A few flexible/possible observations followed by the main question:

Seems that the curbies like mass dx because it makes their precious children (and precious all children are!) "seem less different," and if they can other parents into their current maybe they feel they have more political strength,...or?

Seems that some (not all) autistics encourage mass dx by "social pressure" of not including "borderline divergent" people into certain groups of friends unless one is a declared autistic,... or?

Seems that many doctors are in favor of mass inclusion into AS dx's, thereby a hoped for resultant increase in tx's,...or?

Seems that big business (or should I say, largely "non-profits [lol]" and hopeful pharmaceuticals) are in favor of mass dx, also reflected in the increasingly wide inclusion (of what is AS) proposals for the DSM V,...or?

We can see potential or possible reasons (and be sure there's more) where each "group" might like to pull others into their mass dx current, but just because one more (and one more and one more) person gets a dx does not mean that person will automatically or permanently flow into one current or the other.  There are also issues of "increased numbers" vs. "resources" etc.  So...

Question:  
Does mass AS diagnosis help or hurt the neurodiversity movement, and if you've got an opinion on it why do you think as you do?
Thanks for your thoughts!


Edit for specifics of dx = AS

This post was last modified: 05-22-2010 04:44 PM by Jeanie.

AS = Autism Spectrum
(through the whole previous post)

I cannot foresee the future and I'm not sad about that.

Seems that many doctors are in favor of mass inclusion into AS dx's, theereeby a hoped for resultant sum in tx's,...or?

I feel a bit silly about replying to a post that I only noticed because of a spam-bump.

Diagnosis of people who are genuinely on the spectrum is not going to hurt our cause. Overdiagnosis, where diagnosis of AS is stretched to include people who are a bit geeky and shy or socially withdrawn, could be a problem.

hardly see where it matters, at least for adults who are DX`ed. You can get a more accurate reading on adults than you can with children, IMO

I know; it's a LOT more accurate with adults 90% or more of the time. Kids and adolescents change too fast in most cases. They should always have a confirmation diagnosis as adults.

My spine hurts every time someone writes 'curbies'.

I agree with (1/7)E6. Accurate diagnosis of individuals can only help our cause, while misdiagnosis could easily be harmful.

As one who is considering requesting an adult diagnosis I too have been pondering the vested interests of different parties.

Not sure if this site is american rather than uk geared - I am in the UK.
As such, if I were to receive a positive Dx I would have the term "learning disability" associated with my medical records for life. I already have enough of a problem in dealing with medical crises when they occur and am genuinely concerned that the diagnosis would serve to increase potential communication problems, given that general public perceptions (including those of many medics) are actually based on preconceived ideas that may have few if any links to the real experiences of any one individual. This problem (primarily one of stereotyping) is one that persists in many fields, and one that is particularly problematic in mental health fields (where, in my view, the diagnosis appears to be somewhat like a lottery, depending on the perceptions and presentation of case histories by patients (which can be very variable depending on mood and a host of other factors), individual perceptions and pre-existing biases of medics (and of their training and experiences) and which can result in a multitude of possible diagnoses. At the end of it all, I suspect that one may be little further on in terms of personal understanding and possibly damaged by the further imposition of biases imposed on one through the process of labelling.

That is the down side. The upside? I guess ratification by A.N. Other (with professional "cudos") that there are problems that can create difficulties in life and living. As such, the potential arises for increased personal acceptance and understanding.

So what ARE the other positives in real terms with regard to Aspergers or HFA? I guess the formal label allows acknowledgment of difficulties by others, if the dx is shared. (It also allows ammunition to be fired by others when a ready scapegoat is socially useful!)

I guess one of my possible motives for a diagnosis is that the "line" of non NT functioning runs through the family and is expressed in various ways by different individuals: speech and language difficulties in early life for some offspring, bi-polar for others, anxiety and depression for some, plus a goodly thread of dyslexia/dyspraxia and unusually high academic acheivements with international recognition for some. So WHAT ARE  we talking about when we try to associate with one or other of these conditions? What DO WE WANT at the end of it all? One of my reasons is to allow other family members - present and future - to consider whether, perhaps, they themselves might have similar or overlapping difficulties. A motive that may, possibly, help them to live more comfortably and acceptingly with who they really are, at baseline. It represents, perhaps, a "marker" to acknowledge individual differences and an opening up to the possibility that one might be able to love oneself - and be loveable - for who one really is, rather than for any attempts one may make to "fit in with", to "achieve" in ways that have direct comparisons with neurotypical goals and aspirations. (This latter goal, in my view, creates problems with self acceptance, and results in much of the anxt and anxiety that can often be present and which is recognised in statistics in co-morbidity). Thus, a diagnosis could, perhaps, be a "gift" for certain relatives (albeit a mixed one).

The concern about genetic research, the impetus towards "cure" are rejected on one level because there are potential societal benefits for some as a result of individual differences in intellectual functioning.  But this denies the enormous levels of emotional suffering and pain experienced by many of those who have such difficulties. Can one really accept such levels of pain - pain that drives some to destroy themselves - as positive, because that self same pain is precisely what drives some individuals towards remarkable discoveries?

Personally, if I had a magic pharmaceutical bullet that would allow me to function in a neurotypical way I am actually uncertain quite what I would do as it would effectively mean that I would no longer be quite the person that "I am". Equally, if I had the option of "cure" prior to procreation, I am honestly uncertain what my choices would be. To accept cure seems to deny the validity of many of the very positive attributes of those I love who are genetically linked to me. But to deny cure would be to prevent freedom from quite extreme levels of suffering - and how can one deny this to people that one cares about?

Personally, I still feel that the process of labelling is fraught with problems on many levels. I also suspect that in this field particularly that no one syndrome "is an island" - many muddy waters intervene. As someone who worked extensively in the dyslexia field, and who has seen an unprecedented number of case histories and assessment reports I come down strongly on a combination of genetics and in utero environment as causal factors, with a particularly strong emphasis on concerns relating to the endocrine system, pituitary and thyroid problems being at the foremost area of concern in possibly creating "stop/start" patterns of development in utero, affecting brain development in rather different ways depending on the stage of gestation that is impacted on by differential (and probably fluctuating) levels of maternal levels of pituitary and thyroid hormones. Small wonder that such differences would result in different symptomatology and individual characteristics.

I would almost certainly be concerned by antenatal screening tests with options to abort a foetus. I would almost certainly be unhappy with genetic screening (with abortion options) that failed to consider in utero factors. I would almost certainly be very happy to have good monitoring of endocrine function during pregnancy with a view (when causal factors are better understood) -to optimising such functions. But then - are we venturing into the realm of accepting biologicaaly engineered "extra bright kids"?

We are by now very clearly into the field of philosophy and ethics. Do we want to perpetuate individual variation and the gifts and difficulties that result? Do we want to alleviate suffering for a significant minority of people who would find integration into society much easier if they were in the majority in terms of brain function?

Hi, vicstuff, and welcome.  A long and interesting first post there.

I was struck particularly by your final paragraph as it raises some issues which were discussed in a Radio 4's The Ethics Committee programme which I listened to the other day on iplayer.  The ethical issue under discussion related to a woman in a wheelchair and whether she would be eligible for fertility treatment.  Ultimately it was agreed that she should receive reproductive assistance and that was on-going as the programme was made.

One member of the panel was also in a wheelchair with a condition similar to that of the woman whose situation was being discussed.  The woman who had requested fertility treatment was given the option of testing to determine whether any future child would have the same condition (there was a 50:50 chance of that) and she refused the test as she and her husband were happy to accept any child they managed to conceive, regardless of whether or not the child had a disability.  In the studio discussion the woman who used a wheelchair herself made the point that to select out disability was to reduce the variations of humanity and also implicitly devalued those, like her, who were themselves disabled.

It was a very interesting debate.

Great post vicstuff. You almost reach a conclusion that suffering is vital.

If it read that way it was not quite what I meant! In personal terms the sheer level of difficulties I have experienced - combined with the cost in terms of lost productivity - would be hard to justify, albeit that is may possibly be justified if pitted against the rather amazing achievements of certain relatives which have contributed considerably to medical advances that are now mainstream.

One of the problems with the neurodiversity concept is the very fact that as a society we are already intervening. Medical practise -with the very laudable aim of "do no harm" intervenes to help procreation without really understanding properly the implications in terms of quality of life of resulting children. Further medical advances ensure that a higher percentage of children who would have died actually survive. Such interventions, it could well be argued, potentially result in an increased survival rate of those who are genetically less well endowed to be productive individuals within society. The cost in both societal and individual terms is enormous. The longer term implications for humanity are probably incalculable. I hate expressing these views as almost inevitably they come across as nazi style suggestions of eliminating the undesirables or "weaker" elements of a society. It has, however, to be said that we are already, as a society, changing our "genetic stock" through such interventions.

I wish I could encourage medics to look more closely at factors that modify the expression of genetic endowment. I am quite convinced that the endocrine system is absolutely fundamental in this respect. I cannot understand quite why research is not more focussed here. Neither can I understand why even outside of conception and pregnancy the issues relating the thyroid function are not better evaluated and treated in the UK. (Compare treatment guidelines in the UK for hypothyroidism with those in the US and Denmark - and with research start to consider the collossal impact of appropriate treatments for many people - currently denied to many in the UK as a result of our guidelines.) When you then ADD ON the known links with thyroid problems in pregnancy, pre-eclampsia and the very old fashioned diagnosis of "cretinism" in infants - I have very real reasons for wishing that there was some way to facilitate research into this area.

As a further aside, I look at the enormous funding put into research, I sometimes wish that there were some way in which the public could "vote" to ensure that funding went into research areas that reflected public concerns.

It is, indeed, interesting. But the woman in the wheelchair who decided to accept any child they managed to conceive was simply saying that life of any kind has a real value and that a child of any type was more important than not having a child. All completely natural and understandable. She was not being given a real choice. The real choice would to be to ask her whether, if she conceives, she would like to ensure that the child either had, or did not have, a disability. Now that proposition, I think,  raises slightly different issues....

PS to last reply. I am reminded of those in the deaf community who (as far as I recall) express a very firm wish that any children that they conceive DO have the same disability - simply because they will then "fit into" their community. This relates specifically to the original posting in this thread - it is "as if" having been identified as having a certain disability one is then allowed entry to a societal group (from which "normals" [whatever they are - and I have doubts that there is such a thing]  would be excluded de facto). This again, is natural - we all feel more comfortable when grouped with others who are similar to us. But it says little for societal integration or mainstream acceptance of individual differences.