At 22, university student Josh Muggleton is a specialist on the subject of Asperger’s Syndrome – such an expert in fact, that he diagnosed himself when he was just 9 years old.
Raising Martians – from Crash-landing to Leaving Home is Josh’s first book, and was written for parents of young people on the autism spectrum who may sometimes feel that they are raising someone from another planet – someone who speaks a different language and sees the world differently from most other people.
In this interview Josh reflects on how the “martian” analogy resonates with him and his own experience of growing up; shares his thoughts on some of the biggest challenges and advantages of having Asperger’s Syndrome; and talks about the process of becoming an author what’s in store for him – and his readers – in the future.
You’ve written a really perceptive book about what it’s like to grow up with Asperger Syndrome. When did you first start thinking about writing the book, and why?
Back when I was at Secondary school, I was having a really tough time, as I am sure you will read. One evening I remember having a minor meltdown about teachers wanting me to change how I did my homework. I needed to do my homework at school, on the day it was set (which sometimes meant rushing it), so that it was done and I could forget about it, and not have to do it at home. This understandably annoyed the teachers a little, and they wanted me to spend more time on it, and do it at home.
I spent a good hour that night trying to explain to my parents the way my mind worked. Why, for me, I had to stick by the set of rules I had built for myself. The world for me was just such a scary place (and still is in many ways), and the only way I could deal with it was to make rigid rules that I had to follow. The rules kept me safe, they gave my world an element of predictability, and a set script for how to act. Changing when and how I did my homework meant bending and breaking these rules, which I simply could not do. At the end, I remember Dad half joked that I should write a book on how my mind worked, and that was the first time that I seriously contemplated writing a book.
Over the years I made one or two attempts to write a book, but none got very far. However, at the same time, I was giving talks on Asperger Syndrome. Initially they started out as just being about me, and my life; however, as time went on, they became more about Asperger Syndrome and High Functioning Autism in general, and I found that as my talks expanded in their content, so did my attempts to write a book. Equally, I was getting a lot of people at my talks asking me if I had written a book that they could buy. Eventually, I decided to get serious about the book, and fill out a book proposal for Jessica Kingsley Publishers. A few weeks later, I met one of their editors at a conference I was speaking at, and tossed some ideas around, and suddenly, I felt I had a book to write!
Have you found that it has changed as you’ve written it, and if so, how?
Yes, definitely. Initially, I set out to write a comprehensive guide to Asperger Syndrome for parents, professionals, teachers – everyone, really. However, as time went on, I found myself writing more about childhood Asperger Syndrome, rather than Asperger Syndrome in general, which I suppose is natural – it is what I know! I think it may also be why the book is aimed much more at parents, and to an extent teachers, than I originally planned. These are the people who interact with young people on the spectrum most, and so it only makes sense that what I write should push me towards writing for them.
I also broadened it out in some respects. In writing the book, I spent time looking for lots of nice examples and anecdotes, and I often found them in my two brothers, Jack and Jordan, who both have (very different presentations of) medium to high functioning Autism. This led to my writing not just about Asperger Syndrome, but also about the High Functioning end of the Autistic Spectrum.
Looking back at the book now, in the three years since its first conception, it has developed so much, and it has been hard to let it go. I could easily write another few chapters about what I am learning and understanding now about myself and others on the Autistic Spectrum. Sending off the final version was surprisingly hard to do!
What would you most like people to learn from reading it?
This is the sort of book where I really don’t mind what people learn from it, although I hope they learn a lot. What I really hope they take from it is understanding.
I have learned that Hydrogen and Oxygen make water, but I flunked chemistry, and so I really don’t understand it. There is lots of information in the book, and I really hope that people take that on board, but to me, what is more important is that they gain an understanding of, and an insight into life with Asperger Syndrome. If you understand someone with Asperger Syndrome, then knowing that it is named after Hans Asperger is redundant. While that sort of information might be interesting, it is far more useful to know how the person with Asperger Syndrome thinks: what he or she might find hard and why, what things might set them off, and what things will calm them down, what things they will be really good at, and what things they might struggle at.
It’s got a great title, and of course the Aspie/Martian resonance is one everyone on the spectrum recognises. I wonder if you could say more about how that feels in everyday life?
Thanks, my Dad came up with that one.
I think the Martian thing is a two way street. On the one hand, yes, for someone with Asperger Syndrome, it sometimes does feel like you are an alien. I remember back at primary school, I saw all the other kids playing, and I honestly thought they were psychic and communicating through some form of telepathy. I saw how one kid would smile, and glance in one direction, and his friend would break into a bigger grin, and suddenly they would be running off together up to some mischief. I saw the smiles. I saw the eye movements. I saw the running. What I couldn’t do was to perceive the underlying communication that went on within those simple acts. It does make you feel very different, and very alien. In my talks, I often describe it as going to a ball all dressed up in a tux, and finding that everyone there is in a tracksuit. You feel out of place, awkward, and often very conspicuous. It is why people with Asperger Syndrome are such good mimics – we learn to take our dinner jacket off, loosen our bow tie, unbutton our top button, etc; but we are still different, even though we try to dress down to match everyone else.
While this is true of people with Asperger Syndrome, I think it can also be true for some parents. Every parent is different, and you cannot generalise; however, I have had several parents come up to me saying how, when their child was given the diagnosis of Aspergers Syndrome, it felt a little like an alien had crash landed into their lives (hence the title). This is not to say they do not love their child, of course they do. However, when you get that diagnosis, you can take the baby manual and tear out half the pages in it. This will not be like the baby your sister had, or like the baby’s older sister. The unflinching fact is that your baby is different, and when parents first hear that, it can be taken as a very negative thing. He/she is different, and every parent wants their child to be normal. However, difference does not have to be negative. I love my diagnosis (most of the time!). It makes me who I am; it allows me to see things in a unique way (not to mention giving me a part time job!). The title Raising Martians, From Crash Landing to Leaving Home, is my attempt at taking a positive spin on that moment when you realise that your child is different. You can raise a “Martian”. While you may feel like something has just crash landed into your life, there is a future. Yes, it might not be the same future as everyone else (he might take off in his rocket ship), but it can still be a valuable, productive, and full future, and there is nothing wrong with that.
What would you say is the most important thing for parents to know about how to deal with their child being bullied?
I think the most important thing for parents to know is how important it is to keep up positive and productive relations with the school. The school has the responsibility to deal with all bullying, and it should be done every time without hesitation. However, when it keeps happening (as is sadly often the case with children with AS) it can feel like the school isn’t taking any notice. Sometimes that is the case, but most of the time, the reason is that the teachers are limited in their ability to deal with it, either through lack of evidence, or through what they can actually do – you can tell someone to be nice to someone else a thousand times, but it does not necessarily mean they will do it. It is easy to become frustrated at the school (I know as a child, I was!), and it is easy for frustration to turn to anger. However, keeping positive and productive channels of communication open with the school is far more valuable. This is not to say parents don’t have the right to be frustrated or angry, but sometimes, with the best will in the world, teachers, for whatever reason, need some help. In my personal experience, the help they need is for it to be taken to someone with more authority, who has the time and power to implement strategies such as safe rooms, or student monitors. Whatever it is, nine times out of ten, working together is far more effective than working against each other.
On publication day, you’ll be well into your final year of a psychology degree. How do your fellow students react to having an author in their midst?
It doesn’t come up often. I don’t make a big deal of it, and with our final year dissertations coming up, not to mention exams, we have a lot of pressures on our time! However, when we do talk about it, they are really supportive about it. They are great at letting me bounce ideas off them, or to have someone to moan at when I don’t know what to write next. Some even go a bit further than that. My friend Stacey is very gifted artist, but very shy about it (she never shows her art to anyone), and so I was very touched when she agreed to design the artwork for the book. Although even now she gets embarrassed about it – she might not be able to go into a bookshop for a month or two!
They are also really supportive of my next book. They have offered to read chapters of it and make comments. The next book is a little more scientific, and so it is great to have a small team of top grade psychology students looking at drafts to ensure that it is all top notch. One in particular, Becky, is quite the editor (it runs in her family), and helped me craft my first few chapters for the proposal form, and has given me some great feedback on structure and wording.
What do you plan for your next book?
I have just signed a contract with Jessica Kingsley for my second book, which I am really excited about (even more so than I was for the first book, which is quite some achievement!).
There is a wealth of scientific literature out there on Autism and Asperger Syndrome, but it is so hard for the layman to access. To read a psychology paper in a scientific journal, you need a good grasp of statistics, methodology, the philosophy of science, not to mention an advanced understanding of psychology, and multiple subscriptions to those journals! I am hoping to use what I have learned in my degree to write a book that makes all this great research accessible to parents, teachers, and people on the spectrum. I want to not only just get across the research, but also my passion for science and discovery, and how useful it can be in society.
I will be taking a look at different theories of autism, and the (often contradictory) evidence for and against them. I will also consider research looking at different aspects of cognition in Autism – Memory, Problem Solving, Attention, etc, as well as things like sensory issues – in short, pretty much anything where there is great interesting research on autism. Most important, I will be taking an unbiased look at the research. Often when academics write about research, it is about their own research, and they are trying to support and defend their theories. I want readers to make up their own mind as to what this research means. I will also consider what the research means for people in real life, and how it can be applied.
What do you think is the most challenging thing about having AS?
For me, the most challenging thing tends to be what I refer to as primary socialisation. Primary socialisation is where you do an activity specifically to socialise – parties, clubbing, etc – as opposed to secondary socialisation, where socialisation is a by-product, such as at work. I have made most of my friends from either the Entertainments crew, who do all the technical production and organisation behind events at the union, or through the psychology lab, and both of these are forms of secondary socialisation. However, when it comes to going to the pub for drinks, or round to someone’s house for a meal, I always get slightly more anxious, as the speed, level, and rate of social interaction is so much greater. I enjoy seeing my friends socially, but I still always have to be on my toes a bit. It is like running 10 miles, as compared to walking 10 miles.
That said, this being my last year at university, I am making an effort to do more primary socialising. I have made so many great friends here, and I am acutely aware that next year we will be scattered throughout the country, and probably won’t see each other very often. It was hard for me to make friends in the first place, and I am not relishing the prospect of having to do it all over again. However, needs must, and so I want to enjoy the remaining time I have with my friends now to the fullest.
And the best?
That is actually quite hard. It is easy to identify the problems associated with having Asperger Syndrome, as they are all so well documented. The positives seem to me to be more subtle, and more interwoven with personality, I think. However, probably the best two things for me are that it allows me to speak in front of hundreds of people, or to live TV cameras, without getting nervous, and that it has given me a real interest in and drive to continue studying psychology, and what makes us, US.
When I do talks to groups of people, I see audience numbers in the opposite way to most people. To me, a big group is great, as it then become a group of people, not a collection of individuals, so can treat them as a group, rather than individuals. This means I do not have to focus as much on their individual body language and facial expressions, and try and interpret these. I can look at collective fidgeting, people dozing off, people scribbling down notes etc, to gauge the audience level of interest, which is easy for me, and far less nerve wracking than trying to `read’ individuals. With a small group, I have to engage with them on a more individual level, looking at body language, facial expressions, etc, which is a far more demanding task. With a smaller group, it also means I get a little more anxious, as it is like talking to people, rather than just talking, which is what I do with a big group.
My Asperger Syndrome allows me to see people’s behaviour from a very different perspective, and I find it absolutely fascinating. The nature of the human brain and its relationship with the mind is one of the biggest questions in science; we don’t really understand how it works. Being able to tackle such a meaty question, by analyzing the nuances of people’s behaviour, or by studying the mindboggling complexity of the human brain is absolutely brilliant.
I am hoping to make a career out of psychology. While it may seem like the worst possible profession for someone with Asperger Syndrome, I am hoping to become a Clinical Psychologist, and I will be looking for Assistant Psychologist posts starting this summer. I have always felt that, at the end of the day, the only thing that really matters is whether you made a positive difference, and the best possible way to do that is to make a positive difference to someone’s life. I feel that Clinical Psychology will give me that chance. I have already spent two summers working as an Assistant Psychologist, which I have found both fascinating and hugely rewarding. It has also allowed me to prove to myself that despite some of the difficulties inherent in having Asperger Syndrome, I can do the job – especially when it comes to psychometric assessments, and understanding how someone’s mind/thought processes work. However, that is all a long way off – I have to graduate first!
Thank you so much, Josh – we really appreciate your taking the time to talk to us about all this. Looks as if the book will be a great success and well worth all your hard work in the number of readers it will help. We are looking forward to working with you on the next one. Good luck with your final year at St Andrews!
Copyright © Jessica Kingsley Publishers 2011.