Interpreting autism, neurodiversity versus disorder
19/02/2007
Dear Editor
As an autistic person and active advocate of "neurodiversity" I am more than a little concerned with the spin being given in the press following the publication of the latest research into the genetics of autism.
From the scientific viewpoint I am aware that this is only one more in a recent string of possibles, and that research is nowhere near a positive genetic test.
From my viewpoint I am already feeling threatened, in the way that people with Down's syndrome are already threatened.
There has been so much negative and simply inaccurate publicity about autism that it has been hyped into a modern scourge like heart disease or cancer.
The fact that I am writing to you, that I am a post graduate student study at a leading University, and active at the highest levels in the largest organisation for autistic people in the UK shows that it is no such a thing.
Science fiction as usual has got there first, from Daniel Keyes story "Flowers for Algernon" through to Andrew Niccols movie "Gattica" and Elizabeth Moon's novel "Speed of Dark", the moral issues have been explored. Those very issues which the genetic scientists remote from the day to day experience of autism forget when they make their pronouncements about genetic screening and tailored drug treatments. It would be like a drug to cure homosexuality or left handedness, societies imposition on people who are different.
What is often also not realised when people like myself are responding to issues like this is that many of us were in our childhood a lot more "severe" than we appear now so the argument that high functioning and low functioning should be considered differently does not count for much amongst us, we will not be separated from solidarity with our less intellectual compatriots.
It concerns me that when the press responds to research such has been published in this journal, that the reaction of those researchers who are inevitably contacted by the press excludes the dark side of this research.
Science owes a responsibility to its subjects as Morton Anne Gernsbacher has recently written on our behalf in the APS Observer February 2000 Vol 20 number 2 that when we are so often talked about by the scientific establishment in terms that describe us as less than human the scientists should be brought to account.
Larry Arnold
Larry(at)larry-arnold.com
Comments
Larry Arnold said: "There has been so much negative and simply inaccurate publicity about autism that it has been hyped into a modern scourge like heart disease or cancer.
The fact that I am writing to you, that I am a post graduate student study at a leading University, and active at the highest levels in the largest organisation for autistic people in the UK shows that it is no such a thing."
Actually the fact that Mr. Arnold is writing to you and is a post graudate student at a leading university does not prove that autism is not, to use his words, " a modern scourge". The term Autism is used loosely in Mr. Arnold's post. The Autism Spectrum of Disorders consists of a range of disorders which includes high functioning persons like Mr. Arnold. It also includes people like my son who has Autism Disorder and is low functioning. My son lacks basic communication skills although he has developed some by way of Applied Behavior Analysis intervention. My son also engages in seriously self injurious behavior on occasion and behavior dangerous to others such as grabbing me around the throat from behind while I am driving my car with our family in it.
For autistic persons such as my son Autism is a very serious and life limiting disability. There are many autistic people like my son, some living in mental health and adult residential care facilities. Some in penal institutions. If that is a "scourge" as Mr. Arnold says then yes autism for many lower functioning autistic persons is indeed a modern scourge.
I hope Mr. Arnold has an illustrious academic career. For my son we will continue to teach him basics of language and reading and how to care for himself and watch out for basic dangers of modern living such as automobile traffic.
Sincerely.
Harold L Doherty
Fredericton NB Canada
Posted by: Harold L Doherty | February 25, 2007 08:20 AM
Mr Doherty as ever continues to miss the point.
I am autistic, I do not doubt that there are differences in my neurology and behaviour that are apparent enough to those who really know and understand the full gamut of the disorder.
Where Mr Doherty severely errs in thinking that I dismiss his difficulties or his son's. That is simply not the case if he were to know the full extent of my involvement in the National Autistic Society of the UK and the many times I have spoken up to remind people that it is a wide spectrum.
It is simply a matter of perspective and sensationalising does not help the rational and well evidenced approach that needs to be taken to the education of autistic people.
My parents are no longer here but I am perfectly aware that they did not have an easy time bringing me up, however they did not know what they were dealing with, nor did my schools.
My trajectory was a good one, but I can tell you if I wanted to curse my fate I could. I don't enjoy the full fruits of this society, my abilities come at a cost. I know however, that I just have to do what I can, how I can, and put the past behind me.
Posted by: Larry Arnold | May 18, 2008 03:13 PM