originally published September 30, 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: Diagnostic Criteria: Section D
Part 6: Diagnostic Criteria: Section E and Severity Levels
Part 7: (you are here)
Part 8: Development and Course: Part 2
Part 9: Development and Course: Part 3
Part 10: Development and Course: Part 4
Okay, I’ve had a nice rest and I launched my new book (so exciting!) so it’s time to get back to the DSM-5. I know I’m skipping around a little bit, but I want to go through the commentary section about Development and Course of Autism next. This section has seven paragraphs and I’m going to take them one by one. So here’s the first paragraph in that section:
The age and pattern of onset also should be noted for autism spectrum disorder. Symptoms are typically recognized during the second year of life (12-24 months of age) but may be seen earlier than 12 months if developmental delays are severe, or noted later than 24 months if symptoms are more subtle. The pattern of onset description might include information about early developmental delays or any losses of social or language skills. In cases where skills have been lost, parents of caregivers may give a history of a gradual or relatively rapid deterioration in social behaviors or language skills. Typically, this would occur between 12 and 24 months of age and is distinguished from the rare instances of developmental regression occurring after at least 2 years of normal development (previously described as childhood disintegrative disorder).
First sentence: yes, age and pattern of onset are important. Age is crucial, since autism is a congenital condition (in other words, something you’re born with.) As we talked about here before, though, autism often goes unnoticed in earliest life. The commentary attributes that to the severity or subtlety of the delays and symptoms, but for those from my generation there is another element to that. My symptoms were quite noticeable. I spent most of my childhood in therapy. It was quite obvious that *something* was going on. If I had been born 40 years later than I was, I surely would have been diagnosed Autistic in childhood.
But many in my age group were not recognized, even when our symptoms were not subtle, because there wasn’t as much knowledge back in the Sixties and Seventies as there is today. Yes, obviously some people got diagnosed properly back then — for example, Temple Grandin or Daryl Hannah. But most of us were just confusing to our parents and the professionals who examined us. This is because the understanding of how autism manifests was more limited back then, not the full spectrum we have today. For some examples, see this British article from 1966 or this 53 minute documentary from 2003 about parenting a child with autism in the 1950s and 1960s. (The documentary needs a trigger warning to Autistics for talk of a child being “gone” or “lost” after signs of regressive autism appeared. And also a trigger warning to parents of Autistics for accusations of parents as causing their child’s autism.)
Half-way through the 2003 documentary, we meet a clearly Autistic adult whose mother says that the doctors refused to diagnose him back then because the family was African-American and not upper-middle class and highly educated. Fascinating. The way you see autism depicted in the 1960s will be very familiar to you but you will also recognize that it’s only one aspect of what we understand autism to be today.
The documentary will also show why people of my generation did sometimes get diagnosed but their parents rejected the diagnosis — since autism was blamed on the parents back then, particularly a “Refrigerator Mother.” So, often, a person my age who was struggling and was diagnosed with autism ended up removed and brought to a new therapist in a sort of “diagnosis shopping” enacted by parents who couldn’t bear to accept the blame that was so unfairly being leveled at them for their child’s difficulties.
Something else interesting to notice with the Refrigerator Mother documentary: the children were all very similar but the adults they grew up to be are so different. I find that fascinating and I think it indicates how much more study we need into autism across the life span so that we can understand outcomes better and maybe even eventually predict outcomes.
The rest of the paragraph: I have talked to parents who claimed they knew “something was up” with their child (who later turned out to be Autistic) from the day the child was born. But most children aren’t spotted until they are a couple of years old. Some slip through the cracks a little longer but almost all of us displayed clear symptoms by the time we were school age.
One last thing to note: the commentary says that it is rare to appear to regress after age two, but it does happen. I have noticed that the loss of skills, ability to cope, and functioning can happen at any age. All those who regress show signs of autism from the beginning, but some people go through a so-called regression as children, some at puberty, some in mid-life, often due to the stress and burn-out associated with a life-time of struggling to “fake it” as much as possible. The goal of normalization seems great on first glance — the goal of making an Autistic person “indistinguishable from their peers.” But what more and more people are starting to realize is that normalization comes at a price.
It takes a great deal of effort to keep up a façade of normality and it wears on a person over time. I have lost some of the function and coping I used to have in my twenties because of the exhaustion and burn-out of trying to “hold it together” all these years. I have struggled to try to “look normal” in public for so long now that it’s a habit. I work to suppress my more unusual behaviors and only let loose when I am alone and can rock, pace, tic, spin, and otherwise stim as much as my body needs me to.
Trying to hold it together is hard work and I have depleted myself over the years. I find it very difficult to go out in public at all and hard to stay out in public for long stretches of times. To some, I might appear to have become slightly “more autistic” than I used to be and it might even be seen as a regression, but the skill, coping, and energy losses are solely due to the great toll that attempts at appearing normal have on me.
I think many of the cases of what is called “late regression” are just as likely to be cases of “burn out” where a person had tried to function like everyone else and finally couldn’t hold the act any longer.
So there’s the first paragraph of the development section! I’ll be back next time with a discussion surrounding the contents of the second paragraph of that section. There is still a lot of DSM-5 material to work through, so I think this blog series will be going on for quite a while. With that in mind, I hope you all are still enjoying it! I know I’m enjoying thinking and writing about these things. Thank you for reading and thank you in advance for any comments.