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Library and Research


Research: Disability Specific Resources: Asperger Syndrome



New Horizons Un-limited is not endorsing and assumes no responsibility in guaranteeing the products, services, programs or conditions as described. If you are interested in a resource listed below, call or contact the resource to verify the current situation. Evaluate the information, analyze your unique circumstances, use your best judgment and make your own decisions when using the information. Before making any change, consult your health care professional.

National

New Sign Autism Speaks is a national autism research foundation. This foundation is dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. They are committed to raising the funds necessary to support these goals. Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to their concerns and take action to address this urgent global health crisis.

New Sign Columbia University Programs in Occupational Therapy Graduate Occupational Therapy students under the supervision of Emily Raphael, M.S., M.A., OTR/L, are conducting research into the needs of siblings of children diagnosed with Asperger syndrome (AS) in the research, "Asperger Syndrome Siblings: A Survey of Parents' Perceptions of their Understanding of the Illness, Sibling Relationships and Need for Support Services" - Online Survey. This online survey asks questions relating to siblings' adjustment and support, and their relationship with their brother or sister who has been diagnosed with Asperger Syndrome. They believe that an appreciation of siblings' experiences will lead to more effective and greater support for these children and their families. They are interested in hearing from primary care givers who have at least one child with AS, who has at least one sibling, both over the age of 6. The survey should take approximately 20 minutes. Responses will be completely confidential and anonymous, and no personal identifying information is required to participate. To participate in the survey, please go to the link above. If you have any questions about this research, please do not hesitate to contact them at (212) 342-2743 or e-mail them at eir12@columbia.edu.

New Sign (C.A.N.) Cure Autism Now is a national autism research foundation, an organization of parents, clinicians and leading scientists committed to accelerating the pace of biomedical research in autism through raising money for research projects, education and outreach. Founded by parents of children with autism in 1995, the organization has grown from a kitchen-table effort to the largest provider of support for autism research and resources in the country. The organization's primary focus is to fund essential research through a variety of programs designed to encourage innovative approaches toward identifying the causes, prevention, treatment and a cure for autism and related disorders. This website includes FAQ on autism, resources on autism and information to participate in research.

New Sign Hofstra University, Hempstead, New York Clinical/School Psychology Ph.D. Program is asking "Parents of Children with Diagnosed Autism, Aspergerís Disorder, or Pervasive Developmental Disorder (PDD)" to contact Dawn Middleton, M.A., Doctoral Candidate and Liora Pedhazur-Schmelkin, Ph.D., Vice Provost for Academic Affairs, who are currently examining parental experience and opinions of educational placements for children with autism spectrum disorders. They are asking that parents or guardians of children diagnosed with an autism spectrum disorder (Autism, Asperger's Disorder, or Pervasive Developmental Disorder (PDD) participate in this study by completing an online questionnaire. If you choose to participate, you will be asked to complete the questionnaire, which will take approximately 20 minutes. No further participation is necessary. You will not be asked to supply any personal identifying information. All results will be reported in terms of group responses and no individual responses will be reported. You may access the questionnaire by clicking on the above link. If you have any questions about this research, please do not hesitate to contact Dawn Middleton at dawnmiddleton@yahoo.com

New Sign Massachusetts General Hospital, Charlestown, Massachusetts, High-Functioning Autism/Asperger Syndrome Study: Neurobiology and Genetics of Autism and Related Disorders. The goals of this research are to better define the boundaries and clarify the distinctions between High Functioning Autism and Asperger Syndrome, as well as to identify familial patterns of inheritance in these two disorders. This study is a collaborative effort and includes the site at McLean Hospital as well as sites at the Yale Child Study Center, New Haven, CT, the University of Chicago, Chicago, IL and the University of Michigan, Ann Arbor, Michigan. This investigation is supported through the NICHD and was just awarded funds for another 5 years of study. They are currently enrolling families with at least one child between the ages of 6 and 21 with a diagnosis of High Functioning Autism or Asperger Syndrome (IQ >70), and no other significant disorders. For more information on how you can participate, go to this website.

New Sign Yale Child Study Center- LDA, New Haven, Connecticut is currently involved in a long term study of Asperger Syndrome with the Child Study Center at Yale University. Contact them to request copies of the Asperger Syndrome booklets. In addition, they offer for sale disability related books. Contact them via mail at: 4156 Library Avenue, Pittsburg, PA l5234, or by phone, 412-341-1515. The Project is looking for study subjects with PDDs between the ages of 8 and 24, including children with Asperger Syndrome. Contact person: Sanno Zack at (203) 785-3488 or e-mail Sanno.Zack@yale.edu.


State Listings


Texas

New Sign Texas Woman's University, of Dallas/Ft. Worth, Texas is involved with the following research, "Children Diagnosed with Asperger's Syndrome or High Functioning Autism and their Families Best Practices for Psychological Assessment of Children and Adolescents with PDD's, Parenting Role, and Marital Relationship Impact." The research team is led by Kathy Deornellas, Ph.D., and Melinda Lang, Ph.D., of Texas Woman's University. The purpose of this research is to add to the body of knowledge concerning the best practices for psychological assessment of children and adolescents who have been diagnosed with pervasive developmental disorders (PDDs), specifically High Functioning Autism and Asperger Syndrome. The research will also examine the impact of having a child with PDD on their parents' satisfaction with the parenting role and the marital relationship. The team hopes to find specific patterns that may assist in earlier identification of children with these disorders.

The research team is looking for children and their parents in the Dallas/Ft. Worth area who are interested in contributing to the current body of knowledge of pervasive developmental disorders. Children who participate should have the following qualifications: Ages 8-18 years old and current diagnosis of a pervasive developmental disorder (PDD), specifically High Functioning Autism or Asperger Syndrome.


International


United Kingdom

New Sign University of Cambridge, Autism Research Centre Asperger Syndrome (AS) Sibling Pair Project is looking for adults or children who are diagnosed with AS to take part in a new genes project, along with their brothers and sisters. This new worldwide study involves collecting a DNA sample and a questionnaire from individuals with Asperger Syndrome and their biological brothers and sisters. Providing a DNA sample is quick, easy and a completely painless process. This research may enable them to identify specific genes involved in Asperger Syndrome, furthering our understanding of the condition and possibly leading to earlier diagnosis. For further information please go to the link above or email Sally Wheelwright: sjw18@cam.ac.uk . This new study involves collecting a DNA sample and a questionnaire from individuals with Asperger Syndrome and their biological brothers and sisters. They claim the DNA sampling is quick, easy and a completely painless process - cotton buds are wiped inside the cheek. Participants are under no obligation to participate, but if you do take part, you may leave the study at any time without any need to give a reason. This study has the approval of the UK Multi Regional Ethics Committee. All data are held in strictest confidence for this study alone.


For more on the topic of Asperger Syndrome


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[Updated January 31, 2007]
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