Monday, 25 August 2014

79. Turner Syndrome, 'Brain Sex' and Autism- It's personal!

I believe nothing in this life is coincidental. When I first met Lucy in mid-1997 and started getting involved with Turner Syndrome, possibly the biggest ever news story on Turner Syndrome broke. To say it causes something of a stir in the Turner Syndrome is an understatement!

David Skuse published research in ‘Nature’ Magazine in Mid 1997 claiming he had found the reason why women have better social skills than men based on research on girls with Turner Syndrome. He claimed that girls with TS who had got their one X chromosome from their father had better social skills than girls who had received their one X Chromosome from their mother. He claimed that girls who had received their X chromosome from their mother had brains that were more similar to boys, and that they behaved more anti-socially because of this. This was supposedly because there is a particular gene on the father’s X chromosome that confers socially acceptable behaviour. All women who have normal XX karotypes would have this X whereas only some women with TS would have this gene. All men get their single X chromosome from their mothers, therefore would never have this ‘magic gene’ that was supposed to be on the father’s X chromosome. Notice the sexist assumptions that underpin this. Somehow the father’s genetic material is better than the mothers. Note that women are expected to be well behaved, put the needs and thoughts of others (i.e. Men!) before themselves and be socially docile. They are expected to be ‘no trouble’. Women with Turner Syndrome offend against male notions of ‘femaleness’ in the first instance by being infertile. We also offend by being short and often having ‘physical defects’ such as webbed necks and moles, therefore fail to be conventionally attractive. We are an easy class of women to stigmatize. What is even worse is that this research said that certain women with Turners were better than others.

This research was reported in Time and the national press in the UK. I can only find one online press report of the time. We live in a misogynistic patriarchal society which seeks to establish scientific reasons for the treatment of the two sexes. In particular there is a quest for ‘brain sex’ which apparently roots the different treatments and experiences of men in women in purported neurological differences rather than looking at issues of sexism. Cordelia Fine has written extensively about this, especially in her book ‘Delusions of gender’. I have to say this but Skuse was claiming that his research went towards explaining the differences in female and male behaviour http://www.nytimes.com/1997/06/12/us/parental-origin-of-chromosome-may-determine-social-graces-scientists-say.html

Imagine how women with Turner Syndrome felt about press coverage like this. As if it was not difficult enough before this to be open about Turner Syndrome. I have heard from friends with Turner Syndrome that some people claim to know all about women with Turner Syndrome and that they are ‘socially inept’ from reports of this research. This research also plays into the idea that somehow women with Turner Syndrome are not fully women or are ‘damaged’ women. As it happened there was an international Turner Syndrome conference scheduled in Coventry that summer. Lucy and myself had booked to attend. David Skuse was scheduled to talk. Guess what, we made sure we attended his talk. We challenged him about his findings and his methodology. We also passed notes between each other making less than respectful com-ments on Skuse! (see, we women with TS are so badly behaved!). The woman who runs the Turner Syndrome Support Society in the UK was and remains very supportive of David Skuse’s research. She did not understand how it creates problems for women with TS and what is worse she affirms his negative portrayal of us. This is one of the reasons I am not involved with the national TS group.

Skuse’s theories have been used in TV documentaries (why men don’t iron on Channel 4 and at least another where a young woman with TS had to say she had awful social skills simply for saying they did not like someone’s haircut- I kid you not). Now I have to ‘fess up. I took part in the next stage of David Skuse’s research in 2001-3. This involved having several brain scans and having a meeting with David Skuse himself. He really enjoyed talking to me as I seemed to explain some of the cognitive/social issues women with Turner Syndrome have. I do not regret doing this. I do not believe David Skuse is a bad person and that if his research had been used differently it could have been potentially helpful. I also feel that I have no right to criticize Skuse if I am not at the same time willing to assist him and work with him.

An unpleasant side effect of this research I inadvertently learned which parent I got my one X chromosome from. This is information that needs to be imparted gently. Yet it was there on a piece of paper in front of me at a hospital check up. David Skuse continues to claim in his research claims that women with Turner Syndrome have autism/Asperger’s Syndrome type behavioural/social issues. He still speaks at TS conferences (apparently Lucy and my Liverpool TS friends had a few things to say to him at a re-cent conference!)
http://hmg.oxfordjournals.org/content/14/suppl_1/R27.full
http://www.autismspeaks.org/news/news-item/national-alliance-autism-research-announce-new-project-identify

This continues to lead to Turner Syndrome being reported like this http://www.theguardian.com/theguardian/2005/feb/04/guardianweekly.guardianweekly11

I have actually had to deal with the consequences of David Skuse’s research. When I was referred to an occupational therapist by my work, he basically used David Skuse’s research to say I had Asperger’s type behavioural issues. I got in contact with David Skuse to ask for guidance as to whether I should get assessed for Asperger’s. It took a considerable time for him to meet me. After our initial meeting, he did not bother to contact me for several months. I eventually got him to arrange a meeting with one of his researchers who turned out to be an undergraduate. I feel that what was offered was completely inadequate.

One of the main reason I am concerned about David Skuse’s pronouncements is that he does not appear to understand the effects of his pronouncements on the lives of women with Turner Syndrome. I had helped David Skuse with his research but when I needed some guidance it was not given. I do feel his research allows for the scapegoating of women with Turner Syndrome. There have been no positive or constructive suggestions to help women with TS leading out of this research.

But my concern here is not just for women with Turner Syndrome. Women are expected to be socially compliant and to be accommodating. Women who fail to do so are seen as transgressive and abnormal. Brain Sex’ does not excuse or explain thousands of years of the effects of women living under patriarchal systems

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