Q&A Session – September 2023

An image with a white background and the words "Q&A Session" at the top in black. The image shows a group of nine cartoon people all highlighted in the charity colours, red, yellow, blue and green. Each person is uniquely different and they have question marks above their heads.

Hello All!

Thank You to those who attended our Q&A Session; it was a good range of questions and discussions. Originally we had planned to record the meeting and put up the video, but there were various reasons why we thought actually doing a blog post and putting it all down in writing might be more accessible.

Present at the Q&A were:

Trustee Board Chairman (TBC) – Justin Donner
Chief Executive Officer (CEO) – Claire Smith
Chief Operations Officer (COO) – Louisa Hackford-Gentle
Chief Finance Officer (CFO) – Jonathon Whyte

Sadly all the Heads of Service were unable to attend, but between the team, we got all questions answered in an open and transparent nature.

The aim of this Q&A was just that, to show that we’re a charity managed by Autistic adults, and we want to be as open, honest and transparent about what we do and why we do it. So there was no “politician” style answer dodging in this session.

Below are the questions (in the black box) and a summary of the answers given; we’ve used the abbreviations of staff titles in the answers to make it easier to read, so rather than repeating “Claire Smith – Chief Executive Officer” it will read “Claire (CEO)”.

How & when was Autistic Nottingham founded?

Claire (CEO) answers, “Well, that’s complicated. When I moved to Nottingham around 2017, I joined a small social group that was affiliated with the NAS (National Autistic Society). I volunteered time to support the running of the group, and over time, the person who ran it needed to take a step back, so I ended up being the “Chair”. The small committee we had decided to take the group away from the NAS for multiple reasons and become our own organisation. It was in June 2019, we became a formally registered charity. To do that, we needed a Trustee Board of volunteers; Justin used to come to the social so we asked him to be on the board”

Justin (TBC) continued, “Yes, I had a lot of experience on boards and committees but never as a Trustee, so I was really excited to be there right at the start to say “Wow, a charity entirely run by Autistic people? and I was there!” is incredible. We’re the first people to have done that (although I know there are more Autistic led charities now), and we’ve just continued to grow”.

Claire (CEO) said, “We formed our Trustee Board and our Executive Committee of people who were there at the start; we’ve never “hired” any managers because we were all founders”

Louisa (COO) interjected, “Well, apart from me?”

Claire (CEO) replied, “Ah, so Louisa is a bit different; she was there from the start but worked as a private PA for more. I was self-employed and spent the rest of my time working on the groundwork of the charity. As part of our PA time, she would help me run admin tasks like posting documents, getting coworking spaces set up, etc. She then volunteers a lot of her time to get the charity founding documents completed and our starting funding applications. When we actually got some money through from the National Lottery, the first thing we did was make sure she had a job running our PA service. When she got diagnosed as Autistic, I went to the Trustee Board and said we needed her for operations because she’s been here since the start, knows all the ins and outs, and we’d be lost without her. So yes, Louisa wasn’t really hired; she was more waiting for her “Autism confirmation” haha and brought on a little later.”

From what I know of Autistic Nottingham, most of the staff are Autistic? What adaptions have you made to the workplace? and What can I take to my future employment?

Johnny (CFO) answered – “Well, here’s the thing, because all the management are Autistic, we’ve mostly already figured out what adaptions needed to be made before the staff had to. Our office lighting was originally automatic, so as soon as you walked in, the bright strip lights came on, and we had no control. What we did was get the building manager to deactivate them, and we use personal desk lamps to control our workspace lighting. We have low-level “Lofi” music in the background so the room isn’t deathly quiet, and we all get annoyed hearing each other breathing!. We also make sure all staff have an access to work assessment if they need one; we’re quite proactive in offering to do the paperwork with employees (if it’s appropriate for their role). The difficulty with any advice you can take to your future employment, based off what we have done, is that you’re unlikely to work somewhere with an entire management team of Autistic (or even neurodiverse) people. The best thing I can recommend is that you are proactive in booking one-to-one meetings with your line manager, and you take with you to those meetings what is causing you difficulty. It shouldn’t be all on you to solve the issue, and quite often I see line managers asking “what do you want” and when the employee doesn’t know, they take it as they don’t want anything and leave it. If you can go into a meeting and say “the lights are hurting my eyes” or “where I sit is too close to a loud photocopier” your manager should be the one to suggest what’s reasonable. That is the problem with the “reasonable” in “reasonable adjustments” they will never be the same in two places, and that’s why having that open and honest discussion is vital so you can understand what is doable and what isn’t, and if it isn’t, it should be explained to you why not.”

How many “Members” does Autistic Nottingham have?

Claire (CEO) answers – “mmm depends on what you class as “Members”? The “Members Area” of our website, for post-diagnostic events, has around 250 members registered at the moment. We have over 30 people who access our support service (who have social care budgets for support workers), we receive anywhere from 100-300 contacts a week across phone, email and social media. We don’t know exactly how many beneficiaries (Autistic people without intellectual disabilities) we have in Nottingham/shire due to poor data managing. Often Autistic people are classed as intellectually disabled (even when they are not) so we don’t have a clear figure, but from the data available, we can estimate there are around 2,000-4,000 people in Nottingham City & County who would be classed as our “beneficiaries” even if they don’t access our services.

How do you go about becoming a PA (Personal Assistant) with Autistic Nottingham?

Louisa (COO) answered, “You can go to our website, and there is a page with the job application on; we are constantly hiring for PAs especially ones that can drive. The job vacancy page covers the full job description and has a tab of benefits of being an employee such as being “Real Living Wage Accredited” which means every April our staff get a pay increase inline with what the Real Living Wage Foundation recommends. We don’t need experienced people but we do need people who can be responsible for someone else whilst lone working. Being a PA can be a really fun and varied job but you need to be someone who can go to an Autistic person’s home (or meet in the community) and be their support, be someone who doesn’t judge but can guide them to reach their goal.”

Would Autistic Nottingham consider creating and selling merchandise? Because I think that would be really cool!

Claire (CEO) answered, “Actually, we have been discussing this recently! We have a new Social Media & Content Creator who has been making some suggestions. We’ve been discussing what merch and how to do it? We’d like to run a competition for designs, but we don’t want to be one of those “submit your intellectual property and we make money from you” so we’re looking at a way to give back to people who would give us designs, whether a percentage of the sales or a one-off payment… It’s all in discussion.”

A beneficiary in the call requested “Can it not be T-Shirts, they never fit me” 

Claire (CEO) responded, “We will do T-Shirts, but we will make sure to do other things, I think we’re really leaning towards fidget toys, but it’s figuring out the logistics”

If anyone would like to discuss creating designs for Autistic Nottingham, please do get in touch

Will Taste & Trial be coming back?

For those who don’t remember the “Taste & Trial Club” we will give some context. Throughout 2022, we had funding to put on a “food-related” event, and we chose to do an event where Autistic people could come together and do something many of us wouldn’t usually fathom… trying new food!  Every month we had a different theme, for example, Chinese Takeaway. We would order a large amount of various Chinese dishes, lay them out on the table, and everyone would try things at their own pace. We had little scorecards to write down what we tried and if we liked it. It was a really supportive environment where if you hated what you tried and had to spit it out, no one judged you; mostly, everyone just nodded in understanding. 

Claire (CEO) answered the question, “The difficulty we’ve had with Taste & Trial is funding and venue. The funding we received was used up, and we haven’t yet found a new fund to be able to put it on free or discounted.”

Louisa (COO) interjected, “I am responsible for funding applications, and I do keep an eye out for food-related funding. When you’re applying for funding, there is usually a “theme” behind the grant, like employment, or exercise, or food in this case, and recently I’ve just not had as many food-related ones to reapply”.

Claire (CEO) continued, “We could make it a charged event, but when we did the math, you would be looking at £10-20 a ticket, and that wouldn’t be accessible to a lot of people. The venue was the next issue, we can’t do it at our offices in Basford because the meeting rooms have no windows. So if we had a curry night in there, the next day when people are coming to work in there, they will have to put up with the smells. That’s not fair on Autistic people (expecting them to work in a room full of old smells) so I don’t think it’s fair to do that to people are/may not be. We tried Hucknall Leisure Centre, a lovely venue but people found it hard to get to; we tried YMCA Community Centre, but it’s a steep incline up their drive which was hard for wheelchair users and other physical needs.

So the short answer is that we’d love to do it again, but we need some funding to back it up and an accessible local venue to put it on. We are on the look out because we know it was a really good event”

Why has the charity suddenly changed from “post-diagnostic only” to offering pre-diagnostic support?

Claire (CEO) answered; “Well, that’s a complicated one. When we founded, we were very strongly all Autistic people; pre, post or self-diagnosed, the issue we came up with was funders”

Justin (TBC) interjects “Yes it’s hard to say to funders “we will support Autistic people even ones who self diagnose” because the response we would get was “How are you ensuring our money is definitely going to Autistic people if you’re allowing anyone in?”. So we had to adapt, to start with, to say “diagnosed Autistic adults” get a solid foundation as a charity, and then as we currently are doing, expand.”

Louisa (COO) continued, “Yes it’s been really difficult to explain to people, especially as many of us (like me and Claire) have experienced what it’s like being sat on the diagnostic waiting list, no support, no social groups, just sit and wait.”

Claire (CEO) continues “Since the commissioning of a pre-diagnostic advice and guidance service we’d shelved our plans to expand into pre-diagnostic because, well, we don’t have the money, and someone else does, so why would be duplicate it? We’ve been waiting over a year for that service to materialise and what has come hasn’t been what the community expected. So, we’ve been asking around for funding, especially for pre-diagnostic and have achieved very little as it stands today. Every we’re offering in September is a trial, the idea is we run them, get feedback, and use that feedback to take to funders to say “Hey, Look, people need these events!” because funders often want to see evidence of something working before they will give a grant for it. Which feels really counter intuitive! but we’ve pulled together some donations and reserve money to give it a go.”

This all sounds great! Any advice for someone who is seeking a diagnosis?

Louisa (COO) answered, “We have a talk for people seeking a diagnosis run by Kathy from our Training Team; it’s online and is on Thursday 21st September at 7pm. That’s probably the best place to go, Kathy will talk about diagnostic criteria and what it does/doesn’t look like and some ideas about how to get a referral especially when people are throwing barriers up”

Pre-Diagnostic Support

To find out more about our pre-diagnostic offer

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