[Posted on 31 October, 2017 by Lucy Thompson]
Something I learned fairly early in my experience as a parent was that nothing about your child’s behaviour is linear – just as you think you’ve figured out your baby’s sleep pattern, they go and change to something completely different. And you panic. When you go through a tough phase (cluster feeding, hourly waking) you think – is this it? Is this how it’s always going to be? Then, of course, things change again – some things improve, and inevitably some things change for the worse. And so the cycle repeats and repeats.
Knowing this, and knowing that both good and bad phases will not last forever, helps you to slow down, stop feeling so anxious, and just focus on the child you have in front of you, today. You can’t second-guess what your child will feel, think, or need tomorrow, or how that day’s challenges will impact you both and how you relate to each other. So there’s no point in worrying, you just have to go with the flow and deal with what’s in front of you, and in so doing you are able to give your best energy to responding to your child’s needs.
It seems to me (admittedly a non-clinician) that children’s mental health services haven’t figured this fundamental reality out. They do not seem to be designed to expend their best energy being responsive to the individual child in front of them. Moreover, they seem designed to keep things in orderly categories, around which resource allocation can be neatly justified, professional groupings (and dare I say professional preferences) protected and care pathways kept reasonably simple. Such an orderly approach has of course been partly informed by the standard diagnostic categories used in child mental health. But have those responsible for service design inadvertently over-extended the utility of these diagnostic categories when it comes to children’s neurodevelopmental problems?
What good is clinical diagnosis, for any ailment? What does it tell us? Of course, it is a very useful tool that helps us narrow down the range of possible causes for troubling symptoms, and ultimately guides us to the best type of treatment. You rely on your doctor to give you a diagnosis of ‘chest infection’ so that you may be prescribed the appropriate treatment (antibiotics) when experiencing symptoms of breathlessness, coughing, and high temperature. So what about a child experiencing symptoms of, for example, disruptive behaviour, poor language development, panic attacks, and an over-sensitivity to noisy environments? Can the point of clinical diagnosis be characterised in quite the same way?
Parents of children for whom there is a suspected neurodevelopmental problem are usually keen to seek diagnosis as soon as possible, partly so their minds can be put at rest regarding what is going on for their child. Acquiring a label that confirms that functioning with these symptoms is difficult, and that support is going to be required, can be hugely validating and reassuring both for parents and children. Seeking diagnosis is also, often primarily, to gain access to the right support services, be they educational, medical, or practical. Parents are often told that until their child has a ‘label’ such as ADHD or ASD, they will not be considered as eligible to receive, for example, extra help in school. In fact, there are certain diagnoses (i.e., ASD) that seem to represent the ‘holy grail’ of diagnoses, as they open the door to a level of services not provided to other (less high profile, perhaps less popular) areas of neurodevelopmental problems.
The difficulty with this is that any one label is only ever part of the picture for any given individual. As Gillberg & Fernell (2014) point out, it is rare for a child to be diagnosed with ‘just’ autism – it is almost always ‘autism plus’ – plus language delay, plus epilepsy, plus ADHD, plus intellectual disability, etc, etc. And the ESSENCE concept (Gillberg, 2010) highlights the considerable overlap between diagnostic groups that is observed in very young children – seeking a single label at this stage would be particularly problematic. A full and comprehensive assessment is the first stage in articulating such a child’s needs, and it is important that the diagnostic summary highlights the full range of areas of difficulty. Focusing on a ‘primary’ problem for the sake of convenient service management does a disservice to the child’s needs and assumes these can be neatly packaged into a single clinical identity.
When my son was around a year old we faced the prospect that he may have a genetic syndrome linked to a range of potential limitations, the extent of which would not be obvious until he was older. We would have to wait several months for genetic analysis to confirm or refute this prospect, but our immediate reaction was quite striking. We, of course, worried about his future and what a diagnosis might mean for him, but it also caused us to question how we viewed him at first: as if we expected that he would somehow become a different child to the one that we thought we had. It didn’t take long for us to realise that we still had the same boy in front of us, and no matter what any tests revealed, we would still need to do what we had always done – focus on the child in front of us, today. The diagnosis would not define our child, our experiences of and with him would.
So how do we get services to think in this way – rather than starting with a diagnosis and trying to make children fit the boxes, to start with looking at the child, completely, and shape a package of services around them? Just because a child does not meet all the criteria for ASD, why should that mean that they are not entitled to any extra support? What happens to the child who is held back from obtaining the necessary comprehensive assessment because a ‘wait and see’ or ‘we’ll just try a light touch first’ approach is preferred? And why should any diagnosis be considered as more ‘worthy’ of intervention by a certain service or group of professionals than others (e.g., ‘no, we don’t see ADHD children here’)? Of course there are realistic pragmatic tensions to consider – there is a need to manage the allocation of scarce resources, and addressing complex and multi-faceted problems is by no means straightforward. I don’t claim to have all the answers, but surely we have to first own up to having it all upside down. Diagnosis is important, but that should not be our starting point in structuring services. Just as a new parent quickly learns, we need to redirect our attention to focus on the child(ren) we have in front of us, today.