Friday, January 20, 2012

Changing the definition of Autism will not end the Epidemic- but it may ruin lives.

If you have a child on the spectrum, or with ADHD, or any of the acronyms associated with behavioral and/or  psychological  disorders then you are quite familiar with the DSM-IV

Right now, the DSM-IV criteria for Autistic Disorder is as follows:

A. 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 gesture 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 and restricted 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 precoccupation 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

The criteria for Aspergers Syndrome/High Functioning Autism (HFA) are:

An Asperger/HFA screening tool must meet all six areas defined by the DSM-IV description of Asperger Syndrome (A-F below) to qualify for a positive rating from First Signs:
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.

The latter is what The Boy is diagnosed with- High Functioning Autism or HFA. I can't tell you how many times I have heard someone say "Well, he doesn't LOOK autistic"   because as we all know autism has so many physical identifiers (heavy sarcasm).  If you read the criteria for Aspergers/HFA  and if you met my son- you would see that even this diagnosis isn't all correct. He DID have a speech delay. He DIDN'T have age appropriate self help skills, and there IS a significant cognitive delay. But under A & B- he meets most of the criteria. *Sigh* It's confusing, I know.

Now- a so called panel of "experts"   is changing the definition of autism- because apparently the current definition is too "vague" (refer to the above references- how vague is that?)  You can read the article here How many individuals is this new definition going to exclude? There are no numbers yet- but I am guessing it will be a staggering amount. "The proposed changes would probably exclude people with a diagnosis who were higher functioning."   

This absolutely terrifies me. MY son is considered high functioning- yet with a cognitive delay of 1.5-2 years, inability to write legibly, struggles in math and reading comprehension, and definitely issues with social situations- he needs all the supports he can get- which now that he is "mainstreamed" are very few. But he does get OT, he does get Speech, and his work is modified, and he is allowed to use his AlphaSmart(keyboard) for a good portion of his assignments. Would this all be taken away? Would he be put in a fully mainstreamed class, with no supports at all- left to struggle and regress? Hell no- because he would be home schooled. A possibility I have been researching for a couple of months now.

 His insane preoccupation with dinosaurs could be the foundation of lesson plans. I could teach him Math, Science, Reading, Spelling and History- all through dinosaurs. And he would be more interested, more attentive and still LEARN. 

And what about adults that depend on social security and other services? What happens to them? Will they be kicked out of assisted living environments? Will the caregivers be able to support them if their social security benefits are stopped?  The impact of this spans all age groups, ethnic groups, financial brackets you name it - of those diagnosed with Aspergers Syndrome, HFA, or PDD. 

What is your opinion on this? I am scared, this is a life changer for so many, and I am desperately trying to form a contingency plan. Because above all else- The Boy comes first. HIS needs, academically, socially and emotionally.  This is gonna be a rough road for sure.