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.

Friday, January 12, 2007

Those Funding Blues

Recently the Ontario government (Ministry of Children and Youth Services) commissioned a survey of those families waiting for intensive behavioural intervention services. The Bear has been on the list as of March 2005 (note that ‘on the list since’ means that she is still ‘on the list’ - 22 months and counting), so we received the survey. One of the questions was "If IBI services were to become available, which service option do you prefer?"

  • Direct funding option (DFO)?
  • Direct service option (DSO)?

Under the DSO option, the local service provider agency is assigned to the child, and is responsible for administering the child’s program, providing the Senior and Instructor therapists, and providing ongoing clinical supervision of the child’s IBI program. There is no cost to the family associated with the DSO choice.

Under the DFO option, the parents/guardians are responsible for administering the child’s program by purchasing the services of private IBI providers. The government designated agency’s contact is with the family, not the IBI provider. The family assumes all the responsibilities of an employer, although the service provider must be approved by the designated agency, in accordance with ministry guidelines, and the agency provides financial assistance to defray the cost associated with the purchase of private IBI services, at the current rate of $31 per hour. All paperwork and account reconciliations associated with the DFO option must be completed by the family on an ongoing basis. Also, funding is for IBI only, and does not cover other associated costs (e.g. training, travel, supplies, photocopying, etc).

There was a number provided for more information, and in an attempt to be a diligent parent I called it. At this time I learned the ‘other’ rules.

It turns out that the program mandates 21 hours per week of IBI under both DFO and DSO. This 21 hours is mandatory. We cannot opt in for 15, 20, or any other variation below 21 hours per week. Under the DSO option, the child must be available for instruction between the hours of 9AM and 4PM each day (um, this is significantly more than 21 hours per week, isn't it?).

I raised the point that the Bear, currently 3yrs and almost 7 months old, is supposed to start K1 in September 2007 (for the uninitiated, K1 and K2 are the new terms for Junior and Senior Kindergarten). How would she do this if she had to be available during the above-mentioned hours? The answer – parents need to make a choice as to whether to participate in the IBI program OR enroll in Kindergarten.


The local agency also runs the preschool speech and language instruction in our area, and the Bear participated in a 10 week group PECS session as part of this. She thrived in these sessions. While she didn’t seem to pay any attention to the other children, she seemed to grasp many of the group concepts very well, in fact, much better than the other children. This leads me to believe that she may actually benefit considerably from mixing with other children and participating in kindergarten.

In addition, we live in a rural community, and the local school seems to be quite good. I met with the principal and the local autism coordinator last summer, and I was pleasantly surprised by how well they handle certain things. As an example, the older children are tasked with the responsibility for keeping an eye out for special needs children, and making sure that they are safe, can participate, have ‘buddies’ during recess, etc. I asked my neighbour's children about this (the youngest is currently in her last year at this school, and the eldest attended until recently), and they both confirmed this practice and that there was definitely a sense of community, acceptance and watching out and helping those children with special needs. The youngest stated that she currently spends some of her recesses playing with a younger autistic boy, and that they both enjoy this time.

The other factor is that if the Bear starts K1 with the other children then she will be part of that year’s intake. She will be no more the 'new kid' than anyone else. By Grade 1 she would be familiar with the other children and them with her - part of the scenery. If she starts Grade 1 after missing K1 and K2 she will be the 'new kid’, and may have a tougher time being accepted by those who have already known each other for two years and have previously established friendships, groups, etc. Autism may make this even more difficult. My preference is therefore that she starts K1 on day one, just like everyone else.

So, DFO seems a natural choice, right?

But, there are issues here too. The first is that requirement of 21 hours. Is it just me, or does 21 hours not divide evenly into five days (assuming that four hours and 12 minutes is not considered ‘even’)? Second, K1 and K2 are either in the morning (9 – 11:30) or afternoon (1- 3:30). Neither of those blocks of time allow for an easy integration of 21 hours of IBI, although the morning Kindergarten sessions are a better fit. Neither option fits well with a 9 to 5 work day with a lunch break. Again, 15 hours works out much better, but that is not an option if one wants to access funding. Or, one can choose to forgo Kindergarten. Or maybe play hooky one day per week?

Then comes the additional issue of costs. At a rough calc of per hour charges, 21 hours of IBI at current rates is nearly $51K per year. The DFO funding will cover nearly $30K of that, leaving a shortfall of $21K to be covered by the family (although it is less than we are currently paying for 15 hours - Wow, we get to pay less!). For many families that is still a prohibitively expensive cost, removing the DFO option from the table. This funding does not cover psychological services costs, which I’ve heard are a mandatory part of the DFO process but are not a billable part of the $31 per hour coverage. So the $21K is probably an under-estimate.

So let’s get creative here. Assuming one can afford DFO, or can negotiate with the DSO provider, can the IBI be delivered at school? That would certainly solve some of the scheduling issues for either approach. But, no, the school boards do not allow IBI or any outside agency to deliver services on school property. These are the same school boards, by the way, that may also provide zero, part time, or shared EA support instead of the full time support that may be required for a child. I can partially understand why (e.g. liability), but surely someone could find a way to cover off the issues?

So where does that leave us? If we want the DSO option (or if it is all we can afford) then we have to choose to forgo Kindergarten, resulting in missed learning, socializing and bonding opportunities that may also have consequences in Grade 1 and subsequent years. If we want the DFO option then we either forgo Kindergarten or still have significant scheduling issues, plus we have a shortfall of $21K or more per year.

I know that some out there are not fans of IBI, and will recommend forgoing it. My reply to this is that we have found IBI helpful for the Bear. I can raise the same points again about her instruction: the lack of aversives or any negative conditioning, that no attempt is made to eliminate her stims, that no attempt is made (or desired) to enable her to ‘pass as NT’, that the goal is to teach her skills to enable her to better and more independently function in the world, that part of the program involves following her lead, etc., but these points are already made here and tangentially here. I could also mention that IBI is one of the methods used to educate the Bear (we’re also fans of the ‘More than Words' approach by The Hanen Centre, which we practice at home, and Dr. Gernsbacher’s thoughts here are quite familiar to us through earlier papers and her website - I especially recommend the videos here).

But regardless of these points, we find that IBI has been helpful to the Bear and would like to continue it as part of her educational program. We have a provincial government that is theoretically committed to helping the Bear through programs that they both authorize and fund, a local support agency that recognizes the issues but has to work within the rules handed down, and a school board that may or may not fund an EA but won't let anyone else lend assistance on school property.

Why is this so difficult?