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. 


6 comments:

  1. As a mom of a son on the spectrum...this is very scary! We are in a fight right now to get him more help w school...but because he doesn't have "behavior" issues (do to being medicated) they think his academics are OK...not much academics in Kindergarten so its interesting. Moral if the story..if I unmedicate him he could probably get more help..this makes no sense to me. Because he's "high" functioning he'll do fine??? Really, cause he still can put on his own shoes it wipe his own butt! So changing the criteria of the spectrum also scares me!!!!
    These children already go through so much, why make it worse!? (Also us parents!)

    I love ur blog btw!!

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    1. I totally understand you about the taking him off his meds... he was just evaluated for OT at his new school and he is not eligible because he tests well... I have fought for everything he has gotten this year- I still have plenty of fight- but I shouldn't have to...Thank you for your comments- and I am glad you are a reader!

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  2. When I saw this news yesterday, I was terrified, too. My son was 6-almost 7- before we recieved a diagnosis of HFA/AS. It was a life changer; it fit my boy so well, the world became clearer. Once we had the diagnosis, I began doing everything from visual schedules to video modeling, and it started working.

    My son has no cognitive delays, but his speech has always been stilted and pragmatically disorganized. I literally have to take a minute to translate every sentence he says into what he actually means. His social functioning at 10 years old is that of a 5 year old on his best day. Because he has no cognitive delay, he hasn't been eligible for any accommodations. Thankfully, we're in a well-informed school district with a strong autism program and highly trained teachers and administration who are willing to make accommodations on the sly in order to help my son succeed, and I have been a loud and proactive advocate, unwilling to take ignorance for an answer.

    It was just two days ago that the SPED coordinator called and told me they were going to do a 504 plan evaluation and that I should bring his diagnosis paperwork. I was so excited when she called, I could have reached through the phone and kissed this woman - the same woman I'd bawled my eyes out to only four years ago when she told me he was ineligible because his academics weren't affected. He's still academically on target, but the wonderful teachers, principal, SLP, and counselor are pushing because of his social delays. A 504 plan means that the transition from elementary to middle school won't be so traumatic. It means that at the beginning of every year, I won't have to show up to meet the teacher day with guns fully loaded with information and sidearms ready to fire the Mean Mom grennades.

    Two days ago I got the call, yesterday I read this news. What does this mean? Will my son be put on a plan only to have it yanked out from under him just when he needs its support the most?

    As a psychology graduate student, I took a class on psychopathology from one of the country's leading neuropsychologists. It was an interesting class in many ways, but the one thing I learned from that class that I cannot ever forget is how arbitrary and politicized the writing of the DSM is. This is not a book based on empirical data, it is a book based on tit-for-tat and who's who. These are the same class of brilliant "scientists" who brought us the diagnostic code for homosexuality as mental illness. We know how that turned out!

    I hope for all of us how might be affected by these changes that the diagnosticians now know enough to make the judgement call that will help the individual in front of them, whether what they see full concurs with what the holy-of-holies calls "austism spectrum disorder." Because, when it comes down to it, a psychiatric diagnosis is just that - a judgement call, a gut feeling. Let's just hope that in the last 17 years there has been enough training to make the right call when it's needed.

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    1. Wow- thank you so very much. The Boy has a cognitive delay- and he has an odd stutter when he talks- it's more of a breathing issue...strange. Dyspraxia has also been talked about- but the new school district dismisses that. It seems as though everything is so politicized.. my other theory is MONEY.. the possibility of so many millions of dollars being spent on autism that could be funneled elsewhere- well that can't happen.... UGH. Thank you for your comment, and your insight. It is much appreciated.

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  3. Wine and women
    Balm for the soul
    This floating world is
    Women and wine
    Just a taste, and now
    Karma leads me to this fate
    Praise the lord, praise the lord!
    To heaven or hell,
    Women and wine,
    You and me, babe
    Till the end -
    With a honey like you
    With me in hell,
    CA Wine Club

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  4. I've been trying to get my high-functioning daughter diagnosed. She likely would fall under PDD instead of Austim or Aspergers. She is 1/2 year behind in all the school goals, and with a lot of help has stayed at that level without falling futher behind. If she does not have a "diagnosis" within the next 15 months, she'll reach an age in which her IEP will be limited and her assistance basically cut in half or to a third of what she now recieves. With the proposed changes, she will not qualify for a diagnosis and will begin having educational problems. She's worked so hard for her goals and made so many strides. She's intelligent, but the processing issues cause problems. So frusterated. We are now on the waiting list for the autism clinic for evalation... it will take about 9 months to be seen. I just want my daughter to be able to recieve the help she needs and this may make things much harder.

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