Carly Jones MBE: Autism in Women

On Wednesday 14th October 2020, NU Women welcomed Carly Jones MBE at a virtual event where she spoke on the experiences of autistic women and girls.

Carly Jones MBE is a British Autism Advocate who has worked for the inclusion of autistic women and girls since 2008. She has spoken on news channels, at universities, and in Parliament, and was the first British autistic woman to address the United Nations on autistic women’s rights. 

Carly was publicly appointed a member of the UK Honours Committee, is an independent panel member for the Ministry of Justice and works for the Heathrow Accessibility Advisory Group.

Demystifying Autism in Women and Girls

Being diagnosed with autism can be a difficult and conflicting experience. Carly spoke to the importance of diagnosis: the access to support that a diagnosis provides, the assurance that you are not alone in your diagnosis, how it can help with family understanding, and how it can provide self-protection.

Carly spoke of the hurdles that women and girls can face in getting diagnosed – autism is often seen as something that is only recognised in boys, and as such, diagnosis tools are often predominantly male-based, leading to women and girls risking being under-diagnosed and left behind, leaving them vulnerable.

There are numerous consequences of being undiagnosed or misdiagnosed – misdiagnoses can lead to the incorrect medication being prescribed, or incorrect diagnoses remaining on medical records. People with autism are often not included in drug trials, so there is a lack of understanding as to how various medications might work (or not work). Carly noted that annulment of prior misdiagnoses is vitally important, as past diagnoses may be raised in family courts.

Carly spoke to the way that people with autism might respond to pain and articulate it – it is important to ask direct and clear questions about an individual’s pain, and explain why they are being asked this. An app has been developed by Carly that can be vital in helping those who struggle to communicate their pain – the app provides images of what pain may “look like” so as to help define and describe what kind of pain is being experienced. The app can be downloaded here:

Carly also noted the importance of understanding that an individual’s position on the autism spectrum is never fixed – your position can move depending on the context or on your emotions at the time.

Strategy to Safeguard and Flourish

For the second half of the talk, Carly moved on to discussing approaches, ideas and tactics for safeguarding and supporting autistic women and girls.

Carly noted that it can be hard for people with autism to ask for help: it can be difficult to know when you need help, or people might “mask” as a desire to fit in.

Pre-emptive safeguarding is one way to provide support: asking clear and explicit questions everyday – such as “what was the best/worst thing that happened to you today” – can help to ensure that an individual will know that they are able to talk with you when needed, and to draw out the nuances of their daily experiences. The Visual Pain Images app mentioned above can be a useful tool, and it is also important to ensure that people understand their bodily rights and boundaries early on in life.

Emergency plans are also important to put in place: implementing a “get me out of here” emoji that can be sent if someone is in a situation they are uncomfortable with, or using the “Uncle Kev” trick – if someone notices that they are being followed, a potential way to get out of the situation is to wave at the nearest house and shout “Uncle Kev”. This can deter the person following you, as they will assume you are with an older family member, and can give you a chance to make a call or knock on the door of the house until the coast is clear.

Carly finished her talk by looking at a selection of case studies, emphasizing various situations in which people with autism might be taken advantage of, and ways to help avoid this.

NU Women thanks Carly for her important and informative talk. Carly’s website can be accessed here:

Her Twitter handle is @CarlyJonesMBE

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