In 2003, enrolled on a Masters programme in developmental psychopathology (the study of atypical development – i.e. conditions such as autism, ADHD, dyslexia and others) I was introduced to Waddington’s epigenetic landscape – shown in this image. For him, the image was about the action of genes on development, but for me and many others the image can instead be used to provide a model for the operation of cognitive and social processes in infancy and childhood. From this perspective, the image illustrates child development as a journey down a gently sloping valley. As you can see, at the start the valley is wide and shallow – children (represented by the ball) are all on the same, broad path. But as they grow older, their exact location on that initial path causes them to follow different channels, to different outcomes. We can imaging one of these channels as representing typical development, and another as representing autistic development. The channels get narrower and deeper. This means that if you want to switch channels you have to change direction to get there, and climb over a big hump, requiring a large outside force (i.e. specialist intervention or education).
So, hoping that I haven’t stretched this metaphor too thin (be warned – it will get worse as the post goes on!), this image of child development suggests that children follow different paths which are set from a young age. Differences in infancy might be subtle and small but even these tiny changes in the starting conditions can dramatically alter the path followed, and as the child gets older (like a ball rolling further down a valley) the changes become more noticeable, and more entrenched. To me, this is not a bad way to envision the development of a child and it certainly helps to understand why, for example, so few cognitive differences (like autism or ADHD) are detectable in infants or toddlers. It also provides a model for why such a great effort needs to be made to address difficulties which are spotted when the child is older.
Crucially, what this landscape doesn’t suggest is that one path is better than the others. Now I’m going to REALLY stretch the metaphor, so please bear with me. Imagine now that these paths lead to different locations. I live in Edinburgh, the biggest city in this corner of Scotland, and therefore where the largest number of people live. One path might lead to Edinburgh, and because most people follow that path we could call that ‘typical development’. Other paths are less heavily trodden – but they still lead to lovely places. Maybe they end up in the beautiful seaside town of North Berwick, or in the dramatic shadow of the Forth Rail Bridge. A particularly rarely-followed path might lead to the isolated but stunning surroundings of the Pentland Hills.
The point is, all of these places are great places to be. Just because MOST people live in Edinburgh – just because MOST people are neurotypical – that doesn’t mean Edinburgh is better than North Berwick, or South Queensferry, or a cottage in the Pentlands. If someone is merrily on the path to one of these locations, who are we to drag them back onto the main road? Instead, let’s make sure they get to where they’re going on a smooth road, and find a nice place to live when they arrive. And if they need to commute into Edinburgh once in a while (metaphor VERY thin indeed now…) let’s help make that experience as straightforward as we can.
What AM I going on about, I expect you are thinking. All this is inspired by my recent attendance of the absolutely brilliant International Meeting For Autism Research. I love this annual conference, for academics in the field of autism research, and, as ever, felt rejuvenated professionally by the experience of hearing about so much excellent work. However, one thing that troubled me was the focus on early intervention research and in particular the notion that if we intervened early enough we could ‘correct’ the ‘abnormal’ developmental trajectory of children before they receive an autism diagnosis. I myself have been involved in studies looking at the earliest signs of cognitive difficulty in infants, and developing intervention programs for pre-schoolers. So I’m certainly not going to deny the importance of this research. But I do feel that there is a subtle but crucial difference between those programs which aim to get children with autism onto the ‘right’ path, versus those which aim to help children with autism make the best possible progress on their own path.
Returning to my metaphor, do we really want a world in which everyone travels down the same, middle valley? Do we want everyone to end up living in the same city? No. Do we want a world with no autistic people? No. But do we want a world, not only where everyone is valued, but also everyone has a chance to succeed and be happy, on their own terms? Yes.
I believe early intervention research does have a role to play in this. For example, helping children learn to communicate is probably pretty important and useful for them, and those around them. Speech is a handy tool, whoever you are, wherever you live. But even for this example there are unresolved questions. One complicating factor is whether the methods we adopt to promote this learning (since speech doesn’t come naturally to many autistic children) are also eliminating positive and adaptive aspects of autism, as a side effect. Another is that while we might want to help children learn to speak, we also don’t want to reduce the worth of those who don’t speak, or reinforce assumptions that minimally-verbal individuals are stupid or incapable.
I’m certainly not the first person to say this, but it bears saying again. If we want to provide learning and developmental support to children with autism, especially if we want to do so very early in life, we need to agree on where we are going, as well as how to get there. Pushing every child on to the same, neurotypical pathway, ending up in the same neurotypical city, is boring at best, abusive at worst. Early intervention research needs to have a firm foundation in engagement with the autism community, and an appreciation of the skills and learning of the autistic child. If early autism researchers can keep this in mind, we might be able to create something truly valuable – a way to help autistic children become optimally autistic.