Posted by Amy Daniels, Ph.D., Autism Speaks assistant director of public health research

This month, the journal Autism Research publishes a special issue titled “Global Perspectives on Autism.” It is the first time an autism journal has dedicated an entire issue to global research.

As a public-health scientist, I am keenly interested in improving services and quality of life for all individuals and families affected by autism spectrum disorder (ASD). So I am encouraged to read about the strides researchers are making in building awareness and services across the globe. They are recognizing that we must engage local communities and autism families if we are to translate research into action and improve lives in real and lasting ways. Importantly, this must include respect of and appreciation for the needs of different cultures.

The issue opens with “Perspectives from the Common Ground,” an editorial on the importance of global research in both advancing basic science and improving each country’s ability to deliver autism services. As the writers point out, a balance must be struck between delivering services today and advancing basic science that can revolutionize services in the future.

A second editorial, “Autism and the Grand Challenges in Global Mental Health,” summarizes the challenges to conducting autism research in low- and middle-income countries. It highlights the importance of overcoming barriers by engaging local communities, investing in low-cost tools for screening and diagnosis, and training community health workers and parents to deliver interventions.

The editorials are followed by “Global Prevalence of Autism and Other Pervasive Developmental Disorders.” Prevalence is the proportion of individuals in a population with a given condition. Based on 33 international studies, the authors estimate average global prevalence to be 1 in 160. The number is similar to some of the earlier prevalence estimates in the U.S. Since then, more recent estimates have found much higher U.S. prevalence, the most recent being 1 in 88. The authors acknowledge that autism prevalence in many countries remains largely unknown. Still, estimating prevalence gives a picture of autism’s overall burden. It also helps local advocates build awareness and lobby for services and policies to benefit their communities.

The series continues with two research reports made possible by funding from Autism Speaks. (See grant descriptions here and here.) The first is “Screening for Autism in Mexico.” The researchers used a Spanish-language version of the Social Responsiveness Scale, a screening instrument widely used in the U. S. The good news is that they found it can accurately screen for ASD in Mexico. The second report is “Challenges, Coping Strategies and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India.” It includes interviews with local parents, teachers and health care providers in Goa. Not surprisingly, many of the stresses, strains and challenges they describe are achingly similar to those expressed by many U.S. families.

In “Communities in Community Engagement: Lessons Learned from Autism Research in South Africa and South Korea”, the authors describe an approach called community-based participatory research. The aim of the approach is to overcome barriers to research participation. The authors make clear that stigma – an issue prominent in many articles in this series – is a major barrier to research participation in both countries. I found this striking given the tremendous economic and cultural differences between the two countries. Another barrier is a lack of family trust in the research process. Together, these issues underscore the importance of working closely with families in ways that respect their values and culture. Again I was struck with the similarities to research challenges often encountered in economically disadvantaged and ethnic minority communities in the U.S.

The issue’s final article is “A Global Public Health Strategy for Autism Spectrum Disorders,” and its authors include members of Autism Speaks Global Autism Public Health initiative (GAPH). It summarizes GAPH’s strategy for engaging families, advocates, governments and service providers around the world. The goal in each country is to set national priorities for autism research, training and capacity building. The article highlights Albania and Bangladesh. These are just two of more than thirty countries that have relationships with Autism Speaks through its GAPH program. Always, our guiding goal is to help families affected by autism.

As global awareness of autism gains momentum, I look forward to more research advances from other countries. I am also excited to see how research is translating into tangible improvements in the lives of individuals with autism across the globe.

For all the differences between the U.S. and the countries described in this series, I am more struck by the similarities. They remind me that global autism research has the potential to deliver far more benefits here at “home” than we may fully appreciate.

For more blog posts on global autism research, see Autism Speaks and the Movement for Global Mental Health, Collaborating in SouthEast Europe, From the President: An Eye-Opening Visit to Albania and Autism Speaks Being Heard in Europe. Using our Grant Search, you can explore more of the global research we are funding here. This research would not be possible without the support of our families, donors and volunteers. Thank you!

The transition out of the educational system and the process of navigating the new world of adult services can be difficult and complicated.  The study in Pediatrics titled Postsecondary Education and Employment among Youth with an ASD provides important information about the outcomes of individuals with an ASD once they leave the educational system.  We need to continue to evaluate the transition outcomes of all individuals with an ASD, and to develop meaningful transition plans that lead to full lives that may include the opportunity to participate in post-secondary educational programs and to obtain and maintain gainful employment.

The article 'Autistic children fall behind others as adults' was featured in the Press of Atlantic City. You can read the original post here.

One in 3 young adults with autism have no paid job experience, college or technical school nearly seven years after graduating from high school, a study finds. That’s a poorer showing than those with other disabilities, including those who are mentally disabled, the researchers said.

With roughly half a million autistic children reaching adulthood in the next decade, experts say it’s an issue policymakers urgently need to address.

The study was done well before unemployment peaked from the recession. The situation today is tough even for young adults who don’t have such limitations.

Ian Wells, 21, of Allentown, N.J., is autistic and won’t graduate from high school until next year. He is unlikely to attend college because of his autism. He wants a job but has found only unpaid internships and is working part time and unpaid at a fastener factory.

He’s a hard worker, with good mechanical skills, but he has trouble reading and speaking, said his mother, Barbara Wells. She said his difficulties understanding social cues and body language can make other people uncomfortable.

“I’m very afraid” about his prospects for ever finding long-term employment, she said. “It keeps me up at night.”

The study, published online today in Pediatrics, was based on data from 2007-08. It found that within two years of leaving high school, more than half of those with autism had no job experience, college or technical education.

Things improved as they got older. Yet nearly seven years after high school, 35 percent of autistic young adults still had no paid employment or education beyond high school.

Those figures compare with 26 percent of mentally disabled young adults, 7 percent of young adults with speech and language problems, and 3 percent of those with learning disabilities.

Those with autism may fare worse because many also have each of the other disabilities studied.

The researchers analyzed data from a national study of children receiving special-education services, prepared for the U.S. Department of Education. About 2,000 young adults with 1 of 4 types of disabilities were involved, including 500 with autism.

It’s the largest study to date on the topic, and the results “are quite a cause for concern,” said lead author Paul Shattuck, an assistant professor at Washington University’s Brown School of Social Work in St. Louis.

“There is this wave of young children who have been diagnosed with autism who are aging toward adulthood. We’re kind of setting ourselves up for a scary situation if we don’t think about that and how we’re going to help these folks and their families,” Shattuck said.

Government data suggest that 1 in 88 U.S. children have autism, and there’s evidence that the rate is rising.
Within the next 10 years, more than 500,000 children with autism will reach adulthood, said Peter Bell, vice president for programs and services at Autism Speaks, an advocacy group that helped pay for the study.

“It’s a huge, huge issue,” Bell said. “Unfortunately there are many families that really struggle to understand what that transition ultimately entails. … They face the reality of having a child who may potentially not be able to have enough services to keep them busy during the day.”

“It’s only going to get worse,” Bell said.

His own 19-year-old son has autism and is being home-schooled, and Bell has hired therapists to prepare him for jobs and other life skills.

Carol Schall, a special-education policy specialist, said the results confirm smaller studies showing difficulties facing children with autism as they transition into adulthood, and also highlight a need for better job training offered in public schools for special-education students.

She is involved in research at Virginia Commonwealth University investigating whether on-the-job training and teaching social cues to high school students with autism makes them more employable.

Children are taught a range of practical skills and appropriate behavior. “It takes a much higher degree of intensity for them to learn skills” than for other children, she said.

Preliminary results show this training has helped children with autism find and keep jobs, she said.

Autism Speaks offers several resources for adults on the autism spectrum. Here are some links:

Transition Tool Kit
Advancing Futures for Adults with Autism (AFAA)
Autism in the Workplace

Autism Study: 1 In 3 Young Adults With Autism Have Few Job Prospects Years After High School Graduation (Chicago, Ill.)
One in 3 young adults with autism have no paid job experience, college or technical schooling nearly seven years after high school graduation, a study finds. That's a poorer showing than those with other disabilities including those who are mentally disabled, the researchers said. Read more.

Autistic student embraced by Fitchburg teachers and classmates (Fitchburg, Mass.)
A boy's name in the center of a heart. To most, such a drawing is merely normal child's play, something that occurs naturally as kids grow and learn to relate to one another. Read more.

Autism advocate shares life in her 'sensory-based world' (Portland, Ore.)
One of the world's best-known autistic adults shared her fascinating life story and suggestions for improving the lives of those diagnosed with autism before a sellout crowd Sunday. Read more. 

Senator creates Website for children with autism (Sun Sentinel)
Credit state Sen. Jeremy Ring for creating the "Facebook of Autism" — my phrase, not his. He has developed a free Website so families with children affected by chronic behavioral disorders can interact and communicate more effectively with school teachers and professional caregivers about their child's behavior around-the-clock. Read more.

West Avenue School raising autism awareness with fundraising, Autism Walks (Bridgetown, N.J.)
West Avenue School is raising awareness about autism and collecting “Change for a Cause” — finding a cure for the disorder. Read more.