Happy to see the Spectrum Pathways program (neurodiversity-based self-determination program) cited within the research literature!
“Given the uniqueness of the expression of self-determination in young adults with autism, tailored interventions are needed to address the specific support needs of this population. However, to the best of our knowledge, only four self determination programs targeting young adults with autism have been developed: the ACCESS Program (Oswald et al., 2018), the McGill Transition Support Program (Nadig et al., 2018), the Family-centered Transition program developed by Hagner et al. (2012), and the recent neurodiversity-based self-determination program by McDonald et al. (2023).”
…”Finally, McDonald et al.‘s (2023) program is based on neurodiversity theory and aims to support young adults with autism (ages 18–34) in developing self-determination through a combination of group and individual sessions, integrating peer coaching and conflict resolution strategies. Although efficacy data are not yet available, a pilot study reported good appropriateness, high acceptability and good feasibility among participants and coaches. None of these programs have been delivered in Spanish to date.”
…”Of these four programs, only the program by McDonald (2023) is based on the principles of the latest version of the self-determination framework, CAT (Shogren et al., 2015), despite the potential of this framework to guide programs that promote self-determination.”
Structural discrimination is discrimination that results from the policies, rules, institutional practices, funding priorities, decision-making systems, and built-in assumptions of organizations or systems. It does not require any person to intend harm. It occurs when those structures consistently disadvantage a protected or marginalized group.
That is the definition at the center of Chapter Four of When Autistic Kids Grow Up. When federal research policies and practices consistently block physical health research for autistic adults, this is not just a “gap,” a “barrier,” or a “lack of fit.” The word that fits is structural discrimination.
This is different from the everyday understanding of discrimination. Most people hear “discrimination” and think of individual bias: one person, or a group of people, intentionally treating another person unfairly because of who they are. That kind of discrimination is real. But structural discrimination is broader. It can happen even when individuals believe they are being neutral, because the harm comes from the system’s rules, incentives, exclusions, and routines.
That distinction matters because even researchers often do not recognize structural discrimination when they are participating in it. They may know what interpersonal discrimination looks like. They may know what explicit exclusion looks like. But when discrimination is built into “how things are done”—into funding priorities, institute boundaries, review practices, program officer guidance, and assumptions about what counts as fundable science—it can look ordinary, neutral, or bureaucratic.
That is exactly why the research paper Mind the NIH-Funding Gap: Structural Discrimination in Physical Health-Related Research for Cognitively Able Autistic Adults is so important. The paper describes how a collection of NIH policies and practices worked together to bar, reroute, discourage, or make nearly impossible physical health-related research for autistic adults—even though autistic adults face serious physical health disparities, reduced quality of life, and shorter lifespans.
The issue is not one single person saying, “We do not fund autistic adults.” The issue is a system: public-facing policies that appear broad, internal funding priorities that are much narrower, institute silos that leave autistic adults’ physical health outside anyone’s responsibility, program officer guidance that tells researchers their work does not “fit,” and review structures that reward certain kinds of autism research while leaving physical health disparities in autistic adults without a clear funding home.
Together, those policies and practices produce a predictable outcome: the research that autistic adults need most—research on treating, adapting care for, and improving physical health conditions—is blocked or neglected. The paper found that, among NIH-funded studies on physical health-disparity conditions in autistic adults, none focused on improving the relevant physical health condition through interventions, programs, or services for autistic adults.
That meets the definition of structural discrimination: negative outcomes for a marginalized group resulting from the policies and actions of institutions, even when those institutions claim to be neutral.
So the question is not whether these policies and practices were real—at least at the time the paper was published. No one is denying that they were real. The resistance is to the word discrimination. People are willing to describe the barriers, the gaps, the misalignment, the lack of fit, the underfunding, and the bureaucratic problem. But they do not want to say what it is.
We should say it clearly because naming discrimination matters.
If we call it a “gap,” we can treat it like an unfortunate accident. If we call it “complexity,” we can pretend no one is responsible. If we call it “fit,” we can keep sending researchers from one institute to another while autistic adults continue to live with untreated, understudied, and poorly accommodated physical health conditions.
But if we call it structural discrimination, we are forced to confront the truth: the system itself is producing harm. And when the system is producing harm, the system has to change.
This matters for autistic lives because physical health is not separate from quality of life. Pain, insomnia, gastrointestinal distress, diabetes, obesity, cardiovascular disease, access barriers, communication barriers, and inadequate treatment are not side issues. They shape whether autistic adults can work, rest, connect, participate, survive, and flourish.
Autistic adults do not need a research system that keeps studying how to reduce autism. They need a research system that studies how to reduce suffering, improve care, extend lives, and support autistic people as full human beings across the lifespan.
That is why Chapter Four matters. It is not just about NIH funding. It is about whether we are willing to name structural discrimination when we see it—and whether we are willing to change the structures that keep autistic adults from getting the physical health research, care, and support they deserve.
In this post, I am raising the alarm about structural discrimination in the very laws meant to protect people with disabilities.
I’m sharing the podcast link because I’m grateful this story is being discussed. There is one part of the experience that was not covered, and I completely understand why: it is legally complicated, and it could have distracted from the main point of the conversation.
That missing piece is this: structural discrimination can exist inside the very laws that are supposed to protect people from discrimination.
In my case, I was speaking up about disability discrimination connected to NIH grant practices while I was working at Vanderbilt University Medical Center. I was whistleblowing. But during the legal process, my lawyers identified a gap: the law did not treat my speech the same way it would have if I had been reporting discrimination covered by Title VII of the Civil Rights Act.
Title VII covers workplace discrimination based on race, color, religion, sex, and national origin. Disability is not covered under Title VII. Disability discrimination is addressed through different laws, including the Rehabilitation Act and the Americans with Disabilities Act (ADA).
That separation mattered. As it was explained to me, the Rehabilitation Act and the ADA did not create the same protection for my particular situation because the reporting crossed levels: I was raising concerns about a federal-level system while employed by a non-federal institution.
So even though I was speaking up about disability discrimination, my employer was able to argue that my speech was not legally protected in the way it would have been for other categories of discrimination. That is the part that still stops me in my tracks.
For my lawyers, the question was not only whether the retaliation happened. It was also whether there was a specific law that clearly protected the speech. In my situation, the answer appeared to be no. That is why this is not just a personal story. It is a structural problem.
People with disabilities should have the same whistleblower protections as other protected groups when they report discrimination. If the law leaves people unprotected because their disability-related whistleblowing crosses state, private, and federal systems, then Congress needs to fix that gap. I keep wondering how many people have spoken up about disability discrimination and then been silenced, pushed out, or punished because the law did not protect their speech.
That is the context I wanted to add to the podcast—not to criticize what was left out, but to help people understand one of the most complicated and disturbing parts of what happened.
The third chapter of When Autistic Kids Grow Up, the new 5-part podcast series from Brady Huggett at The Transmitter, is out now. Chapter 3, “Would there be data?,” gets to the heart of why I began this work—and why I refused to look away.
Autistic adults are suffering—and dying—from chronic physical health conditions at higher rates than the general public. Chronic illness does not stay in one corner of a person’s life. It affects work. Relationships. Mental health. Independence. Safety. Everything.
When the NIH has funding policies that block review and funding for research on the treatment of physical health conditions in autistic adults, I am going to call it what it is: structural discrimination.
I am not going to soften my words to make authority more comfortable. I am not going to make discriminatory practices and policies sound more acceptable than they are. Federal agencies cannot be allowed to structurally discriminate against people with disabilities—including autistic adults—and then expect the people harmed by those policies to speak gently about it.
I was willing to risk my job, my reputation, and my relationships because lives were at stake. This was not about my career. It was not about my feelings. If this had been merely a difference of opinion, I never would have put a career with stellar performance reviews on the line.
But what I discovered was not treated with the urgency it deserved. Instead, I was rejected and betrayed by people, systems, and organizations that did not want to “bite the hand that feeds.” The NIH is the largest funder of physical health research in the world and provides the lion’s share of funding for universities and research institutes. That power makes accountability even more important—not less.
What happened was heartbreaking. But I would do it all over again to save autistic lives. Listen to Chapter 3 of When Autistic Kids Grow Up from The Transmitter—and ask why autistic adults’ physical health has been treated as optional for so long.
Chapter 2 of When Autistic Kids Grow Up goes places many people would rather not look. I’m grateful to Brady Huggett for telling this story without flinching from the truth. This is a packed episode—psychedelics, homelessness, pool halls, the birth of my son, our road to his autism diagnosis, and my battle to get through higher education all live inside it. But I’m focusing this post on survival. I survived homelessness by building what I can only call a life of lies, and by learning a con to get into bars so I could play pool and stay alive. It is not a glamorous story. It is a story about improvisation, risk, and what survival can demand from a person when there are no safe options left.
I understand that social media sites repress content that takes readers away from the site- and this post will take you to the Transmitter which hosts the podcast. So, please feel free to repost to share with your audience and groups 😊 Click on the link below to start listening
I’m honored to be featured in When Autistic Kids Grow Up, a 5-part podcast series by Brady Huggett for The Transmitter.
Part one shares my early life story, and one of the things I love most about it is hearing my father talk about homesteading in Alaska before and just after I was born. This chapter explores my family’s humble beginnings and my difficult childhood as an undiagnosed autistic child in an undiagnosed autistic family navigating severe socioeconomic and interpersonal challenges.
The full series centers on my research paper, Mind the NIH Funding Gap: Structural discrimination in physical health-related research for cognitively able autistic adults.
I’m grateful for the chance to tell this story and to help bring attention to the inequities autistic adults continue to face in research and healthcare. Click the title below to listen!
I’m honored to be featured in When Autistic Kids Grow Up, a 5-part podcast series by Brady Huggett for The Transmitter.
Part one shares my early life story, and one of the things I love most about it is hearing my father talk about homesteading in Alaska before and just after I was born. This chapter explores my family’s humble beginnings and my difficult childhood as an undiagnosed autistic child in an undiagnosed autistic family navigating severe socioeconomic and interpersonal challenges.
The full series centers on my research paper, Mind the NIH Funding Gap: Structural discrimination in physical health-related research for cognitively able autistic adults.
I’m grateful for the chance to tell this story and to help bring attention to the inequities autistic adults continue to face in research and healthcare.
The Transmitter, a leading neuroscience news provider, has released a five part podcast series about my and Audrey Scudder’s research focused on disparities in NIH funding patterns.
What is being said about Autism is Atrocious and False.
Autistic people work, they go on dates, they play sports, they write poetry. To say autistic people do not do these things is like saying humans do not do these things. Not all humans do all of these things; neither do all autistic people.
Autistic people do not ruin families. This is horrible hate speech about autistic people that does not represent the views of autistic people. It needs to stop.
When people talk about autistic people who have co-occurring conditions such as intellectual disability, genetic conditions (e.g., fragile X, 2211q.2, etc), health conditions, trauma, and other situations, they are talking about autistic people who can have profound needs. They can be sensitive to environments that are actually harmful to everyone, but affect them first and more deeply. These sensitivities often represent co-occurring conditions such as Ehlers Danlos, mast cell activation, and more. These are complex cases where the co-occurring condition intersects with autism making daily life extremely difficult. Autistic people can go decades before co-occurring conditions are detected and identified- in large part due to discriminatory health care systems and attitudes (like what we are hearing a lot of these days). Using autistic people with co-occurring conditions to viciously malign autistic people is cruel to all autistic people, including those with co-occurring conditions.
Autistic people can struggle with being accepted for who they are. They can be misunderstood. They are often bullied by others who fail to understand what autism is and who autistic people are. Instead of saying vicious things about autistic people, start by learning about them.
It does not save anyone money to burn research already published. It wastes money. And worse- it wastes literal lives. On that note…
I am PROUD to report that that the Gov’t took down the archived recording of our invited Presentation hosted by the Autism Intervention Research Network-Physical Health at UCLA on our research that revealed discrimination in NIH funding patterns. This research shows that the NIH had never funded a single study on the treatment of co-occurring physical health conditions in autistic adults. These are health conditions that make autistic people sicker and more likely to die earlier than non-autistic people. In this case, Discrimination = Death.
My talk was removed along with a select group of others that referred to “discrimination,” “minority,” “race,” “gender,” or “LGBTQ.” I am PROUD to be on the right side of history on this. This is the 2nd time the Gov’t took down this talk- both times for ridiculous reasons. This is research that provides DATA on discriminatory funding patterns. It is already published. Taking down the talk COSTS money- it doesn’t save it.
If you want to see where the talk was taken down- “Due to recent Presidential Executive Orders, certain content has been removed under the direction of our federal partners. If there is a particular activity that you are seeking, please email us at airp@mednet.ucla.edu.”: https://airpnetwork.ucla.edu/
I am Dr. T. A. Meridian McDonald, the principal investigator of Spectrum for Life (S4L) and a member affiliate of the Frist Center for Autism and Innovation. I have been an innovative neurodiversity-affirming researcher since 2005. I have expanded my career to practice as a licensed professional counseling. I received the honor of designing and earning my one-of-a-kind, interdisciplinary PHD focused primary on autism. I have two Masters degrees (Developmental Psychology, Counseling Psychology). I also completed the Leadership in Education for Neurodevelopmental Disorders programs (General and Advanced Leadership). To learn more about my extensive education and training experiences, please visit www.tamcdonald.org.
Bio Background: I am a multiracial, multiply-neurodivergent (autism; production dyslexia, dyscalculia, dysphasia; etc) and disabled (e.g., Ehlers Danlos, autoimmune, etc), queer, first-generation college graduate/academic from a multiplex family (multiple autistic family members). Both of my parents are multiracial, neurodivergent, and disabled and my mother was an undocumented immigrant. I experienced poverty (personal and intergenerational), housing and education insecurity, trauma, and other ACES in childhood. I exited the K-12 education system before completing 9th grade, and experienced homelessness for several years before and after attaining my GED at age 20. I raised my multiply neurodivergent and disabled son as a single parent. These direct experiences informed by training experiences and my research. More about my bio and path toward becoming a PhD, researcher, and therapist can be found here: https://www.cccco.edu/About-Us/News-and-Media/California-Community-Colleges-Outlook-Newsletter/citrus-college-autism-researcher.
I started Spectrum for Life because
Neurodiversity-Affirming Research is woefully underfunded in the United States. From its inception, Spectrum for Life (S4L) focuses entirely on factors related to Autistic Flourishing. These factors include a neurodiversity-affirming unifying theory of autism (BAPCO-DMAP) to better understand autism; Autistic self-determination; Autistic identity; co-occurring conditions and circumstances; discrimination and more. Scroll down the home page at spectrumforlife.com for more information about research at S4L.
Over time, I was able to gain greater independence of my Lab- eventually creating the independent Spectrum for Life Organization. This was important to me since working within other organizations created pressure to engage in or promote research that is non-affirming or even eugenics-related. There was also pressure to forgo neurodiversity-affirming research due to lack of funding sources. Researchers are encouraged to “chase the money” which is problematic when funding agencies prioritize non-affirming research. These pressures went against my personal and professional ethics.
Spectrum for Life directly collaborates with other neurodivergent researchers and students as well as allies. I work with established researchers as well as undergraduates and graduate students from a wide range of institutions. I also work with passionate people outside of academia when there is mutual interest. Feel free to contact me at: https://spectrumforlife.wordpress.com/contact-s4l/
Spectrum for Life Research 