In the realm of autism research, a disconcerting pattern emerges: autistic individuals are often treated more like subjects in a laboratory experiment than as intelligent contributors capable of shaping and conducting research. Our voices are rarely sought, and our active participation in studies is infrequent. This approach inadvertently pathologises autistic individuals, excluding us as if our perspectives hold no value. However, it is crucial to recognise that those most adept at expressing an authentic autistic viewpoint are we, the autistic community.
Imagine a parallel scenario in any other field of research: excluding the very group under study from shaping the discourse. Such exclusion would be deemed unacceptable, undermining the fundamental principles of rigorous inquiry and equitable representation. Therefore, it is imperative that researchers actively involve autistic individuals in research, recognising our unique insights and contributions as essential to advancing the understanding of autism and fostering a more inclusive scientific community.
To transform this exclusionary approach in autism research, researchers must actively embrace a more inclusive and collaborative model. Here are some essential steps:
- Autistic Representation: Involve autistic individuals at every stage of research, from conceptualisation to implementation. Our lived experiences provide invaluable insights that can shape research questions, methodologies, and outcomes.
- Co-Design Research: Adopt a co-design approach where autistic individuals collaborate with researchers. Together, we can identify relevant topics, design studies, and interpret findings. This ensures that research aligns with the needs and priorities of the autistic community.
- Community Engagement: Establish meaningful connections with autistic communities. Attend conferences, workshops, and support groups. Listen to our stories, concerns, and aspirations. Engage in dialogue to build trust and foster genuine partnerships.
- Accessible Communication: Use clear, jargon-free language in research materials. Provide accessible formats (such as visual aids or plain language summaries) to enhance understanding. Autistic individuals should be able to access and comprehend study information easily.
- Ethical Inclusion: Prioritize ethical considerations. Obtain informed consent, respect autonomy, and protect privacy. Ensure that research protocols are respectful and considerate of individual differences.
- Diverse Research Teams: Assemble interdisciplinary teams that include autistic researchers, clinicians, educators, and advocates. Diverse perspectives enrich research and challenge biases.
- Dissemination and Advocacy: Disseminate research findings in formats accessible to the autistic community. Collaborate with advocacy organizations to amplify voices and advocate for policy changes based on evidence.
- Challenge Stereotypes: Address stereotypes and misconceptions about autism. Research should highlight strengths, resilience, and diverse abilities rather than perpetuating deficit-based narratives.
- Funding Priorities: Allocate research funding to projects that actively involve autistic individuals. Support initiatives that empower self-advocacy and community-driven research.
- Shift Paradigms: Recognize that autistic individuals are experts in their own lives. Their contributions are not just valuable; they are essential for advancing knowledge and promoting inclusivity.
By embracing these principles, researchers can create a research landscape that celebrates neurodiversity, respects autonomy, and fosters meaningful collaboration.
Another Spectrum 
4 Apr, 2024 at 5:12 pm
I very much agree with you Barry. The points are well made. Hugs
4 Apr, 2024 at 10:35 pm
Thank you for your support.
Please go easy on the hugs as I find them very unpleasant – even in virtual form 🙏
4 Apr, 2024 at 10:36 pm
Sorry my friend, old habits die hard.
4 Apr, 2024 at 10:37 pm
👍
5 Apr, 2024 at 3:48 am
I didn’t know this, Barry. How can proper research be done if the very subjects of that research are not included? I certainly hope that changes – soon. Hugs.
7 Apr, 2024 at 11:22 pm
Change in attitude doesn’t happen quickly. One only need look at how slowly attitudes changed towards the acceptance of homosexuality commencing in the 1960s and still a “work in progress”. Other rainbow communities lag further behind. Attitudes towards autism today are probably at the same place as attitudes towards homosexuality were in the 1960s, so there’s a long way to go. I’m 74 and I don’t expect to see significant changes in my lifetime, but I hope my efforts will contribute to future changes.
And a special request: please take it easy on the hugs. I find hugs extremely unpleasant, even virtual hugs. 🙏 🙇
10 Apr, 2024 at 12:28 am
Ah, I forgot about the hugs issue. So sorry.
10 Apr, 2024 at 12:30 am
👍🙏
5 Apr, 2024 at 9:42 am
Great ideas, Barry.
6 Apr, 2024 at 7:52 am
Hi Barry. Not hijack or divert your post, but everything you posted was the timeline of change when the change in the DSM about homosexuality as I understand the timeline. For people like me, it took people willing to publicly argue with their credentials for the line to change things.
I just don’t know what will cause the same shift for you and autistic people except … What you taught me. Please give me a second to get a bit rude.
Before I encountered you online I used the phrase people with autism. You asked me a question. Do we refer to gay people as people with gay?
Wow, Barry! Did that open my eyes. Sorry, but this was a subject I did not know much about, but I was just starting to learn. I learned a lot from you.
Autistic people in my mind went from people with a disability to people born different like the LGBTQ+ people are. I now want to understand them as individual persons, not people who have a defect in their mind. There was a time when being like me, gay, was called a mental illness needing to be corrected. So I understand your issue and drive to change the narrative / idea behind that. Autistic people are not mentally ill and do not need to be fixed or changed. By my dogs that love gravy, I just googled autistic people. Most people wouldn’t have any idea of the number of famous people that came back in my search.
Anyway I just wanted to give you my thoughts, not hijack your post. The only thing I really want to add is this. Thank you so very much for opening my eyes on this subject. And for being willing to talk openly on my blog so others can also change their prejudices. Best Wishes. Scottie
6 Apr, 2024 at 5:13 pm
Your comment is absolutely on topic as far as I’m concerned.
I can recall the 1960s when gays were demonised and homosexuality was viewed as a mental disorder and criminalised, Much of the abuse I received as a teenager was because of my lack sexual and/or romantic interest in girls but I had a few platonic relationships with girls my own age. In the eyes of my peers (and some adults including teachers) that made me either a “queer” or a “queen” (terms used at that time to describe gays and trans). Both were “fair game” back then. When coupled with my social awkwardness I tended to stand out irrespective of how hard I tried to be inconspicuous. So perhaps I was made more aware of what LGBT people of the day went through than most people did.
Being gay remained a disorder in NZ until 1972 when the New Zealand and Australian psychiatrists’ professional body declassified it (a few months before the same happened in America). But it wasn’t until 1984 that homosexual acts were decriminalised. That meant the gay couples gained the same partnership property rights as heterosexual couples whether legally married or in de facto (common law) marriages. But it took until 2005 for same sex relationships could be ratified by a civil union and until 2013 for same sex marriages became legal.
Given that the NZ Parliament has almost double the number of LGBTQIA+ people compared to the general population, I think we’ve made massive strides, And of course here you can self identify as one of three genders, have all your documentation altered accordingly, and you are not restricted in how many times you can change gender.
Scottie, I think all people who belong to a minority or disadvantaged group (regardless of the nature of the minority or disadvantage) face similar battles for acceptance and recognition of their validity. Some groups are further along the road to equality than others, but we need to help each other if true equality is ever to be achieved. Until we are all equal and free, none of us are truly equal and free 🙏
🙇🏼
7 Apr, 2024 at 9:28 am
Hi Barry. Thank you. I appreciate the information. I can only hope autistic people get the same advancement far faster. People born different from the normal accepted versions are not always bad, broken, “evil”. Yes there are broken people, but autistic people are not one of the broken people. Best Wishes. Scottie
7 Apr, 2024 at 9:19 am
As I was reading your carefully thought-out, clear essay, Barry, it seemed so familiar. I follow a woman blogger who was diagnosed with metastatic breast cancer when she was in her late thirties and had two toddlers. She has become a strong patient advocate and is now invited to speak at medical conferences and participate in research design.
I think your final point to Scottie is on target. Women and people of color have been routinely overlooked in research as well. Changes have begun, and yes—we must all push together to speed the pace. The jargon term is intersectionality, but it’s simply recognition of our shared humanity.