I was fortunate to meet Emma recently , quite by chance and after chatting for a bit, I asked if she would agree to an interview. It quickly became apparent that Emma was going to be much better at telling her own story than I could. Emma quickly dispels so many misconceptions we might have about Autism and presents a picture of her life that is compulsive reading. Her experiences have led her to write and facilitate an education programme on the subject. We hope that with Emma’s permission , you will be hearing more about her and her life in future issues.
So here it is, with thanks.
I grew up with Autism Spectrum Condition, which went undiagnosed until I was 45.
By far the most difficult thing for me is the social and communication difficulties that I have. I can get by for varying periods of time by acting and imitating but it is absolutely exhausting. Many people have described it as like being plonked down on an alien planet without a manual as to how to behave, and I would heartily agree with that. This has resulted in me having a disastrous employment history.
I had never managed to get a job from an interview but had instead always been taken on after temping somewhere, once they see how well I work. But after a year or two it really started to fall apart and I was constantly criticised and picked on for my various social blunders, but nobody would ever explain what I’d done wrong because they couldn’t imagine that I didn’t know. It was frighteningly like being in Franz Kafka’s ‘The Trial’.
I’ve been called stubborn, rude, uncooperative, inflexible, facetious, pedantic, difficult, awkward… in short, I had an attitude problem. At appraisal time I was always told that my work was really excellent but that my relations with others were unsatisfactory, so I always got a bad overall report. I couldn’t understand why I was doing so badly when my work was such a high standard, when I thought that that was what I was there for. I have been told that I sound melodramatic but I honestly felt that I was being tortured. These difficulties always seemed absolutely insurmountable and I always felt I had no option but to leave.
After this cycle repeated a few times I decided to try something different – I sold my house in Brighton and bought a house cheap enough that I didn’t need a mortgage, which meant moving somewhere a lot cheaper, and that’s how I ended up in Wales.
Here I thought I would live on the dole with no rent or mortgage to worry about and have some peace and quiet, but unfortunately the women in the dole office started threatening that they would stop my dole if I didn’t apply for the outrageously unsuitable jobs they thought I should be applying for. Eventually I managed to get a part-time job in a mail-order book shop about 5 minutes away from my house.
It lasted two years and exactly the same thing happened again, picking on me, bullying me, and I was in fact asked to leave when I enquired as to the possibility of taking 6 months unpaid leave.
So I went to New Zealand and spent 6 months completely alone out in the wilds thinking about what I could do. I knew I couldn’t go on the dole again because they would just force me back into another unsuitable job and I knew I couldn’t work. I needed to find a way to live without anyone having authority over me, in fact, I wanted to be utterly left alone. So I decided that when I got back I would sell my house and buy a campervan and live on the interest of what was left. This was before the interest rate crash so it was a lot more feasible then.
After a few months of living in a campervan, sometimes literally on the street but more often in town car parks or laybys, I realised that I still wasn’t achieving my goal of being left alone because people were terribly interested in me in my van parked mysteriously somewhere for sometimes days on end. I realised I needed somewhere I could park where nobody could see me or knew I was there. So I ended up buying a plot of woodland to hide in.
I lived there for 11 years, first in the van but I had to sell that when the interest rate crashed because it was too expensive to keep road-legal. I managed to get hold of a 30 year old caravan which had seen better days and stayed in that in the winters but for the summers I found a sunny clearing in the middle of the wood and lived there for 7 months of the year, at first in a tent but then I built a polytunnel and furnished it.
There were no facilities, no clean water, just rainwater that I collected, no electricity, just a small solar panel I bought, no toilet, no shower, no washing machine, and I cooked on a camping gas stove. It was extremely difficult to live under these conditions but as hard as it was, it was much much easier for me than having to engage with people every day.
I gradually came to realise that all my problems couldn’t always be because of someone else and that perhaps I had something “wrong” with me, and I researched personality disorders and all kinds of social pathology until eventually I came across Asperger’s, as it was called then. I knew immediately that this was me. It was as though my life had been like a page of code, it was a meaningless jumble and nothing made any sense but applying Asperger’s to the code was like a key to crack the code and suddenly everything made sense.
I attempted to get a formal diagnosis but at the time (2006) there were no facilities for adult diagnosis. It was clear to me at that time that the doctor knew absolutely nothing at all about autism, what it was or what to do about it. As it turned out, 7 years later I had to see a different doctor and whilst in there she noticed the request on my notes and asked if I still wanted it, as there was now a service. Even then it took 2 more years to get my diagnosis. I have no doubt that I could have spent the rest of my life going to psychologists and psychiatrists and not been diagnosed with autism if I hadn’t discovered for myself that that was what I had and specifically asked for that diagnosis. Nobody would ever have thought of testing me for it despite what I now know to be very typically female autistic problems, because the system is geared to look for male autistic traits.
Getting a diagnosis was absolutely life-changing. I was able to apply for PIP and a very small amount of pension that I earned in one job, which meant that I could afford to move into a rented flat. I have now sold my woodland.
My flat is absolutely gorgeous and I am very very happy there. I live what might be seen as a strange and solitary lifestyle. I only go out when I need food or to do something like this and am very happy to never ever see or speak to anyone. I spend almost all my time playing a city-building game, SimCity. I read a lot and always have several different books on the go at the same time.
Much is said about the fact that people with ASC don’t understand others but I think it’s important to point out that the communication difficulties that I experience are very much a two-way, or neither-way, to be strictly accurate, thing. To me it seems that other people have a kind of code whereby they say something different to what the words they are saying mean, and yet other people understand what they mean, whereas I understand only the literal meaning of their words.
By way of an example, something I constantly have trouble with is when someone says, “Do you want to…” whatever. I KNOW that this means, “I want you to…” or “Please will you…” but I miss it every time and say no if it isn’t something that I want to do or hadn’t even thought of. So then people are cross with me and I can’t work out why, and I find that I have been uncooperative.
This works, or doesn’t work, the other way too, I say exactly what I mean and they translate it in their head into what they would have meant if they had said that. Sometimes they even tell me what I apparently said, but translated into their words, and I say, “No, I said….” And they say, “Oh but that’s what you meant. Don’t be pedantic.”
It is an impenetrable mystery to me how other people know when someone else means what they say or not. So I find most conversations extremely complicated as I have to work out what they mean and try and reply so that they understand what I actually want to say.
Needless to say there have been many disasters, particularly at work, and now most interactions leave me very stressed and anxious as to whether or not I’ve got it right, obsessing over, could she have meant this? Did she think I meant that? Did I show enough polite curiosity or too much? Did I, in short, behave “normally”?
This anxiety is, I think, chiefly caused by the fear of not meeting others’ expectations or of being thought odd or rude. There is a unique kind of humiliation that comes with being a very intelligent person who can be so very stupid about things that other people take for granted, especially when they assume you are doing it on purpose.
Something that I find hard is when I tell people I have autism and their immediate reaction is, “No you don’t, I know someone who is autistic and he is nothing like you”, or, “But you seem perfectly normal, there’s nothing wrong with you”. I understand that they mean well and are complimenting the social skills I have learned or my acting ability but to me it feels like they are disbelieving me and it negates the huge difficulties that I have and what I have achieved just being able to speak to them.
I have heard someone say that you can’t blame all your problems on the condition but I disagree. Autism is a pervasive condition which means it affects every aspect of your life so I feel quite strongly that it does define me and if you reject or deny that I have it or that it makes any difference then I feel you are denying a fundamental part of me. It makes me me.
I have had people say to me, “Oh, you must not have it very severely” (this was while I was living hidden away in a tent!) There is an idea that if people can talk and look after themselves then their autism must be ‘mild’. I would say to those people that I got 48 out of 50 on the autism test.
My autism is not mild. I did ask a few people why they thought I was living in a tent and I had responses such as, “To be rebellious”, “To be close to nature”, “To be eco-friendly”, “Because you don’t like being indoors”, “Because you like camping”. Sometimes I tried to explain that I felt I had been driven to it as the last possible option of staying alive but people really couldn’t grasp this concept.
Something else which I have great difficulty with is sensory overload. This was hardly ever a problem when I spent all my time on my own in my wood or my flat but since I have been involved with PPF and getting out more I often become overwhelmed by too many people talking to me and too much talking to them. Also any situation with a lot going on in terms of sound, lights or movement can become overwhelming. I also don’t like being touched, to the extent that I have to cut my own hair and only go to the doctor if I’m really worried about something that seems very very serious. I find it almost impossible to be around lots of people all talking at once.
I have been told several times that I shouldn’t use the term ‘normal people’ to refer to people without autism as there is no such thing as normal. It is my personal opinion, having grown up constantly comparing myself to other people, trying to fit in with them and failing, that there is indeed a normal and I am not it.
I am so grateful to have been diagnosed because it has made such a difference and enabled me to sort my life out. I am also very grateful to PPF for giving me this chance to do something and hopefully make a difference to others. As a pretend normal person I was an abject failure but as an autistic person I’m really hoping that I will be able to do something useful with my life.
Pembrokeshire People First
ASC-US Autism Awareness and Acceptance Training
Training that has been developed, designed and is presented by people with autism.
Aim of the course:
For you to gain greater understanding of autism from those who have lived experience.
How we will meet this aim:
We look at autism from a personal perspective – and challenge some misconceptions.
We offer practical insights on communication, empathy, relationships and community.
We identify barriers people with autism face – and how we can work together to overcome them.
We discuss your particular concerns and areas of work, and what would make a difference in your practice
What People say about the course:
“Brilliant training. I feel that I have learnt a lot about autism and it has helped me be more aware when engaging with people. I found the day very enjoyable, informative and useful. Fantastic team!”
“Presented in a very friendly and professional way. Excellent speakers and their stories were inspirational. I learnt lots and will take much away from the presentation today.”
Cost: £70 per participant or £450 for a group
To Book : Please email: email@example.com
For more information: Call Pembrokeshire People First on 01437 769135 or email firstname.lastname@example.org
Courses can be run exclusively for organisations & tailored to specific needs. Please contact us to discuss.
PEMBROKESHIRE PEOPLE FIRST IS A CHARITY RUN BY AND FOR PEOPLE WITH LEARNING DISABILITY AND/OR AUTISM. REGISTERED CHARITY NO 1091201