The question of diagnosis, is a separate question from the existence of the thing that is being diagnosed. To put it another way: Whether someone has received a diagnosis or not, will not definitely tell you if that person has the condition. People without the condition may receive the diagnosis, and people without the diagnosis may have the condition. This is especially true of a condition like autism, which is currently still defined by its symptoms (though more is discovered every year about what causes those symptoms and how those causes may differ or be the same).
All this may seem trite, or obvious to the point of redundancy. However, the process and consequences of a confirmed diagnosis is neither. In this post I’m going to introduce some of the factors that interplay with the role and importance of diagnosis, and why that leads to my disagreement with the popular view that Diagnosis Manuals should take such factors into account.
The first is insurance. In some countries, key treatments for autism are not covered by the Government, but by private insurers, and in many situations those insurers require a diagnosis before covering treatment. Requiring a diagnosis very early on in the process, puts understandable pressure of medical professionals to make a quick and early diagnosis. A quick and early diagnosis is not good practice, particularly for a condition like autism which requires a thorough consideration on other possible conditions and contributing factors before reaching an accurate (and therefore helpful instead of harmful) diagnosis.
Next we have education. Again, in some countries, getting adequate services at educational facilities requires a confirmed diagnosis. In other countries, services are provided based on actual needs of the child, independently of a confirmed diagnosis. Obviously, there will again be pressure placed on medical professionals – both by families and by themselves wanting to do the best by their patient – to reach a diagnosis that itself will help the child access services, even if the diagnosis is not as careful or accurate as they would otherwise require in their professional practice.
I’m not a fan of placing blame on “Big Pharma,” but it is important to note the potential and actual impact of the ability for pharmaceutical companies to influence medical practitioners and consumers directly. In the USA and New Zealand, it is legal for these companies to advertise directly to the consumer; this is not the norm internationally. There is concern that new drugs developed for conditions, encourages pharmaceutical companies to raise attention, concern, and ultimately diagnoses of those conditions, partly through creating paranoia and fear about what could happen to the otherwise undiagnosed individual.
All these factors, any one of which could pressure or persuade towards a diagnosis rather than towards caution and longer investigations into an individual, are further complicated by societal and cultural attitudes towards both diagnosis itself, and more generally towards autism. In some societies and cultures, diagnosis and autism carry very positive effects of finding answers, finding like-minded individuals going through the same challenges, and the freedom from guilt that the parents are somehow solely responsible for a child’s difficulties, allowing them to take positive and meaningful steps towards helping the child and the entire family.
In other societies and cultures, a diagnosis and autism are considered evidence of parental failure and of the child’s inferiority. The impact can be so extreme that the family may keep the child hidden and try to battle very difficult behaviours without adequate or any training and support.
All these factors are at play even before you take into account the difficulties a Diagnostic Manual faces purely in scientific terms of trying to identify the core and differentiating features of a symptom-defined condition like autism. The people who construct these Manuals must decide whether their criteria should only reflect known information on the condition, or should act as a forward-looking guide to how they think research should progress. They have to draw a line between what is and what is not relevant, to what severity, and in what combination. They have to figure out how to express the criteria in words that capture exactly what they mean, and nothing unintended.
As if all that wasn’t hard enough, they are also expected to take into account how their chosen words and criteria will impact on the people who receive the diagnosis. They are aware that insurers, educators, Governments, and pharmaceutical companies, as well as charities and various awareness and identity movements, are all interested and invested in the diagnoses they construct. In the vast majority of opinion pieces that I read leading up the DSM-5 changes, I encountered the public pleading and demanding that the people writing the Manual be mindful of such organisations and interest groups.
But I have come to wish quite the opposite, which may seem harsh or naive. The reason I wish the writers of these Manuals would ignore all factors other than pure scientific ones, is because they cannot control how all these other various organisations will react and change over time, and there is no consistent way to write a Manual that could capture and respond to so many and often contradictory concerns. Some of the interest groups put pressure in the direction of broader and looser diagnoses, other groups advocate for much tighter or even removal of entire diagnostic categories. Even if the makers of these Manuals could make key interest groups happier, they still cannot control for how individual doctors, families, and patients will view and react to diagnoses.
Surely the writers of Diagnostic Manuals should play their role – one of scientific accuracy – and leave these various and hugely differing interest groups to fulfil their own roles. If insurers and educators and Governments have policies that require a fast and early diagnosis before helping families and individuals, does it not benefit more people if they are pressured and required to change how they operate, instead of insisting that writers of a Diagnostic Manual change to reflect those injustices as if they are universal and stuck-in-stone? If a Manual is written by the members of a particular country, but is used world-wide, perhaps the Manual should explicitly state it only applies in the USA (for example) instead of actively trying to incorporate purely national concerns in a way that changes the criteria.
I would prefer that each organisation and interest group did the best within its realm of responsibility, instead of trying to guess and dictate how each other organisation will respond. This may not always be possible, or wise, but it seems to me that the current system is very far from perfect, and what I see and hear going on right now is doctors and Manual writers tweaking and choosing diagnoses in response to external organisations. This just creates a spiral effect of those organisations then changing their practices to (for example) further limit the number of people with that diagnosis who would have qualified for services anyway. It’s a lose-lose that doesn’t openly confront existing injustices and endemic problems that should themselves be forced to change.
The diagnosis question is the diagnosis question; how Governments and other organisations dole out services and funding is is an important, but ideally separate, question.
Diagnosing the problems with diagnosis, is a difficult but important problem, that itself reflects many of the issues and diverse attitudes towards autism and autism services in societies across the world.
Links to useful background used towards this post:
- Interview with Dr Allen Frances, on “Saving Normal.” Coffee Klatch, May 2013.
- “Understanding Special Education from the Perspective of Pasifika Families.” Report to the Ministry of Education, 2013.
- “Making a Strawman of the DSM.” Psychodiagnosticator, July 2013.
- “”I’ll call a kid a zebra…” Recognising Fashionable Autism.” An earlier post of mine citing other sources. July 2011.