I’m sorry to see that on social media several people think our paper aims to discard their experiences and struggles and feel their perspective is not being heard. I’d like to clarify something that in hindsight I wish we had included in the paper. The discussion about reification is first and foremost intended to explain that classifications as ADHD are umbrella terms (heuristic constructs – the DSM calls them). Our aim is to be inclusive, not exclusive. We feel the dominant biological/medical narrative that suggest *everyone* with a classification has a different or even malfunctioning brain (although it could be true for some people) is excluding many other related factors. Research shows many different potential causes, and the mix of factors are different for each person. This perspective should give agency to different professionals, but also to ‘lay-persons’ who might have avoided a formal psychiatric classification but do have experiences with feeling restless, having trouble focussing or other criteria that could lead to an ADHD classification.
Having said this, I strongly feel we should keep the reified notion of ADHD as a brain disease as far away from children as possible. There is no research that can justify deterministic and generalizing claims about malfunctioning brains containing insufficient dopamine or brain development that is too slow. Research shows differences on a group level at most, that do not apply to every or even many children, and differences do not imply disorder. The ADHD narrative is severely polluted and many professionals should reconsider the information they provide.
Hi Steve,
Thanks for your comment. Although we were as thoughtful as possible choosing our vocabulary, I have to admit that in retrospect I’m not too thrilled by words like ‘medicine’ and ‘diagnosis’ either. Although I’m sure that some keyfigures in the ADHD-community have willfully introduced some rhetoric elements into the discourse, I think most of such reifying language has become a bad habit that most of ‘us’ are not aware of and that’s hard to break, so thanks for keeping us sharp.
Having said that, I also want to distance myself from words like ‘fraud’. Although I find myself angry at times with the state of affairs as they are (and I might even have been judgmental about Allen Frances when I met him) I think such words have a tendency to polarise, creating a dichotomy where we should be seeing the different shades (even if they seem grey). I think for instance the DSM-IV-TR guidebook is quite thoughtful on ‘ontological issues’ and dimensionality of behaviour.
Despite unholy forces from the overly liberalized healthcare market āparticularly in the US, I think most psychiatrist like Allen Frances have good intentions, and we have not intended to suggest ADHD is a fraud. Some children are really difficult to deal with, even if it is just their temperament in most ācasesā that has spiralled into problems in interaction with overworked parents, stressed out teachers in overcrowded classrooms, off-the-scale divorce rates and other sociological issues.
However, yet another possibiltyāin line with the biopsychosocial model Allen Frances proposes on the video of the MIA homepage- is that the heterogenous group of those being diagnosed might also be populated by some FAS children. These are notoriously hard to distinguish from children who have attentional problems for other reasons. I feel this could even explain some of the small, average, group differences in anatomical studies looking at brain size. I do not want to suggest they should be treated with drugs (theyāve had their share Iād say) but it does suggest that we should really keep communicating with biologically oriented professionals and avoid going from a biological narrative straight into an exclusively psychosocial one. Although for this small subgroup of children Iād say the social adversity and low SES related to drug abuse should be our first concern āas is often the case.
Kind regards, Sanne te Meerman
Dear Robert,
With regard to your stance on the ‘smaller-is-not-a-dysfunction point’: that is an interesting angle. My perspective was that not mentioning this would leave the option open that those diagnosed that do have smaller brains indeed have a verified brain disorder. With regard to the IQ argument: I think this is also a very interesting point. Seems very plausible that some in the heterogeneous group diagnosed with ADHD indeed are simply bored and unruly because of this, although I would not expect all that much from this -the IQ scores are merely averages as well-. Many diagnosed will probably have IQs as the rest the of us mortals – they’re almost normal humans :-). However, I personally do not feel that leaving the IQ scores out attests to a lack of ethics as it wasn’t the research question of the authors. Although we were not aware of this -we didn’t see the appendix- it would not have been our central argument I think. It is great that you retrieved this additional info though as it is indeed an interesting finding in itself. Thank you for this thoughtful petition, I hope my thoughts help to sharpen your thoughts even further.
With several scientists from the Netherlands I have written a response to The Lancet Psychiatry, due for publishing June, 2017. Our criticism is mostly centred around the overlap between the research groups, mentioned here as well. The authors of this petition add some great points to this. However, I do concur with Kjetil Mellingen who comments on some important missing things, like the correlation-causation error, and the fact that brain size differences do not necessarily implicate dysfunction. Additionally, the fact that brain size catches up later in life āand growth is another bell-curved variable in which people vary- is an extra argument that emphasizes that brain size does not equal illness or disorder. In my view these points could have replaced some of the weaker arguments of the petition.
Personally, I think a little too much has been made of the apparent error in the paper with regard to the confidence interval of the Accumbens. As figure 1 of the paper shows, this is a typo (the figure indicates that the authors have meant -0.10). Additionally, I do not think the fact that several sites that provided data for the study show different, sometimes even bigger, brain parts should be an argument for retraction necessarily. Increasing power by adding sometimes conflicting findings seems one of the points for doing a meta-analysis. Also, the fact that not all controls were healthy does not seem like a strong argument. Arguably, the common use of well-controls is more problematic as they are not representative of ānormalā people and thus impede generalizability.
However, the far-fetched conclusion of the research article not justified by the data is sufficient reason for retraction and the editors of the Lancet Psychiatry should have prevented such clear logical and scientific fallacies from being published. The unreliability of the results and the resulting validity problems the authors of the petition expose in addition to this are additional strong arguments why these far-fetched conclusions should not have been published.
I’m sorry to see that on social media several people think our paper aims to discard their experiences and struggles and feel their perspective is not being heard. I’d like to clarify something that in hindsight I wish we had included in the paper. The discussion about reification is first and foremost intended to explain that classifications as ADHD are umbrella terms (heuristic constructs – the DSM calls them). Our aim is to be inclusive, not exclusive. We feel the dominant biological/medical narrative that suggest *everyone* with a classification has a different or even malfunctioning brain (although it could be true for some people) is excluding many other related factors. Research shows many different potential causes, and the mix of factors are different for each person. This perspective should give agency to different professionals, but also to ‘lay-persons’ who might have avoided a formal psychiatric classification but do have experiences with feeling restless, having trouble focussing or other criteria that could lead to an ADHD classification.
Having said this, I strongly feel we should keep the reified notion of ADHD as a brain disease as far away from children as possible. There is no research that can justify deterministic and generalizing claims about malfunctioning brains containing insufficient dopamine or brain development that is too slow. Research shows differences on a group level at most, that do not apply to every or even many children, and differences do not imply disorder. The ADHD narrative is severely polluted and many professionals should reconsider the information they provide.
Hi Steve,
Thanks for your comment. Although we were as thoughtful as possible choosing our vocabulary, I have to admit that in retrospect I’m not too thrilled by words like ‘medicine’ and ‘diagnosis’ either. Although I’m sure that some keyfigures in the ADHD-community have willfully introduced some rhetoric elements into the discourse, I think most of such reifying language has become a bad habit that most of ‘us’ are not aware of and that’s hard to break, so thanks for keeping us sharp.
Having said that, I also want to distance myself from words like ‘fraud’. Although I find myself angry at times with the state of affairs as they are (and I might even have been judgmental about Allen Frances when I met him) I think such words have a tendency to polarise, creating a dichotomy where we should be seeing the different shades (even if they seem grey). I think for instance the DSM-IV-TR guidebook is quite thoughtful on ‘ontological issues’ and dimensionality of behaviour.
Despite unholy forces from the overly liberalized healthcare market āparticularly in the US, I think most psychiatrist like Allen Frances have good intentions, and we have not intended to suggest ADHD is a fraud. Some children are really difficult to deal with, even if it is just their temperament in most ācasesā that has spiralled into problems in interaction with overworked parents, stressed out teachers in overcrowded classrooms, off-the-scale divorce rates and other sociological issues.
However, yet another possibiltyāin line with the biopsychosocial model Allen Frances proposes on the video of the MIA homepage- is that the heterogenous group of those being diagnosed might also be populated by some FAS children. These are notoriously hard to distinguish from children who have attentional problems for other reasons. I feel this could even explain some of the small, average, group differences in anatomical studies looking at brain size. I do not want to suggest they should be treated with drugs (theyāve had their share Iād say) but it does suggest that we should really keep communicating with biologically oriented professionals and avoid going from a biological narrative straight into an exclusively psychosocial one. Although for this small subgroup of children Iād say the social adversity and low SES related to drug abuse should be our first concern āas is often the case.
Kind regards, Sanne te Meerman
Dear Robert,
With regard to your stance on the ‘smaller-is-not-a-dysfunction point’: that is an interesting angle. My perspective was that not mentioning this would leave the option open that those diagnosed that do have smaller brains indeed have a verified brain disorder. With regard to the IQ argument: I think this is also a very interesting point. Seems very plausible that some in the heterogeneous group diagnosed with ADHD indeed are simply bored and unruly because of this, although I would not expect all that much from this -the IQ scores are merely averages as well-. Many diagnosed will probably have IQs as the rest the of us mortals – they’re almost normal humans :-). However, I personally do not feel that leaving the IQ scores out attests to a lack of ethics as it wasn’t the research question of the authors. Although we were not aware of this -we didn’t see the appendix- it would not have been our central argument I think. It is great that you retrieved this additional info though as it is indeed an interesting finding in itself. Thank you for this thoughtful petition, I hope my thoughts help to sharpen your thoughts even further.
With several scientists from the Netherlands I have written a response to The Lancet Psychiatry, due for publishing June, 2017. Our criticism is mostly centred around the overlap between the research groups, mentioned here as well. The authors of this petition add some great points to this. However, I do concur with Kjetil Mellingen who comments on some important missing things, like the correlation-causation error, and the fact that brain size differences do not necessarily implicate dysfunction. Additionally, the fact that brain size catches up later in life āand growth is another bell-curved variable in which people vary- is an extra argument that emphasizes that brain size does not equal illness or disorder. In my view these points could have replaced some of the weaker arguments of the petition.
Personally, I think a little too much has been made of the apparent error in the paper with regard to the confidence interval of the Accumbens. As figure 1 of the paper shows, this is a typo (the figure indicates that the authors have meant -0.10). Additionally, I do not think the fact that several sites that provided data for the study show different, sometimes even bigger, brain parts should be an argument for retraction necessarily. Increasing power by adding sometimes conflicting findings seems one of the points for doing a meta-analysis. Also, the fact that not all controls were healthy does not seem like a strong argument. Arguably, the common use of well-controls is more problematic as they are not representative of ānormalā people and thus impede generalizability.
However, the far-fetched conclusion of the research article not justified by the data is sufficient reason for retraction and the editors of the Lancet Psychiatry should have prevented such clear logical and scientific fallacies from being published. The unreliability of the results and the resulting validity problems the authors of the petition expose in addition to this are additional strong arguments why these far-fetched conclusions should not have been published.