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PJ. Hughes – Self-Advocate and Writer

“Being diagnosed turned my life the ‘right way up’”

PJ Hughes lives in Sheffield, England. PJ speaks and writes about his experiences of having Asperger Syndrome, having been diagnosed in 1999. In 2007 PJ published a book titled “Reflections: Me and Planet Weirdo”, an exploration into the world of autism from the point of view of someone on the autism spectrum. He is currently studying a French Language and Culture degree part-time at the University of Sheffield.

Autism-Europe: You received your autism diagnosis as an adult in 1999. In what way has your life changed as a result of this?

PJ. Hughes: In some ways, it has turned my life the “right way up”. I have described my life prior to my diagnosis as like living in a walking coma where things didn’t quite make sense and now, with relevant actions and, where relevant, working with others, I have been involved in the both the world of work and study with mixed fortunes. I’m not entirely sure how much for the positive, as I do feel there is a distinct lack of understanding of the subject. However, the support I am receiving at University at the moment is positive.

AE: You are a writer and, above all, explore the subject of autism from an autistic viewpoint. Do you think this autistic viewpoint is something that is currently missing in autism literature?

PJ: I certainly think that there could be more from the autistic viewpoint, not just based on the individual’s experiences, but a broader discourse of issues surrounding the condition. There could be more said on the diagnosis process from an autistic point of view, various education techniques both autism oriented, such as working on social interaction, and more general academic techniques (school or university) or for the workplace. I also believe more information for non-autistic people from the autistic point of view would be good as social interaction and communication are two-way processes and it would be unfair that one side should do all the work!

AE: How do you think we can encourage more autistic people to share their experiences?

PJ: This is a difficult one. In terms of my own experiences, I have learnt to both live with Asperger Syndrome and work with it. One way may be an analogy of learning to develop my essay writing skills, which was through subjects I am interested in.

I felt that my initial essay writing was not very good because the areas, at school predominantly, I found hard to connect with. So, when I was diagnosed in 1999, I went to study part-time at college. I did A-Levels in Film Studies and Music before moving to languages (Italian, Spanish and French). All these subjects interest me. I also studied for a Postgraduate Certificate in Asperger Syndrome at Sheffield Hallam University. As such, it is relating to something that you can relate to. For me, I would like to continue with my work on the autism spectrum, and develop writing about cinema. I really enjoy European cinema.

As such, one possibility to encourage more autistic people to share their experiences would be through starting with something that they enjoy. After all, the subjects I chose when I returned to college and university are areas I am particularly interested in and developing skills for me tends to easier through relating them to things of interest as a starting point.

AE: You’ve written a book called “Reflections: Me and Planet Weirdo”. Could you tell us a bit about this book and what the premise is?

PJ: This book is part an insight to my life and experiences and an overview of the Autism Spectrum. While it may be beneficial for those who are new or unfamiliar with the subject, I also hope that it would also be useful for a wider range of people. Naturally, I wrote this from an autistic point of view.

AE: Are you planning to write any more books about autism? If so, what subjects are you planning on exploring?

PJ: Yes, I am currently writing about my experiences of good and bad practice of my varied experiences through life whether at work or education or anywhere else. A big problem I have found is that people think they are helping, but they are not. More often than not, such people make it worse! As such, I hope my own experiences of what has worked and what doesn’t can help in improving best practice and bring in autistic people as valued members of the community. It is important to know that there are many perspectives and developing relationships in whatever form, whether personal or professional.

While other autistic people do speak about their experiences, I really feel a more rounded approach can be beneficial.

AE: What advice would you give to others out there who would like to follow in your footsteps and get into writing?

PJ: I would say go for it. Write about what you know and about what you’re interested in from your perspective (while noting about other perspectives as there are many experiences and no correct answer).

AE: You have been a trustee at the National Autistic Society (a member the organisation’s board given a say in some of its key decisions). What area(s) do you think are particularly important to advocate for to bring about policy change?

PJ: I think there is still a lot to do. Ranging from childhood and lifelong education and learning to old age. I think it is vital to include a range of experiences and knowledge. I believe it is important to have the personal experience of those on the spectrum whether verbal or non-verbal, male or female, young, old etc. I feel it is useful to have the professionals’ knowledge and understanding informed by those with the personal experience. Looking at living and working with it and noting that one cannot make sweeping support structures because what works for one person may not necessarily work for anyone else.

At the moment, I am looking for a new place to live because I have severe arthritis in my hip. So good, appropriate housing is important. My mother has been diagnosed with dementia. I not only talk to her every week, I regularly talk with a family friend. This is something I find very stressful to work with and I’m not finding this easy!

I feel being listened to and being supported in a way that works for the individual. In stressful situations, things like being able to have a good scream etc. would be useful! After all, nothing beats a good scream! I also feel that living with and working with the condition is a good philosophy for me. I would like to think that this could benefit others, even though it could be more challenging living within a broader dynamic and there is some kind of support and understanding around this.