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 RainMan 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.
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.
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. For some, this can be prescribed medication from their primary care physician, for others, they may look to self-medicate to help ease their anxiety, this can come in the form of supplements or recreational marijuana taken through food-based products or a vape where they can find ways at using it efficiently for their benefit. Grandin 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.
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!
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!)
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!
Three years ago today, I began what turned out to be a ten-post series about the new DSM 5 (it was never finished. There were meant to be at least three more parts.)
I am in the process of migrating posts from my old blog to this new one and I decided this series should be the next set of posts I move over here. Since it’s been three years, I will re-read everything I wrote and probably write an update post on this topic next week.
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: Losing Your Diagnosis? originally published September 16, 2013
I went to the medical library near my house and scanned the autism pages from the DSM 5. Last night I typed them out (I scanned with an iPad Mini so they didn’t look so great) and read it while I was typing.
I was floored by a lot of what I saw. And by floored, I mean good floored! I had no idea some of that stuff was in there. We (the Autism/Autistic Communities) were so worried about people losing their diagnoses that there wasn’t much talk about what else was in there.
Well, this post is the beginning of a series of posts about what the DSM 5 actually says. I will quote excerpts from it (it’s copyrighted so I can’t just share my scans with you all, much as I’d love to) and I will paraphrase other parts of it so that I don’t exceed fair use laws in my country. But if you stick with me for this whole series, by the end, you’ll pretty much know everything that’s in there. Including the actual diagnostic criteria!
Today I’m going to address the big fear about losing your diagnosis. The great news is that if you had a diagnosis, you still do! The DSM 5 does not take away anyone’s pre-existing diagnoses. So I’m still Autistic. 🙂
Here’s the actual text from the manual that addresses that issue (from page 51) and I’ll see you again in my next DSM post!
Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
My nametag as Keynote Presenter at the Autism and the Pursuit of Happiness Conference
This is a re-post of a post from February 13, 2016. What follows is the complete text of the keynote address I presented at the Autism and the Pursuit of Happiness conference. This conference was significant for me because it helped me realize my mission: spreading Autistic Happiness.
As a result of that realization, I launched The Autistic Happiness Project. If you would like to become a patron of my work to help increase the amount of Autistic Happiness in the world, please have a look at my Patreon Page:
The text of the presentation is below, or you can watch this video of the Keynote Presentation, with CC subtitles:
AUTISM AND THE PURSUIT OF HAPPINESS
Today I presented at the Third Annual Autism and the Pursuit of Happiness conference, hosted by Empower Autism. Asheville, North Carolina, has become one of my “spiritual homes” because it is a beautiful, laid-back city with a vibrant and thriving Autistic community, thanks to the tireless efforts of more people than I could count.
Despite the cold temperatures and snow (my nemesis!), I feel so blessed to have been able to participate in this terrific conference. The organizers were welcoming, friendly, and meticulous in seeing to every detail to maximize the comfort and safety of us Autistic presenters. My fellow presenters are an amazing, wonderful, honest and lovely group of people. The audience was attentive, eager to hear what we had to say, and approached the whole event with open minds and open hearts.
I was asked by more than one person if the text of my presentation would be available online. I promised I would put them in my very next blog post, so here it is. Also, most of the conference was filmed and I will have a video of this presentation at some point in the future, although the specific date is an unknown to me.
I hope you enjoy my transcript and I look forward to being able to share the recording with you all soon.
Autism and the Pursuit of Happiness, Keynote Address, February 13th, 2016
What is happiness? We are bombarded with messages every day addressing that question. The answers range from the classic white picket fence family with two children and a dog to owning the perfect shade of lipstick or sports car to savvy investments to eating a decadent ice cream treat. Happiness is promised in advertisements nearly as much as sex (which is also a culturally approved route to happiness.)
But with all of our culture’s near obsession with happiness, who is talking about Autistic happiness? I hear so much talk about therapy and meeting milestones and being table ready. Socializing with one’s peer group and developing coping strategies. Addressing medical needs and finding good solutions for people with high support needs as their parents age. So many important aspects of autistic lives are discussed every day, but who stops to ask if we are happy, fulfilled, and enjoying our one and only precious lives?
Today we are the ones who will talk about Autistic happiness. You will hear from people discussing elements of happiness such as self-acceptance and love, harmonious family life, sexuality, empathy, relationships, and more. Today is the day we answer back to society and talk about our Autistic views of happiness and its pursuit. Today we do not wait for society to tell us what will make us happy. Today we take charge of our own lives and we will tell society.
Autism is filled with happiness. Our joy is like a bubbling spring that comes from deep within the earth, from deep inside of us. When that spring is allowed to flow, our happiness is visible, palpable. We are, like all humans, born to rejoice.
Happiness is when everything is arranged by color and size. Happiness is when the last number fits and the puzzle is perfect. Happiness is when a special, trusted person is near. Happiness is a feast for the senses that is just right, not too little, not too much. Happiness is a delighted squeal, a flapping hand, a leap, a twirl. Happiness is the gentle sawtooth edge of a cat’s purr. Happiness is the sparkle of water, the tickle of shifting sand, the squish of mud. Happiness is emptying the can of shaving cream and the entire roll of toilet paper just to see how they look and feel.
Happiness is when the hard things get accomplished. Happiness is feeling competent. Happiness is learning new paths to success. Happiness is making and keeping friendships. Happiness is being able to help others. Happiness is sharing the things we love, talking about them, words tumbling out of our mouths like carbonation. Happiness is not talking, holding words and thoughts inside and not being required to dilute them by sharing them with others who might not get it anyway.
I often describe myself as a fundamentally happy person. Happiness is my default state. It surprises me when others do not agree with that description, but one day I realized that the people who do not connect with the idea of me as a basically happy person are the people who rarely see me happy, often because they, themselves, are sources of unhappiness in my life. It has taught me to re-examine my relationship with anyone who does not share my view of myself as being a naturally happy person.
That was such an important revelation for me. You see, happiness comes first from within, but the things and situations and people we are surrounded by can amplify or squelch our happiness. This is true for everyone, of course, but experience and observation suggests to me that we Autistic people are much more vulnerable to the input or interference of others for many reasons. We have to protect our precious happiness from those who would steal it from us. And it’s hard, because not all of our happiness thieves are intentionally stealing our happiness. Some are even trying to increase our happiness, but in misguided ways that end up accomplishing the opposite effect. Others decrease our happiness because they weren’t even thinking about us or they weren’t thinking about us in supportive, understanding, and nurturing ways. So it’s not just about looking for the bad people, because a lot of very good people can diminish our happiness without ever intending to. They can drain our happiness away so innocently that they are as confused as we are about where our happiness went and why it has gone away.
So we develop shields to protect us – and sometimes those shields are helpful but sometimes they block out new happiness along with the risk of losing the happiness we already have. And we look for happiness allies, people who love to see us happy and do what they can to foster our happiness. In return, we can seek their happiness as well. Because one beautiful thing about happiness is that it can build on itself, spiraling upward higher and higher, just the same way that misery can twist backward on itself, spiraling us further down into the depths of despair. But it is much more wonderful to soar higher and higher on updrafts of happiness, so we seek out our happiness companions and help one another learn to fly together.
At a conference dedicated to the pursuit of happiness, it feels contrary to talk about the things that inhibit or diminish or even crush happiness, but it is an important part of knowing what something is to understand what it is not as well. The darkness that snuffs out happiness can reveal the shape of the light that happiness is. Understanding those things that we Autistics are trying to shield our happiness from will help others to add their strength and love to our shield walls. Understanding the enemies of happiness helps us avoid innocently becoming one ourselves. Our goal is to help everyone to drink fully from their personal springs of happiness, chasing away the things that drill holes in us and let the happiness drain out until our buckets are empty.
So often, it is a balancing act. For example, loneliness can empty a person’s happiness bucket. Loneliness is different from being alone. Being alone can be soothing, familiar, friendly. Loneliness is when we feel forced to be alone. Loneliness is isolation and alienation. In loneliness it is easy to forget that we are loved and lovable. It is easy to forget that we are not alone.
But loneliness cannot be eradicated simply by being around other people. I don’t know about you, but when I am around the wrong people I feel far more isolated, more alienated, and more alone than I do when I’m by myself. Well-meaning friends, family, and therapists have encouraged me to “put myself out there” when I’m feeling lonely and low. It is the universal remedy to loneliness and depression after all.
For years, I marveled because that advice really does seem to work for some people but it didn’t work for me. When I am lonely and I go someplace where there are people, I feel worse. At first, I thought it was just me – a sign that I was hopelessly broken. Then I learned that I am Autistic and I decided for a while that it might be an autistic thing – being around people helps make loneliness and depression better, except not for Autistic people. But now I realize that’s not the full truth, either. The reason we are advised to go out in public when we are depressed is that connecting with people is what helps us feel less lonely and less depressed.
The more difficulty a person has in casually connecting with people, the less helpful the advice to “put yourself out there.” Being with others helps Autistic people feel less lonely and depressed, too, but we have to be more careful about who we choose to be around when we want to feel less lonely. Being around people who don’t understand us, people who blame us for things that are out of our direct control, people who laugh at our differences, people who treat us like children even if we’re adults … and, honestly, let’s face it, even children don’t like most of the ways that children are treated … these people will make us feel more lonely, more isolated, more depressed. And so the person who encouraged us to “get out there and meet people” has innocently contributed to draining our happiness even when they were trying to help patch and fill our bucket. This is one of the reasons many of us become afraid of going to therapy – if we get a well-meaning but clueless psychologist, they can innocently steer us in directions that turn out to be very bad for us.
But I noticed that the times I didn’t feel good and needed connection and specifically chose to go someplace with familiar people, people I knew understand and love me, people who feel happier when I am happier, people I am happy to see become happier, it really did lift my spirits and make me feel less alone. It really did patch my bucket and help me get it filled again from that mysterious inner spring from which so much happiness flows when it has not been blocked by loneliness.
So finding happiness and helping others find happiness is a balancing act. Sometimes we all need to be alone, but sometimes we are lonely and in those lonely times someone can blunder when they try to help us by encouraging or even coercing us to go to the wrong places. Happiness is a balancing act and autistic happiness even more so. And because our happiness is filled and drained in ways that can be subtly different (or, really, hugely obvious) it is so much more important that we learn how to protect our happiness and seek out our happiness allies to support one another and to cherish happiness together.
Our happiness thieves are not all so innocent and well-meaning, though. Some of the big bads we need to protect ourselves from, and often need support and assistance from others, are injustices and oppressions that disproportionately affect Autistic people and other vulnerable groups of people. Many Autistic people are in more than one vulnerable group, making so many of us even more vulnerable to the big bads.
Three of the biggest of the big bads are abuse, poverty, and lack of healthcare access.
Abuse is obvious – of course it drains happiness. What I was shocked to learn was how much more vulnerable we Autistic people are to abuse than the general population. Disabled people, in general, are at three times the risk of physical and sexual abuse compared to the general population and Autistic people are among the most vulnerable of all disabled people. Just one example: a study found that 83% of women with developmental disabilities have been sexually assaulted at least once in our lives. The same study discovered that 49% of people with intellectual disability experience sexual abuse or assault at least ten times over the course of their life. If these figures shock you, they should. I have faced repeated abuse in my own life and still it shocked me to learn how widespread the experience of abuse is among people with autism and other disabilities.
There are other kinds of abuse, too. Twenty percent of disabled people using a third-party payer system are passed from person to person, used as units of commerce by people who collect their disability money and give very little care in return, if any. That’s one-fifth of those on third-party who are only cared for the very minimum amount required to keep them alive so the money keeps coming in. And, at the risk of overwhelming you with the big bads, I also want to remind you that so much of what gets reported as “abuse and neglect” is actually rape, assault, and even murder, the crimes verbally downplayed by a system that views disabled people differently and, as a result, often fails to protect us.
Poverty is another big bad that drains happiness away. A British study found only 15% of Autistics had full-time employment. Many of us struggle on disability benefits that leave most of us surviving at 20% below the official poverty threshold. And I have known several Autistic people who have no income, no disability, no family to support them. Their lives can only be described with phrases like “crushing poverty” since merely saying “poverty” does not begin to convey their experiences. For many years, I knew them because I lived among them, crushed under the weight of lack myself. Twice the number of Autistics, per capita live in poverty than the poverty percentages of the general population.
Transitioning from one’s family of origin to independent living is so difficult. Finding and keeping employment is a huge challenge. Struggling to keep a roof over one’s head with no or very little income feels like a losing battle every day. These hefty challenges leave little room for personal growth, rest, creativity, socializing, and, of course, happiness.
The big bad of healthcare access drains happiness away through frustration, overload, and poor health. Too many Autistics had spotty healthcare, at best, before the Affordable Care Act and the ACA hasn’t significantly helped increase access. Look at Mel Baggs and Paul Corby to see especially grievous cases of Autistic people being denied lifesaving medical care. Baggs had to fight for a feeding tube for zir gastroparesis due to being a non-speaking Autistic adult. Corby is still trying to get on a heart transplant waiting list despite being young and in excellent health other than his heart disease but he is being denied access to a transplant solely based on his autism. Our healthcare system is failing our most vulnerable citizens.
These are the battles we have to fight in our pursuit of happiness. These are the big bads we must all be joined against if we are going to be one another’s happiness allies.
In this battle, the strategy that works for each of will necessarily be different. We are divergent in many ways and there are many different flavors of autism and many different support needs and combinations of support needs. There are many different skill sets among us and many different challenges. But all of this can be said of the entire collection of human beings. We are as much similar as we are different – similar to other Autistics, similar to other human beings. To find happiness, we must be understood in both our similarities and our differences, not just one or the other.
I have found happiness. Most of my life it seemed impossibly elusive and I still struggle to protect my precious joy, but I am here to tell you that the Autistic pursuit of happiness is not a futile quest. I have had to color outside the lines and think outside the box in order to find happiness. As a matter of fact, I don’t just think outside the box – I live outside the box. I did my research and weighed my options and as a result I moved into my van because it is much more affordable than an apartment and gives me the freedom to move around, meeting other Autistics and working to increase understanding and acceptance of our different perceptions, our different lives, our different needs …. and our commonalities as well.
I know the life I have chosen is not for everybody, Autistic or not. For starters, I love driving and am pretty good at it, if I can say so myself. Most of my friends are not able to drive. Nearly all of my Autistic friends are unable to drive for a variety of reasons. I live in a very small space, which is also something that doesn’t appeal to everyone (although I like to joke that my home may be small but my yard is three million square miles. How can I feel cramped with that much space to explore?) I have a lot of variety in my life, but I have found ways to build in the comforting routines that keep me grounded and happy.
The main point of mentioning my alternate life style is that it is a way of living I chose for myself. I found the strength and courage to make a change. I found the power and autonomy to choose for myself. I surrounded myself with supportive people who were also excited about my choice and could help me sort through questions and problems that arose. This is what fosters happiness. Happiness is not a specific lifestyle, it is the ability to make decisions for yourself and be treated with respect and dignity, as a person who is capable of knowing what they want from life. Happiness is the freedom to choose and the support to make those choices into reality. This is what I want for all Autistic people: To have our competence respected, to have our support needs met with dignity, to be encouraged to build a life that serves our needs and wants. It seems to me that these are small things to ask for but so often it feels as if we are asking for mountains to be moved. Why are such basic things treated so often as unreasonable?
But they are building blocks that are fundamental to the pursuit of happiness. Yes, a person can find happiness in the most extreme circumstances. Viktor Frankl taught us this in his classic book, Man’s Search for Meaning. But if we are committed to fostering the Autistic pursuit of happiness, we cannot dismiss the importance of smoothing the way for happiness to flow freely. Just because humans are capable of finding happiness in the deepest pit doesn’t mean it is right for us to leave even one person lacking in the freedoms and supports that so many other people inherit as their birthright.
Many of the things you will hear from presenters today will elaborate on themes I have barely touched on this morning. Listen with an open heart and open mind. These discussions of pursuing happiness are long overdue in the autism world. They are inextricably intertwined with issues of health and safety, survival and growth.
The Reverend Doctor Martin Luther King, Jr. quoted the prophet Amos, speaking of “justice rolling down like waters and righteousness like a mighty stream.” When that righteous flood of justice roars through our valley, sweeping away the stones of restriction, oppression, stereotypes, and obstacles that crush us and dam our fountains of natural joy, we will be free to unfurl our tender roots. Nourished by our own flowing happiness, we will stretch our arms high, like branches growing upward, grasping the very rim of the sun. Our laughter will tumble down like birdsong as we pull ourselves and one another higher and higher still, rising on our tide of happiness, reaching ever toward an unlimited sky of dreams beyond today’s imagining. The pursuit of Autistic happiness begins right here, today, as we uncap the well and drink joyously together. Thank you for joining us today.
[image description: a movie poster for Life Animated. The movie title is in red on a blue background. The top half of Owen Suskind’s head is at the bottom of the image and line drawings of figures from Disney animated movies surround him.]
Life, Animated: A Review
Last night I went with friends to the Portland Museum of Art in Portland, Maine, to see the indie documentary, Life, Animated.
Life, Animated is based on a book by Ron Suskind, a journalist and father to Owen Suskind, the Autistic young man who is the film’s subject and an absolute delight. Owen’s greatest love in life is Disney movies and these films have sustained him through many dark years of isolation and bullying (years Owen calls “glop”) as well as all the disappointments and tragedies a well-lived life can bring. And Owen’s life is well-lived, indeed. He is a charming man, a natural leader, and a deep thinker.
I write this review as an Autistic adult, myself, and I found much in this movie that made me rejoice. I confess that I was troubled by some of the language used, for example when Owen’s father talks about feeling as if someone had kidnapped his child, then later discovers Owen was “still in there” and sets himself about a “rescue mission” to “pull him out” of the “prison of autism.” I was torn at those points in the movie, between an empathy for Owen’s family, feeling themselves at a loss to communicate effectively with their child and a heavy feeling in my heart at hearing an Autistic person described that way.
But I came away from the movie realizing that Owen, himself, had similar feelings about his relationship to the world. While he never directly said, “being an Autistic child was like living in a prison,” he talks about feeling so overwhelmed by all the sounds around him that fought for his attention and made people’s voices “a garble.” And when Owen talks about his glop years, he is clearly distressed by how badly he was bullied and how lonely he felt.
Ron tells a story of connecting with Owen through a hand-puppet of Iago, the parrot from the Disney animated film Aladdin. When Ron spoke to Owen through Iago, Owen saidthat he was sad because he had no friends. I realized that, as much as I hate the phrase “prison of autism” and how it puts all the blame for communication barriers on the Autistic person and implies that we are the ones who must do all the work to enter someone else’s world, Owen’s experience of growing up Autistic must have felt very much like being imprisoned in glop.
I also came to terms with Ron’s use of language because he didn’t simply decide that Owen was “locked away” and had to come join “the real world,” but, together with his wife, Cornelia, and Owen’s older brother, Walter, he entered Owen’s world. When the family realized that Owen was using Disney movies to communicate, the whole family used Owen’s love of Disney as an entry portal to join him in his world. That was what made this movie so beautiful to me: that the family encouraged Owen’s deep love for Disney and found their way into his world. Suddenly autism isn’t as much of a “prison” when the whole family has opened that door with love and performed their “rescue” by entering and joining Owen.
I recommend this movie to anyone with a compassionate heart. Owen will charm you. His life progress will cheer you. The way Owen feels his pain deeply will move you. Owen’s ability to process his pain and move through it to the happiness beyond will impress you. Owen is a man with a powerful vision of justice, loyalty, and independence.
While his father produced it, this is Owen’s film in every aspect. Owen’s parents and brother worry about what will happen to Owen when his parents have aged and passed away, but Owen will be just fine and we, the viewers, see that when Owen pauses The Lion King to ask the Disney club he formed at his school, “what was Mustafa teaching Simba?” Members of the club offer insightful responses and Owen agrees, summing up their words by saying, “when our parents can no longer help us, we have to figure out things on our own.”
Owen is figuring things out. He is moving forward into the world, “a little bit nervous and a little bit excited,” and discovering that he can succeed as an adult without losing the magic and wonder of childhood. He has memorized every Disney film and he has internalized the valuable lessons they teach about friendship, courage, and honor.
His parents still get teary-eyed when they talk about the early days when Owen was first diagnosed with autism. But only moments later, they are clearly bursting with pride at what a lovely, strong man Owen has grown to be. Owen is, in his own words, “a proud Autistic man.” The viewer will leave the theater feeling proud of Owen, too. I found his journey through the darkness of glop and back into the light, with the help of the timeless Disney stories, inspirational for my own journey through the glop of anxiety and depression, loneliness and bullying, isolation and deprivation. Owen has saved his own life with stories and, in the process, become a storyteller in his own right.
Owen’s prison was not autism. He is still Autistic and he will always be Autistic. Owen’s prison was isolation from others. What saved Owen’s life was not being pulled out of autism, as if that were even possible. (It’s not. Autism is how his brain is wired and as deep a part of who he is as the Disney stories he loves so much.) What saved Owen was communication. When Owen’s family learned how to communicate with him, they opened a path of connection that grew stronger every day.
For me, the strongest messages Life, Animated brings to parents of Autistic children is to never give up on finding a way to communicate with your child and never give up on helping your child find a way to communicate with the world.
At one point, Owen communicated by repeating a line from The Little Mermaid over and over: “just your voice. Just your voice.” Owen’s pediatrician said it was merely echolalia, signifying nothing. Ron seemed to agree with the assessment on the surface, but beneath that agreement, he clearly harbored a secret hope that it did signify something. In my opinion, Ron was right. Echolalia is communication, as many parents of Autistic children who speak in quotes will quickly tell you. Many Autistic adults who were echolalic when younger (or still are as adults) but have developed a more independent voice will agree: when they were, or are, echolalic, communication is still happening on their part, even when it’s not getting picked up and understood by the recipient.
Ron did not so quickly dismiss the echolalia as meaningless. Moreover, at one point in the film, Ron extends the question of meaning, asking, “who decides what a meaningful life is?” Ron never directly answers that question, but he doesn’t have to. Owen has a meaningful life by anyone’s measure.
But the only measure that really matters in the end is Owen’s. Owen said he didn’t feel like a hero; he felt like a sidekick. But in re-making the Disney canon into a story that was truly his, he rose to become a hero among sidekicks and the protector of them all. Owen has crafted a meaningful life on his terms.
Life, Animated is a celebration of communication, of victory, and of an Autistic life well-lived. I hope you have a chance to see it soon yourself. The film offers much to think about and discuss as our culture struggles to understand what autism is and how Autistics can be welcomed and honored as full participants in society. We can be helped to find our own way in the world as narrators of our own life stories.
[image description: a red fire alarm box that says in emergency break glass but inside the glass instead of a handle to pull for the fire alarm there is a stack of hundred dollar bills.]
Welcome to the new, permanent location of my blog. I own this domain and have, effectively, done the online equivalent of moving out of the dorms and into my own place. What better way to celebrate than writing what I’m about to write about financial independence.
I’ve written a good bit about preparing your children for the world. It’s especially important if your child is Autistic to prepare them for the world with specific advice about how the world works. So often, we need to have things spelled out for us. We need step-by-step plans. We need to get a peek into the future and know what to expect. I know some of my Autistic friends are great at spotting patterns and protecting themselves, but I, as you probably already realize if you’ve been reading my writing for more than about two minutes, was not so lucky. I learned a lot about how abusive the world can be and I learned it in what they call the School of Hard Knocks. I’m still learning it. I still get knocked up against pretty hard by a difficult world.
Being on disability, I’m not permitted to have savings. I’m going to explain to you now why that is so dangerous. It’s going to scare you. It should scare you. I hope it scares you into action. The ABLE Act is great and will help a lot of people, but there are restrictions (and that’s why I wrote last year about the importance of saving every scrap of documentation of disability while your child is young.) The ABLE Act is a new law that allows disabled people to have savings accounts (a single 529a savings plan of up to $100,000, permitting donations of up to $14,000/year), to be used for specific purposes, without losing disability benefits. That’s huge and could affect nearly 6 million disabled people, although it’s only begun being implemented in a few states so far. But the catch is that you have to have a disability onset before age 26. And, more than that, you have to prove that date of onset and get the government to agree with your proof.
My age of onset is long, long before age 26 and I have documents from age 19 that prove it…or should. The government has looked at my paperwork, documenting institutionalization for the same disability I’m currently collecting SSI for having, and declared that it doesn’t count. So I can’t use the ABLE Act to build a savings account to save me in case of disaster and I can’t switch to SSDI Adult-Child benefits (which would increase my income and put me under a much less draconian set of rules than I currently live under on SSI.) I’m working toward becoming self-supporting, but I’m nearly 50 now and still barely earning any income. There’s a strong chance I may never achieve my goal of self-sufficiency and may never live at or above the poverty threshold.
But I digress.
Today I want to talk about why it’s so important to create a world where disabled people are able to have savings. And I want to start with a Reddit thread that’s in the process of going viral.
A friend on Facebook shared this link. I’ll give you the link but I’m also going to summarize it for you because it’s a long link (and I do recommend reading every single comment on it if you do go there. And I do recommend going there. It’s both instructive and amusing–that schadenfreudian amusement of watching an abuser in distress about getting what’s coming to him.)
Here’s my summary of what transpires on that thread: A man hit his girlfriend. She went away for a few days but came back. He apologized. She accepted his apology but lost trust in him (as well she should have.) When they moved from their apartment to a nicer apartment owned by the same landlord, she gave him airy dismissals when he asked about signing the lease and he accepted them because he liked letting her deal with the numbers and money and stuff. She had good credit and his was trashed so her credit got them the apartment in the first place. He didn’t think much of it when he asked about signing the lease and she said, “oh, that’s all taken care of” or something equally breezy.
Fast forward and he’s getting angry again, they’re having “spats” (his word for it) in which the police arrive to settle things. Then one day he goes to work and comes home to find all her stuff gone and a lawyer serving him a document requiring him to move out within 45 days and not contact his (former) girlfriend. He’s distressed and outraged but can do nothing – she has played her hand well and he will be gone and she will get the nice apartment back and go on with her life minus one abuser.
People are, justifiably, applauding this woman’s bold move. She is, quite understandably, a hero in her own life story and a role model. She got out of an abusive relationship without putting herself at physical risk to do so. There’s just one thing: this smooth and bloodless self-extraction is not available to most people in situations of domestic abuse. The woman had a lot of resources available to her that Autistic adults often do not have. And one of the biggest ones? Savings.
This is why I keep telling you to work harder to extend the ABLE Act. It’s great that it helps millions of people. That’s not enough. This is also why I keep telling you to teach your children how to say no and mean it and back up their no with action.
I have a book coming out very, very soon. I don’t have a specific release date, but it’s teetering on the threshold even as I type. It’s called The ABCs of Autism Acceptance, published by Autonomous Press, and I have a whole chapter about the abuse that Autistic people cope with every day. The statistics are so huge, even my jaw dropped when I was researching it and I am hard to shock when it comes to the knowledge that Autistic people are vulnerable to victimization (yes, it’s chapter V in the book. How did you guess?)
Not having financial resources is one of the things (not the only thing, but a huge thing) that keeps us so vulnerable. Even with all my experience and all my knowledge and all my determination for self-determination, I still ended up in a situation in April of this year where I needed the police to come supervise as I left someone’s house to make sure I was able to leave with all my possessions and without being physically harmed. It could have been a lot worse than it was. And I was lucky that I already live in my van because otherwise I might not have even tried to leave, knowing I had no money and no place to go.
In the Reddit thread I’ve linked above, one person wrote a comment in which they included a link to a sort of “choose your own adventure” story about a young professional woman who gets trapped in an abusive relationship and an abusive job due to financial pressures. The story then “rewinds” and tells itself again with the young woman choosing to build a (pardon the language) “Fuck Off Fund” so that she doesn’t get stuck in a sexually harassing job and with a verbally and physically abusive boyfriend because she has savings. She has a minimum of $3000 savings, which is more than I’m allowed to have. The government would cut off my benefits if I had $3000 in savings and I’m not an up-and-coming young professional so that’s a pretty big deal for me. Here’s the story. I also recommend reading it, even though I’ve just given you a pretty good summary of what you’ll find there:
No matter what you call that savings account, it’s a lifeline. It’s a way out of abuse. Autistic people get abused every day: by romantic partners, by landlords, by bosses, by neighbors, by family, by roommates, by caregivers. The list goes on. We are incredibly vulnerable because we live in a world that has kept us incredibly vulnerable. So many of us live on disability income that functions under legislation that keeps us in a child-like state our entire life, stripping our autonomy and self-determination. Another large slice of our demographic are chronically underemployed, struggling to get by on minimum wage or less — and I’m talking about young people with bachelor’s and master’s degrees in this group. The super-successful among us who get held up as cultural icons (I don’t actually have to name their names, right? You know who I’m talking about.) are the exception, not the rule.
We Autistics deserve something better. We deserve a better life. And we deserve a savings fund. Sure, some people will fritter away their money like the first example in the “F*ck You Fund” article I’ve linked above. But for so many disabled people, for so many Autistic adults, it’s not a case of frittering anything away because we don’t even have it to start with.
When you are preparing your child for the world and preparing the world for your child, think about these things. No matter what future you envision for your child, make sure it’s one with an emergency savings fund and protected access to it — protected from victimizers who would try to take it for their own and protected from those who would try to deny your child access to it in times of genuine need.
And beyond that, educate your child to protect them from abusers. Teach them that no means no. Teach them to own their bodies and money and minds and lives. Teach them to be strong and proud. Whether they’re headed off to college and a career or headed into a life of round the clock support, teach them. These are scalable skills that can be tailored to any life, any life situation. The way I use my skills of self-protection as a traveling vandweller will look different from the way an Autistic university professor uses skills of self-protection and different from the way an Autistic living in a group home uses skills of self-protection, but we can all be taught how to own our power and defend our boundaries and protect our lives from the predators that all of us are going to encounter in our lives because Autistic vulnerability does not respect these apparent differences and strikes hard at all of us.
There is so much more I could say about this, but I have a lot to get done today, so I’ll just stop here. I encourage you all to discuss these things in the comment section. Share resources with one another. Get to know one another. I have a wide variety of readers, from fellow Autistic adults to parents of Autistic children and parents of Autistic adults to professionals who work with Autistic people and our families in many different capacities. Get to know each other and talk about this important issue and help all of us move forward when it comes to protecting Autistic lives without removing Autistic autonomy and self-determination.
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