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.”
My research on autistic identity and diagnosed/self-diagnosed adults was cited in a recent study on the motivations of adults who self-diagnose as autistic. Self-diagnosis is an important part of many autistic adults’ identity journeys. This is especially true with formal assessment is inaccessible, expensive, or shaped by diagnostic histories that excluded many groups. In their article, Stagg and Sobiechowski found that people are motivated to self-diagnose due to lack of access to formal autism assessments (costs, waitlists, etc) AND with encouragement from family and friends (and/or recognizing traits in themselves that are similar to other autistic family members or autistic celebrities). Nearly half of the participants wanted a formal diagnosis.
Why Many Autistic People Go Undiagnosed
There are many reasons why autistic adults may go undiagnosed. From the time that autism was first identified as a condition until now, the diagnosis has been modeled on young White boys based on the descriptions of Dr. Leo Kanner and Dr. Hans Asperger. Dr. Kanner described individuals from middle and higher socioeconomic status. These initial descriptions have created a circular problem for identifying people of other races/ethnicities, cultures, gender, and economic circumstances. The current diagnostic criteria may miss ways that autistic traits are expressed across these other groups, yet it is these criteria that is used to identify and study people from those groups. This means that people from these groups continue to be missed in early childhood. And many may receive misdiagnoses such as borderline personality disorder, bipolar disorder, and other conditions.
Self-Diagnosed Groups Struggle Too
My research on identity and self-diagnosed autistic adults found that they were more likely to be older, women, and employed than the diagnosed adults. However, they were less likely to be employed than non-autistic adults. Self-diagnosed adults were just as likely to struggle with stigma, self-esteem, physical and mental health, with quality of life related to daily life activities (productivity, relationships, life outlook). However, they were more likely to view the experience of being autistic as dependent of life contexts- possibly indicating a greater ability to engage in camouflaging or masking of their autistic traits in some environments or, conversely, an awareness of their traits being more or less acceptable across different contexts.
Physical Health Conditions Exacerbate Disability
Another reason that people go undiagnosed may be due to their physical health. The CDC found that over 80% of children diagnosed autistic by age 8 have one or more co-occurring health conditions. It is possible that autistic children with co-occurring health conditions are diagnosed at earlier ages due to the combined impact of both autism traits and symptoms of health conditions on cognition (attention, processing), social bandwidth, sensory experiences, and behavior such as emotion regulation. Possibly, as undiagnosed autistic people get older, they are more likely to experience co-occurring physical and mental health conditions which, combined with autistic traits, can be experienced as increasingly disabling without supports.
When Formal Diagnosis Still Matters
Many self-diagnosed people feel that getting an autism diagnosis would make a difference in their lives. In their article, Stagg and Sobiechowski point out that many self-diagnosed people feel that a diagnosis would help legitimize their requests for supports and accommodations at work, and other areas of their lives. At Spectrum for Life Counseling, I support clients seeking a diagnosis.
Self-Diagnosed Autistic Adults Deserve Validation
It is important to better understand self-diagnosed autistic people- who may go on to become late diagnosed adults. This is why I welcome and validate self-diagnosed adults in Spectrum for Life Research as well in my practice, Spectrum for Life Counseling. My research shows that self-diagnosed adults struggle with mental health, self-esteem, daily life productivity, and stigma. Self-diagnosed clients at Spectrum for Life Counseling describe ways that their natural ways of being are stigmatized at work and school, in relationships, and in families. This stigma creates barriers and limitations that make it difficult to manage conflicts as they are often scapegoated as having issues with maturity or character flaws instead of being recognized as experiencing and operating in the world in a different way. I like to point out that if everyone were autistic, then our standard ways of doing things would be quite different! I support self-diagnosed clients in formulating strategies including self-advocacy and conflict management to navigate barriers and challenges in their environment.
You can access the article by Stagg and Sobiechowski (2026) below:
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/
