on the spectrum - girls & women

 

Video, '24/7' CSMCAD, 1993, 45mins unedited, silent  

Autism spectrum disorder (ASD) is diagnosed around four times more often in boys than in girls. Recently, researchers have started to question whether ASD may in fact be more common amongst females than has previously been thought. 

Diagnostic criteria have been, and to a certain extent still are, ...'biased towards the 'conventional' (male) presentation of ASD... [and] Females may be better able to adapt to, or compensate for, aspects of ASD… than are males, sometimes referred to as the camouflage hypothesis (Dworzynski et al., 2012).'   Aspect Practice, Australia

Girls and women are more likely to go undiagnosed or be misdiagnosed with other conditions, unable to access the right support, or gain a perspective on their condition.

'The fact that girls with undiagnosed autism are painstakingly copying some behaviour is not being picked up on and therefore any social and communication problems they maybe having are also overlooked. This effort of mimicking and repressing their autistic behaviour is exhausting, perhaps resulting in the high statistics of women with mental health problems.' 

Dale Yaull-Smith, National Autistic Society 2008

 


'Selective mutism is a common comorbidity of Asperger Syndrome (Wolff, 1995; Gillberg, 1989; Andersson & Thomsen, 1998)' Carl Sutton, University of Chester, 2013 

'Virtually every Aspergirl I interviewed experienced selective mutism at some point in her life, and some still experience it. This occasional inability to speak strikes the minds and tongues of both males with Asperger's and Aspergirls, and it is very unpleasant for all, but girls are "expected" to be socially competent creatures. ….A woman who cannot speak when spoken to will just seem overly shy or unfriendly; perhaps she will even appear mentally challenged. In a culture which currently seems to prize confidence over substance, this extremely public illustration of our shyness and withdrawal is very embarrassing and isolating.'  [And] 'Mutism not only hijacks our words but also our ability to think.'

  '…I am able to think but it's very slowed. I very much want to speak but cannot. It feels as though the neural pathways are racing to process the traffic jam on the information highway and because it is overloaded with information the roads start to clog. So the road of language is the first to shut down. Eventually I am able to speak again, but slowly. (Brandi)'

'…my brain doesn't work in words. It works in images, sounds, patterns. When I'm upset or nervous my translation system breaks down. I can think and think and think, but I can't turn any of it into words… (Andi)' 

Rudy Simone, Aspergirls, Empowering Females with Asperger Syndrome, 2010



'It's as though... a great fault divides visible form on one side from the form of what can be uttered on the other side, each irreducible to the other. And the thread that knits them together and runs between them lies outside these forms in another dimension.'

Deleuze 

 

'an Invitation to speak', Shoreditch Town Hall, 1997 

Mired in myth and misconception, Selective Mutism is a condition that has been poorly understood, researched and supported. The sparse research and support out there (not all of it good) is focused primarily on children. Young people and adults with SM are left out of the picture completely. Putting themselves into the picture, recent youtube videos by young people who have SM, show with courageous honesty what it is like to live with the condition. 

For more information, links to videos, current research, support group and free services for young people and adults with Selective Mutism go to  www.ispeak.org.uk      

Research on Selective Mutism in adults by Carl Sutton (University of Chester, 2013), presenting data gathered from a large number of adult participants all of whom had first experienced the condition in childhood, will be available soon on ispeak.org.uk

Once considered rare, Selective Mutism is now known to affect as many people as those affected by Autism and other conditions such as Cystic Fibrosis, but the lack of research, and therefore lack of awareness, means that this debilitating condition is difficult to understand.

'Selective' implies choice, 'Situational' Mutism is a better label for the condition, as there is no 'choice' in it. 


 

'The world is unfair, unjust, unknowable, out of control. When we tell a story we exercise control, but in such a way as to leave a gap, an opening. It is a version, but never the final one. And perhaps we hope that the silences will be heard by someone else, and the story can continue, can be retold.'

Jeanette Winterson, Why Be Happy When You Could Be Normal, 2011