Understanding the autism spectrum: “things we don’t...
Understanding the autism spectrum: “things we don’t think about, we have to start thinking about”
Malvika Jaganmohan, BPTC student and Development Assistant for the Autism Law Service, describes the overwhelming impact of the National Autistic Society’s training day on ’Understanding the Autism Spectrum’.
The violent purple of the seat cushions; the blinds that don’t quite line up with each other; the clattering of coffee cups as the catering van was wheeled in; the woman clicking her pen in the middle of the room; the blinding projector light; the shuffle of papers and the buzz of chatter.
These are all things that “neurotypical” people – that is, people not on the autism spectrum – take for granted. These are environmental factors that, until our training consultant, Mandy Rutter pointed them out, all of us overlooked. We don’t worry about things like this when we wake up in the morning, take public transport to work, sit in the office or attend an event. We don’t find strange environments frightening or intimidating.
On Friday 23 June 2017, the NLS Legal Advice Centre staff, along with a selection of students and other interested participants, took part in the National Autistic Society’s training on ‘Understanding the Autism Spectrum’. This ranged from exploring the history of our understandings of autism, to the impact of anxiety on autistic people. We also had some eye-opening insights from Paul Sandford of Translate, a volunteer-run organisation addressing the needs of people affected by Asperger’s Syndrome in adults. As an autistic man, Paul spoke from his own experiences as a child who couldn’t understand the social faux pas of telling his teacher that he was wrong, to a teenager that failed his Maths O-Level for writing down all the correct answers but not the working out.
While I could probably write a lengthy essay on what I learned over the day, the powers that be (the moderators of this blog) won’t let me go on and on. So here are some key thinking points from the training as food for thought:
We need to adapt our approach to clients with autism
One of the driving forces behind the creation of Autism Law Service was the increasing awareness amongst the Centre’s staff that some autistic clients have needs that require particular attention.
A recurring theme that arose during the training day was the difficulty in managing welfare benefits appeals for people with autism. Any FRU Social Security representative will be aware that, in order to obtain state welfare such as Personal Independence Payment or Employment and Support Allowance, a series of “descriptors” need to be satisfied which are often arbitrary and fail to capture the full severity of an individual’s condition.
Some may recall the movie ‘I, Daniel Blake’, which opens with the back and forth between Daniel and a health assessor where he tries (and fails) to discuss his serious heart condition, only for his attempts to be deflected by questions that have nothing to do with his heart condition.
This poses particular difficulties for some people on the autism spectrum. Autistic people may struggle with social contact, which might make it difficult for them to engage in meaningful discussion about their condition. This, in turn, makes it difficult for their adviser to gather the appropriate evidence to support their appeal.
Autistic people may have difficulty estimating, or dealing with eventualities and uncertainties. For example, if an autistic person is asked if they can stand and walk more than 200 metres, either aided or unaided, it may be difficult for them to deal with a hypothetical situation where they would do this, and how they would react.
Mandy emphasised the struggle faced by some autistic people in processing information. When asked a question, they may require more time than neuro-typical people to process what is being asked of them; every interruption or prompt might cause them to start from scratch because their thinking is being repeatedly halted. Therefore, autistic clients may need more time during conference to appreciate what is being asked of them, process that information and give their response.
It became obvious that, in order to gather the best possible evidence from our clients and progress their case, we need to adapt our training to take into account these nuances.
One of the questions we had going into the training is what kind of language we could use to frame the objectives of the Autism Law Service. Do we say autistic? Autism spectrum? Autism spectrum disorder?
Mandy outlined the fascinating evolution of our thinking about autism and the language we use to discuss autism. When she began working with the NAS many years previously, the word ‘autistic’ was frowned upon, because it was considered an unwanted label. However, as time has moved on, Mandy explained, it appears that autistic people have wanted to reclaim the label ‘autistic’.
Although, of course, every autistic person may have a different opinion on terminology, she suggested that we veer clear from the negative terminology of “disorder” or “condition”. But when in doubt: just ask what language they prefer!
“Things we don’t think about, we have to start thinking about”
Awareness was impressed upon every participant in the training. In one exercise, Mandy asked us to close our eyes and try and feel the material of the chair upon which we were sitting. Did the texture feel corrugated, like the weaving of the fabric was going up and down?
Paul asked us if we can recall that feeling of walking down the cleaning aisle in a supermarket and being bombarded by the harsh, cloying scent of products and fluid. While we all looked at each other in confusion, he declared: of course you don’t!
In Mandy’s words: all of these things we don’t think about, we have to start thinking about. Some autistic people find light touch quite painful – something to keep in mind if you brush your client’s arm when passing them some documents. Autistic people may be particularly sensitive to smell, so perhaps lay off that heavy eau de cologne. Your client may find bright colours jarring, so have a think about leaving that multi-coloured Christmas jumper in the back of your wardrobe.
This barely scratches the surface of the fascinating discussions we had over the course of the day. I definitely have plenty to mull over as the Centre goes back to the drawing board, thinking about how we can revise our own training and procedures to cater to the needs of clients with autism.
If you have any ideas for the development of our Autism Law Service, please email NLS. firstname.lastname@example.org, and if you have a chance, take a look at this powerful video from the National Autistic Society.
About the author
Malvika Jaganmohan is currently undertaking the Bar Professional Training Course at Nottingham Law School, having completed her Law degree at the London School of Economics and Political Science (LSE). She is due to commence pupillage at Coram Chambers in October 2018.