Jim’s story

Description:

Jim is a 33 year old PDAer and has worked at Waitrose for 7 years. He likes to raise awareness of PDA and share his story so that parents know that things can turn out well for their child despite how challenging circumstances may be along the way. Jim also shares details of his time at school, masking, developing the skills to live independently and his love of writing and driving.

I’ve been working at Waitrose for seven years. It was my Mum who suggested I apply for the job originally because Waitrose is known for being inclusive and taking care of its staff, and because the store where I work is local to me. I worked my way up, starting with a few hours on a Saturday, then taking on some evening shifts. When a full-time worker left, my manager was delighted for me to take over the role. To feel valued and be called a ‘key player’ at work is really special.

People wonder how I cope with being told what to do. I do still have a bit of a feeling inside when I’m told to do things, but I’m very meticulous and pre-prepare things to make sure that really busy days don’t go beyond my control. This helps me to cope.

Christmas time in supermarkets is really busy, and the first year at Waitrose I wondered how I’d manage. It’s a really demanding situation, but because I want to do it I find it easier to handle. Every Christmas I wonder how I’m going to get through it, but I amaze myself each year!

I see this as further proof that my old boss at my previous workplace was wrong. He turned a blind eye to disability discrimination and bullying by my manager, who constantly shouted at me and called me names. My boss defended her actions, claimed to be “understanding and nice” and said that no one else would employ me. It was so satisfying to prove him wrong. This experience also taught me something about people, and that if someone claims they’re a “good person” that could actually be an alarm bell.

A big part of my job is coping with people. I do feel anxious with customers sometimes, for instance during the Covid restrictions if someone wasn’t wearing their mask properly or didn’t respect social distancing rules. I found ways to cope either by amusing myself with thoughts and stories in my head or by having a laugh with colleagues, which is good for morale.

There’s some flexibility at work, which is also helpful. I’m in charge of the freezer section and this requires some flexibility from me in terms of when deliveries are coming in, so equally now that I’ve built trust with the team and my managers, there’s a bit of flexibility for me too. I’m generally very punctual, but if I come in a bit late, for whatever reason, I can work a bit later to make up the time.

My main tip to someone employing a PDAer, or any neurodivergent person, would be not to make assumptions or believe what Google tells you. Everyone’s an individual. Ask the person about their differences and how things impact them. Also allow access to a safe space and build in some down time – in my previous job I was just allowed one short break to grab a sandwich, which was 15 minutes if I was lucky, so my half-hour tea break and my full lunch hour at Waitrose feels like a luxury!

I'm really happy in my current job, but who knows what might happen 5 years from now? I like helping people and love driving, so who knows, maybe a future as a driving instructor? I think I’d like any future role to be fairly hands-on with plenty of autonomy.

Masking

I definitely used to mask. I really liked Spiderman when I was younger and the concept of adopting a different persona, becoming a different person altogether and doing things the ‘other you’ wouldn’t be able to, was something I could really relate to.

I don’t mask now – although I do tone down my swearing in front of customers for example! I’ve embraced the fact that I’m a bit eccentric. It was the worst thing ever to be thought of as the ‘weird one’ at school, but now I quite enjoy it.

It’s a bit sad, but it seems that it’s more socially acceptable to be the eccentric one rather than the one on the autistic spectrum. I find that people, teachers mostly, automatically infantilise you when they know you’re autistic. Generally I don’t tell people I’m autistic, certainly not until I know them well and trust them.

I suppose adopting this eccentric persona, telling jokes and making people laugh, is masking to a degree, but I think it’s a good coping mechanism and I’m happy that it makes other people feel good.

I really enjoy writing, and for years this has been an emotional outlet. I write stories interconnected by various characters, including Michael and Scott, who also link to me and masking.

Michael is like my superhero persona, kind of like Batman, with a pretty dark past and his own controversial moral code, but his public ‘Bruce Wayne’ image is a mask (so I’m the mask that Michael wears). Scott is like my Spiderman persona, where a nerdy, shy teenager Peter Parker puts on a brave wisecracking mask in his superhero mode (so Scott is like my mask). In other words, Spiderman puts on a mask to be a different person, whereas Batman puts on a mask to be his real self.

As a child I could relate more to Spiderman/Scott, but as an adult I can relate more to Batman/Michael. I know some parents worry about their PDA children and role play/fantasy, so I think it’s very important to point out that I’m totally aware of the difference between reality and fiction! For me this ‘masking triangle’ in my writing is a way of exploring the different aspects of me as a person in a safe environment, plus I can write some good stories with it. And I love the superhero analogy because it’s a perfect literal interpretation of the masking metaphor.

If your child likes writing and they write some controversial material, I don’t believe any subject should be off-limits because it can be a window into their mind, and a perfect opportunity to broach certain subject matter in order to help them.

School

One of the reasons I like to share my story is so that younger PDAers and their families know that things can turn out OK, though I do understand that everyone is an individual and not all PDAers are able to work.

Like many PDA individuals, school life was tricky for me. I was removed from several schools, and because no local school would take me I was moved to a specialist residential setting over an hour’s drive away from home aged 11. This was a new experience for me and I was a new experience for them! The staff were all very patient, and the school was in a very rural setting with lots of outdoor space that helped. It generally felt less like an ‘assembly line’ than mainstream school.

In Year 7, I was very classroom-phobic and would often run from lessons to my bedroom, where a TA would come and gently try to coax me back. The subject I skived from most frequently was English, which is ironic since I now enjoy writing and find it an emotional outlet (see above for more detail). The teacher was totally focussed on my handwriting, which is still lousy, rather than focussing on the content of what I was writing. I found this really frustrating.

I went through a phase of feeling very angry around 14/15. The school staff helped me with this, lots of them were into the same things as me and helped channel my interests and my vivid PDA imagination to tune in to happier thoughts – for instance I was very into Harry Potter, so one guy who also read the books used the idea of the Dementors and the Patronus Charm to help me with managing my emotions. For anyone who isn't familiar with Harry Potter, Dementors are dark creatures whose very presence forces people to relive their worst memories and sucks out all the happiness around them (the author has said they're a metaphor for depression). And the Patronus Charm is what repels them, but in order for it to work, the caster of the spell needs to think of a powerful and happy memory despite being in a sea of doom and gloom. So basically thinking of positive things for me is a coping mechanism in tough times.

Independent living

After school I went to a specialist residential college, and then a further education college nearer home, before deciding that I wanted to work rather than continue with any more academic studies.

Life experiences have taught me a lot - I’m able to cope with so much more now and have also learned a lot of restraint. The 18 year old me wouldn’t have been able to cope with the demands of work. At that time PDA didn’t mean much to me either, but things began to slot into place in my early 20s.

I feel it’s important to let young people experience things, not to shelter them too much. But equally it’s important not to have specific milestones or push too much – encourage a sense of drive but not to anyone else’s timetable!

After leaving residential college, I was living with my girlfriend at the time who was also autistic, and we had separate and joint support workers from a national care agency. I decided to stop my support with them because I felt that some of the workers, who were very used to dealing with more needy service users than me, were encroaching a bit too much into what should be my decisions to make. My Mum suggested I give Mencap a try instead, and I met an absolutely brilliant support worker Sara who was a real God-send, really going above and beyond. She supported me for 6-7 years with all sorts of things such as form filling and household responsibilities, she was like a PA. When Sara left, there were some complexities around funding so I just decided to get on with things myself instead of having to deal with the council, phone calls, meetings etc. It just seemed a lot easier to try and do it myself and so far it’s going OK.

I’ve also had funding for buddy services. I was a bit distrusting of anything provided through ‘autism care services’ because I felt I’d be automatically treated like a child and be matched up with someone else on the spectrum who I’d literally have nothing else in common with. So to begin with I accessed this on an independent basis with a support worker friend of my Mum’s, who’d had a tough time in his own life so was someone I looked up to for advice. We went to the cinema and restaurants; we just had some great man time. He eventually met and married a lovely lady and moved away from the area, though we’ve remained in touch.

Sara then found a local service called Halow and this has worked out wonderfully. I’ve had several different buddies along the way, my current one for nearly 5 years. They’re really good at matching you with people you get on with and at treating everyone like an individual and an equal, regardless of diagnosis. It honestly feels more like hanging out with your mates than any form of ‘support service’. Their continued support has enabled me to step further and further out into full independence, and be able to gradually deal with things like filling out important forms, tax returns etc. I wouldn’t be where I am now if it weren’t for them.

I’ve always lived in my own flat (privately rented or a council flat) with support coming in to me rather than in a purpose-built setting. Sometimes I get a bit lazy with keeping things tidy, but I never let things get too far and try to keep on top of laundry, dishes, bedding and so on. Personal hygiene took a while to get sorted when I was young, but I’ve showered every day since I was 17! I love cooking but realise that sometimes after a long day’s work it’s tempting just to put your feet up and get a takeaway, so I batch cook and freeze meals for a rainy day. I think all things like this are about recognising your limits whilst making sure your needs are met, so you put plans in place.

Friendships and interests

One of the drawbacks of going from school to school in different areas is that it’s difficult to make friends, especially when it’s hard enough when you’re a ‘misfit’ for want of a better word. But having said that, I’ve maintained a small circle of friends over the years. I’m a firm believer in 5 close friends over 100 people you barely know. My closest friend I’ve known for nearly 12 years now. We had a relationship for a year in the middle of it, broke up and we’re still really close. Where would I be without her?

I have some friends from work and also a group of friends who I met at a music festival - they’re not local so we generally only meet at events, but when we meet up we have a laugh and tell each other the most savage jokes and it’s like no time has passed. It’s amazing to be part of that.

Most of my social contact is online. I’m cool with that because I don’t do small talk very well and I get easily bored by conversations at gatherings. I tend to hang more with people who I have common interests with (rock music, movies, guitar playing and driving) and share a similar (dark!) sense of humour. I guess it’s true when they say broken people gravitate towards other broken people, most of my close friends have been through hell and back. I’m a bit weird, but then so are my friends, and that’s how I like it.

As explained above, I enjoy writing. And one thing I love doing is just driving. Three years ago, with the support of a gentle, compassionate instructor, I passed my driving test on the sixth attempt! He really was a Godsend in my life as well. Having your freedom to travel in your own car is one of the most empowering things EVER. It’s not just my mode of transport, it’s something I love doing even if I’m not into fancy or fast cars. It’s like a driver’s equivalent of being a foodie. It’s not a means to survive and refuel, it’s something I love and savour. My ideal holiday would be a road trip through America and visiting filming locations for various movies.

 

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