originally published September 20, 2013
Part 1: Losing Your Diagnosis?
Part 2: Diagnostic Criteria: Section A
Part 3: Diagnostic Criteria: Section B
Part 4: Diagnostic Criteria: Section C
Part 5: (you are here)
Part 6: Diagnostic Criteria: Section E and Severity Levels
Part 7: Development and Course: Part 1
Part 8: Development and Course: Part 2
Part 9: Development and Course: Part 3
Part 10: Development and Course: Part 4
Good morning, again! I’m enjoying these morning posts. I’m also putting together a book of my essays this week. It will have my two most popular posts from this blog and all the rest of the essays will be new, never before seen, essays. I’m writing about food and eating habits, body image and body issues, what autism means to me, what is “normal” and who is “allowed” to be not normal, how I relate to objects, people, and animals, normalization, independent living, and more.
I’ll post here when it’s ready. It will be for sale on Amazon as a Kindle book (you can get free Kindle readers for just about any device so you don’t need an actual Kindle to read it.) and I hope some of you will be interested in getting and reading it.
In the meantime, back to the DSM-5 series! I am really loving going through this, piece by piece. Today’s section is Section D from page 50:
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
Wow, one little sentence. Some of the other sections were huge and section D is just one sentence. Basically, it’s saying that it’s okay if all the visible symptoms and traits are in your childhood and you have compensated for them now, but you still have to have significant impairment in at least one important area of your life.
This is a rough one to write about because it starts to get into some of the politics of the Autistic community. (The Autistic community is the community of people who are actually Autistic themselves. The Autism community is the larger community that also includes parents and caregivers, professionals, researchers, etc.) Some of the things this sentence touches on will be addressed later in this DSM-5 series because the section on severity brings those topics up again. Some are not explicitly mentioned in the DSM-5.
One thing this immediately brings to mind for me are the ongoing discussions among Autistics about the concept of “functioning levels.” Many prominent Autistic writers have pointed out that if a person is labeled as “high functioning,” often their struggles get ignored and they don’t get as much help as they need. But if a person is labeled as “low functioning,” the expectations others have for them are often equally low and their skills and accomplishments are either ignored or treated as a sort of freakish “splinter skill.”
I finally got some of the help I need, but before I got my aide, I often complained that functioning levels are deadly because I kept getting shuffled from one agency to another and being told by one organization that I was too high functioning to qualify for their assistance but told by another that I was too low functioning to qualify. So things like functioning levels and severity levels (and mental age) are really sticky things in the Autistic community and many of us feel that these things dehumanize Autistics.
At the same time, when roughly 1% of the population is Autistic, there has to be an efficient way to sort through us to make sure that people are getting assistance at an appropriate level, so severity levels and functioning assessments are quite necessary. I think the DSM-5 does a good job with this, but that’s a subject for a couple of days from now when I post the severity tables and talk about them.
Another issue people will likely have with this sentence is the idea that if you have no “clinically significant” difficulties, you’re not Autistic (and a related debate centers around what makes a difficulty “clinically significant.” For example, losing your keys is not clinically significant. Losing your keys several times a day, every day is quite possibly clinically significant. Where is the break point between those two?)
One thing that the layperson can get from this criterion is, again, to withhold judgment. I confess, I have sometimes looked at a fellow Autistic who has held the same job for 30 years and has a circle of friends they get together with regularly, who feeds themselves and keeps their house clean, and I wonder, “how are they Autistic?” This really is a confession, because this is the first time that I have ever publically admitted that I have these thoughts. That is because they are thoughts I am not proud of — it is judgmental and inappropriate.
But I have also noticed that if I get to know that person better, I often learn more details about their life that aren’t so clear on the surface. Like maybe I only thought they were feeding themselves well and they actually often forget to eat or have too much exhaustion or inertia to eat for days at a time and are genuinely but invisibly malnourished while they go about doing their job and keeping their home in order and writing very moving things.
Or maybe they’ve had the job for 30 years but they are seriously held back in their career because they don’t have any friends at work and don’t know how to play the office politics so they have been trapped beneath a glass ceiling all those years and are deeply frustrated to still be doing grunt work so far below what they are capable of because they aren’t given the chance to show what they can really do.
In one case, I was quietly judging someone else’s life only to later learn that they use AAC to communicate rather than speaking! That was an eye-opener! I really can’t judge how difficult or easy someone’s life is, where their challenges lie, or if their autism is “clinically significant” in a casual meeting and certainly not over the internet!
But this brings up something else: if a person actually does develop enough coping mechanisms and learns well enough how to fit in so as to actually live up to that Holy Grail of “indistinguishable from peers,” are they still Autistic? I see claims that someone “outgrew” their autism or that their autism was “cured” or “in remission” and I wonder how a condition that is marked by both structural and functional brain differences that are congential — that is, present from birth — could ever be said to be “no longer Autistic” if they still have the same brain.
And there is the question of whether the person is actually “cured” or has just learned to layer the right behaviors over top of a brain that is still very Autistic. I can understand, with the stigma that comes along with autism, why someone might want to distance themselves or their child from the diagnosis if they have learned how to cover up the autism or their brain has developed to such a degree that they can pass for not-autistic. But I don’t really think those cases are examples of “cures” because what makes a person Autistic (to me) is that they were born with an Autistic brain.
So I think the more correct way to refer to people who have developed those coping and masking skills so well is “no longer clinically diagnosable.”
And that’s basically what criterion D is saying: you can be quirky, you can have some measure of all these traits or have had them in childhood, but if you aren’t having significant difficulty with work or socializing or self-care or any other important area of life, we can’t diagnose you with autism. You might have social anxiety instead. Or you might just be eccentric. Or maybe you actually are Autistic but you are not currently diagnosable.
It is interesting to me that one is required to have significant impairment in order to have the diagnosis. I’m still kind of sensing out how I feel about that. For example, is Temple Grandin still Autistic? She works as a professor of animal agriculture and also as a speaker and writer about autism. She has pretty strong job security and seems to be doing great, career-wise. I have never heard her mention troubles with keeping her house clean or feeding herself. She seems to have friends and colleagues she enjoys and has expressed a disinterest in romantic relationships. She found the medication and lifestyle solutions that addressed her anxiety. She seems to function quite well with no real impairments, right?
But I have met Temple and it was very clear to me that she is very Autistic. It is incredibly obvious when you speak with her. She has worked very hard to get where she is in life and she has built a life that supports her needs, so she is not noticeably impaired in function. And, according to criterion D, that might mean she is not clinically diagnosable as Autistic.
But, come on. She *is* Autistic. Who’s going to argue that she isn’t?
So what does section D mean in a real world sense? I think it is more of a signpost than a hard rule. It reminds the clinician that one shouldn’t go around diagnosing people who are doing just fine. Diagnoses are not political statements — they are tools to help others recognize a person’s particular needs. I have an aide because I have a diagnosis. Without the diagnosis, there was no “proof” that I wasn’t just being lazy and hoping someone else would do things for me. I have a genuine impairment that requires assistance.
But if someone is “functioning” but only because they are barely, desperately clinging on by their fingernails, they really aren’t functioning and they really need some assistance. I would put forth the idea that Temple Grandin functions so well now *because* she was diagnosed as a child and got the help she needed and was able to earn enough money as an adult to build a comfortable world around herself that suits her needs. She doesn’t need a diagnosis now because she has built her world to fit her. She has accommodated herself.
But not needing a diagnosis is not the same thing as not being Autistic.
And maybe that’s the take-away here: don’t judge someone else’s life from a distance and don’t assume that because they seem to be doing really well as an adult they aren’t Autistic and didn’t have lots of extra needs as a child . . . or wouldn’t need lots of extra help if something disrupted the world they have built around them.
An Autistic who really seems to have their life together could be one of the worst hit if a natural disaster occurred because their carefully constructed world got disrupted. Sure, everyone hit by that disaster would be suffering, but the Autistic person who looked “cured” might end up falling farther and suffering worst because they didn’t just lose all their possessions and home like everyone around them but also all the supports and accommodations they had built into their life that were masking their autism.
Diagnosing autism is tricky stuff and that’s why I don’t question other people’s diagnoses. If someone tells me they are Autistic, that’s good enough for me. I don’t need to “fact check” to see if they really are Autistic or not. That would be like asking someone to prove they are gay! That would be ridiculous to me. Someone tells me their identity is one that mainstream society often stigmatizes and I’m going to question that identity? No way.
So that’s it for Section D. We’ll revisit some of this in severity levels but my next post will be the last lettered section in the diagnostic criteria, Section E.
Have a great day! I’m going to go work on that essay book now. I hope your Friday is happy and productive and I hope you are looking forward to a wonderful weekend.