Skip to content

ACN - 101321555 | ABN - 39101321555

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

AHRECS icon
  • Home
  • About Us
    • Consultants
    • Services
  • Previous Projects
  • Blog
  • Resources
  • Feeds
  • Contact Us
  • More
    • Request a Quote
    • Susbcribe to REM
    • Subscribe to VIP
Menu
  • Home
  • About Us
    • Consultants
    • Services
  • Previous Projects
  • Blog
  • Resources
  • Feeds
  • Contact Us
  • More
    • Request a Quote
    • Susbcribe to REM
    • Subscribe to VIP
Exclude terms...
Aboriginal and Torres Strait Islander
AHRECS
Analysis
Animal ethics
Animal Ethics Committee
Animal handling
Animal housing
Animal Research Ethics
Animal Welfare
ANZCCART
Artificial Intelligence
Arts
Australia
Authorship
Belief
Beneficence
Big data
Big data
Biobank
Bioethics
Biomedical
Biospecimens
Breaches
Cartoon/Funny
Case studies
Clinical trial
Collaborative research
Conflicts of interest
Consent
Controversy/Scandal
Controversy/Scandal
Creative
Culture
Data management
Database
Dual-use
Essential Reading
Ethical review
Ethnography
Euthanasia
Evaluative practice/quality assurance
Even though i
First People
Fraud
Gender
Genetics
Get off Gary Play man of the dog
Good practice
Guidance
Honesty
HREC
Human research ethics
Humanities
Institutional responsibilities
International
Journal
Justice
Links
Media
Medical research
Merit and integrity
Methodology
Monitoring
New Zealand
News
Online research
Peer review
Performance
Primary materials
Principles
Privacy
Protection for participants
Psychology
Publication ethics
Questionable Publishers
Research ethics committees
Research integrity
Research Misconduct
Research results
Researcher responsibilities
Resources
Respect for persons
Sample paperwork
sd
se
Serious Adverse Event
Social Science
SoTL
Standards
Supervision
Training
Vulnerability
x
Young people
Exclude news

Sort by

Animal Ethics Biosafety Human Research Ethics Research Integrity

Research Ethics Monthly | ISSN 2206-2483

Why autism research needs more input from autistic people

Posted by saviorteam
in Human Research Ethics,Research Integrity
on April 27, 2020
0 Comments
Keywords Medical research,Methodology,Researcher responsibilities,Respect for persons,Vulnerable groups
Isolated AHRECS logo

Elle Loughran
Student, Trinity College Dublin
Elle Loughran is a Laidlaw scholar studying genetics at Trinity College Dublin in Ireland

This post first appeared in Spectrum, the leading site for autism research news.

I am a student and researcher studying evolutionary genetics, and I am autistic. I often come across papers on autism research, but unfortunately, reading them is rarely a positive experience.

Too much autism research fails to acknowledge autistics as people who can read and make valuable contributions to the field. Instead, it casts them as little more than passive study participants or recipients of treatment. This shortsightedness damages research and scientists’ ability to help autistic people.

Reading autism research as an autistic person can feel like being treated as an alien. For example, consider a 2019 paper that stated: “This finding reinforces other work which shows that autistic people can have, maintain, and value close romantic relationships and friendships.” Imagine how bizarre it would be to read that about yourself.

I do not mean to pick on that paper in particular, but on a research culture in which anyone would think that sort of statement needs to be made.

This sort of culture results in seeing top researchers throw around blatantly wrong and offensive ideas about my community. For an old but powerful example, British researcher Simon Baron-Cohen endorsed a quote that suggested autistic individuals experience people at dinner parties as “noisy skin bags” that are “draped over chairs.” In my view, the appropriate response to that is, “No, that is absolutely not how we experience anything. What the hell?” Of course, that would not be an appropriate academic reply.

I understand that even seemingly obvious things need to be examined and tested in science, but if someone were to suggest that the moon is made of cheese, I doubt researchers would insist on disproving it with a study. Yet somehow autistic people must be so strange and unknowable to researchers that they cannot dismiss equally implausible characterizations of us.

In fact, many autistic people are available to answer questions about how we see things. Many of us speak up and share our stories proactively. It can seem to us as if scientists are not listening.

Then there are papers that suggest society would rather fewer people like me existed — and not because they care about my suffering. Or those that survey the prospects of preventing autism, pointing out that these are “high priorities for researchers, parents, advocates, clinicians, and educators.” Why is there is no mention of autistic people on that list?

Integration barriers:

The opportunities for someone like me to correct the culture in autism research are limited.

Often when I see these things in the course of my work, I just sigh and ignore them. If I’m discussing a paper with my scientific peers, I do not want to bring up issues with the paper’s treatment of autism and be seen as an ideologue, research subject or object of pity rather than as a respected colleague.

Other people’s responses can also thwart meaningful exchange. Last summer, I ‘came out’ as autistic while in conversation with an autism researcher and several of her colleagues. The people in the group responded with something along the lines of,  “Oh, well, you’re not like other autistic people, so those points do not apply to them.”

If a person’s ability to converse with you makes you assume she is not like ‘real autistics,’ then your idea of autism is automatically going to be ‘people who can’t talk to me.’  You will have a flawed understanding of autism and may not be able to see autistic people as potential colleagues. This risks researchers perceiving autistic people purely as research subjects who do not talk back, have opinions or contribute to the process.

Autistic people are treasure troves of information on their own lives. By including more autistic voices in research, we as scientists could improve our ability to gather knowledge about the condition.

Given the flaws in prevailing theories of autistic psychology, I believe we should encourage more qualitative, open-ended research that seeks input from autistic people and establishes a firmer basis for future studies. We could also seek their help in prioritizing treatment targets. Likewise, if biomedical researchers are going to get funding for studying autism, they must make more of an effort to engage with the autistic community and their wishes.

Things are getting better, and many researchers are doing good work. But listening to autistic people could help them make faster progress. Autistic people are not aliens with whom scientists cannot communicate. We are right here. We are reading what you have to say, and that communication can go both ways.

This post may be cited as:

Loughran, E.  (27 April 2020) Why autism research needs more input from autistic people. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/why-autism-research-needs-more-input-from-autistic-people

Related reading

No related Posts found

Leave a Comment Cancel Reply

Your email address will not be published. Required fields are marked *

About the Corresponding Author

Admin

Sp-user Link
Facebook-f Twitter Linkedin-in Sp-mail User

About the blog

The senior consultants started AHRECS in 2007. We were looking for a way of responding to requests for advice on research ethics and integrity from the government, health and education sectors read more…

Comment rules

We decided to include comment functionality in the Blog because we want to encourage the Research Integrity and Human Research Ethics communities to contribute to public discourse about resourcing and improving practice. read more…

Related Links

Complaints against Research Ethics Monthly

Request a Takedown

Submission Guidelines

About the Research Ethics Monthly

About subscribing to the Research Ethics Monthly

A smiling group of multi-racial researchers

Random selected image from the AHRECS library. These were all purchased from iStockPhoto. These are images we use in our workshops and Dr Allen used in the GUREM.

Research Ethics Monthly Receive copies of the Research Ethics Monthly directly
by email. We will never spam you.

  • Enter the answer as a word
  • Hidden
    This field is hidden and only used for import to Mailchimp
  • This field is for validation purposes and should be left unchanged.
  • Home
  • Services
  • About Us
  • Contact Us
  • Home
  • Services
  • About Us
  • Contact Us
  • Company
  • Terms Of Use
  • Copyright
  • Privacy Policy
  • Company
  • Terms Of Use
  • Copyright
  • Privacy Policy
  • Site Map
  • Site Map

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Facebook-f Twitter Linkedin-in