Recently we’ve been hearing bold statements from politicians and media about ‘finding the answer’ to questions about the autism spectrum, and even warnings about using paracetamol (better known as Tylenol in the US) during pregnancy. These types of statements cause unrest whilst the nature of autism is fairly simple: autism isn’t an illness you can just cure, but a way of being within the broad autism spectrum. People don’t need a ‘solution’, but acknowledgement, respect, understandable explanations, and suitable support. This isn’t just friendlier, it’s also scientifically more appropriate.

The paracetamol-discussion

Take for example the paracetamol-discussion. For years now, observations that show the tiniest correlation between paracetamol use during pregnancy and developmental outcomes have been cropping up. But such connections are shaky, not causal, and often disappear when you study them more closely. In the Netherlands, the advice remains: use paracetamol sensibly, only when necessary, take the lowest doses possible, and seek medical help if the symptoms remain. It’s important to understand that fever and pain themselves can be symptoms of something worse.

Short-sightedly suggesting that paracetamol causes autism doesn’t help anybody and falsely puts blame on mothers. It’s the classic trap: compress a complex reality to a quick, moralising, but untrue message.

It’s not a ‘cure for autism’

In other news: the American FDA has recently approved a drug that the media sometimes refers to as ‘a cure for autism’: leucovorin. Let’s take a step back and look at this. It seems like what it comes down to is that a rare metabolic process –  cerebral folate deficiency – causes the folate to not enter the brain successfully.

For a small group of people, in which folate-receptor antibodies play a part, some autism related signs can overlap. For that specific subgroup there have been signs that leucovorin can improve certain functions, like speech and social communication. And although that is good news for families and clinicians who specifically screen for this, it isn’t actually a ‘cure for autism’, just like glasses aren’t a cure for bad eyesight. It focuses on a small, biological component that isn’t representative of the whole autism-spectrum variation. Autism spectrum isn’t a defect, but a diversity.

Autism-spectrum

People who are on the autism-spectrum themselves, know that the real difference often lies in the environment. If you have to constantly hide yourself to comply with the standard, you end up exhausted and insecure. Recognition, predictability, clear communication, regulation of stimulants, room for personal interests, and living life at your own pace form the basis.

In that type of environment you can explore together what tools may be suitable for you – from practical adjustments in schools or places of work, to certain forms of therapy, and in exceptional cases and after thorough examination, a biological intervention like leuvocorin for proven issues with transport of folates. The order is important: the person comes first, then the mechanics.

Let’s use science for what is it meant for

From a scientific point of view, it is advisable to be modest. Because you simply can’t deduce causality from mere observational studies. You can’t just ‘solve’ this with a spreadsheet or analysis, there are methodical and ethical boundaries to be considered. Let’s use science for what it’s meant for: carefully gathering evidence, taking small steps forward, and keep returning to the question: what does this mean for somebody’s everyday life?

How can we continue being supportive? We must hold on to two things. One: autism spectrum is a valuable form of neurodiversity, not a defect. Two: within this diversity there’s a small subgroup with certain biological trades that could benefit from Leucovorin. But we must remember this is only relevant to a small group of people with demonstrable folate issues, not a universal ‘cure’of autism.

Respect, room, and realistic support

To parents, partners, colleagues, and professionals: believe in the kind, everyday approach. Keep talking to the person in question. Maybe less exciting than the ‘next big breakthrough’, but much more effective – and exactly what people on the spectrum have been asking for for years: respect, room, and support.