Wednesday, January 17, 2007

Talking About 'Crap' and GI Issues

There seems to be a bit of a stir lately in the community of those linked by autism. The subject? 'Crap', AKA bowel movements.

Kim Stagliano recently posted The Crappy Life of the Autism Mom on The Huffington Post. In this post she suggested that there were different severities of autism, that some levels of severity justify efforts aimed at ‘recovery’, and used a particularly graphic description of a “crapisode” to illustrate a “taste” of what autism looks like in her household, to justify the intervention.

As well as the ‘tell it like it is’ support that Ms Stagliano’s post drew, it also drew a lot of fire. A good mix of views of those opposing the post can be found in this post and comments on Do’C’s Autism Street blog. Objections included attempting to separate out the neurodiversity proponents from the ‘severe’ kids (the implication being that the first group can’t speak for the second), that this viewpoint is all about the parents rather than the kids, that some are attempting to divide the world into HFA and LFA based on toileting abilities, that raising the issue does nothing for autistics’ sense of self-value but instead demeans them, and that such issues affect only a small group of autistic children. Wade Rankin's Injecting Sense blog also raised the Stagliano post and the reaction to it here as an example of the divisions with the community of those linked by autism.

For what it’s worth, my daughter is a paid up member of the ‘Problem Poo’ club, as I described here. Since that post, not only has the issue not been resolved, but it has worsened. I will state that aside from the occasional hand in the wrong place at the wrong time, the Bear does not ‘smear’, ‘play’ with the problem or exacerbate it in any way. And FWIW, I’m now quite familiar with the procedures for using a suppository and renting a rug shampooer (not necessarily connected). Having said that, we’re working through it. Obviously the biggest sufferer is the Bear. It tears my heart out to watch her struggling in pain. But my pain is emotional – hers is physical and it is worse.

Anyway, the following are a few thoughts on the 'poo' issue, GI issues, and comorbidities in general.

First, we don’t know the degree to which autism and various comorbidites are linked, in part because there hasn’t exactly been a wealth of large scale peer-reviewed studies. Anecdotal evidence abounds (e.g. the OT at the local autism support agency – and neither she nor the organization subscribe to any particular causation philosophy – suggests that in her experience the issue is quite common), but the evidence is just that – anecdotal. Counter-anecdotal evidence also abounds – "My autistic child doesn’t have these issues" is also anecdotal, BTW. There are probably a wide variety of ‘causes’ of autism(s), and one person’s lack of affect cannot be assumed to imply a universal lack of affect, any more than the fact that my child has issues (that may or may not be related to autism) indicates that all autistic children have similar issues.

We need to determine whether there are subgroups of autism in which comorbidities may occur and/or potentially affect overall autistic presentation, and the way to do that is through peer-reviewed research. The CHARGE study being conducted by the M.I.N.D. Institute at UCDavis is a good start.

Second, I agree with Do’C’s statement - other than the 'very small portion' part, which I would suggest is unknown - from his post that:

"I won’t claim that feces is fun to clean up, it’s not. But complaining about this not-necessarily permanent aspect of only a very small portion of autistic children is probably not going to instill any sense of 'value as people'. To the contrary, it’s probably more likely to demonize autistic children as 'inconvenient.'"

There is evidence that "the human disgust emotion may be an evolved response to objects in the environment that represent threats of infectious disease." As such, it should not be a total surprise that those who endure ‘shitstorms’ are not particularly fond of them and regard them as more than just a minor inconvenience. Of note, the research suggests that this response diminishes with age. The issue is how we deal with this ‘disgust’. I personally have no issues with raising BM and related issues, as long as it is done for the right reasons. From Leila’s comment on Do’C’s post:

"If we want to keep discussion honest, we also have to talk about how hard it is to deal with the difficulties that autism brings, both for the autistic individuals and their parents and siblings. If it was all positive, we wouldn’t all be so eager to exchange information and support through the blogosphere, in order to try to make sense of all what happened to our lives."

I would also agree though that raising the issue to differentiate between 'degrees of severity' to justify who can and cannot speak about autism, or in some other way to exploit the issue, is wrong.

Third, I would suggest that toilet training is potentially more difficult for autistic children. Not in all cases, but definitely for some, and maybe for more than just ‘some’. I would suggest that there are overlapping ranges on this one. As an example, men are - on average – faster runners than women. But the top few percentiles of women runners could leave most men in the dust. Many children, whether NT or autistic, have toilet issues. But – on average – there are fewer communications issues with NT children, which makes the job of teaching NT children – on average – easier. Obviously there are exceptions. Further, autistic children are more likely to have sensory issues that inhibit their perception and understanding of bodily functions and their ability to control them. This too can make toilet training more difficult.

Fourth, while I may be wrong on this, I do detect more than a subtle undercurrent of opposition to raising GI issues, in that somehow they may link to the idea of 'causation' or 'treatment'. FWIW, I do not believe that solving the Bear’s GI issues will render her ‘normal’, and ‘normal’ is not our goal, but I do believe that these issues may have an impact on the severity of her autism. A detailed explanation why is beyond the scope of this post, but you can read more here and here if interested. The following is a quick summary.

There is considerable evidence that the autistic brain has some unique characteristics. Findings by Dr Casanova and others discussed here indicate that the autistic brain has a higher number of minicolumns than average, but with a ‘normal’ number of neurons per minicolumn. While autistic minicolumns are of narrower width and autistic neurons tend to be smaller, the net result is that autistic brains have a larger total number of neurons.

Studies have also shown a postnatal acceleration in brain growth in autistics, resulting in increased brain volume in autistic children vs. controls (e.g. Redcay and Courchesne, 2005, Aylward et al, 2002, among others). As per Hazlett et al, 2006:

"Significant enlargement was detected in cerebral cortical volumes but not cerebellar volumes in individuals with autism. Enlargement was present in both white and gray matter, and it was generalized throughout the cerebral cortex. Head circumference appears normal at birth, with a significantly increased rate of HC growth appearing to begin around 12 months of age. CONCLUSIONS: Generalized enlargement of gray and white matter cerebral volumes, but not cerebellar volumes, are present at 2 years of age in autism. Indirect evidence suggests that this increased rate of brain growth in autism may have its onset postnatally in the latter part of the first year of life."

On their Centre for Autism Research website , Courchesne and Pierce indicate that:

"...children with ASD showed an extremely abnormal pattern of growth: mean head circumference jumped from the 25th percentile at birth to the 84th percentile by 6 to 14 months. And among those at the more severe end of the autism spectrum, 59% showed growth at least 2 standard deviations greater than normal, and 71% showed growth at least 1.5 standard deviations greater. In comparison, only 6% of the normally developing children in the Fels [Fels Longitudinal Study] data showed growth at least 2 standard deviations greater than normal, and 9% showed growth at least 1.5 standard deviations greater."

Thus the autistic brain appears to have more minicolumns, more neurons generally, and appears to grow faster than NT brains.

A normal brain constitutes 2.5% of body mass and accounts for 22% of basal metabolic energy requirements, or BMR (Leonard and Robertson 1992, p 186). The energy required by the brain is even higher in infants and small children. There is considerable evidence that the high cost of brain growth has stretched human metabolic capabilities, resulted in fundamental physical adaptation (e.g. the 'efficient tissue hypothesis' - Aiello and Wheeler, 1995) and resulted in delayed maturation (Foley and Lee, 1991) to meet the high cost of supporting a large brain. In addition, there is evidence that our current brains have actually decreased in size compared with human brains of 35,000 to 10,000 years ago (Ruff, Trinkaus, and Holliday, 1997), as a direct result of dietary limitations. If current human brains are already smaller as a result of nutritional limitations, how much more taxing would a larger and faster growing brain tax be?

Regardless of where one sits on the 'neurodiversity' to 'cure' spectrum, if one believes the (peer reviewed and generally accepted) scientific evidence regarding autistic brain growth, then it is a logical conclusion that the autistic brain requires more resources than average to both sustain itself and to fuel the documented growth spurt. As such, the nutritional requirements and proper metabolic functioning of all children – but especially autistic children - should be of great concern to all sides. The nutrients to fuel autistic brain growth cannot be spontaneously generated – they need to be eaten and absorbed through the GI tract. Bowel issues, as indicative of GI tract issues, should therefore be a primary concern, as should issues of malabsorption, dietary limitations due to sensory preferences, etc., regardless of what percentage of autistic children appear to have them. Rather than being a point of division between the various sides - are these issues causative, comorbid, or coincidental? - I would suggest that this is one area in which we could all agree, even if we get there via different goals and agendas (e.g. ‘cure’ vs. ‘optimal functioning of a naturally different brain’).

Regardless of one’s beliefs, we presumably all want healthy children who are able to function according to their potential, and there are reasonable grounds to hypothesize that autistic metabolic requirements may be different (i.e. higher), based on exceptional brain growth if nothing else. We should all be pushing for more research in this area, and in the meantime it is reasonable for everyone - regardless of beliefs regarding cure vs. neurodiversity - to pay more attention to nutritional and GI issues. When one believes that these issues are being raised in an exploitative manner it is legitimate to 'call' people on this. But in most circumstances, this issue should not belong to only one side.


kristina said...

I just posted about this very topic---thanks for putting so many sources and angles together here.

Yes, I do think Charlie's pain from these sorts of issues is "physical" and "worse" than whatever I might feel; I think he was very much into sensory experience tonight to help comfort himself.

María Luján said...

Hi Ian
My son also had GI issues. Very sorry to hear about the struggles of the Bear .
Beyond the discussions about cures for Autism and treatment for Autism- that I understand many times are well based in terms of complains about- I do not understand
a-The lack of consideration of clinical studies needed in a GI protocol for an autistic child by the pediatrician- to begin with- in combination with the neurologist /gastroenterologist.
b-The lack of the discussion in general and of knowledge of the gastroenterologists/neurologists of the work of Dr Buie and others (Horvath for example). Internet is available for all. Forget about the discussion on causes, I want the look over the real autistic child, potentially in pain, unable to communicate it at 1-2-3 years and in general only presenting the problem as a “poo” problem- or not demonstrating it at all, such as it happens many times. The lack of ability for “reading” an autistic child in pain is extreme in –at least- majority of doctors I consulted.
c-The lack of serious consideration of gluten intolerance/milk intolerance and in general food intolerance as medical conditions of neurological impact- and the concomitant other medical conditions that can be present such as IgA deficiency.
My son was celiac and milk allergic. He was also ill in terms of nutrition- even when his height was considered normal and his weight also. He only demonstrated to have 2 gastroenteritis before we pushed – and pushed and pushed – for other GI tests- and we found a concomitant lot of them with the testing- of course. To begin with, folic acid deficiency, very common in celiac disease.
Thanks for a very balanced post

Ian Parker said...

Hi Kristina and María Luján,

Thanks for stopping by and for the nice words.

I think this issue gets caught up too much in the ‘cure’ debate, and not enough consideration is given to the difficulties autistics have with these issues even if they are not ‘causative’. “If you have issues then go to the Doctor” sounds pretty straight-forward and logical, but with communications and potentially sensory issues too, it is not that simple.

María Luján, I agree with your points. The Bear’s GI issues currently present as constipation (although the opposite issue also occurs often enough too), but via tests conducted through the provincial medical system labs (i.e. no ‘Quack’ in sight) we found other issues related to absorption deficiencies. This is despite the fact that the Bear is currently at the very top end of the range in height for her age, which makes the deficiencies all the more surprising.

Regarding celiac disease and milk allergies, we don’t know about these yet (they are on the list to test and she's GFCF), but celiac disease is present in my mother's family, and I was allergic to milk in my early years. I still get a stomach ache if I drink too much milk, although I seem to be okay with smaller amounts, as well as with yoghurt, cheese, etc. (both of which I love!). On my wife’s side there is also a history of GI issues.

kyra said...

thank you, ian, for this post. i cannot agree more about wanting the discussion to move toward what is going on inside some of the autistic children's bodies and what we can do about it rather than are they autistic or not or how awful that a parent is trying to cure their child or not cure their child or whatever.

Do'C said...

As usual Ian, you've presented a thoughtful discussion about the subject and what I think is an accurate interpretation of a variety of related content. Thank you for this post, I enjoyed reading it.

Wade Rankin said...

A thoughtful and balanced post, as all of yours are. Thanks for an important addition to the discussion, Ian.

mcewen said...

I find it hard to be rational about it. I have one that survives on fresh air and another who wouldn't notice if I fed him prunes for a week.
Best wishes

Ian Parker said...

Hi Kyra, Do’C, Wade and McEwen,

Thanks all for stopping by and for the nice comment.

Kyra, I couldn’t agree more that we need to get past the animosity between the two sides and move on to what is happening in some of our children. This one especially should be an issue that both sides can ‘own’, even if they don’t necessarily agree how they got there.

McEwen, it is definitely one of the puzzles of human development, how we can adapt to different conditions, including conditions that are sub-optimal for development. One could argue that as a species we have been adapting for the last 35,000 years (since the agricultural revolution) via a smaller brain. Even so, there is definitely mainstream evidence that good nutrition can positively affect development (e.g. supplementing with DHA). Regarding prunes for a week with no effect, unfortunately that is sometimes the case with the Bear too.

Could someone please come up with a safe laxative product that has the effect of gentle dynamite?


I wish I had more time to do more than skim your posts, refreshing viewpoint.

'We need to determine whether there are subgroups of autism in which comorbidities may occur and/or potentially affect overall autistic presentation, and the way to do that is through peer-reviewed research.'

I agree wholeheartedly with this point. Autism symptoms, I feel, are just that in some cases, symptoms of another issue. I don't beleive, as some like Wakefield frequetly intimates, that autism is 'caused' by gut issues. But solving the issues in some kids may go a long way in helping them concentrate and feel better at the very least. Gastrointestinal issues in autism are frequently glossed over or ignored by the mainstream medical community, leading parents into the realm of questionable treatments...

Ian Parker said...

Hi Bill,

Thanks for stopping by and for the nice comment. After reading your comments on Kev's blog, it is nice to make your acquaintance.