Why We Are Needed
Autism is a lifelong condition that affects as many as 1.1% of the population. Autism can be an isolating condition
This isolation is often related to inaccessible environments and societal attitudes. Due to the increase in knowledge and better recognition of the prevalence of Autism and other neurodevelopmental conditions diagnosis rates are increasing each year and many people are now receiving a diagnosis in later life.
Autism is not a mental health condition and it is not a learning disability. It is not a disease. You cannot catch it. There is no cure and you cannot treat “Autism “some of the difficulties associated with autism can be addressed with treatment such as anxiety and depression but often these are ignored as they are purely seen as part of the “Autism “
For a long time, Autism has been a condition thought to affect mainly males, often referred to as the extreme male brain it is now recognised that Autism presents differently in girls and women. Access to diagnosis is still inequitable due to the diagnostic model being based on how a male would present. Females are diagnosed much less often than males and often much later in life.
Women are now commonly being recognised after their own child is diagnosed.
Our team have been connecting with women and mothers of autistic girls for five years now and the more we connected, the more we realised that many females were not even able to access a diagnosis, due to the misunderstanding of the female presentation. Even worse if they did manage to get referred for an assessment, they were then being assessed with male-biased diagnostic tools by clinicians who had little to no understanding of the different presentations of autism in females and in those who were more gender-fluid and did not fit the tick boxes.
This lack of recognition has led to many women having their difficulties completely missed or even more worrying has led to many women being misdiagnosed with mental health conditions or personality disorders, and being over-prescribed medications, which are not recommended for Autistic individuals.
Despite new research, countless girls and women still slip through the net. It is estimated that there could be between 140,000 and 240,000 women with undiagnosed Autism in the UK alone. The failure to recognise the needs of autistic women and girls is not just poor practice, it is an equality issue.
We were extremely pleased to see that the 2018 United Nations observance focused on the importance of empowering autistic women and girls and involving them and their representative organisations in policy and decision-making to address the challenges they face. The UN showed leadership and good practice by bringing autistic women together to share their stories. We hope this will encourage policymakers and service providers to take our views and needs into consideration.
For many years’ individuals with autistic spectrum, conditions have had to deal with fragmented and unworkable service provision which means that individuals often fall through the gaps of service and are left with no support. There are very few services for adults with ASC, or other neurological differences. There are many reports of individuals being unable to find or access any useful support. Services are often set up for children and their parents or carers and once a child has finished education very little support is available.
Women who do receive a diagnosis then find that there is a lack of post-diagnostic support and services that are available are not designed to meet their needs and often have a male bias. The support that is available often has a male focus and females are too often left without any support or even recognition of their difficulties.
There is a severe lack of advocates who understand autism and current opinions and attitudes lead to many misunderstandings, fuelled by stereotypes and stigma. Autism is known as a pervasive developmental disorder because it affects an individual across all domains of development and can, therefore, impact an individual across all areas of their life creating obstacles which can be challenging but with the correct understanding and support these challenges can be lessened and, in many cases, overcome. Generic services such as debt advice, advocacy services, and counselling services have no autism training, and all these services are overworked and underfunded.
As a network, we feel it is immensely important that we help to develop platforms of support for girls and women.
A lack of representation of autistic women in research and service design over the years has led to available knowledge that is based on a narrow range of stories. Too often Autism is viewed through a purely medical model and the societal view of autism is one of extremes and negatives. We feel that by looking through the lens of the medical model you fail to gain that in-depth experience and greater understanding
This is why our project exists. We are simply Autistic Women who are reaching out to others who know and understand the challenges and barriers and together we are working really hard to increase understanding of our lives and our needs..
This is a major issue we are tackling, and we are connecting with women around the UK to get our voices heard.
We all have different talents some of us are listeners, some of us are advocates and some of us are campaigners. Others raise awareness through their creative work, and we are proud to have connected with many wonderful artists poets and musicians.
We all share our experiences in whatever way we can but whatever our role in life we all have the one aim and that is making a difference for Autistic Woman and Girls.
