Asperger’s meant a childhood blighted by anxiety and isolation, but today I help others cope with the strain of being “different”
It’s as if my head has a large ill-fitting fan installed in it and I can feel its blades grating against the inside my skull. My stomach keeps clenching and my mouth has that funny taste you get just before you’re sick. I am dizzy and lightheaded and my legs feel hollow and bendy, like straws.
It was worse last night. Although I was tired, my eyes seemed to be forced open constantly and I needed the aid of alcohol to get off to sleep. Today, I’m a mixture of excitement and anxiety. I’m going to a flat viewing and I am going to have to feel like this for at least two hours. It’s just as well that I found out about it last night, otherwise I’d be a wreck.
As someone with Asperger’s syndrome, I am no stranger to anxiety. It causes me to dig the toes of one foot into my other foot and the pain this creates provides a pleasant break from the anxiety, albeit a temporary one.
For more effective relief, I find that the best thing for anxiety is to be distracted by one of my interests, and it helps greatly when someone else is there to help me focus and ask me questions. As a mentor to others on the autistic spectrum, I have found that this strategy seems to help others too. It is very important to concentrate on the person’s most intense interest and to ask intelligent and precise questions, and ones that elicit more than one-word answers. For example, a question such as “tell me about the Powerpoint presentation you just made on cats” will tend to work well, especially if the individual is also prompted to be expansive in his or her answers by the use of supplementary questions. By looking at the person, you’ll be able to see when you’ve hit upon a topic that engages them. Once you have, you should be able to guide them away from their anxiety, go deeper into the topic, and hopefully flip their emotional state to start talking about an aspect of the topic that excites them. It is important to remember, though, that the cause of the anxiety will still need to be dealt with.
Most people on the autistic spectrum experience the same range of emotions as everyone else, but these feelings can occur at extremes of intensity or frequency. Difficulties with communication often prevent those with autism from explaining their emotional problems. It is also hard to process what is happening in social situations if you are unable to put yourself in other people’s shoes. Many of those on the spectrum feel very alone. These feelings of alienation can lead to serious issues with confidence and self-esteem and the world can seem like a very unpleasant place.
Trauma in the classroom
When I was at school, my problems with anxiety were much greater than they are today. They caused serious diarrhoea, which was painful and inconvenient, and my trips to the toilets seemed to serve as invitations to others to bully me, lock me in and stare at my vagina.
When my periods started, I was awash with hormones which made me grumpy, depressed, volatile and argumentative. I understand that menstruation and sex are embarrassing topics for some, but I would have benefitted greatly from advance warnings about their emotional effects, as well as about the mechanics of what was about to happen to my body.
I felt that sex education wasn’t relevant to me because nobody would ever want to have sex with me, as I didn’t really have any friends. Part of the problem was that I didn’t really understand how friendship worked or how schools operate on a social level. In many ways, schools are microcosms of society; there is a pecking order and if you are different or don’t fit in you might get bullied or ignored, not necessarily because you aren’t the sort of person people would like to hang out with, but simply because of the unwritten social rules. For children on the spectrum, this needs to be explained.
For children and young person with autism, it is also important to understand that relationships build up; they are not created fully formed. Discovering that people generally have several partners before they get married and that relationships have to be worked on are important lessons to learn. They also teach you about and promote body ownership: the idea that you own your body and if someone does anything to it that you don’t like, you have the right to tell them to stop or report them if they persist.
Sometimes, children and young people on the spectrum need to be taught things that may seem obvious to others, like simply taking a step backwards if someone in the corridor is touching them in a way they don’t like. As discussed by Dr Alexander Gantman and Dr Elizabeth Laugeson at UCLA, it can also be useful to teach those on the spectrum to respond with learnt responses in particular situations. For example, if someone calls you an idiot, you can just respond with a quick “whatever” and a shrug. Body language and tone of voice can be so important as social deflectors and they can be taught effectively for specific situations.
The pain of rejection
When I was about 15, I thought that I was the only person in the world who had a crush on a teacher, who liked computers and who didn’t say the right thing. I thought that nobody would love me when my parents were dead, I felt stupid and I was ashamed of my SEN background and that I found things so hard. No-one ever told me to think otherwise.
The only differences between me and many others on the spectrum are that I have gained some self-awareness, mostly from talking to my parents and thinking a lot, and that I didn’t put up with other people’s attitudes. At school, for example, I walked out of a teacher’s office and nearly got suspended because I felt she wasn’t taking in what I was saying. I also quit a job because I hated it and decided to study at another college course instead – I simply looked for a positive step forward rather than staying where I was. Of course, this did mean dealing with great anxiety, but there is a difference between managing the effects of a snap decision you’ve made yourself and trying to handle pressure to behave or go in a certain way which is imposed by others. You have to want to face your problems and deal with them if you want to be successful, and it can take time to get to that point.
I don’t want to make this sound easy because it isn’t. As I often tell people, a troubling experience in life is a bit like diarrhoea – it’s unpleasant, painful and you can’t stop it, but it will end and that’s the important thing to remember.
Since I became self-employed, my sleep problems have not been as bad as at other times in my life. I do still struggle with it from time to time, but I’m more in control of my day now. Sometimes I feel as if all the different aspects of my life are like big shapes blocking my mental vision. This makes me anxious and I have to take plenty of breaks and spend time alone (though time with others is also important for me). I know that I have touched the lives of many people through my work, but there are still times when I feel like a failure. In a way, feeling anxious and rejected by the world are natural feelings for me.
At school, rejection and isolation were almost a daily occurrence, like being the last to be picked for a team. I remember the loneliness of going on a school trip on my own, and how it left me feeling scared and vulnerable to teasing and bulling. I remember getting an activity day letter and realising that there was nothing there I wanted to do. I thought there was something wrong with me and nobody told me that it was OK not to want to do the activities, that it didn’t make me sad or boring, or mean that I wouldn’t have friends; it was just that activity days could only include a certain number of subjects and my interests weren’t there.
Now, as a 25-year-old, I think I’ve figured it out: if I had had friends, anything could have been fun.
A helping hand
Though my school days were often far from being autism-friendly, there are many things that can be done to help people in a similar position. Buddying can work really well if you take the time to find out what the child is interested in and pair him or her up with someone who shares the same passions. An older buddy with similar interests, who is also prepared to hang out with the child, especially at times when a partner is required (such as for school trips), can be particularly effective. On the one occasion that this was tried for me, it really did work.
It is also important to clearly define relationships with teachers and other staff for those with ASD. Be explicit in explaining the boundaries. They should know that staff care about them but it is crucial that they do not think of them as friends.
Look for ways to include children with ASD in the classroom. Try and find out what their niche is and what they are good at. If a child is great at graphs, typing or spelling, put him/her in groups where s/he can use these skills and interests, and where the whole class can see what his/her abilities are. This can go a long way towards making the child feel wanted.
Proper planning for transitional stages in life can also make a massive difference to children and young people with ASD. A formal transition plan could, I believe, have made my entry into the big wide world beyond school so much easier and less traumatic.
Finally, although this article focuses mainly on anxiety and social relationships, don’t forget that autism affects so much more than this. Inevitably, you will only be able to really help the individual child as best you can if you take the time to understand what makes him or her tick as an individual.
When I think about how I felt during my time at school, and where I’ve got to today, I feel very lucky. My work makes me feel wanted and gives me a real sense of pride in who I am. It has not been easy to reach this place in life and I know that I’ll have to carry on working hard to keep it together and to continue growing as a person.
Robyn Steward is an artist and a specialist Asperger’s trainer, consultant and mentor. She has Asperger’s syndrome and is a well-known public speaker on ASD: