I talk a lot about communication because communication has a huge impact on my life. Clear communication can be the difference between me being able to process something and becoming completely overwhelmed by it – something I explain constantly. I explain what helps me, what does not help me and why certain ways of communicating affect me. I explain what small adjustments make a huge difference. Yet one of the things I still struggle to understand is why, despite explaining it so clearly, I am continuously ignored.

I am not only talking about people I meet occasionally or organisations that barely know me, although that should not excuse it either. I am talking about people who genuinely know me, people I have spoken to about autism and people I have explained my own experiences to. People who cannot realistically say that nobody ever told them. And still it happens.

I understand that people are busy, I really do. My life does not stop from the moment I open my eyes until the moment I close them, so I understand pressure, distraction and forgetting things. My mind is busy by nature. It is how I experience the world, I never really switch off. There is always something being processed internally, so when I say I understand what it is like to be busy, I mean it. But there comes a point where “people are busy” cannot explain everything.

If somebody repeatedly tells you that something causes them distress and the same thing continues happening, at what point does this stop being a communication problem?

I question almost daily whether my presentation affects the way people respond to my disability. I can speak. I can explain my autism. I can educate other people about it. I don’t have a learning disability. I create projects, share my experiences in groups and online, and advocate for change. Does that make people subconsciously believe that the things I describe cannot really affect me as much as I say they do?

Research into autistic people’s experiences repeatedly shows that needs are underestimated when difficulties are not immediately visible. What somebody looks like from the outside can carry more weight than what that person is actually telling you about what is happening inside them.

That leaves me asking something I have asked many times. If I had the physical appearance that many people still associate with disability, would people react differently?

Because if my ability to articulate what is happening becomes evidence that I must be coping, that creates an impossible situation. I have spent years learning how to explain myself. Why should becoming better at explaining my disability make the disability easier for somebody else to dismiss?

You do not have to fully understand somebody’s experience to believe them. You do not have to experience the world in the same way I do to show compassion. Yet far too many times I see ignorance shown before compassion. “I don’t understand why that would affect you” somehow becomes more powerful than me saying, “It does.” If somebody tells me something hurts them, I do not have to understand that pain before I accept that it exists.

This is also where I think society avoids a much harder truth. Disability does not exist in isolation from the world around us. Society does make somebody’s daily struggles more debilitating through the environments it creates, the expectations it places on people and the refusal to make adjustments even after somebody has clearly explained what they need.

The definition of disability itself makes this impossible to ignore. Under the Equality Act 2010, a person is disabled if they have a physical or mental impairment that has a substantial and long-term negative effect on their ability to carry out normal daily activities. But that legal definition is only one part of the picture. The World Health Organization explains disability through the interaction between a person and the world around them. It recognises that inaccessible environments, attitudes and lack of support affect the level of disability somebody experiences and states that a person’s environment has a huge effect on the experience and extent of disability.

That means society is not standing neutrally around a disabled person while they struggle with something entirely contained inside themselves. Society does increase the level of disability a person experiences. Poor communication increases it. Inaccessible environments increase it. Ignoring sensory needs increases it. Refusing adjustments increases it. The attitudes people hold and the systems people are forced to navigate increase it. Remove unnecessary barriers and the daily impact can be reduced. Keep those barriers in place and society makes somebody’s existing disability more debilitating.

We already know this. It is in the definitions, the guidance, the research and the lived experiences people have been sharing for years. So when society knowingly maintains barriers that make disabled people’s lives harder, it needs to stop pretending the whole problem exists inside the disabled person.

What makes this even harder to process is that we are not short of evidence. We have decades of autistic people describing their experiences. We have research. We have guidance. We have facts. We have enough understanding to know that environment, communication, attitudes and expectations have a direct impact on disabled people. Yet it still feels easier to preserve the status quo and talk about change than actually implement it.

The World Health Organization recognises that disability is affected by the environment around a person and the barriers society creates. NICE guidance recognises that autistic people can be affected by sensory environments, but this cannot be reduced to the stereotypical conversations about bright lights and loud noises. Communication itself is part of the environment. How information is given matters. How much information is given matters. The time somebody is given to process it matters. Predictability matters. Being clear rather than vague matters. Recognising that somebody may communicate better in writing matters. These are communication differences, and yet even when somebody tells people exactly what helps them, the expectation is still too often that the autistic person adapts.

So how much more “awareness” are we actually waiting for?

We already have awareness. We have understanding. We have research, evidence and facts. The problem is not that nobody knows autism exists or that nobody has ever heard autistic people describing these things. The problem is turning what we know into what we actually do.

That is where responsibility enters this conversation. Implementation means somebody has to change. An organisation has to change a process. A professional has to question the way they have always communicated. A friend or family member has to remember that what feels completely normal to them can have a completely different impact on me. Maintaining the status quo asks nothing of them. The cost of that is then pushed back onto the disabled person who is already carrying enough.

For more than two decades I was under the mental-health services before receiving my autism diagnosis. For years I was describing the same difficulties. I knew something was happening to me even when I did not have the language or understanding to explain why.

One sentence from those years has never left me. It came from my psychiatrist, the person I was going to for care and support. This was not somebody I had casually mentioned my problems to. This was the highest level of care available to me. When I was struggling and needed help, this was where I was supposed to go.

I was told, “Look Dez, you’ve been with us for years. What else do you want us to do for you?”

Imagine what that does to somebody.

I had already spent years telling the system that something was wrong. I did not understand autism. I did not understand masking or why the world affected me in the way it did. I only knew that I was struggling and the people I had been told to go to for help did not understand why. Then the person at the highest point of my care told me they had done everything they could and asked what else I expected them to do.

Where was I supposed to go from there?

When the people whose role is to help you cannot understand you, how many times can you be treated as the problem before you start believing that you are the problem?

That does damage. Research into invalidation shows that repeatedly having your experiences dismissed affects people emotionally and damages the relationships they are supposed to be able to trust. Research into internalised stigma shows that repeated negative messages become incorporated into how somebody sees themselves. If you spend years being treated as though you are the problem, eventually that message gets inside you.

Then we need to ask what twenty years of that does to somebody, and we need to stop being frightened of connecting that question to the suicide statistics we already know exist.

Autistic people are at significantly increased risk of suicide. We know that. So why are we still prepared to talk about the statistic without looking hard enough at what happens before somebody becomes a statistic How much damage does repeatedly asking for help and coming away believing there is something fundamentally wrong with you do? What happens when the place you are told to go for support leaves you feeling more hopeless than when you entered it?

We cannot keep behaving as though suicide appears from nowhere. We cannot publish statistics about autistic suicide, tell people to reach out and then refuse to look at what happens when they do reach out and are repeatedly misunderstood.

For me, the mental-health system did not just fail to understand the trauma. It became part of the trauma.

Research now uses the term institutional betrayal to describe harm connected to an institution somebody depends upon failing them through what it does or fails to do. Research involving psychiatric care has linked these experiences with reduced trust in professionals and reduced willingness to disclose distressing thoughts or engage with care again. That is an enormous contradiction. Somebody reaches the point where they need help, has an experience that damages their trust in the very system meant to provide that help, and then when they are struggling again society tells them they need to reach out.

We cannot keep excusing that.

The same problem happens in everyday relationships, and sometimes the examples sound so small that somebody looking from the outside might not understand why they matter.

I explained to somebody whose son is autistic that when I am struggling, saying “I’m here if you want to talk” does not help me. What is happening for me during those moments is already internal and sensory. Speaking adds another external stressor. My brain is already trying to process what is happening internally, and adding a conversation means I now have to process another person’s communication while somehow translating what is happening inside me into words.

I explained that very clearly.

Then one day this person asked how I was. I said I wasn’t great. His response was “I know you’ve told me this doesn’t help, but I’m here if you want to talk.” That is not somebody who did not know – He knew. He actually confirmed in the same sentence that he knew. So this is where I have to put it as plainly as possible. If I tell somebody not to hit me in the face because it hurts, they tell me they understand, and then they hit me in the face anyway, we would not describe that as a misunderstanding. We would not tell me that maybe I needed to explain it more clearly. The fact that the harm here is neurological, sensory or emotional does not make the principle disappear.

I told you it hurts me. You acknowledged that I told you. Then you did it anyway – thats the problem.

And this is where something else happens which I find incredibly difficult to process. The person can cause the distress, but if I react to the distress they have caused, I risk becoming the problem. Somebody ignores something I have repeatedly explained and it triggered me into overwhelm, frustration or anger. Instead of looking at what caused that reaction, attention moves onto my response. Now I am too direct, my tone is wrong, I’m too angry. Now somebody else feels attacked. The person whose actions caused the distress suddenly becomes the person being protected from the reaction to that distress, while the person who was harmed is treated as the aggressor.

That is completely backwards.

I have experienced this enough times that I know I have to think about how carefully I explain that somebody has hurt me – despite being in mental turmoil. I’m the person experiencing the impact and still end up managing the feelings of the person I am explaining the impact to. If I am too direct, my directness becomes the conversation. If I am frustrated because I have explained the same thing repeatedly, my frustration becomes the conversation. What caused it gets pushed aside.

This is where communication becomes much bigger than communication for me. It becomes about morality. Why does the person who has caused the harm so easily become the focus the moment the person being harmed reacts to it? Why are we more comfortable questioning the reaction than questioning what caused it?

That is exactly how people end up questioning themselves.

Society constantly tells people to speak up. We are told to reach out and talk to somebody. Organisations tell us they are listening. These messages are everywhere, but society spends nowhere near enough time examining what happens after somebody does exactly what they were told to do.

What happens when somebody reaches out and nothing changes? What happens when somebody explains the adjustment they need and it is ignored? What happens when somebody spends years explaining themselves until eventually they no longer believe there is any point?

This is why so much of the language around awareness frustrates me.

We are aware. We understand far more than we did. We have research. We have evidence. We have facts. We have autistic people explaining their lived experiences every single day.

What exactly are we waiting for?

Awareness without action changes nothing. If an organisation understands that communication differences can disable an autistic person and still refuses to adapt its communication, the awareness means nothing to the person absorbing the impact. If a service asks somebody what adjustment they need and then ignores what they have said, asking the question was pointless. If somebody close to me knows what helps and repeatedly chooses what feels normal to them instead, knowing about my autism has achieved nothing.

This is one of the hardest realities for me personally.

In my circle of friends and family, I can genuinely count on less than one hand the people who consistently take this seriously, support me and consider the small adjustments that make such a massive difference to my daily life.

Less than a handful.

Considering how much I explain autism, both professionally and personally, that speaks volumes.

Even professionally, I regularly deal with people and organisations who know what I do, know what I talk about and know why communication matters to me, yet I still experience the same basic issues. 

So this cannot continuously be explained away as people simply not knowing. At some point we have to accept that knowing something and taking it seriously are two completely different things.

Society has enough knowledge now to understand that it makes disability more disabling. My autism does not disappear if somebody communicates clearly with me. My sensory processing does not disappear because an environment is adjusted. But the daily impact can be massively reduced when the world around me stops creating unnecessary barriers.

The opposite is also true.

When people communicate badly despite knowing what helps, when environments repeatedly overwhelm somebody despite knowing the impact, or when systems force a person to function in ways that directly conflict with how their brain processes the world, society adds to that person’s disability.

Then we call the person difficult and that has to change.

This becomes even harder for me when I think about children.

I am 47 years old. I understand far more about myself now than I ever did when I was younger. I can make logic of and understand how my brain processes the world. I can explain what has affected me and why. When speaking is difficult, I can write it down. Yet even with all of that, in my personal and professional life I still struggle to get people to take something seriously which I explain constantly.

So what chance does a child have?

What happens to an autistic child who knows something feels unbearable but does not understand why? What happens when that child cannot explain what needs to change and adults interpret the behaviour from the outside? What happens when the adults get that interpretation wrong?

We already know environments and communication affect autistic children. We already know behaviour can be communication. We already know sensory and processing differences have an impact. Yet children are still expected to fit into systems which repeatedly show them that the way they experience the world is the problem. Then we wonder why they struggle and why so many eventually end up inside the mental-health system – or worse. 

That is the part I cannot ignore.

If we recognise problems early but keep forcing children through environments that make those problems worse, what exactly are we expecting to happen later?

Research around autistic people’s experiences describes something called epistemic injustice. In simple terms, somebody else’s interpretation of an autistic person’s experience is given more credibility than the autistic person’s knowledge of themselves. Autistic adults describe being doubted so much that eventually they begin doubting themselves.

I know exactly what that feels like because I lived it for decades. Now imagine expecting a child to fight against that when they do not even have the language to explain what is happening – or the adult educated enough to understand it. 

If an adult who understands his autism, researches it, talks about it professionally and personally and can clearly explain what is affecting him still struggles to be heard, what chance does the child have who does not yet have those words?

I have spent a lot of time trying to understand why this keeps happening. I know people forget and I know people are busy, but there is a point where those explanations stop being enough. There is also a point where “we didn’t understand” stops being an acceptable explanation when somebody has already explained it to you repeatedly.

Maybe my presentation means people underestimate what I am telling them. Maybe somebody cannot fully comprehend an experience they have never lived. But you do not need to fully understand somebody to show them compassion, and you do not need to experience somebody else’s pain before you believe them when they tell you something hurts.

Once somebody has told you, you know and that knowledge gives you responsibility. This is where society needs to stop hiding behind awareness. There is already overwhelming evidence that environments, attitudes and communication affect disabled people’s lives. Disabled people have been explaining it for generations.

The problem is not that nobody has spoken, because people have been speaking for decades. The problem is what happens after people speak. Talking about change is easy – Implementing change means accepting that the person telling you something may actually require you to change your own behaviour.

That is where things become uncomfortable. But discomfort is not an excuse for continuing to harm somebody.

After more than two decades of explaining myself, receiving my autism diagnosis and finally beginning to understand what has been happening to me throughout my life, I am still left asking the same genuine question: if somebody clearly explains what is hurting them and people continue doing it anyway, what more is that person supposed to do? And perhaps the bigger question is what communication actually means if the person speaking carries all of the responsibility for being understood while the person listening carries none of the responsibility for what they do with what they have heard.

This is bigger than autism. It is about what kind of society we have created. A society that tells people to speak and then does not listen cannot keep blaming people when they eventually become silent. A society that has awareness, understanding, research, evidence and facts cannot continue behaving as though the problem is that we simply need more awareness.

And a society that knows its systems and environments make people’s daily struggles more debilitating needs to stop asking disabled people why they are struggling and start asking why, with everything we already know, we are still making them struggle this much.

You do not have to understand everything somebody experiences. But once they have told you it hurts, you cannot say you did not know.

Research and further reading

World Health Organization, Disability.

https://www.who.int/health-topics/disability

UK Government, Definition of disability under the Equality Act 2010.

https://www.gov.uk/definition-of-disability-under-equality-act-2010

NICE, Autism spectrum disorder in adults: diagnosis and management.

https://www.nice.org.uk/guidance/cg142/chapter/recommendations

NICE, Autism spectrum disorder in under 19s: support and management.

https://www.nice.org.uk/guidance/cg170/chapter/recommendations

Lewis, Lee, Zabelski & Shields, Institutional Betrayal in Inpatient Psychiatry: Effects on Trust and Engagement With Care, Psychiatric Services, 2025.

https://pubmed.ncbi.nlm.nih.gov/39529497

O’Halloran et al., The global burden of suicide mortality among people on the autism spectrum: A systematic review, meta-analysis, and extension of estimates from the Global Burden of Disease Study 2021, Psychiatry Research, 2024.

https://pubmed.ncbi.nlm.nih.gov/39197224

Newell et al., A systematic review and meta-analysis of suicidality in autistic and possibly autistic people without co-occurring intellectual disability, Molecular Autism, 2023.

https://pubmed.ncbi.nlm.nih.gov/36922899

Research examining validation and invalidation and their emotional and physiological effects.

https://pmc.ncbi.nlm.nih.gov/articles/PMC9116024

Research into sensory and communication barriers experienced by autistic adults in healthcare.

https://pmc.ncbi.nlm.nih.gov/articles/PMC8992902

Research examining autistic people’s experiences of healthcare, self-doubt and epistemic injustice.

https://pmc.ncbi.nlm.nih.gov/articles/PMC11191657

NHS England, Accessible Information Standard.

https://www.england.nhs.uk/long-read/accessible-information-standard-requirements-dapb1605