It was really brought home to me when I met the mother of a child who was refusing to go to school and was having all sort of challenges. He was assessed for autism and ADHD and did not receive either diagnosis. She said to me with tears in her eyes, ‘I guess it is my fault then’.
It's a good question and I think part of the problem is we are so limited in our view of what it is worthwhile for people to be good at. I'd love to see children celebrated for being kind, or coming up with good games, or interesting things to say, or making stuff, solving problems, the list goes on. What is really behind it is whether they are useful and productive in capitalist society. If not, they are basically rendered worthless, so the pill is sweetened with a diagnostic explanation.
This is something I sit with often as someone trained in the diagnostic criteria: we know there's a continuum, that the line between "meets criteria" and "doesn't" is often a matter of one or two points on a test, not a clean biological boundary. But I don't think the general public knows that.
They hear "diagnosed" or "not diagnosed" as a binary, because that's how services, accommodations, and language are structured around it.
Which means a child sitting just below the threshold gets none of the explanation and none of the support, while carrying nearly identical struggles to the child just above it. We've built a system where half a standard deviation decides whether a struggle is legible or invisible.
I think that middle group; neither clearly "disordered" nor clearly "fine"; deserves support based on need, not based on which side of an arbitrary cutoff they land on. The diagnosis should open a door to support. It shouldn't be the only door.
I agree, as someone else who is trained to diagnose. The talk of neurotypes and 'you can't be a little bit autistic' gives the impression of clarity, of distinct groups.The neurodivergent and the neurotypical. But it's really not like that at all when you're conducting diagnostic assessments. Some are clear, many are not - and sometimes it comes down to whether the parents want the diagnosis or not.
Feeling this so much - thank you. My child is one of these not (yet?) diagnosed, yet not "normal" students. The shame, stigma, social expectations, and presumptions of which you so eloquently write are swirling all around us, especially as his elder brother is quite the student and excels in everything academic. We too have had the dyslexia question. l've been feeling the pull to take my youngest out of school, because l can see where this is headed. Yet though he dislikes the classroom experience, he doesn't want to homeschool or change to a different setting because he loves his school friends. But l know the longer he stays, the more he'll come to believe he's stupid, and l don't want him to internalize that belief. He's quite bright in ways that school doesn't measure. Trying to find the courage to make the jump.
This is one of the unfortunate consequences of the world we live in. I know a few school psychologists who would tell me about teachers pressing them to give certain children a diagnosis, because without having a label they wouldn't get any additional support for those children. The children were struggling, but didn't quite meet the criteria. So the psych's either had to fudge the numbers so the children (who were clearly in need) could get the additional support, or say they don't meet the criteria (which they didn't) and leave them to struggle.
Our western cultures reward people for being intelligent and able-bodied, and we cannot rip that out of the culture without destroying what makes it special -- a drive to grow, progress, build, improve, make beautiful things. Any attempt to raise up people of less ability (instead of simply taking care of them) I find patronizing. I have personally found the best solution for my own acceptance of my disabilities to be in embracing western Buddhist thought, in which interdependence is emphasized over the elevation of self.
Diagnosis is valuable for the information it gives the affected person (or their caregivers). I can see why it might be difficult for the people left with just less ability and no label, but maybe an additive approach might be effective -- to teach all children why the world would be less without any one of their classmates.
I wish the diagnostic process was more of a complete profile that just a single diagnosis. I was told in 2009 that my child had “high functioning autism,” but no one helped us understand how his struggles related to his diagnosis or how his strengths could be encouraged.
For the child who doesn't qualify for a diagnosis, a profile approach would still help her and her family understand how to support areas of struggle and encourage areas of strength. Even with intellectual disabilities, there are so many other areas where a child may be gifted, such as the arts.
I've thought about this a lot. It especially irks me because even a lot of the kids who WOULD meet enough criteria for a diagnosis often just...don't get one. Whether because their parents weren't interested in them, their teachers were too busy and stressed by other children to properly notice or they had something going on in their life that all of their struggles got blamed on. And for those kids a lot of the inclusiveness culture can leave them feeling even more unseen than if they were in an environment that simply had no knowledge of neurodiversity and learning disorders at all.
Spot on. I also wonder what the current narrative says to the individuals who are experiencing difficulties who don’t meet the diagnostic threshold for a neurodivergent diagnosis, but do meet the diagnostic threshold for other less socially acceptable “psychiatric / mental health disorder” diagnoses in the DSM (that we are all trying to destigmatise). I can’t help but think that the conscious effort to make a distinction between neurdevelopmental disorders and ‘other’ mental health disorders inherently has an othering & stigmatising effect.
I have been thinking about this a lot lately, so this is a timely post. Thanks for articulating so clearly what I’ve been worrying about.
I think my daughter has a range of neurodivergent traits, but is unlikely to meet the diagnostic criteria for any particular diagnosis.
She is struggling in mainstream primary school in a range of fairly non specific ways.
It feels like a really tricky place to be.
It was really brought home to me when I met the mother of a child who was refusing to go to school and was having all sort of challenges. He was assessed for autism and ADHD and did not receive either diagnosis. She said to me with tears in her eyes, ‘I guess it is my fault then’.
Oh. Feeling with that mother.
Yes, that’s it exactly. It must be my fault, my parenting.
It doesn't help that we livie in a society that fines parents and threatens to lock them up if they don't send their children to school.
oh no that tugged at my heart
It's a good question and I think part of the problem is we are so limited in our view of what it is worthwhile for people to be good at. I'd love to see children celebrated for being kind, or coming up with good games, or interesting things to say, or making stuff, solving problems, the list goes on. What is really behind it is whether they are useful and productive in capitalist society. If not, they are basically rendered worthless, so the pill is sweetened with a diagnostic explanation.
This is something I sit with often as someone trained in the diagnostic criteria: we know there's a continuum, that the line between "meets criteria" and "doesn't" is often a matter of one or two points on a test, not a clean biological boundary. But I don't think the general public knows that.
They hear "diagnosed" or "not diagnosed" as a binary, because that's how services, accommodations, and language are structured around it.
Which means a child sitting just below the threshold gets none of the explanation and none of the support, while carrying nearly identical struggles to the child just above it. We've built a system where half a standard deviation decides whether a struggle is legible or invisible.
I think that middle group; neither clearly "disordered" nor clearly "fine"; deserves support based on need, not based on which side of an arbitrary cutoff they land on. The diagnosis should open a door to support. It shouldn't be the only door.
I agree, as someone else who is trained to diagnose. The talk of neurotypes and 'you can't be a little bit autistic' gives the impression of clarity, of distinct groups.The neurodivergent and the neurotypical. But it's really not like that at all when you're conducting diagnostic assessments. Some are clear, many are not - and sometimes it comes down to whether the parents want the diagnosis or not.
cannot agree more!
Feeling this so much - thank you. My child is one of these not (yet?) diagnosed, yet not "normal" students. The shame, stigma, social expectations, and presumptions of which you so eloquently write are swirling all around us, especially as his elder brother is quite the student and excels in everything academic. We too have had the dyslexia question. l've been feeling the pull to take my youngest out of school, because l can see where this is headed. Yet though he dislikes the classroom experience, he doesn't want to homeschool or change to a different setting because he loves his school friends. But l know the longer he stays, the more he'll come to believe he's stupid, and l don't want him to internalize that belief. He's quite bright in ways that school doesn't measure. Trying to find the courage to make the jump.
He can homeschool, join a co-op or art class and make new friends, and also keep his school friends by inviting them for weekend activities.
This is one of the unfortunate consequences of the world we live in. I know a few school psychologists who would tell me about teachers pressing them to give certain children a diagnosis, because without having a label they wouldn't get any additional support for those children. The children were struggling, but didn't quite meet the criteria. So the psych's either had to fudge the numbers so the children (who were clearly in need) could get the additional support, or say they don't meet the criteria (which they didn't) and leave them to struggle.
Our western cultures reward people for being intelligent and able-bodied, and we cannot rip that out of the culture without destroying what makes it special -- a drive to grow, progress, build, improve, make beautiful things. Any attempt to raise up people of less ability (instead of simply taking care of them) I find patronizing. I have personally found the best solution for my own acceptance of my disabilities to be in embracing western Buddhist thought, in which interdependence is emphasized over the elevation of self.
Diagnosis is valuable for the information it gives the affected person (or their caregivers). I can see why it might be difficult for the people left with just less ability and no label, but maybe an additive approach might be effective -- to teach all children why the world would be less without any one of their classmates.
I wish the diagnostic process was more of a complete profile that just a single diagnosis. I was told in 2009 that my child had “high functioning autism,” but no one helped us understand how his struggles related to his diagnosis or how his strengths could be encouraged.
For the child who doesn't qualify for a diagnosis, a profile approach would still help her and her family understand how to support areas of struggle and encourage areas of strength. Even with intellectual disabilities, there are so many other areas where a child may be gifted, such as the arts.
I've thought about this a lot. It especially irks me because even a lot of the kids who WOULD meet enough criteria for a diagnosis often just...don't get one. Whether because their parents weren't interested in them, their teachers were too busy and stressed by other children to properly notice or they had something going on in their life that all of their struggles got blamed on. And for those kids a lot of the inclusiveness culture can leave them feeling even more unseen than if they were in an environment that simply had no knowledge of neurodiversity and learning disorders at all.
Spot on. I also wonder what the current narrative says to the individuals who are experiencing difficulties who don’t meet the diagnostic threshold for a neurodivergent diagnosis, but do meet the diagnostic threshold for other less socially acceptable “psychiatric / mental health disorder” diagnoses in the DSM (that we are all trying to destigmatise). I can’t help but think that the conscious effort to make a distinction between neurdevelopmental disorders and ‘other’ mental health disorders inherently has an othering & stigmatising effect.
All these weights and measures are completely toxic. Which is congruent with the society being completely toxic. So there you go.