Willow’s story

Hi everybody, my name is Willow. I am one of the Autism and Neurodiversity champions here at FTWW.

I am a late-diagnosed autistic woman and have previously worked with autistic people in residential care. I have used my lived experience following diagnosis to increase understanding of autistic people’s lives.

I founded The Autistic Women’s Empowerment Project in 2014 as an awareness-raising project, and since then my personal roles and the AWE Project have evolved beyond recognition. What I thought would just be a social media page has led me to campaign for recognition, acceptance, and equality for autistic women and girls across Wales.

I now wear multiple hats and work with lots of organisations here in Wales, all my roles are very focused on strategic development, stakeholder engagement, and representation.

I also act as a lived experience advisor at a national level in Wales, working regularly with the Welsh Government through The Ministerial Advisory Group on Neurodivergence, The Disability Rights Taskforce, and The National Autism Team.

I joined Fair Treatment for the Women of Wales shortly after it had formed, as our founder Debbie Shaffer was supportive of my campaigning. We recognised just how important it was that we made FTWW accessible and inclusive for autistic and neurodivergent people and gained greater understanding of autistic women and girls healthcare experiences.

Like many autistic women, I also have multiple chronic health conditions and have experienced many difficulties accessing healthcare due to a lack of understanding of my needs as an autistic woman. My conditions can present differently due to the different ways I process sensory information and pain. This has led to many of my conditions being overlooked and treatment delayed.

I have become a very strong promoter of the Social Model of Disability, co-production, and the involvement of neurodivergent and disabled people in all decisions that affect their lives. I feel that it is essential that services are made accessible for all and for this to happen we need to hear the voices of those who access the services to truly understand the barriers they face.

My work has a big focus on health and wellbeing. I co-wrote a section for the Women’s Health Quality Statement with my colleague Kat Williams. I have also worked with Betsi Cadwalader University Health Board using my lived experience to help implement the Code of Practice on the delivery of Autism Services and have worked closely with BCUHB’s Equality Team developing sensory bags for children in the urgent care departments and a sensory guide for Bangor Hospitals accident and emergency unit.

I am not afraid to tackle difficult topics that often get overlooked and am currently sitting on research and strategy panels discussing suicide prevention, domestic abuse, and sexual violence

I am also really proud to be playing a leading role in developing new methods of co-produced research through my role of Community Leader on The Autism from Menstruation to Menopause Study at Swansea University