picture of book pages

DSM 5? I’m an open book about this book I’ve opened. [image description: photo of the pages of an opened book]

Autism and the DSM 5: Development and Course: Part 3
originally published October 8, 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: Development and Course: Part 1
Part 8: Development and Course: Part 2
Part 9: (you are here)
Part 10: Development and Course: Part 4

I’ve really been enjoying writing this series. It’s given all of us a chance to look more closely at what’s in the DSM-5, it’s given me a chance to explore related themes that are very important and interesting to me, and it’s given others a chance to process some of the things going on in their own lives. I encourage everyone to look back at the comment sections of previous entries in this series where there are some great discussions of diagnostic issues and issues related to living with autism or helping a loved one with their experience of living with autism.

The last entry has an especially interesting discussion in which a reader shared her concerns for her dear son who has gained and lost speech skills twice now. I would love to see more people enter that conversation with words of support or shared information or similar experiences. I love it when all of you come together and help each other. It makes me feel really good to facilitate a place where those kinds of conversations and connections can occur!

Today I’m going to look at the third paragraph in the Development and Course section of the Autism Spectrum Disorder discussion section of the DSM-5:

First symptoms of autism spectrum disorder frequently involve delayed language development, often accompanied by lack of social interest or unusual social interactions (e.g., pulling individuals by the hand without any attempt to look at them), odd play patterns (e.g., carrying toys around but never playing with them), and unusual communication patterns (e.g., knowing the alphabet but not responding to own name).

When I look at descriptions like this, my first instinct is to think back on my own childhood. I’m sure that’s a first response for my readers who are also Autistic (and maybe some who aren’t) and I’m assuming that parents of Autistic children immediately think about their own child’s early development when they read a paragraph like that one.

Most of my symptoms didn’t really get noticeable until I went to pre-school because at school there were a lot of other children to compare me to. Also, school was much louder, more chaotic, more crowded, and generally more disturbing to me than life at home. But while things didn’t really get serious for me until I was four, there were earlier signs.

I did have social interest — I doted on my older brother. I don’t remember unusual social interactions in my early years but that doesn’t necessarily mean anything because I’m often told that something I did or said was strange or disturbing now as an adult when I had not realized that I was doing or saying anything out of the ordinary at all. So I’m not sure whether I would recognize unusual social interactions from my early childhood. I remember a lot of what, looking back, were very unusual social interactions from age 4 on, but I don’t have a lot of context for understanding earlier behavior. (However, the description does say “often,” not “always.” Similarly, it says “frequently” with respect to delayed language development, but we know that the former diagnosis of Asperger’s that has now been rolled together with PDD-NOS and other former diagnoses into the single category of ASD was noted for having no noticeable language delay.)

I did have odd play patterns, but only odd in retrospect. They seemed normal to me — after all, why would I engage in play that *I* found odd. I lined my dolls up a lot. I did name them all, but I couldn’t remember their names so at one point I wrote their names on slips of paper and attached each name to its corresponding doll so I could remember what I had named them. (Naming one’s dolls seemed very important to me because that was always the first question an adult asked when they saw one of my doll’s: “what’s her name?” so I was trying very hard to be able to have the right answer. I was very concerned with having the right answer for every question.)

After my diagnosis, I spent a lot of time looking back over my childhood, initially with the hope that I could find enough evidence to disprove the autism diagnosis. I didn’t want to be autistic and I fought hard against the diagnosis for a long time before I accepted it. One of the things I hit on was the thought that I had, indeed, been engaging in imaginative play so I couldn’t possible be autistic. After I thought about it for a few more years, I finally understood that what I had thought was imaginative actually wasn’t.

My prime example for imaginative play was that I build an “island home” in my play corner. I built a hut by attaching a sheet to a bookcase and to a toy chest so it angled down like a lean-to. I hauled some baskets in there. My father gave me a beautiful abalone shell that I added to the set. But what was I actually doing? I was making a life-sized diorama. I had read Scott O’Dell’s award-winning book, The Island of the Blue Dolphin, and was captivated by the story of an island girl who had to survive alone after her village moved to the mainland, accidentally leaving her behind.

I reconstructed Karana’s home from items around the house. I tried to emulate as many elements from the story as I could. I would sit in my “whalebone hut” and think about things that happened in the book. But I never made new adventures for Karana. I never imagined new things. My “imaginative play” was entirely imagined by Mr. O’Dell.

My daydreams were the same. I loved the show Gilligan’s Island and I would imagine episodes I had watched, inserting myself into the story. Today, there’s a name for a character like that. People who write fanfic (fan fiction: stories set in a pre-existing fictional universe) who include themselves (or a thinly-veiled version of themselves) into stories are said to be creating “Mary Sues.” I was the queen of the Mary Sues as a child!

People might well have wondered what I was thinking about when I sat, quietly daydreaming. I had many different thoughts, but a common daydream themes were Mary Sues: me on Gilligan’s Island. Me on Bewitched. Me on Lost in Space. I never made new stories — they were always established episodes I had actually seen. My presence never changed the plot or the outcome. I was simply inserted into a pre-existing story, whole cloth.

It took me a long time to understand what “impaired imagination” meant or to accept that I do actually have a different type of imagination from most people. I bristled at the idea that my imagination could be impaired. I am one of the most creative people I know. I knit, crochet, write, compose music, sew. I follow patterns or tutorials and I create new things. I see ways to rearrange things into new configurations that are different, not merely derivative.

I do have a much more difficult time writing fiction than non-fiction (not something shared by my fellow Autistics. I know several Autistics who write terrific fiction.) But I really didn’t like thinking of myself as someone “lacking imagination” at all.

I have since learned that, while I may not be “lacking” something (I am whole and complete!) I do have a different sort of imagination than people who have more mainstream neurologies. The breakthrough for me in understanding the differences in my imagination came when I was learning more about alexithymia (which is a label for a cluster of different but related states, all sharing the trait of having difficulty identifying one’s own emotions.)

I found an imagination self-test when reading about alexithymia and took it. It looks at two types of imagination, spontaneous and constructed, and analyzes whether the test-taker has both or predominantly one or the other. I got an extremely low numerical score, indicating that my type of imagination is almost entirely constructed, not spontaneous. That answered a lot of questions for me . . . but only about me, not about autism in general, because it turned out that many of my fellow Autistics got different scores. I have not yet figured out if my low score and my moderate alexithymia are a correlation — I haven’t had a chance to compare others’ scores on the imagination test to their levels of alexithymia.

When I googled just not to find the test again, I discovered that my friend, Cynthia, wrote a blog entry about taking the imagination test on a different web site that gives statistics for tests based on how many people have taken them and whether the takers are Autistics or not. Her thoughts on the test are quite interesting (and I was excited to see that she used to daydream about Lost in Space, too!) and I recommend taking a look at her blog entry on the topic of autism and imagination and the alexithymia imagination test.

I hope no one is disappointed that I explored this paragraph from the DSM-5 solely in relation to my own life experience as an Autistic. I really didn’t have much to say about the paragraph otherwise (and it’s been a tiring couple of days so I may have missed something obvious I could have talked about.) I’d love to see comments and discussions of this paragraph in light of how *you* or *your children* fit or don’t fit into the traits described.

When I start writing on one of these snippets from the DSM-5, I’m never sure where it’s going to go. This one went to reminiscing about my own life. I also never can predict where comments and discussions are going to go, so if this entry moves you to talk about something entirely different, please feel free to share that, too! As always, everyone’s comments will be approved (although sometimes there’s a time lag) except for anything that is attacking or abusive. You don’t have to agree with me or with anyone here, but you do have to play nice. Thanks!