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Joined: 25 Aug 2013
Age: 64
Gender: Male
Posts: 27,754
Location: Long Island, New York

24 Nov 2021, 9:38 am

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.

The podcast is about 30 minutes

Professionally Identified and joined WP August 26, 2013
DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

It is Autism Acceptance Month.

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman