Living against the grain in a neurotypical society
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 is unique — that flows against the grain.
My son has special educational needs and disability (SEND) and has recently received an ASD diagnosis. He is five-years-old. Last year, he started school — and based on the fight we’ve had to put up as a family thus far, this is was daunting prospect, to say the least. Fortunately, his school has been great, and we had the right provisions in place. But, for many, this isn’t always the case.
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.
The problem is that most people don’t understand this fundamental concept — they refuse to see it. A hidden disability is easy to ignore or overlook which, in turn, becomes a major roadblock in any kind of societal evolution. People 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, autistic 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.
Just because they don’t necessarily 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.
Here’s a glimpse into the highs, lows, peaks, troughs, challenges, and triumphs of a SEND parent.
On getting by…
First, we hear from my wife, Lynsey (and founder of The Send Life), on what it’s like getting by in a day to day context.
“There doesn’t seem to be a day that goes by at the moment that I’m not advocating somehow 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 contacting 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…
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 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…
Being a SEND parent can be an isolating experience. But, the power of community can get you though 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.”
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 endless milestones a challenge, you could bet everything you own that the neurodiverse find it even tougher.
Now we’re going to delve into navigating the peaks and troughs of neurodivergent adulthood through the eyes of those that live it.
On identity & perception…
Autism advocate and writer Catina Burkett discusses the flaws of the neurotypical outlook as well as the inherent challenges of being black and autistic.
“The ugly truth is non-autistic people lie, cheat, steal, kill, and manipulate. Non-autistic people live in a constant state of dissonance unlike those of us on the spectrum who live free of such emotional bondage, aka, ‘not the real world’.
Autistic people aren’t perfect, but we’re not in danger of being exploited by other autistic people. One of the hardest things non-autistic people can do is to look at themselves through our eyes. I’m sure they won’t like what they see.
As a black woman living in the United States, I am always mindful of what others think about me, and the assumptions they may make. As a black woman with autism, I am especially aware that colleagues often see me as an ‘angry black woman,’ even though my thoughts and behaviours are the opposite of this stereotype. (I prefer to label my ethnicity as black, not African American because not all black people are African, and the majority are not American).
Such cultural stereotypes make it particularly dangerous to be autistic while black. And, part of the reason people are quick to stereotype me is that there is no research on middle-aged black women with autism.”
On professional navigation…
When you’re operating in a world that isn’t set up for you, roadblocks frequently present themselves as freelance journalist Lydia Wilkins explains.
“Initially, freelancing was a means to an end for me. Job interviews, or ‘getting the foot in the door’ is difficult — and despite the stipulations in The Equality Act, barriers are often present and can stop me working. To be a freelancer, I have to be organised. I manage, teaching webinars about Autism; running my blog, which ‘broke even’ for the first time last year; filing copy to deadlines; and my newsletter — which is a small weekly venture, and I’m able to commission illustrators and writers.
For this to work, I need to be organised. But I have challenges — such as executive dysfunction. Prior to Covid-19, I also travelled around a lot — I visited the States the week prior to lockdown! I am often in London. Travel can be difficult. I am hypersensitive but unable to filter noise.
Communication is something I find incredibly difficult. Ironic for someone who basically works in a communication-based industry, no? It can be hard. You wake up daily, knowing you will fundamentally not be understood, and are liable to be misinterpreted. I have strategies for a host of scenarios.
It takes me a while to get to know someone — and I’d usually not reveal a lot about myself. However, I find it can make a difference to be upfront about a diagnosis. If anything, it’s a conversation topic.
Phone calls are a bit of a slog. I cannot interpret, as I haven’t got a facial clue as to what the other participant is thinking. I also dislike phone interviews for this reason! But writing and planning the conversation can work wonders — and you can work the social conventions into this. A friend of mine was very shocked to find out I do this! Even for him. Emails are easier.
If I don’t understand — language can be odd to interpret — I will say, please can you rephrase the question. Most people understand this. Some do not — I get the question repeated, verbatim, but with a tone suggesting I am a child or hard of hearing.
If I travel, disclosure cards work wonders. The Sunflower Lanyard Scheme ensured I was treated like a queen on the way to JFK airport. That was the best flight I have ever been on — and I was treated like a human being, the flight crew checked in on me often, and were chatting away.”
On the workplace…
Exchanges lost in translation and difficulties ‘fitting in’ are just two of the issues autistic people face in the workplace as content specialist Mark Palmer touches on.
“I have worked in an office environment for 30 years and being autistic has been a double-edged sword throughout.
I struggle with interpersonal skills, so meetings are difficult, and I have been admonished for looking bored (I was!) and not contributing. Being different became a major issue when a new staff reporting system required managers to mark 10% of their staff as requiring improvement.
Those of us who were different became easy targets, and I came close to being ‘managed out’ because of my autistic behaviours despite my work being more than fine. This situation did, however, lead to my employer arranging for my formal diagnosis of autism.
I have always been known as an innovator and problem solver. I see things differently and find new and creative approaches. I am tenacious and will not let things go until they are properly resolved which my managers appreciate, at least when I am pursuing a change that they support! And despite common beliefs about autistic people, I am very empathetic to my colleagues and known as being supportive.
I am now committed to improving the workplace experience for autistic people. In exchange for a few minor adjustments in how we work, we have so much to give in terms of creativity, focus and insight that is needed now more than ever.”
On growing up…
Circling back to the all-important transition into adulthood, author and aspiring pastry chef Jeremiah Josey’s drive, ambition, and selfless outlook is nothing short of inspirational.
“My experience with reaching adulthood has been great! I am learning a lot about myself, especially during Covid-19, considering what is going on in the world, and trying to find and use my voice to make a difference. After seeing what happened to George Floyd, rather than be angry, I teamed up with my mom to write another book titled ‘Here’s What I Want You To Know’, which addresses my feelings of police brutality, racism, and equality. I believe that together we can make a difference.
My passion for baking stems from the fact that I started out baking with my grandma, and my mother found ways for me to cultivate my gift. She reached out to Chef Kwame who appeared on season 13 of ‘Top Chef’ to ask whether he would work with me — and the rest is history!
I have worked with several amazing chefs and have travelled the world, sharing my message of hope, or as my mom would say…being a light in a dark place. The world can be dark, yet I remain diligent in aspiring hope.
My passion for baking is not for me only. I hope that my journey inspires people to surround themselves with those who love them so that their gifts can be cultivated too.”
On being a parent…
Many autistic adults go on to become loving, nurturing parents. Have you ever wondered what life might be like for an autistic parent? Well, Gareth — Autistic Dad Life — is going to give you a glimpse.
“Change! Change is never good for anyone but when you’re living with autism and in fact, any ASD diagnosis, the change can hit worse than you think.
The thing that hit me mainly was the fact that I couldn’t just focus on me all the time. Now there was this tiny being who relied on me, and there’s me thinking, ‘Hey, this will be a walk in the park’. Oh what an idiot I was!
I’m not ashamed to say I struggled to cope, my equilibrium had been shifted. I couldn’t be the person to shut everyone out that I spent 26 years being. I HAD to learn to let people in and unfortunately — this realisation came a bit late. It came after I had a complete meltdown. From there it’s been an uphill struggle, worrying if I’ll break again.
From there though I learned to talk. All the worries I had, all the problems I faced regarding raising a son, I had to talk to my wife about them otherwise I’d crumble.
Every moment has been a learning point, just as my son is learning about me I am learning about him. However, with my autism, I feel I view it in a different way. I see him develop and grow into someone that for so long I wished I could be, but now I know that’s not my path. My path is to raise him to be aware of any disability out there, to raise him to be better than those who came before who just labelled people as ‘naughty’ without a diagnosis.
From what I’ve been through I know that any form of neurodiversity is not to be shunned at or put into the corner, but to be embraced and celebrated.
It’s an ability, not a disability — and it can create some of the most positive, wonderful things this world will ever know.”
“The most interesting people you’ll find are ones that don’t fit into your average cardboard box. They’ll make what they need; they’ll make their own boxes.” — Dr. Temple Grandin
Different, not less. People that think or experience the world differently have endless value to offer this world — if only we allow them to thrive, to participate, to be.
If we accept people for who they are and what they have to offer rather than how they fit into the neurotypical construct of society, we will benefit so much. Focus on the strengths, not the deficits — it’s the least any of us can do.
I hope this journey has offered some insight — some food for thought. I’d also like to say a massive thank you to everyone that has shared their thoughts and insights here — you’re the best.
All of the proceeds of this article will go to the wonderful As1 and the National Autistic Society. Check out what these essential charities do — and if you’re feeling generous, donate.
Oh, and in the words of many, neurodiversity is…