A revised posting of a blog post on my blog: www.elliecastellanos.com
The American Psychiatric Association is proposing to change how children are diagnosed with the current diagnoses of Autistic Disorder, Asperger's Syndrome, and Pervasive Development Disorder, Not Specified.
This diary is intended as OPINION. Any attempt to jump down my throat for having an opinion will be unappreciated.
I did a search to see if this had been diaried before and didn't see any, but I'm not very good at the searches, so there you have it.
Link to the APA page listing the criteria needed to diagnose an individual with Autistic Disorder.
It appears that they want to eliminate the diagnosis of Asperger's altogether and lump everyone into the huge, vague diagnosis of Autism Spectrum Disorder.
This proposed change is expected to effect the rate of diagnosis of autism, which I'm not opposed to, but I think to "un-recognize" Asperger's as a diagnosable disorder is a mistake, and will leave many, many struggling young people and their parents without resources.
On the part of the loved ones of the more profoundly affected, I'm extremely disappointed in this decision, and am hard pressed to understand their reasoning behind this dramatic change.
I have felt for a long time that we need to do more to separate these disorders, not less. Put my moderate to severely affected daughter in a room with an Aspie her age, and you will not be able to find much in common between the two kids. I in no way discount the challanges that Aspie's face--in some ways I think they have it worse than profoundly affected kids like Ellie, in that they have to fight to be recognized for who they are, they have to fight for services, and tney struggle everyday to fit in with peers. They are often weighed down with their differences (although some Aspie teens have to forbearance to celebrate their differences--bravo to them!)
My daughter Ellie could care less what peers or society or pretty much anyone on earth thinks of her. She exists in blissful ignorance of her differences and what they might mean to her future. I never have to fight for services for Ellie, in fact, I sometimes turn down offered services because it's just too much! Ten minutes with Ellie will convince any professional that Ellie needs intensive, personalized intervention and as much one-on-one instruction as possible.
The one thing i think everyone can agree that Aspie's and more severely effected kids like Ellie have in common are problems such as anxiety and compulsion.
But honestly, how many people out there in the U.S. today suffer from those problems to the extent that they require treatment? Hundreds of thousands! Is that enough to lump together this very diverse group of kids?
I think clinicians should be making roads to finding sub-sets within autistic populations. If they want the primary diagnosis to be Autism Spectrum Disorder, then ok, I can live with that. But we must have additional diagnostic criteria within that category.
The link listed above allows a user to log in and make comments. Whether these comments will make an impact is anyone's guess, but I think it's good to make our feelings known.
Updated: To those of you who vote in the poll, I'm curious to hear what your reasons are in the comments. Especially those who are voting that they agree with the proposed changes. I'd like to know why people agree or disagree with the changes.
A Very Helpful Comment from p gorden lippy that I'd like to add to the diary:
For those less familiar with the subject under discussion here, Asperger's was identified in Switzerland in the '40's and became an official Dx of the American Psychiatric Association in their "bible" in 1994. AS kids are often extremely bright but may have severe anxiety and great difficulties in social situations. They are often similar to savants, a la Rain Main, who can memorize and recite facts like crazy, exhibit compulsive fascinations and repetitive behaviors, and often have severe deficits in "executive function," i.e., mature and savvy decision making, and are often socially clueless and ostracized.
The Dx of AS has created a sense of community among "Aspies," as they often call themselves, and they contrast that from most of the rest of us, whom they are amused to call "neurotypical."
The problem with Asperger's as a Dx is that it is simply a matter of degree, and putting it "on the spectrum" of autism could conceivably improve access to services in some cases. That it could cause a cut in available services is, IMHO, a bit of an overreaction.
I fear that further subdivisions might only muddy the waters and allow for more mis-diagnosing rather than improving the situation. The APA site you link to has a place for comments, and I would encourage any and all to visit and read and contribute. Also discuss with your mental health professionals about this and encourage them to contribute to the discussion.
Finally, unless and until physiological cause(s) are identified - an extremely active area of current neurological research - ALL diagnoses will be operational, or symptom based.
Additional Over-Update: The biggest change in these diagnostic criteria effect the Asperger's and PDD/NOS diagnosis. For comparison:
Current DSM criteria for 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:
(a)
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
(b)
failure to develop peer relationships appropriate to developmental level
(c)
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)
(d)
lack of social or emotional reciprocity
2.
qualitative impairments in communication as manifested by at least one of the following:
(a)
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 gestures or mime)
(b)
in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(c)
stereotyped and repetitive use of language or idiosyncratic language
(d)
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 one of the following:
(a)
encompassing preoccupation with one or more stereotyped patterns of interest that is abnormal either in intensity or focus
(b)
apparently inflexible adherence to specific, nonfunctional routines or rituals
(c)
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
(B)
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.
(C)
The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder.
Current DSM criteria for Aspergers:
DSM-IV DIAGNOSTIC CRITERIA
FOR ASPERGER'S DISORDER
A.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 to other people)
(4) lack of social or emotional reciprocity
B.Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least 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
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(4) persistent preoccupation with parts of objects
C.The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D.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).
E.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.
F.Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
Current Diagnostic criteria for PDD/NOS:
This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills, or when stereotyped behavior, interests, and activities are present, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes atypical autism --- presentations that do not meet the criteria for Autistic Disorder because of late age of onset, atypical symptomatology, or subthreshold symptomatology, or all of these.
Proposed Diagnostic criteria for Autistic Disorder:
Must meet criteria 1, 2, and 3:
1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:
a. Marked deficits in nonverbal and verbal communication used for social interaction:
b. Lack of social reciprocity;
c. Failure to develop and maintain peer relationships appropriate to developmental level
2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:
a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
b. Excessive adherence to routines and ritualized patterns of behavior
c. Restricted, fixated interests
3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)