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Living Against the Grain in a Neurotypical Society

A collective of autistic voices

What it really means to be ‘wired differently’. An insight into the world of neurodiversity. 

 

Have you ever considered what it would be like to live in a world that doesn’t tolerate the way your brain works? A culture that, in many ways, is volatile to anyone wired to think, feel or behave in a way that’s unique—that flows against the grain.

In the autism community, this is a familiar concept. A hidden disability is easy to ignore or overlook which, in turn, becomes a major roadblock in any kind of societal evolution. People often refuse to tolerate those that are different and it’s a bitter pill to swallow.

Rather than being neatly swept under the carpet, neurodiversity is something we should talk more about. And, with the help of some wonderful voices, that’s exactly what I’m about to do.

From young SEND parenting to neurodiverse adulthood, parenthood, and beyond, here we will embark on a journey into what for many of you will be the unknown—starting at life’s beginnings and those who guide their children with gritty courage, through the unknown, day after day.

SEND parenting 

Just because disabilities don’t always manifest themselves physically or aesthetically, it doesn’t mean they don’t exist. Hidden disabilities are real—and so is guiding a child with SEND through everyday life, fighting for both present and future with the dawning of every new day.

I know about this struggle first-hand. My son has special educational needs and disability (SEND) and has recently received an ASD diagnosis. He is four-years-old. Soon he will start school, and based on the fight we’ve had as a family so far, this is a daunting prospect.

Every tiny milestone is a battle valiantly fought; each small step is a giant leap in Sidney’s personal progress.

So far, my wife Lynsey and I have worked tooth and nail to support Sidney while learning as much as we can—and let me stress this: we are not trying to change our son, we’re merely trying to help him get the best from his life, on his terms. We want to nurture his passions and empower him to thrive in a society that, in many ways, refuses to move to the beat of his drum.

On getting by…

Image: Lynsey Hughes

Lynsey, who founded The Send Life, said:

“There doesn’t seem to be a day goes by at the moment that I’m not advocating for Sidney. In the morning around my day job, I could be firing off emails to local charities to see what support they offer or emailing his school to let them know some further information about Sid that might help.

To date, Sidney has had an adventurous life and we’ve taken him to many places, but now I’m always thinking about how we can make it more comfortable for him. Recently, I got Sidney an Access Card which will help with things like queuing or toilet access when we are at tourist spots. I’m also using PECS cards much more, so I could be spending my lunch break laminating pictures of people and places familiar to Sid to prepare him for the next day. I’ve quickly learnt that it’s down to Dan and me to keep seeking knowledge and support. It’s not going to just land at our feet. 

It’s exhausting at times, having to think of everything to make life better for Sid, but he didn’t ask to be wired differently—and I’m going to make damn sure he lives the best life he can.”

On being a guide…

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Image: Lloyd Walton, @senddad

Next up—SEND Dad, Lloyd, on his experiences of being a guide to his children and navigating them through their challenges with truth, patience, and positivity.

“My view is that having children is such a huge commitment. Really it’s a sacrifice of your old life for many, many years. It’s also a gamble, as you don’t know if your children may need additional help, more than the average neurotypical child.

“When the reality hit me that I had a one-year-old, three, and a four-year-old, all with a very rare genetic chromosome disorder and two children with a lot of additional needs, I felt like my old life had been wiped out and I had embarked on a new, much more challenging one.

“You can mourn the life you once had and the hobbies as well as the free time that came with it, but you mustn’t let that mourning period go on forever.

“Eventually, I realised it’s time to accept the new life, engage, and commit to every challenge, head-on.

“Only then did I realise how rewarding it is being a parent and how lucky I really am to have my three amazing children, no matter how challenging they may be. They are interesting, and unpredictable, and also completely hilarious. I have the best laughs with them. And more than that they are a part of me and my wife.

“As a SEND parent, you have to find new,  inventive ways to communicate with and educate your child—you have to constantly think outside the box. To be prepared to try different techniques over and over and constantly be disappointed. The main thing is that it’s just as frustrating for them as it is for you, and then some.

“I dedicate all of my time to assisting my children no matter what. If I can bring them up well and make them as independent as possible, then I can start to creep back into my life my hobbies, social activities and the things that I like to do.

“What I have come to realise is, the older they get the easier things get, and the more you appreciate the time and effort spent making them happy and independent. The secret reward is that actually they have helped me and made me into a much mentally stronger, smarter, and resilient member of society with knowledge of the SEND community that really everyone should have. Through my SEND_Dad account, hopefully, I can spread awareness.” 

On isolation & community…

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Image: Charlotte Pearson

Being a SEND parent can be an isolating experience, perpetually so. But, the power of community can get you through as Charlotte, SEND parenting advocate and co-founder of the wonderful charity, As1 explains.

“Being a parent is the hardest job in the world. So when you factor in the additional needs of a SEND child, it’s a whole different experience. And, one that only another SEND parent will truly understand.

“It’s usually very lonely because not even your best friends or closest family can relate.

“I myself have ADHD and both of my children have autism, but with totally different needs. This dynamic means we face a lot of challenges. Sleepless nights, constantly adapting, dirty or concerning looks in public, meltdowns, delays in development, stigmas, ignorance, and a lack of understanding from others as well as self-blame, disappointment and a never-ending list of medical appointments filled with confusing jargon as well as overwhelming information.

“These are just a few examples from an endless list of challenges that many of us face, all while mourning the child you “expected” to have, and wondering what their future holds.

“I recently set up an Instagram page where I share our story and information from my experiences not only as a special needs mum but from my work supporting families through my charity.

“I’ve been so overwhelmed by the amazing community of SEND families out there who’ve helped to support me just as much as I wanted to support them.

“It was a few years ago that I realised how important it was to connect with likeminded parents and carers. So, myself and another SEND mum set up a parent-led support network which is now a registered charity—As1.

“We have thousands of members all over the world who we support online. And, for those able to attend, we have monthly coffee mornings, parent nights, and family fun days.

“We’ve worked closely with local organisations including CAMHs, SENDIAGS, and local councillors while going into schools to help set up similar systems that have worked so well for the families we support. Our members refer to As1 as a family. We’ve laughed and cried together, supported each other through some very tough times, and for many—we are the only support they have.

“I’m amazed at how many parents there are out there like me. There is something very special and comforting when connecting with others who truly get it.”

Neurodivergent adulthood

Did you know? There are at least 700,000 autistic people in the UK. Many of these people are adults.

As we all know, life can be hectic, demanding, and confusing at the best of times. When we transition to adulthood, the world becomes a very different place.

If neurotypical people find the many facets of everyday existence or life’s many milestones a challenge, you could bet everything you own, that the neurodiverse find it even tougher, to say the least.

Now we’re going to delve navigating the peaks and troughs neurodivergent adulthood through the eyes of those that live it.

On identity & perception…