The Schafer Autism Report

________________________________________________________________ Letter from From Jim Laidler Dear Mr. Schafer, After reading your editorial "Somewhere over the Spectrum: Is Asperger Syndrome Autism?", I felt compelled to comment on some of the points you raised. To begin with, it is a gross overstatement to say that "...the DSM-IV clearly distinguishes between the AS [Asperger's syndrome] diagnosis and that of autism..."  The DSM-IV (and the ICD-9/10) criteria for both diseases are completely subjective and have much overlap. The major distinction between the two, as you later point out, is in language, and even that is subjective - how much "delay" is normal variation and how much is true "language delay"? You later go on to state: "Those with autism have significantly impaired language skills, those with Aspergers do not.  The distinctions are specific and unambiguous. If one can typically speak, write, sign, etc., even if they have a number of other shared characteristics with autism, they are not autistic." and also: "The irony here is that if someone has enough language skills to effectively complain about the treatment of autistics, then they themselves cannot be autistic." It is important to remember that a key feature of autism is language delay - not an absence of language or a permanent impairment of language, although many autistic people have that. Some people who are unimpeachably autistic (e.g. Temple Grandin and Mark Rimland) develop near-normal language in their late teens or adult years. I have heard both Dr. Grandin and Mark Rimland speak, and their language skills far outstrip those of the average NFL player or stock car driver. I am also concerned by your statement: "High functioning autism is not clinically defined and is not in the DSM-IV, and for good reason. High functioning autism is an oxymoron. If one meets the criteria for a diagnosis of autism, by definition one cannot be high-functioning." Many things in the field of mental disorders are not defined by the DSM-IV, and for good reason - they didn't have room (or a consensus). Schizophrenia in remission is not defined, nor are the various levels of mental retardation or, for that matter "high-functioning autism" or "autistic spectrum". This lack of DSM-IV-sanctioned definition has not stopped people from using any of those terms in useful ways. "High-functioning" autism, while not defined, allows the extremely broad (some might say uselessly broad) autism diagnosis to be subdivided into smaller groups. Do you hold the same contempt for that other undefined term, "severely affected" autism? They are both useful in similar ways. "High functioning", in respect to autism, is a relative term - it describes a person who meets the criteria for autism and is less affected than the "average" autistic person - whatever that may be. It also carries the implication that this person is close to, but does not meet, the criteria for Asperger's syndrome - much as PDD means that the person does not meet the criteria for autism, but looks "autistic." I don't believe that anyone using that term is implying that autism is not a disability. I would also like to answer your rhetorical question, "So why would a handful of people, amongst a few others, who apparently are for the most part Aspergers, if anything, want to identify themselves autistic?" Another answer, other than the one you provided, is that autism is a term has a wider public recognition than Asperger's syndrome, and so these people (if they, indeed "only" have Asperger's syndrome) may want the public to know what sort of problems they are dealing with, without the tedium of long explanation. Alternatively, they could actually have been diagnosed as autistic. "Autism" (as defined in the DSM-IV text, rather than just the table of criteria) is a life-long diagnosis. As with schizophrenia and alcoholism, the DSM-IV does not accommodate an autism "cure", only remission or improvement in function. I must reiterate that autism and Asperger's syndrome are diagnoses that are completely subjective - there are no lab tests, X-ray studies, MRI or CT scan findings or anything else that can definitively state "this person is autistic" or "that person has Asperger's syndrome." Asking to "...see their diagnosis..." is pointless. You may as well ask to see someone's diagnosis of depression - and can't you be depressed without a note from your psychiatrist? Despite the separate definitions in the current DSM-IV (which is not, by the way, "revealed truth" - it is just a book, written by fallible men and women), there are many reasons to believe that Asperger's syndrome is just one point (or group of points) along the "autistic spectrum". This is a spectrum that likely reaches from the profoundly disabled to the merely odd and everything in between. I have heard for years from people with autism that they do not want to be seen as a disease that needs to be cured - they are people; different, perhaps from you, but people nonetheless. Some of them would not want to be any different than they are, even if that were possible. I implore you to stop trying to silence the people who say that they are autistic and don't want to be changed. We couldn't change them even if they wanted it. As a father with an autistic son, I understand the pain involved for the parents, but I also see the need to let my child be who he is without me trying to make him different. I spent much of my time in fruitless efforts to "cure" him and am just now reaching the point where I accept him for who he is. I hope that you will come to see that your anger at these "...autism 'imposters'...", as you put it, is misdirected. They are not trying to keep your child from getting well, they just want to be accepted as who they are - as do we all. Sincerely, Jim Laidler Read response from the editor here: http://www.sarnet.org/ltr/lsed-1-08-05.htm