Thursday, 23 May 2013

Autism and the question of gender, or can our girls have a good time too please!


Early this week I was a guest at a meeting of parents of girls with a diagnosis of autism. As the mum of a wonderful 24 year old daughter who has Global Developmental Delay I felt very much part of the event. Most of the families represented had girls in mainstream who would generally be described as Aspergers or 'high functioning' . What struck me was the predominance of mums over dads, with some brave exceptions. This got me thinking about gender in relation to autism and what we know or think we know.

When I started at Resources I was categorically told Autism is a 'male disorder'; it is 'at least 90% male'; that 'although there are some girls these are probably misdiagnosed'.....I took all those statements with a pinch of salt. It has always been clear to me that girls with a condition that manifests itself in 'different' behaviours are often viewed differently to boys. It is more acceptable for girls to be withdrawn and quiet, to be happy in a 'world of their own', to cry easily and become anxious. To diagnose girls seemed trickier. As the years have gone by the figures and the interest have changed. Slowly the statistics are becoming less stark. 90% has moved to 75% or even 60% depending on which bit of research you read but it is still the case that most of our girls find themselves in groups which are predominated by boys. That is particularly true for those girls attending special schools where a class may well consist of 8 or 9 boys and 1 girl.

Does this matter? Where we are trying to help our young people develop friendships then it probably does. Interests are different however hard we try to stop thinking in a gender stereotypical way. That does not mean they can't and shouldn't cross over but in reality they often don't. Being with someone who is 'like you' is reassuring and can help build confidence. At Resources we had a wonderful girls group a couple of years ago. It was very successful and the girls had a great time. However, it was an add on and we did not have the capacity to repeat it. This summer we are looking to do it again for some of our girls based in North London. It will be interesting to compare the groups and see how those girls in our mixed groups feel compared to those in a girls group and to get the staff to think about confidence and friendships in particular.

As autism is a lifelong condition this conundrum applies to our adults too. Women with autism face the same struggles as men but there is the added vulnerability of exploitation and abuse. At Resources we have seen several of our young adult women exploited by predatory older men and we are working on a social story book to help them think about appropriate behaviour and keeping safe but they also need to be independent and have a right to a sexual and emotional life as we all do. This is much more difficult for women to navigate and to get right as the risks are greater. Many of our young women desperately want to have children and there is a fear from some professionals that their autism means they will not make 'good' mothers. Can empathy be learned when it comes to your own child?

As with everything I look at in this area it appears that the answer is the very unhelpful 'it depends'. Just like those of us who are not on the spectrum every girl and every woman is different. Blanket statements are wrong and may lead to a great deal of unhappiness. We must give our girls and women as much choice as we can and as much information as they can absorb and allow them to make the same mistakes as our boys and men but we also need to make sure they are safe.

That most carers are female is not a new revelation but that too is a factor in this debate. I am regularly asked for male carers for our boys because their caring environment (mums, teachers and so on) are female and it is felt a male role model is important. Most of our befrienders are female and we struggle to get male volunteers. Caring and volunteering remain in the female domain, if a little less than a few years ago. My male staff are wonderful and we have worked hard to attract them and keep them but should we celebrate them more than my equally wonderful female staff?  Mums still take the brunt of caring and I have mums in their 80's caring for men in their 40's and 50's. The world remains unfairly balanced and we need to find ways to redress and compensate for this.

I will leave the last word on this to Jean who is an adult with autism who volunteers with us. She says that when she was growing up she always felt like an outsider, she had no one to talk to about being a girl or a woman it was all about her 'problems'. She is now in a  relationship and feels like she is  an insider working at Resources but it took a long time to get there. 'Give us time and we can make the right decisions and get on with our lives' is her message. I hope that by giving some of our girls just a little time and space that is theirs we can help them understand themselves and gain in confidence to walk alongside our boys into an adult life that is fulfilling and hopefully accepting of them as they are.

If you expected to find a definitive answer to the gender question I am sorry to disappoint. I hope though it gives some food for thought and is a discussion that we can continue to have over time.

Please do feel free to comment, or share your views. It would be great to hear from you.

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