Earlier this year, Amy Wizard Ponter was involved in various stages of the call for evidence for the Government's progress on the Autism Act. Here she explains what the Autism Act is, how she contributed to the review process and why more autistic people should get involved in advocating for change.

Many years ago, in 2009, the Autism Act was brought into being – a piece of legislation, built into law, requiring the government to introduce a strategy and statutory guidance to improve autistic people's quality of life. Encompassing wide-ranging aspects of life, the Autism Act aimed to make a long list of expectations mandatory. It focused on improving autistic people’s prospects in all kinds of areas, such as employment, health, the criminal justice system, assessment /diagnosis, transport and inpatient care.

The whole point of the Autism Act was a recognition of where things were then and where they needed to get to – something to measure and monitor against. All to create fundamental improvements to the lives of autistic people.

This year, a committee from the House of Lords wanted to know how well the Act is working. They sought to understand how well autistic people are supported, how easily they access life’s necessities, and how things could be improved.

Launched on ‘World Autism Acceptance Day’ in April, the committee invited feedback from people with professional expertise and autistic people with expertise from experience. As a member of Autistica’s Insight Group, I was invited to share my experiences and be a representative of the community.

As an incredibly important organisation in the autism research space, it was essential for Autistica to act (pun very much intended!). Autistica responded to the call to find the best way to involve and include autistic people in bringing the ‘evidence’ together.

Autistica invited me to contribute at a few stages of the review, including before the call for evidence was launched. I was fortunate to be involved in the following:

• Reviewing the guide created for autistic people to provide their evidence. I gave written feedback from a neurodivergent point of view, looking at the general needs of our community, making commentary, suggestions and recommendations to improve the guides.
• Extensive reading, notes and understanding of the Act. I looked at all that should have been in place, and all that clearly wasn’t, using my personal perspective, and thinking about the interests of the broader autistic community. The details in the Act were overwhelming, but also emotive; there is so much that is meant to be in place that still isn’t, all these years later.
• Contributing to a deep and mighty focus group where we had complex discussions to address the core questions posed by the House of Lords across all aspects of the Act.
• Conversations between the Autistica team and those with lived experience. The experts by experience included autistic and neurodivergent people from a wide range of backgrounds and with hugely varied and valuable knowledge and expertise.

Autistica colleagues guided the discussions into emotive and extremely personal topics in our group. The team facilitated a safe space for every person to be heard and valued, even in the face of challenging material. Plus the frustration and dismay at the numerous ways the guidance and strategy of the Act have not come to be!

The aims of the Act were and are far-reaching. I list just a few below, which matter to me the most:

• Greater acceptance and awareness of autism. Inclusivity in all things and training to enable that much-needed knowledge.
• Support with employment. Support for employers to embrace autistic people in the workplace.
• Healthcare access. Reduction of inequalities, access to support, a chance to be seen and heard and helped.
• Mental health support, including adjustments, recognition, diagnosis and tangible help.

Now, I am not saying nothing has changed. It has. In some areas of life, awareness is better. Yet, acceptance, not so much. In many cases, awareness does not mean understanding.

Equally, more employers acknowledge neurodivergence and are ‘disability confident’ or ‘disability committed’ (Whether we are to be seen as ‘disabled’ is a topic for another time!). But when it all comes down to it, many employers are ticking a box and not actually doing what they should.

Healthcare is a lottery and minefield. And mental health support? A huge gaping hole, and an urgent need for better diagnosis and tailored treatment. Not to mention whether an autistic person can even access any care in the first place, precisely because they are autistic and therefore ‘not right’ for services.

Autistica arranged powerful small group sessions covering these extremely sensitive and at times painful topics. Yet, this was so important to do, as together we brought together a body of evidence to provide the best information and feedback possible, pulled together into a comprehensive report.

Autistica is respected and has influence, so it was of enormous value that they combined our collective voices in the call for evidence. All to make recommendations to the Government to make the necessary changes that are sorely needed.