Author: unstrangemind (Page 5 of 6)

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

Index
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: Development and Course: Part 3
Part 10: (you are here)

After a pause to blog about other things, I’m back with some more examination of the DSM-5 diagnostic criteria for autism and related discussion points. I’m still working my way through the Development and Course section, which has seven paragraphs. Today, I look at paragraph four:

Deafness may be suspected but is typically ruled out. During the second year, odd and repetitive behaviors and the absence of typical play become more apparent. Since many typically developing young children have strong preferences and enjoy repetition (e.g., eating the same foods, watching the same video multiple times), distinguishing restricted and repetitive behaviors that are diagnostic of autism spectrum disorder can be difficult in preschoolers. The clinical distinction is based on the type, frequency, and intensity of the behavior (e.g., a child who daily lines up objects for hours and is very distressed if any item is moved).

The reference to deafness is based on our reputation for not responding to our name when it is called out. I think the most common reason for this is that we can get so focused in on what we’re thinking about or looking at that we close off the senses we aren’t using. Or, if we’re using our hearing to focus in on something, it’s hard for something else to break through to us. We tend not to have the same kind of sensory filters that non-autistic people have, so many of us don’t have the “cocktail party effect”  that makes voices stand out to us against a background of other sounds. I have seen research that tries to claim that human voices are “less important”  to us than other sounds, but I don’t think that’s a completely accurate interpretation for how we respond (or don’t respond) to voices.

The article I linked to claims we aren’t “motivated” by human voices. I think they are mixing up cause and effect and the truth is more likely that we aren’t as “motivated” by voices because we don’t hear them as well. On top of everything I mentioned in the previous paragraph, many of us also have some amount of CAPD (central auditory processing disorder) which seems to most strongly affect cognition in the range of human voices. I know that I can listen to music with a finely-tuned musician’s ear and hear every little nuance of sound but someone speaking can get very garbled very quickly. I’m not so good with telephones but can usually do well in a one-on-one conversation on Skype with a headset because the sound quality is better and always coming straight into my ears. In the open environment of a room, my hearing ability quickly degrades, especially if there are multiple people speaking at once or a noisy environment like  a restaurant with lots of piped in music, dishes rattling, etc.

I have surprised people when I have been sitting in a restaurant and started pointing out sounds to them — naming the song playing over the speakers above (“I didn’t even hear music at all!”) the sizzle of the grill in the kitchen (“oh! I hear it now that you point it out. But it’s so faint! How did you hear that?”) — yet I struggle to understand the speech of my dining companion sitting right next to me. I have no auditory filters — I hear EVERYTHING, all at once — and I have CAPD, so speech gets mixed up. (Think of CAPD as being something similar to having dyslexia of the ear.)

So, yeah, I probably have less neurological “pleasure reward” from voices, too. Even though I love the rich, chocolate sound of my boyfriend’s voice. Even though I can often identify people by their voice alone (a nice compensation for being blind to faces.) I’m not less motivated by voices, I just have a really hard time hearing and understanding the darned things!

So I suspect the actual issue with appearing deaf and not responding to hearing our name called is simply that we really don’t hear it. Some people seem to have a hard time understanding how our sensory perceptions work. It’s hard to fault them for that, since that ” how”  is actually a very individual thing. There are some commonalities, yes, but the overall pattern of hyper-sensitivities, hypo-sensitivities, changing sensitivities? That is excruciatingly individual. Every single thing I ever say about how my senses take in and interpret the world? There are Autistic people just like that and there are Autistic people not like that at all. Take me as a general guidepost but not a perfectly representative map.

Again, we see a mention that autistic behaviors can become more apparent in the second year of life. This is significant because it correlates with some vaccination times and could cause confusion in people who believe that autism is caused by vaccinations. The amount of change can be really dramatic, though. Some Autistic kids gradually reveal their autism as they grow and don’t make milestones on the same timetable as their age peers. Other Autistic kids really do change a lot, though. I’ve seen the video and photographic evidence: before age two (or so) the child is speaking, smiling, laughing. After age two (or so), the child no longer speaks, no longer smiles, and exhibits a marked loss of emotional affect. Science still has a lot of exploration to do before it begins to understand the development and course of autism.

When I look back at my childhood photos, I see myself laughing and smiling at age one and two but mostly deadpan, sullen, mournful afterwards. In my case it’s really hard to determine what’s what, though. I definitely became less bubbly when I started school because of the stress of it. The further along I got in school, the more stressful it became and the more my default affect became that of a dog that’s been kicked one too many times. I also had a brother who spent most of my childhood dying and completed the task just before I turned seven. So it’s impossible to look at my childhood facial expressions and determine what might be a sign of autism and what is just a general sign of a miserable childhood.

I find it interesting that now that I am an adult, I frequently get asked what I’m angry about or what’s wrong when I’m feeling calm and peaceful and happy. I am definitely a sufferer of “Bitchy Resting Face.” Either my face developed the habit of looking unhappy all the time (except when I’m laughing or when I’m paying attention to making my face look pleasant) as a result of years of suffering or I really do have affect issues and my default, relaxed, no-affect face looks gloomy to others who are so accustomed to all faces having stories written on them that they are still trying to read mine even when it’s just a blank page. Or I could just have, you know, Bitchy Resting Face.

Another point the DSM-5 makes is that many of the repetitive practices of autism are common to all small children. This is an echo of what I (and many others) are often saying: that autism is not so alien. The things we do are mostly things all people do. We just do them more often and with more intensity. My sister is not autistic. When she was about two years old, she memorized every commercial on television. She is quite bright so she only needed to hear them once to have them completely memorized. She would gallop through the house on all fours, pretending to be a horse, singing commercial jingles at the top of her lungs. If you said something that had two or three of the words of a song from a commercial in a row, she’d start singing the whole jingle.

My sister was deeply obsessed with television commercials and repeated them all day long. But for a two-year-old, that is normal behavior. I used to know an Autistic boy who behaved the same way at age twelve. He memorized commercials and entire television and movie scripts. Almost everything he ever said was a line from a movie. The technical term is echolalia, but when you read about echolalia, so much of the literature claims that the people engaging in it are not making sense and are just randomly speaking nonsense. In my experience with “Kyle,”  that was not the case at all.

Kyle was always communicating when he repeated movie scripts. If you looked past the fact that someone else had written the words he was using, you could clearly see that they were his words — he had made them his own. And he was always matching quoted phrases to the situations he was in. For example, if you were serving him at Thanksgiving and asked him if he preferred breast meat or dark meat he might answer by quoting Freddy Krueger from the horror film, “Freddy vs. Jason”:  “How sweet! Dark meat!” (In the creepy Freddy voice and everything!)

Not everything Kyle said was so easy to interpret as that, but every quote he recited had meaning for him, regardless of whether those of us around him could accurately interpret it or not. All I can say about researchers and other professionals who claim that repetitive movie quoting is random and pointless is “what we have here is failure to communicate — some men you just can’t reach.”  And, in case I’m not being clear the failure is on the part of the professionals. The “echolalic” is doing just fine . . . for anyone who is willing to really listen and presume competence and communication.

So there’s my take on paragraph four. I’ll be back with the next paragraph and on through the rest of the DSM-5 entry. I will probably be be returning to this DSM-5 topic (with interstitial side-tracks on other topics, including the upcoming Autistics Speaking Day and Autistic History Month essays) throughout the rest of the year because there’s so much in there and it’s so fascinating to me. I hope these ramblings are helpful to you, too.

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

Index
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!

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

Index
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: (you are here)
Part 9: Development and Course: Part 3
Part 10: Development and Course: Part 4

I’ve been very tired the last couple of days and generally having a hard time, so I apologize for taking so long to get to this post. Don’t worry, I’m still very into this series and very excited to be writing about this topic.

Paragraph 2 in the Development and Course section of the commentary in the autism spectrum disorder entry of the DSM-5:

The behavioral features of autism spectrum disorder first become evident in early childhood, with some cases presenting a lack of interest in social interaction in the first year of life. Some children with autism spectrum disorder experience developmental plateaus or regression, with a gradual or relatively rapid deterioration in social behaviors or use of language, often during the first 2 years of life. Such losses are rare in other disorders and may be a useful “red flag” for autism spectrum disorder. Much more unusual and warranting more extensive medical investigation are losses of skill beyond social communication (e.g., loss of self-care, toileting, motor skills) or those occurring after the second birthday (see also Rett syndrome in the section “Differential Diagnosis” for this disorder).

I think this paragraph is especially interesting because there has been a lot of debate in the autism community about whether regression actually occurs or whether something else is going on, for example, a developmental delay causing slower progress that only starts getting noticed when a significant number of milestones are missed.

I also think some people have a lot invested in the “regression vs. slower development” argument because of how it feeds into the vaccine argument. Regression is often seen as evidence to support the vaccines-cause-autism theory because the typical age of regression and the age of lots of vaccines and boosters tend to coincide, making lots of parents feel that their child was just fine until s/he got the vaccines.

But with the DSM-5 declaring that regression is a genuine thing that actually occurs, it weakens the vaccine argument because so many of those children who appeared to be having an abnormal regression when they got their shots turn out to have been having a normal (for autism) regression that just happened to be at the same time as the shots.

For a long time, I was undecided as to where I stood on the issue of autistic regression as far as whether it was something that actually occurred or something that appeared to occur because a child was developing slowly and it took a number of months before the divergence of the Autistic child’s development was noticeable in comparison to the non-autistic children’s development trajectory. (I never accepted the vaccine theory, even before Wakefield was discovered to have lied about his data and lost his license to practice medicine as a result of it.)

What convinced me that regression is a real thing was getting to know two different Autistic people who have fallen into the category described in the last sentence of this paragraph: regression after age two. Both people I know had significant autistic regression in their teen years (and both were repeatedly accused of being frauds because regression after age two is so rare. So I am glad to see the DSM-5 acknowledging that late regression can, indeed, occur and hope this helps my friends when they are criticized for not being able to do as adults many of the things they could do as pre-teens.)

There is scientific evidence of late autistic regression before the DSM-5 and it is probably some of that research that informed the committee that made the decisions for the ASD entry and commentary in the DSM-5. The big one I always come back to is a 2000 article by Lorna Wing and Amitta Shah in The British Journal of Psychiatry. The article is titled “Catatonia in autistic spectrum disorders” and it discusses a phenomenon the authors observed — a small percentage of Autistics develop increased catatonic behavior and apparent loss of skills around age 10 to 19. Some of those who fit this profile were previously diagnosed with Asperger’s Syndrome, indicating that the change in observed behavior can be quite large in these cases.

The two people I know who fit this profile (and fit it uncannily well, I should add) do not like the word “regression” to describe their observable changes. I agree with their reasons for displeasure with the term, but will continue to use it for this blog entry because it is the word used in the DSM-5 and I don’t want to cause confusion by changing terms. But do be aware that many Autistics find it painful to be described in those terms.

And never assume that an Autistic doesn’t hear what you say around them. There have been cases of Autistics who were uncommunicative until they were in their 30s and were accidentally left near a typewriter, at which point they revealed that they could communicate, that they had somehow picked up written language with it never being taught to them, that they had heard and remembered everything that had been said to or about them, and that a lot of the assumptions people were making about them were very damaging.

So assume that everything you say is heard and understood and try to remember that some ways of referring to people hurt. Calling an Autistic’s change in observed behavior “regression” can make a person feel like their growth is not recognized, only their deficits. And it can carry undertones of a message that the individual is not what they should be or what was desired from them. These may seem small nits to pick, but if you are the one who is being misinterpreted and talked about right in front of you all the time, issues like the words and concepts that are being used to describe you are huge.

At any rate, back to the idea of regression in later life. Because I know two people who have experienced this, I was already well-placed to accept what the DSM-5 has to say about the existence of regression. If I know people who “regressed” in their late teens, why shouldn’t I believe that some autistics “regress” at age two or so? The development of an Autistic person is not a linear progression and our severity levels, as mentioned earlier, can be quite fluid. So I fully accept this paragraph of the Development and Course section of the ASD discussion in the DSM-5 and I am pleased to see a mention of later regression. While the discussion doesn’t make it clear that this later regression can occur in one’s teens (or in one’s thirties or forties, I should add. I have seen Autistics lose skills temporarily in the wake of a life tragedy in their middle age years) It does explain that this loss of skills can happen after age two and that’s going to be very beneficial for the many Autistics who don’t precisely fit the standard narrative.

To take this from a theoretical level to a personal level, I have lost skills at different times in my life. Regular readers will already know that I, like many other Autistics I know, sometimes lose the skill of speech (although I am still able to write or use ASL during times when I am unvoiced.) That is my most frequent encounter with shifting skill levels, but I do have times when I stim more and times when I stim less. I have times when I forget how to cook or even forget how to stay on task enough to eat. I frequently forget how to get from point A to point B (a state worsened by my topographical agnosia in which familiar places can look foreign, especially if I am approaching them from a direction I usually don’t.) I have times when my self-regulation of emotion skills drop out. I have times when it is practically impossible for me to understand human speech and other times when I have problems with understanding spoken language but the problems are small. I also, though I do not have and have never experienced catatonia as described in the Wing and Shah article, have days where my sense of balance is completely obliterated and I fall down several times in the course of living a normal day (and other days when my balance is strong enough to do yoga asanas.)

My skills are uneven and they can come and go and I’m not always aware of the triggers. I’d like to see a discussion in the comments of “regression”, both temporary and apparently permanent. Did your kid “regress”? What age and how? (And I’m sorry for any pain you feel from watching your child experience those changes. As much as we don’t like being described as “regressing” I am aware of how stressful and painful it can be for a parent to watch us go through these things and similar things Autistics regularly experience.) Have you “regressed” in your autism? How do you feel about it?

I think this is an important topic and I’m glad to see the DSM-5 team opening the discussion of autistic regression. Thank you for reading and I’m looking forward to any discussions that crop up in the comments for this entry.

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

Index
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.