“My favorite quote is [Winston Churchill’s] ‘Never, never, never give up’ and I like that motto because people always said that I would never do the things that I’m able to do, like they said I’d never be able to talk or go to college,” Blume said. “Because of my diagnosis, they always believed that but thanks to my mom, she never gave up on me. She would always try to help me learn to talk and how to go into a school environment and try to be the best that I can be and that’s why the motto is important to me.
“... I would like to be an inspiration to families who have children with autism because it shows them that just because you have a diagnosis that it’s not the end of the world. There are many people who can help you and if you’re always supportive and you support them no matter what then they’ll be able to move on and they’ll be able to live happy lives.”
For Tammy Blume, learning that her son was on the severe spectrum of autism was a shock and a rallying point about 19 years ago. After needing a short time to process the news, she researched the spectrum disorder and worked tirelessly with her son. Along with teaching him sign language as a form of communication, she acquainted him with shapes and colors with flashcards at the kitchen table and introduced him to various forms of therapy.
“They said he was severe autism and that he may never speak,” she said. “He wouldn’t accomplish a lot in life and that the way he was at that time, they had even said, ‘You may somewhere down the road have to institutionalize him.’ ... When I first heard [his diagnosis], of course, it was devastating. I didn’t know what to expect since they were saying all these negative, bleak things and I believed in my heart — and I had even told the professionals — that he would accomplish the things they said he wouldn’t. They just kind of brushed me off like, ‘Well, you believe what you want.’
“I just told my husband [Steve] when we got in the car that I needed 24 hours just to have pity on myself, just to cry and get everything out of my system. Then after that I was going to be geared to help him. That was my goal and that’s what I did. I did research. We went to the library and found out everything that we could, got information on autism, read books and books, went to different therapies and a lot of times, it’s sad to say, but we had to fight insurance companies to get the different therapies that we wanted but thankfully in the long run we did win. And thank God we were all determined and now he is going to be graduating from college.”
Referring to the saying “it takes a village to raise a child,” the Blumes also credit their son’s fellow students, teachers and paraprofessionals in the Bartow County School System for his success.
While he still considers himself awkward in social situations, Blume is excelling academically. In 2010, he graduated from Woodland High School as a member of the National Honor Society, ranking in the top 10 of his class with a 94.37 grade point average. After graduating from Georgia Highlands with an associate’s degree in computer information, he plans to earn a business degree at GHC before transferring to Kennesaw State University in the fall and pursuing a career in accounting.
“It’s very rewarding [to see his accomplishments] and it’s just unbelievable,” Tammy Blume said. “I am so proud of him and I’m so proud that he was determined ... and accomplished everything that he set out to do. ... When some people hear the word autism, whether it was [at] school [or not] of course you’re kind of leery. You don’t want to work with him. You might be thinking, ‘Oh, what am I facing?’ But every teacher, everyone who’s ever worked with him fell in love with him and went above and beyond.
“I would just say [to other parents] to never give up on your child, to always love them and to always strive to push them and, of course, to accept them, love them and [to] fight for their needs because I know that was a big struggle. I hope with having Steven go through the [school] system it might have made it easier for other parents to follow in that path.”
Autism — a complex developmental disability — generally materializes by a child’s third birthday and affects their ability to communicate. Some symptoms of an autism spectrum disorder, which are posted on Autism in Bartow’s website, www.autisminbartow.org, are opposition to change, difficulty interacting with others, trouble making eye contact and attachment to objects. While Autism Speaks Inc. cites last year’s U.S. Centers for Disease Control and Prevention’s statistics, a telephone survey of parents of children ages 6 to 17 that recently was released surpasses the 1 in 88 estimate, reporting 1 in 50 youth have autism.
According to www.autismspeaks.org, “Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder — not otherwise specified (PDD-NOS) and Asperger syndrome. With the May 2013 publication of the new DSM-5 diagnostic manual, these autism subtypes will be merged into one umbrella diagnosis of ASD. ... Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum — a ten-fold increase in prevalence in 40 years.
“Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States. ASD affects over 2 million individuals in the U.S. and tens of millions worldwide. Moreover, government autism statistics suggest that prevalence rates have increased 10 to 17 percent annually in recent years. There is no established explanation for this continuing increase, although improved diagnosis and environmental influences are two reasons often considered.”
In the past 15 years, Autism in Bartow has grown from a handful of individuals to providing assistance to about 175 families in Bartow County. Formed by Lyn Herring, the volunteer-based nonprofit provides resources and encouragement through its website and monthly meetings at Cartersville Medical Center.
For Sandi Marcus’ family, Autism in Bartow has been a supportive lifeline since her 9-year-old twin grandsons were diagnosed with the developmental disability at about 2.
“Autism now affects more children than AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy and Down syndrome combined and that is according to Autism Society of America,” Marcus said. “But yet they receive less funding, there remains no cause or causes or cure. Early intervention and early therapies are the best hope that a child can lead an independent life.”
Since 2007, the Cartersville resident has served on the grassroots committee for Ava’s Law and she still is advocating on its behalf. If passed in the Georgia General Assembly’s 2014 session, the bill would provide insurance coverage for “the evaluation, assessment, testing, screening, diagnosis and treatment of autism spectrum disorder using evidenced-based practices, which include pharmacy care, psychological care, behavioral health treatment, psychiatrist care and therapeutic care,” she said. Thirty-two other states already have passed similar legislation.
“The one therapy that has helped our boys the most has been applied behavior analysis, often referred to ABA, and that is not covered under insurance in our state,” Marcus said. “And that’s one thing that Ava’s Law would cover in the future. That’s the one thing that has helped the boys thrive. They’ve gone from basically functioning at a 1 1/2- to 2-year-old level to functioning at about a 5- or 6-year-old level.
“They’ve been receiving ABA therapy for almost five years. It’s very expensive and often times families in the state of Georgia — many of whom I know through bigger networks that I’m involved with — they often have to make the decision, like whether even to buy food for the week [or] to get therapy for their kids. It has put a severe financial strain on our family, [though] not to that extent. I do personally know families in Bartow County that have lost their homes trying to get treatment for their kids.”
As the nation observes Autism Awareness Month, Marcus looks toward the future, believing the needs of the autism community need to be addressed on a local, state and national level.
“This is a huge, huge social infrastructure ... not only for families but for first responders, law enforcement. Where are these kids going to live as they get older and the parents pass away,” she said. “It’s a huge concern ongoing to our society at large for Bartow County, for the state of Georgia and for the state of our nation. And we don’t have a federal plan. We don’t have a state plan to address the growing concern of the autism community.”
For more information about Autism in Bartow, visit www.autisminbartow.org. The group meets on the first Thursday of the month from 7 to 9 p.m. at Cartersville Medical Center’s Classroom No. 1.