How long ago did you get a diagnosis?

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Magicfly
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24 Jul 2008, 12:28 pm

I got my 'official' diagnosis 3 days ago

I'm 31, was taken for numerous assessments when I was 2 but that was in 1979 so I don't even think Hans Asperger's work had been translated into English back then?



chocoholic
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24 Jul 2008, 6:19 pm

I was diagnosed with classic autism before I turned 2, and a couple years later rediagnosed with PDD-NOS, which is my official diagnosis today. This was back in the 80s. I'm 25 now.



JohnCounsel
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24 Jul 2008, 8:11 pm

I was diagnosed in December 2002, 6 years after being misdiagnosed as mild Bipolar, mild OCD.

Asperger's Syndrome was not officially added to the register until 1994, so no formal diagnoses were made prior to that.

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Last edited by JohnCounsel on 25 Jul 2008, 6:05 pm, edited 1 time in total.

Shadowbound
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24 Jul 2008, 9:29 pm

hmm I was around 7 or 8 so about 20 years ago. I think I was lucky.



Jael
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25 Jul 2008, 5:10 pm

I am 44 years old and I was diagnosed 3 days ago! :)



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26 Jul 2008, 2:02 am

4 years or so. I was 21 or 22. I'd have to look at the report, but I'm too lazy to get up. :/



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26 Jul 2008, 7:57 am

I was diagnosed 10½ months ago or something like that (6th of September 2007), at the age of 29.



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26 Jul 2008, 8:12 am

Almost a year ago, at age 18.


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26 Jul 2008, 9:59 am

I got dx-ed when I was 16. But I've had signs since I was a little kid.


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26 Jul 2008, 12:42 pm

I think I was diagnosed with Asperger's when I was 14, about 14 years ago. As for your initial question Droopy, as I understand it, Asperger's has only been a diagnosis since 1994. HFA is not really an official diagnosis but the high functioning end of autism. A lot of adults with Asperger's have only been diagnosed as adults and a lot maybe undiagnosed simply because it's such a new diagnosis.



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26 Jul 2008, 9:26 pm

I was diagnosed with AS two months ago, after having to wait months after scheduling an appointment at a psychiatrist before the appointment actually happened.



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26 Jul 2008, 11:24 pm

I was diagnosed with NLD a little less than a year and a half ago, at 22.



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27 Jul 2008, 12:21 am

Jono wrote:
I think I was diagnosed with Asperger's when I was 14, about 14 years ago. As for your initial question Droopy, as I understand it, Asperger's has only been a diagnosis since 1994. HFA is not really an official diagnosis but the high functioning end of autism. A lot of adults with Asperger's have only been diagnosed as adults and a lot maybe undiagnosed simply because it's such a new diagnosis.


From what I've been reading here it looks like AS started being diagnosed in the 90's. So before that I'm assuming there was really no diagnosis for those with HFA. Sounds like you were either Autistic or not...or just different and bullied in school. That sucks. It's like there's a big gap between Autism and Asperger's Syndrome. It's interesting though how more and more people are getting diagnosed at a faster rate. There's more here diagnosed in the last year than prior to that. And it's sad that so many people out there are Aspies and don't know it but it sounds like they just haven't got the diagnosis yet or never will. I would say most never will.



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27 Jul 2008, 12:59 am

I was diagnosed when I was seven, I am now twenty-one so that makes fourteen years now.



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27 Jul 2008, 1:12 am

Droopy wrote:
Jono wrote:
I think I was diagnosed with Asperger's when I was 14, about 14 years ago. As for your initial question Droopy, as I understand it, Asperger's has only been a diagnosis since 1994. HFA is not really an official diagnosis but the high functioning end of autism. A lot of adults with Asperger's have only been diagnosed as adults and a lot maybe undiagnosed simply because it's such a new diagnosis.


From what I've been reading here it looks like AS started being diagnosed in the 90's. So before that I'm assuming there was really no diagnosis for those with HFA. Sounds like you were either Autistic or not...or just different and bullied in school. That sucks. It's like there's a big gap between Autism and Asperger's Syndrome. It's interesting though how more and more people are getting diagnosed at a faster rate. There's more here diagnosed in the last year than prior to that. And it's sad that so many people out there are Aspies and don't know it but it sounds like they just haven't got the diagnosis yet or never will. I would say most never will.


Actually, initially most autistic people were what would now be considered high-functioning. Kanner even wrote a letter or paper or something in the 1950s or 1960s on how the diagnosing of people who would now be considered low-functioning, seemed to be diluting his label. (I disagree with him, but oh well.)

But as far as officially in the DSM, autism's been there since 1980 with criteria that practically no autistic person (including those diagnosed back then) actually fit.

But also in 1980 there was this diagnosis:

Quote:
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.


But the problem with that one is that the onset is described as later than birth, and most autistic people were different from birth. Other than that, it's an example of less stereotypical autism, and would in fact (if it weren't for criterion C) cover most people who were diagnosed with autism under the restrictive criteria. (Which basically, wouldn't fully fit just about anyone, even the people they were said to fit.)

The 1987 criteria pretty explicitly allow for autism that would now be called high-functioning, too.

Quote:
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)


There was also PDD-NOS in 1987:

Quote:
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.


And yes it was 1994 when AS came into the picture, and so did changes to the autism and PDD-NOS criteria. But certainly it was possible to be so-called high-functioning, and to be diagnosed, prior to then. The main problem was that doctors didn't know a lot about it, and had their own stereotypes they adhered to, as well as doing things like "well that was eye contact so he can't be autistic" which is silly.

Remember the criteria for autism in 1980 were:

Quote:
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.


It's criterion B that most autistic people wouldn't meet, because just about all autistic people react to other people in some fashion or another, it's just not a typical fashion.

In the 1980 criteria I'd have met it if not for Criterion B (but that's true of almost all auties out there), and there's a possibility that my early interaction style could have been misinterpreted by someone diagnosing. Our family doctor was simultaneously old-fashioned and unorthodox, so he wouldn't have noticed, it wasn't in his frame of reference. And then in the 1980 criteria I'd have met the PDD criteria if it weren't for the age of onset thing.

Ever since 1987 I've always met official criteria for autism, but was not diagnosed until 1995 because of sheer lack of knowledge. My mom says if my brother and I were born today we'd have been diagnosed at the age of two or under, very easily. (My brother was born in 1966 back when autism was under childhood schizophrenia in the DSM. I was born in 1980 but our doctor did not keep up to date on developmental disabilities or much else. Both of us got evaluated at various points in childhood but nobody knew a name for whatever we were like, so they came up with odd descriptions and fairly fanciful explanations. It's like that scene in Rain Man where they go into a clinic and the nurse kept asking "you're saying he's ARtistic?" -- that's what it was like in most places in the 1980s, it was in the books but took a long time for anyone to read them, and now even today there are professionals stuck on the 1980 definition or even on earlier ones.)


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27 Jul 2008, 1:32 am

I met the DSM-III for Infantile Autism, albeit retroactively (my mother was there to confirm it). I had affective contact for her (though it was of the mechanical clinging type without social interaction), but this was still classed as meeting Criterion B of Infantile Autism, as it was with no one else. Albeit, I was deemed as "high-functioning" when this criteria was used too.

There was also "Atypical PDD" in the DSM-III, which would allow for people with Asperger's/"less-aloof" Autism to be included. Childhood-onset PDD would allow for those with Asperger's too.

O, and it's worth mentioning that they consolidated Childhood-onset PDD in with Infantile Autism in the -R as they found out they were the same disorder (the irony). This is why the -R of the DSM-III is far better criteria, as they implemented all of the research since the inception of the basic -III. It also included all the various types of Autism (aloof to passive).