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Losing an autism diagnosis?

by Michelle K. Wolf

March 20, 2013 | 7:39 am

Ethan Gorin was diagnosed with autism at age 2. After intensive therapy, he lost his diagnosis. Photo by Joshua Plotke

Ethan Gorin was diagnosed with autism at age 2. After intensive therapy, he lost his diagnosis. Photo by Joshua Plotke

When Ethan Gorin was a toddler, he threw terrible tantrums, spun around in circles and repeatedly opened and shut drawers while counting. He didn’t respond when others called his name, and he was incapable of playing quietly by himself. 

“The hardest part was his inability to sleep,” said Rebecca Ishida, his mother. 

The solution for his waking up every 20 minutes as a baby was being rocked very hard, a remedy that turned out to be part of Ethan’s sensory needs. He was diagnosed with autism at the age of 2.

That’s not what this story is about, though. It’s about what happened four years later, after he received intensive applied behavior analysis (ABA) therapy through the Center for Autism and Related Disorders (CARD), based in Tarzana.

Ethan lost his diagnosis. He was no longer considered autistic.

Now, at age 10, Ethan is fully included in a traditional classroom at a public school in Beverly Hills and is doing well academically. He golfs with Dad, plays video games with Mom and takes to the basketball court with his many friends. He is outgoing and auditions for commercials. 

Ishida said she was hopeful that Ethan, who had been evaluated as having moderate autism along with severe behavior problems, would lose his autism diagnosis eventually. “I had to make recovery the goal,” she said.

“Recovery.” It’s a term that, when applied to autism, conjures up controversy, simultaneously offering the promise of a Holy Grail and fears of false hope.

The questions are both practical and philosophical: Is an autism diagnosis always a lifelong disability? Should parents spend thousands of dollars and years of their lives pursuing 30 to 40 hours a week of behavioral interventions in the hope of reversing their 2-year-old’s autism diagnosis? With one in 88 American children now identified as being on the autism spectrum — a tenfold increase over the last four decades — these questions take on extra urgency. 

A recent study funded by the National Institutes of Health (NIH) brought the issue to the fore when it was released earlier this year. It asserts that there is a subset of children who were accurately diagnosed with autism when young, but now, after intensive intervention, function no differently than their mainstream peers.  

Experts have long known that a small percentage of children diagnosed with autism — somewhere between 1 and 20 percent, according to a report by The New York Times — no longer qualify for that diagnosis a few years later. It was believed in most cases that this was the result of mistaken diagnoses, but that assumption is challenged by the new NIH study.

Researchers at the University of Connecticut’s Storrs campus recruited 34 people, ages 8 to 21, who had been diagnosed with autism in early childhood and later had their issues resolved. Each was considered to be in the higher-than-average range of the autism spectrum in social skills when first diagnosed. After years of therapy, they were able to join mainstream classes without needing autism-related special-education services, although some did have learning differences related to anxiety or attention deficit hyperactivity disorder. 

To remove the possibility of previous misdiagnosis, autism experts reviewed early diagnostic reports. As a second step, a diagnostic expert, without knowing the child’s current status, reviewed reports in which the earlier diagnosis had been removed. The NIH researchers described these children as having achieved “optimal outcomes.” 

Deborah Fein, the study’s principal investigator, said in a phone interview that “you can’t predict at the time of diagnosis” who will achieve optimal outcomes and who will not. “You need to give the child at least two years of good intervention” before a medical professional can make a determination, she said.

Fein and her team are still studying data on the types of intervention received by the optimal outcome group, but one thing is clear to her: Kids won’t outgrow autism on their own. Those who recover require early and high-quality treatments and probably amount to 10 to 25 percent of the total population of diagnosed children, she said.

Still, many young adults with autism feel the concept of recovery is damaging. A statement from the Autistic Self-Advocacy Network says that the idea encourages “service providers to emphasize normalcy above other more meaningful goals.” 

Other advocates with autism feel that the diagnosis is an integral part of one’s identity and can have positive attributes, such as an excellent memory or high math skills. As one blogger wrote, “[Autism] is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her.”

There are other implications. Losing an autism diagnosis can mean missing out on other support, such as assistance from Regional Centers, state-funded agencies that provide lifelong help for children and adults with diagnosed developmental disabilities. It may also make it harder to receive Social Security Income, which is restricted to adults who can’t work due to their high level of disability.

Nonetheless, CARD doesn’t shy away from the issue. Its Web site touts “Recovery Is Possible” and offers reports that many of its patients have achieved, in its words, “recovery” from autism. The difference is that it has a more liberal definition of the term than the NIH study, which required the loss of an autism diagnosis and other social criteria.

“We never say to parents that your child is absolutely going to recover,” said Jonathan Tarbox, a psychologist and CARD’s director of research and development. “The goal of our ABA treatment is to maximize independence. … For a majority of patients, the maximum level achieved is not always an optimal outcome.”

Through CARD, Ethan received 40 hours a week of ABA treatment, which is the most common type recommended. Developed by Ivar Lovaas, a UCLA psychology professor in the 1980s, it breaks down the basic skills of life into thousands of drills, such as pointing, identifying pictures and reading facial expressions. Additionally, Ethan received occupational and speech therapy, switched to a gluten-free diet, took dietary supplements and more.

ABA therapy may have helped Ethan, but it’s not for everyone. Ido Kedar, a 16-year-old from West Hills who is severely autistic and nonverbal, found it frustrating and indicated it delayed his communication through typing.

“I was in an ABA program starting at 40 hours a week from the age of 3 to 7. My progress was slow and I was bored beyond belief,” he wrote in an e-mail. “I couldn’t show them I understood and even read [he had taught himself how to read], so I had drills where I pointed to flashcards of basic objects like ‘table’ or ‘house,’ hour after hour, month after month.”

Today, Ido communicates by typing on his iPad or letterboard without assistance. A  student in traditional classrooms at a local high school, he receives excellent grades, blogs, presents at autism conferences and authored the book “Ido in Autismland: Climbing Out of Autism’s Silent Prison.” 

He thinks a more reasonable therapeutic approach for severely autistic people would be for “people to teach interesting lessons, talk normally to us, give us exercise to help our mind/body communication and teach us to type for communication.”

Alycia Halladay, senior director for environmental and clinical sciences at the advocacy group Autism Speaks, said she hopes the recent study becomes part of a long line of research about how interventions are useful and what types produce the best results. If the study sparks any kind of legislative changes, Halladay said she hopes it will be to allow for the coverage of intervention.

“This kind of study really does show that positive outcomes are possible,” she said. “This wasn’t everyone, and this wasn’t spontaneous.”

Of course, not everyone diagnosed with autism is interested in change.

“For some individuals, the autism diagnosis is not a disability at all. It’s a difference, and it’s something that they don’t feel needs to be changed at all,” Halladay said. “On the other hand, there are individuals who do want help or whose parents do want help.”

For Connie Lapin, a long-time parent advocate from Northridge who has a 44-year-old son with severe autism and who has influenced state and federal laws, the whole concept of recovery raises numerous red flags. She looks back at her son’s days of ABA therapy as some of the hardest of her family’s life, given its all-encompassing nature. She feels that it took away from celebrating and appreciating her son for who he was.

Lapin also is concerned that young families may spend so much time and money on the suggested level of intensive therapy that they won’t be prepared for the long term. Spending all their resources on early therapy may burn them out before adolescence, when other issues such as depression sometimes surface, she said.

While the new NIH study highlights the need for early diagnosis and early intervention, the hope that this will lead to optimal outcomes or recovery is tempered by the reality that only a minority of children achieve this. Lapin fears that parents of younger children could come away with “unrealistic expectations and false hopes.”

“If you don’t achieve the ‘optimal outcome’ after trying everything, then what?” she asked. “This is a very slippery slope. I’ve seen families destroy their lives trying to ‘cure’ their child by spending every penny, and marriages can implode.”

Michelle K. Wolf is a special-needs parent activist and nonprofit professional who has worked in the governmental and nonprofit sectors. Visit her blog at jewishjournal.com/jews_and_special_needs.

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