Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Category: Diagnosis (page 1 of 2)

How Autism Can Mimic Avoidant Personality Disorder

Rose

[image description: a sketch by Sparrow Rose. A rose, colored red,  with different geometric patterns on each petal and the name Gertrude Stein inscribed on the green stem. The rose is superimposed over a circle of blue letters with the Stein quote, “A rose is a rose is a rose” encircling infinitely, like the plates Stein’s lover, Alice B. Toklas, used to sell.]


I stumbled across an article on Lifehack about Avoidant Personality Disorder  this morning. I read through the article, alternating between, “yes, this is exactly me,” and “a mental disorder is only a disorder if it’s not true. You’re not paranoid if they really are out to get you.”

Finally I got to the section that said:

“What is known, however, is that symptoms first start manifesting from infancy or early childhood. The child will display shyness, isolation, or discomfort with new places or people. Often times, children who do exhibit these tendencies grow out of it, but those with the disorder will become even more shy and isolated with age.”

That clinched it for me.  I do not have Avoidant Personality Disorder if it is something that develops in childhood.  This is not to say that someone else would not have both autism and Avoidant Personality Disorder at the same time. I am not a medical or psychological professional so I can only talk about my own experiences and perceptions here, in hopes that it will help others feel less alone or maybe give someone new things to think about and new avenues to explore.  Even if I’m simply venting my own frustrations to the void, that’s helpful for me. So I’ll continue.

I effectively have a mimickry of Avoidant Personality Disorder, caused by 50 years of being bullied by others. I have carefully studied the bullying and done whatever I could to make it stop. I have changed the way I dress, the way I wear my hair, my grooming habits.  I have tried Dale Carnegie’s methods outlined in his book How to Win Friends and Influence People, I have tried sticking with social groups that center around my interests, I have tried surrounding myself with only fellow Autistics, I have tried blending into the background, and I have tried saying nothing at all ever.

The bullying will never stop. After half a century of it, I have come to realize this.  It doesn’t stop when you grow up, or when you go to college, or when you find a job, or when you find work that you are good at, or even when you find a community of people who are similarly brained and have all grown up with the same crushing bullying themselves.  It never stops and the only place where there is no bullying is alone.

I’m not saying this to get your pity.  As graffiti in an ADAPT video says, “piss on pity.”  I am saying it because it is a solid fact that needs to be acknowledged.  No amount of zero tolerance policies can police the bullying away.  No amount of social skills training can teach the victim how to stop being whatever part of who they are that attracts the bullies.  The only way to stop the bullying is to stop letting bullies have access.

Temple Grandin does it with money — she has enough money to pay people to form a human shield around her so that she can live in a bubble where bullies are not permitted entrance.  I don’t have that kind of money and am not likely to ever have even a fraction of that kind of money .  The only way I can build a bully-free bubble in my life is to emulate Avoidant Personality Disorder.  It wasn’t a conscious choice on my part … inch by inch, the bullies drove me back into myself.  Like a slinking night creature, I have crept further and further from the glowing campfires of humanity and into the safe and soothing darkness of solitude.

Those who counseled me to “just put yourself out there”  are complicit with the bullies.  Those advisors have encouraged me to boldly stride behind enemy lines, unarmed. Sometimes they even blamed me for the shelling I received as a result.

When I tell people about the bullying, I get a few different reactions.  One popular answer is to tell me I’m bringing it all on myself.  If I just weren’t so … If I didn’t insist on always …  If I’d just stop … And why can’t I blend in better?

Another answer I get is that I’m blowing it all out of proportion.  Everybody gets teased.  It’s part of how people make friends with each other and I just need to lighten up a little and learn to laugh at myself.

Some well-meaning people tell me that they can’t see how anyone would want to bully me because I’m such a kind and gentle, loving person.  The thing is, whether I’m kind or whether I’m a jerk, the bullying is real and denying it could be possible is calling me a liar when I tell you that it does happen.

Let me talk a little bit about the traits of Avoidant Personality Disorder from the article — the traits that caused me to briefly question whether I might have Avoidant Personality Disorder or not. (I don’t.  Through most of my childhood, I virtually flung myself at others.  I am an extrovert and I spent my 20s seeking out human company all the time, alternating between hope and despair.  It has only been in middle age that I have begun giving up and avoiding people.  The accumulated years of bullying have finally weighted me down sufficiently to provoke an avoidant, hiding response to life.)

Reluctance to be involved with people unless certain they will be liked.

This has been me for a long time.  Lately I’ve been feeling pessimistic enough about people liking me that I’m reluctant to be involved with anyone.  This is not just the depression talking (although that’s a contributing factor, for sure.)  I have gotten enough screen shots handed to me of people who smile to my face and then talk hate about me behind my back that I’ve learned not to trust anyone.

But even before I reached this critical mass, I have had a tendency for years to assume the worst.  If someone is not clearly welcoming toward me, I assume they are just tolerating me and I try to go away before they reach the end of their tolerance.  This is learned behavior on my part.  After experiencing the same thing again and again, my pattern recognition finally kicked in.  It is other people’s behavior that has taught me that someone who does not make it clear that they enjoy my presence might eventually “snap” and start abusing me because I didn’t get all their hints. Hints that I can’t see.

I can see people welcoming me and I can see people abusing me, but I can’t see all those little nudges and hints and insinuations and sarcasms, and social corrections. So when people aren’t clearly welcoming, it’s an act of self-preservation to go away before the abuse starts.

Takeaway lesson: if you appreciate an Autistic person, make sure to let them know.  Take the emotional risk.  Tell them that they’re wanted and liked or loved.  You might embarrass them, sure.  But you will also be engaging in clear communication that lets them know they are wanted and should stick around.

Avoidance of activities (whether professional or personal) that would require significant contact with others due to fear of rejection or criticism.

I just quit a job last week.  I won’t pretend it was the greatest job ever.  It was a job that claimed to pay $8.10 an hour and, technically, did.  But it had such a draconian break policy that the realistic pay for the time I was required to be at their place of business in order to get my work done was more like $4.05 to $5.40 per hour.

But even with that, I needed that job.  Four bucks an hour ain’t much, but money is money and I’m a little bit addicted to eating. So is my cat.

But the bullying was so crushing, I had to leave before the bullies stripped me of the shreds of self-preservation I had left.

The ringleader set me up so perfectly.  He started out being very interested in what I had to say.  He encouraged me to talk more.  He found opportunities to get me alone to encourage me to open up even further, one-on-one.  He showed interest in my writing and even started reading my book. He had gotten five chapters into it by the time I left.

I came to be deeply emotionally invested in him and his circle of friends. And then one day, when the hooks were good and set in me, he turned on me.  He shouted at me. He called me names.  And his friends began to perform live theater in front of me — imitating me, my movements, my way of talking, my favorite subjects.  But all of it embarrassingly exaggerated, grotesque, and insulting.

I couldn’t even walk through the hall at work without getting waylaid and berated.  I started hiding in my car, missing hours.  I was falling behind in my hours and the boss said I had to make them up. I would have had to live at work all day long to make up those hours but the C-PTSD from all the years of bullying in school had kicked in at full force and my bullies started making a point of surrounding me. We could sit wherever we wanted in the workroom and I would quickly become surrounded by my bullies who would stare at me while they talked to each other and laughed.

I know it doesn’t sound like much.  But try it some time.  Life gets pretty grim when the only people you are ever in contact with are so clearly targeting you. I was becoming suicidal.  I couldn’t possibly make up those lost hours. In a last ditch effort to save my life, I quit.

Significant contact with others is not viable for me.  I have to meter my contact with people.  It doesn’t take long before they realize I’m only there to be their punching bag.  Places I can’t retreat, places I can’t hide — these are dangerous places full of bullies I can’t escape.

Takeaway lesson: If you know an Autistic who doesn’t want to go someplace, take them seriously.  Investigate.  Empathize.  Don’t just decide they’re being lazy or willful.  There’s a good chance they’re being damaged by that place and what happens there. Don’t jump to automatically contribute to the damage by forcing them to be there.  Find out what’s wrong.

Unwillingness to try new things due to shyness or feelings of inadequacy, particularly in social situations.

My feelings of inadequacy in social situations are very real.  I am not suffering Avoidant Personality Disorder – I am suffering humanity. People are cruelly unforgiving of those who cannot figure out the social rules and conform to them.  People are exploitative of those who struggle to conform to the social rules and thus are easy dupes for con artists.

Yes, I am unwilling to try new things, so long as there are people involved with those things.

I saw a pair of roller skates I really like and would get if I had income, but I don’t want to skate with other people.  I would love to spend more time hiking on trails but only if I can go alone. I love camping but I don’t want to camp with others.  I’m interested in trying new kinds of writing, new art techniques.  I’d like to play new musical instruments. I love learning languages but am limited in how far I can go because I don’t actually want to have a conversation in any language.

I am always open to the new experience …. but only if I can do it alone, without observers, without companions, without bullies.

Takeaway lesson:  if you know someone Autistic who doesn’t want to try something new, don’t assume it’s “just the autism.”  There could be other reasons.  You might be the reason. If you didn’t react well the last times they tried new things, they might not want to try more new things …. when you are around.

Sensitivity to criticism, rejection, or disapproval.

Tell me what “sensitivity”  means?  Am I sensitive when I have been wounded again and again until I spend all my energy trying to spot the landmines and skirt around them?  Is a soldier sensitive to Claymore mines? Is it right to call me sensitive after five decades of walking a never-ending social minefield?

Difficulty with building intimate relationships because of fears and insecurities.

I don’t trust anyone.  How could I possibly build a close friendship or relationship when those connections are based on mutual trust and I have long since run out of trust?

I watched 13 Reasons Why and I could understand why Hannah became so guarded.   After enough abuse had been heaped on her, she could never have dated Clay because she had lost the ability to trust that anyone could possibly like her and want to be with her just because she was a great person.  Everyone abused and exploited her and then sneered at her as a “drama queen”  when it was their treatment that had caused her to become so distressed in the first place.

This is what we do to victims of bullies.  We look at the depressed, broken shells they have become and we blame them for it, telling them that their brokenness is why they are bullied.

It’s like telling someone that they just need to stop bleeding and the sharks will ignore them.  But it was the sharks that bit them in the first place and they will never stop their feeding frenzy until they have devoured all the blood.  Bullies devour their victims and they aren’t even courteous enough to swallow them whole.  They tear pieces off them.  And more pieces.  And then they get excited when they see the emotional blood leaking from the wounds and bite larger and larger chunks, hypnotized by their own power to destroy another human being.

Is anyone surprised at difficulty with building intimate relationships after one’s being has been shredded by the shark teeth of constant bullying?  What about the fears and insecurities that are real? How much does cognitive behavioral therapy repair a person who is afraid of and insecure about something that has been happening every time they are around people ever?  How much therapy does it take to erase fifty years of bullying?

Feelings of being socially inept, inferior, or unappealing to others. As a result, there are tendencies to have extremely low self-esteem.

I wonder about this.  Self-esteem, that is.

All my life, I have been told that I have low self-esteem.  I can see why people would say that.  I don’t “put myself out there.”  I look at the ground when I walk (Partly because I don’t want to accidentally make eye contact with anyone but just as much because I need to see the ground.  I have bad balance and low proprioception.  If I can’t see the ground when I walk, I fall and hurt myself.)

Does it sound like low self-esteem when I say I am pathetic at making and keeping friends?  Is it still low self-esteem when it’s the truth?

Does it sound like low self-esteem when I say that there just aren’t enough accommodations to make it possible for me to keep a job (I was kind of doing okay at the last really crappy and underpaid job until everyone decided to team up to make my life hell for their amusement) and that I struggle with poverty as a result?  Is it low self-esteem when the truth is that my multiple disabilities get in the way and I really can’t support myself financially?

I don’t actually think I have low self-esteem.  I am not happy with my body (who is?) but I know there is hope that I will be able to afford medical transition some day and I can finally feel at peace in my skin.  But I also know I am more than just my body and I love the way I solve problems and puzzles.  I love my musical talents.  I’m still learning to draw, but I’m very proud of how quickly I’ve learned and how fast I ‘m progressing.  I am proud of my writing skill and pleased to see that skill improving all the time.  I am a compassionate, empathetic, kind-hearted person.  When I am not depressed by poverty and bullying, I know that I matter.  I help people all the time.  My heart is filled with love.  I feel at home in nature.  I am a good person.

If I really am socially inept and unappealing to others (except as an amusing punching bag), is it fair to call my reaction of despair “low self-esteem”?  It sounds like the problem is being centered in me rather than in the people who go out of their way to make my life as miserable as they can get away with.

Takeaway lesson:  telling someone about their “low self-esteem” that only cropped up as a result of being mistreated by others is just another way to blame the victim for suffering someone else caused.

Yes, I am avoidant.

No, it is not a personality disorder.

It is a matter of survival.

The recent bullying is so fresh that it took me four hours of sitting in my car in the McDonald’s parking lot yesterday to finally overcome my physical exhaustion and go inside to get some electricity for my battery and get a little work done.

Avoiding is the tip of the iceberg.  Being avoidant is debilitating and not always for the reasons you might assume.  I am so tired all the time.  I am worn out from carrying the burden of bullying all the time.  I am exhausted.  There is so much I want to do — I have long lists of things I’m excited to write, draw, record.  But I’m running out of steam.  Survival is too hard.  It’s ground me down.  I’m wearing out.

The price of permitting bullying to continue is unreasonable — at least for me.  Maybe it’s because the rest of the world doesn’t have to pay my price — and because they have no idea what I would put into the world if I just had a little more energy — that they don’t care much about stopping bullies.

You can do your part, though.  Stand up against bullying.  If you can do it without making too much of a target of yourself, speak up when you see bullying.  You might have to watch for it, though.  Bullying is all around you and you don’t see it.

In high school I was so bullied that classmates put sexual statements about me in the school newspaper.  “That couldn’t be true,”  my mother said. “It was a good school.  They wouldn’t have let that happen.”

But they did it in code.  That’s how they got away with it.  People are being bullied all around you and you don’t even see it!

They started by telling me they knew I was selling sex. (Good grief! I was 13 years old!) and that they heard I did it under a bridge on Dixie Highway.  (What bridge? There is no bridge on Dixie Highway.  They picked that road because it was on the south side of town where I lived and they had already spent months tormenting me about living on the poor side of town and wearing crappy clothes.  Making this alleged sex selling take place under a bridge on Dixie Highway was just a way to fold their poverty shaming in with their sex shaming.)

So when the school newspaper had a gossip column and the gossip column said, “and which seventh grader was spotted under the Dixie Highway bridge last Friday night?” it was crystal clear to me and my bullies what had just happened — I couldn’t even read the damned school newspaper without being jabbed by my bullies.  But it was completely invisible to faculty and parents.

Bullying goes on right under your nose all the time.  It’s impossible to stop it.

But I hope you’ll try anyway.

It’s too late for me.  But there are children being shredded by the shark teeth right now.  Don’t let them grow up to be people who can’t even go to work because the shark bites never healed and run so deep that they bleed all the time, continuing to attract more sharks all the time.

Don’t feed the sharks.  Take their food away from them.  And don’t blame the victims of shark attacks by telling them they smell like sharkbait.

The Lifehack article says:

“The cause of Avoidant Personality Disorder is still undiscovered, but scientists believe that it may stem from genetics or as a result of childhood environments, such as experiencing emotional neglect from parents or peers.”

So maybe I do have Avoidant Personality Disorder after all.  Maybe I’m just incredibly resilient and it took decades of bullying and emotional neglect to create Avoidant Personality Disorder in me whereas most people develop it after only a few years of the same.

It should be a crime.  And the whole damned world is guilty.

So why is it me that has to live in the prison they created with their mockery and hatred? Why am I the one being punished for everyone else’s lack of …. well, I was going to say lack of humanity, but since they all behave this way I guess bullying is definitionally an act of humanity.  It seems to be me who is not part of the fold.

I don’t have any answers to that.

But from my prison I will continue to send out love letters and lifelines of hope and poetic writing for others to catch hold of like a rope tossed from an extreme place.  Sure, the bullies will catch hold of that rope and jerk on it.  They always do.  They won’t ever stop.  But my words will sail over their heads at the same time, floating out to the world where they will offer those with the shark tooth shaped scars on their spirit the healing balm of knowing someone else sees, someone else knows, someone else understands.  I know what the sharks can do and I offer you the only thing I have: my words.

And this is what I say to you who are circled by sharks: escape. Find a break in the wall of sharks and swim through as quickly as you can.  Don’t look back.  Stay one stroke ahead of the sharks and there is good life to be found in the water. Don’t sink.  Don’t drown.  Keep swimming.

Do not let the sharks decide what you are worth and what you get to do.

Okay, I know that, to some degree, they do and will.  The sharks own this world.

But there are stretches of clear blue water on smooth seas filled with playful dolphins and swaying anemones.  Find them.  Strike out and find your safe waters and own them.

And I’ll keep swimming too.

 

 

Autism and the DSM 5: Part 10: Development and Course: Part 4

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 4
originally published October 26, 2013

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.

Autism and the DSM 5: Part 9: Development and Course: Part 3

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

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!

Autism and the DSM 5: Part 8: Development and Course: Part 2

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 2
originally published October 4, 2013

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.

Autism and the DSM 5: Part 7: Development and Course: Part 1

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 1
originally published September 30, 2013

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.

Autism and the DSM 5: Part 6 – Diagnostic Criteria: Section E and Severity Levels

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: Diagnostic Criteria:
Section E and Severity Levels

originally published September 21, 2013

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: (you are here)
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

I’m combining Section E and Severity levels in one post because I don’t have a lot to say about Section E:

E. These symptoms are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

The very few things I want to say: a. intellectual disability and autism are two separate things (though often found together.) I think everyone reading this blog already knows that but I also think almost everybody reading this blog has encountered someone at some point who didn’t know that and I suspect many of us have frustrating stories. It can be difficult when, like me, one doesn’t want to come across as stigmatizing toward intellectual disability (in fact, I feel strong solidarity with those with intellectual disability) but one wants to communicate that autism is not the same thing as intellectual disability.

I have the same issue with mental illness — autism is not a mental illness, but I don’t want to add to the stigmatization of mental illness. I’ve stopped correcting people who call autism a mental illness because I realized I really can’t say what makes it different: most mental illnesses are partially or wholly neurological (as is autism), mental illnesses are stigmatized (as is autism), mental illnesses lead people to behave in ways that others don’t understand or are afraid of (as does autism). I no longer see any point in correcting someone who calls autism a mental illness.

b. a repeat of what’s already been said: autism is not a static, monolithic thing. If you are looking at a child, you expect autism to look different than if you are looking at an adult. Similarly, if you are looking at someone with an intellectual disability, you expect autism to look different than if you are looking at someone who scores very high on I.Q. tests.

Something I noticed when I watched Sean Penn’s performance in the movie I Am Sam was how much an intellectual disability can resemble autism. I figured, “well, it’s just a movie. Not all of Hoffman’s models for Rain Man were Autistic so maybe Penn modeled after some Autistic people when preparing for the role,” But a little bit of research revealed that there is a bit of “observational cross-over” in real life.

So one thing Section E is saying is to watch for that cross-over and be prepared to have to decide if the developmental delay is expected or unusual. (Intellectual Disability and Autism are so closely related that they appear in the same section of the DSM and they do often walk hand in hand. This brings up a lot of thoughts about the way autism is portrayed, but I’ll save those for another time because they’re a little more off-topic than I prefer to get in a blog essay, rambling though I tend to be.)

On to Severity Levels.

The severity specifiers (see Table 2) may be used to describe succinctly the current symptomatology (which might fall below level 1), with the recognition that the severity may vary by context and fluctuate over time. Severity of social communication difficulties and restricted, repetitive behaviors should be separately rated. The descriptive severity categories should not be used to determine eligibility for and provision of services; these can only be developed at an individual level and through discussion of personal priorities and targets.

Look at that!! Did you see what they did there? “severity may vary by context and fluctuate over time.”

This is terrific! They are acknowledging (they acknowledge this multiple times and in different ways throughout the overall DSM-5 entry) that severity level is not a static thing! Hurrah!

There is a conversation currently going on in the comments sections of these entries that is talking about this issue. Check it out. A woman in her mid-thirties is having problems right now and is seeking help and concerned that her potential autism diagnosis will be rejected because she was functioning at a higher level when she was a child and being very supported by the adults in her life. Now that she is going it on her own, she finds herself floundering. That is a change in context (and time) that has affected her severity level.

And did you notice that bit about how the symptomatology might fall below level 1? While clinically significant impairment is required for an autism diagnosis, it is recognized that an Autistic person might not always be impaired enough to require supports. Falling below level 1 means sometimes not needing supports at all. It is recognized that someone might be severity level 2 in some things, severity level 1 in others, and not needing supports at all in yet another set of life skills.

This is one of the reasons so many Autistics shy away from “function labels.” For example, I would be called a high-functioning autistic (in fact, I’ve seen that exact phrase in some of my medical records) but my functioning is fluid and there are times when I am not high-functioning at all. Calling me high-functioning sets up expectations that might block me from meeting some of my needs, for example my need for alternate forms of communication when I am in the hospital and my ability to speak has dropped out due to stress and illness.

But I don’t mind as much being described as “currently functioning at severity level 1” because there is the implication that I might not always function at that level. It communicates something (but not everything) about my current needs but does not cement me in that one place where it is never recognized that I sometimes have other needs.

And on top of that, the DSM-5 recognizes that severity level is just a rough outline that doesn’t tell you very much about an individual and so they remind professionals who are reading the entry that they cannot use severity level to determine services! That is also huge! Yes, it costs more and takes more time to approach services on a case-by-case, individualized basis but that’s the thing about autism: every one of us is so different from every other one of us that there really is no other way to ensure appropriate services are provided. We have to be personally fit into the programs and services we need!

So, I am really happy about that. I will leave you with the actual table of severity levels. They come in two flavors: social communication, and restricted repetitive behaviors. That’s also nice: it’s recognized that someone can be at different severity levels in those two things simultaneously. DSM-5 really does represent an improvement in how we, as a society, as talking about autism.

I don’t know that I’m going to specifically discuss what’s in the severity table unless others make thought-provoking comments that really make me want to dive in there. It’s mostly an attempt to quantify the factors that were already discussed in Sections A and B. So with Table 2, I bid you adieu for the day and will be back tomorrow with more discussion of the DSM-5.

TABLE 2: Severity levels for autism spectrum disorder

=============================================

Severity Level: Level 3 “Requiring very substantial support”

Social Communication: Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and,  when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches.

Restricted, Repetitive Behaviors: Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.

——————————————————————————–

Severity Level: Level 2 “Requiring substantial support”

Social Communication: Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication.

Restricted, Repetitive Behaviors: Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.

——————————————————————————–

Severity Level: Level 1 “Requiring support”

Social Communication: Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.

Restricted, Repetitive Behaviors: Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Autism and the DSM 5: Part 5 – Diagnostic Criteria: Section D

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: Diagnostic Criteria: Section D
originally published September 20, 2013

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: (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.

Autism and the DSM 5: Part 4 – Diagnostic Criteria: Section C

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: Diagnostic Criteria: Section C
originally published September 19, 2013

Index
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!

Autism and the DSM 5: Part 3 – Diagnostic Criteria: Section B

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: Diagnostic Criteria: Section B
originally published September 18, 2013

Index
Part 1: Losing Your Diagnosis? 
Part 2: Diagnostic Criteria: Section A
Part 3: (you are here)
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: Development and Course: Part 4

Today I’m looking at section B of the DSM-5 diagnostic criteria for autism. And I am awkwardly typing around a cat who decided this was the best time ever to conquer my lap.

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g. simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).

3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity: Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

 

Again, some of the things I pointed out yesterday – the very helpful illustrative descriptions of types of behaviors and traits that fit into these categories, and a broad range of affectedness listed. Also the “currently or by history” phrase that is so helpful for someone who is having a hard time now and needs a diagnosis to help them but is not currently manifesting all the symptoms required for diagnosis (but manifested sufficient for diagnosis in the past.)

Section B is the only section in the diagnostic criteria that is not all-or-nothing. An individual only needs two of these traits for diagnosis. So instead of the thousands of different permutations Alyssa found in DSM-IV, there are only 6 permutations in the diagnostic criteria of DSM-5 (4 items combine in 6 unique pairs: 1&2, 1&3, 1&4, 2&3, 2&4, 3&4.)

The other big thing I want to note with this section before I go on with the rest of my day is number 4: “Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).”

I am so happy to see that in the official criteria!

Everybody who knows an Autistic person and every person who is Autistic knows . . . KNOWS . . . that there is “this sensory stuff” that goes along with autism. There has been a lot of debate and discussion over whether they are additional co-morbids or part of autism itself. And it’s been confusing because our “sensory stuff” is so different from person to person.

I have hyperacusis – high pitched sounds make me dizzy, fall over, nauseated, etc. But I have no problem with *loud* sounds — in fact, I am a drummer. Other Autistics have a hard time with *any* loud sound. I know a married couple and she has hypersensitivity to sound and he has hyposensitivity to sound. So he has a deep need for sound stimulation and puts on loud music and she is assaulted by it because she needs lots of quiet. It’s hard on them. But they’re both Autistic and know that about themselves so they work out ways to get both their needs met.

I am so happy to see hypersensitivity and hyposensitivity listed in the diagnostic criteria. The way section B is worded, the authors acknowledge that not *every* Autistic person deals with sensory issues. But it also accepts that it’s a huge issue for a large number of us. Thank you, DSM-5 committee. It’s about time!

I don’t have anything more to say today. I may combine C, D, and E in one post because they’re so short. Then we’ll move on to the severity table and the DSM-5 discussion of severity levels (which is SO AWESOME! I am having a hard time waiting to get to that part!) and then move into some of the other things in the discussion section of the DSM-5 entry on autism.

But now it’s time for me to have some breakfast and run some errands so I will be back tomorrow with another DSM-5 post. Have a great day and be nice to your Autistic (especially if your Autistic is YOU!)

Autism and the DSM 5: Part 2 – Diagnostic Criteria: Section A

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: Diagnostic Criteria: Section A
originally published September 17, 2013

Index
Part 1: Losing Your Diagnosis? 
Part 2: (you are here)
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: Development and Course: Part 4

So, there are a lot of things I am almost bursting to talk about in the DSM-5, but I’m going to set them aside for later posts because I’m guessing that the number one thing people want to know is, “what are the new diagnostic criteria?”

I gave a taste of that yesterday when I quoted the note that says that *EVERYONE* who has a DSM-IV diagnosis is grandfathered. You all get to keep your diagnoses. But what are they using for people being newly evaluated?

If you are familiar with the DSM-IV criteria, you remember they have a sort of buffet going on: chose this many items from list A, this many items from list B, and so on. The new criteria have one “two or more items from this list” section, but most of it is absolute — you have it or you don’t. So where the DSM-IV criteria allow for there to be 3129 different permutations of diagnostic traits that result in an autism spectrum diagnosis (thank you, Alyssa, for doing that math!) The DSM-5 has significantly cut down on the “wiggle room.”

Of course that has people worried! Because autism is a pretty broad spectrum and there are some very diverse ways of manifesting it. I look at my Autistic self and compare it to: my Autistic friends; famous Autistics like Temple Grandin,  Lianne Holliday-Wiley, Rudy Simone, Wendy Lawson, Jerry Newport, etc.; Autistic children of friends; etc. and I see a pretty wide range of difference. How can we all fit into one narrow set of criteria?

Well, let’s look at that. There are five main sections (A, B, C, D, and E) and I’m going to spend today and the next four days looking at them, one at a time. So, let’s see what section A (on page 50 of the DSM-5) says:

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

(Don’t worry: we’ll get to severity level and Table 2 in a future post.)

Okay, see what they did there? They didn’t give the pick-and-choose options we’ve grown used to seeing but they gave illustrative examples of the *range* of things that fit that criteria. That does two things: first, it helps people to get a better grasp of what they mean when they say, for example, “deficits in social-emotional reciprocity”; and, second it shows that a person can be diagnosable whether they are completely sitting in the corner, staring at the wall, not responding when you call their name or whether they are approaching you and engaging with you but doing it by presenting sort of a “wall of words” where they are “monologuing” about something really important to them but forgetting to stop and let you share, too.

That’s huge, because the difference between the two people I just described is pretty huge, but the difference is also not huge because both are Autistic. The two hypothetical people I described are part of the same “tribe” of people. If you look at them, they will seem totally different . . . which is good, because they are not the same person! But the neurology that is underlying those two very different types of relating (or not relating, if you wish) to others is of the same stuff.

Also, did you notice that it says, “currently or by history”? Does the person being considered for diagnosis have these traits now or did they use to have them when they were younger but have developed and grown away from some of them? That’s a big deal, too. As you will see, there are other considerations for an autism spectrum diagnosis, but the person who has become “indistinguishable from their peers” (whatever that means. It is a problematic phrase as Alyssa and Kassiane are currently exploring in their blogs) might still be diagnosably Autistic. That’s something to consider before telling someone something like, “you don’t look Autistic.” There are many aspects of autism that are not immediately visible to the eye.

And there is something I like to say, especially when people wonder why I don’t resemble their six-year-old Autistic child: “developmental delay does not mean developmental halt.” We Autistics continue to develop and grow throughout the course of our lives. At age 46, I am still growing and developing in very dramatic and noticeable ways while non-autistic people do tend to get pretty solid by their twenties and don’t really change a lot afterwards. I’m not making a value judgment! Both ways of developing are valid. I’m just pointing out a huge difference and I am very glad to see that the authorial committee of the DSM-5 appears to have  noticed that, too, because you will see many different places in the text where they indicate a deep understanding of the ways that Autistic people change over time.

So that’s today’s take-away:  We no longer are choosing two or three things off a longer list. We have a fixed list of three things with section A: social-emotional reciprocity, nonverbal communication behaviors, and relationships with others. But within each of those three things, we have a range of different ways of being that would fit into that category. And each individual can express these criteria in a range of ways over the course of their life.

I welcome discussion of the material I’m posting in this DSM-5 series. And I will permit any comment anyone wants to make, so long as it is not advertising spam or something that reveals another person’s private information or otherwise threatens others. Please do try to be civil with one another, but know that during this discussion series I will not be practicing censorship at all — feel free to say what you really think. I promise you it’s okay, even if I don’t agree with you. I want this DSM-5 series to be a chance for people to really talk these ideas out without fear of reprisal.

If you have a question specifically for me about the DSM-5 entry or anything related to this discussion, do call my attention to it by addressing me specifically (for those who might not know, my name is Sparrow, so just start the comment with “Sparrow, [insert question]”) and I will do my best, within the constraints of my time and knowledge, to answer.

Thanks for reading and please do stay tuned! There is a lot of material in the DSM-5 and I am going to be spending a lot of time covering it, so keep coming back and I hope you are enjoying this!

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