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Roger N. Meyer "...of a different mind "
Puzzle Pieces Image

MISDIAGNOSIS, SERVICES, AND ADVOCACY

 Copyright 1998 Roger Meyer

All Rights Reserved

 

 

[The following is a response to an attorney on a special parent attorney, parents, and advocate listserv.  Her post was one of several dealing with the challenges of discovering a label for troubled, individual  students with special education needs -- a label that finally fits.]

 

 

     Please let me tell you folks a little about me, so my bluster and folderol may be easier to understand.

 

     I was a cabinetmaker for 26 years, and quit the trade this past March after my last layoff. I was diagnosed with Asperger Syndrome (AS) last summer.  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 high functioning autism HFA), but the main difference between the two may merely be the spelling.

 

     Once I realized how inappropriate my vocation was, and why I've had life-long difficulty with it, it wasn't too hard to change to things I've always done well, unpaid, as the foundation of a new career.  So, here I am a presenter, in-service educator, advocate, support group moderator, mediator, technical writer, about to be published author (book and juried journal article), and Vocational Rehabilitation client.  Remember that 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, LD, etc.  The list goes on and on. The reason for all these other (comorbid) diagnoses is that life stressors bring out behaviors associated with those disorders, but the underlying cause, at least in my case, and that of many others, 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"--an expert in his own field--runs across 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 of it, its "behaviors", can be seen in full force at varying times swirling about in that umbrella. It is the constellation, their multiple appearance of many manifestations at once, the intensity with which they 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 skill 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 ring 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.  (For the elephant and upturned umbrella image I thank Pat Harkins, MD, a pediatrician with an AS child.)

 

     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 kids thirty or more in a class with no escape, perhaps we too would begin to look and act like the people with whom we try to solve our children's learning challenges.

 

     So, ADD is the "diagnosis" of the moment.  And, it's got quick, medical "cure".  The schools and not too few doctors love the medication prescribed to suppress the manifestations of ADD.  What ends of happening, however, is that the person grows up, gets away from the school environment, usually goes off the medication, and then runs into trouble in college or the workforce.  This is why that the "rare", genuine case of adult ADD is so puzzling for the individual and anyone he affects with his behavior.  Having been erroneously informed that he is "cured" of ADD or ADHD when he leaves high school, he is shocked to learn that ADD is a life-long condition, something for which he must make accommodations all of his life.  Most people with adult ADD don't know this, especially if they have never been properly diagnosed.

 

     High functioning autism/AS is the same beastie.  Because of all the horrible 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 education folks 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 with 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, wanting always to play by his rules alone, refusal to follow the rules, or, his rigid interpretation, black and white thinking, and inflexibility WITH rules.  He isn't a good winner, and he certainly isn't a good loser.

 

     How about echolalia, or the perseverent repetition of words or nonsense phrases and 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 may be HFA/AS.

 

     It takes a really good multidisciplinary team to determine what is going on.  Medical diagnosis is insufficient for children mainly 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 that the kid is HFA or AS, and makes specific recommendations for remediation, support, aids and related services in special education.

 

     For adults, it is best to consider the same process, to be sure.  There are few psychiatrists, mental health practitioners (regardless of degree) who know anything about HFA/AS in adults.  Adult autism is usually equated with low functioning persons.  By the time diagnostic experts see individuals with HFA/AS, the accommodative behaviors, the protective mask, the wall of silence and truculence has made many of the childhood and adolescent manifestations of this disorder "disappear", except when the individual is under stress, or in the process of a "breakdown" or "meltdown."  Finally, a sharp 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.

 

     Why do I go into this?  Mostly to agree with what has already been said by a number of posters to this list.  You do what has to be done to get your kid the proper services and recognition for this disability while he is still young enough to develop the neurobiological workarounds and compensations that work not only for childhood, but also into adulthood.  HFA/AS is a neurobiological disorder.  That means the seat for its outward manifestations lies in the brain and its wiring.  It also means that identified early enough, many of the miswired connections in the brain can be pruned as with normal brain development, and substitute, more functional connections can be established.  The brain keeps growing into late adolescence, and is capable of being rewired even in adulthood.  Relatively successful recovery from adult, non-geriatric stroke proves that; so does substantial functional recovery from many types of traumatic brain injury (TBI).  The person remains the same; he just has to learn other ways to do the same things as before stroke or TBI impaired those functions.

 

     How do you work with this child?  You train the kid to self-monitor.  You formally teach social rules and practice them with the kid.  You help the kid learn in whatever way is best for him.  You protect him from abusive and destructive teachers and administrators and the disciplinarians in the system.  You smother him with positive reinforcement every step of the way.  You assure that he gets the physical and human aides necessary to make it through critical transitions and beyond.  You shower good teachers and service providers with recognition, praise, and public thanks.  And, as a parent, you vigilantly expect the next bomb, the next event.

 

     Please, Dear God, let him get through today.  Tomorrow we worry about tonight.

 

     You accept him unconditionally, and you love the hell out of him.

 

     Childhood can't be repeated later.  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 an attorneys, advocates, and parents, we constantly weigh the cost, and balance unpleasant alternatives, praying all the while the kid gets the help he needs when he is best open for it, and doing 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.  Each of our children are wondrous experiments in the making, and it is our responsibility to assure that all the ethics of human experimentation protect their 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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