Not Just Words on Slides: My Experience at the Autism Partnership Board

Attending the Autism Partnership Board for the First Time

Attending this meeting for the first time meant a lot to me, it enabled me to bring my own experiences of the systems failures to light. On Monday 23rd June 2025, for the first time, I attended the Autism Partnership Board Meeting for the local council. It’s a multiagency meeting with autistic self-advocates, Sussex Police, Commissioners, Social Care and the NHS.

Speaking from Lived Experience

I spoke at the meeting and had input into local policies that contribute to the local autism strategy. It’s vital that support systems are created in collaboration with people who have lived experience. Co-production isn’t something to be added at the end, it should shape everything. Why should we be silenced just because of a label? Imagine if you were constantly excluded. How would you feel?

Only we know what the system feels like from the inside, so its only us that can speak up. What would our support systems look like if autistic people were involved at every stage of decision-making?

When Legislation Doesn’t Match Reality

During the meeting, they delivered a presentation about the Care Act 2014 and the council’s legal obligations, such as involving individuals in Care Act assessments. Each slide explained how processes must be done lawfully.

I spoke with the Commissioning and Performance Manager and Autism Lead, where I raised how Adult Social Care do not follow these processes in practice. From my own experience, Adult Social Care cut my support hours from 24 hours to 8 hours a day last year without involving me or any of the professionals who knew me.

That is a clear contradiction of the Care Act. I said that those of us with lived experience should be given the opportunity to offer constructive criticism. So, I asked the question I had been holding onto. How does the council apply these principles in practice?

Imagine sitting there hearing about your entitlements, while knowing you’ve been repeatedly failed and disregarded by the care system. Most importantly, what needs to change so that legislation like the Care Act is not just words on slides, but something people actually experience in practice?

Discrimination in Housing and Social Care

I also spoke about the need for better education within social care and housing, because discrimination exists. Some landlords don’t want to take on autistic tenants or anyone on benefits. This delays hospital discharges and traps autistic people in environments were we don’t belong.

I asked Adult Social Care what are they doing to improve this barrier. They said they are working with landlords to raise awareness. A start, but far from enough.

Challenges with Mental Capacity

We also discussed specialist teams, including the Deprivation of Liberty Safeguards (DOLS) Team. I mentioned that when someone lacks capacity, professionals make decisions for them.

Meanwhile when someone has capacity, they still often don’t get to make their own decisions. I’ve even had professionals make decisions, ignoring my voice even though I had full capacity to decide myself. I had a social worker who made a decision to reduce my support hours without consulting me, even though I had capacity to decide this wasn’t right for me, the social worker still dismissed my wishes. It was a pure abuse of power.

So, I’ve seen this myself and explained how professionals can misuse the Mental Capacity Act, using it to their advantage rather than empowering the individual.

Empowered, Yet Overwhelmed

It felt both empowering and intense to sit alongside so many professionals. I was masking throughout the entire meeting because all I wanted to do was point out the hypocrisy. It was overwhelming trying to stay calm while knowing how the system disables us in so many ways.

It felt empowering and gave me a boost knowing I was able to speak up, because it wasn’t just improving my situation, but it is giving a voice to thousands of other autistic people who are facing similar barriers to accessing support. I’m only one example of many other people going through the same thing, day in and day out. This makes me do my advocacy work with pride.

I came out of the meeting knowing I had questioned decision-makers about current practice, which made me feel proud of my mission to drive change.

Being part of shaping change for autistic people feels incredibly rewarding. Lived experience isn’t just a perspective, it is expertise. It deserves a seat at the table every single time decisions about autistic people are being made.