The Double-Edged Nature of a Diagnosis. By Dr Keith White.

Recently two families with whom we have been actively engaged for many years contacted me to tell me how happy and relieved they were that one of their respective children had received the diagnosis “autistic”.  Although that was exactly how they put it, I made a mental note that most probably they had been informed that the two children were deemed to be showing signs that they were on the autistic spectrum.  Be that as it may, I began to ponder seriously the nature and likely long-term effects of such a diagnosis, and why it was so attractive to the families.  (After all, it is not as if they had been informed that their children were MENSA candidates, or had been selected for trials with leading football teams.)

This reflection brought to mind one other medical diagnosis, and a more general category.  The specific diagnosis in question relates to a middle-aged woman who is the mother of two grown up children.  She was diagnosed and has since received treatment for an Obsessive Compulsive Disorder.  Over several years now she has been undergoing sessions with a psychologist aimed at helping her to deal with aspects of this condition.  She had made some modest gains, but is still in a vulnerable and difficult place.

She also fits the more general category known as “victim”.  Of course this is not necessarily the result of a medical diagnosis and can encompass a range of experiences and conditions.  In her case she had been chronically abused sexually within her extended family, and her compulsive and obsessive behaviour (which involves excessive washing and cleaning) is clearly related to her traumatic childhood experiences.

Now it can seem like the milk of human kindness to empathise with someone as a victim.  There is a willingness to listen to the story and to connect emotionally with what the person has experienced and is going through as a consequence.

What I want to do in this article is to explore not labelling in general (it is a well-documented sociological construct or process), but to consider the unintended side effects of such diagnoses.  Let us assume that the diagnoses are correct and have been given for the best of professional and personal motives.  (In so doing we leave aside the diagnosis of political critics of the Soviet Communist regime as psychiatrically disturbed or ill, and those many other sad and cynical examples of false diagnosis in the interests of social and political control.)  And I will accept that one of the reasons that individuals and families are pleased when there is a diagnosis is that this opens the door to additional resources and help.

So given all this, what possible concern could there be with such diagnosis?  To deal with the more general point first: the recognition that someone is a victim has many potential benefits, especially when their abusive, guilt and shame-provoking childhood experiences have been secret and hidden.  To have others accepting and acknowledging that abuse happened can be remarkably reassuring and liberating.  But it has become increasingly apparent to me over the years that for a person to develop and flourish in their lives, there has to come a point where they cannot remain wholly or solely defined as a victim.  It is true that they have been victims.  But the growth of their personhood, identity, self-esteem in relationship requires that there comes a time when the label or diagnosis needs to be modified or cast aside.

Time and again this is what I have heard when listening to the stories of those who were childhood victims, but who have now moved on.  These reveal that there can come a willingness to listen to and share the stories of others, and to realise that however harrowing ones owns experiences, there are usually those who are worse off.  Often there is the counter-intuitive discovery that their abusers have themselves been victims of abuse.  In this process it is not that the abuse is ever denied or played down, but rather more that the label “victim” does not become the defining category within which a person sees herself, and wishes to be seen by others throughout life.

This is a very challenging and difficult process to navigate, and never to be under-estimated.  It involves a letting go of the hold of the past, sometimes a forgiving of others even those bound up in the abuse, and an embrace of one’s own unique personality, gifts and blessings.  Please understand that I do not and will not underestimate the sheer pain and uphill struggle that is involved in such a rugged personal journey.  But this is not so much my assessment of things as the culmination of decades of listening to people who have made just such a move out of victimhood.  (And I recognise that it is not possible for everyone to do this.  Sometimes the damage is too intense and destructive of the self of a person.)

What I am seeking to describe is the way in which a simple and pervasive label of “victim” can stay with a person throughout their lives and become the defining category of their identity, and also the way that they choose to be seen and related to by others.

This leads me to the diagnoses of OCD and autism.  I have no doubt that the former is correct in so far as it goes.  I have more problems with the category “autism” (even when set within a spectrum).  But there is also a problem with the diagnosis OCD.  In the case of this particular person she had been holding down a regular job before the diagnosis, and I have witnessed the way in which this was lost as the category became virtually all-defining.  She attends courses from time to time, and goes to a day centre intended for those with mental health problems.  She is obsessed with trying to deal with her obsession. And her housing and benefits depend on the continuing relevance and accuracy of the diagnosis.

The problem is, of course, that the very nature of the diagnosis and the extensive help offered, mean that she has become dependent on the services, advice and treatment that go with the category.  And it does seem like a straitjacket from which it is hard to see her escaping or emerging.  Her whole way of life (that is her own patterns of behaviour, and the demands of the treatment regimes) is defined by her diagnosis.  Everything is filtered through this lens. Although she has many personal gifts and abilities, they are often submerged as this diagnosis has become seemingly all powerful.

With this in mind we turn finally to the two children who have been diagnosed “autistic”.  They too will likewise receive additional support and services.  This marks considerable progress from the time when such a type of condition went largely unrecognised.  But not only would I like a recognition that the whole human race sits somewhere on this spectrum, males in particular, but that there are some inherent disadvantages and problems with it.  Knowing the families in both cases, and having been close to them over many years, I know that the parents have themselves experienced chronic abuse, and that their lives, including their ability to parent, have been adversely affected by their traumatic childhoods.

The diagnosis of “autism” could well mean that attention shifts to the child rather than to the family as a system.  It is a label that could affect an understanding of the dynamics within the family, and there is a risk of scape-goating.  It is likely that this will be so for the childhood in not the lifetime of the child.  And it is not clear if there is any way of modifying the diagnosis.  Even if professionals do, the families are unlikely to do so.

In the light of this, my sense is that those engaged with the children and families should handle all such categories and diagnoses with care, and as provisional.  The defining category should always be that all involved are related to as unique human beings and by name. Their lives and stories should be respected as full of potential.  True professionalism, as well as humanity, will always be characterised by an appropriate degree of humility.