dx rant from a therapist | Autism PDD
I am partially posting this to torture fred.
I just reconnected with my best friend from highschool. She studied in
France and Germany and has been working as a therapist in an autism
specialty clinic in Germany for the past ten years. (bizarre coincidence)
I wrote a long letter going into much detail about my son's diagnosis
and the problems he has been having. She wrote back saying that in her
-off the work record-opinion asd is the new fashion diagnosis . She
feels that asd is given to too many people who are 'unusual' and that it
really pathologises the variety of human functioning. She feels that this
is partially contributing to less and less tolerance in the school system
and kids that are different but function well on their own terms are
getting stigmatized by medical labels. She is not saying that unusual kids
might not need extra help or individualized attention but that does not
mean that unusual equals disordered.
Now I thought that that was fascinating to hear from someone workig in
the field!!! While I could agree with her or agrue with her (and I am really a
big flip-flopper), I do think it is interesting that there is this reaccuring
philosophical discussion about a medical label.
P.S. Also something else I did not know; Most of Europa uses the ICD-10
instead of the DSM-4. There are a few small differences in diagnostic
criteria for those of us obsessed with minuta.
http://
www.geocities.com/richardg_uk/icd10f84.htmlSee, this confuses me, because I have heard and from personal experience (it took 3 years for us to get a final dx.) that many doctors are very leary about giving this diagnosis. But at the same time the numbers are rising like wild fire!
I figured my daughter would get the aspergers title but she may get the pdd bec. of her delays. Her IEP in FL was dev. delay. but she has major sensory issues. IEP changed when we moved here. She did score a 156 on the brain test. She is 6 yrs old.
O well just a different thought but it included my daughter as pdd in UK report.
http://www.medhelp.org/forums/neuro/archive/11333.html
" The majority of
persons with Asperger's have some degree of language disorder although
their language difficulties may be mild and related only to the use of
language for socialization. "CCF Neuro:Pediatrics MD, RPS
I have heard many professionals say something very similiar, probably about half of the ones we have seen and we have seen well over 10. It doesn't really surprise me to hear it again.This is exactly what Greenspan says in his book The Child With Special Needs. He says that children have developmental challenges or special needs but can not all be lumped under the label of Autism. He says they are more different than similar. He also says that he has seen lots of children progress remarkably well to mainstream schools and the general NT society.
I have seen a couple Aspergers individuals. I've now seen a fair number of children with ASD. My son is very different from all of them. He may, perhaps, share one interest and that's where the similarity also ends. Two different neuropsychs also told us that the term ASD will one day no longer be. Dx will be broken down into the specific challenges or difficulties children have - either speech, sensory or other regulatory disorders, anxiety, OCD, etc...
I do agree with your friend that too many children who are just 'quirky' or 'different' are all being lumped under the ASD label. I also agree that some of these children may legitimately need help in addressing some developmental challenges that may be causing some of their quirkiness but it may have nothing to do with autism. But I'm with your friend, Greenspan, and the two neuropsychs we spoke to - in that ASD is too global and unproductive label. It doesn't recognize the uniqueness of each child.
I didn't used to think this way before. I was influenced by what Greenspan wrote in his book.I can agree and disagree with your friend in this. While it's
important to pinpoint delays and get the appropriate help, not all kids
should be given the dx of ASD. I really look towards the schools
when it comes to the rise in numbers of kids dx'd. They seem to
want to deal less and less with kids that don't fit their cookie cutter
idea of "normal" forcing parents to seek these labels for their kids so
they can get help.
Now take my two, both fit the more severe description of autism.
Yet I have to deal with people who say to me, "Oh that's not a real
disability" simply because soooo many kids are being dx'd lately and
it's finally getting some media attention. Oy!!!!!
[QUOTE=micki]IShe
feels that asd is given to too many people who are 'unusual' and that it
really pathologises the variety of human functioning. She feels that this
is partially contributing to less and less tolerance in the school system
and kids that are different but function well on their own terms are
getting stigmatized by medical labels. She is not saying that unusual kids
might not need extra help or individualized attention but that does not
mean that unusual equals disordered.
l[/QUOTE]
I agree with this so much. I was recently working with a child who was diagnosed, who both myself and her father felt strongly that it was an incorrect diagnoses. She has some minor behavioral issues, and is a little weird, but not autistic (if she were, then I'd have to consider the "highest functioning" child I work with to be profoundly autistic.) I think that this problem is a huge contributor to why so many parents are having such issues getting the services their child needs in school.
maybe x-fragile carriers.
1
in 2000 boys and 1 in 4000 girls are estimated
to be affected.
1 in 260 women are carriers.
http://www.conquerfragilex.org/about.php
Re the tendency to pathologize
Our society does seem to have an ever-narrowing ideal of what's "normal". Developmental milestone charts didn't even exist prior to the 1930s. Society is more complex and demanding, however, so it's certainly appropriate to have tools to help identify who needs extra help in rising to those demands.
And I do think it's better to have a label than to go around struggling, feeling alone and alienated and/or wondering if you're "going crazy" (which one of our forum members did as a teenager). A warm-fuzzy "I'm okay, you're okay" attitude is not necessarily enough.
Re ICD-10
I wasn't even aware of the ICD-10, but since we're in Europe this is probably what was used to diagnose my son.
He was diagnosed with "atypical autism" which in a way seems like a strange choice when "Atypical autism arises most often in profoundly retarded individuals whose very low level of functioning provides little scope for exhibition of the specific deviant behaviours required for the diagnosis of autism."
Thanks for the link.
Whilst I agree that diagnostic labels should not be given out lightly, there is a difference between people that are just a little quirky and people who have differences not just in how they think, but in how their senses process things, how they co-ordinate, how their motor planning works and how they communicate and interact with others and how they learn and perceive things that impact upon their everyday lives.
Incidentally, I never had an official label as a child, but I had plenty of unofficial ones. Stupid, clumsy, boring, cretin, moron (yes, people do think you're stupid even if you're in top sets for some subjects), awful, "makes me sick", immature, naive, gullible, "awww, wasn't she sweet?" So it seems that those labels are acceptable by some, yet a label that explains why my body works as it does, why my mind works as it does and which allows me to explain to others the difference between can't do something and won't do something is viewed as not necessary and overlabelling.
Well, insurance companies here generally go by the ICD-9 or 10 (from what I understand). I think a lot of professionals use the DSM but then use the coding from the ICD-9 or 10 for insurance purposes.
I could be wrong, but I believe one of our posters (kristy I believe?) has a lot more in-depth knowledge of the insurance companies...
I find it interesting that the skyrocketing diagnosis of educational autism has actually followed the implementation of multi-system teaching styles. (ie teaching each lesson for the auditory, visual, and kinesthetic learners, at once). One would expect that teaching style to assist MORE students, resulting in fewer difficulties and thus diagnoses.
As someone who went through public schools in the 60's, with strong verbal skills and poor spatial temporal skills (and hence labeled "gifted," and expected to have uniformly high abilities), I feel that these changes were a vast improvement for ALL students.
So ... where does the line fall, between "style, temperament, and personality," and pathologic or disability?
I would say: where the line falls depends most strictly on ECONOMICS. Do the schools get more outside funding, for having a diagnosis? As long as it is disproportionate to the efffort of creating IEPs, they will diagnose.
Well, with myself and Tom I tend to split things into definite strengths, difficulties/differences caused by social factors and difficulties occurring no matter what the circumstances. Eg with myself a strength is being able to read very quickly, a socially influenced difficulty/difference is not being able to drive and a difficulty in any circumstance is not being able to let go of things to throw them, or react quickly enough to things. With Tom a strength is his ability to remember lots of songs and rhymes, a socially influenced difficulty/difference is his differences in interacting with others and a difficulty no matter what is his inability to ask for things he needs if he can't see them. The socially/environmentally influenced difficulties/differences really just need people to understand that we approach things in a different way and that we may not fit into society, but that it doesn't matter if we are able to approach things in our own way. The difficulties that occur in any circumstance are what I would like us to have help with.
One way to avoid some of the confusion aroudn dx is to try to converge on the same terminolgy.
Schools have "disability categories." Often there is one big disability category called "autism" that encompasses the entire spectrum. It is one of the magic keys that opens the doors to the special education system. However, once your child walks through that door, their actual experience will depend on their IEP.
Phycisicans make "diagnosis" from the DSM-IV.
My son has a disability category of "autism" and a medical dx of "PDD-NOS"
personally I don't agree this diagnosis is given out too freely. one only has to look at these children to know something environmentally is going on. I believe a combination of vaccines and environmental pollutants. There is only so much abuse and poisoning a developing body can take.[QUOTE=emerald_521]See, this confuses me, because I have heard and from personal experience (it took 3 years for us to get a final dx.) that many doctors are very leary about giving this diagnosis. But at the same time the numbers are rising like wild fire!
I think it depends on the age of the child and the type of dr, the last dev pedi had them diagnosed on the phone before he even saw them, just from talking to me for 15 mintues and looking at the teachers and school ST/OT/psych and social workers reports. He hadn't even seen the boys. The child psych did a similiar thing. I had to get the referral from the regular pedi and when I first started saying something was wrong at 15 months he gave me the lets wait and see line.
foxl,
But remember - they are also requiring a HUGE amount more from all kids. Especially in kindergarten. We were just taught our ABCs - now they need to be almost reading BEFORE they enter kindergarten. And, doing journaling, writing paragraphs, doing addition and subtraction, etc.
When we were young, kids like ours could get by a little easier because less was required at such an early age. A lot of the more high-functioning kids could do fine, I think, if so much wasn't required so early on. Which is why I held ds out a year (SO glad I did!). A lot of our kids have huge developmental growth spurts between ages 5-8 (if I'm remembering correctly from a post I read on here a long time ago) and so if they are given that amount of time academically and don't have so much stress placed on them - they would probably "pass" a little easier.
I'm not in anyway saying that anyone is wrong here - there are lots of varying opinions. Just wanted to add food for thought...
I am talking about EDUCATIONAL Dx, and some of you (emerald and Linda) are talking about Clinical Dx. We have not gotten there yet ...
And yes, Snoopy I agree, No Child Left Behind has meant Lots of Kids Swept into Special Ed.! and, had I but known, I would have held T out for an extra year, too!
It is a complex issue and if I appear to contradict myself within or between threads, it is because I CAN see many sides to it ...
But, the bottom line will always be the bottom line.
Regarding DSM-IV / ICD9 codes, here is some info that may be helpful. The DSM-IV is the guideline used by medical professionals to make diagnosis. The DSM-IV has a code for each diagnosis, and those codes were derived from the ICD-9 codes used by all healthcare systems, a large "healthcare system" being insurance. The two are supposed to match up, and that is the ultimate objective. However, I've read that there are some cases where they don't match up exactly, but I don't have good examples. The coding is supposed to be the same between DSM-IV and ICD-9.
Note that the ICD is an international standard, and covers ALL diseases, and is used worldwide to track morbidity and mortality stats. ICD-9 was published in 1977, and ICD-10 in 1992. ICD-10 was adopted by many countries but not the US, primarilly because medicade and medicare mandate the use of an ICD-9 code, and the cost and effort to overhaul everything required to change to ICD-10 is a big deal. The DSM-IV refers to psychiatric conditions only and is the standard for diagnosis of mental disorders in US and some other countries.
So I guess if you have an ASD child in the US, you get dx'd via DSM and the code matches up exactly to an ICD-9 code, and if you live in other countries you'd likely get dx'd directly from ICD, either 9 or 10 depending on your country.
Some info on DSM-IV that mentions relationship with ICD9:
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The Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States. It is intended to be applicable in a wide array of contexts and used by clinicians and researchers of many different orientations (e.g., biological, psychodynamic, cognitive, behavioral, interpersonal, family/systems). DSM-IV has been designed for use across settings, inpatient, outpatient, partial hospital, consultation-liaison, clinic, private practice, and primary care, and with community populations and by psychiatrists, psychologists, social workers, nurses, occupational and rehabilitation therapists, counselors, and other health and mental health professionals. It is also a necessary tool for collecting and communicating accurate public health statistics. The DSM consists of three major components: the diagnostic classification, the diagnostic criteria sets, and the descriptive text. The diagnostic classification is the list of the mental disorders that are officially part of the DSM system. "Making a DSM diagnosis" consists of selecting those disorders from the classification that best reflect the signs and symptoms that are afflicting the individual being evaluated. Associated with each diagnostic label is a diagnostic code, which is typically used by institutions and agencies for data collection and billing purposes. These diagnostic codes are derived from the coding system used by all health care professionals in the United States, known as the ICD-9-CM. For each disorder included in the DSM, a set of diagnostic criteria that indicate what symptoms must be present (and for how long) in order to qualify for a diagnosis (called inclusion criteria) as well as those symptoms that must not be present (called exclusion criteria) in order for an individual to qualify for a particular diagnosis. Many users of the DSM find these diagnostic criteria particularly useful because they provide a compact encapsulated description of each disorder. Furthermore, use of diagnostic criteria has been shown to increase diagnostic reliability (i.e., likelihood that different users will assign the same diagnosis). However, it is important to remember that these criteria are meant to be used a guidelines to be informed by clinical judgment and are not meant to be used in a cookbook fashion. Finally, the third component of the DSM is the descriptive text that accompanies each disorder. The text of DSM-IV systematically describes each disorder under the following headings: "Diagnostic Features"; "Subtypes and/or Specifiers"; "Recording Procedures"; "Associated Features and Disorders"; "Specific Culture, Age, and Gender Features"; "Prevalence"; "Course"; "Familial Pattern"; and "Differential Diagnosis." DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition), published in 1994 was the last major revision of the DSM. It was the culmination of a six-year effort that involved over 1000 individuals and numerous professional organizations. Much of the effort involved conducting a comprehensive review of the literature to establish a firm empirical basis for making modifications. Numerous changes were made to the classification (i.e., disorders were added, deleted, and reorganized), to the diagnostic criteria sets, and to the descriptive text based on a careful consideration of the available research about the various mental disorders. |
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