Empowering Autistic Girls and Women

Posts tagged ‘ASD ’

Date For Your Diary

Two of the founders of  The Autistic Womens Empowerment Project Willow and  Helen will be presenting at this event .

We will presenting on the challenges faced by Autistic girls and women across the life span but more importantly we will be presenting on all our recent achievements to show the positive outcomes that can be achieved when we come together as a community and the benefits of self awareness ,self acceptance and self -advocacy .and using a strengths based approach .

We’ve come along way in the last two years .

If anyone has a few free hours on Saturday .Please come along and support us .

The Event is free but you do have to book a place .

EVENT DETAILS

” Bangor University School of Lifelong Learning in partnership with the Women’s Equality Network (WEN) Wales will be hosting an International Women’s Day event on Saturday 4th March.

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This is a day to celebrate but also to challenge, give voice to and organise around the issues women are facing.

The key speakers are grass roots women, all current or past students in Lifelong Learning, each with barriers to face, learning to undertake and challenges to surmount.

Theirs are stories of the everyday lives of women who rise-up and challenge and change the world, who show what can be achieved through learning, working together, marching together in myriad “different ways. ”

The politics are women’s politics!

Book Here

Why is Autism Missed in Females?

ONE WOMAN WITH AUTISM

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.

Misdiagnosis

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).

Late Diagnosis

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.

Post Diagnosis

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

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World Autism Day 2016

WORLD AUTISM DAY

Happy Anniversary AWE Project

AWE MEET UP IMAGE

A year ago today The Autistic Womens Empowerment Project was officially launched at the Autism Show 2014.

We are a User Led project run by Autistic Women for Autistic Women .

As an Autistic woman myself and as the mother of Autistic children, I was aware of the challenges that myself and my children had but It wasn’t until I received my diagnosis of Autism after searching for answers for years that I gained full understanding of the difficulty’s many women and girls face in obtaining a diagnosis and the lack of post diagnosis services available

Following what I felt was not only poor treatment but also discrimination I became very passionate about the need for correct services for AS girls and women I had my counselling for trauma stopped abruptly because I had received an Autism diagnosis .I had continually asked for support for my challenges but continually hit brick walls and so in sheer desperation I reached out to other women in the Autism community and I started my project. which launched at the Autism Show in June 2014 supported  by Autism Life Dogs

The last year has been a time of researching all I can about Autism ,in fact it has become a special interest and I have become hyper focused on learning all I can , Very little research has been undertaken on the different presentation of Autism in females .Most research has been carried out on males and it is only very recently that girls have begun to receive correct recognition of their difficulties many have been misdiagnosed with personality disorders .I don’t learn  from books that are written by university professors but material written by my peers in the Autistic community and through the real life experiences of the women I connect with ,I am thankful to all the women who have come forward to help 

This last year has been a time of planning and developing a strategy and now  we are ready move on and start doing some work that will benefit our community. I have already given a number of talks and our workshops are beginning locally in September The last year I have spent making connections with women all over the country so that I could listen to their views and the difficulty’s they encounter. I have connected and met with campaigners and advocates and next year hope to meet up with many more 

I have also designed a website and developed a strategy to raise funds as  I refuse to wait for the government to sort out funding. We have got to do it for ourselves, it worked for the suffragettes, the temperance movement and the Women’s Institute so there is no reason why it can’t work for Autistic Women .If it has to be cakes and jam to raise funds then so be it. 

So what is my Mission? 

It is to provide information to empower and support women and in the process to join them on a journey of healing and self-knowledge .This journey includes healing, self-acceptance, developing healthy coping mechanisms and empowerment. 

The road to getting a diagnosis was a long one for me but finally understanding myself gave me a great sense of liberation .It made me feel complete for the first time ever in my life I felt connected to other people . I knew that my daughter had the same difficulty’s as me and the same physical symptoms etc. that I had when I was her age ,it was like I was watching my life unfold in front of my eyes and it was when I knew that I was going to have to yet again fight the system to get any support for her that I decided to start the AWE Project .  I  have faced challenges due to my undiagnosed Autism all my life .My diagnosis helped me finally gain understanding which in turn led to self- acceptance and the chance to finally gain some self-worth . 

I don’t want my daughter growing up with a poor negative self-view because of her uniqueness ,l want her to embrace it and feel able to step into the world as an adult and have a positive life journey and I feel every single girl on the spectrum should be empowered to not feel that she has to take all her time trying to make people like her and fit in ,because she wasn’t born to fit in she was born to stand out .She needs to feel able to love herself and really like who she is .

When I began to understand my challenges .I felt strong enough to reach out to others I was welcomed and finally felt that I had found my peers ,and now am part of a large support circle .It was those women who empowered me, who gave me the strength to keep going and they continue to do that to this day .Whenever I am down or I don’t understand something there is someone in my circle of support who I can reach out to for advice .We support each other with compassion and empathy and it is a wonderful thing to see. I am also a firm believer that education and knowledge should be free to all and am inspired by how through the use of the internet we are not only developing a great big knowledge bank but are becoming a global community .I don’t even have to step outside my door and every day I speak and am connected with people in different country’s all around the world .We are learning from each other.   

The Autistic women I connect with tend to be the women who are getting a late diagnosis of Autism .They are the women who never managed to fit into the world or who did and got continually hurt and misunderstood. Many have self-recognised their difficulty’s but are still undiagnosed or too scared to go for a diagnosis because they fear the reaction of others .Others have been refused a referral because their GP is stuck in the dark ages and has no idea of what Autism is all about .There is to many GPs that are firmly stuck in the medical model and usually just dish out prescriptions for anti-depressants -anti-psychotic’s or sleeping pills. Due to living with constant high stress levels a lot of these women have developed stress related illnesses and most are severely socially isolated and rarely ever step outside their doors reaching out all be it through the internet is all they are capable of at the moment and all they may ever feel comfortable with. Many have had traumas and crisis’s throughout their life’s that they have never had any help for .

I have in the last six months began to learn about how the system works which has changed a great deal in the years since I stopped working in the Autism Sector and all the regulations regarding SEN and Social Services has all changed since I fought them for my sons education and support .In England there is an Autism Act which included women in its updated guidance .I however live in Wales and we do not have an Autism Act .The Welsh Government have their own Autism Strategy and they also have their own regulations relating to government services. Myself and the other women who play a role locally have been educating ourselves  ,so that when we are ready to move forward we have the correct information and structure in place . The Welsh Assembly elections take place next year so now is the time to really campaign for change to insure that all party’s include the implementation of an Autism Act for Wales .

Presently we are focused on developing our  women and girls group , so that we can make positive changes in our local community  and raising awareness through social media .We are also developing a project  in our local area to campaign for an Autism Act for Wales .We want to make sure that womens needs are included in all statutory legislation 

Over the next year The AWE Projects social media will be showcasing the talents of females with an Autism Spectrum Condition ,including artists ,actors musicians and many more .

If you have a talent you would like to share please contact us 

The Autistic Womens Empowerment Project Phone Prompt Sheet

Busy today preparing for a very important meeting and realising that I am going to have to overcome the difficultys I experience using the phone .

Difficulty’s with executive functioning ,auditory processing and anxiety makes communicating by phone really hard

However it is something that I am going to have to overcome to push our cause further .So I designed myself a sheet to help

Have shared as it may be of help to others

Phone Prompt Sheet One Phone Prompt Sheet Two

Clink on the link below to print off

The Awe Project Phone Prompt Sheet

World Autism Day 2015

World Autism Day 2015

World Autism Day

This week has been Autism Awareness Week and today is World Autism Day .Organisations around the globe are putting on events to raise awareness .

Everyday for me and for the rest of our team is Autism awareness day .My Autism is a part of what makes me unique and gives me a different perspective.I view the world through a different lens as do two of my four children .I am shouting out on this day not just for Autism Acceptance but for Acceptance of Neuro Diversity as a whole .Acceptance of People as they are .

We all have good times and we all have bad and we all make mistakes .No one is perfect .We all have our difficulty’s and challenges .We all find life hard at times .

Instead of looking at me and everyone else who doesn’t quite fit into the social norm with either pity or condemnation try looking at the differences in others with compassion and acceptance .

Open not just your minds but your hearts to the diversity that exists in all of us

Together we make up the Spectrum of Humanity Just like every colour of the rainbow -Every shade of skin -Every Race and Every Religion

We all laugh and we all smile .We all cry and we all grieve

Accepting the differences in others begins the day you accept your own uniqueness .

I have always been rejected socially because of my differences even when I have tried to conform to fit in .It’s not that I can’t make friends because I can .I know how to be socially acceptable Over the years I learnt how to be polite and I learnt to understand the complexities of social behaviour .I worked hard to understand these things because they didn’t come naturally to me ,I had to study very hard ,reading for hours about subjects such as how to read body language and how to communicate despite this I have too often been rejected because of my differences and because I can’t be the friend people expect me to be .

Because I choose to have a very small social circle others often assume that I don’t like people but that is far from the truth .I am just not comfortable I enjoy company and relish having interesting conversations but I also have many challenges that I have to overcome besides my Autism including severe sensory challenges which mean that in the greater scheme of things a vast social life with lots of friends is not really high on my list of importance .I don’t have the energy left to put on a mask that hides my differences from the world. or too continually have to relearn ever changing social rules

The rules of society are changing so quickly ,we are now discussing societal issues that were until recently not talked about because of the stigmas attached .When I was growing up those with learning disabilities or mental health problems were still institutionalised .Locked away and hidden from the public view .What you didn’t see you didn’t have to accept .Sexuality and gender differences were not discussed Domestic Violence was acceptable and child abuse was never spoken about .These things are now openly discussed and there are many people advocating for the right to be different and against the discrimination that many minority groups experience

The world is changing .We are slowly becoming a more empathetic and caring society that sees people for their strengths rather than there weaknesses and focuses on their ability’s rather than there disability’s but we have a long way to go before we move from awareness to acceptance

Copyright Willow@The AWE Project