Raising an autistic child in NJ takes a toll on finances and family, mom says

The cost of raising a child with autism is staggering. Roughly $1.4 to $2.5 million compared to just $300,000 for a child without special needs, according to the Center for Special Needs at the American College.

Donna Clemente, a mother of three in Ocean County, has a 14-year-old son with autism. She recalled the doctor warning her when Anthony was diagnosed at age three-and-a-half about the disease being expensive.

"We had no idea just how much it is," said Clemente.

Anthony is nonverbal, has severe sensory issues, and behavioral issues that are getting harder to deal with as he gets older, Clemente said choking back tears.

"It's just really hard, especially now because he's in puberty, so we're going through a really hard time," Clemente said.

Clemente shared that her son gets violent, but also noted not all autistic children do. She recently had to get a harness for him to prevent him from hitting other people.

Anthony takes a special van to attend school out of the Toms River District and in New Brunswick, at Rutgers Douglas Campus.

Although she spoke highly of the school, Clemente explained many of the therapies and treatments her son needs are not provided there and are not covered by her insurance.

"We've got a lot of debt that's accumulated because we have had to pay these doctors out of pocket," Clemente said. She added that her son is malnourished and doctors haven't been able to figure out what's causing his weight loss. Many times they have to seek doctors that practice Integrated Medicine, who also not accept insurance. She recently had to cancel an appointment and lab work because of the expensive.

"We can't afford it. I mean, we've been doing this for so many years, just trying to get Anthony healthy," Clemente said. "We don't even get Social Security for our son because they claim that my husband makes too much money, where he really for a family of five, he really doesn't," she added.

Anthony also is on a gluten-free and dairy-free diet that can be costly. Clemente buys organic items and special foods that cost more money, such as a loaf of bread that's $8.

In addition to the financial stress, the emotional toll also has an impact on the entire family and the marriage, according to Clemente. Sometimes activities that her other two children do take a backseat because she said she has to dedicate more time to taking care of Anthony or doing her own research about autism.

One out of 68 children nationwide is diagnosed with Autism Spectrum Disorder (ASD), but in New Jersey it's 1 out of 41, based on the most recent figures released by the Centers for Disease Control last month. The New Jersey rate marks an increase of 12 percent from the previous 1 in 45 statistic released two years ago, according to Autism New Jersey.