Luke's Story

Taheera Khan

Date: 20/04/22

Luke is a governor at Portfield School, a carer to his mum, and works at a National Trust café.

In addition to caring for his mum, who is physically disabled, he spends time with his grandmother twice a week, talking to her, keeping her mentally active and doing little things for her when he gets the chance.

When he’s not busy at work, he likes to relax by playing games and spending time with his family and friends. He describes himself as a bit of a ‘political activist’, and enjoys watching sci-fi in his spare time, namely all the recent Star Trek and Star Wars shows, amongst some other things.

People often view him as driven and focused to be doing what he’s doing, but he always bears others in mind – he cares about those around him; how they are, what they're doing and how he can help them.

On his autism, he says, ‘My autism, as it's diagnosed, is on the Asperger spectrum, so there are some social situations where I just struggle with how people interact and the way people do things, but what it means to me, it means that there are some situations that I find challenging, the way that people go about things sort of confuse me from time to time, and I struggle with that and how I process that with my emotions and feelings.’

He was diagnosed over 12 years ago when he was experiencing mental health issues, and it was through his mental health treatment that he got diagnosed, which helped him understand himself better.

At first, he was a bit shocked, but he recounts a teacher at the time telling him, ‘this isn’t the be all or end all, this is just a part of who you are and these are the challenges of who you are, but don’t let anything define you.’

It did give him an insight into himself and who he was; things started to make sense as he looked at others around him who were also autistic. However, he has regretted telling some people about his autism in the past as they have reacted negatively. So over time he has learnt to be a bit cautious about who he tells.

If there was greater understanding, sympathy, and awareness of those on the spectrum and the challenges they face in their lives, he feels the world would be a much better place. He emphasises the importance of being kind, which he always tries to practice in his own life.

He strongly believes there does need to be a gentle challenge to say to people, ‘autism isn’t just one thing, it’s across a spectrum. It’s not just one thing, it’s not just one person. It’s not just one speciality and another speciality over there, it’s a part of people, and it’s of the challenges of what they go through.’

Just because he has certain challenges doesn’t mean he should be boxed into specific labels – every autistic person is their own individual. In past experiences, Luke has found it frustrating when people have pigeonholed him, and his autism as just another learning difficulty.

He adds, ‘I have challenges, not in terms of with my autism, it’s part of my personality, it’s part of who I am, but don’t stereotype me, don’t pigeonhole me, don’t think I’m stupid and don’t treat me any differently. Treat me as the person with the challenges that make up my personality.’

In every-day life, he just wants to be treated like a ‘normal person’. If things seem a bit odd, he wants people to just ask if everything is okay and explain what’s going on. In some instances, he doesn’t realise if his actions upset somebody because he genuinely doesn’t realise or understand what was going on.

There can be stressful situations in the workplace where he’s doing all he can, pushing up against the boundary, and he just wishes people would ask him about the challenges and difficulties he has before he then internalises and thinks he is the problem.

Building a sense of security is vital to his progression in the workplace. He mentions Richard Harriott and Louis Baynes, with whom he has developed a strong working relationship, working hard for them because they treat him well. They also give him the challenge and the understanding to know that from time to time there may be problems with other members of the team, but it can be worked through as a team.

When asked what he would say to employers, he replies, ‘Don’t underestimate them, pure and simple. Don’t pigeonhole them, don’t box them into one type of job unless they really like doing that type of job, get a grasp of the person. If you think you can challenge them to grow and do better, do it.’

He adds, that due to poor past experiences, people may be reluctant to disclose their disabilities to employers. But by creating a sense of security, trust and fairness, employers can create an environment where people feel comfortable coming to them and sharing their challenges.

Autistic people like Luke can be very valuable across many fields of work, with skills like forward thinking. By giving them the opportunities, they will try to do what they can to help, and look towards the bigger picture.

For those who have been in similar situations and are struggling with their mental health, he wants to emphasise there’s always good people out there - it’s knowing where to find them and building up the security and trust with them.

He advises those who have been recently diagnosed, saying, ‘It is a part of you, it defines parts of who you are, that’s what people will tell you. But still, be yourself, still, it’s a part of who you are. It’s the challenges of being you. But don’t let anyone pigeonhole you, tell you you’re stupid or say that you’re less than you are because they are wrong.’

While it can be daunting, just go about being yourself and try to deal with the challenges ahead. Everyone has their own challenges and you will find ways to guide yourself through it and build on the strengths of others around you to get through it to grow and be better.

Luke has been a governor at Portfield School for almost a year and a half already, after initially being introduced by Malcolm Farrell, the Chair of Trustees at Autism Unlimited. As a governor under 30, he doesn’t fit the common stereotype, which tends to be someone over 50, parents with kids at the school and nearing retirement, with lots of experience. But he would encourage any young person looking to become a governor to reach out to someone like him and take governor courses at college or sixth form - Luke himself was a student governor at college. The training you gain from being a governor equips you with learning that can be applied to many workplaces moving forward.

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