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Milton Parent's Experience Segues into Advocacy Career

An autism mom helps families advocate for their children with autism spectrum disorders at Tufts Medical Center.

Bernadette Murphy Bentley was introduced to the world of autism in 2002, when her two-year-old son was diagnosed with an autism spectrum disorder.

Over the next several years, she learned everything she could about the disability, with help from other parents and caring professionals. A few years later, she began working to help others as she had been helped. She has been the Autism Resource Specialist at the Center for Children with Special Needs, Floating Hospital for Children at Tufts Medical Center, since 2006.  

Bentley received her Master's in Public Administration with a focus on disability issues from Suffolk University in 2010. She lives in Milton with her children, Sean, 10,and Maeve, 9. She talked with columnist Julie Fay about her recently-found life’s work.

What do you do?

I meet with parents after their child gets an autism diagnosis, to help them understand what it means and guide them toward the resources their child needs to reach his or her full potential. One such resource is the family’s local autism support center, which provides training and support for families as well as programming for children. I also connect parents with advocacy organizations such as the Federation for Children with Special Needs  and the Asperger’s Association of New England.

I educate parents about ARICA, the autism insurance law passed last year, and help them with insurance issues. I also provide them with a resource database of professionals who deliver services, such as Applied Behavior Analysis providers and speech and occupational therapists. Parents walk out of my office with a plan in place. 

My relationship with families doesn't end after that initial appointment. I continue to partner with them as they face new challenges and celebrate their child's achievements. I’m there for them whenever they call. 

How do you make a difference?

My most important role is to empower families to be the most knowledgeable and best advocates possible for their children. When parents are able to advocate effectively for their children, their kids' outcomes improve dramatically. The majority of children who get appropriate services will become adults who contribute to society instead of having to rely on society for care, and the world is a much better place when its citizens are able to contribute their talents and strengths. 

Why do you do what you do?

After I felt that my son was in the best possible situation with his education, I realized my heart was no longer in the publishing world, where I had worked for 15 years, and I had to help others as I had been helped. Ironically, it was a Milton autism parent, who worked in Human Resources at Tufts Medical Center, who told me about this job. It has been a perfect fit and it has meant so much to me to have a positive influence on the lives of hundreds of families and kids over the past five years. 

Autism is a terrifying word for parents to hear, but with all of the intensive supports available today and educators' better understanding of this disorder, children can make huge gains in their functioning. The key is for families to get needed services as early as possible, and for school systems and government agencies to understand that investing energy and funds in intensive intervention throughout a child's education saves money in the long run and allows children to achieve their full potential.

Autism Spectrum Disorders are developmental disabilities that can cause significant social, communication and behavioral challenges. The Centers for Disease Control estimates that an average of 1 in 110 children in the United States has an autism spectrum disorder. For more information, visit http://www.cdc.gov/ncbddd/autism/facts.html.

Kimberly Z April 26, 2011 at 01:36 AM
Great articles about some great people Julie!! Nicely done. XO Kimberly Z (NYC)
Julie Fay April 26, 2011 at 11:18 PM
Thanks, Kimberly! Hope you all are healthy and happy in New York!
Ellen Le Allision May 19, 2012 at 01:50 AM
You can't assume a kid has autisim just because he's stupid, or can't meet friends, or something like that. I have a kid who has a similar disorder, and I can't raise him without my husband.

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