Tuesday, 12 July 2011

Coffee does not always mean coffee

The title of this post is based on an episode of Seinfeld. I wasn't a huge Seinfeld fan but happily bumped into the odd episode late night on BBC2 now and again. To quote:

Donna: Would you like to come upstairs for some coffee?
George: Oh, no, thanks. I can't drink coffee late at night, it keeps me up.

And with that comes George's realisation that 'coffee doesn't mean coffee, coffee means sex!'

I am hoping that this post manages to get through the many Internet filters and does not single this blog out as being one of 'those' kinds of blogs (which, in my best British prudish voice, 'it most certainly is not'). I want to talk about sex (education) in this post and how information about sex, sexuality and relationships are being transmitted to people with autism spectrum and related conditions. This is going to be quite a candid post, so please do not get too offended. It is quite a long post also.

I will readily admit that I am not an expert on this (or any) area of autism, merely an interested follower of the various discussions and research being carried out. I do know a few people in the psychology and autism research world who specialise in this topic in terms of either being research active or being at the coalface when it comes to teaching sex education to children and young adults with autism. Having seen one or two of them talk about this issue and present some data, I have to say it made for some interesting listening.

Parents the world over, whether with children with autism or not, will eventually be faced with the issue of 'the birds and the bees' and how to communicate an effective message about sex and relationships. Even where older children and adults present with profound difficulties in areas like cognitive skills or language, the chances are that sex or sexual behaviour will at some point emerge and need to be discussed. Of course such issues might be barriers to communicating about sex, but experience would tend to suggest not to under-estimate a person's capacity to receive such information.

In the more general world of sex education research, there is still quite a bit of discussion about how and when parents should communicate information about sex. I heard one speaker talk about this at a conference last year; some of her findings can be seen here. There are perhaps a few lessons from this research which are just as applicable to boys and girls with autism, as they are to everyone else. Things like:

  • Children and adolescents generally want information about sex and relationships from their parents. Gone are the days (like mine) where boys and girls were separated off at school and taught about each others 'bits' by nervous biology teachers alone and without the aid of parental support. Children want parents to get involved.
  • Mums in particular are seen to have an integral role in disclosing information and advice about sex to their children. Dads play a role but I assume that girls especially might perhaps feel a little more comfortable with a 'female' perspective. Whether this is due to societal conditioning (Dad's can't talk about menstruation apparently) or merely the fact that mums have been there and done that, I don't know. Both parents can contribute.
  • Boys are perhaps more likely to use other 'sources' of information for their sex education particularly in the age of the Internet. This may or may not give a 'distorted' idea about certain 'normalities' (if there is such a concept) in sex and relationships depending on which sources are used. Not every plumber or gas engineer for example provides 'that kind of service' to lonely housewives.
  • Parents generally want to be able to talk to their children about sex, but perhaps feel uncomfortable or lacking in the necessary schemes and plans to communicate such issues in an effective way. Starting the evening meal with the words 'let's talk about sex' is probably going to make for an interesting evening and some subsequent interesting playground conversations among young offspring.

I'd like to think that these same issues are pertinent the world over, and across things like autism and other developmental conditions. When specifically applied in the context of autism, there is perhaps an even greater requirement to ensure that sex education is imparted timely and properly given issues like the increased 'vulnerability' of some people on the spectrum when it comes to sex and the perhaps greater potential for abuse or being manipulated. Unfortunately this scenario does happen.

One of the best people I have heard talk about sex and autism is Lynne Moxon. Lynne is a bit of an expert in this area as well as being a resident here in the bracing North-East of England. You can download one of her (fairly) recent Powerpoint presentations here from a conference back in 2008 (scroll down the speaker list to download her talk titled: Issues within puberty and sexuality in people with autism spectrum disorders). I won't go through her presentation in rote fashion but would like to draw out a few important points that she raises.

Puberty (or should that be PUBERTY!). A previous post on this blog has discussed that most taxing of times for children and parents, puberty, in relation to autism. Bearing in mind the more generalised 'guidance' being suggested about the timing of sex education (earlier rather than later), I think most parents would have been confronted with sex education issues with their children before the start of puberty. I don't say this in such a way as to say 'it must have been discussed' because the situation is likely to be different between different children and different families. Given the physical changes associated with puberty, one could perhaps expect that this might be a good time to 'top-up' the knowledge about sex and relationships.

Communicating the message. There are a variety of ways of talking about sex and relationships. I know some parents have talked about how their child with autism liked to hear about it 'textbook' fashion - so getting out the pictures and going through the biological details one by one, using the proper names (not our social inventions) for the various bits and pieces, and importantly explaining that the pictures are representations, and different people come in different shapes and sizes. Techniques such as social stories might also come in handy in these descriptions to discuss tricky things like masturbation and the 'right' and 'wrong' times to do it. I would also draw attention to the fact that Lynne does also talk about other important issues: personal hygiene (making sure that everything is kept clean), how sex is portrayed in the media (and often does not reflect 'real life'), sexual diseases and the various types of contraception available.

Outside of Lynne's work, there are a few other valuable sources of information. The writings of Marc Segar have been linked to in a previous post. For those who don't know, Marc was a young man with Asperger syndrome who wrote a very useful 'survival guide' based on his life and experiences nearly 15 years ago now (it can be download for free here). Marc talks quite a bit about the various social nuances related to sex and relationships; more to do with the social situations where sex and relationships might crop up. So things like the use of chat-up lines (p.16), what to do when you like someone (pp.14-15) and even little details, such as when someone is a virgin, the various intricacies about not communicating this fact when in a social group of men in particular. I found Marc's writings to be insightful and worth a read.

I do hope that I have not offended anyone with some of the content used in this post, given that most [all] parents will have to discuss such issues at one time or another. I will restate my non-expertise in this area of autism; please do not take this as anything but a post on how people have talked about sex education and autism and the various issues involved. People with autism are as different, complicated and individual as anyone else, so it is unlikely that there is a 'one-size-fits-all' method for imparting advice on sex and relationships. Parents however know their children best and therefore should be in the driving seat as to when and how the message about sex is communicated.