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About the Autism Genetics and Human Diversity Project

Our purpose is to help researchers understand if there are genetic differences that may be unique to African-American families with autism and figure out how behavioral and environmental factors may contribute to delays in diagnosis and access to care.

Who can participate?

You may be eligible if your child:

  • Is aged 3 and up and has an autism diagnosis or suspected

  • Is African-American or black (Bi-racial is included)

  • Has no known genetic disorder (other than 16p and 15q mutations).

  • Has never participated in a genetics study on autism.

What is involved?

All appts can be completed remotely, in person, or a hybrid of the two (phone interviews and video conferencing).

You will be asked to complete questionnaires and interviews regarding your child’s medical history, behavior, social skills, and communication skills. Your child will undergo some behavior and cognitive (intelligence) testing.

 

A blood sample will be taken from your child, biological parents, and any sibling older than 3. This blood sample will be used to examine genetic factors that might be unique to African-American families with autism. For our out-of-state families, we collect saliva.

 

What is the time commitment to participate?

The entire study will last about eight hours, which will occur over a time block most convenient for your family.

 

What are the benefits of participating?

$250.00 (cash or Amazon gift card) and a behavioral assessment feedback report will be provided as our way of thanking you and your family for participating. We are transparent with our families; you will not receive genetic testing results from this research process.

How to Get Involved With the Autism Genetics and Human Diversity Project

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Frequently Asked Questions

1. Can my child participate if they are mixed race?

Yes, if the child with autism has African ancestry

2. What is the age limit for participation?

 

There is no maximum age to participate as long as the child with autism is age 3 or older.

3. Can my child participate if they have not been diagnosed with autism/ASD?

 

Yes, if you suspect your child has autism, they may be eligible to participate based on an assessment of their symptoms. 

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