Thorsten Padberg

So much damage is done by the idea that there is a majority of people for whom life is straightforward. The world was designed for them, they effortlessly comply with societal demands and get over their life stresses easily. They never wonder whether there is something different about them, or criticise themselves for minor failings. They sail through school and work. They have meaningful relationships with only transient conflict. Their emotions are manageable and in proportion. They are round pegs in round holes. The neurotypical Some people look like this from the outside. Hardly anyone reports being like this from the inside. Yet more and more books and training programmes promote the idea that if you’re not like this, you must be neurodivergent. Wired differently. We have pathologised the human condition.

In the UK, we have a waiting list for autism assessment of 295,000 people. This is the size of Belfast. It seems like one of the ideas that we have imported from the US is the idea that a diagnosis is essential to ensure a person gets the help they need from the education and health system. People talk all the time as if an autism diagnosis will now mean they can get the right support. I’ve been told by several people that if they are not included in the autism spectrum, they will get nothing. They think that an autism diagnosis is the only route to help. It’s not surprising that this is driving up demand for diagnostic assessment. But in reality, an autism diagnosis tells us almost nothing clinically. It is too broad. We can’t design effective services for a diagnostic group which is so heterogenous. People who expect specialist services after diagnosis are mostly doomed to disappointment. The majority of NHS resources for autism are being taken up by diagnostic assessments. In the US, a diagnosis is necessary because they have an insurance-based health system which will not pay out without a diagnosis. In the UK, our publicly funded system could do things differently. I worked in psychological therapies services for years in the NHS and rarely did a diagnostic assessment. People usually did not have a diagnosis beforehand either. Interventions were offered based on need, not diagnosis. I’m not saying that we should remove help away from anyone. I’m asking whether diagnosing so many people is delivering the improvements that they hope for and whether we might be able to do better for everyone by focusing on need.

Hills I will die on: Lived experience is important, but there are things it cannot tell us. It cannot tell us whether a behaviour has a neurobiological cause. It cannot tell us whether a person’s individual experience generalises to everyone else. It provides hypotheses, not conclusions. And when we are using lived experience to make decisions, we have to ask - whose voices are missing here? Is there a chance that I am hearing only the loudest voices? Is it possible that some people don’t feel able to speak up, for fear of the response that they will get? We have to ask ourselves whether there might be people who don’t have a seat at the lived experience table. Otherwise we risk perpetuating inequality in the name of progress.