BANGOR, Maine — Jacob Lewis did not enjoy the fourth grade. He said he regularly felt cornered and frustrated in class. He got into trouble often, but he did not know why. He could understand instructions from teachers, but he didn’t get why they were given, so he didn’t follow them, prompting teachers to scold him.
When frustration overwhelmed him, Lewis would shout, push things off desks and knock over tables and chairs, his mother, Amanda Morin, a former kindergarten teacher and early childhood development specialist, recently recalled.
Lewis, now 12, was diagnosed with a mild form of autism during the summer before fourth grade, his mother said. The diagnosis he received can include children who have all the basic traits of autism but are able to perform well in school, according to Andrew Kahn, the psychologist who diagnosed Lewis.
That was the case with Lewis, Morin said, which meant he did not automatically qualify for the kinds of accommodations in school that a child with a more severe diagnosis would be entitled to.
“The system did not really understand what I wanted it to,” Lewis said while seated on a couch in his living room in Bangor.
He spoke articulately about the disability, though he preferred not to make eye contact, focusing instead on three juggling balls in his hands.
“No one would really acknowledge it wasn’t just behavioral issues,” he added.
Autism is on the rise nationwide. Parents, psychiatrists and special education scholars say it is essential for schools to have teachers who are trained specifically to work with students who have the disorder, but Maine schools aren’t there yet.
“Maine definitely has too few professionals and education technicians to work with children with [autism spectrum disorder],” Deborah Rooks-Ellis said. She is the director of the Maine Autism Institute for Research and Education at the University of Maine. Although there are no numbers available to show exactly how many teachers are trained, she added, “It’s critical, for sure.”
Between the 2004-05 and the 2011-12 school years, the number of students in Maine diagnosed with autism doubled, reaching 2,646, according to the most recent data from the Maine Children’s Alliance.
In December 2004, 36 students at the Bangor School Department were diagnosed with autism. Last December there were 83.
The Portland school department has seen an even greater increase, with 31 students diagnosed in 2004 and 121 in 2013.
That does not necessarily mean the number of students with the disorder has risen, said Patti Rapaport, the special education director for the Bangor School Department. Research has provided doctors with more tools to better identify the disorder.
Rapaport said her department is well equipped to work with the vast array of learning differences teachers see. Next year, there will be one school where a speech therapist, rather than an autism-trained teacher, will work with autistic students, she said.
“I don’t think that we’re feeling the impact like some school districts are,” she said, referring to the rising numbers of students who have autism. “We’ve had the resources to handle it.”
Incredibly complex problem
Diagnosing students with autism, then determining the course of action necessary is incredibly complex, according to Kahn, the psychologist who is contracted by the Bangor and Hampden school departments.
“I think that every part of the system is stressed,” he said. “There’ll never be enough happening quickly enough.”
Lewis was fully aware people thought he was a bad kid, according to Morin, and it troubled him. Distraught, he would tell his mother everyone hated him.
He had no trouble grasping concepts and demonstrating his knowledge, so he was a star student on paper. It looked like he was just choosing to misbehave, Morin said, which made it difficult for the school to justify designing a new learning program, known as an individualized education plan.
Finally, when Lewis was still in fourth grade, it reached a tipping point. Morin remembers Lewis coming home from school one day and saying, “Mom, I want to kill myself.”
Lewis’s case manager helped him gain admittance first to Acadia Hospital in Bangor, then to Spring Harbor, a psychiatric hospital in Westbrook. It was around this time he finally received an individualized education plan.
After the treatment, Lewis enrolled at the Fairmount School in Bangor, where there was a classroom for special education students. As part of his plan, he could communicate with his teachers using visual cards when his emotions were running high. Eventually he was brought back into the regular classroom, and now, about to finish sixth grade at William S. Cohen Middle School, Morin said he’s doing well.
All students on the autism spectrum need teachers who are trained to work with their seemingly atypical behaviors, Rooks-Ellis said.
Although there are numerous colleges in Maine that offer courses in how to work with students who have autism — such as at the University of Maine, the University of Southern Maine and Kennebec Valley Community College — special education programs take a generalized approach, Rooks-Ellis said.
“Special education teachers may get an overview, but they may not get that really specialized training,” she said.
There are other professional development opportunities, including workshops offered by Eastern Maine Counseling and Testing, which is where Kahn works.
New autism institute opens
The Maine Autism Institute for Research and Education was created by the Maine Department of Education in partnership with UMaine to add significantly to those opportunities.
The institute, which opened in January, will offer three-day professional development sessions to give teachers and education technicians specific training in how to work with children who have autism.
Accommodating students with autism requires teachers to have a bank of finely honed skills. Teachers, parents and administrators must also be coordinated in their efforts, special education professionals said.
“You have to explain the culture and function of each individual child to every individual on the team,” Kahn said. A team includes the child’s parent or parents, a general education teacher, a special education teacher and an administrator.
Families often find themselves in the position of needing to work hard to get their child the services they feel he or she needs. This can feel like a battle for resources, Morin said.
In Maine, the percentage of the expenditures that go toward special education has gone up from 13.4 percent in the 2003-04 school year to 15.2 percent last year, according to data from the Maine Department of Education. The percentage of students in Maine’s public schools who receive special education services has stayed steady over the last five years, hovering around 16 percent.
As diagnoses in autism have gone up, diagnoses of some other disabilities have gone down. Special education directors believe students with autism have always been in their system, but doctors have gotten better at identifying it.
Cathy Dionne, director of programs and administration at the Autism Society of Maine, said her organization spends more time than ever educating parents on what their childrens’ rights are and how to gain access to services.
The most common question she heard from parents used to be “What is autism?” Dionne said.
“Now we’re on the other end,” she said. “They want to know what are the treatments and services.”
Morin said she has had countless meetings with school officials at her son’s schools to first determine what the school would do to help Lewis during his outbreaks, then to ensure the agreed upon plan was being followed. Her background in education gave her the vocabulary and knowledge to know what to ask for and how to ask for it.
“I knew the laws inside out,” she said. But it occurred to her other parents might not.
“I’d walk out and I’d think, ‘What happens to parents who don’t know their kids’ rights? What happens to parents who don’t know how to speak up?’”
A mother helping others
Morin began working with other families she knew who have children with autism, preparing parents for meetings.
To broaden her message, she wrote a book, “The Everything Parent’s Guide to Special Education,” which was published in May.
“For me it became, ‘How do I sort of use what I know to make sure that my kid isn’t the only kid who has a parent sitting there advocating?’” she said.
Lewis hopes to some day write and animate video games, but his short-term goal is to start a blog about the “adventures and pitfalls” of having autism.
Morin will continue her advocacy work. She is working with the National Center for Learning Disabilities to build an online resource for parents and children who have learning disabilities called Understood.org.
“There’s something very intimidating about sitting in front of a group of people who are supposed to be the experts on education,” Morin said about the individualized learning plan meetings. “I think what parents don’t really get is that they are the experts on their own child.”
An earlier version of this story said Spring Harbor was located in Westport. It is located in Westbrook.