In my capacity as an autism commissioner across health and social care, I spoke to the mother of a 17 year old girl with autism, who was out of school, self-harming and suicidal. She was too anxious and depressed to leave the house; she barely spoke. Soon after starting senior school, she fell out with her friends, and her whole world crumbled. While the school treated this like an ordinary falling out between friends, she described herself as an alien and didn’t see the point in being alive. She was offered Dialectical Behaviour Therapy (DBT), but stopped attending after the practitioner laughed at her for sleeping in her parents’ room to stop herself from cutting. It was the only place she felt safe.
When she was admitted to hospital, she felt worse, a long way from home, being cared for by staff who didn’t understand autism and made sarcastic jokes that she didn’t understand. She felt abandoned by her community teams: she was out of her home area and they didn’t come to her discharge planning meetings. She said to her mum, “Nobody cares about me, do they?” Once at home, she was offered four hours a week of support and was handed a directory of organisations providing the workers. Many of these companies didn’t work with young people with autism and of those that did, the people offered weren’t suitable for a 17 year old girl who wanted to go to Alton Towers and get a tattoo.
I started asking questions and spent hours talking to individuals, families, clinicians, schools, social workers and commissioners. The more I spoke to people and the more I heard about the waiting, gaps and blockages in services for people, the more overwhelmed I felt by the size and complexity of the challenges, stretching from early years to the end of life. I didn’t have faith that the local authority, NHS or education systems could respond in the radical way needed to address these problems. Young people and adults weren’t eligible for or able to access any support until things were at crisis point. The support that was made available at this point was prescriptive and made people feel they needed fixing and that their parents were to blame. I felt hopeless.
The frustration, anger, injustice and exhaustion I heard when speaking to families and individuals, and often professionals, weighed heavily. I felt responsible for starting the process of turning things around, but I felt small and insignificant. It felt like I was trying to turn a huge tanker around with an oar.
I was inexperienced as a commissioner and didn’t know what to do or where to start. Influential people with the power to help change these systems needed to hear what was really happening, and I was scared that I couldn’t make them understand. I was worried that I would end up having no impact, leaving things exactly as I found them, and leaving people with autism and their families to fall further into crisis.
I couldn’t stop asking difficult questions of services and individuals, even though it made some people uncomfortable. I asked awkward questions when I knew that some services would prefer to tweak what was already in place, rather than transforming it. I heard more stories from families and professionals that made me wonder if I would be able to have more of an impact from outside the NHS and Local Authority.
I understood how specialist services like hospitals worked, much better than I understood community support systems like The Girl with the Curly Hair Project and charity youth groups. I realised that we were focusing too much on trying to understand the crisis end of the journey, when things have already gone badly wrong and people felt stuck and hopeless being assessed and offered interventions from safeguarding, mental health services, alternatives to school… I saw that, while people needed help from professionals when they are ill, we also needed to do the work to stop people from entering services in the first place. I began to move my attention to the times when individuals with autism and their families are in a position of strength and stability. I want to understand what we as commissioners can do to support them to stay there.
I am trying to learn more about what helps things go well for people with autism and their families. Now, instead of being overwhelmed, I am exploring specific examples of what’s worked in families and communities, whether these are tiny tweaks or enormous shifts. I want to know how positive changes have been made and who made it happen. I want to find specific ways that we commissioners can support communities to do more of this work, and how we can stop getting in the way.
About the author:
I’m Olivia Horgan. I originally shared this piece in person on a walk arranged by community organisers to explore the experiences of people with autism, and of those who lived or worked in the systems around them. I have experience as an integrated commissioner across health and social care, a project manager, service lead, and a clinician in the NHS. I have worked across mental health, learning disability and autism services. I am now self-employed and exploring new ways of working with commissioners, services and communities to discover how I can contribute to making things better. I am really interested in finding new ways to establish relationships across all these sectors, experiment with new approaches and challenge the status quo. I am always happy to connect with people for a chat.