On World Autism Awareness Day (2nd April), Touchstone’s communication officer Ben Deutsch reflects on what autism is, how it can impact on working life and why some people might not seek a diagnosis.
I consider myself autistic, but I don’t have a diagnosis for autism and I rarely use the word “autistic” in my life or my work. I definitely have a lot of traits that form part of the description of autism, but that isn’t necessarily the same thing as being autistic. And, as far as I can tell, the definition of autism and the criteria for being diagnosed as autistic are constantly changing. Eight years ago, when I started working at Touchstone, I’d never considered the possibility that I might be autistic. Since then, the more I’ve found out about autism, the more I’ve thought “that’s me”.
I’m told that getting a diagnosis could help me to get more support, but a big part of the reason I’ve never sought an autism diagnosis, is that I find the process of getting one daunting – and the reasons for that are also some of the reasons that I consider myself autistic:
- I don’t like asking for help.
- I don’t like talking about myself.
- I don’t like filling in forms or answering lots of questions.
- Any unfamiliar process is intimidating to me, especially if I think that I’m going to be measured or judged in some way.
- I don’t want anyone else telling me what I am or what I’m not.
There have been times in my life when I have overcome all those obstacles (for instance to get a job, or to complete a training course), but there have also been times when I thought I’d be able to overcome them and I haven’t (either not starting or not completing projects, not applying for housing benefit when I needed it, not completing my university degree).
I should also say that I don’t really like the word “diagnosis” around autism – because I mainly associate diagnosis with illnesses, and autism isn’t an illness. Similarly, even though my autistic traits can sometimes be a source of frustration in my life, I wouldn’t ever say that I “suffer from autism” – it just doesn’t feel like the right description. Some autistic people struggle far more than I do – I’ve been very fortunate in the kind of opportunities that have come my way, that have let me draw on my strengths.
The fact that it’s important for me to get the right words for things is another trait that I’d view as autistic. On the whole, I’d say it’s quite useful in my work – making sure that Touchstone is communicating as clearly as possible. Sometimes it can get in the way – causing me to get drawn into debates (either with a colleague or in my own head) about which of two words to use, when actually either of them would be fine.
Some of the things that have been challenging for me in workplaces over the years have been:
- I always struggle being in a space where more than one person is talking at once.
- I like things to be organised, but I struggle with staying organised myself.
- When I’m focussed on one task, I tend to forget about other tasks that have equal or higher priority.
- I don’t find it easy to start or end conversations, so sometimes I don’t ask things that would help me, and sometimes I wind up stuck in a conversation that is stopping me from getting work done.
- I get very frustrated if people don’t understand what I’ve tried to tell them, or don’t seem to think it’s important.
Some of the things that I think have been a benefit in my work are:
- I’ll take a lot of time getting the wording of a document just right.
- Logical systems, like computer programs, fascinate me, so when colleagues are getting frustrated with their software, I can usually figure out the solution to their problems. (I’m more patient with machines than I am with people.)
- The kind of details that I notice are often different from the kind of details that my colleagues notice, so together we cover most things.
- When I get interested in something, I get really interested and will find out as much as I can about it.
So, what is autism?
The understanding of autism has changed considerably over recent decades, and definitions of it are constantly being refined. So, it’s kind of tricky to give a clear definition of autism, because what’s true about it now, might not be true in the future.
Some common characteristics of autistic people are:
- Difficulties with social communication and social interaction: sometimes we have difficulty understanding other people, sometimes we don’t know how to make ourselves understood.
- Repetitive behaviour and routines: change is challenging to most people, but can be even more so for autistic people.
- Highly-focused interests: some of us like to collect information on a particular subject, categorise that information, look for patterns in it and try to understand it in as complete a way as possible.
- Sensory sensitivity: many autistic people pick up on sensory information that other people seem to filter out. For some it’s to do with noise, for others it may be smell or colour, for others it’s touch or other physical stimuli. In certain situations, this sensory stimulation can be overwhelming, in others it can be a source of comfort.
The National Autistic Society says that “autism is a lifelong developmental disability that affects how people perceive the world and interact with others. Autistic people see, hear and feel the world differently to other people.”
They estimate that about 1 in 100 people in the UK are autistic, and they say that in order to receive a diagnosis of autism, “a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these ‘limit and impair everyday functioning’.”
There’s probably a lot of people like me, who don’t want to go around saying “I’m autistic”, and maybe aren’t even quite sure if we’re entitled to make that statement. And there’s probably even more people who aren’t autistic, but who still struggle with some of the things that autistic people struggle with. So, on World Autism Awareness Day, I’d just ask that you try to notice the people who are struggling around you and think about how you can make things easier for them. I’ll try to do the same for you.