“Allen Frances” is a name that doesn’t come with positive connotations, in the autism world, principally because of his out-spoken views on the over-diagnosis of autism. Those who think autism is caused by environmental assault or vaccines, think he is trying to downplay the real autism increase and its causes. And those who think autism is actually under-diagnosed and recognise how essential it is to have the diagnosis to get much-needed services, see his “over-diagnosis” claims as inaccurate and as a threat to them getting (or maintaining) those services.
Frances is not just a loud nut-job pointlessly irritating the masses though (god knows there’s enough of those about). He was part of the DSM-IV team that introduced “Aspergers” to the manual. They expected an increase in autism spectrum numbers after the introduction of Aspergers, but nothing like the soaring numbers that actually occurred. Frances has opinions about why the numbers soared in response to the introduction of Aspergers, and has general concerns about the impact of this increase (which I will expand on in this post).
Yesterday I noticed the “Coffee Klatch” was doing an interview with Frances, about the DSM-5. I didn’t have the chance until today to listen to it (it’s over an hour-long, I rarely have that package of time free in a day), but got the chance today. And I’m very glad I made the time. I know many other autism parents also won’t have the chance – or won’t want – to listen because of its length (or because of the man himself), but I think he makes some very important points that mustn’t be drowned out and ignored by upset about his claims of over-diagnosis. Some of his most poignant points directly match the concerns I shared in my post yesterday, on the importance and impact of tying services and funding too strictly to a confirmed diagnosis; so from my perspective it’s well timed too.
In this post I’m going to summarise the key issues he addressed in that interview (and it definitely won’t take an hour of your time to read my summary). Certain themes repeated through-out the interview, so I’m going to do my best to package his points together. I’m going to focus on what he had to say about autism (though he also spoke about ADHD, Childhood Bipolar Disorder, and TDD / DMD). I encourage you to listen to the whole interview if you get the chance. It was highly educational. Here we go:
Frances expressed concerns about the DSM-5 process; pointing out that many think it is too secretive, too closed, and lacking in much-needed independent reviews. He thinks the wording chosen in the DSM can be incredibly powerful, and that not enough care is going into the subtle choices of wording, and not enough consideration into the likelihood of misuse and misinterpretation of the wording.
Frances is worried too that the DSM is being used to “put forward hypotheses” rather than focused on only including conditions that have been tested and studied extensively prior to inclusion. The particular fear with this approach is the unintended consequences that flow from the diagnostic categories; that the DSM is actually a very powerful and influential tool that can and does change lives, so those constructing it should err on the side of conservative caution.
Frances is concerned about how tightly funding and services is tied to diagnoses; he would like to see services and funding responding to an individual’s needs rather than to a diagnosis category. He recognises that this would require a real restructuring of the current (American) system, but that it would be for the best, though he has no easy answers about how it could be achieved.
Because funding, services, (and drug company profits) are bound to diagnoses, there are a lot of distorting influences at play, when it comes to what motivates people to give out diagnoses and what is done once a diagnosis is confirmed. Frances is concerned that the DSM is used too much like “a bible” when it comes to making these important life decisions, when really it is an imprecise instrument that has rather lost its way.
It’s lost its way because it expanded certain diagnoses (such as autism and ADHD) to such an extent, that the people who qualify for a diagnosis sit closer and closer to the line of “normal,” rather than the diagnoses focusing on picking up the most severely affected individuals. He worries that this pathologizes difference, when difference is actually part of life and even desirable. He is concerned too that under the current (again, American) system, resources are a “zero-sum” game: When those who are less affected by conditions also qualify for support, there is less support and resources available for the most severe cases who correspondingly require the most help.
Frances believes that those who are instead mild, moderate, borderline, or atypical, are in fact better off without a diagnosis and without corresponding drug treatments. That the younger a child is, and the less classical their presentation of a condition, the less likely they will benefit from the diagnosis and drugs. He notes that it is not at all universal that having a diagnosis is seen as a good thing – whether by parents or by individuals who get the diagnosis: That the label is helpful to some, and actually harmful to others.
All this doesn’t mean he wants those with the milder version of conditions to be “bumped off” services. He’d rather see the focus be on precise diagnoses, and that diagnoses are not so be-all-end-all of who will receive services. That “helping someone” is not equated with “diagnosing and medicating” them.
Those are the main points I took from the interview. I strongly agree with some of his points and concerns. I think at the very least, that it is important to be aware of the arguments he is making about the flaws with the DSM, and about the unintended consequences that come from treating the DSM like a bible (he has a lot to say in the interview about the use of drugs to address DSM conditions, that is worth listening to if that is a particular area of concern for you). I’d be interested to hear your thoughts on his views as expressed in this interview.
I couldn’t figure out how to embed the episode on this post, so here’s the link to the piece at its original home.