WHO CAN PARTICIPATE?
- English speaking families with at least one family member suspected of having an autism spectrum disorder and language impairment along with at least one other family member with a history of language comprehension, speaking or reading problems
- Individuals where the cause of the ASD is unknown and not associated with any known genetic disorder such as Fragile X or Rett Syndrome
- Families where all family members are willing to give a blood sample for genetic analysis
WHAT KINDS OF THINGS DO PARTICIPANTS DO?
- Family members with a diagnosis of an ASD or suspected of having an ASD will receive ASD diagnostic testing and a physical examination.
- All family members suspected of having a language based learning impairment will receive a battery of tests to confirm that diagnosis.
- If both of these criteria are met, then the entire family is invited to participate in the full study and receive age-appropriate assessments very similar to the kinds of activities performed in school. Total assessment time per family member is approximately 3-5 hours.
- Parents will be asked to fill out several questionnaires related to family history.
- All family members will be asked to donate a blood sample.
Once all family members have completed testing, each family member will receive a $25.00 gift card in appreciation for their participation.
WHERE IS THE TESTING DONE?
All testing can be done in a single day or spread over several days in the comfort of the family's home and is based entirely on their own schedule. We are available on weekends and evenings if that is the preference. Our study staff of geneticists, developmental pediatricians, psychologists, speech language pathologists and research assistants have many years of experience working with all ages and all types of developmental disabilities and welcome your questions and comments during our visit to the home.
ARE THERE ANY RISKS OR BENEFITS TO A FAMILY'S PARTICIPATION?
Blood Draw: Sometimes there might be slight pain or bruising from the blood draw.
Tests and Assessments: There is a possibility that taking the tests or assessments may cause mild stress. These tests are similar to some standardized tests taken in school, but sometimes adults feel a bit uncomfortable since they haven't performed any of these tasks in many years. However, participating in the comfort of their homes often helps to allay any anxiety.
Parents will receive a letter for each child describing the standardized assessments they received. It is not a clinical assessment but describes each measure, your child's score, and where the score falls in relation to scores of children of the same age. We also can offer professional referrals if you feel you would like additional testing.
The most important benefit of your participation is in knowing that you and your family have made a significant contribution to the genetic study of autism that can impact future generations in so many important ways.
Complete and submit the Participant Inquiry form.