A new qualitative study published in JCPP Advances gives voice to adolescents with ADHD and autism, highlighting how distress often emerges from exclusion, masking, and sensory overload rather than from individual flaws.
The authors frame their work as a corrective to research that has largely relied on adult reports of children’s “emotional dysregulation.” They argue that deficit-based models often ignore the social and sensory contexts that give rise to distress. Instead of treating feelings as symptoms, the adolescents frequently described them as reasonable responses to unfairness, stigma, or overwhelming environments.
The project, led by University College London researcher Georgia Pavlopoulou, involved interviews with 57 young people in the United Kingdom, ages 11 to 15, each diagnosed with ADHD, autism, or both. Twenty-four participants had ADHD, 21 had autism, and 12 had a dual diagnosis. The interviews were co-designed with a youth panel, and the analysis followed a reflexive thematic approach.
A 12-year-old autistic girl captured the pain of public narratives that cast autism as a problem to erase:
“When people sum autism up as a negative thing, it makes me feel like I am worthless. When people say it’s something that needs to vanish, I feel like I am an odd species, speaking an unknown language. How am I supposed to feel confident with these thoughts around me? How am I supposed to happily unfold? It slowly starts to hurt me. You can’t fix me ‘cause there is nothing wrong with me and … the only thing to fix is the world’s perspective’.”
You've landed on a MIA journalism article that is funded by MIA supporters. To read the full article, sign up as a MIA Supporter. All active donors get full access to all MIA content, and free passes to all Mad in America events.
Current MIA supporters can log in below.(If you can't afford to support MIA in this way, email us at [email protected] and we will provide you with access to all donor-supported content.)
It’s good to see qualitative research that is investigating the child’s emotional, psychological and physical response to school environment, and it seems very probable, doesn’t it, that what we call ADHD is young children full of life and energy in a repressive, conformist context of education learning things that often have no obvious connection to their actual day to day lives or the world, subjects such as geography, maths, science, which is not about living and about relationships and the things that constitute real life. Adding to this, there are frequently and to an ever increasing extent stresses and pressures in their home life, and in their cultural and social lives more generally with all the social pressure of media, advertizing, technology etc, so there are increasing tensions and stresses in the lives of children and this meets an anachronistic and increasingly stressful and poorly funded education system, so it is obvious how social factors can create the phenomenology we call ADHD. So becoming fidgety, distracted etc implies frustration, which is fully comprehensible in relation to the total social environment, but it becomes a problem in the class room because of our authoritarian approach to children especially in education and psychiatry.
But the same can obviously not be said about what we call autism, which although diverse and although discontinuous (what they call ‘spectrum’), is clearly a more complex developmental adaptation to the environments through time, since birth perhaps, and hence there are non-typical responses to environment, another example such non-typical responses being what we call OCD and psychosis, and to investigate and uncover how the developmental adaptation that we call autism came about, we would need to investigate further much further and conduct a deep investigation of their familial, social, psychological and emotional development through time, and discover the psychological adaptations and how they help mitigate the difficulties faced by environment – but this would task would be impossible for scientific investigators unless they deeply understood their own consciousness through deep investigation and direct observation, because they wouldn’t know they were looking for and would do a terrible job. I know this sounds judgemental but let me explain because it is not what you will expect me to say.
It is clear that with what we call classic autistics, without wanting to stereotype, the consciousness tends gravitate towards the mental aspect, the cognitive aspect, which controls and regulates, though this is not universal, but obsessions, need for routine, intolerance of emotional ambiguity (I can’t bare these descriptions by the way because they are not a true deep understanding of the person), are frequently the typical description. But autistic savants who have incredible artistic or musical skills operate in a different part of the mind – the listening, seeing, observing and conveying aspect, not so much it seems the control/self-regulatory region (typically associated with the frontal lobes), so it seems that this may be an alternative region of polarization of the mind – to anchor it in a particular aspect of conscious life, whether it be the thinking, controling and worrying intellectual process, or the perception and understanding and mimetic conveyance aspect of the mind, but other polarizations are possible that are not at all what we could call autism. Impulsivity and indulgent behaviour seems to be a polarization toward the desire/sensation tendency of our life energies (these are real phenomena in consciousness but words are not real yet I have to use something), another polarization is toward the emotional, heart aspect so tendencies to be emotional, affectionate, and sad, polarizations to the imaginative aspect for people who are highly imaginative, daydreaming and creative, to the security aspect so someone is fearful and defensive – there does seem to be a general adaptive response in many youth these days which seems to imply that the total weight and complexity of social and psychological experience is too much, so the consciousness gravitates to certain aspects of consciousness which means other aspects tend to be less clearly perceived in that consciousness and possibly not at all. Of course psychopathy is an extreme version of this gravitation toward the intellectual and sensuous but being cut off from the emotional (to put it all very crudely. Really we should all be observing and understanding inner conscious life, not discussing it verbally like this.
But this is another very complex aspect of the problem of the emotional, psychological and neurological adaptations brought about by the social environment and social trauma/suffering. Of course it is all infinitely complex because this is the reality of infinitely complex human beings, so the brain of a psychiatrist cannot be expected to be capable of acting intelligently in the infinitely complex physiology, neurology and conscious existence of another human being. The only solution is to provide loving, secure and healthy social environments which is the last thing society or psychiatry thinks about when they address the problem as ‘mental illness’, obviously.
So why wouldn’t scientific investigators be able to uncover this? Because you have to deeply understand the dynamic structure of your own consciousness to be able to see what’s going on with clarity in an outward presentation of another person, or to know what questions to ask and what areas to investigate. This demands perception and understanding of oneself, what the East call meditation, or if you have a profound psychological crisis that is an excellent and often imperative opportunity to discover these deep structural dynamics of consciousness.
But I’m afraid I really do believe that many hundreds of millions of children around the world are almost without hope, because they have been damaged by a society so ignorant it will never wake up to it’s appalling mistakes until it is all too late. Perhaps you can help a child by providing them love, support, freedom, or the resources to escape this mad society, but psychiatry and psychology will never be the answer to liberating children from this nexus of danger – they will only entrap them in false understandings of their difficulties and into inadequate systems that only tend to encourage dependency, not true empowerment which comes from a true relationship with someone who cares about you, understands the value of your freedom, and can support you in being a secure, loved and understood human being. If we don’t start DISCOVERING this fact then there is little hope for those that get caught up in the illusions and destructive processes of this society. I don’t believe school is a healthy environment for children if it ever was, but certainly in many cases it may be the healthiest one many of them have for now, which itself is a calamity.
Report comment
The adolescents quoted in this excellent article have far more awareness of themselves and their surroundings than most adults. That alone should tell you something.
But what should tell you even more is how often adults prefer the sound of their own voice than hearing what the kids themselves have to say.
It seems worth asking who benefits most from DSM labels of any kind.
Report comment
This is so accurate, and not just for kids but also adults with behavioral diagnoses.
Report comment
Why is it so many “educated” adults have no idea how isolating it is for youngsters to be given a negative label?
Could it be because it gives “educated” adults the chance to label themselves positively?
I don’t think “neurodiversity” is as diverse as we’re led to believe.
Report comment
The label is just a label until someone decides it’s negative. We don’t not want the label, we want it to stop being seen as a negative one.
Report comment
I disagree. All labels come with the potential for misuse.
Report comment
Here’s the problem with that: labels have a way of becoming negative, so those who think they own it lose control over it.
Better to ditch labeling altogether, IMHO.
Report comment
We accept the label or reject it.
Report comment
To each his own. That’s how I see it.
No two brains are alike, yet the need to be seen as unbroken is common to every human being.
Report comment
Neurodiversity and Neurodivergense are certainly extremely diverse and far better as far as labels go to describe something that the more common neurotypical people can use to politely describe something they themselves can’t experience directly. I am 33 years old, autistic and have ADHD and it’s far easier to identify as Neurodivergent than to try and attempt to explain how my different clinical diagnosis affects my daily experience of life. In fact we are so diverse that any 2 autistic people are not at all similar except in how different our perspective is from the more common world view. The world itself is in fact not at all built in such a way that makes how I fit into it seamless. And I have long since given up trying to fit into that world at all. I am the way that I am, take it or leave it and if I like you enough I’ll try harder to act in such a way that helps you and makes you feel good too. And that works just fine.
In other words, neurodiversity is 5 times more diverse than you are led to believe.
Report comment
I believe neurotypicality is a myth, meaning I see labels like “neurodiverse” as moot.
And this is from someone who would very likely have been labeled with ADHD and high-functioning autism if I had been tested for them, which thankfully I never have been.
Report comment
Here’s what I meant: neurodiversity isn’t as rare as some people think.
If I were you, I’d question my wanting a diagnostic label of any kind to describe who I am to people who don’t even know me.
Report comment
We can’t define “overdiagnosis” or “misdiagnosis” when the diagnostic categories are so utterly subjective. We need to get away from “diagnostic language” altogether and treat these children as the unique individuals that they are.
Report comment
Agree 1000%
Report comment
Amen.
Report comment
Still you are approaching it through an “us and them” perspective. If you begin to see “them” more as a “we” at least the language used could improve. Everyone is unique in some ways, group thinking, however well intentioned, is not the best approach. That is just my view.
Report comment
I agree with you and appreciate the feedback!
Report comment
Well said.
Report comment
These discussions have been going on for some years now with no clear results. The conversations also turn out to be self-contradictory in the sense that people are in some way admonished to endorse or accept, for example, their “ADHD” while taking, simultaneously, stimulant drugs intended to suppress the behavioral profile that has been labelled “ADHD”. It makes no sense.
In my opinion, the discussions are more characteristic of both an industrial complex that now aggressively seeks to colonize and open up new markets by abusing, and in some way, usurping people’s insecurities AND a society that now reformulates implicit social codes by referring to a psychiatric as opposed to a religious authority.
Elsewhere, although the industrial complex keeps denying it, some studies suggest that the stigma associated with mental illness more generally has become worse over the years. I’ve also heard a report by some working in fertilization clinics that most parents would prefer their kids to suffer from cancer rather than ADHD, which should prove the ludicrous nature of how our society handles behavioral abnormalities given that ADHD is usually characterized as one of the conditions with a quick fix. Here, I would also like to remind people that there are good reasons to believe that up to 75 % of all “ADHD people” do not, in any meaningful way, actually exhibit ADHD. Which should lead one to the conclusion that current society cannot actually be entrusted with the task of properly valorizing what is important as phantom conditions are deemed more severe than actual life-threatening diseases based on tactical disease-mongering by pharmaceutical companies alone.
With autism, the problem boils largely down to the incoherent notion of the autism spectrum, which obfuscates underlying medical problems and, I believe, protects medical professionals that way. A quite popular saying tells us that if you’ve met one autistic person, you’ve met one autistic person. Which leads me to the question. What was the point of the diagnosis again? If no one can tell you what exactly autism is, isn’t the inevitable conclusion that autism doesn’t exist? (Sure, I’ve had a major fallout with neurodiversity advocates over that, but they likewise refuse to accept my contention that severe autism is a metabolical disease of the brain caused by viral infections in the first two years of life. Incidentally, this was known in the ’80s but completely forgotten by now.)
Report comment
While I have major criticisms of psychiatry, why should children (or anyone) be referred instead to a religious authority? Do you have a specific religion in mind? Religion is a choice in the USA, including no religion. Furthermore, religion does a great deal of harm.
You mention several studies and reports, but cite none. I don’t believe you have any reputable source that says parents would prefer their children have cancer over ADHD.
Report comment
I didn’t say that a religious authority is necessarily preferrable over psychiatric authority, even though I personally am so inclined to agree.
I say that the breakdown in religion has left behind a space in regards to social and spiritual questions that is now being filled with, among others, psychiatric concepts. As such, people believing in psychiatric concepts end up mimicing at least some of the issues also seen in religion like rigid adherence to formalized systems of rules, “them vs. us” dichotomies and a reliance on an external authority figure to provide guidelines. If you’re willing to think through the reasons as to why ADHD constitutes a problem, you will end up with socio-economic reasons, but none of them are medical in nature. That it is still thought of as medical is a category error and one that keeps getting replicated because the socio-economic raison d’être of ADHD must be “forgotten” (elided in Foucauldian terms) at any cost so as to uphold certain core believes of western modern society.*
*Modern society has a vested, but never articulated, interest in children as both laborers and investments that will eventually return profits. Our entire educational system is built on that premise.
It’s just complicated by the economic incentives associated with psychiatric diagnostics which is absent for the regular believer where religious observance incurs debts and not profits.
My report in regards to what parents in fertility clinics say is down to a blog which has shut down (or at least unlisted from Google.) The blogger was working in a fertility clinic so I assume she was well-acquainted with what was going on there. Her reasoning was that parents were under the false belief that once their kid faced cancer because of a maximal polygenic heritability score for cancer, treatments would be available to combat it whereas they were much more pessimistic about high polygenic scores of ADHD. The blogger explained that, in her opinion, this was down to parents not wanting to take responsibility for difficult/disabled kids whereas they felt no responsibility towards adults with cancer.
That many ADHD evaluations and diagnoses, especially in adults, end up being given to people who don’t fulfill the original criteria is a well-known issue for which so many studies are available that I won’t cite them. The one study citing a 75 % figure of lack of neuropsychiatric abnormality in testing is, I believe, an article on this website.
The issue, however, is easy to hide by simply manipulating the instruments with which you measure something. Since ADHD is a freely invented construct, responsible actors can manipulate the definition as they see fit.
Report comment
I’d like more information on what you mean by a “breakdown in religion.” Can you elaborate?
I’m not disagreeing with much of what you said about ADHD, along with many things labeled as “mental illnesses.” I do disagree with something you said previously, that autism is caused by viruses. There’s no evidence for that. In fact, we know it’s genetic. Most people with autism do not want to be “cured.” Society needs to have more than the limited ideas of how humans should think and act.
You have one blog (entry?) that one blogger who works/worked in one fertility clinic and you *assume* she knew the ins and outs of the entire clinic well, and perhaps heard (about) an unspecified number of potential parents who claimed they’d prefer their child have ADHD over cancer. I cannot take that as an example of the overwhelming number of parents.
Report comment