This morning The Autistic Women,s Empowerment Project was featured on BBC Radio Wales alongside Doctor Judith Gould discussing the difficulties females face accessing an autism assessment ,many women are being refused a referral because GP’s do not recognise the different presentation of Autism in females due to male biased diagnostic criteria and tests
Females from the community have been raising awareness of this problem for many years .Good to have the media on board at last .
Medicine has for a long time been a male orientated field with most research being conducted on males. Sex differences in many fields are now finally being recognised and the same is true with Autism.
For many years Autism has been considered to be a condition that affects mainly men. The belief that Autism was a male condition has dominated since the early research of Kanner and Asperger which was further endorsed by the extreme male brain theory published by Simon Baron Cohen. It has now been recognised that Autism is far more prevalent in women than previously thought but is still often untreated because the stereotype focuses on extreme male behavior.
Many girls have had their conditions missed due to male biased diagnostic tests. Because of this male gender bias, girls are less likely to be identified with an ASC, even when their symptoms are equally severe due to a lack of knowledge of how Autism Spectrum Conditions present in females.
Many girls are never referred for diagnosis and are missed from the statistics. Thus females lack access to support and services. Doctors, Teachers and those who diagnose Autism now need to learn and understand the differences between boys and girls. Females are referred for (ASC) assessment for diagnosis ten times less frequently than their male peers and there are believed to be in excess of 150,000 undiagnosed women in the UK with an Autism Spectrum Condition.
How many girls have Autism?
The overall ratio of males to females who are diagnosed with autism is 3.5 males to 1 female
- Kanner’s Type 4 boys to one girl should be 1.5 boys to 1 girl (NAS)
- Asperger’s Type 12 boys to 1 girl should be 4 boys to 1 girl (NAS)
- PDA Equal numbers are diagnosed due to extreme behaviours
Traditionally, autism is estimated to be four or five times more common in males than females;
The latest prevalence studies of autism indicate that 1.1% of the population in the UK may have autism. Professionals in the field including Simon Baron Cohen are now saying that the ratio of diagnosis should be 1.5 girls to 1 boy and diagnostic tests are being adapted to recognise female traits.
It was originally thought that girls have protective factors and this is what began the research. A 2012 paper that laid out this ‘female protective effect’ in autism marked a turning point in the field, bringing the topic of girls with autism into the spotlight and increasing the level of research, however advocates and females from the Autistic community have been campaigning for recognition of females needs for many years.
Stop the Press Boys and Girls Are Different
“We’re trying to address the question: Are girls different? And how are they different?”
Scholars in other disciplines have run up against and resolved many of these same problems in relation to other health conditions, but in autism, the fact that boys and girls are different is treated as if it’s a startling new discovery.
It wouldn’t make much sense if the minds of men and women were identical. There are many anatomical, and physiological differences between men and women so it’s not rocket science that male and female brains may work in slightly different ways, giving rise to sex differences in cognitive abilities, personality, emotions, and behaviour. All ‘neuro-typical’ boys and girls are very different in their social, communication and behaviour so it’s not hard to comprehend that girls with autism will be different to boys with autism.
Research on Females with Autism
“Understanding the sex difference is going to help everyone, boys and girls with autism,”
There are many first person accounts written by Autistic females however these are often overlooked by the services and establishments that provide support.
Very little academic research has been published on the sex differences in Autism and there is little understanding of how girls and women are affected by Autism. Everybody agrees that the autism field would benefit from more studies of girls with the disorder, who have historically been ignored. Many women express not feeling they have a voice Women are underrepresented. Let us speak. Let us share our experiences.
Autism experts are calling for changes in diagnostic testing, saying the current approach is failing to identify the true number of females with the disorder. They say a massive imbalance in the number of autism diagnoses between the sexes could be attributed to more subtle symptoms in females that are either dismissed by clinicians, or undetected by current testing, which focuses on signs associated with male behaviour.
The Issues Females Face
Women on the Autism Spectrum are often misdiagnosed or missed completely.
- GP, s Consultants and general medical staff have a lack of training in Autism and its different presentations especially the female presentation of Autism
- Many women struggle to get a referral for diagnosis from their GP
- Once diagnosed women are often refused referrals for post diagnostic support and treatment.
- Many women are forced to go seek a diagnosis privately and also to pay for any after care or treatment
- Risk of missed diagnosis (Zaigenbaum et al 2012: Get al 2010)
- Autistic difficulties underestimated at school Mandy et al 2012 School Social difficulties, more likely ignored than rejected (Dean et al 2014)
- Severe co-occurring psychopathology often misunderstood (Wentz et al 2005)
- Girls experience bullying and have an increased risk of vulnerability and exploitation (Cridland et al 2014)
- There can also be implications in terms of social communication, relationships and employment. Girls are at risk of getting into a pattern of behaviour that can cause a cycle of problems, such as self-harm and eating disorders
Seeing Behind the Mask
“For some males, you can make the diagnosis at least provisionally in your mind within 10 minutes of them coming into your office,” says Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University in the U.K. “Whereas for some of the women, it might take half an hour or not till halfway through a three-hour diagnostic interview before they’re revealing what’s behind the mask.”
Clinical referrals to specialist diagnostic centres such as The National Autistic Society’s Lorna Wing Centre have seen a steady increase in the number of girls and women referred over the last few years.
Many feel that it has taken them years to even be ‘believed’. And many are still being refused the assessment they need. The male dominated diagnostic criteria has led to a lack of identification of autistic females. GPs are refusing to refer females for diagnosis because of stereotypical views of Autism and because females are not presenting in the way they expect or women are referred to services with long waiting lists that are then unable to provide any useful support.
Some women have been trying to have their difficulties recognised for years. If a GP refuses to refer someone for assessment, the only option is to go private, at a cost of between £300 and £1,500
Clinicians are missing the autism symptoms in girls .Girls are less likely to be diagnosed with autism than boys are, unless they also have intellectual or behavioural problems, In many cases this is due to the biases in perception, Many Women are refused a diagnosis for having too much imagination or creativity or because they are in a relationship, More girls are now being diagnosed but there are many of us that were missed, purely and simply because Autism was not understood when we were children .That doesn’t mean that we haven’t faced challenges or that our Autism affects us l any less or that we should be less deserving of a diagnosis.
Many women are misdiagnosed with mental health and personality disorders and often this is due to a lack of understanding and a failure to recognise that in some cases, the root cause of eating disorders, ocd, anxiety and depression, or self-harm may be an undiagnosed Autism. Low Self Esteem which has often developed due to repeated incidences of bullying throughout school years and beyond is a major factor in the development of depression and anxiety
The diagnosis of personality disorders or mental health conditions leaves women feeling stigmatised and misunderstood and can lead to over prescribing of medications with little consideration of the fact that those with an ASC are often over sensitive to medication
Misdiagnosed, misunderstood or missed altogether, many women with autism struggle to get the help they need. It’s not uncommon for young women to be repeatedly misdiagnosed and many have collected a long list of misdiagnosis from borderline personality disorder to agoraphobia to obsessive-compulsive disorder.
Female Autism Traits and Symptoms
Without the skills of an experienced clinician the diagnostic Criteria may not pick up Girls (Gillberg 2010).
“Autism and Asperger’s displays itself very differently in woman than it does in men. Women with autism are fundamentally different from men with autism.Autism’s core deficits may be the same for both, but the lived experience of a woman with autism can be dramatically different from that of a man with the same condition. Girls have a greater ability to mask their difficulties by mimicking others social behaviors. boys are more likely to draw attention due to disruptive behaviors in school or at home.Males display externalizing behavior’s, such as aggression, repetitive behavior’s, restricted interests, reduced sociability and hyperactivity .
Rather than acting out as boys do girls will socially withdraw and internalise their frustrations. In contrast, females with autism have more internalizing symptoms, including anxiety, depression and self-directed symptoms such as self-blame and low self-worth.
Girls use masking as a compensation for their social and communication challenges .Socialisation is very cognitive for Autistic girls they have to learn the rules intellectually rather than instinctively. Overall, girls display greater difficulty with social cues and women report high levels of social exhaustion and describe how stressful it is to maintain appearances.
Girls were thought to exhibit lower levels of rigid and repetitive behaviour when actually many just don’t fit the typical autism picture. boys presented with more noticeable differences including repetitive behaviour’s like hand-flapping and highly-restricted interests, A girl who tells a clinician she is interested in animals or collecting Barbie’s, rather than lining up Thomas the Tank engines, is unlikely to raise suspicions of autism, unless the clinician probes for unusual narrowness, such as collecting facts only, or intensity of interests. You need to ask the right questions.
Autism symptoms are subtler in girls than they are in boys. As a result, doctors looking for only obvious signs of autism may not find them in girls. Recognising the signs in girls can be difficulty as girls become very adept at masking their symptoms, (Happé.) Autism can also present differently in girls, presenting as anorexia or other eating disorders (Zucker).
It’s not just women with Autism that are struggling to get diagnosis or support. It is a situation that is facing men women and children alike. Women have the added difficulty of poor understanding of how female autism presents. Many individuals have never been able to get a diagnosis or any help They have had social and communication difficulties all their life but have never been able to get recognition of their difficulties and even fewer have been able to access support.
Girls are frequently diagnosed with autism at older ages on average girls are diagnosed two years later than boys. Many girls are not being identified or girls have their difficulties completely overlooked during childhood and this is a combination of lack of understanding of the different presentations of Autism and a lack of trained clinicians which leads to many females going through life with no support
We need far more psychologists that are trained to recognise autism spectrum conditions in older women. Many women receiving late diagnosis after seeking answers for troubles that have been there since childhood including chronic anxiety as children, and the onset of depression by the time they are teenagers.
Even after a girl gets the right diagnosis the services available and the information provided has a male bias there is limited information on the additional challenges being female may bring, whether physical, psychological or societal. There is only limited information available for these girls or their families about how to deal with puberty and menstruation, how to navigate the dizzying array of rules in female friendships, how to talk about romance and sexuality or even how stay safe.
A Women’s Rights Issue
Girls need Support too
This is a new area of research and it is now necessary for clinicians to be made aware of the signs in girls. There is still very poor level of understanding of the female presentation of autism amongst service providers and because of this there is no inclusion of female’s needs and rights in legislation. This is becoming a gender discrimination issue as Autistic females are a minority within a minority Women on the Autism Spectrum are often misdiagnosed or missed completely. This needs to stop as these women miss out on support , can feel isolated and alone and can go on to develop chronic health conditions due to living with long term anxiety and stress .
Local Authority, NHS bodies and NHS Foundation Trusts should: Recognise that women with autism may be missed and misdiagnosed as they may be better able to mask their social difficulties. There can also be a perception that autism is something that men have and this can impact on women being referred for diagnosis. Improved awareness and training should help overcome this.
Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy
Willow C Holloway
Founder of The Autistic Women’s Empowerment Project