Review of Allen Frances’ “Saving Normal.”

Saving Normal” is a provocatively titled book by the equally provocative Allen Frances. He has at times been demonized in the autism community, particularly for his views about the over-expansion of the autism diagnosis; whereas many in the autism community fear too few are diagnosed and fear the reduction of the diagnostic category, Frances believes too many are incorrectly diagnosed and that the diagnosis has hit “fad” status. I have read many of his articles and have consistently found him to be a very considered thinker and writer, and someone who is often misunderstood – his messages get over-simplified by others in a way that makes it an easy (but misguided) target. I think much the same of this book: It is a well-considered and thoughtful book, with a message that would be easy to attack and dismiss if you overlook the complexities that he tries hard to identify and address.Saving Normal

With that warning in mind then, the briefest way to explain the key concern of the book is that Frances would like us to “save normal” – to recognise that diagnostic over-inflation is unhelpful, even dangerous, and only getting worse. He argues that the boundaries of normal are being ever-eroded, with the backing of many interest groups, and particularly due to the influence of “Big Pharma.”

Before I go any further, I want to point out one rather glaring factual error that is relevant here and that gets repeated three times in the book: Frances claims “Manipulating the market is particularly easy in the United States because we are the only country in the entire world that allows drug companies the freedom to advertise directly to consumers” (my emphasis). I just happen to live in the only other country in the world that allows exactly this – and we have been doing it since 1981, ie well before the USA stumbled into the mire. It’s a shame Frances has missed this point, because I suspect there are strong lessons to be learned by (a) comparing NZ and the USA to other countries who don’t allow the advertising (he focuses on just the USA, limiting his relevant pool of data for his conclusions), and (b) comparing the USA to NZ to see why the two countries have had (somewhat) different outcomes with the same freedoms. This error made me a bit suspicious of what else he may have got wrong in the book, but having now noted it I will put that to the side for the rest of the review.

Frances looks at a number of past, present, and predicted future fads, to support his case. Obviously of most interest to me – and no doubt to my readers – is his look at autism. As the chair of the DSM-IV task force, and a vocal critic of the DSM-5, his views on what is happening to the autism diagnosis is an important and well-informed one. Here though – as in other parts of the book – I was frustrated by the lack of detailed analysis that I had hoped for from someone with his background and experience. Nevertheless he does effectively use autism – alongside other conditions – to make a strong case that while many people are over-diagnosed, many do go undiagnosed, and he does explain why that is.

Even though his examples are almost always ones drawn from what he is most familiar with – the situation in the USA – I was able to see how it related to me here in New Zealand too. I found some of his solutions to fix the problems he sees, particularly frustrating though, because I see some of his “fixes” in place here in New Zealand, and a huge number of families suffer the consequences of the ridiculous bureaucracy and lost funding that then gets poured into those “corrective” measures. For example, Frances advocates assessing children on actual need for school services and funding instead of basing it on a diagnosis, however we here are in the position of watching endless millions pouring into the salaries and structure of a system that guards our families from accessing much-needed funds unless we continually prove the ongoing nature and severity of a condition; it is never enough to have a diagnosis from a highly-trained professional, our families are forever having to prove themselves, even for children with life-long and severe conditions. Obviously if you put a system like this in place to correct the existing USA issues of so much (too much) power being put in the hands of a quick and one-off diagnosis, you need to make sure you don’t further harm the very people you are trying to help.

Even though I took issue with some of Frances’ suggestions for improving or correcting the system, it is obvious that something does need to be done in the face of the current trends of pathologising what is in fact “normal,” a trend that is perhaps most obvious in the USA but is growing elsewhere too (I recently read  “Crazy Like Us” by Ethan Watters which had a good look too at the westernization of mental illness, that is also worth a read). Furthermore, Frances has the bravery and foresight to at least suggest some fixes, instead of simply identifying the problem. “Brave” is a word that I think does apply more generally to Frances too: he is a very honest man, who puts himself on the line in this book – exposing his past failures, and putting his own neck out when he could have just as easily kept quietly to himself and not caused a fuss with his colleagues around these issues. It takes a certain openness and integrity to do what he has done in this book; the sort of person you’d want to be present and active in the discipline of psychiatric diagnosis.

After the book has made its way through definitions, fads, and fixes, Frances ends with a few rather more intimate stories and suggestions, that changed the tone of the book and – I think – further reveals the complexities of the issues themselves and of Frances’ views. He gives advice for how we as individual consumers of mental health services, can aid ourselves to be better informed and more careful about quick diagnoses and quick fixes. He also shares some stories that are both sad and hopeful about what can go so right with a careful diagnosis, and what can go so wrong with careless diagnosis. It would be hard to read those final sections of the book, and not be emotionally affected by them. Through these stories and his eventual book conclusion, Frances makes his case that even though there are serious issues with the current trends of over-diagnosis, there is also very much good that can come from the field of mental health and psychiatry. Essentially, he implores us not to throw the baby out with the bath water.

In my own conclusion then of the value of this book, I would say this: No matter your views on Frances himself, on over-diagnosis, on autism and its trends, or psychiatry in general, this book is a valuable resource that makes arguments we should not ignore or be ignorant of. Whether you are convinced by him or not, Frances has some important things to say, and has put his neck on the line to say them. I am glad I made the time to read this book; it challenged me to see things differently, it annoyed me at times, it amused me and made me sad and hopeful, and – perhaps most importantly – further convinced me that there is something deeply wrong with the way psychiatry and the DSMs are currently progressing. There is a public conversation that must be had about this issue, and this book forms a good launch-pad for that vital conversation.

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7 Responses to Review of Allen Frances’ “Saving Normal.”

  1. Thanks for the review, food for thought. Speaking of over diagnosis, I personally know of one child who has been diagnosed with autism and the parents have taken it on board. I know without doubt that the child is not autistic, however, it is not my place to tell them. The child is now 10! There lies the difference between parents who read to stay informed and those that don’t bother!

    • Yes, I’ve seen such situations too and heard of many more, but I never feel it is appropriate to tell the family what I think about the diagnosis unless they explicitly ask what I think – it can be such a sensitive issue and people get (quite understandably) defensive about their children’s diagnoses. I just hope that the professionals in that child’s life are always acting with the child’s very best interest in mind, or has a particular insight or driving factor that I’m not privy too. There are some situations where even the parent knows the diagnostician got it wrong and has to go to another professional to get a more accurate (and helpful) result, so this sort of thing – getting a diagnosis wrong – clearly can and does happen. Frances includes some interesting and eye-opening real-life examples in his book – including an example of an autism diagnosis gone wrong.

  2. grahamta says:

    Very thoughtful review…thanks. You mentioned basing services on need. Where I am in the U.S. that is how the preschool/school services are provided (based on need). OT/PT/speech/behavioral all do separate evals and base the hours on the evaluation results. There is a certain % delay that is considered okay, and then services are not given (I guess they consider it margin or error?). The only problem with this system…sometimes the delays grow as a child ages. It happened to my kid. They assessed her at 2.5 and just thought she had some behavioral issues she would grow out of for the most part, so she got a few hours total. A new team was assigned at age 3 (per standard procedure in our area, at 3 everything changes to a new team) and she got a full intensive program because by that time it was blatantly obvious…obsessions and stims were through the roof! So, sometimes basing just on “need” is very tricky in the young kids. We were a weird case though…she had a lot of words at first and she was misleading on her severity when young. Now she is 6…very, very obviously has autism. On the flip side, I have an engineering degree, and I know a lot of quirky people that would not have wanted to be considered abnormal as children. They grew up to be productive members of society. One person had horrendous handwriting and the parent/teachers just said that is the way he is…he is one of the smartest and creative person I know and not getting OT while young didn’t impact him in the long run. Clearly these are people, if they would have been diagnosed at all, would be on the very high end of the spectrum, but it is a reminder that it is hard to know where to draw the line.

    • Indeed. Related to this, part of what Frances talks about in his book is that where it is unclear whether someone meets a diagnosis or not, that it is best to wait for more time and observation rather than rushing into a diagnosis, and I think that ties in to his preference that service provision is needs based rather than heavily diagnosis based. As with MJ’s comment below, the remaining problem is that needs-based services are also clearly in need of a careful consideration and overhaul themselves! Thanks for commenting and sharing grahamta.

  3. M.J. says:

    “For example, Frances advocates assessing children on actual need for school services and funding instead of basing it on a diagnosis, however we here are in the position of watching endless millions pouring into the salaries and structure of a system that guards our families from accessing much-needed funds unless we continually prove the ongoing nature and severity of a condition”

    I think you might have missed the underlying point Frances was trying to make. In the US, or at least where I live, the diagnosis is just the first step to accessing services. Once you get the diagnosis then you have to continually prove the ongoing nature and severity. The current system is the worst of both worlds.

    For example, to access ABA services in my state you first need a diagnosis of autism to even be considered. Once you have the diagnosis then you need to get an initial evaluation to prove that ABA services are required. Once you start the services you have to have evaluations two to four times a year to prove that the services are still required.

    All of these evaluations are submitted to a faceless government bureaucracy or insurance company (or worse, both at the same time) that can veto the services for any reason they feel like leaving you to try and fight to get them back. So over time it almost turns into a game. You have to show some progress at each evaluation but not too much. If you show too little progress then the services are cut because it isn’t working, but if you show too much progress then the services are cut because it isn’t needed anymore.

    And that happy balancing act is just for one individual service. There is a similar yet independent process for each and every service and, just to make it extra fun, each service has its own unwritten rules of what you need to show at each evaluation to continue to get services. So there are evaluations for speech and language services, evaluations for OT/PT, evaluations for the school system, evaluations for speech services inside the school system, evaluations for OT services inside the school system, and so on. It gets to the point were you have an evaluation to prove ongoing need for something every other month.

    So I think that what Frances is referring to is that sometimes the initial diagnosis is sometimes rushed so you can get in the door. Or sometimes the child needs a service that is relatively easy to get with one diagnosis but extremely hard to get with another so the child gets an incorrect diagnosis simply to make it easier to get what they need.

    For example, a child may have a learning disability but also may have some motor problems that need to be addressed. The learning disability diagnosis won’t be enough to automatically open the door for OT. You can try and go kick down the door without an appropriate diagnosis which will sometimes work. Or you can try for a different diagnosis, such as autism, that will open the door. But even once you are past the door you still need to prove that services are required.

    The people making the diagnosis know this is how the system works and since their goal is to get the child the appropriate services as quickly as possible they will give an inappropriate diagnosis just to open the door.

    • Thank you for sharing that further detail about how the system works MJ. I think the fact this didn’t come through clearly in the book or in Frances’ suggestions is an expression of one of my concerns about the book – he frequently doesn’t go into detail where it is much needed, and has a tendency to instead repeat certain points over and over in the book, which made it at times quite a dragging (but nevertheless important) read. Thanks for commenting and clarifying.

  4. caelesti says:

    I thought that was a great book, and I share a lot of the author’s concerns esp. about Big Pharma’s influence. Though I tend to prefer the idea of deconstructing “normal” rather than saving it! I also thought the author did not give enough credence to social causes of mental health problems- while there is a biological reality going on, I also believe the stresses of our societies are causing the “canaries in the coal mines” as it were to stop singing. In some ways we’re more tolerant of eccentricity, in other ways less than in the past. I think many people are misdiagnosed, and there is both under and over-diagnosis going on in the U.S. It seems as if white middle class parents sometimes use the system to their advantage to get services their kids may not need, and poor & minority students are more likely to get more stigmatizing labels even for the same symptoms/traits, more likely to be put in segregated classrooms, harshly disciplined or end up in the juvenile “justice” system or foster care. Gifted education is also neglected, and bored gifted children often act out or perform poorly and are labeled with learning disabilities.

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