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This week, there has been a lot of discussion online about a recent study which recently published its results, and which got quite a lot of exposure in mainstream media. The published research article can currently be found here: Effect of Preemptive Intervention on Developmental Outcomes Among Infants Showing Early Signs of Autism. The newspaper articles had headlines that could be described as more ‘catchy’, presumably designed to invoke an emotional response in people so that they’d click through to read the newspaper article. Many of the headlines said something about ‘preventing autism’, which might not sound like a strange idea to people whose lives do not feature anyone who’s diagnosed autistic, but once you have an autistic person in your life, or if you are autistic yourself, you can probably think of some issues with that concept.

Is ‘preventing autism’ a problem?

Well, that question could be enough for a whole long blog post in itself, but I’ll try to keep myself super brief here, and I’ll touch on it again further down in this post. Basically, if a person is autistic, it is very much part of who they are, it shapes their perceptions of the world around them and the ways they interact, think, learn etc. For an autistic person to have a positive self image, and to love themselves, they need to feel accepting and positive about who they are, and that generally includes then feeling accepting and positive about being autistic, as that is so integral to who they are. And for people around other autistic people, for example parents (like myself) whose child is autistic, we also need to be accepting and positive about who they are. And if we see autism as something that should be prevented, that implies that we want to prevent autistic people, and/or prevent them from being who they are. At least it can be (and often is) interpreted that way, and that makes talking about ‘preventing autism’ a negative thing.

Is ‘preventing autism’ even possible?

I’m a little reluctant to even put this question here, as it is such a complex one. Plus as I just said, it’s a question that can raise a lot of conflicted feelings and negativity. Again, I’ll keep it short here: Autism is a neurodevelopmental disability (or ‘disorder’ according to current medical/scientific terminology). It can have a combination of causes, which are not yet fully understood, but generally it is most often believed to be rooted in genetic factors, which causes the brain/nervous system to develop somewhat differently to ‘the norm’, and which results in a nervous system that processes things differently to the majority. For better and for worse, as it can come with both great strengths and severe difficulties. For autism to be diagnosed however, it has to cause ‘persistant deficits’.

Because of autism being mainly caused by genetics (as far as we currently know), the ‘blueprint’ for how the autistic person’s nervous system will develop is alredy there from birth. Hence you could argue that a person is ‘born autistic’, and there is then nothing we could do to ‘prevent autism’ (leaving the question aside of whether we would want to do so). However, the brain is far from fully developed when a child is born, and genetic pre-dispositions do not always carry a definitive outcome. And there is no way of diagnosing a new born baby with autism. So in that sense, babies aren’t born autistic. And because the brain isn’t yet fully formed, by far, and has a very high level of plasticity, which means it is shaped by environmental factors, it isn’t actually crazy to argue that autism could be ‘prevented’.

One could however argue then, that it’s not autism that is being ‘prevented’, but rather that the child is prevented from meeting the diagnostic criteria. This is also linked to a difference in perspectives, of seeing autism as a diagnosis, or as ‘a way of being’ which is there regardless of it being diagnosed or not. Personally, I would say that if you do not meet the diagnostic criteria, you are not autistic. You may still be neurodevelopmentally different, in ways similar to what could bring a diagnosis of autism. But being autistic is literally just another wording of being diagnosed with autism. I’ll add caveat though, as I think the diagnostic criteria should probably have a clearer emphasis on things like sensory processing (which is an aspect considered but not defined as one of the main core issues for diagnosis), and possibly more about executive functioning issues too. I also think there seems to be a gap between what it actually says in the diagnostic critera and how that is interpreted or applied by some professionals.

Some thoughts based on our own experience:

When our son was newly diagnosed, with ‘infantile autism’ according to the doctor’s notes (in today’s terminology it would have been ‘autism level 3’, I believe), we were told by well-meaning professionals that there was nothing we had done to cause his autism, and nothing we could have done to ‘prevent it’.

They meant this to be reassuring, and I guess it was. But at the same time as they were saying this, they were also asking us to choose what therapies our son should be starting. And it made me wonder… If there was truly nothing we could have done better before he was diagnosed, how come now he’d been diagnosed, there was suddenly an array of things that we could/should be doing (and they kept saying it was important to get started as soon as possible too)?

And if it truly hadn’t made any difference what we had done or not, prior to diagnosis, how could anything make any difference now, going forward??

Looking back, I can see how there were some misunderstandings at play. They were telling us that whatever we’d done, our son would still be autistic. The therapies they were suggesting weren’t aimed at making him not autistic, nor would they have ‘prevented’ his autism if started earlier. The aim was to help him develop skills, strengths & strategies to cope as well as possible in life, as an autistic person.

I think those misunderstandings are very similar to the newspaper reports about this new study, which has caused so much outrage this past week. The headlines saying things such as “Autism can be prevented by teaching parents how to interact with their babies, study finds”, makes it sound as if what the parents are doing, or not doing, is deciding whether their child will be autistic or not, doesn’t it?

I think those headlines were poorly chosen and unfair to both parents and the researchers, and I’m not surprised that many autistic people found them offensive. But was the therapeutic intervention that the children and their families recevied a bad thing in itself? And are therapies aimed at autistic children always wrong? (I don’t think I’m revealing too much if I say that my answer to that question would be “no”.)

Further thoughts on the recent research, and on how therapies may both help and hinder:

Most of the reactions I’ve seen, to those newspaper articles mentioned above and the study they were reporting the results of, have been very negative and not particularly reflective. I was however quite happy to find this text by James Cusack, CEO of Autistica and himself diagnosed autistic, published in The Guardian a few days ago: https://www.theguardian.com/commentisfree/2021/sep/22/therapy-children-autism-social-development-diagnosis Again, the headline isn’t a great reflection of the actual contents of the article, but that aside, I think Cusack shines a light on some important points, and I admire him for not taking a one-sided perspective or jumping to definitive conclusions.

I’ll quote parts of the article here, to share some of the main points that Cusack is making, but I’d really recommend you to read the whole text yourself as well (it’s not terribly long). This part of the article really resonated with me:

From speaking to autistic people and families, we know that developing communication and language skills alongside finding ways to ensure families feel able to support autistic people are top priorities for autism research. Social communication skills make a huge difference in all our lives. They improve our chances of being able to explain our needs, build stronger relationships and find employment: all things that autistic people can find challenging.

What’s exciting about the findings of this study is that the therapy does successfully boost the social development of the children who receive it. That confirms what autistic people have been telling us for a very long time, namely that the best possible way to help autistic people build skills is to create the best possible environment for them and to follow their interests – rather than leaving autistic people feeling they have to hide or “mask” their autistic traits to fit in with a neurotypical world.

What makes this complicated, however, is that social communication skills are one of the main things measured when someone is assessed for an autism diagnosis. The fact that this therapy boosted those skills meant that children scored lower on those parts of autism assessments, which in turn meant they didn’t meet the criteria for an autism diagnosis.

Cusack goes on to say:

That raises questions that should give us pause. The main concern for us in the UK is that support only follows diagnosis. Even if the therapy allows autistic people to have a better start in life, the system will need to change to ensure support is there if and when it is needed.

Later, he continues:

Medical research studies such as this, for all their methodological rigour, do rub uncomfortably against the experience of being autistic. Autism is not a “preventable” condition that we can treat like other areas of medical research. As with many studies, the research paper itself can, and frequently does, use terminology that can appear insensitive and be open to misunderstanding or misinterpretation.

Combined with the need to for simplicity, this can lead to headlines that spread unnecessary fear and anxiety about the goals and impact of this work. It’s easy to see how, without nuanced discussion and in the absence of reasoned debate, the positive elements of the study could be overshadowed by the more problematic parts. It’s important we see both the good and the bad […]

Cusack concludes by saying:

[…] It’s clear that we need research that directly improves lives.

That means, despite its complexity, we can’t shy away from the kind of research that throws up challenging conclusions. It is only by questioning the status quo that we can find what works and what doesn’t, what’s appropriate and what’s not, what’s right and what needs more study. Talking about that research with humility, empathy and sensitivity will help us to ensure that the many autistic people in the UK and elsewhere inhabit a world that works as well for them as it does for neurotypical people.

What do you think about the thoughts and arguments that James Cusack is making in his article? I feel he’s making a lot of sense, seeing things from more than one absolute perspective.

Some final thoughts…

I could go on, but I fear not many would find the time to stick with me for much longer. So I’ll round this off here, with a few final thoughts that are currently circulating in my mind. I guess you could call them loose ends…

The recent study which has sparked this post, was on a small cohort of children (at the end of the study, they had 89 children still participating), so more and larger studies would be needed to confirm the results, and follow-up of these children as they grow older would also be a very good thing, to see how this therapeutic intervention might affect them longterm.

The results showed that, by the age of 3, a smaller percentage of those children who had received therapy did fulfill the diagnostic criteria for autism, compared to the control group that had received no therapeutic intervention. So basically what it showed was that working on how parents interact, play and communicate with their babies, can make those children more able in areas of communication etc, and that makes them less likely to qualify for a diagnosis of autism.

If we’re saying that this kind of ‘autism therapy’ (which as I understand it could be described as a mix of speech therapy and play therapy, focusing on how the adult interacts with the child) is a bad thing, does that mean that we would have been happier for the children to not get this kind of help, so to increase the chanses that they’d qualify for an early autism diagnosis? And what about children who are already diagnosed, are we saying that they shouldn’t receive any therapies which might result in them not scoring as highly on a diagnostic assessment for autism?

I love strength-based approaches, where you focus on helping a child develop what they show signs of being good at (and interested in), rather than deficit-focused apporaches where the things they are not good at form the basis for what you work on with them. However, at the same time, I’m definitely not saying that I don’t want to help my child becomin able to communicate his needs, thoughts and wishes to others. He currently has little to no ability of that, so it’s definitely a weakness for him, and it most certainly is a big part of him being easily diagnosed with autism. So from a medical perspective, working on those skills could make him ‘less autistic’, or ‘less severely autistic’ (I’m aware of those terms also being problematic, but I hope you’ll understand what I’m trying to say). But I struggle to see that as a bad thing.

As I said, I could go on, my thoughts are whirling back an forth, with many different aspects and angles to consider on all these things… But I’ll finish here, for now. And I’d love to hear from you in the comments, if you have any thoughts on this, any reflections, questions, realisations or other perspectives to add.

Thanks so much for reading x

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