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Roger N. Meyer "...of a different mind "
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MISDIAGNOSIS, SERVICES AND ADVOCACY
AN ADULT EXPLAINS ASPERGER SYNDROME
Copyright 1999 Roger N. Meyer



 [The following edited post was sent to a group of parent advocates and attorneys as an introduction to Asperger Syndrome.]

Let me tell a little about me, so my bluster and folderal [comments on the law and special education advocacy] may be easier to understand.

I was a cabinet marker for 26 years, and quit the trade in March 1998 after my last layoff. I was diagnosed with Asperger Syndrome (AS) in the summer of 1997. AS is a variant of autism, sitting at the top end of the autism spectrum. There is another diagnosis for people at this high functioning end of the spectrum called HFA, high functioning autism, but according to a number of diagnostic experts in the field, the main difference between the two may merely be the spelling. [Argumentation about distinctions and terminology used by medical diagnosticians have NOT advanced the cause of children or adults on the spectrum of Autism Spectrum Disorders. Schools often use the confusion arising from medical arguments on the head of a pin to deny services to children diagnosed with either HFA or AS.]

Once I realized how inappropriate my vocation was, and why I had life-long difficulty in it, it wasn't too hard to change to things I've always done well, unpaid. So, here I am a presenter, in-service educator, disability and parent advocate, support group moderator, mediator, technical writer, about to be published author (book and juried journal article), and vocational rehabilitation client. For folks with AS, change is difficult. It has been for me all my life. But this change seems right, and it's happening.

AS was finally medically classified in the DSM-IV in 1994. The vast majority of adults with AS have never been diagnosed, or have been misdiagnosed with everything from schizoid personality, Adult ADD, Obsessive Compulsive Disorder, anxiety, depression, life-long underlying depression (dysthymia), Tourette's Syndrome, Oppositional Defiant Disorder, and Learning Disabled. The reason for all these other (co-morbid) diagnoses is that life stressors bring out behaviors associated with those disorders, but the underlying cause is autism.

Diagnosing children (and adults who have learned to cope a lot) for AS is like having a committee blindfolded and with noseplugs and earplugs describe an elephant. Because each "diagnostician" encounters different manifestations of the disorder, the tendency is to label the person with just that "patch of skin, hair, or tusk" If you think of AS as an umbrella turned upside down, all of manifestations, its "behaviors", can be seen in full force at varying times bobbing to the top and swirling about in that umbrella. It is the constellation, their multiple appearance, the intensity with which these behaviors occur, the perseverance and rumination and strange logic, flashes of creativity and genius, high verbal ability, preference for visual learning, sensory sensitivities, flash temper, stubbornness and resistance to change, low social skills level, avoidance of eye contact, intensity of devotion to a limited number of interests, lack of friends, mates, spouses, isolation, and other manifestations that finally rings the bells for diagnosticians who deal with other pervasive developmental disabilities. The person before them isn't just ONE of the manifestations, but the elephant itself.

School authorities are experts at manipulation, management, and simple answers to complex questions. We love 'em and hate 'em for these reasons, although if WE had our kids thirty or more in a class with no escape, perhaps we too would begin to look like the people with whom we try to solve or children's educational challenges.

ADD is the "diagnosis" of the moment. And, it's got a quick, medical "cure". The schools and not too few doctors love the medication that is used to suppress the manifestations of ADD. What ends up happening, however, is that the person grows up, leaves the school environment, usually goes off the medication, and then runs into trouble in college or the workforce. This is why that rare genuine case of ADD is so puzzling for the individual who has it--and there aren't as many who have "the real thing" as are otherwise carelessly diagnosed with it--and anyone he affects with his behavior.

High functioning autism/AS is the same kind of beasty. Because of all the myths about autism, however, parents are very reluctant to see their child labeled as autistic, even if he is high functioning. But the kid still has it, and that is where the medical and the educational experts clash. Your kid is so bright, he "should" be able to do things he isn't doing. His lack of social skills is a mystery. His difficulties in staying on track, organizing and completing his work, his problems with writing, his apparent problems with listening to and following directions, short term memory difficulties, gross and fine motoric clumsiness, balance difficulties, tantruming, always wanting things "just so", shutdowns, refusal to follow the rules, or, his rigid interpretation, black and white thinking, and inflexibility WITH rules. How about echolalia, or the perseverant repeating of words and nonsense phrases, or sounds; how about rocking, and "stims", behaviors he uses for comfort and assurance? How about aggression and temper tantrums out of nowhere? All of this is a puzzlement. And all of this drives teachers up the wall. Much of this is HFA/AS.

It takes a good multidisciplinary team to determine what is actually going on. Medical diagnosis is insufficient for children because the medical diagnostician just has a snapshot in time, along with parent history of the child, to work with. So, the kid is tested, observed, poked and prodded, and the team concludes not only that the kid is HFA or AS, but also makes specific recommendations for remediation, support, aids, and related services in special education.

For adults, it is best to utilize a process akin to that found useful in the diagnosis of younger persons. There are few psychiatrists, mental health practitioners (regardless of degree) who know anything about HFA/AS in adults. By the time they see such persons, the accommodative behaviors, the protective mask, the wall of silence and truculence has made many of the manifestations of this disorder "disappear", except when the individual is under stress, or in the process of a "breakdown" or "meltdown." A perceptive child developmental psychiatrist or pediatrician may spot this elusive elephant and name it for what it is. That diagnostician may begin seeing more adults, and discovering how in adulthood, the disorder persists, and still affects the person in the full range of human functioning. The global effect of this disorder is responsible for its placement in the category of pervasive developmental disorders. "Developmental" does not mean that the person "grows out of autism," just as a child diagnosed with childhood diabetes doesn't "grow out of" being diabetic.

Why do I come forth with this explanation of an obscure, "invisible disability"? I do it to agree with a special education attorney who supports the parents' duties to become fully informed about their children's disabilities. I do it so that they, along with parent advocates and attorneys, can be effective, active forces in the movement to level the playing field for their children and, by extension, all disabled persons in our society. Parents must do what ever needs to be done to obtain the proper services and recognition of their children's right to a free appropriate public education.

If diagnosed and worked with early enough, individuals with Asperger Syndrome can develop the neurobiological workarounds and compensations that work not only for childhood, but into adulthood. To do that, we train our children to be good self-monitors. We formally teach social rules and appropriate behavior, and practice them with our children. We insist that our children be taught and to learn in ways which are best for them. We do not respect what is administratively convenient but educationally devastating to our children. We protect them from abusive and destructive teachers and administrators, the disciplinarians in the system. Negative discipline does not work with our kids.

We assure that our children get the physical and human aides necessary to make it through critical transitions and beyond. We love the hell out of them, and fully accept them for the persons they are, not for what we wish them to be. We shower good teachers and service providers with recognition, praise, and public thanks.

And, as parents, we vigilantly expect the next bomb, the next event. Please, Dear God, let him get through today. Tomorrow we worry about tonight.

Childhood can't be repeated later on. There are aspects to human development that don't wait for a place on the court calendar, that don't stop because educators say you can't get "there" from "here".

So, as a parent an attorney, or advocate, we constantly weigh the cost, balance unpleasant alternatives, and pray the kid gets the help he needs when he is best open for it, and do anything, really, to assure that this happens. If we can make things better for the children just behind our child, and for those the system has already damaged beyond repair, so much the better. Our children are experiments in the making, and it is our responsibility to assure that all the ethics of human experimentation protect their the integrity, dignity and self-esteem.

Copyright Issues

 

This article is copyright, all rights reserved by the author, Roger N. Meyer.  It may be reproduced in single copy once for personal use, and in no more than ten copies total for educational purposes.  Fair Use is authorized for all purposes and under conditions established by US Statute and the International Copyright Convention, to which the United States is a signatory nation.  No person shall publish, distribute, copy, or by other means make this material available to others for purposes of personal gain or professional self-aggrandizement.  Individuals wishing permission to exercise other than fair use or limited distribution as outlined above must contact the author, in writing, and receive explicit written permission from the author prior to engaging in further use of this material.

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