Search results for: “l”

  • Autism Diagnosis what you need to know

    Legal Autism Resources
    What are your legal rights for your autistic child? Fortunately there are laws to protect you at school and at your employer. There are also advocacy organizations to find the legal help you need.

    School and College Assistance
    Find out what special education programs are available for autistic children and how you can contact them.

    Financial Planning for adults and children of Autism
    Having a child with special needs requires additional financial planning, insurance considerations.

    Autism Resources by State
    A comprehensive guide to the support groups, agencies and other resources by state.

    Disability resources
    Resources for Adults with Disabilities by State Guide, Questions and Answers about the Individuals with Disabilities Education Act.

    Autism Tips
    Read tips from parents of autistic children. Find out from other parents how to interact with your childs teacher? Parent tips for working with teachers National toll-free numbers

     

    Visit these other pages for information
    Legal ResourcesFinancial ResourcesDisability Resources

    Autism Resources by State

    Autism Tips

  • Autism Research

    Can Autism be Inheritied?
    Evidence against X-Linkage as a cause of Autism
    Seratonin and Autism
    Autistic Brains
    Improvement In Autistic Behavior Seen As Individuals Age

    Center for Human Genetics Autism Research
    Support Organizations

     

     

    Autism is a chronic, nonprogressive developmental disorder. Individuals with autism have a unique set of symptoms in three areas: socialization (interaction with others), communication, and behavior. Autism is a common disorder, when other diagnoses such as pervasive developmental disorder (PDD), pervasive developmental disorder (not otherwise specified – PDD-NOS), and Asperger’s disorder are included in the spectrum.Autism is a complex genetic disorder thought to be caused by one or more genes, either acting alone or together with other factors. Through the Medical Genetics collaborative research study into the hereditary basis of autism, we hope to find the gene(s) that leads to autism. Finding these gene(s) will provide valuable insight into how the disorder is caused and will hopefully lead to improved diagnostic and treatment modalities.

    Can Autism Be Inherited?

    We are often asked the question, Am I at risk for having a child with autism or having another child with autism? The answer is not simple since autism has many causes. Some individuals may have a genetic form of autism. If possible, the underlying cause for the autistic-like behavior must be identified. Several inherited disorders are associated with autistic-like behavior. Some of these disorders include Fragile X Syndrome, Tuberous Sclerosis Complex (TSC), and Phenylketonuria (PKU). When a diagnosis of autistic disorder is made by a health care provider, it is important to determine whether the behavior is the result of one of these well known genetic disorders. If specific testing indicates one of these disorders is responsible for the behavior, the recurrence risk and perhaps the medical treatment will be altered.In most cases, there is no specific cause for autism in an individual. In these instances, the autism is said to be idiopathic, meaning that the behavior is secondary to an unknown cause. These non-specific answers can be frustrating for parents or family members who would like some explanation.

    In this research study, we include individuals and families with idiopathic autism because these are the individuals most likely to carry the gene or genes that cause autism. By finding the genetic factors that play a role in the development of autism, we will someday be able to provide accurate recurrence risks to individuals and families as well as develop better treatments.

    For families that have one child with idiopathic autism, there is an increased risk of having another child with autism. This recurrence risk is estimated to be about four percent which is greater than that found in families that do not have a child with autism.

    Spiker D., Lotspeich L., Kraemer H.C., Hallmayer J., McMahon W., Petersen P.B., Nicholas P., Pingree C., Wiese-Slater S., Chiotti C. et al. Genetics of autism from 37 multiplex families: American Journal of Medical Genetics 54:1, 27-35, 1994.

    Evidence Against X-linkage as a Major Cause of Autism

    Since it is a known fact that more males have autism than females, researchers believed that autism might be associated with a non-working gene on the X chromosome. Recent data for our group and others have shown that it is unlikely that a gene on the X chromosome causes the majority of cases of autism.

    How do we know this? By studying many different families in which more than one member has autism, or a variant of autism such as Asperger’s syndrome or PDD, we have seen that in a number of families the “gene” is passed through the father to a male child with autism. Since a father transmits an X chromosome only to his daughters and not his sons, the “gene” cannot be on the X chromosome in these families.

    Cuccaro M.L., Wolpert C.M., McClintock D.E., Abramson R., Beaty L.M., Storoschuk S., Zimmerman A., Frye V., Porter N., Cook E., Stevenson R., DeLong G.R., Wright H.H., Pericak-Vance, M.A. Familial aggregation in autism: Evidence against X-linkage as a major genetic etiology. American Society of Human Genetics 1996.

    Hallmayer J., Spiker D., Lotspeich L., McMahon W.M., Petersen P.B., Nicholas P., Pingree C., Ciaranello R.D. Male-to male transmission in extended pedigrees with multiple cases of autism. American Journal of Medical Genetics. 67:13-18, 1996.

    Serotonin and Autism: What We Know So Far

    Serotonin is a chemical that functions as a neurotransmitter (chemical communicator) in our brains. (Specifically, serotonin is concentrated in a part of the brain stem called the raphe nucleus). Serotonin is also present in certain blood cells called platelets. It is thought to be involved in inducing sleep, sensory perception, temperature regulation, and control of mood. Serotonin is of interest to autism researchers because some individuals with autism have consistently been found to have high levels of serotonin in their blood stream platelets. However, it is unclear what a high serotonin level signifies.Dr. Cuccaro and his colleagues at W.S. Hall Psychiatric Institute/USC School of Medicine in Columbia, South Carolina may have discovered an important clue. They conducted a study that looked at the level of blood (platelet) serotonin and the verbal ability of individuals with autism and their immediate relatives. Using a well accepted IQ test (Wechsler scales), these researchers found that individuals with high serotonin platelet or blood levels, had lower verbal ability scores. However, other measurements of intellectual abilities were not changed, including visual-spatial ability or memory. Intelligence is a combination of many different abilities including verbal, visual-spatial ability, memory and other areas.

    What does this mean for individuals with autism and their immediate relatives? First, it provides one more biological clue about autism. While not all individuals with autism have high blood serotonin levels, many individuals do. Perhaps individuals with autism and high serotonin levels have one type of autism or perhaps high blood serotonin levels influence the signs and symptoms associated with autism. More research is needed before the relationship between serotonin levels and autism is understood.

    Currently, a high or low blood serotonin level does not alter in any way how individuals with autism are managed medically. Occasionally, medications called serotonin reuptake inhibitors (e.g. Fluoxetine, Sertraline and Paroxetine) are prescribed for some individuals with autism. (This type of medication is also widely used to treat depression). Serotonin reuptake inhibitors keep serotonin in the brain longer so that its function as a chemical communicator is further enhanced. Studies in different populations of autistic individuals will help establish which individuals with autism will benefit from serotonin reuptake inhibitors or other drugs that influence blood and brain serotonin levels.

    Cuccaro, M.L., Wright, H.H., Abramson, R.K., Marstellar, F.A., Valentine, J. Whole-blood serotonin and cognitive functioning in autistic individuals and their first-degree relatives. The Journal of Neuropsychiatry and Clinical Neurosciences. 1993; 5: 94-101.

    Total Brain Volume Can Be Greater In Individuals with Autism

    Thirty eight high-quality magnetic resonance image (MRI) scans of individuals with autism who were more than 12 years old were obtained. In addition, 38 MRIs of individuals over 12 years of age who did not have autism were also obtained. These MRIs were used as controls. Through careful measurement of the volume of the brain, Piven et al. reported that in almost half of the individuals with autism, the total brain volume was greater than in individuals without autism.These results confirm earlier MRI findings reported by the same group. These results suggest a problem in brain development (as opposed to a later injury). Unpublished data suggest that the enlargement may occur in particular regions of the brain and is not a generalized phenomenon. These results should provide important clues about the neurobiology of autism. For example, a new group of genes that are responsible for brain growth have recently been discovered. Abnormalities in these genes may underlie our findings of regional brain enlargement in autism. Also, since brain enlargement occurred in almost half (46%) of the subjects studied, brain size and shape may aid us in eventually identifying subgroups of autistic individuals with different causes for their autism. Dr. Piven and his associates are continuing to study imaging data and will be trying to obtain further funding to follow-up these results over the next year.

    Piven J., Arndt S., Bailey J., Havercamp S., Andreasen N.C., Palmer P. An MRI study of brain size in autism. American Journal of Psychiatry: 12: 1145-1149, 1995.

    Improvement In Autistic Behavior Seen As Individuals Age

    At the April 1995 Society for Research in Child Development Meeting, Dr. Piven and his research group presented the results of their behavioral studies. They reviewed data on the current autistic behaviors in 38 high-functioning adolescent and adult autistic individuals and compared it to their behaviors at age 5 years. These researchers found that there was clear improvement in all three domains of behavior that define autism.However, the most substantial change occurred in the social and communication behaviors. Eighty percent of the males and one hundred percent of the females improved their social and communication skills. Both males and females had fifty percent improvement in ritualistic-repetitive behaviors. Dr. Piven and his colleagues are continuing their study of the course of behavioral change in autism.

    Piven J., Harper J., Palmer P., and Arndt S. Course of behavioral change in autism: a retrospective study of high-IQ adolescents and adults. Journal of the American Academy of Child Adolescent Psychiatry 35:4, 523-29, 1996.


    Center for Human Genetics Autism Research

    To help us reach the goal of discovering the genetic, or inherited causes of autism, we collaborate with other researchers and medical centers. Our growing team now includes other experts in the fields of autism and genetic research. Our collaborators include Robert DeLong, MD of Duke University Medical Center, Dr.’s Ruth Abrahmson, Mike Curcarro and Harry Wright of the W.S. Hall Psychiatric Institute (Columbia, SC), Joseph Piven, MD at the University of Iowa (Iowa City, IA), Susan Folstein, MD at Tufts University (Boston, MA), Nina Sajaniemi, PhD at Helsinki University Central Hospitial (Helsinki, Finland), and their research groups.In order to find the genes for autism, we compare the genetic material (DNA) of individuals with autism to their family members without autism. We also compare genetic material between the families that have members with autism. The genetic material is obtained through blood samples. Once a family decides to join our study, we request all participating family members to give a blood sample. We also review family and medical history and conduct the Autism Diagnostic Interview (ADI) in order to confirm the diagnosis of the family member(s) with autism. However, families will not have to travel to Duke University Medical Center in order to participate. Instead, we try to visit the families personally to collect blood samples and diagnostic information. Family physicians may also collect the blood samples and mail the samples to us. The family history interview and ADI may be done as a telephone interview at any time convenient for the family. All information shared with the Center for Human Genetics is considered medical information and thus kept confidential. Since this is an ongoing research study to identify the genes associated with autism, there are no individual test results that we can report to participating families. However, we update the families participating in our study each year through our newsletter which explains our current findings and research progress.

    This has been a productive year for the autism genetic research study. Over the past year we have had the privilege of working with more than 125 families. Sixty of these families have more than one family member with autism. We have enjoyed meeting these families and we look forward to working with them over the next few years.


    Support Organizations

    Autism Society of America (ASA)
    7910 Woodmont Avenue, Suite 650
    Bethesda, MD 20814
                (800) 3-AUTISM      
    National Alliance for Autism Research (NAAR)
    66 Witherspoon Street
    Suite 310
    Princeton, NJ 08542
                (888) 777-NAAR       (6227)
    naar@naar.org

    Center for Human Genetics Contact

    autism_mail@chg.mc.duke.edu


    Autism References

    Unavailable at this time.


    Autism Newsletter

    Available through the mail. Please call             (800) 283-4316


     
     

     

    Visit these sites for more information
    Early Origins of AutismAsk an Expert on AutismHealth FinderTalk to Autism ExpertNational Institutes of Mental HealthCombined Health Information DatabaseAbstracts on Autism

  • Autism Resources by State

    This is comprehensive guide to local state agencies that can help you with autism. In addition there is help

    Resources by State

    Public Agencies

    State Education Department

    State Developmental Disabilities Council

    University Affiliated Programs (UAPs)

    Protection and Advocacy Agency and Client Assistance Program

    Resources for finding Employment

    Other Resources for Autism

    Autism Resources by State
    Alabama
    Alaska
    Arizona
    Arkansas
    California
    Colorado
    Connecticut
    Delaware
    Florida
    Georgia
    Hawaii
    Idaho
    Illinois
    Indiana
    Iowa
    Kansas
    Kentucky
    Louisiana
    Maine
    Maryland
    Massachusetts
    Michigan
    Minnesota
    Mississippi
    Missouri
    Montana
    Nebraska
    Nevada
    New Hampshire
    New Jersey
    New Mexico
    New York
    North Carolina
    North Dakota
    Ohio
    Oklahoma
    Oregon
    Pennsylvania
    Rhode Island
    South Carolina
    South Dakota
    Tennessee
    Texas
    Utah
    Vermont
    Virginia
    Washington
    West Virginia
    Wisconsin
    Wyoming
    Washington DC

    Public Agencies 


    One of the best resources for finding help for your child with a disability is your local school district  (sometimes called Local Education Agency).  If  your child has already begun school and you think your child needs special services, we suggest that you begin by discussing your concerns with your child’s teacher or school principal. If your child is an infant, we suggest that you refer to your  State Resource Guide and contact the office listed for Programs for Children with Disabilities: Ages birth through 2 years, or  programs for ages 3 through 5 years. Ask for the Child Find Coordinator in your community.

     State Education Department 


    The State Department staff can answer questions about special education and related services in your state. Many states have special manuals explaining the steps to take. Check to see if one is available. State Department officials are responsible for special education and related services programs in their state for preschool, elementary, and secondary age children. Each state sets eligibility ages for services to children and youth with disabilities. For current information concerning this, please contact the office listed under STATE DEPARTMENT OF EDUCATION: SPECIAL EDUCATION.

     State Developmental Disabilities Council 


    Assisted by the U.S. Department of Health and Human Services Administration on Developmental Disabilities, state councils plan and advocate for improvement in services for people with developmental disabilities.

     University Affiliated Programs (UAPs) 


    A national network of programs affiliated with universities and teaching hospitals, UAPs provide interdisciplinary training for professionals and paraprofessionals and offer programs and services for children with disabilities and their families. Individual UAPs have staff with expertise in a variety of areas and can provide information, technical assistance, and in service training to agencies, service providers, parent groups, and others. You can obtain information about University Affiliated Programs, as well as a listing of all UAPs, by contacting: 

    American Association of University Affiliated Programs for 
    Persons with Developmental Disabilities (AAUAP) 
    8630 Fenton Street 
    Suite 410 
    Silver Spring, MD 20910 
    (301) 588-8252       27.73 

    Protection and Advocacy Agency and Client Assistance Program 


    Protection and Advocacy systems are responsible for pursuing legal, administrative, and other remedies to protect the rights of people who have developmentally disabilities or mental illness, regardless of their age. Protection and Advocacy agencies may provide information about health, residential, and social services in your area. Legal assistance is also available. The Client Assistance Program provides assistance to individuals seeking and receiving vocational rehabilitation services. These services, provided under the Rehabilitation Act of 1973, include assisting in the pursuit of legal, administrative, and other appropriate remedies to insure the protection of the rights of individuals with developmental disabilities. 


    RESOURCES FOR FINDING EMPLOYMENT 

    Some agencies/ organizations in your state which may be helpful in your search are:  Your state’s Department of Vocational Rehabilitation or “VR Department”  is a public agency which assists individuals with disabilities in obtaining employment. You can find your state Vocational Rehabilitation agency in our state search, or in the government pages of your local phone book. 


    If your child is still in school and you want to investigate vocational education, you may contact your state’s Office of Vocational Education for Students with Disabilities. This office is within the Department of Education and can give you information on current vocational programs. Many universities operate a federally funded program call UAPs or University Affiliated Programs that provide information and services to persons with disabilities and their families. Each program is different. If you can’t find your area UAP in our search , contact 
     American Association of University Affiliated Programs, 
     8630 Fenton Street, Suite 410 Silver Spring, MD 20910-3803 (301) 588-8252 (Voice) 

     Developmental Disability Planning Councils can provide you with details on existing disability related organizations in your state. Available information offered by the DD Council will vary state-to-state. 

    Advocacy  Resources
    Toll Free Resources
    Legal Assistance
    Advocacy for Autism
    Brief Medical News 
    Medical Info and Resources
    Medical Searches
    Education Info
    Publicity 
    Law
    Employment 
    Assistance
    Autism: A First-person Account
  • What is Autism?

    Autism, which affects thought, perception and attention, is a broad spectrum of disorders that ranges from mild to severe. If an infant does not cuddle, make eye contact or respond to affection  and touching, or have abnormal responses to a combination of senses; such as hearing, balance, smell, taste and reaction to pain, parents should be seriously concerned.

    This lack of responsiveness may be accompanied by an inability to communicate appropriately, and by a persistent failure to develop two way social relationships. The language skills may be poor, even nonexistent, sometimes repeating words or phrases in place of normal language or using gestures and pointing instead of words. In addition, the child may show unusual or extreme responses to objects, either avoidance or preoccupation. Another feature of autism is a tendency toward repetitive activities of a restrictive range, like spinning and rhythmic body movements.


     

    Baby’s Communication Milestones
    Keep in mind that  this chart notes average progress.
    The vast majority of children who do not meet these
    milestones still end up with normal language skills.

     

    COMMUNICATION AGE
    Social smile 0-2 months
    Cooing 0-3 months
    Turns toward mother’s or father’s voice 4 months
    Razzing sound 5 months
    Recognizes mama and dada 6-9 months
    Says first word 12 months
    Has vocabulary of  8-10 words 15 months
    Has vocabulary of 15-18 words 18 months
    Speaks in two word phrases; Has vocabulary of 50 words. 20-24 months
    Can answer “who”, “why”, and “where”, questions; 
    Has vocabulary of 500 words.
    3 years
    Can tell a story 4 years

     


    Autism and related disabilities, such as PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified), and Asperger’s Syndrome are difficult to diagnose, especially in young children where speech and reasoning skills are still developing. Parents who suspect autism in their child should ask their pediatrician to refer them to a child psychiatrist, who can accurately diagnose  the autism and the degree of severity, and determine the appropriate educational measures. Autism is a serious, lifelong disability. However, with appropriate intervention, many of the autism behaviors can be positively changed, even to the point that the child or adult may appear, to the untrained person, to no longer have autism, and have a full range of life experiences.

    For more information go to Autism Checklist

    H E L P F U L  B O O K S
     

     

    Growing Up With Language: How Children Learn to Talk
    The New Language of Toys : Teaching Communication Skills…
    Targeting Autism : What We Know, Don’t Know and Can…
    Play and Imagination in Children With Autism
    Teaching Children With Autism :.
    The World of the Autistic Child
    Recognizing and Coping With Sensory Integration Dysfunction
    Asperger’s Syndrome : A Guide for Parents and Professionals
    Books about Autism Spectrum Disorders
    Soon Will Come the Light : A View from Inside the Autism Puzzle

    Autism-PDD Resources Network
     

    Visit these sites for more information
    Early Origins of AutismAsk an Expert on AutismHealth FinderTalk to Autism Expert

    National Institutes of Mental Health

    Combined Health Information Database

    Abstracts on Autism

  • Autism Genetic Research

    Autism is a chronic, nonprogressive developmental disorder. Individuals with autism have a unique set of symptoms in three areas: socialization (interaction with others), communication, and behavior. Autism is a common disorder, when other diagnoses such as pervasive developmental disorder (PDD), pervasive developmental disorder (not otherwise specified – PDD-NOS), and Asperger’s disorder are included in the spectrum.Autism is a complex genetic disorder thought to be caused by one or more genes, either acting alone or together with other factors. Through the Medical Genetics collaborative research study into the hereditary basis of autism, we hope to find the gene(s) that leads to autism. Finding these gene(s) will provide valuable insight into how the disorder is caused and will hopefully lead to improved diagnostic and treatment modalities.

    Can Autism Be Inherited?

    We are often asked the question, Am I at risk for having a child with autism or having another child with autism? The answer is not simple since autism has many causes. Some individuals may have a genetic form of autism. If possible, the underlying cause for the autistic-like behavior must be identified. Several inherited disorders are associated with autistic-like behavior. Some of these disorders include Fragile X Syndrome, Tuberous Sclerosis Complex (TSC), and Phenylketonuria (PKU). When a diagnosis of autistic disorder is made by a health care provider, it is important to determine whether the behavior is the result of one of these well known genetic disorders. If specific testing indicates one of these disorders is responsible for the behavior, the recurrence risk and perhaps the medical treatment will be altered.In most cases, there is no specific cause for autism in an individual. In these instances, the autism is said to be idiopathic, meaning that the behavior is secondary to an unknown cause. These non-specific answers can be frustrating for parents or family members who would like some explanation.

    In this research study, we include individuals and families with idiopathic autism because these are the individuals most likely to carry the gene or genes that cause autism. By finding the genetic factors that play a role in the development of autism, we will someday be able to provide accurate recurrence risks to individuals and families as well as develop better treatments.

    For families that have one child with idiopathic autism, there is an increased risk of having another child with autism. This recurrence risk is estimated to be about four percent which is greater than that found in families that do not have a child with autism.

    Spiker D., Lotspeich L., Kraemer H.C., Hallmayer J., McMahon W., Petersen P.B., Nicholas P., Pingree C., Wiese-Slater S., Chiotti C. et al. Genetics of autism from 37 multiplex families: American Journal of Medical Genetics 54:1, 27-35, 1994.

    Evidence Against X-linkage as a Major Cause of Autism

    Since it is a known fact that more males have autism than females, researchers believed that autism might be associated with a non-working gene on the X chromosome. Recent data for our group and others have shown that it is unlikely that a gene on the X chromosome causes the majority of cases of autism.

    How do we know this? By studying many different families in which more than one member has autism, or a variant of autism such as Asperger’s syndrome or PDD, we have seen that in a number of families the “gene” is passed through the father to a male child with autism. Since a father transmits an X chromosome only to his daughters and not his sons, the “gene” cannot be on the X chromosome in these families.

    Cuccaro M.L., Wolpert C.M., McClintock D.E., Abramson R., Beaty L.M., Storoschuk S., Zimmerman A., Frye V., Porter N., Cook E., Stevenson R., DeLong G.R., Wright H.H., Pericak-Vance, M.A. Familial aggregation in autism: Evidence against X-linkage as a major genetic etiology. American Society of Human Genetics 1996.

    Hallmayer J., Spiker D., Lotspeich L., McMahon W.M., Petersen P.B., Nicholas P., Pingree C., Ciaranello R.D. Male-to male transmission in extended pedigrees with multiple cases of autism. American Journal of Medical Genetics. 67:13-18, 1996.

    Serotonin and Autism: What We Know So Far

    Serotonin is a chemical that functions as a neurotransmitter (chemical communicator) in our brains. (Specifically, serotonin is concentrated in a part of the brain stem called the raphe nucleus). Serotonin is also present in certain blood cells called platelets. It is thought to be involved in inducing sleep, sensory perception, temperature regulation, and control of mood. Serotonin is of interest to autism researchers because some individuals with autism have consistently been found to have high levels of serotonin in their blood stream platelets. However, it is unclear what a high serotonin level signifies.Dr. Cuccaro and his colleagues at W.S. Hall Psychiatric Institute/USC School of Medicine in Columbia, South Carolina may have discovered an important clue. They conducted a study that looked at the level of blood (platelet) serotonin and the verbal ability of individuals with autism and their immediate relatives. Using a well accepted IQ test (Wechsler scales), these researchers found that individuals with high serotonin platelet or blood levels, had lower verbal ability scores. However, other measurements of intellectual abilities were not changed, including visual-spatial ability or memory. Intelligence is a combination of many different abilities including verbal, visual-spatial ability, memory and other areas.

    What does this mean for individuals with autism and their immediate relatives? First, it provides one more biological clue about autism. While not all individuals with autism have high blood serotonin levels, many individuals do. Perhaps individuals with autism and high serotonin levels have one type of autism or perhaps high blood serotonin levels influence the signs and symptoms associated with autism. More research is needed before the relationship between serotonin levels and autism is understood.

    Currently, a high or low blood serotonin level does not alter in any way how individuals with autism are managed medically. Occasionally, medications called serotonin reuptake inhibitors (e.g. Fluoxetine, Sertraline and Paroxetine) are prescribed for some individuals with autism. (This type of medication is also widely used to treat depression). Serotonin reuptake inhibitors keep serotonin in the brain longer so that its function as a chemical communicator is further enhanced. Studies in different populations of autistic individuals will help establish which individuals with autism will benefit from serotonin reuptake inhibitors or other drugs that influence blood and brain serotonin levels.

    Cuccaro, M.L., Wright, H.H., Abramson, R.K., Marstellar, F.A., Valentine, J. Whole-blood serotonin and cognitive functioning in autistic individuals and their first-degree relatives. The Journal of Neuropsychiatry and Clinical Neurosciences. 1993; 5: 94-101.

    Total Brain Volume Can Be Greater In Individuals with Autism

    Thirty eight high-quality magnetic resonance image (MRI) scans of individuals with autism who were more than 12 years old were obtained. In addition, 38 MRIs of individuals over 12 years of age who did not have autism were also obtained. These MRIs were used as controls. Through careful measurement of the volume of the brain, Piven et al. reported that in almost half of the individuals with autism, the total brain volume was greater than in individuals without autism.These results confirm earlier MRI findings reported by the same group. These results suggest a problem in brain development (as opposed to a later injury). Unpublished data suggest that the enlargement may occur in particular regions of the brain and is not a generalized phenomenon. These results should provide important clues about the neurobiology of autism. For example, a new group of genes that are responsible for brain growth have recently been discovered. Abnormalities in these genes may underlie our findings of regional brain enlargement in autism. Also, since brain enlargement occurred in almost half (46%) of the subjects studied, brain size and shape may aid us in eventually identifying subgroups of autistic individuals with different causes for their autism. Dr. Piven and his associates are continuing to study imaging data and will be trying to obtain further funding to follow-up these results over the next year.

    Piven J., Arndt S., Bailey J., Havercamp S., Andreasen N.C., Palmer P. An MRI study of brain size in autism. American Journal of Psychiatry: 12: 1145-1149, 1995.

    Improvement In Autistic Behavior Seen As Individuals Age

    At the April 1995 Society for Research in Child Development Meeting, Dr. Piven and his research group presented the results of their behavioral studies. They reviewed data on the current autistic behaviors in 38 high-functioning adolescent and adult autistic individuals and compared it to their behaviors at age 5 years. These researchers found that there was clear improvement in all three domains of behavior that define autism.However, the most substantial change occurred in the social and communication behaviors. Eighty percent of the males and one hundred percent of the females improved their social and communication skills. Both males and females had fifty percent improvement in ritualistic-repetitive behaviors. Dr. Piven and his colleagues are continuing their study of the course of behavioral change in autism.

    Piven J., Harper J., Palmer P., and Arndt S. Course of behavioral change in autism: a retrospective study of high-IQ adolescents and adults. Journal of the American Academy of Child Adolescent Psychiatry 35:4, 523-29, 1996.


    Center for Human Genetics Autism Research

    To help us reach the goal of discovering the genetic, or inherited causes of autism, we collaborate with other researchers and medical centers. Our growing team now includes other experts in the fields of autism and genetic research. Our collaborators include Robert DeLong, MD of Duke University Medical Center, Dr.’s Ruth Abrahmson, Mike Curcarro and Harry Wright of the W.S. Hall Psychiatric Institute (Columbia, SC), Joseph Piven, MD at the University of Iowa (Iowa City, IA), Susan Folstein, MD at Tufts University (Boston, MA), Nina Sajaniemi, PhD at Helsinki University Central Hospitial (Helsinki, Finland), and their research groups.In order to find the genes for autism, we compare the genetic material (DNA) of individuals with autism to their family members without autism. We also compare genetic material between the families that have members with autism. The genetic material is obtained through blood samples. Once a family decides to join our study, we request all participating family members to give a blood sample. We also review family and medical history and conduct the Autism Diagnostic Interview (ADI) in order to confirm the diagnosis of the family member(s) with autism. However, families will not have to travel to Duke University Medical Center in order to participate. Instead, we try to visit the families personally to collect blood samples and diagnostic information. Family physicians may also collect the blood samples and mail the samples to us. The family history interview and ADI may be done as a telephone interview at any time convenient for the family. All information shared with the Center for Human Genetics is considered medical information and thus kept confidential. Since this is an ongoing research study to identify the genes associated with autism, there are no individual test results that we can report to participating families. However, we update the families participating in our study each year through our newsletter which explains our current findings and research progress.

    This has been a productive year for the autism genetic research study. Over the past year we have had the privilege of working with more than 125 families. Sixty of these families have more than one family member with autism. We have enjoyed meeting these families and we look forward to working with them over the next few years.

    Support Organizations

    Autism Society of America (ASA)
    7910 Woodmont Avenue, Suite 650
    Bethesda, MD 20814
                (800) 3-AUTISM      
    National Alliance for Autism Research (NAAR)
    66 Witherspoon Street
    Suite 310
    Princeton, NJ 08542
                (888) 777-NAAR       (6227)
    naar@naar.org

    Center for Human Genetics Contact

    autism_mail@chg.mc.duke.edu

    Autism Newsletter

    Available through the mail. Please call             (800) 283-4316      

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  • What Causes Autism?

    It is not known what causes autism but researchers have been trying to make headway to isolate which genes may cause it. Gene research is and exciting area of autism research. But this work is not ready to bear fruit just yet but here is what they know so far. What they have discovered is a number of risk factors that are associated with but not the cause of autism.

    1.Genetic History – It has been shown that 30%-50% of autism cases are inherited. You might want to do a little homework and ask relatives did they or other family members experience any autism symptoms. When you visit your doctor be sure have this information available so your doctor can make an accurate autism diagnosis.

    2. Risk factors in pregnancy and delivery are also risk factors. It is suspected that women with first trimester infections and lack of oxygen in delivery are risk factors that contribute to autism but are not causes. Make sure you have any pregnancy abnormalities available when you see your doctor.

    3. Fragile X Syndrome– researchers have attributed 3% of the autism to this disorder.

    4. Gene Mutation – This cause it what researchers are looking for. It seems there are a number of genes that are associated with brain function that may “mutate” to cause autism. It is unclear how these genes mutate. Read more about autism gene research.

     

    Other resources on autism causes and research

  • Picture Exchange Communication System (PECS)

    The Picture Exchange Communication System (PECS) was developed in 1985 by Andrew S. Bondy, Ph.D. & Lori Frost, M.S., CCC/SLP, as a augmentative/ alternative training package that teaches children and adults with autism and other communication deficits to initiate communication. It was first used at the Delaware Autistic Program, PECS and then became well-known for focusing on the initiation component of communication. PECS does not require complex or expensive materials, and is readily used in a variety of settings. It was created with educators, resident care providers and families in mind.

    PECS begins with teaching a student to exchange a picture of a desired item with a “teacher”, who immediately honors the request. The training protocol is based on B.F. Skinner’s book, Verbal Behavior so that functional verbal operants are systematically taught using prompting and reinforcement strategies that will lead to independent communication. Verbal prompts are not used, thus building immediate initiation and avoiding prompt dependency. The system goes on to teach discrimination of symbols and then how to put them all together in simple sentences. In the most advanced Phases, individuals are taught to comment and answer direct questions. Many preschoolers using PECS also begin developing speech.

    The system has also been successful with adolescents and adults who have a wide array of communicative, cognitive and physical difficulties.

    For more information go to http://www.pecs.com/

  • Autism Treatments

    Treatments and Approaches for Autism

    The briefs on treatments and approaches below will give you an idea of what is available.  Before embarking on any therapy or treatment, consult your physician. 


    Select a document:

              Drug Therapy

    Drugs don’t cure autism, but many autistic suffer from multiple problems such

    as depression or seizures, and the drugs can help with those secondary problems.

    The drugs most commonly prescribed are:

    Anti psychotics (Mellaril, Haldol, Thorazine) – used to treat severe aggression,

    self-injurous behavior, agitation or insomnia. 


    Anticonvulsants (Tegretol, Depakote, Dilantin) – used to control seizures. 


    Anti anxiety (Valium, Librium) 


    Anti depression (Lithium, Depakote) – used for bipolar manic depression. 


    Anti depression (Prozac, Anafranil, Paxil, Zoloft, Luvox) – used for regular

    depression or compulsive behaviors. 


    Beta Blockers (Nadolol, Buspirone)-used to decrease aggression or hyperactivity. 


    Opiate Blockers (Naltrexone/Trexan) – control self injurious behaviors. 


    Sedatives (Chloral Hydrate, Noctec, and Benadryl) – for difficulty sleeping 


    Stimulants (Ritalin, Dexedrine)-for hyperactivity and attention or concentration

    problems.Some of them have side effects.


    Vitamin/Mineral Therapy

    Dimethylglycine (DMG), is a food substance and is most often used Vitamin/Mineral

    Therapy. DMG is found, in small amounts, in brown rice and liver. Its chemical make-up

    resembles that of water soluble vitamins, specifically vitamin B15. DMG does not require

    a prescription, and it can be purchased at many health food stores. There are no apparent

    side effects.

    Use 1/2 of a 125 mg tablet at breakfast for a few days. May be necessary to go up to one

    to four tablets a day if the results are positive.

    Reports from parents giving their child DMG indicate improvements in the areas of speech,

    eye contact, social behavior, and attention span.

    Two weeks after starting on the DMG, B6 and magnesium can be added. Studies have

    shown that vitamin B6 may help control hyperactivity, and improve overall behavior.

    Although improvements vary considerably among individuals, other possible improvements

    are: speech improvements, improved sleeping patterns, lessened irritability, increased

    attention span, decrease in self stimulation, and overall improvement in general health.

     Anti yeast therapy

    There are some evidence that candida albicans may cause or exacerbate behavior

    and health problems in autistic individuals. The only physical symptoms are vaginal

    yeast infections and thrush (white patches in mouth).

    An overgrowth of candida albicans causes toxins to be released into the body which

    are known to impair the central nervous system and the immune system. Some of the

    behaviors related to this are, confusion, hyperactivity, short attention span, lethargy,

    irritability, and aggression. Reported health problems can include headaches, intestinal

    problems,(constipation, diarrhea, flatulence), distended stomach, excessive genital

    touching in infants and young children, cravings for carbohydrates, fruits and sweets.

    Unpleasant odor of hair and feet, acetone smell from mouth, and skin rashes.

    Candida overgrowth is often attributed to long term antibiotic treatments. It has been

    reported that some children whose autistic tendencies surfaced at 18- 24 months had

    been continuously treated with antibiotics to control chronic ear infections. The treatment

    doesn’t cure autism, but is helpful for some autistic children.

      CONTACTS:

    American Academy of Environmental Medicine, PO Box 16106, Denver CO 80216

    Great Smokies Diagnostic Laboratory

    Martin Lee & Stephen Barrie, Associates

    18a Regent Park Boulevard

    Asheville, NC 28806

    +(704) 253-0621

    Can provide kit for stool analysis used for determining yeast overgrowth.

    Allergy Induced Autism and Casein free, Gluten free Diet

    In allergy induced Autism, the symptoms usually become apparent during the first three years of life. Some children have autism that appears to have been triggered by intolerance to many foods and/or chemicals, the main offenders being wheat, cow’s milk, corn, sugar and citrus fruits, although each child may be affected by different substances. The children also have many almost unnoticeable physical problems, namely excessive thirst, excessive sweating, especially at night, low blood sugar, diarrhea, bloating, rhinitis, inability to control temperature, red face and/or ears and dark circles under the eyes.

    It has been reported that a high percentage of autistic children had a “mutant” protein in

    their urine that was created by eating gluten (found in wheat, oats, barley and rye grains)

    and/or casein (milk protein) containing food. The mutant protein was the gluten and casein

    protein bound to a morphine like substance. It’s believed that this was what was causing

    the kids to become spacey and addicted to these foods. It won’t cure autism, but may help

    with some secondary problems.

     

    Auditory Training

    Auditory training can be considered a form of sensory integration in which stimulation

    may sensitize or desensitize one or more senses. Theoretically speaking, if one or more

    senses are impaired in an individual, he or she may develop a distorted perception of the

    environment. There has been much research in the past 15 years to indicate that many

    autistic individuals have sensory dysfunction in one or more areas.

    There are two main types of auditory training methods, the Berard approach, lasting 10

    to 12 days, and the Tomatis approach, lasting 6 to 12 months.The Berard training is

    accomplished by a device which randomly selects high and low frequencies from a music

    source and then sends those sounds via headphones to the trainee. Filtering peaks are

    optional for the developmentally disabled population. The music is, in all cases, modulated

    throughout the 10 hours of listening, whether or not peaks are filtered.

    We do not know what percentage of autistic children may be helped by auditory training,

    if any at all, nor how much they may be helped. The treatment is safe, but expensive.

     

    Music Therapy

    Includes singing, movement to music, and playing instruments. Supposed to be a

    good medium for kids with developmental disabilities because it requires no verbal

    interaction, music is by nature structured, facilitates play, can aid in socialization

    and influence behavior.

     

    Doman/ Delacato Method

    Carl Delacatto wrote a book called “The Ultimate Stranger”. He had a few interesting

    points about “sensoryisms”, a terrifying sensations or distortions to senses. The distortions

    can be hypersensitivity (too much stimulas entering the nervous system), hyposensitivity

    (too little stimulus entering the nervous system) or white noise (internal static that disrupts

    input from external stimuli).

    Delacto Method are brain stimulation activities for brain injured children developed by

    Glenn Doman and Carl Delacatto. It involves cross patterning, patterning and sensory

    exercises developed to enhance memory and processing.

    The delacato team evaluate a child and tailor a program to suit his/her needs. Programs

    are working on senses in order to normalize them and are devised for parents to carry

    out at home.They include massage for tactility, auditory and visual work, and tasks for

    smell and taste, mobility and development. All tasks are fitted into 2 to 5 minute slots so

    that the child does not become bored, and are repeated as necessary.

     

    Osteopathy/Craniosacral Therapy

    Doctors who manipulate the bones of the cranium. We do not recommend this

    treatment!

     Holding Therapy

    Holding therapy gained wide-spread attention when Dr Martha Welch, a child psychiatrist

    from New York, began using it as a means of working with children with autism. Her work

    is written in the book, Holding Time.

     During holding therapy the parent attempts to make contact with the child in various ways.

     This may mean simply comforting a distressed child, but often the parent may hold the child

     for periods of time, even if the child is fighting against the embrace. The child sits or lies

     face to face with the parent, who tries to establish eye contact, as well as to share feelings

     verbally throughout the holding  session. The parent remains calm and in control and offers

     comfort when the child stops resisting.

    Many people feel this is a variant of SIT (sensory integration therapy), which helps the child

    adjust  to and overcome sensory overload, and are holding therapy’s advocates. Some high

    functioning autistic people have protested that this treatment is too traumatic.

     

    Sensory Integration Therapy

    A person is trained to deal with sensory sensitivities. The goal is to reduce that anxiety

    through  repeated exposure.

     

    The Squeeze Machine

    Developed by Temple Grandin. Supposed to reduce hyperactivity and tactile

    defensiveness. Gives the autistic control over the amount of pressure exerted.

       

    Lovaas Method

    Lovaas therapy refers to the treatment model developed by Ivar Lovaas, Ph.D., at

    the UCLA Clinic for the Behavioral Treatment of Children, and is mostly behavior

    modification program. Dr. Lovaas has worked with autistic children for over 30

    years, and studies show it helped some kids, but requires one-on-one with a trainer

    for 40 hours a week.

     The Son-Rise Program taught at the Option Institute and Fellowship

     Barry Neil and Samahria Kaufman “cured” their autistic son, Raun, and then proceeded

     to write a book about it “Son-Rise: The Miracle Continues”. They also founded the Option

     Institute and Fellowship in Sheffield, MA. The Institute offers training for families wishing

     to create home based Son-Rise Programs for their children.

     At present, no formal studies or evaluations have validated the effectiveness of the

     Son-Rise Program as a treatment for children with autism (we do not know if Raun

     was ever formally diagnosed as autistic),  and we do not recommend the program.

     

     Picture Exchange Communication System (PECS)

    The Picture Exchange Communication System  (PECS) was developed as augmentative/

    alternative training package that allows nonverbal children and adults with autism and other

    communication deficits to initiate communication. It was created with educators, residential

    care providers and families in mind, and so it is readily used in a variety of settings. Verbal

    prompts are not used, thus building immediate initiation and avoiding prompt dependency.

    The system goes on to teach discrimination of symbols and then puts them all together in

    simple “sentences.”  Children are also taught to comment and answer direct questions.

    The PECS Training Manual, is written by Lori Frost, MS, CCC/SLP and  Dr. Andrew

    Bondy. The manual provides all of the necessary information to implement PECS

    effectively. It guides readers through the six phases of training and provides examples,

    helpful hints, and templates for data and progress reporting.

     

    Higashi (Daily Life Therapy)

    Daily Life Therapy, pioneered by Dr Kiyo Kitahara at the Higashi School in Japan,

    provides an education and emphasizes vigorous physical education and the arts.

    The school is open to students 3-22, who are Autistic, Autistic like, or Pervasive

    Developmental Disorder, and do not serve Multi-Handicapped (physically disabled),

    Severe/Profound Mental Retardation, Emotionally Disturbed, Character Disorder, or

    Uncontrolled Seizure Disorder.

    A method is developed in Japan and imported into the USA. It includes elements

    normally found in the education of autistic children, but places unusual attention to

    physical exercise.

    Upon entering high school, all students participate in community work and ultimately

    employment. Areas of employment opportunities include clerical, custodial, stocking,

    food service and landscaping. All vocational students are paid employees.

    TEACCHTreatment and Education of Autistic and related Communication Handicapped CHildren

    TEACCH is not a teaching or learning system, but a behavioral management system,which, when properly implemented delivers more predictable behavior and greater cooperation from the TEACCH subject, an Autistic child. In general I believe TEACCH is a productive program for low functioning autistic children, helping the child learn self care skills and preparing the child and the family for some degree of lifelong institutional involvement. TEACCH uses structure and modified environment to teach skills, using children affinity for routines and rituals to teach and reinforce, classrooms so structured and routinized that children are happy, but cannot truly learn to adapt to transitions and changes.

    We do not recommend this program for higher functioning children who can be taught to

    eventually lead a relatively normal life. While I believe that Autism/PDD are biological in

    nature, environmental factors play a major role in the child ability to compensate for the

    disorder and to better, more normal functioning. For more information about TEACCH

     go toTEACCH

    Speech-Language Therapy

    It is recognised that autistic children have difficulties with language, but it is clear

    that traditional approaches emphasising mastery of the formal properties of language

    are largely inappropriate: training children to speak is not going to bring about a

    transformation of their behaviour. The autistic child needs to learn not so much how

    to speak as how to use language socially to communicate.

    That includes knowing how to hold a conversation, thinking about what the other

    person in a conversation understands and believes, and tuning in to the meta-linguistic

    signals of the other person, such as facial expression, tone of voice and body language.

    It is important to remember that communication is as much nonverbal as it is verbal,

    and autistic people have great difficulty understanding nonverbal language.

    A speech pathologist who specializes in the diagnosis and treatment of language problems

    and speech disorders can help a person learn how to more effectively communicate.

    Speech therapists working with a nonverbal autistic individuals, may consider alternatives

    to the spoken word such as signing, typing, or a picture board with words.

    Occupational Therapy

    Commonly focuses on improving fine motor skills, or sensory motor skills that include

    balance (vestibular system), awareness of body position (proprioceptive system), and

    touch (tactile system).

    After the therapist identifies a specific problem, therapy may include sensory integration

    activities such as: massage, firm touch, swinging, and bouncing.

     

    Dealing With Bad Behaviors

    If you have an adolescent on the spectrum and you need further help in disciplining then read this article on parenting defiant teens.

     

  • Advocacy Organizations by State

    ALABAMA
    Reuben W. Cook
    Ex. Director
    Alabama Disabilities Advocacy Program
    Adap 526 Martha Parham, West
    P.O. Box 870395
    Tuscaloosa, Alabama 35487-0395

    (205) 348-4928
    TDD             205-348-9484
    800-826-1675
    FAX (205) 348-3909

    ALASKA
    Rick Tessandore
    Executive Director
    Disability Law Center of Alaska
    615 East 82nd Avenue
    Suite 101
    Anchorage, Alaska 99518-3158

    (907) 344-1002       V/TDD
    800-478-1234
    FAX (907) 349-1002
    E-mail – Disablaw@anc.ak.net

    AMERICAN SAMOA
    Minareta Thompson
    Ex. Director
    Office of Protection and Advocacy
    for the Disabled
    American Samoa Government
    Post Office Box 3937
    Pago Pago, American Samoa 96799-0320

    00 for overseas operator
    011(684) 633-2441
    011(684) 613-4163
    FAX (684) 633-7286

    ARIZONA
    Leslie J. Cohen
    Executive Director
    The Arizona Center for Disability Law
    3131 North Country Club
    Suite #100
    Tucson, Arizona 85716

    (520) 327-9547       Voice\TDD
    FAX (520) 323-0642
    1-800-922-1447
    PHOENIX OFFICE –             1-800-927-2260

    ARKANSAS
    Nan Ellen D. East
    Executive Director
    Advocacy Services, Inc.
    1100 North University, Suite 201
    Evergreen Place
    Little Rock, Arkansas 72207

    (501) 296-1775       V/TDD
    1-800-482-1174       V/TDD
    Fax (501) 296-1779
    E-Mail – advocacy@aristotle.net
    E-Mail – hn5322@handsnet.org


    CALIFORNIA 
    Catherine Blakemore
    Executive Director
    Protection & Advocacy, Inc.
    100 Howe Avenue, Suite 185N
    Sacramento, California 95825

    916-488-9955       Admin Off.
    916-488-9950       Legal Off.
    800-776-5746
    (FAX) 916-488-2635
    E-Mail 1232@handsnet.org
    E-Mail cathyb@sacramento.pai-ca.com

    COLORADO 
    Mary Anne Harvey
    Executive Director
    The Legal Center
    455 Sherman Street, Suite 130
    Denver, Colorado 80203-4403 

                (303) 722-0300       Voice\TDD
    FAX 303 722-0720
    E-Mail hn6282@handsnet.org

    CONNECTICUT
    James McGaughey (Jim)
    Executive Director
    Office of Protection and Advocacy for Persons with Disabilities
    60-B Weston Street
    Hartford, Conneticut 06120-1551 

                (860) 297-4300
    800-842-7303       (State-wide)
    (860) 566-2102       (TDD & voice)
    FAX 860-566-8714
    E-Mail hn2571@handsnet.org
    E-Mail hn6587 Ex.Dir@handsnet.org 


    DELAWARE 
    Judith Schuenemeyer (FUNDING)
    Ex. Director
    Community Legal Aid Society, Inc.
    913 Washington Street
    Wilmington, Delware 19801 

                (302) 575-0660
    FAX 302-575-0840

    Brian Hartman (PROGRAM)
    Director
    Disab. Law Program
    913 Washington Street
    Wilmington, Delaware 19801

                (302) 575-0690
    FAX 302-575-0840

    DISTRICT OF COLUMBIA
    Jane Brown, Esq.
    Executive Director
    University Legal Services, Inc. (ULS)
    300 I Street, N.E., Suite 202
    Washington, D.C. 20002

                (202) 547-4747
    FAX 202-547-2083/2662


    FLORIDA 
    Marcia Beach
    Executive Director
    Advocacy Center for Persons with Disabilities, Inc.
    2671 Executive Center, Circle, West
    Webster Building, Suite-100
    Tallahassee, Florida 32301-5092 

                (850) 488-9071
    1-800-342-0823
    FAX 850-488-8640
    TDD             1-800-346-4127      


    GEORGIA 
    Dr. Joyce R. Ringer
    Executive Director
    Georgia Advocacy Office, Inc.
    999 Peachtree Street, N.E.
    Suite 870
    Atlanta, Georgia 30309-3166 

                (404) 885-1234       Voice\TDD
    1-800-537-2329
    FAX (404) 607-8286
    E-Mail hn5298@handsnet.org    > 


    GUAM
    Eduardo R. del Rosario (Eddie)
    Executive Director
    Protection and Advocacy of the Marianas (PAM)
    Reflection Center, Suite 204
    Chalan Santo Papa
    Agana, Guam 96910 

    011-(671) 472-8985/86
    FAX 011-671-472-8989
    E-Mail hn5986@handsnet.org


    HAWAII 
    Gary L. Smith
    Executive Director
    Protection and Advocacy Agency
    1580 Makaloa Street
    Suite 1060
    Honolulu, Hawaii 96814-3237

    (808) 949-2922       Voice/TDD
    FAX (808) 949-2928
    E-Mail hn4981@handsnet.org


    IDAHO 
    James R. Baugh
    Executive Director
    Co-Ad, Inc.
    Idaho’s Comprehensive Advocacy, Inc.
    4477 Emerald Street, Suite B-100
    Boise, Idaho 83706

    (208) 336-5353       Voice/TDD
    Fax (208) 336-5396
    Toll Free             1-800-632-5125
    E-Mail – hn5880@handsnet.org

    ILLINOIS
    Zena Naiditch
    Executive Director
    Illinois Equip for Equality, Inc.
    11 E. Adams, Suite 1200
    Chicago, Illinois 60603

    (312) 341-0022       Voice/TDD
    FAX 312-341-0295
    E-Mail – hn6177@handsnet.org

    INDIANA
    Tom Gallagher
    Executive Director
    Indiana Advocacy Service
    4701 North Keystone Avenue
    Suite 222
    Indianapolis, Indiana 46205

    (317) 722-5555
    800-622-4845
    FAX (317) 722-5564
    E-Mail-ipas@source.isd.state.in.us

    IOWA
    Mervin L. Roth
    Executive Director
    Iowa Protection and Advocacy Service, Inc.
    3015 Merle Hay Road, Suite 6
    Des Moines, Iowa 50310

    (515) 278-2502
    FAX (515) 278-0539
    515-278-0571 TDD
    E-Mail hn5317@handsnet.org


    KANSAS 
    Jim Germer
    Acting Executive Director
    Kansas Advocacy and Protective Services
    501 SouthWest Jackson, Suite 425
    Topeka, Kansas 66603

    (913) 232-3469
    FAX 913-232-4758
    E-Mail JGermer@idir.net

    KENTUCKY
    Maureen Fitzgerald
    Acting Director
    Division for Protection and Advocacy
    Office for Public Advocacy
    100 Fair Oaks Lane, 3rd FL
    Frankfort, Kentucky 40601

    (502) 564-2967
    800-372-2988       TDD
    FAX (502) 564-7890
    E-Mail dfoy@advocate.pa.state.ky.us


    LOUISIANA 
    Lois V. Simpson
    Executive Director
    Advocacy Center for the Elderly and Disabled
    225 Baronne Street
    Suite 2112
    New Orleans, Louisiana 70112-2112

    (504) 522-2337
    1-800-960-7705
    FAX (504) 522-5507


    MAINE 
    Kimberly Moody (Kim)
    Acting Executive Director
    Maine Advocacy Services
    32 Winthrop Street
    P.O. Box 2007
    Augusta, Maine 04338-2007

    (207) 626-2774       ext. 104
    1-800-452-1948
    FAX 207-621-1419

    MARYLAND
    Elizabeth Jones
    Ex. Director
    Maryland Disability Law Center
    The Walbert Building
    1800 North Charles Street
    Suite 204
    Baltimore, Maryland 21201

    (410) 234-2791
    1-800-233-7201
    FAX 410 234-2624
    hn6313@handsnet.org

    MASSACHUSETTS 
    Christine Griffin
    Executive Director
    Disabilities Law Center, Inc. (DLC)
    11 Beacon Street, Suite 925
    Boston, Massachusetts 02108 

                (617) 723-8455       Voice
    (617) 227-9464       TTD
    FAX (617) 723-9125
    1-800-872-9992
    1-800-381-0577       TDD
    E-mail hn5348@handsnet.org 

    MICHIGAN
    Elizabeth W. Bauer
    Executive Director
    Michigan Protection and Advocacy Service
    106 West Allegan, Suite 300
    Lansing, Michigan 48933-1706 

                (517) 487-1755      \Voice/TDD
    1-800-288-5923
    FAX (517) 487-0827
    E-mail hn5293@handsnet.org 

    MINNESOTA
    Jerry Lane
    Executive Director
    Minnesota Disability Law Center
    430 First Avenue, North, Suite 300
    Minneapolis, Minnesota 55401-1780 

                (612) 332-1441
    800-292-4150
    FAX (612) 334-5755
    E-mail hn0518@handsnet.org 

    MISSISSIPPI
    Rebecca Floyd
    Executive Director
    Mississippi Protection and Advocacy System
    for Developmental Disabilities, Inc.
    5330 Executive Place, Suite A
    Jackson, Mississippi 39206-5606 

                (601) 981-8207
    FAX 601-981-8313
    800-772-4057
    E-mail hn5999@handsnet.org

    MISSOURI
    Shawn de Loyola
    Executive Director
    Missouri Protection and Advocacy Services, Inc.
    925 S. Country Club Drive, Unit B-1
    Jefferson City, Missouri 65109 

                (573) 893-3333
    800-392-8667
    FAX 573-893-4231

    MONTANA
    Bernadette Ongoy Frank
    Executive Director
    Montana Advocacy Program, Inc. (MAP)
    Post Office Box 1680
    316 North Park, Room 211
    Helena, Montana 59624 

                (406) 444-3889       Voice\TDD
    800-245-4743       (MT Only)
    FAX 406 444-0261
    E-mail hn6510 Exe.Dir
    E-mail hn6511 Alan Freed, Staff Attorney 


    NATIVE AMERICAN PROTECTION AND
    ADVOCACY PROJECT (NAPAP) 

    Therese Yanan
    Executive Director
    DNA)People’s Legal Services, Inc.
    Post Office Box 392
    Shiprock, New Mexico 87410 

                (505) 368-3216
    1-(800)-862-7271       – Clients Only
    Fax 505 368-3220
    E-mail hn4857@handsnet.org 

    NEBRASKA
    Timothy Shaw
    Executive Director
    Nebraska Advocacy Services, Inc.
    522 Lincoln Center Building
    215 Centennial Mall South
    Lincoln, Nebraska 68508-1813 

                (402) 474-3183       Voice/TDD
    800-422-6691
    FAX 402-474-3274

    NEVADA
    Jack Mayes
    Executive Director
    Nevada Disability Advocacy and Law Center, Inc.(NDALC)
    401 So. Third St. Suite 403             800-992-5715       Toll Free (within Nevada)
    Las Vegas, Nevada 89101 

                (702) 383-8150
    (702) 383-8170/TDD
    FAX 702-383-8170

    NEW HAMPSHIRE
    Donna Woodfin
    Executive Director
    Disabilities Rights Center
    P.O. Box 3660
    18 Low Avenue
    Concord, New Hampshire 03302-3660 

                (603) 228-0432       Voice/TDD
    800-834-1721       (NH Only)
    FAX 603-225-2077
    E-mail hn6217@handsnet.org

    NEW JERSEY
    Sarah Wiggins Mitchell
    Ex. Director
    NJ Protection and Advocacy Inc.
    210 South Broad Street, 3rd Floor
    Trenton, New Jersey 08608 

                (609) 292-9742
    800-792-8600
    FAX 609 777-0187
    E-mail hn5621Exe.Dir
    hn5622Rick Considine 

    NEW MEXICO
    James Jackson
    Executive Director
    P&A System
    1720 Louisiana Blvd., N.E., Suite 204
    Albuquerque, New Mexico 87110 

    (505) 256-3100/Voice\TDD
    800-432-4682
    Fax 505 256-3184
    E-mail hn5412@handsnet.org 

    NEW YORK
    Clarence J. Sundram
    Chairman
    NY Commission on Quality of
    Care for the Mentally Disabled
    99 Washington Avenue, Suite 1002
    Albany, New York 12210 

                (518) 473-4057
    (518) 473-7378
    800-624-4143       (TDD)
    FAX 518 473-6296
    E-mail hn5344@handsnet.org (PAIMI)
    hn5345@handsnet.org (PADD) 

    NORTH CAROLINA 

    Allen Perry
    Exec. Director
    Governor’s Advocacy Council for
    Persons with Disabilities
    2113 Cameron Street, Suite 218
    Raleigh, North Carolina 27605-1344 

    919 733-9250/Voice\TDD
    FAX 919 733-9173
    800-821-6922       

    NORTH DAKOTA
    Teresa Larson
    Executive Director
    Protection and Advocacy Project
    400 E. Broadway, Suite 616
    Bismarck, North Dakota 58501 

                (701)-328-2950
    800-472-2670/Voice\Tool free
    800-642-6694       (24H. Line)
    FAX 701-328-3934
    E-mail Beckatpa@aol.com

    NORTHERN MARIANA ISLANDS
    Lydia Barcinas Santos
    Executive Director
    Northern Mariana P&A System, Inc.
    Post Office Box 3529 C.K.
    Saipan, MP 96950 

    011-(670) 235-7273/4/6
    TTY – 011(670) 235-7278
    FAX – 011-670 235-7275


    OHIO 
    Carolyn Knight
    Executive Director
    Ohio Legal Rights Service
    8 East Long Street, 6th Floor
    Columbus, Ohio 43215-2999 

    (614) 466-7264/Voice\TDD
    800-282-9181
    FAX (614) 644-1888
    E-mail hn7149@handsnet.org 

    OKLAHOMA
    Kayla Bower
    Executive Director
    Oklahoma Disability Law Center, Inc.
    2915 Classen Blvd., Suite 300
    Oklahoma City, OK 73106 

                (405) 525-7755
    800-880-7755
    FAX 405 525-7759

    OREGON
    Robert Joondeph
    Executive Director
    Oregon Advocacy Center
    620 S.W., Fifth Ave., 5th Floor
    Portland, Oregon 97204-1428 

                (503) 243-2081
    800-452-1694
    TDD             800-556-5351
    FAX 503-243-1738
    E-mail hn6919@handsnet.org
    E-mail oradvocacy@aol.com 


    PENNSYLVANIA 
    Kevin T. Casey
    Executive Director
    Pennsylvania Protection and Advocacy, Inc.
    116 Pine Street
    Harrisburg, Pennsylvania 17101-1208 

    (717) 236-8110/Voice\TDD
    800-692-7443
    FAX 717 236-0192
    E-mail hn6067@handsnet.org

    INTERNET – 102126.1251@COMPUSERVE.COM

    PUERTO RICO
    David Cruz Veles
    Executive Director
    Office of the Ombudsman for the Disabled Persons
    Caribbean Office Plaza,
    Ponce de Leon Avenue
    #670 Miramar
    Puerto Rico 00907 P.O Box 4234
    San Juan, Puerto Rico 00902-4234 

    787-729-4299
    (787) 721-4299 Ombudsman
    787-725-2333 mESSAGE/V
    Deputy 787-725-3606
    L 800 981-4125
    FAX 787-721-2455


    REP OF PALAU 
    (Vacant)
    Executive Dir.
    Client Assistance Program
    Bu. of Public Health
    Ministry of Health
    P.O. Box 6027
    Koror, Republic of Palau 96940 

    011-680-488-2813
    FAX 011-680-488-1211

    RHODE ISLAND
    Ray Bandusky
    Ex. Director
    Rhode Island Disability Law Center, Inc.
    349 Eddy Street
    Providence, Rhode Island 02903 

                (401) 831-3150
    401-831-5335/TDD
    1-800-733-5332
    FAX 401-274-5568 


    SOUTH CAROLINA 
    Gloria Prevost
    Executive Director
    Protection and Advocacy for
    People with Disabilities, Inc.
    3710 Landmark Drive, Suite 208
    Columbia, South Carolina 29204-4034 

    (803) 782-0639/Voice\TDD
    800-922-5225
    Fax (803) 790-1946

    SOUTH DAKOTA
    Robert J. Kean
    Executive Director
    South Dakota Advocacy Services
    221 South Central Avenue
    Pierre, South Dakota 57501

    (605) 224-8294/Voice\TDD
    800-658-4782
    FAX 605-224-5125


    TENNESSEE 
    Shirley Shea
    Executive Director
    Tennessee P&A Inc.
    P.O. Box 121257 (Mailing Address)
    2416 21st Ave., South
    Nashville, Tennessee 37212-1257 

    (615) 298-1080/Voice\TDD
    800-342-1660
    FAX 615-298-2046

    TEXAS
    Jim Comstock-Galagan
    Executive Director
    Advocacy, Inc.
    7800 Shoal Creek Blvd., Suite 171-E
    Austin, Texas 78757-1560 

                (512) 454-4816
    800-252-9108
    FAX 512-323-0902
    E-mail hn2414@handsnet.org


    UTAH 
    Ms. Fraiser Nelson
    Executive Director
    Legal Center for People w/Disabilities
    455 East 400 South, Suite 410
    Salt Lake City, Utah 84111 

    (801) 363-1347/Voice\TDD
    800-662-9080
    FAX 801 363-1437
    E-mail hn5856@handsnet.org 


    VERMONT 
    William Sullivan (Bill)
    Executive Director
    Vermont Protection and Advocacy Inc.
    21 East State Street, Suite #101
    Montpellier, Vermont 05602 

                (802) 229-1355
    FAX 802 229-1359

    VIRGINIA 
    Sandra K. Reen (Sandy)
    Ex. Director
    Dept. for the Rights of Virginians
    with Disabilities
    James Monroe Bldg.
    101 N. 14th Street, 17th Floor
    Richmond, Virginia 23219-3641 

    (804) 225-2042/Voice\TDD
    800-552-3962
    FAX 804 225-3221

    VIRGIN ISLANDS
    Ameila Headley Lamont, Esq.
    Ex. Director
    Virgin Islands Advocacy Agency
    7A Whim Street, Suite 2
    Frederiksted, Virgin Islands 00840 

    (809) 772-1200, 4641/TDD
    809-776-4303
    FAX 809 772-0609
    E-mail hn5454@handsnet.org 


    WASHINGTON 
    Mark Stroh
    Executive Director
    Washington Protection and Advocacy System (WPAS)
    1401 E. Jefferson Street
    Suite 506
    Seattle, Washington 98122

                (206) 324-1521
    FAX 206-324-1783
    E-mail wpas@halcyon.com

    WEST VIRGINIA
    Linda A. Leasure
    Executive Director
    WV Advocates, Inc.
    Litton Bldg., 4th Fl.
    1207 Quarrier Street
    Charleston, West Virginia 25301-1842 

    (304) 346-0847/Voice\TDD
    800-950-5250
    FAX 304-346-0867
    E-mail wvadvocates@newwave.net

    WISCONSIN
    Lynn Breedlove,
    Executive Director
    Wisconsin Coalition for Advocacy, Inc.
    16 N. Carroll Street FAX
    Suite 400
    Madison, Wisconsin 53703 

                (608) 267-0214
    800-928-8778
    (608) 267-0368
    E-mail yochupa@wp.dhss.state.wi.us

    WYOMING
    Jeanne A. Thobro
    Executive Director
    P&A System, Inc.
    2424 Pioneer Avenue, #101
    Cheyenne, Wyoming 82001-3075 

                (307) 638-7668
    307-632-3496
    800-821-3091       Voice/TDD
    800-624-7648
    FAX (307) 638-0815
    E-mail hn4927@handsnet.org National Organization 

    Mr. Curtis Decker
    National Association of Protection and Advocacy Systems
    900 2nd Street, N.E., Suite 211
    Washington, D.C. 20002
    (202) 408-9514
    FAX – 408-9520

    Carole Schauer
    Contact Person
    Program Officer
    Protection and Advocacy Program
    Center for Mental Health Services(CMHS)
    Room 15C-26
    5600 Fishers Lane
    Rockville, Maryland 20857
    (301) 443-3667
    FAX (301) 594-0091

    Bernard Arons
    Director, CMHS
    Room 15-105
    5600 Fishers Lane
    Rockville, Maryland 20857
    (301) 443-0001
    FAX (301) 443-1563 

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