health

The autistic women denied a diagnosis for decades


The inaccurate cliche goes that autism is a case of ‘extreme male brain’ – and for years, women and girls were excluded from some studies, meaning those with the condition have been undiagnosed or misunderstood. But during the past 20 years, the proportion of people diagnosed with autism who are women and girls has increased – and some estimates now suggest that they make up around one in three of those who meet the diagnostic criteria.

Despite that improvement in understanding, the popular perception of autism remains skewed towards ‘male’ traits, which means girls who may mask their symptoms are still ignored or subjected to unhelpful treatment as they grow up.

Last week, the television presenter Melanie Sykes and the model Christine McGuinness both revealed that they have been diagnosed with autism as adults – news Sykes called ‘life-affirming’ and McGuinness said had left her ‘relieved to finally understand myself’.

In this episode, Nosheen Iqbal speaks to Carly Jones, who struggled at school and in her personal life without ever knowing that autism might be the cause. Learning that two of her daughters had the condition ultimately led to her own diagnosis at the age of 32. She explains what Sykes’ and McGuinness’s stories will mean for awareness of autism in women and girls. And she reflects on some of the problems she faced as a result of that misunderstanding, and how things have changed for her since she discovered the truth – both in her day-to-day life and in the work she does as an advocate for autistic women and girls, which led to her being awarded an MBE.

We also hear from the Guardian’s science correspondent Hannah Devlin, who explains how scientific understanding of autism has developed in recent year, and the impact that the social pressure to ‘fit in’ may still have on the women and girls who have so often been missed.

You can read Hannah Devlin’s piece ‘We weren’t visible’: growing awareness leads more women to autism diagnosis, here.

Carly Jones’ book, Safeguarding Autistic Girls: Strategies for Professionals, is released in December and available for pre-order at the Guardian bookshop.

• In the UK and Ireland, Samaritans can be contacted on 116 123 or email jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at www.befrienders.org



Melanie Sykes.

Photograph: Ken McKay/ITV/Shutterstock

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