Comorbidity & Autism (aka Targetting Problems)

25 Jul

Every so often I get emails (as well as blog comments) about my stance on a cure for autism. Here’s a fairly typical example (although its way more polite than most!):

You say it is find (sic) to be autistic and we should seek no cure.So you are happy with a child that smears faeces all over the walls and attacks other children. Bites her mother so badly that her arms are covered in bruises. Cannot be taken outside without two adults controlling her. Where some autistic children cry all the time and look in so much distress. Other autistic children have ill health with high tempertures, excissive (sic) thirst, rashes, bowel problems and the sad thing is parents are blamed for their childs condition.

Its very worrying that so many people (family members, friends and even ‘professionals’) have no understanding of the concept of comorbidity as it relates to autism. Comorbidity is:

[E]xisting simultaneously with and usually independently of another medical condition.

So, there are somethings that autism _is_ and some things that autism _isn’t_ but which may be comorbid to autism. Such as behavioural issues (resulting in biting, hair pulling, smacking, fecal smearing etc), bowel problems, excessive thirst etc etc. The *only things* that can be said to be autistic are those found on the diagnostic criteria. Anything not in the diagnostic criteria is comorbid.

So where does that leave us? Hopefully it demonstrates that I don’t find any of the comorbid conditions my correspondent listed as acceptable. I believe interventions in all instances should be rigorously pursued. Their treatment will not, however, impact in any way on the fact of the child’s autism.

No one I know in the Neurodiversity/autistic pride movement says that autistics do not require interventions or help in some circumstances. One of the founders of AspiesForFreedom regularly comments (not that I can find any to link to! Arggh!!) that he’ll always be grateful for his Speech Therapy.

There is a monumental difference between curing autism and treating/intervening in certain comorbid (and even non associative) conditions. One seeks the total eradication of self. The other aims to help the individual whilst preserving their right to be who they are.

*Update!*

Tesla Coyle makes a vital point in the comments below. I want to repeat it here so its not missed by anyone:

IF the kid needed some sort of behavioral consequences to get him to stop biting, that should be reasonable, but first find out if he trying to “tell” you something important, like he’s terrified.

17 Responses to “Comorbidity & Autism (aka Targetting Problems)”

  1. HN July 25, 2005 at 04:33 #

    There is an interesting book written by a hard science fiction writer who also happens to be the mother of an autistic young man. It explores what happens in a near future world when a cure for autism is found… (sorry, I did mention it earlier in the Book Baton topic, but I thought it was relevant here):

    It is _Speed of Dark_ by Elizabeth Moon:
    http://www.amazon.com/exec/obidos/tg/detail/-/0345447549/

    Being cured does have some personal costs.

  2. Kev July 25, 2005 at 05:15 #

    Thats a great book, I read it a year or so ago (I’m a big Sci-Fi nerd) and thoroughly enjoyed it.

  3. Tesla Coyle July 25, 2005 at 07:15 #

    Another thing about the points made by your letter writer is that we are never privy to the situations that make the child bite, etc, and if the child would cease to bite if he wasn’t put in those situations. Sometimes the situations are entirely optional, like trips to large noisy discount stores or to Aunt Margaret’s house (where there is something about the smell or sounds in Aunt Margaret’s house that make the child feel pain or great distress.

    There is a comment somewhere in the medical literature about a child whose behavior was so bad because she had excessive heartburn (reflux) when that was discovered her behavior became perfectly acceptable.

    Some parents haven’t taught themselves to “listen” to a child that can’t speak. Some parents have found that by tuning in to even a non-verbal child they can figure out what is wrong, other than that, it might take a trip to the doctor (kicking and screaming) to get a blood test or whatever to resolve some questions like “does the kid have an infection?”

    The feces smearing thing is interesting because people love to mention it first. Not all autistic kids do it, of course, but there is a strong innate reaction of “OH! these children must not be allowed to exist if they smear feces!!!” Which comes out of a primal disgust of the idea of the thing.

    IF the kid needed some sort of behavioral consequences to get him to stop biting, that should be reasonable, but first find out if he trying to “tell” you something important, like he’s terrified.

    Lyn Redwood’s son was diagnosed PDD,nos as a child, and on video now, he looks like a kid with PDD,nos. There’s video of him and his mom on Erik Nanstiel’s website, autismmedia.org (.com?).

    I have to say, I think that Lyn looks like she really loves him and enjoys him, but I also think it’s sad that she has taught him that he’s been damaged by mercury and put him through needless “chelation” therapy. She started out thinking it was the MMR vaccine, if I read it right in the Evidence of Harm book.

    She first dscovered there was “hope” for autistic kids -for a price- by listening to the Dr. Jef Bradstreet. That guy is bad news. Somehow he hasn’t managed to cure his own autism spectrum kid.

    Which gets back to the thing that doctors are needlessly frightening parents if they tell them that their 3 year old who isn’t talking will never talk. The parents are ripe for any quackery at that point.

    Lyn Redwood’s son, Will, talks now, at age 11 (it took him a while to get good at it) and his mom credits chelation and all the other “biomedical” treatments, and she wants everyone else believe it, too.It’s really interesting if you stand back and look at it.

    T. Coyle

  4. Alyric July 27, 2005 at 01:06 #

    Talking about co-morbidity, i got a lovely response to an admittedly cynical piece of blogging on skeptico, which trotted out the smearing faeces on cue followed by the second most common ‘autistic’ thing – self injury (SI). Fortuitously, I know something about SI and not because my spectrumite does it either. It is a sign of extreme stress and a wake up call to the parents – don’t blame the autism – SI isn’t a sign of autism or even confined to autism. Find out just what has their self-injuring child in such as state. Blaming the autism for all this co-morbid stuff just leaves the kid right in it and what ‘development’ can one reasonably expect from a child that stressed out – zip zilch and nada.

  5. Camille July 27, 2005 at 06:00 #

    “SI isn’t confined to autism”, is right. It’s very complex, too.
    But looking at stressors has to be the first thing to on anyone’s list.

    I saw a wound on an of an autism spectrum teen’s limb that probably happened because she was having a strange reaction to “novocaine” from a trip to the Dentist.

    Her spectrum father had a weird and similar reaction to novocaine, too.

    She had some kind of sense of unreality and couldn’t actually explain why she did it, but it might have been because she couldn’t feel her extremitiies… or it might have been a more emotional reaction to the “unreality”. The little bit of reading I’ve done on it is that the reasons are very individual, but extreme stress is a common factor.

    Extensive repetitious behavior or lots of self-stimulatory behavior and self-injury in caged animals is seen as a sign that it’s time to change the environment, but in autistics it seems like a thing to decry and point to as a personal flaw or something that makes them unworthy of humanity, or something.

  6. bonni July 27, 2005 at 08:55 #

    I can’t understand why people would think the parents of an autistic child are “happy” about it. I’m not happy about it, because it means my daughter has a much harder life and frankly, so do I, but at the same time, I love her the way she is, autism and all.

    I fear that some parents are sending this message to their child: “We love you honey, but we’ll love you so much more when you’re cured and normal and just like everyone else.”

  7. Camille July 27, 2005 at 20:16 #

    I agree, bonni.

    It’s a little scary. The kids are pressured to never act autistic and some of them can pull it off, but what is the price? Is the kid thinking, I know it scares mom when she catches me staring off into space so I better not ever do it around her or she think I need to be detoxified again?

    Or Dad wishes he had a normal boy who wasn’t poisoned (or autistic.)

    I love my ASD kid, there’s no changing him/her so why not enjoy what there is to enjoy? There’s plenty that my kid is better at than normal people, I enjoy that, too. But at the same time s/he is very disabled there’s no getting around that.

    My ASD child enjoys life and never complains about his/her shortcomings/disabilities. S/he does sterotypical movements in public and looks very strange. So what?

  8. Ian July 28, 2005 at 05:26 #

    Camille,,

    All children wheher NT or ASD will be “pressurised” into some position by their parents, since all parents have expectations of their children, and most don’t live up to that on a daily basis. I don’t think I’d single out parents of ASD children … from my experience, some of the most loving, dedicated and warm parents are those whose children are on the spectrum. On a daily baisis I see parents of NT kids do/say unthinking things to thier children… I think often that parents of ASD kids are overly hard on themselves.

    I love my ASD kids too, and don’t know a parent of an ASD kid who doesn’t express this in a very physical way on a daily basis. However, I can’t ignore the fact that society, as represented by their schoolmates, parents and just plain random people in the street does not react well to them. My kids don’t flap, or stim (apart from verbally), but it doesn’t take a rocket scientist to work out that they’re different withinn 5 minutes, and in a way that most parents /kids don’t either find acceptable or care to bother with.

    I don’t know a single parent of an ASD kid who sends a message either conciously or subconciously that their child is a nuisnace, or that they’re a problem, because they’re not normal. We (meaning those with autistic children) should stop wasting our time beating up each other about not being good parents, and expend our energy on educating society about our children’s uniqueness; their strengths and weaknesses. I’m too old and cynical to believe that society will embrace autism, but I do hope that one day society (ok I’m pointing the finger mainly at friends, parents in your mothers group, childcare, nursery scohol etc) will at least not shy away from the parents as well as their children. Bettelheim is supposed to be well behind us, but old prejudices die hard. If we’re going to spend the precious time we’re not with our children doing something, it should be advocating for a more accepting society.

    And before someone chimes in with the line saying that it’s easy to blame something as abstract as an entity called “society”, I’m not advocating a “get out of jail free” card for parents of ASD kids, I’m simply pointing out that I feel society has along way to go in understanding our / my life. I don’t need anyone to feel sorry for me, because I don’t feel that way: likewise I don’t need crap from poorly informed parents of NT kids

    Ian

  9. Kev July 28, 2005 at 08:26 #

    Ian,

    Unfortunately, lots of parents _do_ seem to have a tendency to send unconcious messages to their kids that who they are (autistics) are a nuisance.

    Consider this from John Best Jr – one of Generation Rescue’s Rescue Angels (whos job it is to council other parents to accept the wonders of Chelation):

    “I don’t JUST want mercury out of vaccines. I want them to pay for me getting it out of my kid and I want them to compensate him for the portion of his childhood that he has missed. It might not work, in which case I want every dime they have for *taking his life away*. And, I want to be compensated for *saddling me , my wife and my other kids with autism*. I want to be compensated for the work I have missed and the jobs I have lost because my wife couldn’t handle my son and came screaming into my workplace for me to leave work and help her.”

    http://groups.yahoo.com/group/EOHarm/message/10208

    Whilst I agree that we shouldn’t beat each other up for being good/bad parents I think that that view is sadly unrealistic. I wish it weren’t, I really do, but the sad truth is that parents like John Best Jr and highly motivated, highly vocal and highly poliiticised people – people like him and Lujene Clarke (who inferred I was mad because I said I had autistic relatives) organised the recent March For Truth. Their mission is to make Mercury the *sole* cuase of autism in the eyes of the law and medical diagnosis. What do you think will happen to worldwide autism research once the whole thing is shoehorned into this biomedical dead end?

    My opinion on the matter is that in order to fight for our kids, and future generations of autistics – some of whom may well be our relatives – we need to stand up to the growing hysteria regarding mercury and autism. We can’t let anyone, whether they’re parents or not, remove the impetus on researching interventions that will help.

    “If we’re going to spend the precious time we’re not with our children doing something, it should be advocating for a more accepting society.”

    That, I agree, is a very important thing to do. I share your misgivings re: the nature of society but I’m not yet cynical enough to give up. I do think though I’ll be making a few more posts on this issue in the future.

  10. Bonnie Ventura July 28, 2005 at 16:43 #

    Kev, I hate to put it so bluntly, but if all of the current autism research were to be shoehorned into a biomedical dead end, I would be jumping for joy. Right now, much of the funding goes toward genetic research to develop a prenatal test. If that research isn’t stopped in the next few years, or if social attitudes aren’t radically changed, there won’t be any future generations of autistics.

    I agree with you that the impetus ought to be toward research into helpful therapies, but that’s not where the money from groups like NAAR and CAN is going.

  11. Kev July 28, 2005 at 17:09 #

    Bonnie I know what you mean and you know I agree – I’m very suspicious of a genetic test and what it means – but this drive towards the politicisation of mercury as a ’cause’ will, I’ve no doubt, have serious implications on intervention based research .

    Ian: further to my comments above you might want to have a read of this. http://neurodiversity.com/weblog/article/15/st-paul-saga

  12. Jim Laidler July 28, 2005 at 22:04 #

    I have long been suspicious of anyone who claims to have a genetic test for autism – or even to have found “the autism gene”. Autism is too varied and variable to be either a single-gene disorder or, perhaps, even a single disorder at all.

    To give you some idea of the magnitude of the problem of developing a genetic test for autism (prenatal or otherwise), I refer you to the following paper:

    Yonan, et al. “A Genomewide Screen of 345 Families for Autism-Susceptibility Loci” (Am. J. Hum. Genet., 73:886-897, 2003 – http://www.journals.uchicago.edu/AJHG/journal/issues/v73n4/40053/40053.html )

    In this study, they found that a screen of 345 families for potentially autism-related genes netted “hits” on chromosomes 1, 2, 3, 4, 5, 6, 7, 10, 11, 17, 19 and X (12 out of 24 – counting X and Y as separate chromosomes). The biggest hit was on chromosome 17, which has long been thought to be an autism “hotspot”, but there were families that did not show a connection to chromosome 17. So, I wouldn’t worry too much yet about a genetic test for autism.

    What might come out of all this genetic study is a better understanding of how many disorders make up the entity we call “autism” and what it is that causes the abnormalities seen. That alone would be more than enough to justify the effort and expense.

    Jim Laidler

  13. Ian July 29, 2005 at 04:01 #

    Jim

    I agree with you that the chances of an “autism” gene being found are low. I would state the probability to be 0. The reason I say this is that it’s clear from every study so far that it’s not one gene. I have no fears, which I believe Bonnie was expressing, that they’ll develop such a test and that’ll somehow lead to everyone aborting children who fail the test.

    I’ve had various genetic tests run on my kids. I know their SNPs and their biochemistry lab results agree with what I would expect to see. Patching around some of these SNP’s is possible using supplements, and leads to positive effects, measurable at a biochemical level. However, these treatments won’t cure them of autism: but they’ll certainly correct imbalances in the metabolics which are unhealthy (they had ridiculous levels of ammonia and very low glutathione levels, and had serious imbalances in their neurotransmittters).

    I think the research from CAN and NAAR will just add to the daily growing list of studies, showing a strong genetic basis to many (all?) disorders and diseases. These genetic “defects” are not though as the general public generally perceives them (i.e. a gene is missing and nothing can be done), but are to do with the way a gene is expressed and leads to an increase/decrease in efficiency to convert a molecule to a different molecule.

    I think more careful screening and segmentation of the autistic children in these studies, might lead to a better understanding of the range of symptoms that are lumped together as autism. The analogy for me is looking for a gentic basis for “bad back”, “dodgy stomach” syndrome, or just cold/flu. If you screened 100 people who all had a “cold” I’m sure their lab results would be completely different and you could assign several different hypotheses to their underlying problem.

    This is a fundamental point. What the genticists are doing is what in computer science would be called undirected data mining. I’ve not seen any study yet that tried to do directed or knowledge-based data mining, i.e. come up with a hypothesis about autism at a biochemical level (say poor methylation), identify which genes are involved in this (there may be several) and look tos ee whether combinations of SNPs are more prevalent in the autistic group than the control group. I thought I read that Jill James was going to attempt something like this with a few of her SNP hypotheses (I think MTFHR and possibly NOS/CBS combo) and see what the results are.It’s frustrating to see so much money being spent on genetic research that isn’t informed by some well known biochemical observations. Undirected data mining is a valid technique in a completely new domain, where you have no understanding of the underlying model of the system behaviour. I believe we have at least a few insights for autism.

    Ian

  14. Bonnie Ventura July 29, 2005 at 14:51 #

    No doubt there are multiple genes involved in autism, but that doesn’t preclude a genetic test. Let’s suppose there are 50 genes identified as autism-related, and someone does a study showing that most people diagnosed with autistic spectrum conditions have at least 20 of them. That could easily be used as a prenatal test.

    X number of autism-linked genes = recommended abortion.

    Dr. Joseph Buxbaum of the Autism Genome Project was quoted earlier this year as saying that the identification of 10 significant autism-related genes would be adequate for a prenatal test and that it could happen within the decade:

    http://www.msnbc.msn.com/id/7013251

    Would such a test be completely accurate? No, of course not, but with today’s extreme level of mass hysteria about autism, it wouldn’t have to be.

  15. Jim Laidler July 29, 2005 at 22:49 #

    Not to belabor the topic of genetics, but with most of the human genome not coding for proteins, there is a lot of it that is open for regulatory RNA. This is not the sort of thing one can “work around” with a “supplement” or other such stuff.

    As an example, the gene for Angelman’s Syndrome does not code for a protein, yet abnormalities in this region cause a severe neurological disorder (if it’s on the maternal chromosome – on the paternal chromosome, it causes a completely different problem). So, finding an abnormal gene or SNP will not necessarily lead to a treatment.

    SNP’s (single nucleotide polymorphisms) do not always cause a change in amino acid sequence – and those that do, do not always cause a change in function. This is a good thing, since changes in protein function are usually lethal. For this reason, the utility of tracing SNP’s – except in paternity and evolution studies – is very low. Even knowing that there is a SNP in a gene does not necessarily mean that there is a problem with that gene’s product. And there are thousands of SNP’s in every person’s genome.

    The main reason for the “undirected data mining” in human genomic research is the vast stretches of the human genome that have no known function – “no known function” being vastly different from “no function”. The biochemical pathways are well studied and haven’t been too promising so far, at least as far as autism is concerned. My money is on the regulatory sequences, which we have only barely begun to map.

    Finally, the idea of a genetic test showing X genes out of Y being associated with autism is a long way off – if it is even possible. My guess is that, by the time we get near that point, “autism” will no longer be a diagnosis, having been broken up into a myriad of different disorders with a common final pathology (or maybe not even a common pathology at all).

    I will leave you with some advice I got from a good friend – most of the things you worry about never happen, and most of the bad things that happen, you never worried about.

    Jim Laidler

  16. Diane Moore July 30, 2005 at 05:06 #

    I find it amazing that they have study 1200 pairs of identical twins and have not found a pattern of genes yet. I feel that some happens with the circuits of the neuron that does not allow them to connect. I have a son with Autism . If that have not found a gene or a set of now how long will take to develop some type of treatment to cure it.
    My son maybe in his 30 or 40 something, so what would his life be like then with have many years of limited learning. I
    feeel that more moneys should be give to the school systems to help educate children with Autism, all school are not created equal.
    Diane Moore

  17. Ian August 1, 2005 at 04:08 #

    Jim

    Sure, there are vast sections of the genome that have not been functionally assesed – I should know, since I happen to be lucky enough to work alongside people in the bleeding edge of all this research.

    Putting that to one side there’s a whole raft of protein/amino acid functional SNP’s that lead to neurodevelopmental problems, as you well know. Some of the more devasting amino acid ones have been studied, since, although rare, their effects marked, e.g. PKU as a cause of autism.

    However, more recent research, into things like MTFHR C677T variant, has show that, it’s not just a cardiovascular issue for adults –if you don’t beleive me see what the NIH has to say, in connection with neural tube defects (http://ghr.nlm.nih.gov/gene=mthfr).

    Obviously you can’t patch around every gene defect — only a complete idiot would think that, with our current level of science. However, there are things that we can learn today from the leading edge of science in neurological disorders, their markers and hypothesised interventions. I’m not sure whether you’re against genetic testing, but I’m all for it if it can lead to help for our our individual children. My view is — don’t throw out the baby with the bathwater! Yes, there are vast tracts of the geneome, who function is not known. Yes we’re only just beginning to understand the role RNA plays is much greater than we ever thought, but lets not give up hope. Nothing I do for my children will miraclously cure them (if only it were that simple!). However, I know, that if I do nothing; if I stop reading the literature on neurological issues, stop speaking to my colleagues who work in multi-discpilined teams trying to solve some of the most vexing issues in biochemistry; stop thinking about his behavioural interventions etc, then I’ve failed as a parent, since I happen to have the time and ability to do these things.

    Science in this area is improving rapidly. The science is not always well directed, but I want to know what the hypotheses of some of the best minds are, and I want to understand what the ramifications are for my child. I’m not some loon who thinks I can give my kid a supplement (or even a FDA approved drug, if there were one) and _everything_ will be hunky-dory. It’s hard and slow work, improvements are slow, but gratifying. I’m not sure where my kids are going, but I’m not going to sit by and let all the i’s to be dotted, and the t’s crossed in the science, until I act.

    Ian

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