Allen Frances on the Problem with the Primacy of Diagnosis, and the DSM-5

“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.

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11 Responses to Allen Frances on the Problem with the Primacy of Diagnosis, and the DSM-5

  1. mrsstone says:

    Thanks for this. I do think there are some valid concerns. However as you may know Iv’e written a post deriding some of the statements Allen Francis made in news articles. His claims seem to be US focussed with an emphasis on the services/funding available in the US. But the rates of diagnosis across the globe seem to increase consistently despite each country offering varying rates of support. And I am yet to meet a child who has an ASD diagnosis who does not clearly meet diagnostic criteria here in Australia. Iv’e no doubt that some children are misdiagnosed and so developing clear diagnostic criteria for ASD is essential to avoid this, but I find it hard to accept that misdiagnosis is responsible in large part for the increasing rates.

    My son would be considered mild/moderate. My view is that his diagnosis is positive not just because it allows access to services but it also allows me to better understand him. And others also to do so once he starts school. I’m not sure what drug treatments he refers to for ASD? Surely any pharmaceutical interventions target symptoms, not autism perse’? And the decision to prescribe drugs for children would/should never be taken lightly by parents or professionals.

    • Absolutely Sharon, and he emphasizes that; that giving children drugs needs to be looked at very carefully and seriously. I get the impression they hand out drugs for autism a lot quicker in the US than in NZ (and maybe than in Aussie too), from the way he broadly expressed his concerns. He was talking about the drugs in a broad way; about them being a too-easy reaction to DSM diagnoses, and that a huge proportion of the drugs were being prescribed by local family docs instead of specialists. I can’t remember any specific drug names re ASD, but he did mention some groups of drugs from memory; I don’t know much about ASD drugs (we’ve never given any to my son) so I didn’t recognise what types he was talking about.

      As for your points on over-diagnosis, yes I think those are very important considerations too. Though I would say that his concerns about the looseness of the definition of ASD would be relevant to any country that uses the DSM (I know they do here, surely there too). I know that your point about different services and funding systems is an important one, but again I’m not sure how other countries grant access to services too; are they highly dependent on a confirmed diagnosis in Aus too for instance?

      And again, yes re your point on a positive diagnosis experience with your son. Though as Frances said, this isn’t always the case. It has been very posiitve and helpful for our family too, though I know of families who see the diagnosis as an unhelpful stigma, and others which refuse to get a confirmed diagnosis because of (perceived or actual) negative consquences attached to the label.

      I really appreciate your comment and thoughts, thanks.

      • mrsstone says:

        Allen Francis is here in Perth at the moment. I listened to him on the radio today.

        Regards the stigma of diagnosis. I wonder how that compares to the stigma of growing up with people labelling you lazy, rude, arrogant, anti social, stupid and so on because they don’t understand the very real neurological struggles you may be struggling with?

        When families choose to avoid diagnosis it’s often about their perceptions of disability. Their own prejudice. And in doing so may deprive their children of support, understanding, insight and community.

        And yes we do require formal diagnosis to access most supports in Aus. Where I am in WA a diagnosis requires an assessment by a developmental paediatrician, psychologist and speech pathologist and they must all agree on the diagnosis. Having said that supports are limited and not worth the effort to obtain the assessments and label on their own. The effort is worth obtaining for the sake of better understanding.

      • Nicely said Sharon, some excellent points there.

  2. seventhvoice says:

    I agree that the link between overtly medicalised definitions of Autism and the ability to access support services needs to be critically looked at. In Australia it is very much the case that access to any form of support requires the formal rounds of a medical confirmation of Autism, PDD NOS, etc. This causes multiple problems for those who are either incorrectly or not adequately diagnosed as being severe enough to access services. This is an on going problem and one that far too many children and young adults with autism and their families are experiencing. I have written several blogs describing the Australian Autism experience from both a researcher’s and a parent’s point of view. I’ve also written a few pieces highlighting the pending problems with the so called ‘spreading out’ of the diagnostic criteria in the DSM-V. Please feel free to have a read if you get the time.

    • Thank you seventhvoice, I will most definitely be having a look at your posts on the topic, not least of all because our family has frequently contemplated whether a move to Australia would be best for our son’s educational (and our family’s financial) future. I also have a growing interest in how different countries tackle the services / funding question; I think it’s a helpful background for critiquing our own system and figuring out how to improve it. I look forward to reading your views on the DSM too.

  3. My son is 18. At age 5 his psychiatrist at the time trusted my intuition regarding his need of meds…ritalin for lack of focus or anti-depressants for hyper-sensitivity. He was on ritalin 8 years until we started homeschooling.
    I didn’t know if my son would regress at age 3. Then, I didn’t know that my son would end echolalic language in grade 4. I couldn’t see the future. He started Tech College before he would have graduated from high school.
    The thing is, looking back, I can see that the “#1” problem he had was never addressed. He is Dyslexic. Is that in addition to “PDD-nos”, or has that been his problem all along. If he had received a label of dyslexia, would he have been treated differently in school? He was always at the top of his “Behaviorally Disordered” class, at one time given recognition for being a positive leader. Would things have been different if he had been considered learning disabled instead of mentally ill? I’ll never know.
    I can’t speak for everyone, but Dr. Francis does speak for me. I wish I had known then what I know now.

    • Very interesting experience usethebrain. I find myself far more sympathetic and open-minded to Frances, the more I find out about the details of his views. That won’t be a popular thing to say, but I think at the very least that his perspectives and experiences with the DSM and its processes, are valuable ones to take into account when considering what is for the best for our children.

  4. Mary says:

    This is definitely a problem. For Autistic children to receive the badly needed services they must have a diagnosis and evaluation by a qualified individual. As a teacher, I have seen children who have not been diagnosed or misdiagnosed. One informative site is http://www.medicalbug.com/what-is-autism-what-causes-autism/ for basic information. It is very difficult for Autistic students to compete and function successfully without support. Our system definitely needs to be critiqued. I will not argue that point, but I believe that we need to stand up for our children. All children should have available services if needed.

  5. Sunshine says:

    I would like to see some evidence that a diagnosis is harmful for some individuals. I have an instinctual belief that, for some, the expectations of the people around them change enough that a label can be debilitating. But I don’t really trust my instincts.

    A lot of us learn about autism for the first time in any real depth when our children are diagnosed- and then we recognize some of our own traits wrapped up in the criteria. Would I be who I am, and would I be as capable as I am, if I had been given a label as a child? I wonder. At the same time, I watch my son go through early intervention, and I get downright wistful. There are things ABA has taught him now that I didn’t figure out on my own well into adulthood. Is there even a way to quantify the pros and cons of a diagnosis for an individual? I wonder.

    • Some of the potentially serious harms of a diagnosis are because of the issues I summarised in my post:

      If the diagnostic tool you are using to diagnose in the first place, is an imprecise and in some ways untested instrument, then the diagnosis itself is going to be potentially questionable. An incorrect or inaccaurte diagnosis doesn’t help – and can harm – particularly if the child has some other condition that is being ignored or overlooked because of the misleading diagnosis. Furthermore, even if it is accurate, as he says, too often there is a “let’s medicate with drugs” response (which of course is that much worse if the diagnosis was inaccurate). And then there’s the concern he has that the focus should be on the individual and their presented symptoms, and responding to that individual and their presented symptoms, when sometimes (often) the diagnosis can take over the approach and potentially blind the professionals and carers to alternative (and possibly more accurate and effective) ways to address the issues.

      I think there are real concerns there. I think from your comment you’ve presupposed the correct diagnosis and are asking “what’s wrong with getting it right?” So, as I’ve said (and as I understand it), the response to that is (1) more fundamental issues around whether it is correct because of the current tool, and (2) issues around the reactions to the diagnosis because of the problems with the primacy of diagnosis.

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