Neurodiversity: autism and me
When others understand and make accommodations for my condition, this makes it easier for me to feel included and valued
Last year, my colleague Stuart wrote a blog post Neurodiversity Celebration Week: ADHD and me. Continuing the discussion and celebration of neurodiversity, I’d like to share my experiences of living with autism, as well as talking more about neurodiversity in general.
What is neurodiversity?
Globally, an estimated 1 in 7 people experience some form of condition considered neurodivergent. This means we experience differences in our mental functions. Autistic sociologist Judy Singer first used the term neurodiversity in 1997. Such differences in mental function were often broadly considered a problem or abnormal back then. They’ve now become better understood and more broadly spoken about in the media, school, higher education and elsewhere.
Types of neurodivergence
Neurodivergence encompasses a wide range of conditions including:
- attention deficit hyperactivity disorder
- obsessive-compulsive disorder
- Down syndrome
For many people, these conditions may go undiagnosed for all, or for a large part, of their lives.
What is the autistic spectrum?
Autism is known as a ‘spectrum disorder’ because its cases range from mild to severe. The autistic spectrum is so broad and varied that many of us could identify with parts of it. Difficulties with social skills, repetitive behaviours, and speech difficulties are all commonly associated with autism. But I don’t personally associate with all of these traits.
Living with Autism Spectrum Disorder (ASD)
From a personal perspective, I’ve always been aware that my mind works a little differently to what’s considered neurotypical. I hadn’t told anyone I’m autistic until recently, because the stereotypes that some people associate with someone who’s autistic differ greatly from the reality of what I’m like. Sadly there’s a tendency by some to generalise, and view, people in our society who have any kind of neurodivergent condition as inferior or an inconvenience.
Historically, this lack of awareness and understanding made me feel uncomfortable labelling myself as autistic for over 2 decades, because of fear of exclusion, misunderstanding, and mistreatment by those around me. It’s hard to say, but in practice, not identifying myself as autistic has, at times, worked against me because I haven’t been able to make the most of the opportunities I’ve had. So I feel I’ve probably faced more than my fair share of rejections, in both personal and professional contexts, through people misinterpreting my communication style as a lack of skills and confidence.
For most of my life, I’ve thought that autism was a misdiagnosis, because I don’t have all the most obvious traits associated with ASD – like extreme anxiety or extreme sensitivity to touch, light and sounds.
To illustrate my point, in the UK, just 16% of autistic adults are in full-time employment. Overall, demonstration of good communication skills is almost always essential to pass a job interview. Some autistic candidates can sometimes feel excluded from a large proportion of the job market, which isn’t always very accommodating, or understanding of, all kinds of neurodiverse people.
Coping strategies for autism
Ignoring that I have ASD has often been a coping strategy in the past. I frequently pushed myself to attend as many social activities as I could, such as meetups and joining sports clubs. Most of these activities are things I genuinely enjoyed. But sometimes I forced myself to take part in activities whether I liked them or not. This was an attempt to try to fit in, because I believed that I’d make more friends that way, become more what’s considered to be neurotypical.
ASD also sometimes affects my ability to engage in group conversations easily. Occasionally, I find it hard trying to talk in long sentences about a subject or matter I don’t feel I know enough to say much about. Typically, it takes me longer to think of a response to contribute to a group discussion, by which point the conversation has moved on to something completely different. So I end up saying nothing to avoid awkwardness.
I remember my experiences at school, which were quite upsetting and soul-destroying for me at such a young age. Some of my teachers assumed my lack of regular verbal participation in open discussions in the classroom was due to shyness or laziness. On one occasion, my maths teacher humiliated me in front of the rest of my peers for not speaking up, by claiming that I wouldn’t cope out in the big world being so quiet.
When others understand and make accommodations for my condition, this makes it easier for me to feel included and valued. It wasn’t until later in my life that I found more people who were better at understanding, and appreciated, different mindsets. It was only then that I could feel more at ease with myself, and worry less about ways to cope with being with people who saw and treated me as odd and inferior.
I’ve often struggled with forming friendships because of my autism. I feel the opportunities in my childhood for making lifelong friends were often lost due to my inability to engage in group conversations. And because few of my peers were open to making accommodations. To some extent, this also continued through my time at university. But thankfully, I did meet people who were more understanding, in some cases also neurodivergent, and had more success in making some friends there.
The problem many neurodiverse people have faced, and in many situations continue to face, is the stigma attached to being non-typical. Having a brain that functions differently can make everyday experiences of life we’re all accustomed to very different and challenging for us.
We may feel ashamed and embarrassed to tell others we have a brain which functions differently from a typical one. Many types of neurodivergence, such as autism, carry with them a lot of misinformed assumptions and prejudices. Neurodiversity hasn’t always been as widely talked about as it is now. And for many older generations going back over 2 decades, there’s a stigma that comes with being seen as different that’s hard to recover from.
On a personal level, this stigma originates from negative experiences at secondary school following my diagnosis with a form of ASD, back then referred to as Asperger syndrome.
Being treated as a “special case” at school because of this diagnosis did me more harm than good psychologically.
At school, my headteacher attempted to stop me from going on a foreign exchange trip to Germany, because they felt my ASD might lessen the value my German exchange partner would get out of the experience. It wasn’t until a special case was hard fought for by my parents that the school allowed me to go. For me at least, these experiences at school felt deeply painful, exclusionary and made me want to be rid of all association with being neurodivergent if at all possible, so I could be considered “normal”.
Asking difficult questions
I think it’s important we all try to understand each other’s neurodivergence and mental health conditions better, whether obvious or not. This can sometimes mean asking difficult questions to better understand why someone behaves and communicates differently. Ultimately, we should try to treat everyone equally through understanding and accommodating their needs, rather than alienating and ignoring them.
Learning about my neurodivergence is slowly helping me to feel happier in my career, as well as personal life. It’s helping me understand that, whilst I may be different, this doesn’t mean I’m sick, defective, or should feel I’m an inconvenience to others.
I appreciate others reading this, who may also be autistic, may experience it in an entirely different way. No one should feel there’s a one-size fits all approach to judging and accommodating people on the autistic spectrum. Or for that matter, any kind of neurodivergence or mental health condition. We’re all unique and have our own qualities and needs which we should all try our best to accommodate, value and celebrate as a neurodiverse society.
My past personal experiences of feeling excluded and inferior to others motivates me in my work today. And it’s partly why I advocate for better accessibility overall here at dxw. Through openly talking about mental health and trying to spread awareness of neurodiversity, I hope we can all help to make things more accessible and inclusive for everyone.