And do you think that change has been a net benefit?
Some context you’re probably aware of that others may not know: parents of children with severe disabilities have almost no support in the US. Children’s issues are often blamed on the mother and in a lot of cases Dad checks out when kids start showing signs of a serious disability. I am generalizing here. But the reality is there is usually one caregiver, usually Mom, who is lucky if she gets a half day to herself once a month. Mom who is on her own to deal with severe behavioral issues, sleep disorders, helping with toileting, their kids smearing shit on walls. I know several parents of level 3 kids. It takes 8 years on average in my state to get financial coverage for medical bills for an autistic child and all support ends the minute the kid turns 18. I once met a couple with a level 3 son who at age 22 went spontaneously blind, causing all his hard-earned progress to decline as he slipped more and more into despondence and his parents had to watch this.
The problem is not the person with a disability. The problem is a society that does not adequately support people with disabilities or their caregivers.
There are absolutely mothers looking for a cure, sometimes doing dangerous and terrible things to their children, because 1) they don’t want to be to blame for their child’s disability and 2) they aren’t getting any support from anyone and when they aren’t actively suicidal they are desperately trying to get out of a situation of unceasing labor for little benefit and the reality that their kid isn’t getting the support they need.
If you want to understand what that’s like, go hang out in r/parenting_autism for a while.
There is a bias even in research against funding projects that may benefit level 3 kids because of internal politicking. RFK Jr., idiot and monster that he may be, registered as a source of hope for these parents because nobody else was listening to them. According to the autistic advocate I know, even Autism Speaks now has a board dominated by Level 1s.
So where do they have to go? Hyperbaric oxygen chambers and snake oil. The root cause isn’t stupidity; it’s desperation.
What a crazy coincidence that I just learned about mine last Tuesday and I happened to open this thread.
Formally diagnosed? No, but my psychologist said as much as she could without crossing the line, based on all of our sessions.
At 59, what do I have to prove by getting a formal diagnosis.
She gave me the key that unlocked so many mysteries in my life.
I have been calling this “The Knowledge”, likening it to how the London cab drivers spend a couple of years memorizing every nook and cranny of London before they take the test for their license.
She handed me “The Knowledge” that explains so much.
And there is clearly a wide range. For me, autism was absolutely well suited for nuclear power qualification in the Navy, perhaps the most difficult thing I have ever done, but the rigid framework and crisp training fit my brain perfectly. Other things definitely don’t.
But so much of it sucks. Now I have a name for that suck. And I can explain many behaviors to my wife in a way that she can understand.
59 years of finding workarounds for things others take for granted.
I’m also face blind, and I found there is about a 30% correlation between the two.
So lots of effort spent in ways to do what others do effortlessly.
And nobody knows that when I’m playing bass up front and gently rocking back and forth as I play, I’m doing everything I can to keep the motion in time with the music so everyone thinks I’m just grooving to the music.
I think this is a really clear benefit of diagnosis. When you can get to a point where your partner understands and no longer takes some of the challenges you have personally, I think it can make a big difference in the relationship.
My own husband has said he lets a lot more go than he would otherwise now that he knows I have ADHD. And I’m not talking about using it as an excuse not to try. I try my ass off. But he knows that I’m trying and when I make mistakes, he gives me grace.
I agree there’s a fine line to walk between wanting to be given some grace and wanting to be accommodated for everything. My husband works with a lot of kids who have challenges in school due to ADHD and autism. His position, which often ruffles some feathers, is that not all accomodations are helpful. But if he believes an accomodation will be helpful, he will advocate like hell for that child.
A simple example: now I can explain to my wife why taking our grandson to a petting zoo caused me anxiety for a few weeks before the day came. I even got her to put it off for a week or two. So much over analysis and brain power wasted on stuff nobody else has going on in their head.
It’s just a petting zoo!
And we had an excellent time.
Ha, yeah… it turns out the vast majority of my friends are one or the other. We don’t identify as autistic or ADHD (though many of us are diagnosed) so it’s not any sort of “special” group, but I do think we seem to attract one another.
My childhood wasn’t nearly as terrible as yours, and there were some good things about it, but I would say that there were definitely a lot of not-great things about it. (My mom married very young, was isolated in many ways, didn’t have a great support system, and had a ton of generational trauma thrown in to boot. And is not an emotionally aware person.) As a result, when I had kids, I, like you, did a lot of thinking about how not to do the painful things that my mom did. Interestingly, as far as I can tell, my husband’s parents were awesome, but he has often not thought about the specific kinds of things I’ve thought about, and he hasn’t done the kinds of parenting research I did as a matter of course because I knew I couldn’t rely on how I was raised. (Even more interestingly… his mother, who was amazing, also came from a not-great household, and I really think she went through the same process of figuring out how to make her family work better than the one she came from.)
Though it’s also true my daughter is almost exactly like me, so 90% of the time I can ask “how would I have liked my parents to handle this when I was her age?” and it’s the way to handle her, which is an advantage I have over my husband, ha. (The other 10% is a certain kind of anxiety that I just never had but that is a lot more like he reports having grown up.)
I know a few level 3 parents. It sounds so, so hard. Thanks for writing this.
I agree there can be an excess of glurge around autism discourse, in maybe a well-intended effort to make people feel okay about what really ought to be considered a “normal variation” of human ways of being. You are to be commended for not getting sucked into the glorification side of the fringe, but it’s not great to tip over to the opposite pole of self-hatred.
Autism is “okay”. Neither good nor evil. Both normies and autists are first-class citizens, deserving of dignity and consideration, who bear equal responsibility for figuring out how we’re all going to share a world together.
It is a very good question.
I’m not sure? Probably more harms than goods but I don’t know what other paths would have resulted in?
There needed to be an official recognition of the broad spectrum and any lines drawn would by necessity be both arbitrary and fuzzy. All the assessment tools in the world don’t change the fact that these are ultimately subjective calls.
And I am not sure that all of these adults given the diagnosis can actually provably meet the current definition? Which does not mean it isn’t accurate just following strictly hard to meet the criteria as an adult?
For example - a required criterion of the definition is that the symptoms were present in the early development period. The individual, even parents, recalling their toddler and preschool years function multiple decades later is obviously very subject to motivated recall bias. Yeah I struggled socially in preschool? I obsessed over trucks? I doubt early childhood histories are frequently seriously scrutinized.
Using the definition it is really unclear to me how some can both state they meet the definition AND it is their superpower when the definition requires significant impairment. Same brain processing style without significant impairment does not meet the criteria. That’s then normal neurodiversity. And where exactly does “significant” get drawn?
I am a broken record having said this before: there is value in appreciating the diverse flavors of normal brain processing and each of their positives and negatives; there is harm in pathologizing every flavor variation; and there are levels of individual flavor intensity, if this makes sense, that are disabilities within current social structures, maybe most social structures across cultures and time, but maybe not all. Even it is all the same flavor, and would be not a problem if only the sociocultural environment was different, it is, as you point out, problematic to use the same word for all. Especially since the same flavor can come from different things.
But it is the nosology we got.
My husband has a very large family. When my son was diagnosed we were referred to a distant cousin who has a level 3 young adult son. The mother was the child of an actual billionaire. Do you think he helped financially? He did not. 300 extended family members. Did a bunch of relatives step in? They did not. We visited.
We felt like Interlopers. Her friends were the few people in her life who directly understood her experience because they were in the same boat. We both had autistic kids but we had nothing in common.
My husband’s grandmother, bless her a thousand times, publicly excoriated that woman’s father for not being more supportive. My husband’s family has been wonderful to my son.
A colleague of ours has two level 3 kids and her husband grows less interested in contributing by the day. (Some Dads do step up, and I’ve seen good Dad representation at therapy pickups, so I’m not discounting that.) He’s autistic too and feels like it’s too much for him to deal with.
She never made us feel like interlopers. But when I told her my son was into math, she said wistfully, “I wish I knew what my son loved.”
Ouch! That must be really rough.
This comment is worth pulling out and highlighting. It is a real tension.
On the one hand the broader the net, the more lumping of more under one name, the more diversity of etiologies that get caught in the net. That heterogeneity definitely makes it hard to study causal mechanisms and effective approaches because so much so different is being called the same thing. Your point. Well made.
The other side though is that previous splitting didn’t map out too well to etiology: the previous subtypes did not split in ways that nature honors? That is not much help either. False splits may be worse?
Found this and abstract even expresses it well:
expansion of diagnostic boundary and evolving nosology of autism reflects clinical reality, including increased recognition of autism-related disabilities and support needs of individuals and families. It also evolves with the acknowledgment of the transdiagnostic nature of shared mechanisms underlying the phenotypically overlapping neurodevelopmental and psychiatric categories and dimensions alongside autism (eg, intellectual disability, attention-deficit/hyperactivity disorder, anxiety, executive function). This change inevitably comes with fuzzier diagnostic boundaries and markedly elevated heterogeneity. Autism, as we understand it today, is not a single spectrum. The more accurate concepts of “autisms” or “autism plus” comprise several spectra of characteristics that carry multilevel heterogeneity across etiology, neurobiology, developmental mechanisms, lived experiences, and behavioral presentations, despite the shared commonality at the 2 high-level constructs as per the current behavior-based definition of autism in DSM-5 and ICD-11 (ie, social-communication difficulties and restricted/repetitive behavior). …
The longer term project has to be to split but to split in ways that are data driven and biologically grounded. Which are TBD.
I have to admit that you do have a point. Movies like, “The Accountant”, represent a genre that puts Autism in a very positive light. For every autistic savant who is a genius in one area or another, there is a host of others who are very emotionally ill and dysfunctional. Still, I’ll gladly take the current view over the general attitude that used to prevail, which viewed autistic people as"retards" or “crazy” or whatever.
In education, we deal with “special needs” students, usually some form of autism. Through that, I’ve learned that autism can present in a host of different ways, so one size doesn’t come anywhere close to fitting all.
I’m certainly emotionally ill (but, on the surface, relative “normal”) and I am somewhat dysfunctional. I am functional enough that I was able to get a university degree and serve as a naval officer for 30 years. However, that happened despite then-undiagnosed autism and conscious masking.
The greater damage, however, was to my emotional life (read: love life, in my case). I’ve been married for 35 years and have, at times, been a real shit to my wife, because of my difficulties in reading social cues etc. I also can easily list ten different women, prior to my marriage, who I have either hurt, confused, or pissed off, for the same reason.
I have, in the past, only had one real girlfriend of six months’ duration; the others were basically variations of one-night to one-month stands, most these were torpedoed by my misreading of how they actually felt about me. Of those, there are two or three to whom I could sincerely apologize if they actually remembered who I was.
I did decide to reach out to the six-month former girlfriend - from 38 years ago - (she was the only one who I could definitively find online). In this case, it was an extremely positive experience, for both of us, I believe. We had a lengthy chat via Facebook Messenger and she expressed, after I asked, that she would enjoy maintaining a connection in FB and, should my wife and I go on vacation in the area, meeting us.
To some extent, getting my diagnosis was like a coming out of a coma or surfacing after a long amnesia episode. I can look back at the pre-diagnosis years as wasted, or someone else’s years.
Oh gosh that all seems so hard. (And we are so lucky that our kids have things they love and that they are really good at. Not even all level 1’s have that.)
I honestly don’t know how I would deal with a level 3 kid, much less two of them. Don’t know about my husband either. I like to think we would step up but I strongly suspect that between us we don’t have the mental and emotional resources to do that.
I don’t want to overstate my case too much. I’m sure not every caregiver feels like they are going through hell. It depends a lot on the support you get. Which is kind of the point I wanted to make. You can have thriving families even when one family member has a severe disability if the proper supports are in place.
My husband and I have a lot of emotional support but limited logistical support. My FIL flew in for a month to be there while my son was having surgery. He took him for sleepovers twice and it was the first time in six years my husband and I had stayed overnight by ourselves. I wanted to party but we were so tired. My husband worked as long as he could stand and then we played video games and went to bed. But we’ve never had that and it was so nice. His Dad has promised to return in October for more sleepovers - I can’t wait!
I’m fortunate that I have lot of work from home flexibility so when things come up, I can usually accommodate. But for getting the vast majority of things done, it’s me or my husband. Just us. If my son had higher support needs that would certainly be the end of my job.
My 13 year old autistic kid with autism is here, and in a reasonable mood so I asked the question:
Would your rather be referred to as a “person with autism” or an “autistic person?”
They replied:
What? What’s the difference? I don’t understand. Why would I care?
I explained about person forward and identity forward, and they responded with:
I still don’t understand, why does it matter? How do you pronounce Agamemnon’s home?
…I don’t know. I only have a small sample size but I wouldn’t be surprised if most of them do feel like they’re going through hell, even if they put a good face on it. I suspect it’s a little bit winning the lottery to have both that much emotional and logistical support. I know two parents well enough to get a little insight – in both families one has a full-time caregiver role, and even then everyone is always really close to burnout, I think. I guess in that position we could maybe have moved nearer family… but then we’d have more logistical support and less emotional support.
Quite a few people with autism, especially the level 2 or 3 people, have other things wrong with them, and the autism is just a symptom.
I have a relative who has two kids who have been diagnosed with autism; the level 1, her oldest child, was diagnosed after his half-sister got a PDD-NOS diagnosis. We knew something was wrong with her as a toddler; my brother said that his older daughter had better social and verbal skills at 16 months than this girl had at 4 1/2 years, and his younger daughter is a level 1 herself, something I actually suspected long before she started kindergarten. “Level 2” is currently in supported employment, and we all know she will never live independently. “Level 1” looks normal, whereas “Level 2” is very short, and obese (I have known other people with autism like that, and I suspect that they share an as-yet-unnamed syndrome).
The mother is divorced from both fathers, but NOT BECAUSE OF THE KIDS. Oh, we all knew they were going to get divorced before they got married, especially “Level 2”'s dad, but he’s actually involved in her life. “Level 1”‘s sperm donor is completely out of the picture and has been for many years, which was the kids’ decision (he has a brother) and TBH at one point during their divorce, she was thinking about playing the sexual abuse card, but really, even if the kids had totally been his “type”, he wouldn’t have been interested enough in them to even think about abusing them in the first place.
I’m not sure where to even begin with that comment.