Yes, I agree. It’s erasure of people with disabilities.
If you ever have some time on your hands, I recommend checking out the reddit community r/spicyautism. The people who post there are usually Level 3, nonverbal, partially nonverbal or have high support needs. They left r/autism because they were tired of getting shouted down by Level 1s.
They are also much nicer to parents.
Got a little more background. The reason neurodevelopmental disorders are in the DSM is because they were originally Disorders Commonly Diagnosed in Childhood and there was no knowledge at that time about their causes or neurological characteristics. In fact, autism was considered childhood schizophrenia at one point.
Today we are far from a consensus about how autism might be different than a psychiatric disorder, neurologically speaking.
As far as why the DSM shies away from causation, according to my husband, “Because before they stopped doing that it was a total shit show filled with psychodynamic bullshit.”
I told him he should start a YouTube channel.
I think it’s important to understand that none of the studies cited here or the conclusions drawn from them represent anything like a scientific consensus. In fact, I’ve read studies making the opposite claims - that early diagnosed childhood autism is more likely to become undetectable later in life. We are in the infancy of autism research. It’s going to be decades before we come even close to understanding this through a scientific lens, and probably even longer than that before we have a broad consensus.
I think it’s because they have absolutely no clue as to causation.
There are things on the medical side that are just descriptions, and sometimes they learn more about it and add causation (which usually improves treatment). An example is “primary biliary cirrhosis”, which just means “the liver develops scar tissue and stops working well, and there’s no obvious cause”. (“Primary” meant, “not caused by something else”. Alcoholic cirrhosis is more common.) It’s since been discovered that it’s usually an autoimmune disease (like type 1 diabetes, but the immune system slowly attacks the liver) and treating it as an immune disorder has led to major advances in the life and health of people who have it.
But i really don’t think anyone knows the underlying causes of much of anything in the DSM. And because central nervous system neurons don’t normally grow and replace themselves in adults, maybe knowing the cause won’t lead to treatment, the way it does in other organs. And because " how our brain works" is so central to our identity, maybe people don’t (usually) want their brains to be “fixed”.
So the DSM is kinda a collection of conditions that we try to deal with constructively, without actually understanding what’s even going on.
Really not in general. Mostly the current DSM splits most everything categorically with then individuals getting labeled with several categories; ASD is one of the few in which it has moved more toward lumping. Apologies in advance but this post is likely going get deep into the weeds, both about the history of the DSM and psychiatric nosology beyond it, and the fact that to me psychiatric diagnoses in general are neurological conditions.
The DSM began with classification based on presumed etiology actually. “Organic” vs “function” … Understanding of etiology though was so poor that it was way off base and not the best tool. By DSM-III they “replaced psychodynamic formulations and related terminology with criteria that were atheoretical and agnostic with regard to etiology of psychiatric disorders.”
The move from there was refinements of the superficial descriptions without much dissent, mostly with more splitting, until the lead up to DSM-5: “The main priorities for the DSM-5 revision of the criteria were to incorporate etiological and neurobiological research into definitions of psychiatric disorders and to improve clinical utility of the criteria …”
It was already very clear that the same symptom complexes had different root causes and that the same root causes had different presentations. In one family cohort OCD anxiety and depression could all be common in different individuals and respond well to one medicine, while that medicine would be ineffective for a different cohort. It was very clear that the superficial descriptive method was missing shared causes across arbitrary diagnostic boxes. Problem was and is that the neurobiology is more understood but not understood enough. DSM-5 stayed atheoretical.
Disappointment in and criticism of that outcome lead to the Research Domain Criteria Initiative (RDoC).
DSM still rules but the flaws of its approach are significant. A good discussion about the tension here:
This DSM-ICD approach embraces an Aristotelian view of mental disorders as largely discrete entities that are characterized by distinctive signs, symptoms, and natural histories. Over the past several years, however, a competing vision, namely, the Research Domain Criteria (RDoC) initiative launched by the National Institute of Mental Health, has emerged in response to accumulating anomalies within the DSM-ICD system. In contrast to DSM-ICD, RDoC embraces a Galilean view of psychopathology as the product of dysfunctions in neural circuitry. RDoC appears to be a valuable endeavor that holds out the long-term promise of an alternative system of mental illness classification
Highlight there the emphasis on psychopathology as a product of neural circuitry. Just like other brain disorders that get labeled neurological in origin.
The whole article is worth a read. Comorbidities being the norm challenges it’s usefulness:
some scholars have voiced concerns about the use of the “comorbidity” concept in most cases of psychopathology research given that it is unclear how many DSM conditions are distinct clinical entities (Lilienfeld, Waldman, & Israel, 1994), extremely high levels of covariation among ostensibly separable conditions may raise questions concerning their etiological independence.
The extent of the comorbidity problem is difficult to overstate. In the Australian National Survey of Mental Health and Well-Being, 21% of participants with one DSM-IV disorder met criteria for three or more DSM-IV disorders … the presence of rampant comorbidity is a red flag that the DSM system is not drawing the correct diagnostic borders. Other authors (e.g., Maj, 2005) go further, suggesting that such comorbidity reflects the propensity of the DSM to attach different names to slightly different manifestations of a shared predisposition, a logical error known as the jangle fallacy
RDoC is not ready to replace DSM. But I have confidence that it will provide fodder to reconstruct the DSM gradually from its mostly atheoretical superficial checklist menu perspective to one that categorizes to actual root causes and with better treatment predictive value as a result.
I like how the article concludes:
In our view, the DSM-ICD will never provide a sufficient foundation for a comprehensive classification system, because psychiatric signs and symptoms, like fever, are inevitably nonspecific indicators of a host of psychobiological dysfunctions. Conversely, RDoC will similarly never be sufficient for a comprehensive classification system, because psychobiological dysfunctions can be manifested in a host of markedly diverse signs and symptoms as a function of innumerable moderating variables. As a consequence, a full characterization of psychopathology will require the DSM-ICD’s remarkably astute descriptive observations, informed by the best available basic research on neural circuitry relevant to psychopathology.
Never apologize for getting into the weeds!
That is really cool, I never heard of RDoC. I’d never considered that the high rate of comorbidity was a classification issue, but it makes sense.
You’re talking to a woman who has been diagnosed with, at some point in my life, PTSD, recurrent major depressive disorder, dysthymia, panic disorder, agoraphobia, PMDD, social anxiety disorder, ADHD - predominantly innatentive, and anxiety disorder not otherwise specified. (Not in that order.)
Some of those were flat out wrong but I can tell why it looked that way. Others are just a matter of perspective, I think. And some of them have held stable across time and seem pretty accurate and fixed to me.
I think you mentioned being a pediatrician? I wondered are you ever a part of those diagnostic teams required for insurance? Or what is your role mainly when dealing with neurodevelopmental disorders in children? Evaluation? Referral? Just curious.
Our first role is screening both informally and formally with selective validated instruments such as the modified checklist for autism in toddlers (MChAT). Referral for early intervention services and for diagnostic assessments. And lots of on the ground explanations and support.
Most of us are comfortable diagnosing and treating ADHD (again with use of validated tools, commonly the Vanderbilt) and if some were not already comfortable with both the diagnosis and medication sides of depression and anxiety the inadequate availability of child psychiatry forced some to up their game.
Just per chance my last two days has been chock full of ADHD and autism ranging from a profoundly delayed autistic eleven year old with massive weight gain and as of today prediabetes from the risperdone that neurology has prescribed (and which is working wonderfully), to several bright kids in kindergarten falling apart who will likely get official ASD diagnoses soon. While waiting on evaluation for that we are also doing evaluation for a ADHD label and if that hits the scores may see if a stimulant helps some. The other is clearly more decompensating during transition times in a big classroom and gets bored when it’s numbers time as his math skills are advanced. Yes he has always loved trains and building things why do you ask? Discussion about the label we have had. I know of one pediatric colleague in my larger group who does ADOS testing but few of us do. A bunch of ADHD follow ups and a few evaluations for possible. So all this is very much in front of me.
When I was a camp nurse for kids with HIV, pill swallowing could be an issue. We had kids who’d learned the skill and could swallow a dozen pills a day, kids that were trying but still struggling and we’d make it a ‘camp goal’ rallying around them taking tictacs and advice. But we also had kids whose caregivers were adamant that they couldn’t do it, don’t even try. They might all be the same age, in the same cabin. Now, in case you didn’t know, liquid meds in general and HIV meds in particular are often foul tasting, and some of these kids would need to take 20-30ml twice a day. Some would balk and we might have them stuck in the infirmary ‘you can’t go out and do what your cabin mates are doing until you take your meds, and if this goes on too long, you have to go home.’ It’s something we hated, but was spelled out loud and clear before camp starts.
A parents first impulse may be to protect their child, but it might not be the best long term choice. I wouldn’t be surprised if that was a factor in some of the early diagnosis/worse outcome cases.
I might suggest labeling those as unpleasant ‘but worth it’, or ‘not worth it’ with a goal to move things from one column to the other.
ETA, I can tell all kinds of stories about amazing kids and how much more they can handle than people sometimes think.
We moved our kids to pills as soon as i realized there was a pediatric option. Plain antibiotics taste terrible under all the sugar. I was surprised by how long some of their friends stayed on liquid meds. I didn’t realize this was a difficult skill to learn.
Wow @DSeid and @outlierrn , this is all very interesting. Thank you!
Aww, I realize this isn’t the point of the story but this made me tear up. My kids don’t have HIV but they both took a while and quite a few tictacs to figure out how to swallow pills (they can both do it now, though), and it is wonderful that you and the others were there for the kids like that.
Those poor kids with the other caregivers, though!
nods Yeah, that’s a good idea. This has been sort of implied (the things I’ve made her do are things that had an end point that she thought was worth it, it’s just that before I got The Talk from the therapist I’d be likely to do it for her) but with my kid it’s always a good idea to spell things out explicitly, just in case.
I mean. I am totally here for this 
It’s impressive you understand these issues so well as a pediatrician. Ours has been middling.
We did do the MCHAT, but our pediatrician was pretty slow on the uptake when we expressed concerns prior to that. I think one of the issues is that our son had an expansive vocabulary and spoke in complete sentences and if you didn’t spend a lot of time with him you didn’t realize it was rote repetition. So it very much seemed like, “He’s talking, he’s fine.”
We did have him evaluated for speech delay at 18 months, however by the time we actually got to see someone his vocabulary had exploded and again,“he’s talking, he’s fine.”
A lot of the early years were, “This kid’s pretty unusual. Is it autism? What else could it be? We should wait and see what develops.” Keep in mind neither of us had much experience with what typical development at that age even looks like. My husband’s experience is with older kids. He was confident it wasn’t OCD, at least.
I remember the moment it really hit home. We were watching Taskmaster (recommended) and they had a little girl as a special guest. She was a bit younger than my son, probably. She came in, immediately started pretend play, asking the adults questions, responding to their questions, and I was just floored. Nothing like my kid. Then when he started daycare at age 3, he had zero interaction with his peers, and that’s when we decided it was time. That coincided with the MCHAT screener and finally we had the pediatrician on our side.
I remember before we went to the bridge authorization evaluation, my husband sent the psychologist a video of my son walking back and forth on tiptoes stimming over the toaster oven countdown timer for fully five minutes and she responded something to the effect of, “You’ve come to the right place.” LOL. Never had to convince a single developmental psychologist of anything.
My friend’s kid was recommended for testing by the pediatrician. I don’t think they’d really been aware he was different. He was pretty young when that happened, maybe less than 2.
In all fairness, the pediatrician figured it out by the time he was three. We were just hyper-aware parents, I think. A lot of places won’t even evaluate until age three, although some do as young as 18 months.
His pediatrician now is a guy who has an autistic brother. I’m not overconfident in his expertise but he seems to at least be familiar with the issues. He reassured us a lot when we were freaking out over the food issues. “He’s growing. He’s healthy. He’s fine.”
And to be fair, there is the balance that this thread addresses that plays out. We want to identify those at risk by screening and refer, and we want to avoid pathologizing every variation from and of “normal” …
I think most people have a part of themselves that feels weird and alien to whatever the mainstream is. Some people are more weird and alien than others, for a whole slew of reasons, from personal experience to inborn personality traits to neurodivergence. So I think it can be very appealing to find out there is a single overarching reason for all this angst, and that reason may connect you to other people like you where you might actually belong.
I get that. And I think it’s something people might long for whether they meet some diagnostic criteria or not. I think it explains the rise of self-diagnosis and the phenomenon of therapy-influenced language and culture.
When I think about myself though, I’ve already found my people. There happen to be a lot of them that are neurodiverse, but also many with crazy mothers, fellow writers, etc, you know, I don’t know and I may never know what makes me so weird. Probably a wide variety of factors. But at a certain point it doesn’t matter. I think society is more open to weirdness than it’s even been before. Maybe at this point in my life, I should just be content with a self-diagnosis of weird.
It seriously is a mindset I embrace personally and professionally. Weird is not abnormal. It is not a disease state even if my flavor of weird lines up nicely with some box. Weird can present problems and it can offer gifts. “All the best people are.”
There are pluses to labeling. Clearly granted. I just don’t take the labels as necessarily meaning all that much. They their place and IMHO their place is not core to our identity.
Well, as an ER nurse, I’m adjacent to a lot of things in this thread without being formally trained in any of them, so I didn’t want to derail the thread. I will tell a story, though.
One year at camp, we had a new kid, first year at camp, maybe 6-7 years old, who was balking at his meds. Kids, being people, will sometimes try to push the limits in a new setting. Alternatively, they can regress when stressed and behave like they did when they were a year younger (geriatrics can do the same, but they progress forward instead of back). For whatever reason, he was balking and his nurse asked me to come and help. That year I had one of my regulars, a little spitfire of a kid 2 or 3 years older so I enlisted his help. I’m not sure what I was expecting, but he just sashayed over and took charge. ‘You don’t want to take your meds, what’s wrong, think they’re nasty? Let’s take them together. Look, I got more than you do. Oh, you got the blue ones? I used to take those, now I’ve got the reds ones, they’re better.’ The new guy was just overwhelmed by this, looking up and his new best friend, eyes wide, just going with it. We were designated med buddies for the rest of camp (hey, they don’t need to know that I’m taking multivitamins and ibuprofen). I don’t take any credit for that, but watching it unfold made my heart swell up like the Grinch at Christmas.
We don’t have HIV camp anymore, they were mostly peripartal infections and that’s almost eliminated now. We went from trying to give them a few good years, to teaching them to be responsible sexually active teenagers, to all of them surviving to age out.
Dseid - or others - can you shed light on the practice of multiple similar diagnoses? I often see individuals who are diagnosed with depression, anxiety, bipolar, ADHD, and PTSD. Or, on the physical side, degenerative disc disease, rheumatoid arthritis, psoriatic arthritis, and fibromyalgia. Does the person diagnosing believe the patient actually exhibits all of the diagnostic criteria for all of tose conditions? Or aspects of each of them? Do they try to differentiate which symptoms are attributable to which conditions? How do such multiple diagnoses aid in prescribing treatment? And how do they effect the patient’s perception of their condition?
I especially find if confusing when conditions lack obvious objective signs, such as diagnosing an individual with migraines, tension headaches, and somatoform disorder. Or fibromyalgia and myofascial pain disorder.
Multiple conditions can co-exist and impact each other. To my mind the meaningful part is -
Using your examples in reverse order:
Headaches can be multifactorial. Migraines with muscle tension headaches triggering each other, maybe sometimes throwing temporomandibular joint dysfunction in the mix … all capable of causing pain on their own, and triggering each other. All need to be addressed in concert.
The individual has pain. Some is primary from an autoimmune inflammatory joint condition, some is reactive muscle in nature, and some may even be the impact of chronic pain and its treatment on creating self perpetuating pain and dysfunction long term. All have to be recognized and addressed.
Common that ADHD and anxiety symptoms co-existing. Is the inattention caused by anxiety, the anxiety caused by the ADHD, or do both exist as primary conditions? A standard approach is to make a best guess at one being more primary or more significant anyway, aim treatment at it first, and see what is left. Sometimes the person will land with both conditions labeled and treated or the other one than started. It was thought to be primarily ADHD at the start but turned out anxiety treatment was the key. Or the child who initially met criteria for ADHD and responds inadequately to treatment ends up a teen with bipolar disorder, possibly always had that biology causing symptoms but didn’t meet diagnosistic criteria earlier.
Occam’s razor is a great principle but is not always the way things land. Still when it so rarely lands the “comorbidities question” above, that it reflects the inadequacy of the classification system rather than different independent or even related pathophysiologies, has to get raised.
Lastly the “perception of the condition” is a question of the OP.
Wow, that is amazing. That is making my heart swell up too
This is also so great. What a wonderful way to lose a job!
My child has ASD (diagnosed) and anxiety (I don’t think she has an actual diagnosis recorded anywhere, but she was seeing a psychiatrist and on a low dose of anti-anxiety medication for a while, so that probably counts for something?) but I firmly believe that these are not two separate issues even though they might be two separate “diagnoses.” The anxiety is specifically anxiety about Being Wrong, and that is at the root of every anxiety she feels (she isn’t anxious about public speaking, but used to be incredibly anxious about speaking in spontaneous social situations – though she’s gotten somewhat better about this as she’s gotten older and has gotten more practice at it) and also is clearly related to her ASD behavior (black and white thinking, rigidity).