Today, I'm talking with Sarah Attwood, the author of Making Sense of Sex: A Forthright Guide to Puberty, Sex and Relationships for People with Asperger's Syndrome. (Jessica Kingsley Publishers, 2008) Ms. Attwood has been a sexuality educator in Australia for fifteen years, and has worked extensively with parents and their preteen and teenage children.
Patricia Robinson: Sarah, your book is different than other sex education books because it's specifically written to adolescents with Asperger's Syndrome. How is the information in your book tailored specifically to those on the autistic spectrum? What do you think are the special concerns and issues of teens with autism and Asperger's?
Sarah Attwood:You're quite right, Patricia, that young people on the autism spectrum are going to go through the changes of puberty in exactly the same way as all other people, and for this reason they need exactly the same information as everyone else. However, the nature of autism and Asperger's syndrome means that there are some specific issues which usually aren't addressed in regular puberty books, and that's why Jessica Kingsley asked me to write Making Sense of Sex.
Lots of regular puberty books use contemporary language - 'teen talk', if you like - and while this can be fun and amusing, it isn't always to everybody's taste, so I decided that it was more important to treat the subject with respect, and use a straightforward, factual tone (hopefully not too deadly serious, however!). I took into consideration that most people with ASD enjoy facts and appreciate being able to apply logic, so I have always explained 'why' as well as 'what'. An example of this is when I discuss hygiene (an issue for a lot of adolescents, whether or not they have ASD!). I explain EXACTLY what causes body odour, which bits of the body are affected most specifically, the reasons why it is important to wash regularly (health as well as social reasons), and exactly HOW to wash. I don't assume knowledge or make generalisations that can be misinterpreted. Because of the love of knowledge that most people with ASD have, I have provided plenty of facts. For example, the usual rule in sexuality education is to avoid giving young people any sort of hang-ups by giving facts and figures regarding penis size; it's standard practice to say something like 'Whatever size your penis is, is exactly right for you.' This isn't clear enough or reassuring enough for young people on the autism spectrum, however. So I have given specific measurements of both flaccid and erect penises (of fully grown men), and plenty of other reassuring facts about penises, so that there is no room for confusion or doubt.
I have also been careful throughout the book to use correct terminology, with a view to modelling this so that adolescents know how to talk about sex in a respectful way, and can make themselves understood. There is a whole chapter dedicated to the subject of sexual language (including slang), as young people with ASD so often miss out on what is current because they aren't included in teenage groups.
There are some social issues surrounding puberty that can be veritable minefields for young people with ASD, and which are often not included in any detail in regular puberty books - namely, the rules that surround sexual behaviour (especially public vs. private behaviour, body parts, places and language); friendships; coping with teasing, bullying and peer pressure; and handling strong emotions (a particularly important issue for people on the autism spectrum). So I have included whole chapters on these subjects, with some specific guidelines, laid out in dot point format for easy reference. All young people need someone they can turn to when they have questions or anxieties, and research shows that most youngsters would love to be able to talk to their parents about sexual issues.
Many don't, however, often due to their parents' discomfort with the topic, instead turning to their friends for information (or misinformation). Adolescents on the autism spectrum may not be able to turn to a group of friends, so it is absolutely vital that parents and carers fulfil the role of mentor. There is no place for squeamishness or embarrassment - parents and carers MUST educate themselves and be there for their child. Throughout the book I make reference to the young person's social mentor, and give many pointers as to the role this person may take in terms of providing reassurance and guidance, giving accurate information, and helping with friendship skills and emotion management.
At the end of the book, I provide quite an extensive list of resources, both for parents and for the young people themselves. Some of these are specific to people on the autism spectrum and some are mainstream but still very relevant.
The book is illustrated with diagrams and cartoons to provide both detailed information (anatomical drawings etc.) and fun ways of viewing some of the points made in the different chapters. I hope these illustrations make the book more accessible and reader-friendly.
Patricia Robinson: Thanks for your comments!