UNISON’s disabled members conference takes place in Edinburgh this week (28-30 October). The first motion to be debated, prioritised by the delegates themselves, is about the experience of workers who are neurodiverse, something employers and society are only now starting to understand.
The motion deals specifically with the huge lack of understanding about neurodiversity as it relates to women, with neurodiverse women still failing to get the support they need in the workplace because of outdated and sexist stereotypes.
Lisa Dempster (pictured above) is one delegate in Edinburgh who knows all about neurodiversity – as someone who is both autistic and ADHD, has a neurodiverse child, and has spent several years working with disabled children.
And, she says, “I am so passionate about disability awareness. I’m open about my own disability because I want people to ask me questions and understand my condition.”
Lisa has worked for Knowsley Metropolitan Borough Council, in Merseyside, for 34 years, the last five as a support worker with a children with disabilities social work team. She’s also doing an apprenticeship in social work at university. With UNISON, she is the North West disabled members chair and sits, for her region, on the national disabled members committee.
It’s an impressive list of accomplishments, alongside that of raising three children. And it’s all the more remarkable given the challenges she’s had to deal with, for most of her life.
Lisa was diagnosed with autism five years ago, at the age of 47. Six months ago she was diagnosed, additionally, with attention deficit hyperactivity disorder (ADHD).
Ironically, she self-referred for an autism assessment as a result of researching the condition when her child Phoebe (who now identifies as non-binary) was experiencing problems at school.
“I started doing a little bit of research into what autism looked like for girls,” she recalls. “And remember reading a case study and thinking, I could have written that. That’s my life on paper. And then I thought, could I be autistic?
“Throughout my adult life, there was a lot of poor mental health. I was diagnosed with depression, I was diagnosed with anxiety, I was diagnosed with two eating disorders. There was a question mark around borderline personality disorder. I’d seen psychologists and counsellors and psychiatrists, and everyone was like, ‘it’s this … it’s this’. But I always felt as if there was something more. I didn’t know what ‘more’ was. What they were saying to me just didn’t seem to fit.
“And the more I looked into it, the more it made sense. Autism made sense with situations I’ve gone through in my life, how I think, how I deal with things, how I need to process things.”
What is neurodiversity
Neurodiversity refers to the different ways a person’s brain processes information. It is an umbrella term used to describe a number of variations, which include:
- Autism, or autism spectrum conditions
- ADHD, or attention deficit disorder (ADD)
- Dyscalculia (difficulty performing mathematical calculations)
- Dyspraxia (difficulty performing coordinated movements).
It is estimated that around 1 in 7 people in the UK have some kind of neurodifference.
The male-based toolkit
However, Lisa found that getting the diagnosis wasn’t straightforward. She experienced what she calls the “male-based toolkit”, when her first assessor, a man, told her that she met the criteria for ADHD but not autism.
“This is very gendered,” she says. “Autism was always seen as a male condition, and they’re still diagnosing under the male criteria. I know from my research that women present very differently than men. Autistic girls are more able to copy other girls, learn their social cues, how to interact with other people. Apparently boys’ brains don’t do that. So this ‘masking’ makes it’s more difficult to identify autistic girls.”
Lisa knew enough, and was confident enough, to seek a second assessment, which did diagnose her as autistic. And, rather than a terrible blow, it was a positive step forward for her.
“Since getting that diagnosis, my mental health is probably the best it’s ever been,” she says. “Because I’ve got answers to why I was like that. I’m not broken. I’m not ‘wrong’. I’m not stupid.”
She wasn’t surprised when she was later diagnosed, also, with ADHD. “You will often find that neurodiverse people will have more than one condition. And every one of those conditions has its own difficulties. How I try and explain it, for me, is that I’ve got this autistic side of my brain that likes routine, that likes order, that likes things done in a certain way, that can be quite rigid, that doesn’t like change, it can create black and white thinking. And then I’ve got this ADHD side of my brain that is just absolute chaos – it’s here and it’s there, it’s literally like you’ve got a tangled ball of wool.
“All day, every day, that’s my brain. And I’m trying to do a job and I’m trying to go to university and I’m raising a family and I’m running a home. And we’re expected to fit into this world that’s not designed for neurodiverse people. Even with reasonable adjustments in place, we are still expected to be less autistic or less ADHD in work, because there is an expectation of how people have to behave.”
Personal strategies and reasonable adjustments
That begs the question, how can neurodiverse people survive – and thrive – in a society that is built for neurotypical people?
“Well, you have your own strategies.” She laughs: “This is the extreme example. I might sit there and think, ‘Oh, I wonder what would happen if I strip naked and run through the office?’ Now, I’m not going to act on those thoughts, because I know if I did that I’m gonna get sacked.
“But it might be, I’ve got this meeting for an hour, and I’m feeling quite fidgety because of my ADHD. So I’ll have a fidget toy under the desk. So I’m fidgeting, but I’m able to concentrate.”
As for reasonable adjustments, Lisa’s own experience is positive. Each time she approached her managers, after both the autism diagnosis, then the ADHD one, the response was, ‘Okay, how can we support you?’
As she’s suggested, Lisa already had her own strategies, and therefore wasn’t sure what to ask for. But there have been two very useful adjustments. The lack of a guaranteed parking space and the requirement to hot-desk were both causing her massive anxiety, so that by the time she arrived at work both things were all she could think about. The solutions: since there was no staff parking, her senior manager arranged a permit in a visitor’s area; and she was given her own desk.
“This is how simple it can be – I’ve got a parking space, and I know where my desk is going to be. And, I can tell tell you, it makes a huge difference. When we talk about reasonable adjustments, it isn’t always this massive thing that we need. I’m not having special [treatment] over anyone else, it just puts me on an even playing field when I come into work in the morning. There probably are other reasonable adjustments that I could use, but at the moment that’s all I need. And I’m doing okay.”
She mentions one more, though. The same manager, knowing that Lisa struggled with meeting new people, would bring anyone new to the office to come and meet her. “It’s little things like that, which make me feel like you’re listening to me, and understanding me and supporting me.”
‘We’re not all math geniuses’
A similar sort of adjustment – a better word might be ‘courtesy’ – applies to her child, who’s now 15, at school: whenever there’s a new or returning teacher, Lisa thinks the obvious thing to do is introduce them to Phoebe before going into the first lesson, thus easing their anxiety about this new person.
Phoebe’s autism assessment took a lot longer than Lisa’s, an appalling four years (another issue in the country’s mental health landscape, at present, is the time it takes to be assessed, not least for children). They are also diagnosed with Tourette Syndrome and, Lisa thinks, may have ADHD. When telling me this, Lisa brings up an interesting and important new perspective on the subject.
“People often look at you and think, ‘Why are you getting your child all these labels?’ It’s not that we want our children to have labels, but my daughter was already getting labels from school – as lazy, disruptive, naughty. And I had all those labels throughout my school life, because obviously I was undiagnosed in my childhood.
“I was made to feel at school that I was never going to amount to anything – and I’m in university now. I want the correct labels, so that if my child is struggling, the teachers understand why and deal with it. And if my child decides to go to college, I want to know they’ve got the correct diagnosis so they can say, ‘Right, this is what I need you to give me, to support my learning’.”
While we talk, Lisa frequently invites me to “shut me up”. But there’s absolutely no need. She is fascinating, funny, passionate and completely on top of her subject. I’m not sure whether this is because she’s been told, too often, that she talks too much, or whether it’s one of her strategies, to make her feel more comfortable about her mode of conversation.
She agrees that the media, including films (Rain Man springs to mind), have narrowed people’s view of what it means to be autistic – the genius with no social skills.
“We’re not all math geniuses,” she asserts. “And I can be the most sociable person in the world – on my terms. When you’ve met one autistic person, you’ve met one autistic person. We’re all different. We’ve all got different strengths, we’ve all got different weaknesses.”
Lisa has a simple, but passionate message for the world at large. “Stop trying to make me be less autistic. Just try and accept my autism. We’re still fully functioning members of society. If you can give us just a little bit, we will give you so much more.”
We have used Lisa’s language throughout this article. UNISON supports the social model of disability, but we also appreciate that individuals, including neurodiverse people, need to be able to describe their own experiences.