Losing the Diagnosis, but Not the Problems

A release from the American Academy of Pediatrics:

About one in 14 toddlers diagnosed with autism spectrum disorder (ASD) no longer met the diagnostic criteria in elementary school, but most continued to have emotional/behavior symptoms and required special education supports, according to a study to be presented Sunday, April 26 at the Pediatric Academic Societies (PAS) annual meeting in San Diego.

Previous studies have shown that ASD symptoms resolve in some children over time. It is not clear, however, if these children continue to have cognitive, behavioral or learning deficits.

Researchers, led by developmental pediatrician Lisa Shulman, MD, reviewed data on 38 children diagnosed with ASD in 2003-2013 whose symptoms had resolved when they were re-evaluated about four years later. The children were among 569 children living in the Bronx who had been diagnosed with ASD by a multidisciplinary team at a university-affiliated early intervention program.

The children came from racially, ethnically and socioeconomically diverse backgrounds, a population generally underrepresented in autism studies. Forty-four percent were Hispanic, 36 percent were Caucasian, 10 percent were African-American and 46 percent were on Medicaid.

Clinicians who made the original diagnosis also provided interventions and monitored response to treatment. Over time, they noted that ASD symptoms in some children resolved, but most continued to have other learning and emotional/behavioral symptoms needing attention.

"Autism generally has been considered a lifelong condition, but 7 percent of children in this study who received an early diagnosis experienced a resolution of autistic symptoms over time," said Dr. Shulman, director of Infant and Toddler Services and the Rehabilitation, Evaluation and Learning for Autistic Infants and Toddlers program at the Children's Evaluation and Rehabilitation Center/Rose F. Kennedy Center at Albert Einstein College of Medicine/Children's Hospital at Montefiore.

"The majority of the children at original diagnosis displayed intellectual disability but at the point of resolution of autistic symptomatology displayed normal cognition," Dr. Shulman added.

Although the social impairment of autism resolved and cognitive functioning (IQ) improved, researchers found that 92 percent of the children had residual learning and/or emotional/behavioral impairment. Only three of the 38 children had no diagnosis.
Language/learning disability was found in 68 percent, and nearly half had externalizing problems such as attention-deficit/hyperactivity disorder or disruptive behaviors. In addition, 24 percent had internalizing problems such anxiety, obsessive-compulsive disorder or selective mutism. Finally, nearly three-quarters of the children continued to require academic supports, such as a small class setting or resource room.

"When an early ASD diagnosis resolves, there are often other learning and emotional/behavioral diagnoses that remain," said Dr. Shulman, associate professor of clinical pediatrics at Albert Einstein College of Medicine and attending physician, Children's Hospital at Montefiore. "Understanding the full range of possible positive outcomes in this scenario is important information for parents, clinicians and the educational system."

Dr. Shulman will present "When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?" from 3:45-4 p.m. PT Sunday, April 26. To view the study abstract, go to http://www.abstracts2view.com/pas/view.php?nu=PAS15L1_2750.2

​This study was supported by a grant from the Children's Evaluation and Rehabilitation Center/ Rose F. Kennedy Intellectual and Developmental Disabilities Research Center.
- See more at: https://www.aap.org/en-us/about-the-aap/aap-press-room/pages/Some-children-lose-autism-diagnosis-but-still-struggle.aspx#sthash.bi4XtmYK.dpuf

California Budget Pushback

Mary Omoto writes at The California Disability Action Network:

Thousands of people with developmental disabilities, families, advocates, community-based providers, workers, regional centers and others filled to capacity the hearing room, overflow rooms, and hallways at the State Capitol for a 6 hour Senate Budget Subcommittee hearing and at a protest rally in Los Angeles – both held at the same time yesterday – in opposition to Governor Jerry Brown’s proposed $750 million reduction in State general fund spending for regional center and other developmental services.

Well over 1,000 people filled to capacity the main hearing room, balcony, overflow rooms, hallways at the State Capitol were even larger than the enormous crowds that packed a similar Assembly Budget Subcommittee hearing on February 3^rd, covering the same budget issues. Many were protesting outside the State Capitol.

The lines of people wanting to testify filled both sides of the main hearing room, and then continued outside the room down the entire length of the hallway to the other end of the building (see photo above). Well over 150 people –including from people from an impromptu meeting immediate after the end of the hearing by Sen. Mark DeSaulnier, subcommittee chair, with nearly 200 advocates who were among the many who could not get into the main hearing room. The gave the senator a standing ovation when he entered the room for his willingness to meet and hear additional public comments.

The turn-out for the February 3^rd and 10^th budget subcommittee hearings were the largest in several years, according to State Capitol police and other security.

California Healthline reports on the hearing:

It's unclear how much will be changed from the budget proposal that axes $6 billion in health-related services, including the $1.7 billion in cuts to Medi-Cal and cutbacks in regional centers for people with developmental disabilities that were being protested yesterday.

Those regional centers were set up by passage of the Lanterman Act back in 1969, which first established the state program for the developmentally disabled, said advocate Shirley Dove.

"The proudest day in California history was when the Lanterman Act was passed," Dove said. "And the worst day in California would be watching it go."

The Los Angeles Daily News has an audio slideshow of the Van Nuys rally.

Dan Walters writes in The Sacramento Bee:

Hundreds of developmentally disabled Californians and their parents and care providers packed the Capitol on Thursday to angrily or tearfully denounce Gov. Jerry Brown's 2011-12 budget.

It was the latest outpouring of opposition to cuts in health and welfare services he says are needed to close a chronic deficit. Testifying en masse at almost daily legislative hearings, advocates for the poor, the aged and the disabled have hammered on two themes:

• Billions of dollars in service cuts would imperil recipients' lives, force them into expensive nursing homes, emergency rooms and even jail cells or, in the case of child care, make it tougher for parents to hold jobs; and

• Many cuts would run afoul of federal entitlement laws and/or court decisions and would be tied up in litigation for months, if not years.

...

What if Brown and legislators defy the opposition and whack safety-net services, thus impressing voters who respond by approving the tax increase, only to see the cuts later blocked in the courts?

That would obviously punch a big hole in the budget, but it would also feed suspicions that it was merely a cynical ploy to fool voters.

Poll on Learning Disabilities

A learning disability (LD) -- such as dyslexia -- keeps a student from performing up to his or her cognitive level. Under the law, it is separate and distinct from other disabilities such as autism. In practice, however, the distinction is blurry. First, kids with other disabilities may also have an LD. Second, autism does interfere with learning, even among high-functioning kids.

Keep such things in mind when reading a new survey from the Emily Hall Tremaine Foundation of New Haven, which makes grants in the areas of art, environment and learning disabilities. The poll has a margin of error of three points. According to the survey:

Three in four Americans (75%) also incorrectly associate autism with learning disabilities. This is much more likely to be true among both the general public (82%) and parents with a minimum of a college degree (81%). Age also plays a role in the belief that autism is linked to learning disabilities (78% of those 18 to 54 vs. 69% of those 55+). Women, in general, both moms and nonmoms, also see a strong relationship between the two.

...

Although educators are also less likely than Americans in general to mistakenly associate emotional disorders (58% vs. 64%, respectively), attention deficit disorder/attention deficit hyperactivity disorder (58% vs. 69%, respectively) and autism (68% vs. 75%) with learning disabilities, sizable numbers of educators do equate these. Also worth noting, 57% of educators associated learning disabilities with substance abuse on the part of a parent, compared to 61% of the general public. This marks a substantial decline from the seven in 10 educators (70%) who in

2004 said the two are linked. Educators and the general public are equally as likely as the population to erroneously link learning disabilities with mental retardation (79% compared to 80%).

Learning Disabled Enrollment

Education Week reports:

After decades of what seemed to be an inexorable upward path, the number of students classified as learning-disabled declined from year to year over much of the past decade­—a change in direction that is spurring debates among experts about the reasons why.

The percentage of 3- to 21-year-old students nationwide classified as having a “specific learning disability” dropped steadily from 6.1 percent in the 2000-01 school year to 5.2 percent in 2007-08, according to the most recent data available, which comes from the U.S Department of Education’s 2009 Digest of Education Statistics. In numbers, that’s a drop from about 2.9 million students to 2.6 million students.

In this light, the data on autism are all the more remarkable. While other categories of "specific learning disability" are going down, autism is going up. See numbers in thousands:

• 1995-96 ..... 28
• 1997-98 ..... 42
• 1998-99 ..... 53
• 1999-00 .... 65
• 2000-01 .... 94
• 2001-02 ... 114
• 2002-03 ... 137
• 2003-04 ... 163
• 2004-05 ... 191
• 2005-06 ... 223
• 2006-07 ... 258
• 2007-08 ... 296

Here is another way to look at it: in 1995-96, kids with autism accounted for 0.5 percent of children served. In 2007-2008, that figure had increased ninefold, to 4.5 percent.