Friday, 19 October 2012

Call for Papers "Cure or curiosity, what drives autism research?"

Please distribute widely

1st Call for Papers

This is the first call for papers for “Autonomy” The critical Journal of Interdisciplinary Autism Studies, published through the Open Journals System, by the Autreach Press.

We are an open access peer reviewed journal, with the aim of encouraging discourse between the different academic disciplines engaged in autism research, with the focus on being autistic led. We  therefore particularly welcome and encourage papers from autistic scholars who have not been published before.

We invite submissions, Academic Papers, Comment, and Reviews. (This includes reviews of all media including conferences)

The submissions process is on line but not exclusively, so we will also accept papers submitted by email, provided they are in a format that can be understood and edited. Alternative modes of submission will also be considered if this is an access issue, please contact the principal editor for further details

We do not set a house citation style, but do require citation and referencing.

Authors retain copyright but grant the journal a creative commons attribution 3 licence on any material submitted.

Further details can be found on

For any further queries please email the Principal Editor at

The deadline for the next issue is December 18th 2012

Laurence Arnold PGCert (SpEd) FRSA

Tuesday, 30 March 2010

Respecting the participants rights

Anecdotal evidence is the worst kind, but if I call these anecdotes "case studies" then maybe I will be excused.

This post came about after my recent sojourn at an Autism study weekend where I was privileged to run a workshop on Autistic culture and politics.

Anyway to the facts. I will not identify any particular studies by name, out of the same respect due to the researchers that they owe to participants (and also for other reasons that will become apparent)

Only one of these studies relates to autism, the other is mainstream 'disability studies' and the third a neurological study undertaken on the web.

Although this site has been concerned principally with what I have called the meta-ethics of social responsibility, studies nonetheless still owe that conventional ethical mark of not being injurious to their participants.

To begin with, the first study was a classic piece of qualitative research, which involved in depth interviews with a number of 'subjects' regarding their attitudes toward and personal experiences of disability and impairment.

I can honestly say I enjoyed this experience, even though I was recorded during what the researcher knew to be a stressful experience for me, just so that he could record the stress, it was still in the context of something I did every day, and it ended in this instance in the pub.

This researcher has been good enough to let his participants choose their own anonymous pseudonyms, and to provide them with details of the transcripts as he has written them up, checking with them whether they were happy for that detail to go into the research. Furthermore I enjoyed another more recent session in the pub with him, where he showed me more of his work. In this case I was quite happy not only with the way I was treated but with the eventual outcome of this research which will be to suggest alternative models of disability besides the social and the medical model.

The second piece of research was presented during one of the sessions at the Study weekend and concerned a similar piece of "ethnographic" research that I had just been participating in. I thought it appropriate, as this experience was still fresh in my mind to ask if the researcher had done any of the things with her participants, in terms of giving them the choice of pseudonym, letting them see and discuss the transcripts and involving them in the outcome of the research. She said that she had not. I thought after that session that never mind her intentions that she was treating the participants as grist to the academic mill. Interesting case studies to be reported and that was that. I have no doubt that in all other respects the research satisfied conventional ethical concerns as much as my own does.

The third piece of research has made me feel, as a participant seeing my contribution printed on a web site for all to see, as if I had been stripped naked and thrown into a crowded disco (I do know what that feels like because that happened to me once) I will not mention the site or the research because I don't want people to go and see all that, but this research that was conducted over the internet, not only has gathered together all my usenet postings on a certain topic (although they are under a pseudonym, it is nonetheless the actual name I signed the posting with and thus identifiable to many people) but that gathered together postings made on private medical fora where the researcher had obviously been lurking (indeed that is how I was recruited). Ok the first posts are available to anyone who can google, but the second set are only available to those signed on to the fora in question. The third level of transgression goes even higher, in that this same site contains all of the email correspondence between myself and the researcher which is essentially taking a medical history from me, as well as some private asides. I can't recall whether I gave him permission to use the correspondence in the research, I may have done, but I did not expect to find any of it any where else but in a journal or paper, certainly not for anyone to view on the internet.

In terms of what I personally gained from that errant piece of research I have to confess, I did gain a medical diagnosis and an explanation of a number of neurological symptoms I have had over a great many years and for which I had been searching for answers since my teens when I first became aware that they were not 'normal' and I do believe that the objective of this research in terms of meta-ethics is concerned with giving a more positive portrayal of that particular impairment much as the first piece of research is, and I don't suppose the conclusions of the two of them will be that far away from each other, even if one has been undertaken by a sociologist and the second a psychiatrist. But did the psychiatrist have to put every last detail of my "secret" history on the web?

All things to be considered by every researcher, and ending on a positive note. I have to say that I did hear a   a very good lecture on many of these ethical concerns during the study weekend so that I hope at least some autism researchers will pick up on this.

Saturday, 13 March 2010

A succinct statement of the campaign.

Firstly a little housekeeping, the title of the blog has been changed to prevent any misleading conclusions, as the concern for ethics is not confined to Europe or the Uk, but in reality where ever research into Autism and related phenomena is encountered.

Secondly an attempt to sum up the principal aims of the campaign and the facts behind it.

  1. Ethics should concern itself with more than just the participant researcher relationship.
  2. Ethical review bodies ought to be concerned with the applications and implications of the research.
  3. Research into the causation of Autism, genetic or otherwise has implications for the prevention of Autism.
  4. Prevention as current understood, involves genetic counselling.
  5. The current state of Autism research is such that no definite biological marker, or genetic component has yet been found which indicates a sufficiently significant risk of autism to justify either termination or the avoidance of pregnancy in any susceptible group.
  6. That despite of the current state of knowledge, genetic testing is being offered and decisions regarding fertility and embryo implantation are being made on the basis of an inaccurate understanding of the current state of knowledge.
  7. That such decisions and counselling is to be deplored on both ethical and scientific grounds.
  8. It is suggested that amongst the reasons for such a poor understanding are:
  • the paucity of science education amongst the lay public, which includes medical practitioners and administrators,
  • the misrepresentation of research findings in the popular media,
  • the failure of research institutions to take proper regard for the reporting of research when issuing press releases or granting interviews,
  • The failure of ethics review bodies to sufficiently inform researchers of the wider public obligations that arise from improper reporting of or application of research when issuing guidelines or providing ethical oversight.
Obviously everything is subject to revision and if anyone supporting the campaign can see any reason why those terms need to be altered, it can be openly discussed.

Sunday, 20 December 2009

Will Autism Speaks speak out?

I wish to draw attention to this article from Bionews from which I quote:

I had wanted to donate my eggs to a woman with fertility problems ever since having children of my own. I frequently tell my three children that I always wanted to be a mother and that every day they make my dreams come true. How wonderful it would be to help make someone else's dreams come true too.

Earlier this year, I approached the four hospitals offering fertility treatment within a 40 mile radius of where I live, explaining my family history. Three of them rejected me immediately. The fourth hospital invited me to attend an appointment with a counsellor, who recommended I be accepted. I was given another appointment to have the necessary extensive blood tests; the results were all fine. At a third appointment, I met a doctor who told me she had a couple in mind to match me with. Shortly after this, I received an email telling me the hospital had now decided they could no longer use my eggs.

There was one reason for all these rejections: my eleven-year-old daughter has Asperger syndrome (AS). She experiences difficulties with communication, social interaction and coordination. In addition, she suffers from panic attacks and her anxiety is at times debilitating. She's also a warm-hearted, thoughtful person and a gifted mathematician; in fact, she achieves above age expectancy in every academic area. Her sense of humour and understanding of language are developing apace; when I told her I'd been rejected as an egg donor, she asked me with a wry smile if that meant she was a bad egg. Only one other relation has an autism diagnosis, a young adult with AS in my extended family who is studying for a degree and holding down a job.

The National Autistic Society of the UK has responded thus:

The National Autistic Society (NAS) is aware of the experience of Helen Keeler who was turned down as a potential egg donor by four hospital fertility programmes, apparently as a result of having a child with autism.

A lot of parents, and people with autism, feel understandably upset by this decision. They argue that through their selection criteria, fertility clinics are imposing their own form of genetic selection, without any form of consultation with prospective recipients of the donor eggs. The issue opens up a whole area of ethical debate, and it is vital that those with the condition and their carers are directly involved in informing the direction of this important discussion.

Guidance from the Human Fertilisation and Embryology Authority (HFEA) recommends that donor eggs should not be accepted if a recipient or any child born as a result of treatment is “likely to experience serious physical, psychological or medical harm” or that they “cannot get enough further information to conclude there is no significant risk.” Many people affected by autism would challenge the implication that autism is a cause of serious harm to either the child or a parent. It is a lack of understanding and support which causes problems for individuals, not the autism itself.

Autism is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. While some may need a lifetime of specialist support, others are able to live relatively independent lives. Above all every person with autism has the potential – and should have the opportunity – to make a unique and valued contribution to society.

I would like to know how Autism Speaks in the US and the UK are going to respond.

I would also like to see a response from Autism in Mind and Research Autism.

This is your forum, go ahead: ........

Saturday, 10 October 2009

Autism Speaks Europe

Whatever perspective you come from the perspective is Autism. Autism as it is variously and sometimes controversially understood in our current time in the UK, Europe and the World beyond.

However you found this blog, wherever you come from with regard to the debates and controversies about Autism this is new, this is unique.

Welcome and watch this space.

I want this to be a happy space, I want people with very different opinions to post here, but I want respect above all.

I do not want scatology and cussing, save it for somewhere else, posting is monitored so overtly offensive posts (as against the merely controversial) will not get through.

The site is newly minted today (10 September 09) so there is a long way to go.

This site is neither affiliated with Autism Speaks US or Autism Speaks UK, it is a site where Autism can speak and be debated.