Ellen M.* is a 47-year-old single mom whose four-year-old son is diagnosed with something called pervasive development disorder not otherwise specified, a disorder on the autism spectrum. While he's very verbal, he sometimes struggles with expressing his needs. He has behavioral issues and several other medical issues, such as vision and gastrointestinal problems.
Ellen works fulltime in a public sector job she's held for 25 years. Her son's numerous medical and school appointments means she's away from work a lot, something her colleagues struggle with, even though she's earned the time off and is always accessible by email and phone. She uses her sick days and other accrued time off when she has to shuttle her son to and from various appointments.
Because her son looks physically normal, her co-workers don't understand why she has to spend so much time out of the office. Fortunately, she has a family-oriented supervisor who understands and accommodates her needs, but she says she sometimes gets pushback from her co-workers who tell her, "You're never here."
According to Centers for Disease Control and Prevention estimates, an average of one in 110 children in the United States has an autism spectrum disorder, or ASD. ASDs are reported in all racial, ethnic and socioeconomic groups yet are, on average, four to five times more likely to occur in boys than in girls.
When a child is diagnosed with an ASD or attention-deficit disorder or attention-deficit-hyperactive disorder, it falls on parents to advocate on their child's behalf while navigating the health care and education systems - a responsibility that requires a lot of time and energy. For working parents, such a diagnosis might mean decreased productivity at work, because they're worried about their child or having to leave early to get their child to a medical appointment.
Helping people navigate the educational needs of a child diagnosed with special needs is one of the reasons Debra Schafer founded Education Navigation, a company that helps parents advocate on behalf of their autistic children. She calls her services "education care," and it's a voluntary benefit designed to increase the engagement and productivity of employees with children in need of specialized support and/or education services in school. Her goal is to increase the competence and confidence of parents so they're able to effectively advocate for their children from preschool through college.
As a former HR director, Schafer has a personal understanding of the challenges employees face when juggling work responsibilities with a child with special needs. Schafer began coaching parents in a private practice about special education, working with parents nationwide on a variety of education issues - everything from an early intervention with a child newly diagnosed with autism to a high school student diagnosed with ADHD and dyslexia transitioning to college.
She sees education care, much like child care and elder care, as another benefit employers can offer that will help maintain their competitive edge. "It became apparent that one of the ways we can help employers help their employees is by driving these services into corporations as an employee benefit," she says.
Education Navigation will survey organizations to give HR/benefits professionals and C-suite executives an idea of the numbers of employees who are either directly affected by autism and related disorders or who simply want to learn more about the topic.
'Most employees don't mention it'
At InterDigital Communications, a 325-employee organization based in King of Prussia, Pa., a voluntary, confidential survey by Education Navigation found that about 11% of employees at the wireless technology company had children or grandchildren with special needs.
"I knew of a couple of employees who had children with special needs but on the whole, most employees don't mention it to their employer unless they really need help with something," says Sharon Vernot, senior manager of payroll and benefits with InterDigital.
Education Navigation offered a voluntary lunch & learn session to interested employees at InterDigital. The program was well-received, says Vernot, with between 30 and 50 employees attending the session; it also was available via video conference to the company's New York office. One employee even asked if she could send her husband to the session since she was traveling at the time. Another attended because her neighbor has a child with special needs, while another employee went because of her nephew.
Many employees might not feel comfortable talking about their special-needs children for fear of discrimination, but Vernot believes that offering the session "makes us proactive. I think it makes us a good employer that we're even willing to recognize it and not push it under the rug like it doesn't exist."
Ellen says she would love for her employer to offer something like Education Navigation, if only for the simple fact that it might help educate her co-workers. "People are ignorant about the amount of time I have to be out of the office," she says. "It would be beneficial to the company because when you have a happy workforce, you have a productive workforce."
In addition to lunch & learn sessions, which can be tailored to specific topics based on the survey results, Education Navigation can provide what it calls "onsite navigator services." Specialists can visit the worksite a half-day or full day per month, and employees can schedule appointments with them to go over any issues and develop an action plan. The company can also coordinate email, phone or Skype sessions for employees during evenings and weekends.
Education Navigation will also offer assistance in setting up employee support groups. Schafer says that after lunch & learns, employees are often shocked to discover how many of their colleagues are dealing with special-needs children and want to create some kind of support group.
The company also will set up voluntary benefit packages whereby employees can purchase a certain number of support hours from Education Navigation with a preferred-provider rate.
And while employee assistance programs do a good job of providing employees with elder care, child care and even education care resources, they may lack the navigational tools that working parents require.
"Many EAPs do address issues related to special education needs or special needs," says Schafer. "Yet for parents of children in special education, there's the need for individualized, targeted support and navigational assistance - more so than perhaps in other areas, where general information might be helpful."
For example, to qualify for special education a child must have an individualized education plan from the school district. These IEP documents can be lengthy, full of jargon and overwhelming for parents. Or, a parent is asked to attend meeting to try to have their newly diagnosed autistic child deemed eligible for special education, but the parent is unsure how to prepare for the meeting. Or, the child's already in special education, but there are behavioral issues necessitating a call from the school once or twice a week to come collect the child.
"You can see how it can become a crisis situation very quickly," says Schafer. "Employers have the ability to provide employees with supports and services to help."
Facts about autism
Autism spectrum disorders are a group of developmental disabilities that can cause significant social, communication and behavioral challenges. People with ASDs handle information in their brain differently than other people.
ASDs are "spectrum disorders." That means ASDs affect each person in different ways, and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interatction. But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.
Types of ASDs
There are three different types of ASDs:
* Autistic disorder (also called "classic" autism.) This is what most people think of when hearing the word "autism." People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.
* Asperger syndrome. People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability.
* Pervasive developmental disorder - not otherwise specified (also called "atypical" autism.) People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.
Signs and symptoms
ASDs begin before the age of three and last throughout a person's life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had.
Diagnosing ASDs can be difficult since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at the child's behavior and development to make a diagnosis.
ASDs can sometimes be detected at 18 months or younger. By age two, a diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until much older. This delay means that children with an ASD might not get the help they need.
There is currently no cure for ASDs. However, research shows that early intervention treatment services can greatly improve a child's development. Early intervention services help children from birth to three years old learn important skills. Services can include therapy to help the child talk, walk, and interact with others.
Even if a child has not been diagnosed with an ASD, he or she may be eligible for early intervention treatment services. The Individuals with Disabilities Education Act says that children under the age of three years (36 months) who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention system at the state level.
In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal ASD diagnosis.
Source: Centers for Disease Control and Prevention.
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