5:18pm June 11, 2012

➸ chavisory's post-it notes: goldenheartedrose: ceilingvriska: While I love my little brother with...

feliscorvus:

goldenheartedrose:

ceilingvriska:

While I love my little brother with all my heart and wouldn’t have him any other way, can I just point out that a few years ago, the percentage of children with autism was about 1 in 300, and now it’s dropped to 1 in 88?

It’s been at around 1…

Yeah, a lot of this (what chavisory wrote, still figuring out this “reblogging” business) is similar to my own experiences re. diagnosis and early evaluations and what-have-you. I was also (having been born at the end of 1978) first evaluated in the early 1980s, and as a result of my first evaluation I was placed in a local Special Education Pre-School program (which was part of Head Start/”early intervention” where I lived at the time).

Unfortunately I don’t have any records from the first evaluation — the only reason I know about it at all is that it was mentioned in a slightly later report I do have (taken when I was four and had been in preschool for a while already). But my placement in that preschool was based on “concerns about [my] social and emotional development”, and there were comments in the second report about how I had had “no positive play experiences in [my] neighborhood” and whatnot.

Mind you, I was verbal in the sense that I had a large expressive vocabulary, but very “hit or miss” as far as actually being able to communicate, and peppered with a lot of verbatim-memorized whole phrases that I said without really having a clue what the words meant. And I was also hyperlexic (started recognizing letters before I was a year old and was decoding text by two) which is actually strongly correlated with autism, though I don’t know if this was well known in the early 80s.

So there was no question that “something was up” with me right from the beginning, and in addition to attending special-ed preschool I ended up repeating kindergarten (for what were described as being developmental/behavioral reasons), and for a while in elementary school and junior high actually went back and forth between regular class, “gifted program” class, and “resource room” (for special-ed/LD kids). I was never given any concrete reason for why this was happening and I remember being puzzled about why I was being “singled out” for this sort of thing — all I was told was stuff like “you need more help staying organized”, etc.

…and all that said, to this day I actually have no idea whether I might have received an earlier/tentative diagnosis of *something* before I was overtly diagnosed with ADHD at age 17 and then PDD-NOS/Asperger’s (my records have both in them, don’t know if one takes precedent or what) at age 25. Either way, knowing what I know now, I can’t imagine that my experience was all that rare for people, especially girls, who were born when I was.

It consequently annoys the crap out of me when some people appoint themselves the Autistic Pedigree Police and insist that “if you were REALLY autistic, you would have had an official diagnosis at age two!” Regardless of where you were born, or what cultural / economic factors might have figured into your parents’ ability and inclination to have you evaluated, not to mention the evaluators’ biases (“only boys are autistic”, etc.). And it annoys me even more that I’ve managed to internalize the “fear of being pedigree-checked” to the extent that I always get a little nervous telling anyone that I didn’t have the piece of paper until I was in my mid-20s, because I fully expect to be taken less seriously, even though I myself would never pedigree-police anyone else.

I had very similar receptive language development to yours. And similar quirks of expressive language, except I had a noticeable delay. I don’t think you actually qualify for AS in the current system because even though you had language it was largely echolalic and non-communicative, and falls well into the autism (or PDDNOS if you didn’t quite fit that either) criteria for communication problems.

This is very long but be aware it has all the criteria for autism and all the other PDDs since they were put in in 1980. 

I was born in 1980. The year autism entered the DSM. Yes that’s right. It didn’t exist in the DSM before then. Hence fewer people diagnosed. The criteria then required a person to totally lack social interaction – or to look like you did. I sometimes looked like I did but sometimes didn’t. You and I otherwise met those criteria by the way. Just not the pervasive lack of social interaction one – at least not all the time. That criterion has been shown inaccurate anyway, because the vast majority of us do interact, just sometimes too unusually to see. Depending on the doctor I might have been seen as meeting those criteria. 

Here are the DSM criteria for 1980. 

Diagnostic criteria for Infantile Autism

A. Onset before 30 months of age 

B. Pervasive lack of responsiveness to other people (autism) 

C. Gross deficits in language development

D. If speech is present, peculiar speech patterns such as immediate and delayed echolalia, metaphorical language, pronominal reversal.

E. Bizarre responses to various aspects of the environment, e.g., resistance to change, peculiar interest in or attachments to animate or inanimate objects.

F. Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia.

In 1987 the criteria changed. You and I both fully meet those criteria. No question. But it takes time, sometimes decades, for these changes to fully propagate. So just as it took a lot longer than 1980 for people to even look for autism for the most part, it took longer than 1987 for the idea to propagate that autistic people could interact and communicate. Of the criteria I’ve ever seen I actually like 1987 the best, although I don’t really like any of them. 

Here are the 1987 criteria:

Diagnostic Criteria for Autistic Disorder

At least eight of the following sixteen items are present, these to include at least two items from A, one from B, and one from C.

A. Qualitative impairment in reciprocal social interaction (the examples within parentheses are arranged so that those first listed are more likely to apply to younger or more disabled, and the later ones, to older or less disabled) as manifested by the following:

1.Marked lack of awareness of the existence or feelings of others (for example, treats a person as if that person were a piece of furniture; does not notice another person’s distress; apparently has no concept of the need of others for privacy);

2. No or abnormal seeking of comfort at times of distress (for example, does not come for comfort even when ill, hurt, or tired; seeks comfort in a stereotyped way, for example, says “cheese, cheese, cheese” whenever hurt);

3. No or impaired imitation (for example, does not wave bye-bye; does not copy parent’s domestic activities; mechanical imitation of others’ actions out of context);

4. No or abnormal social play (for example, does not actively participate in simple games; refers solitary play activities; involves other children in play only as mechanical aids); and

5. Gross impairment in ability to make peer friendships (for example, no interest in making peer friendships despite interest in making fiends, demonstrates lack of understanding of conventions of social interaction, for example, reads phone book to uninterested peer.

B. Qualitative impairment in verbal and nonverbal communication and in imaginative activity, (the numbered items are arranged so that those first listed are more likely to apply to younger or more disabled, and the later ones, to older or less disabled) as manifested by the following:

1. No mode of communication, such as: communicative babbling, facial expression, gesture, mime, or spoken language;

2. Markedly abnormal nonverbal communication, as in the use of eye-to-eye gaze, facial expression, body posture, or gestures to initiate or modulate social interaction (for example, does not anticipate being held, stiffens when held, does not look at the person or smile when making a social approach, does not greet parents or visitors, has a fixed stare in social situations);

3. Absence of imaginative activity, such as play-acting of adult roles, fantasy character or animals; lack of interest in stories about imaginary events;

4. Marked abnormalities in the production of speech, including volume, pitch, stress, rate, rhythm, and intonation (for example, monotonous tone, question-like melody, or high pitch);

5. Marked abnormalities in the form or content of speech, including stereotyped and repetitive use of speech (for example, immediate echolalia or mechanical repetition of a television commercial); use of “you” when “I” is meant (for example, using “You want cookie?” to mean “I want a cookie”); idiosyncratic use of words or phrases (for example, “Go on green riding” to mean “I want to go on the swing”); or frequent irrelevant remarks (for example, starts talking about train schedules during a conversation about ports); and

6. Marked impairment in the ability to initiate or sustain a conversation with others, despite adequate speech (for example, indulging in lengthy monologues on one subject regardless of interjections from others);

C. Markedly restricted repertoire of activities and interests as manifested by the following:

1. Stereotyped body movements (for example, hand flicking or twisting, spinning, head-banging, complex whole-body movements);

2. Persistent preoccupation with parts of objects (for example, sniffing or smelling objects, repetitive feeling of texture of materials, spinning wheels of toy cars) or attachment to unusual objects (for example, insists on carrying around a piece of string);

3. Marked distress over changes in trivial aspects of environment (for example, when a vase is moved from usual position);

4. Unreasonable insistence on following routines in precise detail (for example, insisting that exactly the same route always be followed when shopping);

5. Markedly restricted range of interests and a preoccupation with one narrow interest, e.g., interested only in lining up objects, in amassing facts about meteorology, or in pretending to be a fantasy character.

D. Onset during infancy or early childhood

Specify if childhood onset (after 36 months of age)

Then in 1994 the criteria changed again:

299.00 Autistic Disorder

A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):

(1) Qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.

2. failure to develop peer relationships appropriate to developmental level

3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)

4. lack of social or emotional reciprocity

(2) Qualitative impairments in communication as manifested by at least one of the following:

1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)

2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

3. stereotyped and repetitive use of language or idiosyncratic language

4. lack of varied spontaneous make-believe play or social imitative play appropriate to developmental level

(3) Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least of one of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

2. apparently inflexible adherence to specific, nonfunctional routines or rituals stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)

3. persistent preoccupation with parts of objects

Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play. The disturbance is not better accounted for by Rett’s disorder or childhood disintegrative disorder.

I’m pretty sure you met that too. The only one where we might differ is I had an obvious period of speech delay. 

One serious problem when you get diagnosed as an adult is that doctors are quick to assume you must have Asperger’s. Which pisses me off because it means people are not recognizing the true amount of us who have autism or PDDNOS. I do not set much store by the categories but if they use them they should use them accurately. To me it’s like there’s a prejudice that someone with autism couldn’t manage to do this or that. 

I was first known to be unusual very early. I had developmental problems with learning to nurse, which is supposed to be instinctive. I lost the little language I had for awhile. I had motor delays. But my parents were very big on letting us develop on our own schedule, especially after raising my older brother with Asperger’s. And when they did seek help they didn’t get any, basically being told they were giving in too easily without making me talk. They did almost get me a leg brace but put me through dance lessons as physical therapy instead. I understood nothing so my mom grabbed my body and molded it into position. 

In preschool they contacted my parents fast. They were big on letting us do whatever we wanted. I didn’t understand that one group stayed in and one went out so they just let me do both. But I acted like the other kids didn’t exist, and if they did approach me and get through to me I started screaming. My mom came to observe and saw me wiggling my fingers. So she wiggled her fingers back. And I enjoyed that so much I didn’t scream if she was there. 

In kindergarten I had a cognitive evaluation.  I had very uneven skills. My expressive language score was high (although it didn’t evaluate whether it was communicative) and my receptive language score was very low. The DSM says this is common in autistic people who manage to develop apparent spoken language. 

Literally every school I ever attended after that contacted my parents about all kinds of problems. I was in counseling by the age of seven by an MFCC who wanted to blame all my weirdness on the trauma of nearly drowning. Everywhere I went I was recognized as bright but things had to be adjusted for me. I don’t have the energy to get into how screwy things got but they were terrible. 

In all this time nobody asked my parents for a full developmental history, and if they had, my mom would always focus on my strengths unless told not to.  Both because she is that kind of person who sees the best in their kids, and because she grew up when the only theory of things like this was it was caused by bad parenting.   I could have been diagnosed at age seven (or even in infancy or early childhood, but especially after the criteria change) but I wasn’t even evaluated by a real doctor. 

I was sent to a bunch of neurologists at age thirteen and was first diagnosed at age fourteen.  At this point things had hit crisis level after I began losing skills that had always been shaky, and losing the appearance of skills that had never truly existed.  And this combined with being pushed too hard in school drove me to suicide. I landed in a mental institution. The psychiatrist immediately thought of autism and careful questioning of my mother (not letting her gloss over my weaknesses) and loads and loads of testing and observation confirmed it. 

From what I’m told, I was quite obviously autistic, enough it could be recognized instantly, but nobody knew enough about autism to do it. And when you lack the real explanation you come up with others – emotionally disturbed, crazy, on drugs, attention seeking. And then you do not remember the sensory experience of seeing someone wiggle his fingers in front of his eyes, you just remember “that guy was nuts”.  And when someone who became a friend saw me twirling in circles and asked who I was, they said “that’s Amanda, she’s crazy”.  So no, I did not look normal, not with people introducing me in that manner. 

So when I was diagnosed, the doctor told my mom that what I had was autism. But that he was going to write down that I had PDDNOS/atypical autism. Because to just say autism in 1995 was like saying hopeless. And if I was hopeless they’d want to lock me up forever without treatment. Turned out they wanted that anyway but he tried. 

Almost a year later I got to find it that change in theories about autism is not like flicking a switch. It’s gradual. Even today there are people who think its a choice the child makes in response to bad parenting. I was taken for an evaluation by the people who wanted to lock me up forever. And they said my mother had caused my symptoms because if they isolated me from her and used strict behavior mod, I behaved better. Hello?!  Autistic people generally respond to behavior mod. My parents convinced insurance to take me to a residential facility instead of the state institution. And they were betrayed by the people who worked there. 

Before I got there they said it was clear I was not schizophrenic.  They asked detailed questions about my development, including asking if being touched burned me.  I had a number of other psychiatric problems and was trying to act like whatever they told me I was. So it was confusing. But these peop,e did something terribly wrong. 

Once I got there and was not gang away, they immediately changed their tune towards my parents. They said I was psychotic since infancy and schizophrenic since childhood. And they said my mother was the cause of it all and I would never get better until she changed. She’s a strong woman but this completely broke her. And all the things they said were, I discovered later, word for word from a book on autism and childhood schizophrenia by Frances Tustin, dated 1971. They had not changed since 1971 and they unleashed this toxic shit on my family. (And on me, literally toxic. They had me on twice the toxic threshold of Clozaril. I had seizures every few minutes. They said that was psychiatric too until I landed in a neurology ER.)

After I got out of there I was put in special ed. After that I went to community college. And around that time I ws re-diagnosed with PDDNOS. And, as insurance was no longer a problem, they finally changed it officially to autism.  I have also been independently evaluated and found to have autism several times for the purposes of SSI.  So it’s pretty clear I meet the straight autism criteria.  Today I would have been diagnosed before age two.  But today people know what to look for. They didn’t when I was a kid. They barely even knew what it was. 

Most of the increase in diagnoses is not autistic disorder diagnoses though. It’s PDDNOS and Asperger’s – much less strict criteria.  And people with those diagnoses were far more likely to be missed. Plus they missed plenty of people with just autism. They called us psychotic, emotionally disturbed, brain damaged, intellectually disabled, minimal brain dysfunction, etc.  this increase in diagnoses is normal for any condition. Fetal alcohol syndrome was only recognized in the seventies and diagnosis slowly increased and then skyrocketed. Especially when they recognized it was a spectrum condition, with Fetal alcohol effects, fetal alcohol spectrum disorder, etc. Yet nobody is claiming that people just drink more. They understand with that but not with autism.

And just for reference, these are the PDDNOS criteria through the years:

DSM-III (1980)

Diagnostic Criteria for Childhood Onset Pervasive Developmental Disorder

A. Gross and sustained impairment in social relationships, e.g., lack of appropriate affective responsivity, Inappropriate clinging, asociality, lack of empathy.

B. At least three of the following:

1. sudden excessive anxiety manifested by such symptoms as free-floating anxiety, catastrophic reactions to everyday occurrences, inability to be consoled when upset, unexplained panic attacks,

2. constricted or inappropriate affect, including lack of appropriate fear reactions, unexplained rage reactions, end extreme mood lability,

3. resistance to change in the environment, e.g., upset if dinner time is changed, or insistence on doing things in the same manner every time, e.g., putting on clothes always in the same order,

4. oddities of motor movement, such as peculiar posturing, peculiar hand or finger movements, or walking on tiptoe,

5. abnormalities of speech, such as question-like melody, monotonous voice,

6. hyper or hypo-sensitivity to sensory stimuli. e.g., byperacusis,

7. self-mutilation, e.g., biting or hitting self, head banging.

C. Onset of the full syndrome after 30 months of age and before 12 years of age.

Absence of delusions, hallucinations, incoherence, or marked loosening of associations.

Both of us met this easily.  Easily. Yet later we’d easily meet even the strict autism criteria. 

DSM-III-R (1987)

299.80

Pervasive Developmental Disorder Not Otherwise Specified

This category should be used when there is a qualitative impairment in the development of reciprocal social interaction and of verbal and nonverbal communication skills, but the criteria are not met for Autistic Disorder, Schizophrenia, or Schizotypal or Schizoid Personality Disorder. Some people with this diagnosis will exhibit a markedly restricted repertoire of activities and interests, but others will not.

We would meet that, except we qualified for autistic disorder. 

DSM-IV (1994)

Pervasive Developmental Disorders

Pervasive Developmental Disorders are characterized by severe and pervasive impairment in several areas of development: reciprocal social interaction skills, communication skills, or the presence of stereotyped behavior, interests, and activities. The qualitative impairments that define these conditions are distinctly deviant relative to the individual’s developmental level or mental age. This section contains Autistic Disorder, Rett’s Disorder, Childhood Disintegrative Disorder, Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified. These disorders are usually evident in the first years of life and are often associated with some degree of Mental Retardation, which, if present, should be coded on Axis II. The Pervasive Developmental Disorders are sometimes observed with a diverse group of other general medical conditions (e.g., chromosomal abnormalities, congenital infections, structural abnormalities of the central nervous system). If such conditions are present, they should be noted on Axis III. Although terms like “psychosis” and “childhood schizophrenia” were once used to refer to individuals with these conditions, there is considerable evidence to suggest that the Pervasive Developmental Disorders are distinct from Schizophrenia (however, an individual with Pervasive Developmental Disorder may occasionally later develop schizophrenia).

We would meet this too, if we didn’t already meet autism criteria. 

DSM-IV-R (2000)

Pervasive Developmental Disorders [also called Autism Spectrum Disorders] are characterized by severe and pervasive impairment in several areas of development: reciprocal social interaction skills, communication skills, or the presence of stereotyped behavior, interests, and activities.

And same with that one.  Here are the Asperger criteria from the DSM-IV in 1994, they haven’t been changed since;

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:

(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction

(B) failure to develop peer relationships appropriate to developmental level

© a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)

(D) lack of social or emotional reciprocity

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(B) apparently inflexible adherence to specific, nonfunctional routines or rituals

© stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)

(D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

Technically, we don’t meet that criteria and if they’d gone by the rules and understood you and your history better, they would have only gone for autism. Or PDDNOS, maybe. 

We both meet the first three parts (as in, I through III). I don’t meet the fourth because of language delay.  Neither of us meet the fifth.  We both had and continue to have serious problems with self help skills and adaptive behavior, and we might have seemed from the outside to lack normal curiosity in infancy, but I’m not sure about that last. I know I certainly looked as if I lacked it some time later. And we don’t meet the sixth because we meet the criteria for autism and that takes precedence. 

So if people were doing things even close to right we would have only been diagnosed with autism or PDDNOS. The reason this bothers me is the stereotype that if you had either of those you’d have been diagnosed young. It becomes a self fulfilling prophecy. Doctors only diagnose adolescents and adults with AS. Then they look at their statistics and find that mid to late diagnosed people are mostly diagnosed with AS. Circular as hell. Fortunately I had a doctor who was adamant I didn’t have AS because my language skills were too screwed up. I have to suspect they didn’t understand things like that about you. Not that there’s anything wrong with an AS diagnosis. I just get frustrated when they insist these categories exist then apply them completely wrong.

The progression of the diagnostic criteria shown here should explain why more of is are diagnosed now than before.  Especially remembering doctors don’t always stay up to date after they learn stuff. So it can take decades to fully shift the definition of something. I even had people in 1996 treating me like it was 1971!

And I hate the pedigree check bullshit. That’s all for political reasons, or sometimes to inflate the egos of autistic people playing lower functioning than thou and I’m the only real autistic person games. It’s all about keeping us quiet.  I once posted virtually all of my diagnostic papers online and still got accused of making them up. Or told fourteen isn’t a child. Or other bullshit. 

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