.

But many in the autistic community feel it's wrong. For them "living with autism" should mean that you are autistic yourself. 

Here's the thing, I may not have a diagnosis but I'm 99% certain that I am autistic. Yup that's right, at the age of 31 I started to research autistic traits and strategies because my youngest child was diagnosed autistic (he was 3 years old at the time), the more I learned the more I realised that both myself and my teenage daughter had these traits, she is now seeking a diagnosis, I have decided not to.

Why am I not looking for a diagnosis? It's simple, I'm 35 years old, I've struggled with certain things all my life but at this stage I have found my own coping strategies, there are no interventions that will change my life, there's no practical support to help me and if I'm honest in the back of my mind I'm probably worried that a diagnosis would be used against me as an excuse to question my parenting ability and the choices I make for my family. 

With that said I do feel that a diagnosis is important, especially for children so that they can be supported and hopefully have help to live their life as independently as possible to its fullest.

So back to the title of this blog, what is it like living with autism? 

I can only speak from my own experience, and I can sum it up in one word. Hard.

For me it's hard to live with autism, I struggle with audio input, while I was at school this made it really hard to concentrate, I love to learn, and as a child I devoured books, I adored Shakespeare, I could subconsciously "translate" his works into modern English which meant I had no issues understanding them. And yet I recived a D grade in my GCSE English, because the school environment was too distracting, too much noise, too many lights, even under exam conditions all I could focus on was the scratching of pencils and the scraping of chair legs against the wooden floor. If it hadn't been for my coursework which I'd completed at home I would of failed.

This has continued to cause issues for me into adult life too, if there's a tv programme on in the background while I'm working I end up writing out the words I hear, it's one of the reasons we all were headphones in this house, I can't concentrate on something unless it's quiet around me, even trying to clean while one of the kids is talking is a nightmare, I have to give each thing my full attention or it doesn't get done. The only exception to this is music, if I have my music on it actually helps me to concentrate, I have no idea why, and maybe one day I'll learn the reason for this, but for now it just works. 

I struggle with social situations, I'm an introvert, if I'm honest I'm one of the few people who is actually enjoying this lock down we are in atm! Everybody keeping 2 meters apart, the shops restricting the number of people allowed in at a time, not only being allowed to stay at home unless necessary but being TOLD to, this is utopia for me. 

For many years I masked, mimicking those around me, pretending to be somebody I wasn't and I can tell you now it is physically and mentally exhausting! It lead to me being treated for depression.

I'm a "picky eater"  certain smells and textures make me gag,  if there's an ingredient in something that I know I don't like, I don't like the way a food looks or smells then I can't even force myself to try it, even the though of trying it makes me feel physically ill. This means I have a restricted diet, not as extreme as some, or even my own children, but it's not great.

I struggle with emotions, I have 3 settings, super happy and excited, nothing and rage. Most of the time I don't really feel much of anything, this has caused issues in social and personal relationships, the only exception was the days my children were born, I can't describe how I felt when I held them for the first time but I'm sure mothers the world over know exactly what that is,  it wasn't my normal ott happiness it was something all of its own, I occasionally get a wave of that when I look at them or hug them it's my favourite emotion. But my children aside, in day to day life I don't really feel emotion unless it's one extreme or the other, it's only recently that I realised that this is not "normal" I always thought that it was this way for everybody. 

I'm impulsive, I get an idea in my head and I go all out to achieve it, this has landed me in some tricky situations in the past but it always worked itself out in the end, although sometimes it is expensive. I'm now more aware of my impulsive ways but it still doesn't stop me from doing things that others would call crazy, for e.g. yesterday I committed to buying a puppy to be my son's new assistance dog, I had said that we wouldn't even be looking at a new puppy until next year, that we would cope until then and save up the money in advance. But then a litter was born to a beautiful cocker spaniel that I've met sevral times and there was 1 dog in the litter that my son fell in love with from one photo, so now we've paid a deposit and I have 2 months to save the money to pay for him, at a time where I don't know if/when I'll be gaining a steady income from my business and the world is in a state of panic and has practically ground to a halt. But judging from his position in that 1 photo he's going to be a perfect match for my son lol

So yeah, living with autism is hard, and my traits are more manageable than those of other autistic people, obviously, because I was able to live independently from the age of 16-35 with no support and nobody realising that I have these struggles, so if its hard for me you can only imagine what its like for others.

But that's the thing about autism, no 2 autistics are the same, but just because 1 person struggles more with a certain thing than another doesn't mean that they have no chance in life, the person who struggles less is still autistic, and that's the message that I hope gets promoted this April, not just autism awareness but AUTISTIC ACCEPTANCE not just for the non verbal autistic 5 year old who can play Mozart without a single lesson, but also for the autistic adults who fight every day against their own struggles just to try and live life.