A new study, published in Society and Mental Health, highlights how the minority stress model can be used to explore the impacts of social stress on autism and mental health. As autism is primarily researched from a biomedical perspective, the social factors that may contribute to mental health issues in autistic people remain underexplored. The minority stress model explores how minority status, or belonging to a marginalized social group, contributes to discrepancies in mental and physical health between minority individuals and those who are a part of the majority population.
Using this model opens up exploration beyond the individual. It allows researchers to examine how social stressors like discrimination and internalized stigma impacted the mental health of the autism community. The authors, Monique Botha and David M. Frost write:
“Researchers hypothesize that decreased social standing leads to stigmatized minority groups’ being exposed to more stressful life situations, with simultaneously fewer resources to cope with these events.”
Rather than conceptualize autism as a variation human neurodiversity, dominant biomedical models search for clues as to the cause of autism in biology and look to develop biological cures. From this perspective, autistic people are perceived as victims, whose disability must be treated and removed. As mentioned, the social factors that negatively affect the lived experience of autistic people are ignored – as mental health issues such as depression are identified as within the individual, rather than caused by external factors.
Not surprisingly, understanding autism in this way results in dehumanizing treatment and research related to autism, such as labeling people as incapable of human connection, comparing them “less favorably with brain-damaged monkeys,” and prescribing children diagnosed with autism psychotropic drugs, which can have damaging, long-term side effects, more frequently than other children.
Yet, despite this emphasis on the biological, other research has indicated that brain science cannot distinguish between children diagnosed with autism, ADHD, or ‘typical’ children, suggesting that biomedical ways of understanding may fall short, opening up the possibility for psychosocial approaches, like the minority stress model, to step in. Further, research has indicated that psychotropic medications, such as Prozac, are not helpful for autistic children, which calls into question the use of psychotropic drugs with this population.
Such treatment and research have resulted in stigmatized views of autism by the general population, such as that autistic individuals are “loners.” This stigmatization, apart from painting a picture of autism that is stereotyped and inaccurate, carries with it an even more insidious side. The authors explain:
“Multiple studies have found a high risk for victimization in the HFA [high functioning autism] and AS [Asperger syndrome] community, including physical, verbal, and sexual victimization across the line span from childhood to adulthood.”
This stigmatization also follows autistic people into the workplace, as research has shown that they are more likely to experience workplace discrimination, and to be unfairly terminated from their jobs, be harassed at work, struggle to find employment, or be underemployed.
As one might imagine, being victimized and mistreated by the social world can lead individuals to develop a negative sense of self. We can see this clearly through higher rates of suicide, depression, post-traumatic stress disorder, premature death, and overall poorer mental health in autistic people versus those without autism.
Empowered by reclaiming their experiences, autistic people are increasingly considering autism as a crucial aspect of their identities, much like sexuality or race. Understanding autism in this way, not as a hindrance but as considered problematic to a world that has rigid conceptualizations of what it means to be “normal.”
From this perspective, autistic people are an identity-based minority who may experience social stress due to the stigmatized nature of their social status. It is here the authors introduce minority stress theory, which has been traditionally used to examine disparities in physical and mental health in minority populations, such as gender diverse individuals.
Mapping autism onto this model allows for an understanding of autism that is not a reductive, biological approach, but rather one that understands how social exclusion and inflexible conceptualizations of “normal” create disabilities. Further, this understanding of autism allows for social factors related to autism to be explored, which, as mentioned previously, has been discounted by biomedical accounts.
The researchers used online surveys, surveying 111 individuals, to examine how minority status and related stress affects mental health and well-being outcomes in individuals with outcomes. The researchers used online surveys to examine how minority stress is related to mental health and well-being outcomes in individuals with autism.
Participants were recruited from online groups such as Autistic Women’s Association, Wrong Planet, and Autism Worldwide, asking them about their experiences of victimization and discrimination, expecting rejection, concealing behaviors associated with autism (such as not disclosing their autism on job applications), well-being, and internalized stigma, among others. Individuals were not required to have a diagnosis – researchers accepted any individuals who identified as autistic, choosing to ensure to include individuals in the study who feel a part of the autistic community but have been unable to access a diagnosis due to monetary or personal reasons.
The results of the study suggest that participants experienced the added burden of minority stress, justifying understanding mental health in the autism community from a minority stress model lens. The authors write:
“Minority stressors such as victimization and discrimination, everyday discrimination, the expectation of rejection, outness, internalized stigma, and physical concealment of autism consistently predicted diminished well-being and heightened psychological distress.”
They argue that such stressors are potentially preventable. They also highlight how this research backs previous research that has suggested that minority stress negatively impacts mental and physical health, and cannot be reduced to general stress.
More specifically, the researchers found that everyday discrimination was highly associated with the expectation of rejection, meaning that each time the individual is discriminated against, their expectations that others will reject them increases.
They also found that “outness,” or disclosing to others their experience of autism, was also associated with lower well-being and higher psychological distress. This runs contrary to research studies on outness and sexual minorities, which suggests that being ‘out’ is beneficial for psychological well-being. The researchers hypothesize that perhaps disclosing autism to others opens them up more to discrimination or bullying from others.
Also, as 9 out of 10 stereotypes associated with autism are negative and derogatory, it makes sense that being ‘out’ would have a negative impact on the individual, as these stereotypes might become affixed to them – both by others, as well as internally.
Finally, the results of the study found that those with a formal autism diagnosis experienced higher distress than those without a formal diagnosis. Those with a formal diagnosis also reported higher expectations of rejection from others, which the researchers suggest might be reflective of the stigma associated with a formal diagnosis or the stress associated with having to hide this part of themselves from others.
A significant limitation of this study is that the measures that were used, although designed for use with minority populations in general, may not all translate to get at the unique experiences associated with autism. Further, the sample size consisted primarily of women, which may impact whether this study can be generalized across genders. Although the researchers controlled for gender in their analyses in an attempt to address this limitation, further research needs to be conducted with a more representative sample to offer a better understanding of how minority stress affects autistic people.
This study has major implications for research and clinical practice. It points to the minority stress model as one way of attending to the social context in autism research, and to examine how negative social factors may significantly, negatively impact autistic people. Using the minority stress model in psychological research allows for an opening up of exploration of autism that is not just focused on the individual, but includes the social context. This is important considering how the social context has been ignored in autism research.
The researchers provide the example of a study wherein, “. . . researchers investigating suicidal ideation in those on the spectrum found that three-quarters of their sample had suffered from bullying yet still attributed suicidal ideation to the characteristics of autism.”
Examining the negative social factors experienced by autistic people allows for an understanding of autism to emerge that does not label the individual as inherently defective, but preferably one that includes the lived experience of the individual and complexities of the social realm, and how these influence the individual’s well-being. Moreover, it also allows for further exploration regarding how these negative social factors can be prevented or mitigated, and therefore better attending to the mental health and well-being of autistic people.
Further, this study opens up doors for future research possibilities. The authors suggest that long-term research into how diagnostic labels play a role in discrimination and the expectation of rejection from others will allow for a more dynamic and nuanced understanding of these experiences. Among other recommendations, the researchers also suggest exploring resilience factors that could potentially prevent or reduce the adverse effects of minority stress.
Overall, exploring autism from a minority stress model perspective allows for understandings to emerge that are not grounded in dehumanizing, biomedical models. Instead, the lived experience of the individual is revered and attempted to be understood. This, in turn, could allow for more humanized ways of understanding mental health issues and autism, where the individual is humanized as worthy of dignity, care, and respect.
Botha, M., & Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by the autistic population. Society & Mental Health, 10(1), 20-34. (Link)
All of this assumes that “Autism” and “mental health” correspond to underlying medical realities. Newsflash: they don’t.
Medical in the sense of something which needs “fixing,” no.
But, physical in the sense of evolutionary divergence leading to a population with slightly different different needs and priorities? Perfectly scientifically plausible. Inevitable, really.
Disentangling those divergences (normal, natural, and adaptive in the right circumstances) from trauma (injurious and non-adaptive) is very important. That’s all this article is about.
I mean, you’re right– the CURRENT mainstream construct of autism, relying on harmful stereotypes and ascribing trauma traits as core components of an autistic person’s being, that’s a myth.
But there are people who call themselves autistic (I tentatively include myself in this category) who are reclaiming the term to mean something different.
Yes, but if something is real it needs to exit in the reality we all share–material reality–not just in the souls or minds of self-ID-ing individuals.
Just because a group of people decide to all use this word, “autism,” to describe themselves, doesn’t mean that it designates or maps onto any real “divergence” (evolutionary, biological, or otherwise). Some people like vanilla ice cream. If they were raised in a chocolate-supremacy society, which belived that vanilla was objectively bad-tasting, they might be pathologized as “vanilla-lovers.” Then, a few generation later, vanilla-enjoying people might choose to band together and “reclaim” the term, and try to say that being “vanilla-loving” isn’t a disease or disorder, but it IS an evolutionary divergence. But it isn’t. Some people like different things than others. Some people do things differently than others.
Diversity is a part of humanity and nature, but “evolutionary divergence” implies something more material than that. Or at the very least implies that to make the distinction between these two types of people is cutting nature “at the joint.” But it isn’t. There’s no evidence that it is.
That only works for mature people that have gained experience along the way, and ONLY works for that one person…. What psychiatry does with these labels is a different story.
I am neurodiverse. I tested myself against the norm, or at least against the people I have encountered throughout my life. Those that cope well in the positions they are in.
The only problem I have with the concept of “neurodiverse” is that it seems to imply or could be thought to imply that there is a “neuro-normal” that describes most people. I don’t think that is the case. I think we’re all “neurodiverse” to a large extent. Unfortunately, our society picks on certain “neurodiversities” and condemns them, which is pretty sad. But I do get that normalizing “different” presentations is a very sane thing to do, and I totally support that idea!
Even words such as “autism” carry a negative meaning. Psych ensured that. Everyone would be okay with being “different” if not for what psych did to those differences. Their mantra is that this way of being is not the preferred way. It is not the average or norm.
It all depends on if one fits into the average. All these words for people wind up being full blown discriminated against.
Even in families, everyone looks at that one person now, more so than ever. I know people that casually say “my son “has” or “is” “autistic”. And they get all their “insight” from psych. About the “disorders”, within this “divergence”.
They fondly chuckle about and “kindly” tolerate and make allowances for their son.
It makes me want to upchuck.
And don’t forget that if you are “neurodiverse” there are so many more labels we can buy on top of it. All those “disorders”
Obviously we are all “neurodiverse” or none are.
A shrink busy focusing on one subject, the subject of “observing” people, making a biz out of it, drugging people to hell and back, what is he? Is he not “divergent”?
He is well outnumbered, by the “average” and to boot, what he delivers is not something productive, or healthy for society.
There may be a way to conceptualize neurodiversity without falling into the trap that you describe, Steve. Think of the neurobehavioral space as a multidimensional represention of where people map on all the dimensions of their neurological functioning. Those who fall close to the average (say, plus or minus one standard deviation) along several core dimensions — such as preference for social contact, emotional processing style, sensory processing sensitivity — would be considered “neurotypical.” Those who fall towards the tails of the distributions on several core dimensions would be considered “neurodiverse.”
In this scheme, being neurotypical is just a description of one’s position within a central cluster in the space – it need not be a judgment of “normality” as some inherently better state. This conceptualization allows for a lot of variation in human behavior – even those in the neurotypical space could be outliers on a couple of dimensions (confirming your idea that “we’re all ‘neurodiverse’ to a large extent”). It also allows people to be neurodiverse without necessarily fitting into any of the currently defined labels that are considered neurodiverse – “autistic,” “ADHD,” “tourette’s,” etc.
I do like a spectrum approach to these discussions – it allows for variation without discrimination, and also includes the possibility that people who aren’t near the center of the graph can still have a lot to contribute that those closer to the “average” would not be able to provide. Ironically, every population biologist knows that diversity of phenotypes is the core of species survival – adaptation is only possible if there is a range of potential responses available within the species, and those who are too adapted to a particular niche are wiped out when change becomes necessary. As long as the concept doesn’t lump people into those who ARE and ARE NOT “neurodiverse,” I think it works, but we both know there are forces who can take any reframing and smash it back into two-valued “logic” for their own nefarious purposes!
Thanks for your thougts on this!
You would almost be right about the “spectrum,” except that the spectrum does not include normality. It isn’t a spectrum from normality to extremely disabling autism. It is a spectrum from mild autism to extremely disabling autism. What this means is that the idea of “The Spectrum” inherently DOES “lump people into those who ARE and ARE NOT “neurodiverse.”
In the real world of science, “spectrum” always denontes a continuous range from one extreme to another. As much as people are defined as “on the (autism) spectrum,” a real spectrum has no defined point of differentiation except at the extreme ends. If there is a spectrum involving people, then EVERYONE is on the spectrum somewhere. I know that’s not how the word is used by most people in this context, but scientifically/mathematically speaking, that’s the nature of a spectrum. It doesn’t suddenly stop at a certain arbitrary distance from “normal.” The recognition that there ARE spectra of human behavior and emotion that exist around any definable “norm” is a very good thing, but deleting the idea that there are people “ON” the spectrum and those “OFF” the spectrum is really not a sustainable concept.
The problem I have with the concept of “neurodiversity” is that it has never been proven, scientifically, that there is anything different or abnormal going on in the “autistic” person’s neurology. We see someone acting differently and ASSUME that this implicates their neurology. But that’s not science.
Psychiatry does the same thing, btw. They see people behaving in ways that are so “crazy” and “out there” that they believe this implicates their brains/brain chemistry. But, again, that’s not science.
I tend to agree. We don’t know in any case even whether it’s “neuro”, that the person is somehow neurologically different, nor do we know if that difference in a particular case is a result of any kind of abnormal disease process. There are probably some people “on the spectrum” who actually do have something physiologically wrong with them, but we don’t know what it is or how to differentiate those who really do have a physiological problem from those who simply act in ways that are unusual or that make some “normal” people unconfortable for some reason.
Removed at request of poster. Double post.
You know, I’m a little confused by this article and the responses.
I have a younger sibling who is “autistic”. He lives in a group home (as far as I know). I have a great deal of guilt about not having a relationship with him (I was oldest and thus did a good deal of caretaking). He is/was not able to verbalize properly (repeats phrases over and over), rocked back and forth, banged his head…I know there was a period of time where he would break windows…he used to pull his pants down when frustrated (often) and I now realize the poor guy likely has food sensitivities (as do I)…
IOW, he has *something* very very “wrong”with him…has been this way since his shots when he was a baby (I know I know). His memory is/was excellent…he loved music but would trip out on weird stuff like the garage door opening and closing, or one time he became hysterical because he couldn’t figure out a puppet turned inside out…so when I see folks here saying ‘autism’ doesn’t exist, or isn’t considered to be a disability, man that just hasn’t been my experience.
Please enlighten me folks.
furies, the issue isnt that your brother is not clearly an ‘outlier’, statistically speaking. The issue is that alleging that he has a specific disorder or condition called autism creates so many more links and assertions that there is no science behind. If your brother has autism, and my neighbor has autism, the idea alleged is that there is something they have in common that is the root cause of their difference. Unfortunately, though, there is no science whatsoever that can prove that.
You may think it is just “obvious” that there is a connection there, between two labeled-as-“autistic” kids, but there are many phenomenon in life where people exhibit similar “symptoms” and yet have radically different underlying causes. I can be short of breath from running a 50 meter sprint, or I can be short of breath from having asthma. I can hallucinate because I have been sleep deprived for 7 days in a row, or I can hallucinate because I took LSD. The truth is that labored breathing and hallucinations often cause people distress, and their families/communities distress. But that doesn’t mean that they are pathological processes. They are actually quite normal and part of the normal human suite of behaviors and experiences.
How would I describe him then?
Please don’t give me some woke PC stuff. I have met others who have displayed similar behaviors…how do you describe these folks? How are therapies invented for them if they don’t all have *something* in common?
I used to watch UCTV on the public access station; many lectures about the genetics of ‘autisim’ that apparently aren’s true at all. Labels involve power-over dynamics…but but but??
Milton Erickson used to say that therapy has to be reinvented anew for each client. I believe he was absolutely correct. Labels only distract from the fact that all people have unique needs and strengths and that nothing is going to work for everyone based on some external characteristics.
There are some educational techniques we can use with kids who have difficulty communicating, just like there are approaches that work better or worse for kids who are seeking lots of stimulation or don’t like to sit still. But these are adaptations to personalities and personal needs, not “diagnoses” of “disease states.” Any kind of “treatment” requires creativity and a willingness to communicate with the person you’re trying to help, verbally or non-verbally. The rest is all window dressing, or more often, marketing.
love this comment, steve! Yes, there is no one size fits all. Therapists with a lot of experience learn to apply active listening and communication with their patients, rather than trying to apply a single specific method, modality, or theory.
Great comments Steve and meremortal.
The problem with official labels is that they are interpreted by so many to mean different things. People start seeing the label and everytime the person “messes up”, it’s because they are “this”, or have “this”.
It really dehumanizes a person, and in the “professional” world also.
We really suck at being able to allow for diversity, and yet we think we are equipped with all the proper brain gear?
We don’t even know how to test ears or eyes in all their complexities and how those functions perceive the world.
How would you describe him? Why not simply describe HIM?
“My brother struggles with sensitivity to loud noises.”
“My brother is extremely interested in trains, traffic patterns, and traffic systems. It’s his obsession, his calling, and he’s really knowledgeable about them and good at designing them, too.”
IF “autism” was not assumed to be something one suffered FROM–asserted as a cause, a disease, a deficit, an organic or material cause in the brain–it could be purely descriptive. Pretend there is a word we can use that way. Let’s call it “beeplebopple.” There is no reason people cant see a pattern and call it “beeplebopple,” using that word to talk about a pattern of characteristics they notice. We do that all the time. For instance in saying that some people are “Type A,” or “emotionally unavailable,” “an extrovert,” a “dry drunk,” or even “a Karen.” But none of this involves alleging a physical cause, a pathology, or a disease. Let there be beeplebopple to talk about people like your brother–sure, why not!
Well said! I like your comment, too!
I agree with meremortal and Steve.
And the distress we or “doctors” witness should never lead to being seen or understood as being lesser than other humans who are also on this “spectrum”.
It should not lead to being medicated with random chemicals, by force OR lies.
It should not lead to people begging for mercy.
And in all this, we need real doctors to say “we don’t know”. We also need them to stop having the rights to dehumanizing anyone.
The easiest thing in the world is to look at behaviour and find it confusing.
But to turn that confusion into some crazy assed paradigm that takes a human’s rights away, is irrational. Who then is the real problem.
The problem with the business of “othering” people IS that it affects every part of their lives, making their lives much more difficult than need be.
Why should psychiatry or neurology hold that power, to make people’s lives shittier?
BTW, I was not anti vaccines, although I knew enough to know to be leery… YET, I have personally seen some bad outcomes, that were definitely due to vaccines.
In the case of a friend’s toddler, it was even admitted, but they claimed a “bad batch”
It may interest people to know that the term “autism” was coined by Eugen Bleuler, the same psychiatrist who invented the term “schizophrenia.”