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Evidence weak that vocational programs help young adults with autism
August 28th, 2012
09:11 AM ET

Evidence weak that vocational programs help young adults with autism

Google "vocational interventions for young adults with autism" and you'll get more than 200,000 results. But a new study finds there's little science to backup the efficacy of current methods used to help young adults with these neurodevelopmental disorders segue into the workforce.

"There's startlingly little information on the best ways to help adolescents and adults with autism achieve their maximum potential in the workplace and across the board," says lead study author Julie Lounds Taylor.

Taylor and her colleagues at Vanderbilt University sifted through more than 4,500 studies that made reference to Autism Spectrum Disorders (ASD) and therapies and found only 32 studies published between January 1980 and December 2011 that met their basic criteria, including having at least 20 study participants between the ages of 13 and 30.

But some studies were in children with autism; a lot of them were descriptive and didn't really test an intervention; and a fair number weren't really studies at all but commentaries, according to Taylor.

In the end, the researchers found only five studies that focused on vocational interventions. While this handful of studies looked at certain on-the-job programs designed to support young adults with autism and suggest these "interventions" can improve quality of life and reduce symptoms of autism, the study authors concluded, "all studies were of poor quality."

They say these studies had serious flaws including the randomization or comparison groups, which makes it difficult to draw any conclusions.  Lack of follow-up and the fact that most studies were small also contributed to the researchers' deeming the quality of the research as poor.  The study was published Monday in the medical journal Pediatrics.

Geraldine Dawson, chief science officer for the advocacy group Autism Speaks, says she finds it remarkable that only five studies that address vocation skills were published in the last three decades and all were of poor quality.

"There is a tremendous knowledge gap regarding how to help young people with autism be successful in the work environment," Dawson says.

According to the latest CDC estimates, 1 in 88 children in the United States has some form of autism.  For boys the incidence may be as high as 1 in 54. The CDC bases these latest estimates by looking at data on 8-year old children from health and special education records of living in 14 areas of the United States - part of the ADDM network – during 2008.  These 14 areas include 8% of the American population of 8-year-old children, according to the CDC.  Health officials use this age as a benchmark because by age 8, most children with autism should be identified as receiving services.

The education system is the primary source of treatment for most families, as the government is mandated to provide an education for all children - including children with disabilities.

However, once children with autism turn 21, they age out of the education system and often have nowhere to go. Parents are acutely aware of this, and what will happen to these children as they and their parents age is a huge concern.

When you consider the latest CDC prevalence data, those 1 in 88 children who were 8-year olds in 2008 are now on the cusp of adolescence.  Even using 2002 CDC estimates, when the estimate for autism was believed to be one in about 150 children, that would mean there are 1 in 150 18-year olds with autism living in the United States today.

In January 2011, Lee Grossman, then president of the Autism Society, told CNN that these young people are generally unemployed, living in poverty. "Their ongoing needs are not being addressed," he said. (Grossman left the organization after nearly 20 years six months later.)

Given these statistics, finding ways to help young adults support themselves and continue to thrive becomes even more urgent. Taylor thinks this new research could be a possible wake-up call.

She says the studies that have been done and their lack of evidence show that "we're on the front-end of understanding autism and adulthood."

As an assistant professor of pediatrics and special education at Vanderbilt University in Nashville, Tennessee, Taylor's research focuses on how adolescents transition into adulthood.  She believes just as parents have been a driving force in pushing for more research in the cause of autism, they too can influence where the field moves in the future.

"We need more funding to do research," she says.  That research would help determine which vocational programs will work for which person with autism given the range of the spectrum, a range that spans "someone who can go to college to someone who has severe intellectual disabilities."

Taylor is hopeful that the research landscape will change and that there will be far more useful data collected in the coming decade compared to the last three.  Autism Speaks as well as the National Institutes of Health have already launched several studies focused on improving quality of life for adults with autism.


soundoff (27 Responses)
  1. Jeremy

    I want to say that it has worked for me. I have Aspergers and I went through a DVR( Division of Voc. Rehab) 16 week job prep. program with resume building and preparedness training. I than learned the skills to effectively apply for jobs and I got hired through a temp agency and have been employed for nearly 2 years as of date.

    August 28, 2012 at 10:32 | Report abuse | Reply
  2. Autistic

    When you're told that you're broken when you're not then no way are you going to even feel like working. Autistic.

    August 28, 2012 at 13:06 | Report abuse | Reply
    • chaoticidealism

      Except we're not broken. That's a load of crap, and you know it. What we're facing is a bunch of prejudice and a bunch of stereotypes that say autistics haven't got anything to contribute, that we can't possibly have any useful skills or ever be able to provide for ourselves. Yeah, some of us really do have a hard time working; but I believe that most of us can work, if only in supported employment. If they'd just drop the pity-and-fear crap and let us in, they'd see that.

      August 28, 2012 at 15:53 | Report abuse |
    • Shellie

      What's one person's broken may be another person's fixed. My heart goes out to parents and family helping their loved ones with Autism.

      August 29, 2012 at 16:09 | Report abuse |
    • Shellie

      ...repaired.

      August 29, 2012 at 16:12 | Report abuse |
  3. chaoticidealism

    Yeah, you know why there's so little research about how to help us get jobs? Because everybody's using the research money to poke and prod at our DNA and try to figure out how to stop any more people like us from existing. That sucks. Theory is all well and good, but they need to research how to help real, live autistic people. What I want is to be a part of my community. I want autistic people to be able to go to school, to get jobs, to contribute our own perspectives, talents, and ideas. Just because we're disabled doesn't mean we're walking tragedies or lost causes. We're just different, that's all. If they would just spend a little more money on practical, everyday-life research, we might not have to fight so hard to get access to all the things that everybody else seems to take for granted.

    August 28, 2012 at 15:51 | Report abuse | Reply
  4. Christina

    Of course there aren't many studies! They're looking for studies of the wrong age group. most people with autism and other developmental disabilities stay in the school system until 21 years of age and don't sign up for DVR and other community-based vocational programs until after graduation. look at the 21-30 age group if you want to find valid studies on this subject. Or if you are trying to find studies on school-based vocational programs, then make that more clear in your article.

    August 28, 2012 at 15:54 | Report abuse | Reply
  5. Sara Mae

    How can society work to better meet the needs of the aging autisic population? In my opinion, this is one of the biggest challenges facing the United States today. Autism is often viewed as a "childhood disorder," but it is a life-long disability, and families across America are struggling to find a place in society for their aging autistic family members.

    My nineteen-year-old sister is on the low-functioning end of the autism spectrum, and will soon be aging out of the education system in New York State. It was our hope that she could live in a group home, but there is simply not enough funding in New York State– there is currently a spending freeze on the creation of new group homes. Additionally, Day Habs are filled to capacity, and there are virtually no employment opportunities for low-functioning individuals like my sister. Both of my parents currently work full-time, but it's looking like someone will need to quit their job in order to stay home with my sister when she ages out of the school system. I am concerned about how we will be able to keep her happy, and make sure that her days are structured and full of stimulating and enjoyable activities. My family is not alone– thousands of families in the United States are struggling with this transition to adulthood.

    In the article, Taylor calls for funding in order to conduct more research. I would argue that funding is urgently needed in other areas– we need to open more group homes, provide more Day Hab programs, and create social enterprises to employ individuals across the autism spectrum.

    August 28, 2012 at 16:04 | Report abuse | Reply
    • anonymous

      There are a lot of people currently unemployed and looking for work. Perhaps you could find one of these people who are highly motivated and good with people and provide some training for him or her so both parents could continue working. Or, like with nanny's, perhaps there is another autistic adult needing care with whom you could team up with their family and share a care provider. What you want to avoid is having a parent feel resentful he or she had to give up their job.

      August 28, 2012 at 16:48 | Report abuse |
  6. drericlarsson

    This study makes ludicrous conclusions. Thousands of young adults have benefited from community-based supported work options since the 1980's. It is clearly and transparently obvious to their service providers, families, and themselves that they have earned income rather than soaked up welfare, that they have made real friendships, and accessed the community in ways that were unheard of in the 1970's. The impact has been important and significant. To hold this kind of extensive program up to pristine research standards, and then conclude that the evidence is weak, calls into question either the competence or the motives of the academic researchers. Their conclusions are a slap in the face of so many who have worked so hard to do so much good.

    August 28, 2012 at 17:35 | Report abuse | Reply
  7. Doc Rick

    I do believe that working and vocations are beneficial for individuals with ASD. Moreover, the cause of naturally occurring autism is not known, however the spike in autism that we have seen in the last twenty years is coming from men carrying cell phones in the immediate proximity of their reproductive cells. In a 2009 study, RF energy (aka microwave radiation) from mobile phones was established to cause DNA fragmentation in men's reproductive cells. That DNA fragmentation is causing men to pass autism to their babies. The way men carry their cell phones is why they are passing on autism at 4 times the rate of women. See the science at http://www.WhyAutismHappens.com

    Women, if you want healthy children, have your partner keep his cell phone away from his private area for at least 30 days before you try. Those 30 days can make the difference of a lifetime.

    August 28, 2012 at 21:32 | Report abuse | Reply
    • Mother of Autistic Adult

      Doc Rick, cell phones do not cause autism..seriously this comment made me laugh..pls do your research at an adult level, not the internet. You will learn much more and have a better understanding.

      August 30, 2012 at 00:58 | Report abuse |
    • BigDebby

      Huh? Was this meant to be funny?

      August 30, 2012 at 07:37 | Report abuse |
  8. rhymerchick

    Reblogged this on Raising Rob and commented:
    We are currently searching for interventions that can help Rob keep a job. We have heard that working with a job coach is one such intervention; but Rob has to be willing to work with a job coach; and then he has to be willing to do what the job coach suggests. Both have been issues so far. Rob steadfastly refuses to identify as AS at work, which both job coaches we have employed have suggested that he do. He is also resisting identifying as AS at school.

    August 28, 2012 at 21:41 | Report abuse | Reply
  9. Dee McVicker

    We are seeing lots of potential for young adults on the spectrum in the fields of computer animation and post production. In fact, as I write this several students at Exceptional Minds, a working studio and vocational school for young adults on the spectrum near Hollywood, are about to see their name on the big screen for the first time as a result of their work on the movie Lawless (coming out in theaters tomorrow). These are young adults who seem to have a knack for running complex computer programs; they're talented, they're dedicated, and they are on the spectrum. You can see their work for yourself. Just Google Exceptional Minds and take a look.

    August 28, 2012 at 22:00 | Report abuse | Reply
  10. talent search

    It is so unfortunate that as autistic children move through our educational systems (particularly in schools and districts that do not fully include them in age-appropriate instructional activities), their "interventions" are focused on compliance and conformity while their talents are frequently ignored. It is not unusual for autistic individuals to possess the same academic potential as non-autistic individuals. Because of their ability to focus intensely on a topic of high interest, some autistic people are unusually talented in art or music, or possess strong abilities in math or history. However, when these children are corralled into self-contained "special" programs, most of which include little academic rigor, their talents, their acquisition of knowledge, and even their basic educational needs (such as literacy, social studies, and math), are thrown into a dumpster. By the time these students reach age 21, vocational training may be their only option. Social needs, employability, and career development must be addressed throughout one's lifetime, and these can more effectively be addressed when the person's talents, abilities, and intelligence are respected.

    August 28, 2012 at 22:13 | Report abuse | Reply
    • Fred Sanford

      Many autistic kids do not have talents to speak of. The severe cases have huge maturity, emotional and communications issues as well as retardation. "Age appropriate" will not work for these kids.

      August 29, 2012 at 09:40 | Report abuse |
    • chaoticidealism

      @Fred–They may not have unusual talents (splinter skills/savant syndrome are only 10% of the spectrum anyway), but everyone has strengths, things they're better at than other things. For autistic kids, and disabled kids in general, capitalizing on their strengths is very important. Because by definition disabled people have extreme weaknesses, often times therapy focuses on those weaknesses, trying to bring them up to normal levels, and in the process often completely ignore the person's strengths. That's a mistake, because those strengths can be used to compensate for weaknesses, and often to obtain employment or improve independent-living skills.

      August 29, 2012 at 13:13 | Report abuse |
  11. Tammy

    I'd be interested in participating in one of these studies.My son is 21. He is Asperger's and can not find a starter job. He's going to college and it is a constant struggle and challenge for him.

    August 28, 2012 at 22:18 | Report abuse | Reply
  12. Fred Sanford

    I can honestly say that it doe snot work for the majority. The severe autistic kids, the ones with emotional and communication issues, often are not employable ever. My son is in this category, yet the government spends the price of 20 kids to educate him. He will never behave, will always have outbursts and will never have a job. But the taxpayer has to pay big $$ to "educate" him. All it is really is a very expensive daycare.

    August 29, 2012 at 09:38 | Report abuse | Reply
    • chaoticidealism

      Fred, please don't give up on your son. Don't listen to those people who are saying that he's not as good as other kids. I know it's discouraging, but "never" this and "never" that is just going to make you feel like it's useless for him to try to learn. The fact is that everybody learns, even severely autistic kids. Okay, so maybe he can't work; but he can learn to do things for himself. People learn throughout their lives. The majority of autistic people will be able to live on their own as adults, but even those who can't will benefit from the steadily increasing protection on the rights of disabled people everywhere. The things I had to deal with as a child–abusive "treatment", lack of access to education and therapy, and similar–are becoming rarer and more likely to be prosecuted when they occur. There are a lot of people fighting for the rights of people like your son to live peacefully as an equal in our society. Just being different, being disabled, shouldn't make him a second-class citizen. Please don't give up.

      August 29, 2012 at 13:10 | Report abuse |
  13. achievehealth

    The reason there aren't sufficient studies on the cause of autism is because the government would have to admit that allowing Bio-tech companies to mess with the DNA of our food and the lack of regulation of chemicals in our personal care products are responsible for most neurological disorders we face today. I have a holistic doctor who has successfully treated and mainstreamed autistic children by using chileation therapy and having the child eliminate as many toxins as possible from their daily routines. I am in the process of trying to fund a group that will pay for holistic treatments for autistic children and provide them with assistance with purchasing organic food items and chemical free personal care items. The average woman puts 515 chemicals into her skin on a daily basis just from the use of shampoos, soaps, perfumes, makeup and lotions. Our bodies weren't designed to be able to fight off this many toxins and this doesn't even include toxins from heavy metals, vaccines, cell phones, and other environmental toxins that we cannot control. We all have to start looking at everything we put into our bodies as either feul or poison and it doesn't take a long look at the ingredients of most of our diets and personal care items to figure out that we are putting too much poison into our systems.

    August 29, 2012 at 16:06 | Report abuse | Reply
  14. BigDebby

    Autism is a very wide spectrum. Many are employable; many not. (retired Sp Ed teacher of HS students ages 14-21 with significant cognitive & adaptive skills deficits, including Autism)

    August 30, 2012 at 07:43 | Report abuse | Reply
  15. ASD and Employed

    High-functioning autistic and employed here. I went through pretty much all of the early intervention programs the state of NY offered in the 80s and 90s, started getting financial assistance through SSI & SSD through 2011, and have my BA in English Literature. My own perseverance and a very talented caseworker allowed me to keep services for a decade.

    Like many others, the state of NY's approach to adult disability-related services is a one-size-fits-all-approach that is partially effective at best. Although I gained much, including the ability to drive, the services were partially effective at best. I had to learn what I needed on my own, such as how to read body language and make friends (ABA, social videos and social stories weren't available to me in the 90s); not everyone on the autism spectrum is able to do so. After 4 years of running an autism support group for adults, it is my firm belief that most people on the spectrum want to make friends, but are so severely punished for our social missteps that we lose our confidence and give up our place in the world. This is a tragedy that can and must be avoided. Losing out on the impressive talents, capabilities and friendship of 1 out of 88 people in the U.S. is far too many!

    September 10, 2012 at 14:34 | Report abuse | Reply
  16. Hemet Arthritis Doctor

    II do hope that they start understanding and finding a cure for autism. For them to be given a chance to a normal life and explore their potential. Where was this study done?

    September 13, 2012 at 00:43 | Report abuse | Reply
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    September 14, 2012 at 06:32 | Report abuse | Reply
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