originally published September 19, 2013
Part 1: Losing Your Diagnosis?
Part 2: Diagnostic Criteria: Section A
Part 3: Diagnostic Criteria: Section B
Part 4: (you are here)
Part 5: Diagnostic Criteria: Section D
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! I’m going to look at the section C of the diagnostic criteria today. I originally thought I was going to put C, D, and E all together but when I realized I’d already written a thousand words about C, I decided to take them one at a time after all. After that, we’ll move on to the table of severity levels and the discussion of severity levels, then on to the rest of the discussion section in the DSM-5.
This is from page 50 of the DSM-5, in the section titled “Autism Spectrum Disorder: Diagnostic Criteria 299.00 (F84.0)”
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life.)
Let’s unpack this.
This one is HUGE! The DSM is acknowledging a couple of things here. They are acknowledging that a child may seem “just fine” to their parents (although there are also plenty of parents of Autistic children who say they knew something was different almost from the day of birth!) until they go to school and start interacting with their peers and having more demands placed on them.
I was one of those children. There were definite signs before school. For example, I learned to read somewhere around 2 or 3 years of age (hyperlexia) and began reading obsessively afterwards (and for the rest of my life. I actually have a panic attack if I think I will be stuck with nothing to read, so I have a nice stack of books waiting for me to read them because it gives me a sense of security and safety to know I have more reading material available than I could possibly read my way through before I buy more books.
The internet also helps me feel safer about not running out of reading material. (I am straying off topic a bit, but one of the worst things adults used to do to me as a child was take away my books to try to force me to go play with other children.) I also had issues with spoken language dropping in and out and I remember my mother many times telling me to use my words, saying that she knew I knew how to speak and she wasn’t going to give me the food or drink I was pointing to until I said with words that I wanted it. Very frustrating.
But despite those “quirks” and other similar ones, and despite the concerns they raised in my parents (my father once told me it was kind of creepy to see a child so tiny, and barely able to speak her own words, yet able to read the newspaper and encyclopedia out loud, rapidly and perfectly) I was considered a normal-but-bright child until I went to school and the really noticeable behaviors began: hiding under the table all day and biting anyone who tried to coax me out, for example. Or coming out for art time but refusing to paint or color with anything other than black.
So it was at age 5 when I first began to visit a psychiatrist in an attempt to understand what was wrong with me. In my own case, the autism was masked by my brother’s leukemia — he was diagnosed when I was 3 and died a month and a half before I turned 7. And there wasn’t as much understanding of autism back in 1972 when I first began visiting professionals, so for most of my childhood all my autistic traits were assumed to be signs of grief.
The other thing that is pretty huge about section C is that it points out that we develop over the years, that autism manifests differently along the lifespan, and that many adults have learned how to fit in better. I’ve had people say I can’t be Autistic because I understand and use colloquialisms and sayings like “don’t count your chickens before they have hatched” without getting puzzled about what chickens have to do with the plans I am making about my future.
I know what that saying (and many others) mean because at some point, in my childhood, I *was* confused about what chickens had to do with things or why someone said I shouldn’t put all my eggs in one basket when I didn’t have a basket or any eggs. I asked — or someone saw my confusion and explained — and I learned. I filed it away and when I began writing, I found I enjoyed using these strange sayings and other types of slang and casual language because I find them colorful and expressive.
I “cracked the code.” But I still get tripped up by these things! Last year I was exposed to the saying “let a thousand flowers bloom” and I had to ask for it to be explained to me. It didn’t make sense and I still find the phrase confusing, but I know what it means now. Knowing what these abstract sayings mean doesn’t mean I’m not Autistic any more — it means I have the ability to learn and change and grow. It is so terrific that criterion C mentions that trait of Autistic people! We are not static! We have a developmental delay but not a developmental halt!
We can learn and change and grow and some of us may even change so much that we don’t “look Autistic” any more, at least to some people, some of the time. On a good day, I can go to the grocery, buy some food, pay for it, and leave, and no one realizes that they were just shopping next to an Autistic woman. On a difficult day, there is no way I can hide my differences and I see the stares and hear people asking each other questions about me. On a really bad day, I don’t even go to the grocery, even if I’m out of food.
But the take-away from C is that you should not try to judge whether someone is Autistic or not by just looking at them without knowing them deeply. You might be seeing them on a really easy day or in a really easy situation. You might be looking at a child in a setting that does not offer too many demands or too much challenge. You might be looking at an adult who has learned ways to be more invisible and look more like everyone else. Or you might be looking at someone who is expending a huge amount of effort.
The French writer, Camus, once wrote: “Nobody realizes that some people expend tremendous energy merely to be normal.” He could easily have been talking about a lot of Autistic people! That “good day” trip to the grocery store I described? It is absolutely exhausting to me. Yes, I go in and buy 5 or 10 items and make smiles and chit-chat and leave a good impression behind me. Then I go home and collapse with the exhaustion of the effort.
So I have to give another huge check mark to the DSM-5 — two check marks, actually — for criterion C. This section of the diagnostic criteria recognizes that we change and develop and that we can look different at different times in our lives or in different situations. I have some friends who say they believe I am Autistic but they are confused because they don’t see it. That is because they have only seen me within my “safety zone” and on “social days.” The moment they see me outside of the nice, shiny bubble I work hard to keep around myself and my life, they immediately understand.
My partner has seen me far, far outside that bubble and says there is no doubt in his mind that I am, indeed, Autistic. (And part of why I love him so much is that not only does he understand the hard things about autism, but he sees the beautiful things about it, too, and says that he wishes he could take away the struggle but he doesn’t wish he could take away the autism because too many of the things he loves about me are autistic traits.)
So, just as much as I want you to remember not to judge the family you might see with the exhausted mother desperately trying to run interference on the screaming, crying child who seems “too old to behave that way.” I also want you to remember not to judge the person who has identified themselves or their child as being on the autism spectrum yet that Autistic person seems “too normal to really be Autistic.” If you only see one slice of an Autistic life, you don’t have enough context to make any sort of judgments, good or bad, about that life or the family, friends, and environment that person lives their life among.
I will be touching on these issues a lot more tomorrow when we look at section D. There is a lot to say about that criterion, too!
Until then, may you have a lovely day and may you always be kind to and appreciate those you love. And may you always be sure to put yourself on that list of loved ones you must remember to treat well!