We are the Conner family.   I'm Barry, the dad, and Delia is the mom.   We met long ago near Myrtle Beach, South Carolina, when we were both on vacation with our families.  We are the proud parents of two autistic sons, Brent (who will soon be 17) and Vincent (who is 11).

Brent has always been non-verbal.  He uses PECS (Picture Exchange Communication System) and some sign language.  Following a barely helpful visit to what was in 1987 called the Johns-Hopkins "Kennedy Center for Children" (of which the Kennedy Krieger Institute is a much improved descendent), he was enrolled in the full day pre-school at Central Special School at age 3-1/2.  He has been in a class at Central Special every since.   He is almost always very healthy; thank goodness, since he is prone to ingesting the most unsanitary things!

Vincent seemed to be born talking.  At first he didn't give us any indication that he was anything like Brent.  He always had good eye contact, was very vocal, and progressed through most of the baby milestones quicker than Brent had.  But, at 3 years old he still wasn't able to hold a conversation.  He was excellent at repeating things, but not at engaging in dialogue or answering questions.  He started pre-school in a mixed-capability class at Central Special later that year.  He was in that program for 2 years, and it turned out to be just the springboard that he needed.  Since kindergarten he's been mainstreamed at our local school, while receiving some special education services in occupational therapy and speech, as well as benefiting from some modifications via his IEP.  About 3 years ago his diagnosis was fine-tuned to Asperger Syndrome, which fits him more accurately.  This is his first year in middle school, and despite some rough bumps at the start, things are looking better now.

We have been members of the Autism Society of America and this chapter for many years, but you may have never seen us at a meeting.  We struggle with the same issue that many of you face: finding respite care workers that can handle Brent.  We felt very isolated, even though we were getting some information by reading the ASA's monthly newsletter; it isn't the same as actually interacting with other parents who are in the same situation.

The Internet has essentially changed our life, especially with re-gards to connecting with other parents of autistic children with-out needing to find a respite worker to enable us to do so. This connection gives us inspiration, patience, and information on

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Autism and pervasive developmental disorders are perplexing medical mysteries which can only be solved with continued and dedicated research. Multiple important approaches are being used to understand, treat, and eventually cure and prevent autism. These approaches include special schooling methods, drug trials, and functional brain imaging.

Another approach is to study the brain directly when an autistic individual dies. Understandably, issues of death and tissue donation are rarely discussed, if even considered, when a child does not have an immediate life-threatening illness. However, death occasionally occurs in normal children and children with autism and pervasive developmental disorders. The National Institute of Child Health and Human Development (NICHD) has funded Brain and Tissue Banks for the specific purpose of arranging for the collection of tissue from individuals with autism and other developmental disorders. The tissue is then distributed to qualified scientific investigators who are dedicated to autistic individuals and their families.

The Brain and Tissue Bank at the University of Maryland shares the goals of Cure Autism Now (CAN) and the Autism Tissue Program. The Autism Tissue Program is a joint project of the Autism Society of America (ASA) Foundation, the National Alliance for Autism Research (NAAR) and the National Institutes of Health.  As Project Coordinator for the NICHD Brain and Tissue Bank at the University of Maryland, my mission is to increase awareness of tissue donation in the autistic community.

If you have questions or would like more information about tissue donation, please contact me by phone at (800) 847-1539 or by e-mail at ddime001@umaryland.edu. We also have a web site that provides information about tissue donation: www.btbankfamily.org.