Kate E. Reynolds


    There’s an irony that my thesis for my first degree was a feminist perspective of informal caregiving, at a point when there was little focus on carers from the UK Government. Twenty three years later, I find myself a caregiver to my nine year old son, who has moderate autism disorder with severe speech delay.

    My marriage was struggling badly but my son’s diagnosis finished the relationship – we parted six months after Jude was diagnosed in 2005. A divorce rate of 80% is often quoted among couples with autistic children (see Jenny McCarthy interview by Oprah Winfrey), but I haven’t found any studies that substantiate this figure – it’s an area that needs more research.

    One piece of research noted that in the general population, after children reached the age of eight and above, divorce and separation rates declined in line with the lesser demands as children developed and became increasingly independent. For those with autistic children, the rates of divorce/separation remained high, reflecting the continually high demands placed on both parents and the resultant stress this induces. See: http://www.nfm.org.uk/news/76-general/306-parents-of-autistic-children-more-likely-to-divorce

    Sole parents overwhelmingly are women, partly for economic reasons (the man can entertain more income, regardless of whether or not they remain a couple.) Usually, the male partner has retained his work/career while the mother either takes a work/career break or returns to work only part-time. Whether or not a couple remain together, the mother’s ability to return to work, part or whole-time, is limited due to demands – often abrupt and unforeseen – of their autistic offspring. Ten weeks ago, for example, my son’s school decided to close his part of the specialist learning provision, with less than 24 hours notice. I ended up with my son at home most mornings. Childcare for Jude would have been around £12+ per hour through an agency, so was not an option. I was just lucky I work from home and could make up the time overnight.

    Women with caring responsibilities find themselves unable to get jobs which align with their qualifications and experience, because employers understand that they will be undependable – even if these women have ability and willingness to work – due to circumstances outside their control. Despite a reasonable amount of qualifications and experience, I couldn’t even make I through a paper sift for jobs that fitted my profile. On the occasion I phoned to ask why, I was informed (unofficially) that I was perceived as an “unreliable bet” due to the demands of my son’s autism.

    It’s only in the past 5-10 years or so that the way autism presents in girls and women has started to be examined. Because Kanner’s work in the 1940s which identified autism, was wholly focused on boys, the baseline tests and modes of diagnosis became based on how autism manifested in males. It’s becoming clear that females on the autism spectrum are being under-diagnosed or misdiagnosed. This again is an aspect of autism that needs addressing. See: http://www.tonyattwood.com.au/

    Doubtless there will be a chorus of people claiming that still more children are being identified as having Special Educational Needs without justification (see http://www.telegraph.co.uk/education/educationnews/9265948/Thousands-to-be-struck-off-special-needs-list.html) Again, figures will rise for autism spectrum disorders much of which, in my opinion, historically has been due to greater awareness. However there needs to be a rebalancing of diagnosis and subsequent support to girls/women on the spectrum.

    Finally, I can’t leave a feminist perspective of autism without commenting on the phenomenon of “refrigerator mothers” a phrase used from around 1950, well into 1970s (if not beyond.) This was the perception that autism, characterised by social withdrawal, lack of speech, profound dislike of touch and ritualistic behaviours, was caused by maternal coldness. The first references to this were from Kanner’s 1943 paper and it wasn’t until 1964 that an alternative was put forward by Rimland who argued that autism was what we know it to be today – an organic neurological condition.


Kate E Reynolds - blogging

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