A critique of how I learned it way back then:
Here’s a topic-adjacent article that describes the murkiness (and perhaps unintended consequences) of diagnostic categorization.
I don’t know if I wholly agree that lumping autistics together was a terrible mistake, but the rifts, divisions and politicized debate are accurate. This is a good overview of the struggle for resources and identity.
There’s an interesting fact that decades ago, 75% of diagnoses were profound autism, whereas now it’s about 30%. We have broadened the scope considerably, which has contributed to the misunderstanding that we suddenly have this “epidemic” of autism.
The article, again, does not mention Level 2 support needs. I would really like it as a society if we recognized that just because an autistic person can talk doesn’t mean they don’t have real limitations. And just because they can’t talk doesn’t mean they aren’t fully realized, intelligent humans. I do think there needs to be a distinction between non-verbal and non-verbal plus significant cognitive impairment. Parents of children with so-called profound autism are rallying around people like RFK Jr. because he’s one of the only people taking their struggles seriously. That’s the danger of denying representation and resources to the most disabled autistics.
I’m pretty sure it was a mistake to lump people who are socially awkward (sometimes extremely socially awkward) with people who can’t speak and are profoundly disabled. Neither group is well-served by that.
I mean… They are lumped together but they are also distinguished by support level. So are they really lumped together? I think as more research is done, these distinctions are going to start to get even more granular. Because socially awkward vs profound autism are probably completely different things. But you never want to get too granular with the DSM.
I just don’t think separating them out again is going to do anything to change the big picture of marginalizing families impacted by profound autism, because that was happening back when Asperger’s and autism were classified differently. Nor is it going to change the trend of parents of Level 3 kids ignoring the existence of Level 1 & 2 kids. I’m not convinced that rearranging these categories is going to heal these rifts.
I’m not sure if this is quite what you meant, but one thing I’ve found really interesting (and mentioned before) is that my ASD child has always had a large amount of anxiety about being wrong (which includes social situations). Until we got our awesome therapist, I hadn’t realized that in large part I’d responded to that by trying to smooth things over so that she was protected and insulated from situations that would be hard for her anxiety.
Well, the therapist encouraged us to expose her more to situations where she would have a hard time. There’s a line there, of course; sometimes there were things she 100% could not do, and the goal was not to throw her against a brick wall. But there were a lot of things that she could do with discomfort varying from “some” to “a lot,” and the therapist said that she should do as many of those as possible so that she could have lots of experiences with pushing past the discomfort and realizing she could do it and that it wasn’t so bad after all, and also of getting the rewards of doing the social thing or whatever. (For an example with a tangible reward, she asked her old teacher if she could have Magic cards that she knew he wasn’t using anymore, and he said yes!)
(Now, the other thing we did, at the suggestion of the therapist, was to put her on a very low dose of anti-anxiety medication for about a year to help just take the edge off of the anxiety she was feeling when trying to do these things that were hard for her, and that also helped a lot. She’s off of it now.)
Wait, it was?
I was under the vague impression that when it was split, whenever anyone said “autism” you knew it meant families with profound autism who needed a lot of support. Someone said “Asperger’s” and one was like, "oh, right, one of those nerds.”
Of course, in those days “support” meant “stick the kid in an institution,” so it’s not like it was a great time for all or anything.
I really agree with this.
As long as they’re all competing for the same grossly undersized pot of public resources, there’s going to be a huge rift. Renaming things is only rearranging the deck chairs of that free-or-all.
Separate from the above, a lot of people in this thread are throwing around detailed terms of art as if the general public has any idea what they are. Mentioning “level 2 autistic” reminds me only of this:
from
Having an autistic child of whatever level means becoming an expert. Your next door neighbor knows none of that. And may not care in the slightest.
That describes me pretty well, though more in the philosophical and moral sense, and in terms of my beliefs being consistent with reality. Think Chidi from The Good Place.
My son has a high amount of anxiety when things don’t go exactly as planned. It’s also something we need to work on with him. He gets extremely distressed extremely fast. Yesterday he had a screaming meltdown when I went to pick him up and his BCBA interrupted a video they were watching to run in and get his backpack. This was not a tantrum. It was an instant inability to cope with a change in plans. He just collapsed to the ground and started crying and screaming in the most heartbreaking way. The best thing I know how to do is try to hook him on something else. I sat down beside him and hugged him and told him his Beep Beep was waiting for him at home and he eventually came around.
But yeah obviously we need to work on his tolerance for interruptions.
Yeah, this was the best thing for my kid at this age, and later a therapist told me that redirection is actually a well-known therapeutic technique, and taught a variant of it to my then-much-older child – have you ever heard the “think of three things you see, three things you hear, three things you smell,” etc. calming technique? It’s the same idea, with your brain redirecting to sensory input.
I remember reading a lot of parenting books at this age that said one should try to commiserate with the kid (“Gosh, that must be upsetting!”) and this did not work AT ALL with my child, who would take this as external confirmation that she was extremely correct to be upset and which would set her off more. We always referred to her as “the kid who never read the parenting books.” (This technique worked with my other child, who was “the kid who must have read all the parenting books in vitro” because all the parenting-book techniques worked with him!)
These terms are explained in the linked article.
But basically everyone diagnosed with Autism Spectrum Disorder is assigned one of three categories. Level 1, support needed. Level 2, substantial support needed. Level 3, very substantial support needed.
Level 1 - maybe someone who struggles socially who requires weekly therapy or additional resources. Once called “high functioning.”
Level 2 - someone who is verbal but has significant social or behavioral challenges and requires support beyond weekly therapy. My son is Level 2 support needs. He has an IEP at school and recently transitioned from 24 hours a week of therapy to 4 hours plus some social skills support at school. I would now consider him on the lower end of Level 2 supports.
Level 3 - Usually refers to people who are nonverbal and require intensive support, may or may not include intellectual disability. Will probably not live independently and will require care for their entire lives.
I would argue that there should be a distinction between level 3 and level 3 + intellectual disability. There is a big difference in the level of support needed, I think.
Just wanted to add: some autistic people do NOT want to be hugged during a meltdown or any other time. My son happens to respond really well to physical affection.
To families with autistic members, maybe not. To the general public? Absolutely.
Data point: I have a kid diagnosed with, I guess, Level 1 ASD and the only time I’ve ever heard this stuff about Level 1 vs Level 2 etc. has been from @Spice_Weasel .
To be fair, she was diagnosed long enough ago that the terminology was “low support” vs. “high support,” and I haven’t exactly been keeping up on the lingo, but I definitely know a couple of families who have been diagnosed more recently (both would be Level 1) and who are much more on top of stuff like this, and I haven’t heard it from them either.
This is my kid. Now that she’s 15 she will grudgingly accept that she likes some forms of being touched if she knows about it beforehand. But when she was 5, no way.
Yes it is minimally time consuming to explain to parents blaming the MMR for the “autism epidemic” that the numbers overwhelmingly from how labeling has changed, and to some degree for good reason, including identifying those who could benefit from appropriate services more often and earlier when it can be of more impact. They just hear autism epidemic.
But the point of the article I linked to earlier is very significant here. Dividing autism by support level is of some use but the unavoidable false implication is that they all have the same condition that differs in degree.
The group diagnosed younger, typically but not always requiring more support, is getting labeled earlier and are being labeled as autism rather than some other label more frequently.
Then there is the group that gets labeled later. Later childhood or even adulthood. Typically requiring less support. Their numbers are increasing more significantly and the current evidence strongly suggests that they are not the same as the younger group in less severity or such, but a different thing entirely with some characteristics in common.
Lumping with division by level support obfuscates that reality.
And yes the nonverbal child with global if uneven delays may be another group of conditions too.
I’ve wondered about this, too. It seems unlikely to me that all those people have the same condition. They may have some overlapping characteristics. But i suspect that the cause as well as appropriate forms of support, are quite different. I don’t really understand what the catch-all term even means.
The catch-all term for autism describes persistent difficulties with social reciprocity and communication as well as restricted, repetitive behavior and interests. Whatever these different kinds of autism are, they result in the same - to use the medical definition - deficits in communication and repetitive behavior. The difference, and I’m referring specifically to outward presentation, not cause, is in the degree to which these can be observed. The gold standard diagnostic tool for autism is the ADOS, which can be administered across all age ranges (with variations) and which results in a standardized score. It consists of talking to and/or playing with the client in a specific way designed to highlight differences in communication and behavior, including, but not limited to, eye contact, fixation on a certain topic, stimming (repetitive movement,) social reciprocity, ability to use gestures in concert with verbal communication, etc. This score, combined with clinical observation and parent/teacher input, is used to determine the person’s support level.
Someone can be diagnosed at one support level and have their support needs changed over time.
Support levels are relatively new. I believe since 2012. Some clinicians don’t use them, but it’s fairly standard practice right now.
The question of whether we should consider the cause or severity of a disorder in assigning a diagnosis is an interesting one. I’m not an expert of the DSM but I’m not sure that would be consistent with other types of diagnoses. Severity is generally something assigned within the diagnosis, e.g, “major depressive disorder, severe.”
Generally the DSM favors less granularity over more. The DSM is also, relatively speaking, a pretty conservative document, slow to change, and not particularly responsive to the latest research. It’s not going to change based on a handful of interesting studies, it’s probably going to take at least ten years of definitive research and widespread clinician consensus before considering any shift in how it classifies autistic people. When I think about the DSM I don’t think of it as an accurate reflection of scientific reality. I think of it as a way to classify clusters of specific symptoms or characteristics.
Whether that’s the the best way for the DSM to be is open to debate. But that’s what it is.
We certainly do when diagnosing conditions we know more about. We do say, “he has a rash over 60% of his body”. We say, “he has chickenpox”, or eczema, or measles ". We don’t say “she has major hepatitis”. We say “she has hepatitis B”. Even though the basic supportive care for a rash or for inflammation of the liver are similar across different causes.
Very interesting and thank you for that.
I have experience with exactly one diagnosed autistic individual. He’s a sweet kid & we “converse” by text most days.
He’s in his early 20s, socially stunted, low IQ, will need group home level of supervision for life. But he’s been talking from a delayed but still young age and now has a simple job for a real company earning real (albeit low) wages. As a younger kid he had a lot of the classic ASD behavioral issues, stimulation overreactions, repetitive behaviors, etc.
He’s got the conversational skills and interests of an incurious ~8yo, but enjoys being around other people, doesn’t have meltdowns, etc. Thank god for TV & smartphones to keep him entertained. He can cook, do laundry, keep him self clean, get to work on time, call for his own transportation. His overall maturity / responsibility level is about tween to young teen. And that’s where he’s stuck. There’s not much potential for improvement from there; the intellectual disability prevents it. Despite pretty intensive support from birth.
So there also exists what I’d term Level 2 ASD + intellectual disability.
Clearly there’s a lot of ways to be neuro-spicy. Perhaps intellectual disability belongs on a different axis than the behavioral manifestations common in ASD.
Autism is currently in a liminal space, I think, between medical diagnoses and psychiatric disorders. It’s in the DSM but it’s not a mental health problem like most entries, it’s a neurodevelopmental disorder and is often diagnosed by a team of multidisciplinary experts but at a minimum, a developmental psychologist. AFAIK, only a clinical psychologist can diagnose it. But it’s not a psychological problem the way depression or anxiety are.
Should it be considered a medical diagnosis, diagnosed by physicians? I don’t know how medical diagnosis works or how it compares to psychiatric disorders, but the world this disorder is currently conceptualized in is the world of psychiatric disorders. Wanting this one thing to be diagnosed and conceptualized differently than everything else in the DSM is probably a pipe dream, unless we pull it out of the DSM altogether.
I’m not familiar enough with the history of the DSM to know why neurodevelopmental disorders are housed there, as opposed to medical diagnosis. But recognize that a lot of autists are already opposed to autism even being in the DSM much less classified as a medical problem. There’s a vocal contingent of autistic people who don’t think it should be considered a disability at all, just a difference. There is already so so much conflict about how and in what way autism should be classified and conceptualized that we are far away from any kind of consensus, even among very knowledgeable people.
Weirdly, I haven’t seen this strident rejection of the medicalization of ADHD, which appears to be very closely linked to autism. I’ve seen claims that ADHD is just a difference in neurology but I think people with ADHD are much more likely to agree they have a cognitive deficit.
ETA: clarification. Any mental health professional can diagnose autism, it’s just that most insurance companies require a team diagnosis at a special center to be officially recognized and approved for services. And you don’t have to take the ADOS to receive a diagnosis, unless you need it for insurance purposes.
And I’m betting those are all the ones who can function in society. Because honestly, i find it a little offensive to say that about the profoundly disabled autistic people, who need support for all their lives. One of my friends has a severely autistic child, and that basically became her entire life, in a way that rearing neurotypical kids, or kids with what used to be called Asperger’s (which includes one of my children) just isn’t. That’s one of the reasons i think it’s unhelpful to lump all those people under the same diagnosis. Because “neurodivergent” can be usefully thought of as a difference. (Including “mild” autism and ADHD.)
I think that’s because more people with ADHD often find the medical treatments helpful. And no one ever locked up those kids in institutions. (Well, unless you consider prison of young adults… But that’s a topic for another thread.)