Family Experiences

“As the father of a daughter who has limited speech I was very interested in the research study being done by the CARE program at BU.  We have participated for two years in a row and have had a great experience.  All the researchers treated us royally. The research was done at my daughter’s pace.  She was never stressed.  I think she had fun doing it.  I learned a lot about my daughter as well.  I now have a much better understanding of what words she knows and understands.  I also learned that she has a great capacity to follow directions in a setting that was unusual to her.  I went from thinking “She’ll never do that!” to “What else can she do?”  That was one of the best things that I took away from this experience.  I am a strong believer that whatever we can do to help understand autism is something we must do.  This is one of the areas that has not had much focus and it is also one of the most frustrating ones to deal with as a parent.  Thank you CARE for working on this an helping us understand our own children!”

Father of minimally verbal teen with autism, February 2015

This family was interviewed throughout their experience with the CARE lab for a piece in a Boston University publication.

Emily

You can read their story, Unlocking Emily’s World, here. 

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“Most families are naturally reluctant to participate in activities which have the potential to cause trauma to their children.  This is doubly the case for parents of autistic children, who are less resilient than their neurotypical peers, and this is precisely why we have refused to have our son participate in research studies on autistic individuals—until hearing from the Boston University Center for Autism Research Excellence!  For the first time we felt confident that these researchers actually knew how to work with autistic children, and would successfully accommodate their needs during the course of the study!  Even though our son is too old to benefit intellectually from the Brain Systems for Language Study at CARE, we believe that improving his tolerance of participation in medical imaging will help in the event that he ever requires those tests for his own medical care.  And if the data from his tests helps other children, that will be well worth the effort.  Our son has shown absolutely no ill effects, and has genuinely enjoyed his time with the many staffers at CARE.  We have personally found them to be delightfully caring, intelligent, and good-humored, and thus heartily encourage other families to participate in their studies.”

Parents of a minimally verbal adolescent with autism, January 2015

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“Our girl gets very anxious in new environments and needs to have her ipad music blasting, but the BU staff were patient, caring, and in the most gentle way helped her feel comfortable and welcome. This is worth remarking because the staff who worked with her is young, but obviously very well selected for their warm calming demeanor. Our girl had a great time with them and was just fine the second visit. The BU staff was caring and patient with me too, after getting badly lost and almost canceling. We made through the first stage just fine and now our girl is adapting to being inside an MRI– she did great and I’m grateful for the confidence they instill in her. This is important work that involves long questionnaires, but it’s worth the time, and our kid always leaves with a smile.”

Parents of a minimally verbal teen with autism, January 2015

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“Our son has been involved in several studies over the years with the Autism research that BU and MIT have committed themselves to doing. Over the years we have been to different sites at both universities and we plan on continuing to be involved. The staff are always highly professional as well as sensitive to the needs of our son and they are very well equipped to handle a multitude of variables. We all know that when working with children, especially children with ASD, it takes a special kind of person to be able to handle things with grace and be able to accommodate the “questions” and behaviors of the children participating. They explain everything in detail to all of us in terms our son understands and they give him the opportunity to explore things and ask as many questions as he needs to feel comfortable with the process. They never rush us through things and they always make you feel very calm.

The staff and study programs all have been a very rewarding experience for us. Our experiences with the studies our son has participated in have actually helped our son to be more flexible and willing to understand the world around him. They have given him the opportunity to help to develop strategies others may be able to use to understand ASD and how to possibly prevent it in the future. This has given him the pride that he needed to boost his self-esteem knowing that he is part of a bigger picture. It also reminds him regularly that there are many, many other people with ASD and each of them are unique individuals without labels.

We would definitely encourage others to get involved with the CARE program and help to understand how ASD works and how we can potentially make differences in the future to minimize the impact for others.”

-mother of adolescent with autism