Intrinsic and Extrinsic Impairments.

Phil Schwarz post makes a really useful contribution to the discussion of my previous post about Problems Ahead.

I think that there needs to be more emphasis on the important distinction between *handicap* and *impairment*. That distinction allows us to examine — and mitigate — that part of disability that is socially constructed, via change in the society, while not losing count of the part of disability that is physical and intrinsic. On the contrary, keeping the distinction between handicap and impairment in mind allows us to better identify and mitigate impairment that is truly intrinsic and truly impairment, as such.

I recently watched a video of the recovered children on parade at the 2005 DAN! Conference in Long Beach. It was obvious to me from their manner and the way they talked to the host that some of these children were autistic. With the others it was impossible to tell. The parents were convinced that their children were “recovered” from autism. So were the audience. These children were better. But how much of it was the relief of extrinsic impairments?

My take on this is that these parents do not distinguish the extrinsic from the intrinsic. They see autism as an extrinsic thing – brought on by vaccines or allergies or some other environmental insult. They are not alert to the possibility that autism is intrinsic to their children and that the environmental events that impact on their children can be quite subtle. They are the sort of parents I had in mind when I wrote about ‘miracle cures’ in my book.

Children with Autism typically inhabit a world of chaos, our world. Their impaired ability to share in our common sense interpretation of experience leads them to impose their own uncommon sense of order and meaning. This can lead them to act in ways that are quite at odds with our ideas of appropriate behaviour. So we cajole, threaten, plead and generally respond in ways that add to their confusion and confirm them in their own version of reality. We seem quite mad and not to be trusted.

Then their Autism is recognized and we change. We follow more consistent programmes of behaviour management. We stop punishing them for non-compliance. We lose our sense of powerlessness and frustration. We think we know what is going on now and are calmer and more predictable. We may start them on a course of medication or a special diet or visit a therapist. We begin to lose our own guilt and anger and no longer project them subconsciously onto our offspring. And they improve. Surprise! Surprise! They may still be autistic but their autism is no longer so disabling and we are able to enjoy our children and teach them to enjoy us.

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8 thoughts on “Intrinsic and Extrinsic Impairments.

  1. Yes.

    It’s the same with ADHD. I am learning new skills that I need in order to be successful, but most of that is coming because I am learning to work WITH my disorder, instead of trying to OVERCOME the difficulties I have.

    “When I work with my ADHD, I don’t have to try harder. I find ways to use those ADHD traits and symptoms to get me through tasks that are necessary. I tend to hyperfocus on the computer, so I avoid using it when I am going to have to be somewhere at a certain time – and I freely use it to accomplish projects that I consider very important, like writing and research. Once I get started on any task, I remain “stuck” doing it until something attracts my attention elsewhere. So I use that momentum to get all kinds of things done. “

  2. My take on this is that these parents do not distinguish the extrinsic from the intrinsic. They see autism as an extrinsic thing – brought on by vaccines or allergies or some other environmental insult. They are not alert to the possibility that autism is intrinsic to their children and that the environmental events that impact on their children can be quite subtle.

    Great thoughts overall Mike. I think I agree with your passage above, but would add that it is also possible that some of these described parents may be alert to, but in denial (for varying reasons) of that intrinsic possibility – they are human. Simply not alert to that possibility would mean that such alertness could be fostered. In denial of that possibility shuts the door on such alertness.

  3. DoC
    I have no doubt that you are right about some parents. Mike Fitzpatrick is a GP and the author of MMR and Autism; what parents need to know. It is a hard hitting defence of vaccines. He is also a parent of anautistic son. In his book he describes it like this,

    “When we discovered that James was autistic we spent many months in a state of shock, grief, anxiety and anger – elements of all these emotions persist to this day. We can well understand how parents whose babies first manifested features of autism shortly after receving MMR could attribute a causal role to the vaccine. When you are in a state of distress at discovering your baby is autistic, you cling to any explanation on offer. However, although it may provide spome comfort tyo have something or somebody to blame, such emotional responses are unlikely to find the right target.”

    But if the anti vaccine brigade get to parents while they are in this vulnerable state it is easy to see how they can become true believers. Options and ABA work on the same psychological basis. They give emotional support, clear answers, something to do that promises recovery and wack a hefty price tag on it.

    I think it is worth asking why people are allowed to leave the consulting room clutching their diagnosis and very little else. If you feel abandoned by the system you will look outside and once you have bought into whichever cult finds you first, it will be very difficult to make you revise your opinions.

  4. I recently watched a video of the recovered children on parade at the 2005 DAN! Conference in Long Beach. It was obvious to me from their manner and the way they talked to the host that some of these children were autistic. With the others it was impossible to tell. The parents were convinced that their children were “recovered” from autism. So were the audience. These children were better. But how much of it was the relief of extrinsic impairments.Whenever the media trumpets another “breakthrough” in the treatment of Autism it adds to the pressure.

    They come across the wealth of anecdotal evidence that diets, vitamins and different drugs can help some children with some aspects of their condition. Of course, friends and relatives are always hearing about miracle cures and interventions. These are usually very expensive and only obtainable on the other side of the globe.
    I am one of those parents across the globe ,who watched the video on the 2005 DAN! conf. and believe me i am willing to pay anything through my nose to treat my son if i could “cure”him!!

  5. Pooja wrote
    I am one of those parents across the globe ,who watched the video on the 2005 DAN! conf. and believe me i am willing to pay anything through my nose to treat my son if i could “cure”him!!

    Pooja,
    the operative word is “if.” What I was trying to explain was that these children are still autistic. Something has changed. I believe that the most important change is in the parents. The children respond to the change in their parents. The parents change because they believe in the efficacy of the biomedical intervention even if this efficacy is bogus. What we are witnessing is a placebo effect by proxy.

    We did none of this biological intervention with my son. He was non-verbal. He was oppositional. He was destructive. Now he is embarking on a college degree course. He is still autistic.

    We need to discuss how in some contexts autism can be a devastating condition, while in others it can be an asset. I am talking about autism in the same person, my son. We worked hard to change the context of his life. He worked with a cognitive therapist to adjust to those changes in that context.

    Pooja, we need to discuss. Thank you for reading and contributing.

  6. Hi Mike
    In my personal opinion, for my son, autism can be both, intrinsic and extrinsic. Let me explain please. I think that there is a different genetics in him therefore this is intrinsic to him. In this sense he is autistic. But also there are a lot of comorbilities We have detected on him. Therefore these comorbilities are extrinsic.Because I think that these comorbilities are related to different biochemistry in him and the different impact of environmental insult on his overall systems, in this sense he has autism.
    Detecting properly and treating his comorbilities I can allow him to be the best autistic he can be. Because there is no clear research to clarify the role of comorbilities in the symptomatology, this is open to further research, besides genetics to other fields of epigenetics and environmental insult in children born biochemically different such as is the case of ASD chldren.
    You say
    The children respond to the change in their parents. The parents change because they believe in the efficacy of the biomedical intervention even if this efficacy is bogus. What we are witnessing is a placebo effect by proxy.

    Only if comorbilities are not detected or discarded after proper testing this can be considered for me. I do not think in the placebo effect by proxy or the developmental change per se as the only point, especially if you detect properly comorbilities and you see behavioral changes correlated with adequately treated and tested biochemical changes. Please understand me. I think they collaborate-development and placebo effects-, but it is no the overall picture, at least in several children with ASD.

    Thank you in advance
    María Luján

  7. Maria wrote
    I can allow him to be the best autistic he can be.

    I love that, Maria.

    I do not doubt that there are comorbidities for some autistic people. Luke Jackson is famously autistic and also following a gluten and casein free diet. He has written books about his autism and his diet. Similar conditions affect neurotypicals as well. We need research to establish

    a) The range of significant comorbidities
    b) whether or not these comorbidities are more common in the autistic population than in the NT population
    c)whether there is a causal relationship between any of these conditions and autism and whether they contribute to the autism or vice versa.

    DAN! assume that they have the answers already and see the proof in the recovered children. I have seen similar claims made for the power of prayer. Should I renounce my atheism or seek a more rational explanation for why prayer works?

    You finish by saying
    Only if comorbilities are not detected or discarded after proper testing this can be considered for me. I do not think in the placebo effect by proxy or the developmental change per se as the only point, especially if you detect properly comorbilities and you see behavioral changes correlated with adequately treated and tested biochemical changes. Please understand me. I think they collaborate-development and placebo effects-, but it is no the overall picture, at least in several children with ASD.

    I agree.

  8. Mike, thank you for your words.
    you say
    DAN! assume that they have the answers already and see the proof in the recovered children
    As you, I also think that the key problem is how many, but not all, DAN doctors present themselves and the approach as having all the answers. I think that we are only scratching with the science available the surface of what is diagnosed under the DSMIV.
    The other face is how mainstreamed doctors neglect to test for any because “all is the autism”. Having a very painful personal experience with my son, this is very wrong for me, because what is matters also is life quality of the autistic child, teen and adult and looking for comorbilities, testing adequately for right diagnosis and treating them properly can make life for them much more confortable .
    I also think that is different to think in what to search for comorbilities, into the general idea I presented you before. In order to be honest, I must say that DAN! books were very helpful to me not about where /how to test or some treatments, but about what to search for as comorbilities. In this sense and considering that for me efficiency and safety must be before all, I could make the best elections at the best of my knowledge.
    María Luján

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