Respite care is short term care that helps a family take a break from the daily routine and stress. It can be provided in the client’s home or in a variety of out of home settings.

Respite care is an essential part of the overall support that families may need to keep their child with a disability or chronic illness at home.

Since not all families have the same needs, respite care should always be geared to individual family needs by identifying the type of respite needed and matching the need to the services currently available, or using this information to develop services where none exist. Once identified, it is also important for families to have ready access to that type of respite, in an affordable form.Regardless of the type of respite program utilized, the emphasis should be on orienting services toward the entire family. It is also important to bear in mind that the child will change as he or she grows and develops into an individual with his or her own personality and ideas.

In many families, it is common for children to attend day care or after-school care, interact with peers and adults outside the family, and stay with a child care provider while their parents enjoy an evening out. Respite provides these same opportunities for children with special needs.

For older individuals with a disability, respite can assist in building skills needed for independent living. Since the most appropriate living situation for many adults with a disability is in a group home or other supported environment, out-of-home respite care can enable families to test this option, explore community resources and prepare themselves and their family member with a disability for this change.

States and communities are recognizing that respite care also benefits them. On average, the costs for respite services are 65 to 70 percent less than the costs of maintaining people in institutions (Salisbury and Intagliata, 1986). The cost effectiveness of respite services allows scarce tax dollars to be used for additional community based services. During the previous decade, over 30 states passed legislation for in-home family support services, including respite care, using either direct services or voucher systems (Agosta and Bradley, 1985).

With the passage of the Children’s Justice Act (Public Law 99-401) and its amendment, the Children’s with Disabilities Temporary Care Reauthorization Act (P.L. 101-127), respite care has gained support at the Federal level. This legislation authorized funding to states to develop and implement affordable respite care programs and crisis nurseries. Unfortunately, while this Federal funding provides relief for some families, access and affordability continue to be issues for many families in need. Every state dispensed different versions of the services, and individual agencies devised their own criteria for length of time and funding allotments.

Thus, in spite of the availability of government funding in some areas, many respite care programs must charge for their services. This practice reduces expenses for providers and makes it possible to serve more families. However, charging for respite services can limit their availability to those families who can afford the fees.

RESPITE CARE SUGGESTIONS FOR PARENTS Parents deciding to leave their child who has special needs in the care of someone else, either in or outside their home, may experience a variety of hesitations. It is important that as a parent you become comfortable with your decision and develop the trust critical to maintaining the peace of mind necessary for relaxation and enjoyment. One way to accomplish this goal is to begin now to think about respite care and whether you, your family, and your child with special needs would benefit from it.

Many agencies and organizations have information on respite care services. (For a referral, contact the National Respite Locator Service, operated by the ARCH National Resource Center            (919) 490-5577       ). In general, seek out groups or professionals who work with children your child’s age. For example, if your child is in preschool, contact the school and discuss the need for respite care with the staff. If there is a parent group associated with your school, or if there is a local parent group concerned with children who have needs similar to your child’s, ask them. If your child is an adolescent, talk to the staff at his or her school or, again, identify parent groups in your area with needs similar to yours.

The following list presents some of the types of groups you may want to contact in seeking services. Many will be listed in your telephone book. If you experience difficulty locating the organization in your community, often a state contact can be made. Additional resources are listed at the end of this Briefing Paper.

State and Local Government Agencies

* State Department of Mental Retardation

* State Developmental Disabilities Council

* State Program for Children with Special Health Care Needs (formerly Crippled Children’s Services)

* Departments of Health and Human Services, or Social Services

* Department of Mental Health

* State and local Departments of Education

* State Protection and Advocacy Agency

State and Local Disability or Support Groups

* The Arc

* United Cerebral Palsy Associations, Inc.

* Autism Society of America

* Brain Injury Association

* Mental Health Association and CASSP

* Spina Bifida Association

* National Easter Seal Society

* Parent Training and Information Center

* University Affiliated Program(s)

What should you know when seeking respite care services in your community?

Ask yourself the following questions. The information will be helpful to you when contacting agencies

in your local community about respite care.

1. What kind of services do I need? (Long-term, short-term, or both? Why?)

2. Do I prefer services in my home, a cooperative, or in an outside setting? (This will depend on the

type of service you need.)

3. Can I donate my time to a cooperative, or is it better for me to obtain help from a respite agency?

4. Does this agency provide the types of service I need?

5. Is there a cost for the service?

6. If I can’t afford the service, are there funds available to assist me?

7. Who is responsible for the direct payment to the provider?

8. How are respite providers selected?

9. Are the providers trained?

10. How many hours of training have they had?

11. Do these providers have training in First Aid and CPR?

12. What other areas are covered in their training?

13. For out-of-home care, does anyone monitor the facility for safety and health measures?

14. Will I be able to have a prior meeting with the care provider?

15. Will I have an opportunity to provide written care instructions to the provider?

16. Will I have an opportunity to assist in training the provider with reference to my son’s/daughter’s needs?

17. What is the policy that covers emergency situations?

18. Will I have to carry additional insurance to cover the provider while he/she is in my home?

19. Is there a policy which deals with mismatches between providers and the family?

20. Can I request a specific care provider and have the same person with my child each time?

21. Will the respite care provider care for my other children too?

_____________________________________________

ADDITIONAL RESOURCES

ARCH National Resource Center. (1995). “ARCH national directory of crisis nurseries and respite care programs.” Chapel Hill, NC: Author. (Available from ARCH National Resource Center, Chapel Hill Training-Outreach Project, 800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514. Telephone:             1-800-473-1727      ;             (919) 490-5577      .)

Borfitz-Mescon, J. (1988, April). “Parent written care plans: Instructions for the respite setting.” Exceptional Parent, V (No.), 20-25.

Carney, I., Getzel, E.E., & Uhl, M. (1992). “Developing respite care services in your community: A planning guide.” Richmond, VA: The Respite Resource Project, Virginia Institute for Developmental Disabilities. (Available from the Respite Resource Project, Virginia Institute for Developmental Disabilities, Virginia Commonwealth University, PO Box 843020, Richmond, VA 23284-3020. Telephone:            (804) 828-8587      .)

Hill, J.W. & Ledman, S.M. (1990). “Integrated after-school day care: A solution for respite care needs in your community.” Richmond, VA: Virginia Institute for Developmental Disabilities, Virginia Commonwealth University, Respite Resource Project. (Available from Respite Resource Project, at

the address listed above.)

Karp, N., & Ellis, G.J. (Eds.). (1992). “Time out for families: Epilepsy and respite care.” Landover, MD: Epilepsy Foundation of America. (Available from the Epilepsy Foundation of America. To order this publication please call:             1-800-213-5821      .)

Kniest, B.A., & Garland, C.W. (1991). “PARTners: A manual for family centered respite care.” Lightfoot, VA: Child Development Resources; Richmond, VA: Virginia Institute for Developmental Disabilities, Virginia Commonwealth University, Respite Resource Project. (Available from Respite Resource Project, at the address listed above.)

____________________________________

ORGANIZATIONS

CLEARINGHOUSES AND TECHNICAL ASSISTANCE:

ARCH National Resource Center for Crisis Nurseries and Respite Care Services — Chapel Hill Training-Outreach Project, 800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514. Telephone:            (800) 473-1727      ;             (919) 490-5577      . The mission of the ARCH National Resource Center is to provide support to service providers through training, technical assistance, evaluation, and research. The Center provides a central contact point for the identification and dissemination of relevant materials to crisis nurseries and respite care programs. Numerous fact sheets and general resource sheets (including state contact sheets) are available about respite care and crisis nursery care. ARCH also operates the National Respite Locator Service who’s mission is to help parents locate respite care services in their area. Please contact them at             1-800-773-5433      .

OTHER ORGANIZATIONS:

The Arc (formerly the Association for Retarded Citizens of the United States) — 500 E. Border Street, Suite 300, Arlington, TX 76010. Telephone:             (800) 433-5255      ;             (817) 261-6003      ;            (817) 277-0553       (TT).

Association for the Care of Children’s Health (ACCH) — 7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814. Telephone:             (800) 808-2224      ;             (301) 654-6549      .

Association for Persons with Severe Handicaps (TASH) — 29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204. Telephone:             (410) 828-8274      ;             (410) 828-1306       (TT)

Autism Society of America — 7910 Woodmont Avenue, Suite 650, Bethesda, MD 20814. Telephone:

(800) 3-AUTISM      ;             (301) 657-0881      .

Brain Injury Association (formerly the National Head Injury Foundation) — 1776 Massachusetts Avenue N.W., Suite 100, Washington, DC 20036. Telephone:             (800) 444-6443      ; (202) Epilepsy Foundation of America — 4351 Garden City Drive,

Landover, MD 20785. Telephone:             (800) 332-1000       (outside of MD);             (301)459-3700      .

National Down Syndrome Congress — 1605 Chantilly Drive, Suite 250, Atlanta, GA 30324. Telephone:             (800) 232-6372      ;             (404) 633-1555      .

National Down Syndrome Society — 666 Broadway, New York, NY 10012-2317. Telephone:             (800) 221-4602      ;             (212) 460-9330      .

National Easter Seal Society — 230 West Monroe Street, Suite 1800, Chicago, IL 60606. Telephone:

(800) 221-6827      ;             (312) 726-6200      ;             (312) 726-4258       (TT).

Sick Kids (need) Involved People (SKIP) — 545 Madison Avenue, 13th Floor, New York, NY 10022. Telephone:             (212) 421-9160      .

Spina Bifida Association of America — 590 MacArthur Boulevard N.W., Suite 250, Washington, DC 20007. Telephone:             (800) 621-3141      ;             (202) 944-3285      .

United Cerebral Palsy Associations, Inc. (UCPA) — 1660 L Street N.W., Suite 700, Washington, DC 20036. Telephone:             (800) 872-5827      ;             (202) 842-1266      .

Zero to Three/National Center for Clinical Infant Programs — 734 15th Street, NW, Suite 1000, Washington, DC 20005-1013. Telephone:             (202)638-1144      . (Voice);             1-800-899-4301      (Publications).

FAMILY SUPPORT PROJECTS:

American Association of University Affiliated Programs (AAUAP) — The AAUAP represents the national network of University Affiliated Programs (UAPs) in the United States. The 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 inservice training to agencies, service providers, parent groups, and others. For information on a UAP in your area, write: AAUAP, 8630 Fenton Street, Suite 410, Silver Spring, MD 20910. Telephone:             (301) 588-8252      .

The Beach Center on Families and Disability — This center conducts research and training, and disseminates information relevant to families who have members with developmental disabilities or serious emotional disturbances. Write: The Beach Center on Families and Disability, The University of Kansas, 3111 Haworth Hall, Lawrence, KS 66045. Telephone:             (913) 864-7600      .

Children and Adolescent Service System Programs (CASSP) — CASSPs are federally-funded programs located throughout several states and localities, designed to improve service delivery for children and adolescents with emotional disorders. CASSP provides funding to states for research and training centers and for technical assistance activities. To contact a CASSP in your area, or to obtain a publications list and additional information, write: National Technical Assistance Center for Children’s Mental Health, 3307 M Street, NW, Suite 401, Washington, DC 20007. Telephone:            (202) 687-5000      .

National Clearinghouse on Family Support and Children’s Mental Health — The Center provides research and training, and disseminates information relative to serious emotional disorders and family support issues, including a newsletter. Write: National Clearinghouse on Family Support and Children’s Mental Health, Portland State University, P.O. 751, Portland, OR 97207-0751. Telephone:            1-800-628-1696      ;             (503) 725-4040      .

The birth of a child with a disability or chronic illness, or the discovery that a child has a disability, has profound effects on a family. When parents learn that their child has a disability or special health care need, they begin a process of continuous, lifelong adjustment. Adjustment is characterized by periods of stress, and during this time, family members individual feelings of loss can be overwhelming, shutting out almost all other feelings. Coping with uncertainty about the child’s development may interfere with the parents ability to provide support to each other and to other family members.

Over the years, there has been a growing awareness that adjustment to the special needs of a child influences all family members. This awareness has generated interest and has led to the development of support services for families to assist them throughout the lifelong adjustment process. Within the diversity of family support services, respite care consistently has been identified by families as a priority need.

 

We are busy making  Autism/PDD Resources Network  your community site, so send us your stuff! Kids’ artwork or stories, comments, complaints…whatever!! You can email artwork or photos as attachments.

1) Danny’s story – age 16 2) Ben’s writing – age 8 3) Poem by PDD child, age 11                        Danny – made recently at age 16. Amanda – age 13  

Danny – made at age 7                                          Daniel – age 9Stephanie – age 10                 Danny- age 6                   Jonathan – age 12

Amazon.com Children Books

Kids Corner    Encyclopedia Thinking Skills Fun Yahooligans The Electronic Zoo Library for Schoolkids The Nine Planets Smithsonian Museum Life in the White House NASA-Space Science Old Sturbridge Village Space Image Library  Research-It Martian Sun-Times   Support: Sibshops and Other Sibling Programs

 

        © Copyright Autism-PDD Resources Network

Sensory Integration Therapy is used with individuals who have sensory integration difficulties. Jean Ayres, an occupational therapist, first described sensory integration dysfunction as a result of inefficient neurological dysfunction. The auditory, visual, tactile, taste, smell, vestibular and propioceptive senses are what give us information about the world around us. Individuals with sensory processing disorders have senses that are inaccurate and send false messages. Children and adults with hypersensitivity overreact to stimuli, while others have hypo-sensitivity, which prevents them from picking up information through their senses. Sensory malfunction can also be an inability to understand and organize sensory information when it is received.

 

Sensory integration dysfunction symptoms are many and varied depending on which sense or senses are perturbed. When he has auditory sensitivities a child may cover his ears, overreact or underreact to noise, or try to escape from groups. Tactile sensitivities can be indicated by a seemingly high tolerance for pain, refusal to keep socks and shoes and sometimes clothes on, difficulty in brushing teeth and hair, dislike of having hair washed. Visual issues may be apparent if a child is sensitive to light, likes to watch things spin or move (tops, hands on a clock), spins himself or other things or turns lights on and off. These are a few examples of behaviors that display sensitivities in certain areas; Sensory issues are not autism-specificMany children and adults who have sensory disorders do not have an ASD. Although Sensory Integration Difficulties are not a diagnostic criteria for ASD, practically all adults on the autism spectrum report having some kind of difficulties in sensory processing.

 

Sensory Integration Therapy is practiced by occupational therapists, who contend that many behaviors exhibited by children and adults with autism are an attempt to avoid certain types of sensations or to seek preferred stimuli, in order to balance out their nervous system. There are different strategies that are used. Occupational therapists who are well trained in sensory integration have designed individual programs and sensory diets that have led to improvements in behavior and skills by assisting individuals with ASDs to process and use sensory information. When looking for therapy providers, it is important that you choose therapy providers who have experience with ASDs and the age group of the person seeking treatment.

 

For more information: http://www.comeunity.com/disability/sensory_integration/resources.html

 B O O K S  T O  E X P L O R E 

Targeting Autism : What We Know, Don’t Know and Can Do to Help Young Children With Autism and  Related  Disorders – Calling attention to recent advances in early identification and educational therapy, this book offers up-to-date research findings within a scientific framework enriched by author’s own observations and narratives from parents and adults with autism.

Asperger’s Syndrome: A Guide for Parents and Professionals is honest, yet optimistic about the strengths and weaknesses associated with children having this disorder. Helpful and practical, will be useful for quite a while.

The World of the Autistic Child walks you through the prospect of Autism/PDD from the initial diagnosis through treatment. Balanced discussion of the multiple issues any parent needs to consider. If you haven’t already, you will soon discover that the treatment community is highly polarized. This book help you sort out what you read and hear elsewhere.

Play and Imagination in Children With Autism goes beyond the usual autism literature by examining the complex problems children with autism experience in reciprocal social interaction, communication and imagination,  by looking closely at the nature of the disorder in relation to play’s role in childhood culture and development, as well as contemporary intervention practices.

The Out-Of-Sync Child: Recognizing and Coping With Sensory Integration Dysfunction is not about autism, however, a very common  condition in autistic children; can manifest itself in excessively high or low activity levels, problems with motor coordination, over sensitivity or under sensitivity to sensations and movements, and other symptoms. This book carefully details many helpful routines and remedies.

Teaching Children With Autism:. discuss the behavioral characteristics of autism, intervention methods, and key topics such as spontaneous language, along with concrete ways to support families, focus on long term gains and short term problem solving.

Laying Community Foundations: For Your Child With a Disability : How to Establish Relationships That Will Support Your Child After You’re Gone address specific ways to help disabled children, teenagers and adults establish these crucial long-term relationships, offer insight into relationships with siblings, give general time frames for  accomplishing the various steps in a long term care plan, and offer examples and checklists.

Autism : Preparing for Adulthood is clear and practical, essential for anyone concerned with the challenges facing teenagers and young adults with Asperger syndrome, PDD/NOS or high-functioning autism.

Growing Up With Language: How Children Learn to Talk is a reader friendly book, that is not intended to offer a course in linguistics.Throughout the book, Baron illustrate many language learning milestones.

Teaching Children With Autism to Mind-Read: A Practical Guide for Teachers and Parents
This is the first guide on applying Theory of Mind–the ability to infer the mental states of others and use this information to interpret their behavior–to children with autism. It concentrates on the effective treatment of social and communicative abnormalities in children with autism, guiding the reader through the underlying experimental and clinical principles. It then gives a graded program for teaching children each of these skills. 

The Complete IEP Guide: How to Advocate for Your Special Ed. Child  clearly outlines IEP, how to arrange the best possible program for a child, how to resolve disputes with school districts, have  letters and forms which can be copied, and more.

Pragmatic Development (Essays in Developmental Science) provides an integrated view of how children acquire
the various subsystems of rules for appropriate and communicatively effective language use,  including expression of communicative intents, participation in conversation, and production of extended discourse.

Intervention Planning for Children With Communication Disorders: A Guide for Clinical Practicum and  Professional Practice  explores the problem solving and decision making process involved  in clinical intervention planning across categories of children’s communication disorders. Includes case studies of four children with language, phonology, fluency, and voice disorders.

Soon Will Come the Light : A View from Inside the Autism Puzzle
Thomas McKean, an autistic author,  successfully provides the reader with a new wealth of insight into areas known only to those individuals with autism.
McKean’ description of what he experiences when he “tunes out” is quite fascinating.  He enters a world of alternate reality created within the boundary of his imagination. A scary darkness leads to majestic mountains, a castle, a dragon field, a domed city, ocean, sunken ship, red fluorescent caverns, forest, and abandoned mansion. He expresses a fear of exploring too far and being unable to find his way back… How many of us wonder what our children with autism see when they have that far away look in their eyes?

 

Description

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