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Invisible disability

Charlotte Sun - 6/1/2017

Some people who don’t know Paul Blasco have called him “creepy,” and it hurts his feelings.

Blasco, 42, said he is just misunderstood and suffers from the life-long effects of Fetal Alcohol Spectrum Disorder (FASD).

FASD has been called an “invisible disability” that is sweeping through communities across the country.

Blasco still lives with his adoptive mother, J Rouleau, and sleeps on a couch on their boat in Port Charlotte.

“It’s aggravating,” said Blasco about being labeled negatively. “People don’t know who I am. I try to be nice to everybody.”

FASD does not have a cure, has life-long effects and is caused through a mother drinking alcohol while pregnant. According to the U.S. Centers for Disease Control and Prevention, “few estimates for the full range of FASDs are available” but it may affect 2 percent to 5 percent of school-age children in the U.S. and some Western European countries.

The problem is that people just don’t understand the disease and how prevalent it is, so there is a dire need for more awareness, according to Rouleau and Blasco.

“Over 50 percent of women of childbearing age drink alcohol, and only 39 percent are aware of FASD,” states the website for the Florida Center for Early Childhood.

The center, located in Sarasota, is the first and only FASD clinic in the state.

“The need for evaluations, training, and education is vital,” according to the center’s website. “FASD is the leading known cause of intellectual disabilities in Western civilization.”

Complicating it all is, that for birth parents, there is an element of blame and some physicians may be reluctant to make a diagnosis, according to Kathryn Shea, president and CEO of The Florida Center for Early Childhood.

“Many women deny they drank,” said Shea, adding that alcohol is legal and usually leaves the system within six hours.

“There’s no safe amount and no safe time,” said Shea about drinking while pregnant or planning to become pregnant. “We say it’s not worth the risk.”

Some people who are afflicted can appear physically “normal” — except it causes lifelong disruptions in cognitive, linguistic and social development.

“It’s difficult sometimes,” said Blasco, who has a job detailing cars that he is passionate about. “My boss at work, he understands. … He helps me out, he’s giving me more responsibility.”

But the judgments can be quick from people who don’t know Blasco very well.

“A lot of people don’t understand it. They kind of make fun of me and stuff,” Blasco said.

FASD is more prevalent than autism, Down syndrome, muscular dystrophy and spina bifida combined, according to the Honolulu-based nonprofit FASD Communities.

“Because some symptoms are similar, FASD is commonly misdiagnosed as ADHD,” states information from FASD Communities, which was founded six years ago by a group of parents to provide supportive housing, vocational opportunities and life skills to people across the country affected by FASD.

In 1996, a study found that alcohol produces more serious neurobehavioral effects in the fetus compared to other substances of abuse including cocaine, heroin and marijuana, according to Shea.

“We’re so focused on the opioid crisis, which we should be, but there tends to be poly drug users,” said Shea.

For example, the Florida Department of Children and Families is involved in every FASD case called into the agency by hospitals.

However, it’s not clear exactly what the numbers are involving FASD. DCF could not immediately provide data for how many kids in foster care have FASD, either.

“While we are involved, the classification falls under ‘substance exposed’ within our database so we would not be able to pull out the precise stats,” said Natalie Harrall, DCF communications director for the SunCoast Region.

The clinic Shea runs provides assessments that usually take about four hours to complete by a multidisciplinary team, along with interventions, training and education.

It’s funded primarily by the Florida Department of Health through legislative appropriations that don’t always come through, Shea said.

“Currently, we have a wait list … through January of 2018,” said Shea, who is also an adoptive parent to a son with FASD.

Like Blasco living with his mom — Shea’s 28-year-old son, Seth, still lives with her too.

“Fewer than 20 percent of adults with FASD live independently,” according to FASD Communities. “Without help, many end up homeless, pregnant or in trouble with the law, costing taxpayers millions of dollars.”

Blasco has had brushes with the law and is listed as a registered sex offender in Florida for a decades-old conviction from another state.

Rouleau said her son’s conviction involved a line of misunderstandings, where due to his FASD, he tends to be agreeable with people and admitted to something that was false. Blasco claims he didn’t actually commit the crime, despite the out-of-state conviction.

People with FASD typically function like someone half their chronological age and that leaves them as “easy targets for physical, criminal, financial and sexual dangers beyond their understanding,” according to FASD Communities.

Like Blasco’s biological mother, Seth’s birth mom also drank alcohol while she was pregnant.

Warning labels on alcohol are small and some myths still perpetuate since the diagnosis evolved in the 1970s, such as a little alcohol while pregnant is OK, according to Shea.

Both Shea’s son and Blasco exhibit some physical hallmarks of the disorder, including, but not limited, to thin upper lips, and little to no ridge — called a philtrum — between the nose and mouth.

The physical signs can be faint and there are varying degrees of the disease, which is also the leading cause of preventable mental retardation in the U.S.

However, it’s still possible and common for someone with FASD to have an IQ score within the normal range — as is the case with Blasco.

Children who are affected have a hard time in school. They take a while to figure things out — or have what’s called a “slow cognitive pace.”

“Students with FASD are 10-second people in a one-second world,” states information from the Florida Department of Education.

Blasco said he doesn’t know anyone else in the local area with FASD, and he thinks support groups would be helpful.

“I think it would help people who go through what I’m going through, people who are being judged all the time,” Blasco said.

Most other people, he said, “they don’t care.”