I regularly talk about being autistic online and regularly get emails and messages from people asking questions related to this, so I’ve made a little FAQ answering some of the more frequent questions I get. For my general/physics FAQ, click here.
(Questions are listed in no particular order)
What is autism?
Do you have a diagnosis of autism?
Yes. I was diagnosed with Autism Spectrum Disorder following my diagnostic assessment in December 2017. When I had my assessment, I was 21 years old and in the final year of my MPhys degree. My diagnostic report says that my diagnosis is ‘Autism Spectrum Disorder (ASD), Asperger Syndrome with classic women and girl’s presentation’.
Accessing diagnostic assessment is not possible for everyone – it is either incredibly expensive or the waiting list is years long. As such, I want to emphasise that I do not think that having a ‘formal’ diagnosis makes me more valid than self-diagnosed autistic people.
To the right is an image of the first page of my diagnostic report (some sections have been blanked out for privacy):
How has your diagnosis impacted your life?
When I had confirmation that I was autistic, it was extremely empowering for me. It allowed me to be self-compassionate for the first time. I realised that all the things I had never understood about myself and that I bullied myself about could be explained through the lens of me being autistic. It really was a turning point for me in terms of managing everyday functioning and my mental illnesses better. I still struggle and find being autistic disabling at times, but I am finally able to embrace myself fully. I also have a greater understanding of what to look out for to prevent meltdown, shutdown, or autistic burnout. I now regularly use sensory aids and explore alternative forms of communication to reduce overwhelm where I can and to self-regulate.
One of the key things that changed following a formal diagnosis was my access to support. I applied for Disabled Students Allowance which has helped me enormously during my PhD as it allows me to see a specialist mentor weekly who helps me with autism-related challenges and with sorting out reasonable adjustments. At the moment, access to this support generally requires ‘evidence’ of disability which usually means a diagnosis. I hope that this will change in the future as a diagnosis is not always possible for many people.
What are your sensory differences?
Like many autistic people, I experience differences and fluctuations in the way I perceive sensory inputs, but they tend to be on the extremes. That is, either hypersensitive or hyposensitive to a particular sensory input. Hypersensitivity is when I’m extra-sensitive to stimuli. A common example of this for me is over-sensitivity to fluorescent lights or to sounds. I tend to have a physical reaction to things when I’m hypersensitive- lights make my eyes physically ache and sounds can feel painful. When overstimulated, this can lead to sensory overload and subsequent meltdown or shutdown. On the other hand, hyposensitivity is when I am understimulated. This occurs most often for me with my vestibular and visual senses and usually results in stimming (self-stimulatory behaviour). Examples of this include things like spinning on a chair, intensely watching a visual stimulus, and applying deep pressure to parts of my body. If understimulation isn’t soothed, it can also lead to overwhelm.
I think a lot of people don’t realise that a sensory profile can change from day to day and depends on the environment. It can also be impacted by things like stress levels. This is one of the reasons why ‘functioning’ is variable in autistic individuals. The sense that fluctuates for me the most is probably audio stimuli- sometimes I can’t bear any sounds and sometimes I hum lots to make my own vocal stim.
What are your communication differences?
There has recently been research that indicates that autistic people communicate well between ourselves, but information is not communicated as effectively in between autistic and allistic people. This seems to suggest that autistic people don’t have a social communication deficit (as is one of the diagnostic criteria), but simply differences.
Like many autistic people, I prefer to communicate through written text where possible. This is because of a variety of reasons. Firstly, I just find it easier to express myself through writing (sometimes words don’t make it very easily from my brain to my mouth). I also experience and audio processing delay from time to time and occasionally experience periods of being non-verbal (which I tend to find extremely distressing). This makes it hard to hold verbal conversations sometimes given that there may be big pauses before I process what is said and reply or I may be unable to speak at all or I can only speak in fractured sentences. Having things written down means that I can return to the conversation as many times as I need and process all the information in my own time- I don’t need to rely on remembering it all alongside the cognitive load that comes along with masking during a conversation.
I like it when conversations are straightforward. Sometimes people perceive autistic people as rude, but usually, it’s just because we are clear, specific, and don’t hide the real meaning of things behind what we actually say. I need specificity to understand what is being communicated and what is expected of me. As such, I will often ask a lot of questions to ensure that I have fully understood what was said and ensure that I am not misinterpreting things.
This isn’t to say that I cannot speak well. In fact, I would say that I’m a very good presenter when I have a pre-written script that I have rehearsed. During my undergraduate degree, I tended to get good marks in oral presentations as long as my anxiety wasn’t too bad on the day. It’s just those unplanned and unpredictable verbal interactions which can be challenging. Things like interviews, phone calls, ‘chats’, Q&As and viva voce exams, especially when you consider the potential sensory challenges that come along with some venues and online video and phone call services.
I also infodump. An awful lot around people I am comfortable with. This means talking in great detail about a subject of interest for a long time and monopolizing the conversation. This is a natural part of being autistic as we have intense, narrow interests. When I start infodumping, it can be very hard to stop talking until I’ve exhausted all of the things I want to say. I think this is because it’s a way of processing my thoughts around the subject and sharing my passion.
Do you have empathy?
Yes! In fact, I would describe myself as hyper-empathetic. This means that I will pick up on the emotions and feelings of the people around me and sometimes I cannot tell if those feelings are mine or not. I am particularly sensitive to people I am close to. Not all autistic people experience empathy in this way, but the stereotype of the emotionless autistic person is drastically wrong. We tend to have trouble interpreting non-verbal communication so this can be misinterpreted as a lack of empathy.
What are your reasonable adjustments?
Reasonable adjustments are reasonable changes that remove or reduce the effect of a disability so that you can do your job. They are a legal requirement for employers to comply with under the 2010 Equality Act.
Although being autisic comes with many strengths, it can be disabling at times. As such, I need reasonable adjustments to work to the best of my ability and avoid things like autistic meltdown, shutdown, and burnout.
When I was in the final year of my degree, I had a reasonable adjustment to take my examinations in a smaller exam hall where there were fewer sensory inputs. As a PhD student, we have put in place a few adjustments:
- Allowed to use sensory aids in the office, such as a weighted blanket, tangle, and liquid timers
- An additional divider between my desk and the one next to mine in the open office to block off my visual line to the thoroughfare and printer
- One work from home day a week (pre-COVID) so that I can be in a fully controllable sensory space and limit the sensory cost of crossing town and campus
- Access to a small ‘sensory room’ where I can go to work if I need a darkened or dim room to decompress and avoid meltdown or shutdown if I am close to sensory overwhelm
- Weekly meetings conducted via teams chat to allow me time to process everything and express myself clearly
Why do you refer to yourself as ‘autistic’?
Like many autistic people, I prefer identity-first language. Autism is not a disease, it’s part of who I am as a person. You wouldn’t say ‘person with lefthandedness’, you say ‘lefthanded person’ or ‘they’re lefthanded’. In the same way, I view autism as integral to my very being (not in the sense that it fully defines me but in that it is part of who I am, much like being right-handed). This is why I prefer being called autistic over a person with autism. If you’d like to read more about this topic, I recommend this article which articulates it much better than I could!
I prefer to just go for the simple ‘autistic’ over Autism Spectrum Disorder, Autism Spectrum Condition, or Asperger Syndrome. All of these are quite pathologizing language. If anything, I would describe it as ‘Autistic neurotype’ which to me reduces stigma and the negative association of words like ‘disorder’. I also do not want to be associated Hans Asperger in any way given that he was an unpleasant man. There is also the fact that Asperger Syndrome is no longer a diagnosis. My diagnosis starts with ‘Autism Spectrum Disorder’ and I like referring to myself as autistic.
If you are interacting with an autistic person, it’s best to ask what their personal preference is in terms of language.
What is neurodiversity?
Neurodiversity is a word that describes the neurological and cognitive variation within the human population. It is a fact about the world and something that should be emabraced.
The neurodiversity paradigm and neurodiversity movement seek to reframe people in neurominorities, like autistic people, and to shift perception away from the concept of neurodivergent people being ‘defective’. Here is a brilliant overview of the various terms around neurodiversity.
Where can I learn more?
I think that the best way to learn about autism is to read the stories of autistic people. This is a brilliant list of lots of autistic bloggers who talk about their lived experience- I encourage you to seek out a range of autistic voices from different backgrounds: https://anautismobserver.wordpress.com/
The invisible oppression of the autistic female | People’s World
Resource Library | The Autistic Self Advocacy Network
What is Neurodiversity? | Judy Singer
Clearing up some misconceptions about neurodiversity | Scientific American
Autistic People & Empathy: What’s The Real Story? | The Art of Autism
Autistic Spectroscopy: Exploring what the “spectrum” means | NeuroClastic
The costs of camoflaging autism | Spectrum News
Study Calls For End To ‘High Functioning Autism’ Label | Disability Scoop
Exploring Autism: What is an Autistic Shutdown/Autistic Catatonia? | Autistic and Unapologetic
Recovering from meltdowns: info for autistic people and carers | Bristol Autism Support
Autistic Skill Sets: A Spiky Profile of Peaks and Troughs | NeuroClastic
Me and Monotropism: A unified theory of autism | The Psychologist