Sorry

"Sorry

Is all that you can't say?

Years gone by and still

Words don't come easily (...)"

Tracy Chapman, Baby can I hold you?

Sorry, but this text will be written in English even though the vast majority of readers are Portuguese. But it's an important enough issue that even though it's taking place in a country other than our own, it's important for everyone.

Today we know that one in 34 children will be diagnosed with Autism Spectrum Disorder. These figures represent the reality in the USA. In Europe, it is estimated that there are around five million autistic people, with one in every 100 people having the condition. In recent years there has been talk of an increase in the number of cases and diagnoses. To the point where the current US health secretary is talking about re-investigating the relationship between vaccines and autism. But it's possible to understand things in another way. Bearing in mind that the diagnosis of autism only appeared in diagnostic manuals in 1980 and that of Asperger's syndrome in 1994. It's understandable that many adults over the age of 30 have only just begun to understand some of its characteristics. In several European countries in recent years, the public health system has developed a set of guidelines to meet the needs of autistic people and, more specifically, those adults who have sought diagnosis and, consequently, counselling.

One such example is the United Kingdom, which has developed a whole set of health policies for autism throughout life. In particular, the creation of a task force to train as many health professionals as possible, from psychiatrists to general practitioners, so that they could respond to the growing number of requests across the UK. Since then, it has been possible to monitor the number of requests registered and, consequently, the waiting list of people to be assessed. The number of requests increased dramatically, even though the health services continued their process of training health professionals and creating appropriate health structures for this population, taking into account the autism act developed by the UK government.

A 2023 study estimated that between 150,000 and 500,000 individuals aged 20 to 49 in England may be autistic but undiagnosed. As of June 2024, a total of 193,203 patients in England had an open referral for suspected autism, meaning they were awaiting assessment or diagnosis through the NHS. As of September 2024, over 204,000 people in England awaited an autism assessment, with 89% waiting over 13 weeks, a 25% rise in a year and 96% in two years.

Other reports from the UK have warned of the discontinuation of some assessment and follow-up services for adult autistic people. Not only have those people who have been registered, some for more than two or three years, learnt that their waiting time means they won't get any response. But all those who are still at the beginning of the process of looking for and requesting an assessment are also dismayed and distressed.

Still, NHS Tayside said: "While a formal assessment and diagnosis can provide a clearer understanding of certain patterns of behaviour, it is important to know that it is not necessary in order to access many forms of support, including additional support within school.

Such a statement disregards the autistic person, their needs and their unique functioning profile. Formal assessment is not just about finding out and telling the person if they have a diagnosis of Autism Spectrum Disorder. Making an assessment is a step towards a greater and better understanding of the person. And to be able to tell the person why they were only diagnosed as an adult. As well as being able to tell the person what their characteristics are in terms of an autism diagnosis. And how to deal with these characteristics on a daily basis. It's also important to realise that autism is a lifelong condition. And as such, situations will continue to arise that will challenge the autistic person and that it is important to be able to have a much more and better coordinated health response.

In Portugal, we don't have an exact idea of the number of autistic people, especially adults. We also don't know how many adults have requested an assessment for Autism Spectrum Disorder. And as such we have no idea what the reality is. Some might say that there are no waiting lists for this type of assessment. This doesn't surprise me, given the lack of strategy in healthcare. But such a response is not only fallacious, but also irresponsible and dishonest. It is essential, whether in the UK, Portugal, Europe or elsewhere, that we can be clear about what we want as a lifelong strategy for autism.