Women with Autism Feel Let Down by the UK's National Health Service

Despite autism having been proven to be far more common in women than was previously thought, it seems we still have some catching up to do.

Alice Tchernookova

Photo via WikiCommons.

This article originally appeared on VICE UK

The Department of Health's (DH) recently published guidance on how to handle adults with autism in Britain has revealed a lack of attention to women's special needs.

Released late last year, the report largely ignored the results provided by a survey conducted of over 100 women by Autism Women Matter, claims Monique Blakemore, a member of the campaign group. The survey showed that not only had many women had struggled to get a diagnosis from their GP, but even when they had, they'd been refused referrals for treatment. Of the 62 percent of the women surveyed that had been diagnosed, 29 percent had been forced to go private for treatment that, according to the Guardian, costs between £300 [$455] and £1,500 [$2,275].

The DH survey, which was specially ordered as part of the Autism Strategy Review, revealed that, among other issues, females are referred for an Autism Spectrum Condition (ASC) assessment for diagnosis ten times less frequently than their male peers, despite autism being far more common in women than was previously thought.

We spoke to Blakemore, who was herself diagnosed with Asperger's Syndrome—a form of autism spectrum disorder (ASD) characterized by social impairment, communication difficulties, and restrictive patterns of behavior—and has two young sons who are both on the autistic spectrum.

VICE: Hi Monica. What did you find was missing in the DH report?
Monique Blakemore: Women are struggling with the lack of training of professionals. The report does say they need to be trained, but that's not enough. They need appropriate training for the different types of autism, not just autism as an umbrella term. Social services' lack of efficiency is also a major issue—parents with autism sometimes have children with similar syndromes and the way they may need help to access the system as autistic, disabled individuals, has not been considered. This is where a lot of autistic women are really struggling to get the right support for themselves and for their children. If the parents can't access care, neither can the children.

What difficulties do autistic people encounter when it comes to healthcare?
In general terms, it can be very difficult to get access to a GP. There are executive difficulties in being able to figure out how to make an appointment amongst competing demands. A lot of them require you to make a telephone call and a lot of autistic people don't feel comfortable using the phone. Or, if you go into adult surgeries, where there are usually a lot of people, it's a social interaction that can be quite hard to navigate.

Is there a problem with autistic women having undiagnosed health issues, then?
Yes. It's thought that autistic women are more likely to get a polycystic ovary syndrome, but yet they have a lower diagnostic rate. Women may also have a poor understanding of their own body and may have never been given the right information about female reproductive health, so they don't know what's normal and what they should be questioning. If they lack that training it may not naturally appear to them that they have a problem. The government needs to make sure these women are given the information they need to understand their bodies, and that young women get the right prevention.

Your survey seemed to highlight a misunderstanding of autistic women.
Yes, women are sometimes wrongly accused or misunderstood by social services. The latter need to have an understanding of how they impact on an autistic family, and of how an autistic family can be different in its way of communicating. A great example of how they might feel is the Letter to a Social Worker we published on our website. People may think a woman is being obstructive, but it may just be a social communication delay related to her autism. Women very much struggle to get these basic, reasonable adjustments of behavior. They are often misjudged or wrongly accused of having a personality disorder, of being difficult, aggressive, or "bitchy." These are disempowering statements. Autistic people are often more likely to be harmed than to harm others.

What made you be part of the Autism Women Matter campaign?
There's a cruel lack of justice for autistic women. They have a lot to offer, but have too many difficulties accessing the same support as non autistic women. It's a sort of double discrimination: being female, and being disabled. Another thing that upsets me is how autistic women are misunderstood when it comes to motherhood. I've heard of cases where children are taken away from the family and put up for adoption—something that would be preventable with the right support. They are not even allowed to access the meeting where experts discuss your children's fate and decide on whether you can keep the children. That is a huge violation of basic women's rights, and of children's right to a family. Everyone knows this is an issue but no one wants to take it on.

How can society contribute to a better understanding of people with autism, do you think?
I think society has a long way to go in accepting differences across all disabilities. The best gift you can give autistic people is not to try and change them, but to accept the way they are and find their strengths.

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