AASPIRE addresses adult autism research
Communication and partner training are key
Involving a disability community in research from its inception can help shape the research so that it's more successful and addresses the community's needs better.
It also can better protect subjects, making informed consent more understandable and the study more respectful of participants. But it requires flexibility on the part of both researchers and IRBs.
At the Academic Autistic Spectrum Partnership In Research and Education (AASPIRE), research partners include university investigators, adult autistic self-advocates and parents of autistic individuals as well as individuals who straddle those lines, says AASPIRE's co-director Christina Nicolaidis, MD, MPH, an associate professor of medicine at Oregon Health and Science University in Portland.
Nicolaidis notes that AASPIRE's co-director, Dora Raymaker, MS, is an autistic self-advocate and scientist.
"It's such an advantage to have somebody who understands the science as well as she does but who also is an active member of the community," Nicolaidis says.
Currently, Nicolaidis says, the research group focuses on adults with autism, in part because much of the autism research currently being conducted is geared toward children.
"What ends up happening is that with everything focused on children, there are great gaps when it comes to adults," she says.
Nicolaidis says many current autism studies look at what causes autism, rather than how to improve the lives of people, particularly adults, who live with it.
A 2011 report by the federal Interagency Autism Coordinating Committee bears this out. Out of $314 million in public and private autism research funding in 2009, only 3% focused on services to people with autism, and less than 1% focused on what the future holds for autistic adults.
"For the autistic self-advocacy community, their main interests are around 'How can our lives be better?' And only a tiny proportion of money goes toward that," Nicolaidis says. "From the community's perspective, they're frustrated that so much of the money is going to questions that they don't feel are particularly helpful.
"There's a real fear in the self-advocacy community that the ultimate goal of a lot of this research is to create a world that doesn't have autistic people in it," Nicolaidis says.
AASPIRE's work has focused on improving health care services to autistic adults, fostering social support through the use of the Internet and studying violence against people with developmental disabilities.
"If you start with the community from the beginning, it's going to shape different questions," Nicolaidis says.
Unique challenges
Nicolaidis has worked with a number of community-based groups in research projects, and says working with autistic adults poses many of the same challenges — achieving true informed consent, providing community partners with necessary human subjects protection training and helping them navigate the bureaucracy of institutional research.
However, autism does provide different wrinkles to those challenges.
For example, the solution many investigators and IRBs find for informed consent problems is to simplify the language by using less complex words and shortening sentences. However, this approach doesn't necessarily improve comprehension for autistic subjects, Nicolaidis says.
She points to an experience she had crafting survey materials for a subject group that included both autistic people and people with intellectual disabilities.
"As we simplify language and take away complicated sentence structure, that helps the people with intellectual disabilities understand the materials," she says. "But it actually makes it less accessible to many of our partners and participants on the autism spectrum. What they need is a lot of precision and specificity.
"If you take away a complicated word and substitute it with a very simple word, sometimes you take away that precision," Nicolaidis says. "If you turn a longer sentence into a shorter sentence, you've also taken away some of the details that they need."
She says her team addressed this problem in a computerized survey by using embedded hotlinks to allow subjects to click on a word for a better definition or for more detail. They used graphical representations (a cylinder filled to various levels) to illustrate concepts such as "some of the time" or "most of the time," which can be hard for some people to calibrate on their own.
When determining subjects' capacity to give consent for research, NIH guidance (http://grants.nih.gov/grants/policy/questionablecapacity.htm) notes that consent capacity varies depending not just on the subject but on the complexity of the study.
Nicolaidis says determining consent capacity for an autistic person is often complicated by communication difficulties.
"If we can be thoughtful about the best way to communicate information, then I think we have a greater chance of allowing people the opportunity to be able to make decisions for themselves," she says.
She notes that the OHSU IRB has been flexible about the template required for informed consent.
"Luckily, I work with a wonderful IRB," she says. "I know some IRBs are more hesitant to change their legal language, but my IRB has been extremely reasonable and understanding about the basic argument that you're going to get better informed consent if subjects understand what you're talking about."
Community training
Nicolaidis says one of the most time-consuming parts of conducting community-based research with autistic partners has been helping them navigate the IRB's bureaucracy. "I can't count the number of hours my research assistants have spent trying to support our community partners as they've figured out the whole electronic system, and taken the human compliance courses."
Because AASPIRE is a far-flung organization with partners around the world, much of this support has to be conducted via videoconferencing. The difficulty generally hasn't been in understanding the material, but in the executive functioning needed to carry out a number of different steps.
The partner must get an ID number for the institution's system, register with the electronic IRB system, attest to any conflicts of interest (which Nicolaidis says are usually non-existent) and sign up for online training, all on different websites.
"My research assistant is usually on Skype with them as they're trying to do the pieces, saying, 'OK now you have to click here, now you need to open this,'" she says.
Nicolaidis notes that this problem isn't unique to autistic community partners. She says the bureaucracy is built for academics who are used to moving in that world, and many different types of communities may find it daunting.
She frequently consults with the analysts and chair at OHSU's IRB to talk through projects before she ever submits them.
"There's a lot that ultimately needs to be flexible, having IRBs understand that CBPR has different constraints, that we're going to be putting a lot more modifications into a CBPR project as we're developing things with our partners," she says.
She says that as an IRB reviews a community-based project, particularly with autistic partners, it should be looking closely at the community partners.
"Have they involved any actual self-advocates?" she says. "A lot of projects will say they're working with communities, but the community is made up exclusively of family members."
Nicolaidis says the IRB should ensure that there's been an effort to make reasonable accommodations to allow people to participate in the study. Is the language accessible? She says some autistics are better able to communicate on a computer than in a face-to-face discussion.
"So many studies just assume incompetence and go to proxies," she says.
That approach is not always appropriate. Nicolaidis points to a study she conducted about violence against people with disabilities. Her group made a conscious effort to create an anonymous computer survey that allowed participants to complete it without the help of a proxy or even a research assistant, since the assistant would have been required by law to report any abuse uncovered by the survey.
And she says the framing of the study should reflect the community's concerns. Nicolaidis says many projects are based entirely on learning about autistic subjects' deficits — what they can't do — rather than looking at both deficits and strengths.
"I'm not saying that everything has to be strength-based, but when it's 100% deficit-based, all doom and gloom, that's ultimately hurtful," she says.
Involving a disability community in research from its inception can help shape the research so that it's more successful and addresses the community's needs better.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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