Willow, women and effective ‘autivism’ in Wales

After 4 years and a long battle to have her condition recognised Willow, a proud Welshwoman, was diagnosed as autistic at the age of 44. Up until that point she had struggled to understand who she was and why she could not connect with people the way that others did. As a teenager, professionals believed Willow’s daughter was experiencing challenges with her mental health. But Willow was convinced her daughter was also autistic.

She presented in similar ways as I did when I was a child

After another hard battle Willow’s daughter also got an NHS diagnosis of autism.

Willow the ‘autivist’ and campaigner

Following the poor NHS experience of her daughter Willow wrote a post on Facebook, expressing her anger and concern. The post had a huge response with people across the country getting in touch to share similar experiences.

I realised it wasn’t just me. It wasn’t just my daughter

The post became a Facebook group and the group started to link with autistic people who were campaigning for change. The Facebook group became a movement and the Autistic Women’s Empowerment Project (AWE) was born.

Willow was conscious that her strong knowledge of autism gained from personal experience was not enough. She decided to undertake extensive
training to enhance her knowledge.

Her activity brought Willow into the political arena and she was offered opportunities to speak about issues related to autism. Raising her profile resulted in people making contact. Willow helped people who contacted her and signposted them to sources of advice. This led to a growth in the network that continues to this day.

When I first got diagnosed, I had 5 people in my network. I have a huge network now

Willow and AWE have also worked alongside others to develop an annual autism conference for North Wales.

What helped?

In the early days Willow was supported by key third sector organisations such as Disability Wales, Autistic UK and AA Autism support.

At the start I needed help to go to meetings. I can handle them on my own now

She has also been supported by Mark Isherwood, Welsh Assembly Member for North Wales who is also the chair of the Cross-Party Group on Autism. Willow is helped to run AWE by her daughter, her friend Liz and by other members of the network.

Challenges

Willow has multiple, chronic health conditions that limit her mobility and ability.

Finding the energy to do anything can be difficult

Often Willow is asked to contribute to activity, advise people or speak at events free of charge. Currently Willow gives a great deal of time for free and funds activity herself.

We are valued enough to advise people and speak at events but not valued enough to be paid for our time

It can be stressful advising and supporting people, including those at crisis point, especially at a time of austerity when there are few services available.

The Facebook group is going every hour of the day and night… you hear people’s very worst experiences. When you deal with people who are constantly in crisis it can really impact on you. I have to learn to build a protective bubble around myself

Achievements and impact

Willow has developed a huge peer network of people who share and support each other. This has helped her to connect with other people and has led to self-awareness and self-acceptance.

Having the network doesn’t just help other people it helps me as well. I now feel able to speak on a public platform

Willow has contributed to the draft Autism Wales Bill and has become a Bevan Advocate. The annual autism conference is successful and now in its 4th year. Through her work the experience of autistic people across Wales has changed for the better.

Things have changed…The Welsh Government are changing their language and engaging more. They are launching a national engagement strategy to connect better with autistic people

The future

Willow would like to turn Autistic UK, a voluntary organisation for which she is on the board, into a sustainable CIC with secure income. She would like to set up a hub for autistic people in her hometown of Llandudno and establish an on-line resource hub for people from the autistic community.