Participate In Our Research

Who can participate in this study?

Families may participate if:

•   The family includes an individual over the age of three who has been diagnosed with autism.

•   The individual with autism does not have a known genetic cause such as Fragile-X or Rett's syndrome.

•   The family includes one member other than the individual with autism who has a history of language or learning difficulties or another individual with an autism spectrum disorder with associated language problems

•   The family consists of at least three other family members willing to participate.

•   Participating family members are willing to provide blood samples for the isolation of genetic material (DNA).

•   Family members are willing to participate in educational testing in the family's home.

•   English is the primary language in the home.

What will families be asked to do if they choose to participate in this study? 

If a family is interested in participating in the study, the research team will contact a family member to go over the initial screening script and questionnaire.  This first step provides families with an opportunity to find out more about the study, ask questions, and learn if their family is eligible to participate.  The full script and questionnaire last approximately 30 or 40 minute and can be scheduled at a convenient time, including evenings. 

If a family is eligible and wants to participate, visits are first scheduled  for the individual with autism and the other family member with a history of  language-learning problems.  Once those visits are completed, we will have other family members who have agreed to participate receive the testing battery and donate a blood sample for DNA analysis. All testing can be done in your own home.  We know how busy families are, so we try to be very flexible in our scheduling and can complete family testing over several visits, if necessary.

What are the risks of taking part in this study?

Participating in any study has some risks.  However, the risks involved with taking part in this study are low.

Blood draw:  There is a possibility that when getting blood drawn from a vein there may be slight pain, and a small amount of bleeding or bruising at the site where the needle is inserted.  The people who are responsible for drawing blood for this study are professionals who are used to working with individuals of all ages and abilities.  They will do all they can to make sure the blood draw is a pleasant experience.

Tests and Assessments:  There is a possibility that taking the tests or assessments may cause some mild stress.  These tests are similar to some standardized tests taken in school.  If for any reason these research tests indicate there is a need for additional clinical testing then a study doctor will talk to you about this and provide you with a referral for additional testing and treatment. 

What are the benefits of participating in this study?

By participating in this study you have the opportunity to help scientists to better understand the genetics of autism and language.  Though our findings will not be directly beneficial to your family right now, the things we learn will be very important in understanding the overall development of autism.  In the future these findings may lead to better interventions and treatments for individuals with autism.   If we do learn anything that will be helpful to the treatment or betterment of your child with autism or other family members then we will definitely tell you about these findings. 

In addition to helping us learn more about the genetics of autism and language you will be helping future NIMH approved and reviewed scientists in the same endeavor.  By providing a blood sample and doing the assessments for this project you will be anonymously adding your information to the National Institute of Mental Health's (NIMH) genetic repository for autism.  This means that future scientists will be able to apply to the NIMH to use the material for future research studies. 

Who should I contact if I am interested in participating?

You can contact the NJLAGS team by phone or email:

Phone: (732) 445-1224  

Email: autism@biology.rutgers.edu