At the start of April we marked World Autism Awareness Week by signposting to a video by an IPO employee who is on the autism spectrum (see here). Following on from that, we’ve a guest blog by Paul Dakers, technical assistant at UDL Intellectual Property. Through his personal experiences, Paul sheds more light on what it means to be on the “autism spectrum”. We are grateful to him for these rare and candid insights, which will help us all to be more inclusive towards colleagues in a similar position.
Meanwhile, keep an eye on our Events page for details of a webinar about the autism spectrum and neurodiversity, currently being planned for September 2019.
The first week in April was World Autism Awareness Week. I’d like to tell you a little bit about autism and the challenges that many people with it face each day — and I’d like to do this in as personal a context as I can.
What is autism?
Autistic Spectrum Disorder (ASD), as the name suggests, is a spectrum of symptoms that a person with ASD may experience, with varying degrees of severity. These symptoms include:
- difficulty with social communication and understanding of social norms, particularly the “unspoken rules” of social interaction
- repetitive behaviour
- a need for routine
- restricted and highly-focussed interests
- sensory sensitivity
- demand avoidance
At the end of this article are a number of links to websites which go into the definition of autism and the nature of its spectrum in more detail. Next, I’ll discuss a subset of these symptoms.
My diagnosis — “High-Functioning Autism Spectrum Disorder”
Near the end of 2017, I was diagnosed as being on the autistic spectrum. I’d like to go into a little detail on the symptoms that I experience with greater intensity than others, but before I do that, I’ll briefly discuss the name of the condition with which I was diagnosed — “High-Functioning Autism Spectrum Disorder, consistent with Asperger’s Syndrome”.
I dislike this phrase for a number of reasons. The most obvious might be that it does not appear to me to be a disorder — I am not confused or untidy; I enjoy, and often feel strongly compelled to, plan in great detail; and I am not unhappy or ill. Other people I know with autism likewise do not appear to be confused or otherwise unwell. I dislike the label “high-functioning” for the simple reason that it labels others as “low-functioning”, which is at the very least an unhelpful starting point for understanding the challenges they face.
That being said, ASD can (and often does) feel like a disability to me.
Struggling with conversations, constantly thinking about what to say, how to respond, how to stand or sit or where to look, whether I’m being appropriate or inappropriate, how to end a conversation because I’m nervous or want to get back to work, or because I don’t know what to talk about next, and sweating the whole time with the effort. Successfully interpreting body language, tone of voice, and gauging others’ interest in a conversation topic is, at best, hit and miss, and “reading between the lines” in a social situation is all but impossible. I am much more comfortable with written communication, and it is my experience that a number of those who fall near to me on the spectrum feel this way too.
Overhead lighting. In particular, daylight-style light bulbs — you know, the blue-ish ones? Crowds. Traffic. Any high-pitched sound, any unexpected sound and any sound over which I have no control. Each of these can induce a lack of concentration, a feeling of anxiety, and (over time) mood swings and even rage. The greatest purchase I’ve made in recent years is a quality pair of over-ear noise-cancelling headphones, which grant a level of control over environmental noise that has dramatically improved my quality of life. Commuting by train is no longer a literally painful experience.
Much like introverts, after any period of hard work or social interaction, or generally just being outside my home, I find it very difficult to begin relaxing. For me, “being relaxed” is an end goal of a process which often takes a number of hours and is not often achieved, depending on whether I’m able to successfully “switch off”’. Dwelling on past tasks performed and conversations had over recent days, worrying about not having planned the next few days or simply not knowing exactly what the next few days hold — and therefore, of course, not being able to plan them — all contribute to anxiety and even a feeling of helplessness which prevents switching-off and obstructs the process of achieving that end goal.
A myth to bust
Many times, I’ve heard the phrase “we’re all on the spectrum somewhere”.
Please do not make this mistake, and consider not saying this to people who are autistic. It makes light of the condition and shows a misunderstanding of what the autism spectrum really is — a characterisation of atypical neurological symptoms. It is not atypical to be introverted, to dislike traffic noise, or to feel better when some aspect of your day-to-day life has been meticulously planned. It is atypical to have your mental (and often physical) wellbeing strongly depend on these things, and on many other things not discussed here.
Can I help?
Thank you for asking. You have already helped just by reading this article. Feel free to contact me at firstname.lastname@example.org with any specific questions — I don’t mind talking openly about my condition if I know that you don’t mind hearing about it.
Please remember though that my experiences, which I’ve done my best to elucidate, are not the experiences of others on the spectrum.
Fraser Stewart is a patent examiner at the UKIPO. You can learn about Fraser’s experiences here.
Alison Madgwick works in the patent law field. You can read about Alison’s experiences here.
I’d actually like to take this opportunity to thank Alison — if it weren’t for the openness she showed when discussing her experiences with me three years ago, I don’t think I’d have recognised my condition and sought the diagnosis that has improved my life since. Cheers Alison, I owe you one. My hope is that, by writing this, I’ll have helped someone else in a similar way.
- The National Autistic Society’s introduction to Autism and Asperger’s: