Dear Prime Minister,

As you step into one of the most powerful positions in the country, you will inherit countless reports, reviews, consultations and recommendations relating to autism and SEND. You will be told that awareness has improved, that society understands autism better than ever before, and that progress is being made. On paper, it may even look that way.

However, I would ask you to look beyond the reports and speak directly to autistic people and their families. Ask them whether the reality of daily life reflects the progress that successive governments have been claiming for years. Ask the parents who are still fighting for educational support. Ask the autistic adults who are still struggling to access healthcare that understands their needs. Ask the children who are masking their difficulties until they reach breaking point. Ask the people who have spent years being misunderstood, misdiagnosed or simply ignored.

If so much has changed, why are so many of us still fighting the same battles?

There is a quote often linked to Albert Einstein which says, “Insanity is doing the same thing over and over again and expecting different results.” Whether he actually said it or not is irrelevant because the principle perfectly describes the situation we are in. For decades we have produced reports, introduced policies, renamed services, launched initiatives and held consultations. The language surrounding autism has evolved. Awareness campaigns have increased. Training programmes have expanded. Yet when you strip all of that away and look at outcomes, too many autistic people and their families are still describing the same struggles they were describing years ago.

We have to start being honest with ourselves – if the outcomes remain poor despite decades of discussion, perhaps the problem is not a lack of awareness. Maybe the problem is that we continue approaching autism from the same direction. We continue trying to understand autistic people mainly from the outside looking in, and then wonder why the solutions we create fail to address what life is actually like on the inside.

I want to make this very clear in my point: Parents of autistic children deserve to be heard. The challenges they face are real, regardless of whether their child is non-speaking, highly verbal, diagnosed early, diagnosed late, has intellectual disabilities, does not have intellectual disabilities, masks heavily or struggles in ways that are immediately visible. Families across the country are exhausted from constantly having to fight systems that should already be supporting them.

What concerns me is that autistic voices are still too often treated as secondary within conversations about autism. Historically, autism has been viewed through the eyes of professionals, researchers, services and families. Those perspectives all matter, but they are not a substitute for lived experience. In recent years, we have seen growing numbers of autistic adults speaking openly about masking, burnout, sensory overwhelm, trauma and the cumulative impact of spending years adapting to environments that do not understand us. We now have knowledge that did not exist in the public conversation a generation ago.

The frustrating part is that despite this growing understanding, autistic people are still not consistently listened to when decisions are being made.

I know this because I experience it myself.

I am able to explain my difficulties clearly. I can explain sensory overwhelm, burnout and the impact of misunderstanding. I can identify barriers and suggest practical solutions. I can explain the effect these issues have on my health and wellbeing. Yet despite being able to communicate these things directly, I still encounter professionals and specialists who fundamentally misunderstand what I am saying. These are people who have received training, hold qualifications and are considered experts within their fields, yet there remains a clear gap between understanding autism academically and understanding what it is like to live it.

That gap matters because it has consequences.

When autistic people are not listened to, health deteriorates, stress accumulates, and burnout becomes much more likely. Mental wellbeing suffers, opportunities are lost, potential is wasted – and these are not abstract concepts. They are realities that autistic people experience every day.

What troubles me most is not what this means for me but what it means for those who are less able to advocate for themselves. If an autistic adult who can clearly explain their experiences is still not being listened to, what chance does a child have? What chance does an autistic person have who has not yet found the language to explain what is happening to them? What chance does a person have when they are already overwhelmed, exhausted and struggling simply to get through the day?

This is why autistic voices need to be central to the conversation rather than added as an afterthought. Not because autistic people hold all the answers, but because meaningful solutions cannot be developed while excluding the people living the reality every day.

One of the reasons I feel so strongly about this is because I have seen the difference that listening can make. Through my artwork, my projects and my advocacy, I have helped parents better understand their autistic children because I can explain experiences that many autistic people struggle to put into words. I have helped autistic people feel seen because they recognise themselves in what I create. I have helped teachers, civic leaders, prison governors and organisations develop a deeper understanding of neurodivergence through lived experience. The point is not that I am unique. The point is that these outcomes were achieved because people were willing to listen.

That should matter to the government.

If listening to autistic people can improve understanding in schools, communities, prisons and organisations, why are autistic voices still not consistently shaping the systems that affect our lives most? Why are decisions still being made about us rather than with us? Why are autistic people so often consulted after decisions have already been made instead of being involved from the beginning?

The evidence is already there. We do not need another decade spent proving that autistic voices have value. We need leaders who are willing to act on what autistic people, parents, researchers and frontline professionals have already been saying for years.

We also need a serious conversation about accountability. The Equality Act 2010 already exists. The issue is not a lack of legislation. The issue is that rights mean very little when they are not consistently upheld. Policies mean very little when they fail to improve outcomes. Inclusion means very little when autistic people continue facing barriers that should not exist.

Maybe the most alarming evidence of this failure can be seen in research relating to suicide among autistic people. Statistics showing alarmingly elevated suicide risk should not be viewed as unfortunate numbers in a report. They should be viewed as evidence that many autistic people are experiencing profound levels of distress. If those figures do not force us to question whether our current approach is working, what will?

Prime Minister, autism does not need another awareness campaign. It does not need another rebrand. It does not need another consultation whose recommendations are quietly filed away. What it needs is leadership that is willing to listen, willing to challenge assumptions and willing to act.

The people closest to the problem are often closest to the solution. For too long, autistic people have been discussed, analysed and represented while being denied meaningful influence over the decisions that affect their lives. If we continue doing that, we should not be surprised when the outcomes remain the same.

After all, if doing the same thing over and over again while expecting different results is insanity, perhaps it is time we finally tried something different.

The next Prime Minister has an opportunity to do exactly that.

The question is whether you will.

Best Wishes

Dez – Loveartpix