Volume 10 Issue 4

RCOMO  NEWS

November 2003

Parent Power

Parent Power

Parent Power

HEALTH & SCIENCE

NEW DOWN SYNDROME TEST!!!

Thursday Oct. 9, 2003 the New England Journal of Medicine reported a new combination of blood tests and ultrasound can detect fetuses with Down syndrome in the first trimester! The study of over 8000 women correctly identified 85% of the diagnosis at about 12 weeks. Previous procedures discovered the condition at around 20 to 22 weeks. Lead researcher was Dr. Ronald Wapner, chairman of obstetrics and gynecology at Drexel University College of Medicine in Philadelphia.

Dr. Mark Evans, director of the Institute for Genetics and Fetal Medicine at St.Lukes/Roosevelt Hospital Center in New York, said the study will cause a gradual shift from second-trimester screening to this method.

Down Syndrome occurs in about 1 in 800 newborns. Mothers 35 years or older have a higher risk of having a Down syndrome baby; one chance in 270 the report concluded.


LEAVE NO ONE BEHIND

There is a natural tendency to make hasty and sometimes drastic decisions when money is tight. It happens in our personal as well as professional lives. It happens in government as well.

Currently, Missouri is going through some tough evaluations of its various programs and services due to the shortfall of revenue. Mental Health is no exception. For the past two years Mental Health has cut expenses with marginal impact on individual services. However, additional cuts will begin to impact those services. It’s imperative that future cuts be carefully analyzed to recognize diagnosis and appropriateness of programs.

There is currently an interim House Committee studying Habilitation Centers. Habilitation Centers have always and continue to be integral parts of the continuum of residential placements for people with mental retardation.

We should not be in the business of eliminating proven programs and destroying the social fabric and support networks of local families and friends!

Mental Retardation is not Mental Illness. Most people with mental illness, when properly medicated, can live in the community. Most people with mental retardation [they operate at about a 3rd grade level] cannot! They are many times used and abused in the community. People who currently reside in Habilitation Centers are especially vulnerable because they generally possess a more profound and severe diagnosis. They are the most vulnerable! Habilitation Centers not only provide appropriate treatment, but also the health & safety necessary for their maximum quality of life.

As we review programs, we must not leave these people behind. They must continue to be cared for in a humane way. It’s the state’s responsibility.

 


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The Welk Resort in Branson was a pleasant setting for our annual meeting. Great weather, great programs and great entertainment highlighted the weekend attended by over 100 parents, family and friends!

The weekend got off to a rousing start Friday evening with everyone attending the Lawrence Welk Show starring our friends and collaborators, The Lennon Sisters and JoAnn Castle!

Saturday’s meetings provoked many lively discussions on diverse subjects including less state funds; taxes; transportation and the connections between mental retardation and autism. We thank Dr. Don Phares of UMSL; Dr. Barbara Whitman of St. Louis University; Jeff Grosvenor of DMH; Ron Sampson of Joplin Workshops, Inc; and Bert Sterbenz of Greater St. Louis Parents Advocacy Group, Inc. for their outstanding and thought provoking presentations.

Rep Dennis Wood gave a “good-ole” southwest Missouri welcome at our Awards Banquet Saturday night. Rep.Jerry Bough emceed the banquet where we honored Dorn Schuffman, Director of the Department of Mental Health, and Bert Sterbenz, President of the Greater St. Louis Parents Advocacy Group for Mentally Retarded Citizens,Inc. for their outstanding efforts in behalf of people with mental retardation. Other guests included Rep. Bough’s wife, Sharon and Rep. Roy Holand and his wife, Gail.

Jerry Ford, Executive Director, was presented an award from the Greater St. Louis Parents Advocacy Group for Mentally Retarded Citizens Inc. for his dedicated work and accomplishments in their behalf. We were entertained afterward by the “Homestead Pickers” of Silver Dollar City.

Late Sunday morning, after the annual board of directors meeting, we left the beautiful area of southwest Missouri and the warm hospitality of it’s people reinvigorated to fight another year for our sons and daughters with mental retardation.


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THE AUTISM-MENTAL RETARDATION CONNECTION
By Barbara Whitman, PhD

Approximately 70-75% of persons with autism (and autistic Spectrum disorders) also have cognitive deficits in the form of Mental Retardation.  Mental Retardation has long been  part of the mainstream of human experience  and more recently, part of the medical mainstream. Early English law codified the  differences between diseases of the “mind” and diseases of “brain function”. Distinctions were made between “natural fools” (persons suffering from permanent idiocy) and “lunatics” (persons suffering from [possibly] transient psychiatric disorders).The law was concerned with the property rights of the person with a disability  rather than the person him/herself.  Lunatics could inherit, natural fools couldn’t.  See for instance the legal distinction  described by the philosopher John Locke (1632-1704):

 “ Herein seems to lie the difference between idiots  and madmen, that madmen put wrong ideas together and so make wrong propositions  but argue and reason right from them, but   idiots make very few or no propositions, and   reason scarce at all.”

Medically, the underlying abnormalities of cognitive  processing causing mental retardation (however defined) have long  been accepted as an accidental birth defect  of abnormal brain development and  functioning.

By contrast Autism is a relatively newly defined disorder, first described by Kanner in 1943 as a disorder of social withdrawal. Following Kanner’s original description, subsequent work by Bruno Bettelheim asserted that Autism was a childhood psychiatric  disorder resulting from child toxic interactions with a “refrigerator mother” from  whom the impacted child ultimately withdrew into a world of  his/her own. Indeed, for a long time, autism was called “childhood schizophrenia”. This view of etiology prevailed  until  irrefutable evidence of  central nervous system dysfunction was presented by Rimland (1967).

Did autism appear “out of the blue” in 1943? No, in fact most people with autism were previously diagnosed as mentally retarded. And, until the more definitive, and more inclusive diagnostic criteria for autism in DSM-IV in 1996, many youngsters with Autism and Autistic Spectrum Disorders continued to receive a primary diagnosis of mental retardation.

As most readers know, the diagnosis of mental retardation is made when the dual criteria of  deficits in (1) cognitive functioning and (2) in two or more areas of adaptive behavior are met. Most children with autism, particularly those under the age of 6 years, will appear to meet both of those criteria. Until the recent intense study of autism, identifying autism and differentiating the disorder from other developmental problems (particularly severe to profound mental retardation) in children under 6 years of age has presented a significant diagnostic challenge for early childhood professionals. Preschool children with significant cognitive impairment, whether or not they have Autism, may have little or no language.  Some of the distinguishing atypical language features that we have recently learned to associate with autism (echolalia, pronoun reversal) are not applicable to the child with no language. Further, both children with a primary diagnosis of mental retardation and those with Autism may show delayed or abnormal motor development. Further, until a few years ago, diagnostic criteria for autism required the presence of one or more “splinter skills”, a criteria we now know to apply to only a very small percentage of those with autism. Thus, in the absence of splinter skills, many children with autism were mis-classified as “simply” mentally retarded. Finally, those with severe to profound mental retardation frequently demonstrate “autistic features”, particularly restricted, repetitive and stereotyped movements and self-stimulation or injury. Thus, even with today’s ability to better discriminate “autistic symptoms” from those associated with mental retardation, if the cognitive abilities of young children are not specified, clinicians may be mis-classified in both directions.

Current criteria for Autism and ASD describe four categories of impairments that are incorporated into standardized diagnostic criteria:

          1) Absence, delay, or impairments in both verbal and non-verbal language
         
2) Qualitative impairments in reciprocal  social interaction
         
3) A restricted range of interests and stereotyped patterns of behaviors and 
             
activities
         
4) A range of cognitive deficits, however 70- 75%  have cognitive deficits
that
             measure as  mentally retarded

 So if 70-75% of the children with Autism are mentally retarded anyway, what’s the big deal what they are called?  To understand that, we need to look more closely at the differences in “brain functioning”  between the two diagnostic categories.  When we think of those with mental retardation, we generally think of those that are “globally slow”. For the most part we assume that their rate of development is similar across developmental areas (e.g. language, motor, cognition), but when compared with age matched peers, it is a slower overall rate.

 However, those with autism have not only a slower rate of  overall development, those areas of the brain involved with perceiving, understanding, and producing both verbal and non-verbal language appear to have, to use an analogy,  a “short”  in them. A critical long term outcome variable however, is that often this  short can be worked around, rendering a much more functional outcome, if the diagnosis is made and intervention started  before the age of three. For those children with Autism and ASD with normal cognitive potential, such intervention may make the difference between a normalized life and one that is far more restricted. However, such intervention is even more critical when cognitive abilities may be mildly impaired. Thus, for many children with autism, cognitive functioning in the mental retardation range, takes a back seat to the intervention needs in the areas of  language, communication, and social interaction. Even as adolescents and young adults, these areas remain sufficiently problematic, that intervention remains focussed on these issues while the cognitive issues remain in the background. What often gets lost in this equation, is that even the most intense intervention will not “cure” or “make normal” the child with autism whose cognitive abilities are in the range of mild mental retardation; it will [simply] allow them the potential to better function in that range, a potential they may not realized without intervention.

 Recent rulings by the Department of Labor restrict adult vocational services, particularly sheltered and supported services, to those who have documented mental retardation prior to the age of 18. Thus, while a diagnosis of Autism and ASD in the earlier years may provide entrée’ to more intense intervention services, maintaining that diagnosis without attention to the cognitive handicaps may preclude critical services in the adult years. 

 It is time for the many parent support groups to come together to insure that all persons with impaired cognitive abilities have access to services throughout the life-span. Does it matter if these impairments are labeled mental retardation, Autism, Prader-Willi syndrome, Angelman Syndrome, Fragile-X or any of a myriad of other labels? Perhaps it is the person’s needs that should prevail, not the label.

 

 

 

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