Young people with ASD need clear information and practical support to deal with the complexities of modern social interaction
Like most teenage girls, I wanted a boyfriend. But most guys my age were either not interested or rejected me. When I was 17, a guy told me: “I don’t want to be your boyfriend because you’re disabled, and there are some things I wouldn’t want to do for you”.
I have Asperger’s syndrome, an autistic spectrum disorder (ASD). In recent years, there have been many initiatives to get kids with ASD into social groups. This is all well and good, but you also need the input of neurotypical people into these groups, to provide every-day information and understanding that many young people with ASD lack. So much that relates to social etiquette, for example, is very generational and geographically location-specific, and it is very hard for many of us to pick up.
A lack of this kind of understanding made me vulnerable. There are a lot of things you need to know when relationships are in the air. What is meant by a come on? How do you know when someone is coming on to you?
You also need to understand how to get out of situations. This doesn’t just apply to romantic or sexual relationships but also, for example, to not accepting drugs or alcohol if you don’t want them. It’s all very well being told to “just say no”, but if you have spent a lot of time building up a friendship with someone and you don’t have many (or any other) friends, you are more likely to be compliant because you don’t want to lose that person.
At school, sex education never really felt like it was for me. It didn’t seem to tell me what I needed to know. Nobody told me that I could say “yes” to one kind of sex (such as oral) and “no” to another (such as vaginal). They never told me how to say “no” or how to make it clear what I was saying “no” to. Young people need to learn the appropriate vocabulary to make themselves understood. It’s the same as learning to say, for example, that you can only eat gluten free bread. If someone offered you a sandwich and you just said “no”, when actually you just needed to say that you can only eat gluten free bread, you are being denied a proper choice; no-one has explained that you are gluten intolerant, what foods have gluten in, and that there are gluten-free options.
It is important when working with people on the autistic spectrum to speak in literal terms, particularly with those who are expected to manage on their own. Indeed, many people with Asperger’s probably won’t be eligible for much support under current and forthcoming welfare reforms. Not everyone can have a teacher or caring adult whom they can trust and talk to, but everyone should have the information about what is OK and what is not OK. This information should span many areas of social and personal life. Abuse can take many different forms and young people on the spectrum who are making their way towards adulthood need to know about them.
It is important to understand that to be friends with someone you don’t need to give him/her money. It is your money, so you should choose what you do with it. While you may physically have the cash that you could lend to someone, you need to understand the real consequences of doing this. It may, for example, leave you without the means to do your weekly shop.
It is not acceptable for someone to continually criticise you and call you names. If you have asked them to stop and they do not, then this is bullying. When you ask bullies to stop, they may try and justify their actions, but this doesn’t make what they do OK
There are lots of different kinds of sex. You always have the right to say no to anything. If the person does not listen to your choice, then this is sexual assault or rape. There are also some people out there who are keen to pray on weakness. Just because you are under the age of consent, or don’t have the capacity to understand the situation fully, doesn’t mean that a predator won’t try and hurt you. Sexual predators can attack adults too, so these lessons are for life.
Many individuals on the spectrum may not be able to appreciate the consequences of their actions and those of others. They may struggle to think a situation through. One thing that everyone in schools can do is to help each and every young person to recognise their self-worth and feel confident about who they are, including any disability or condition that is part of them.
This, of course, means that all staff must acknowledge disability and understand the ways in which young people with particular conditions are affected by how others treat them. Being called a reject or a retard every day by fellow students is going to make you feel worthless. Staff need to understand the dynamics at work and appreciate that all young people want to be accepted by their peers. Without this understanding, young people are left without the vital support they need, and can be vulnerable to potentially dangerous situations.
I sometimes find that parents do not want to tell their children about their diagnosis. But Autism is part of you, like your gender or sexuality, and it affects the choices you make, particularly when things go wrong. It is also crucial that professionals are informed of the diagnosis and what it means. For example, a doctor investigating for possible psychoses may ask: “do you hear voices?” If you’re a literal thinker, regardless of psychoses, the answer is, of course, “yes”: your own voice and those of people around you. But if the doctor understands your autism and that you take things literally, she can ensure that you are not misinterpreted, and rephrase the questions appropriately. Without a thorough understanding of an individual’s diagnosis, professionals cannot make sure that they meet the specific needs of the young person concerned, and that they are involving them effectively in the matter at hand.
It is important not to breed dependency in our young people on the spectrum. We need to help them to become autonomous learners and to ask questions without fear when they do not understand. Parents need to accept that they might not always be the right person to answer these questions. Educators need to ensure that they are creating an environment in which all young people are encouraged, and given the skills they need, to make their own choices.
Robyn Steward is a specialist Asperger’s trainer, consultant and mentor. She is the author of The Independent Women’s Handbook to Super Safe Living on the Autistic Spectrum.