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’.”
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.
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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.
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This is so accurate, and not just for kids but also adults with behavioral diagnoses.
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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.
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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.
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I disagree. All labels come with the potential for misuse.
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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.
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We accept the label or reject it.
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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.
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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.
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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.
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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.
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Agree 1000%
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Amen.
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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.
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I agree with you and appreciate the feedback!
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