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TRINITY Magazine 2009 | Marguerite Kirst Colston ’89

Marguerite Kirst Colston ’89: Shining a Light on Autism

By Jason Pier ’08

The path to nonprofit advocacy isn’t always a direct one right out of college, and sometimes stems from a single life-altering experience. Marguerite Kirst Colston left Trinity in 1989 with a dual degree in Latin American studies and economics, bound for a career in marketing in the financial sector. After 12 years in the financial sector, she made the switch to marketing communications for the International Foundation for Electoral Systems (IFES), a leading elections and democracy promotion organization. “The Trinity community spirit and the advocacy of the SNDs certainly prepared me well for this unexpected career change,” said Colston. She was thankful that the sense of mission that Trinity instills in its students made her unlikely transition seamless.

Colston had worked at IFES for five years when her son Camden was diagnosed with autism spectrum disorder, or ASD. Autism typically appears during the first two years of life, and is a complex neurodevelopmental disability affecting a person’s ability to communicate and interact with others. According to the Centers for Disease Control, one in every 150 American children born today will have an autism spectrum disorder, which occurs in all racial, ethnic and socioeconomic groups and is four times more likely to occur in boys than girls. Autism affects each individual differently, and to varying degrees, so it is called a “spectrum disorder.” There is no known singular cure of autism, and people with autism live a normal lifespan. In the 1960s, autism was blamed on “cold parenting.” Children were taken away from their families and institutionalized.

In 2003, Colston was told that autism was not treatable, and that she should prepare herself for the idea that her son would never be able to live independently. For years, her son didn’t react to his name or play games. Only after six years of missed diagnosis and battling for services did she and Camden get help and resources. Colston said, “It is this experience – of being told to basically fold the hand of cards dealt your child and move on, only to discover a whole world of possibility for him – that fires my advocacy every day.”

When Camden was six years old, having just made the difficult journey to diagnosis and treatment, Colston got a call from her father about a position at the Autism Society of America (ASA). Though she enjoyed her position at IFES, her father encouraged her to apply for the job. Colston found the idea of working for a cause that so directly affected her family appealing and terrifying at the same time. She wondered, “Did I have the skills to help this organization? Could I deal with autism 24 hours a day?” She had no experience with voluntary health organizations, but ASA felt her marketing and media background was a good match. She was hired as director of communications in 2006, and is currently the vice president of constituent relations. “I want to make sure I help my organization help families who are still being this disserved.” She oversees all programs, research, cause-marketing and media for the national office.

Colston’s son Camden is now eight years old, and is on the more severely affected end of the autism spectrum. He cannot talk, has some cognitive delays, major attention deficits and suffers significant social and behavioral challenges. “He is also adorable, mischievous, and, as I am finding, has a much larger capacity to learn than I imagined. Camden grabs my hand after dinner and takes me to the kitchen for his nightly serving of pretzels. When the sun sets, he runs to take a bath. When the school bus comes every morning, he walks on with a grin and finds his seat,” says Colston.

Colston says that although autism is still diagnosed as a mental illness, physicians, educators and the general public are beginning to understand that it is a disability which can be treated and understood. The awareness that ASA is now working on is to help the public see the great potential of people with autism, and to include them in schools, community settings and employment. “We have a ways to go but I see a lot of progress,” said Colston.

Autism Spectrum Disorder has no known single cause, and Colston thinks it is unlikely that any cure will be found in the foreseeable future because it exists heterogeneously with a myriad of other medical issues. “It is treatable,” she continued, “and by that we mean that medical, educational and related interventions (such as speech, occupational and behavioral therapies) can help a child learn, speak and interact if started young.” She pointed out that in some clinical settings, children diagnosed by age two and given adequate early intervention are entering kindergarten with their typical peers with little support. “This is tremendous progress and it is really exciting.”

The Autism Society of America has been the leader in advocacy and awareness since it was founded in 1965, and there are now 170 chapters serving families affected by autism and giving them support. “But I think the most important thing ASA does is that we include people with autism (verbal and non-verbal) on our board of directors and on our advisory panels,” said Colston. Every program ASA conducts has a person with autism working on it or advising staff on how to implement it. “This is how minds are changed – when the person affected by the condition has the opportunity to direct how he or she is served. I’m very proud of our organization, as we are one of the few to do this,” said Colston.

Currently, the Individuals with Disabilities Education Improvement Act is only 14 percent funded, and Colston stresses the importance of fully funding this initiative so that states can meet the federal mandates, and all children with autism can benefit from the most appropriate public education. Moreover, all government services to support people with autism and their families currently ends at 22 years of age. Colston emphasizes that the government must fund adult services. “The biggest cost, and the biggest crisis, is the lack of services for adults.”

One of the initiatives Colston is most proud of is called “Sensory Friendly Films®.” She piloted a partnership with AMC Theaters so that children who have autism and their families can go to the movies. In a normal movie setting the sound is too loud, the lights too low and sensory changes often make children with autism scared and anxious. They will often make noise that disturbs other moviegoers. So, AMC and ASA started showing sensory-friendly films once a month in 10 cities last August. The sound is turned down, the lights are up a bit and the “Silence is Golden®” policy is waived. In only seven months, the program has grown to 48 cities. So far, the feedback has been so tremendous that AMC is expanding the program and working with ASA to start an employment program for people with autism. Colston relates a personal experience with the program, “The first movie I took Camden to was this year, and I cried through the whole thing because it was the first time I could go to the movies with both my children.”

Sadly, Colston said that in today’s world, most of the money raised for health conditions goes to looking for cures. The government currently doesn’t spend money to deal with the challenges of pain, difference and disability that come with chronic disorders or genetic conditions. “As a Catholic, my faith teaches me that we must respect the dignity of every human being,” says Colston. She works for ASA and is also a member because the mission of the organization focuses on assuring that every person with autism can live a full life with dignity. “In this way, I am very blessed to be able to work in a place that allows me to live my faith every day. The past two years have seen an incredible increase in the awareness of autism as a disability and chronic medical condition, versus a mental illness.”

Colston closes with this thought, “If you have a child with autism, or know someone who does, the best first thing you can do is get support – from friends, family or a support group like ASA. It is so easy to get isolated and scared, and there really is a lot you can do and a lot of people who care.” For more information, visit ASA’s website at www.autism-society.org or call 1-800-3AUTISM.

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