World Autism Acceptance Week 2024
‘I am autistic.’
According to The National Autistic Society, autistic people face discrimination and barriers across all sectors of society, from health and social care to education and employment and everything in between.
Only 29% of autistic people are in any form of employment.
We have been speaking to our colleagues about their experiences of autism. In this piece we hear from a colleague at Community Links who is autistic. They share their story and some helpful advice on how we can support colleagues.
I am autistic. Some of you would tune into this as soon as you met me, and others would think, ‘Aha, that explains certain quirks’ if I told you I was. However, others of you may not believe it. Maybe I do not meet your perception of what a person who is autistic looks or acts like. Like a huge percentage of autistic people, I do not have a learning disability, but I do have learning differences.
There will be many things in day-to-day life that you may take for granted or not give much thought to, which may cause me some confusion and anxiety, or which I may ‘appear’ to fit in with, as in a chameleon manner I have wrapped myself in camouflage and now blend into the role.
My need for detail may make me appear finicky, and my need for order may seem, at times, pedantic. I may be the slightly annoying one who always asks the questions in meetings, as I just need to know and understand. I may speak without filters at times, which may take people aback or maybe you find it refreshing. I may also be the person who sees things from different angles. The person who is not afraid to question and challenge the status quo. And in a service environment, a person who really ‘gets’ the many people who access the different services who are autistic and then can walk some of their walk alongside them.
Sometimes I feel I am one of the lucky ones, as I am employed (and in a job I enjoy), as almost three quarters of people diagnosed as autistic do not have a job, despite many of them wanting one. There are many things that can be done to make a workplace accessible, and a lot of these best practices can be adapted to suit autistic service users.
These are just a few of the things that may be helpful:
| Employee / Potential employee | Service user / Potential service user | |
| Website | Need: Clear, concise, and non-ambiguous information. Using short paragraphs and bullet points.
Clearly including the aims and objectives of the organisation. Avoiding flowery descriptions or too much back-patting (this can either be confusing or can feel disingenuous) Reason: We need clear and easily accessible information but not the peacocking when looking at the website in preparation for an interview. |
Need: the same
Reason: To quickly decipher if it is a service worth considering, as it may take a huge effort to even look for services in the first place. |
| First visit to the organisation/service | Before interview: Visual guide of the building. Information on how long the interview is likely to take. How many people will be on the interview panel?
Give the questions in advance where possible (even 10 minutes before as the person waits, but let the person know they can expect this to happen).
During interview: Clear expectations of how much or little information to give in the answers. Ask unambiguous questions as the person may take things very literally. Either agree on a queue or verbally let someone know if more detail in the answer is required or if it is time to move on to the next question as common communication questions may not be obvious to the person. As one part of a question and a time, and maybe clarify with the person they have understood the question.
Please be aware that harsh lighting or background noises may add stress to the person. |
Before visit: Visual guide of the building. Information on how long the appointment is likely to take. Who they are meeting and what to expect.
During visit: Outline expectations for service and potential service user. Check on sensory needs. Agree what works best for them if they become overwhelmed and what this is likely to look like. |
| Meetings | Needs: Take on board that some days the person may ‘appear’ more autistic than others. Just because someone was able to contribute at one meeting, does not mean they will be able to contribute the same at the next meeting.
Round table approach may work well, so each person knows when to talk and feels valued.
Clear agendas that display a visual clock of when each part of the meeting is going to start and stop.
Explanations/reasons.
Allow breakout rooms if small group discussions to avoid overload.
Please be aware that harsh lighting or background noises, or certain foods/smells may add stress to the person. |
Needs: Trauma-informed approach.
It can take a lot of energy and resilience to constantly have the challenge of dealing with communication differences, cope with sensory overload, deal with the anxiety of not knowing what to expect and manage any changes, or act as is deemed appropriate. Clear expectations. Distraction apparatus such as fiddle toys, or sensory lighting may be helpful. Language really matters. Please be aware that harsh lighting or background noises, or certain foods/smells may add stress to the person. Health passport that can be used in all appointments at service outlines the person’s preferred communication style, sensory needs, what overload looks like, and what they would like to happen if they are overloaded. |
Whilst not an autism professional as such, I am an expert by experience (my two daughters and I all share being autistic and having ADHD, sensory processing disorder, dyslexia and dyspraxia) to candidly discuss any of the issues raised above.
I will finish by sharing that just last month, I heard an NHS professional who deals with the adult’s Autism and ADHD pathway say in a perplexed way, ‘Some people want a diagnosis of autism, but it will close more doors for them.’
I received my autism diagnosis at the start of March 2024, aged 51! It was a bit of a rocky road getting one (like is often the case in both children and adults with different neurodivergent diagnoses), but the validation was extremely important to me. It meant I am not just someone making a fuss about needing to know details or having inappropriate reactions (as things really bother me). It is my brain and whole being working in a different way to the majority of people. Not better, not worse, but different – and difference in life is needed!
I was certain I was autistic, but as well as the validation, the diagnosis meant I could say to my autistic daughters that you can be autistic and do ok. Also, so that I can help break down barriers of what an autistic person ‘looks like’, plus so the autistic service users know that I really do get it.
Finally, when I heard that statement about doors being closed, I thought, either the doors are not worth going through, or I will smash them down if I need to get through them!
N.B. We are aware that whilst certain terminology has been used in this piece, we know that many people prefer to use different terms that they are more comfortable with. Please do ask people what their prefer