Autism Acceptance Month at Together

Firstly we wanted to share some insights from people who use our services at our Wakefield Advocacy Hub and specifically members of the WAVE group for autistic people. For that we asked a series of questions which they’ve responded to below with their own lived experience:

Questions and answers from WAVE

At Together’s Wakefield Advocacy Together Hub, the Volunteer Scheme support existing Groups in the community to engage fully with making changes in their locality. One of those is the Wave group for autistic people and for Autism Acceptance Month we asked some of the members to share their lived experiences. The questions we asked are below with a mixture of responses from members Adam and Ben and volunteer Max:

Could you tell us about your lived experience of being an autistic person and what that means to you as well as how that interacts with your mental health and wellbeing?

Never feeling ashamed or embarrassed about being autistic whilst recognising daily struggles.

OCD-constantly battling with thoughts and worrying that I have done something or said something wrong. Worried about upsetting or offending people.

Struggling to find work and wondering whether to disclose that I am autistic as this seems to be a barrier to being employed, but then worrying about getting a job when the employer doesn’t know I am autistic.

Worrying about fitting in whilst also really wanting to be on my own.

Crippling constant anxiety, which is an illness. Social failure which is not understood and as such a general dislike for people.

What are some of the things you enjoy about attending the Wave Group at Wakefield Advocacy hub and the support you receive from the staff there as well as meeting with other autistic people and peers of yours?

I feel validated, understood and reassured when other people tell me similar/same difficulties that I face. I also feel great about myself when I realize I am doing well with things most Autistic people struggle with. eg. Supermarket shopping. (We all have different difficulties and I am not putting anyone else down and I’m happy for others to feel the same way in reverse. I don’t need to bring others down to feel good about myself)

Feeling like you belong somewhere and won’t be judged.

Being able to talk honestly and knowing that it is confidential.

Getting advice about practical things such as benefits and employment. Feeling useful when we are asked to carry out projects.

Sharing experiences so you don’t feel alone.

What are some of the things you think people should know about autism and autistic people and are there any assumptions or misconceptions you’d like to correct?

A misconception that we don’t have empathy when actually we are very caring and worry about how other people are feeling.

Constantly struggling with anxiety (and depression in many cases). Decision making can be overwhelming, then people push you and criticise you for not making simple decisions. eg. Going to Supermarket for one type of bread and seeing another you might prefer and then going back and forth trying to decide which one for many minutes. Similarly, spending hours trying to decide whether to go out/ do something more important and often defaulting to the “do nothing/ status quo” option because of inability to make a decision and/or fear of social situations and the unknown.

Everyone who is autistic is different!

Interview responses by Charlie Hart, HR Analyst at Together and Autism Advocate

Charlie Hart is HR Analyst at Together and is also an advocate for autism sharing their own lived experience within Together and externally. For Autism Acceptance Month Charlie took part in an interview for an international event on the topic and their responses are included here:

What does accessibility mean to you?

Reducing or eliminating barriers to inclusion or success, which requires conscious inclusion.

What is your big “why” for advocating in WORKPLACE?

Workplace inclusion is my niche because I’m a qualified, experienced HR professional with plenty of knowledge of employment legislation and inclusion best practice. As I have lived experience of navigating the social and sensory challenges of work, as an autistic working mum of autistic kids, I have plenty of ideas about what helps us and what can fail us.

What has been the biggest accessibility challenge you have faced in your own WORKPLACE in the past?

Working on projects under pressure from unrealistic timescales, with actions communicated verbally in meetings.

What are your best tips or insights into creating more accessibility from the WORKPLACE organization side?

Embracing neurodiversity and celebrating the advantages of including people in the workforce whose brains are wired differently is the first step to being an ally to people with neurological differences. Colleagues can also support us with our challenges, help break down barriers to inclusion, and accept us for who we are so we can thrive as our authentic selves.

We all have unique strengths and challenges, so understanding these is key because everyone has specific accessibility and support needs. Autism, for example, is a spectrum condition, which means that it affects people in different ways.

It is unhelpful to stereotype people based on their neurological condition, so please do not make assumptions about what their support needs are or about the characteristics of their condition. For example, some autistic people may feel uncomfortable turning on their videos during online meetings. Personally, video calls do not bother me, but I do prefer people to message me in advance rather than video calling me without warning. Allow the individual to tell you if they need support, and if so in what way, rather than making assumptions about what they can or cannot do.

Understand that some autistic people may need extra time to switch from one task to another, as we may struggle with scattered meetings throughout the day and with back-to-back meetings. You may want to consider consulting us before sending us meeting invites, as we may need larger chunks of time to focus on a single piece of work and become overwhelmed when flitting between meetings and tasks all day. If I have a day with lots of task switching, I often simmer into meltdown by the time my kids come home from school. Please be supportive if we get overwhelmed. Notice meltdowns, shutdowns, and signs of burn-out. We might need a fresh air break or an extended toilet break to de-escalate!

Some autistic people may need specific instructions broken down into manageable chunks, and it can also be helpful to confirm expectations in writing. When interviewing someone, you may want to consider presenting the questions one at a time instead of asking a series of questions in one go. Breaking down information into manageable chunks, in fact, makes information more accessible for everyone.

Be accommodating to people with sensory issues, for example by allowing headphones, earphones, sunglasses, anti-glare screens, lower lighting, blinds. If noise causes sensory overload for the autistic colleague you need to speak to, consider arranging the meeting in a quieter area. Understand that some autistic people struggle with video calls.

Challenge your own expectations about social behaviours. Some autistic people struggle with small talk and find greetings awkward. Be aware of potential anxiety caused by unexpected telephone calls and desk visits. Equally, some autistic people may be fine with such calls and visits. Vary your approach according to the individual’s specific needs.

Understand that some autistic people may struggle to see the unwritten social rules that neurotypical people take for granted. Some autistic people may struggle to read and use body language in the social context and may rely more on verbal or written communication. You may want to consider using more direct verbal or written communication rather than relying on body language.

We can be passionate about our topics of highly focused interest – not just our hobbies but topics could be work-related too. This passion can lead to us interrupt people or dominate meetings. Please let us know when to stop talking, and not with subtle hints. This is not the same for all autistic staff, and many are quiet in meetings, especially online meetings, and can even become situationally mute. It is important that meeting facilitators ensure those people still have a voice, for example by allowing contributions through the chat panel.

What tips or best practices would you like to share to help aid other ND WORKPLACE?

Foster a culture of psychological safety, where employees feel safe to be open about their individual challenges and support needs.

Make sure your inclusion policies are not tokenistic but are followed through for the whole employee lifecycle.

Mean what you say, and practice what you preach, for example do not publish a lengthy inclusion and wellbeing strategy and then tell an employee that you don’t have time to accommodate their individual needs.

If you are drafting a policy or process and want to ensure it is inclusive, consult your disability or neurodiversity staff support group. If you don’t have one of those, you really should.

What is the most important point you’d like to share around accessibility in WORKPLACE?

Sending interview questions in advance to all candidates is better for everybody. This is a universal design principle which helps candidates and employers get the most out an interview.

Inclusion should be a two-pronged approach – universal design to help everybody and accommodating individual needs.