As a wave of kids with autism enter the transition stage, strikingly little is known about the best interventions for teens and young adults with the disorder, a new analysis finds.
In a review of more than 4,500 studies on autism interventions published between 1980 and 2011, Vanderbilt University researchers found just 32 focused on therapies for people ages 13 to 30. And among the small number of existing studies, many were poorly done, according to the analysis released this week by the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality.
“Overall, there is very little evidence in all areas of care for adolescents and young adults with autism, and it is urgent that more rigorous studies be developed and conducted,” said Melissa McPheeters, director of Vanderbilt’s Evidence-Based Practice Center and senior author of the report.
Research on a wide range of interventions including medical, behavioral, educational and vocational were included in the review.
Overall, results from the existing literature found few gains from medical interventions for teens and young adults with autism, though antipsychotics were beneficial for reducing some problem behaviors.
There was some evidence to suggest that treatment could boost socialization and educational skills like vocabulary and reading but most studies were small, the analysis found.
When it comes to vocational training — a critical area for transition — just five studies focused on preparing young adults with autism for the work world. While all of the research showed promising results, the Vanderbilt team said that each existing study was flawed, leading to questions about the validity of any conclusions.
“There are growing numbers of adolescents and adults with autism in need of substantial support. Without a stronger evidence base, it is very hard to know which interventions will yield the most meaningful outcomes for individuals with autism and their families,” said Zachary Warren of Vanderbilt who worked on the report.
Hello? Here we are with a 20 year old with Autism and again we are making things up as we go along because there are no services for this age group and there hasn’t been much of anything other than what we can put thogether through school since before puberty (which by the way was very difficult). These “kids” do grow up and continue to need supports people!
This problem exists because you-all in the autism community have been so desperately focused on KIDS and have totally ignored adults like myself who have lived with the condition for decades. It’s about time you got around to us. Perhaps we have some wisdom we can share…and for sure we need more attention and support than we have been getting. From a 55 year old female with Aspergers…
This is an area that deserves some extensive research. Huge numbers of young adults with autism can’t be abandoned after leaving the school system. Every effort needs to be made to enable them to be contributing members of society. Fact based, systematic research must support our efforts in this area.
I strongly encourage raising awareness on this issue. Many of the kids become ready to adapt to society and learn to become more in control of their sensory issues or gain grasp of their body issues related to puberty around the age of 18, yet we have very little programs to assist they become of age. There needs to be more options for those who are unable to attend college yet want to continue their learning experiences, whether it be educational or vocational.
As a person with Asperger’s, I have had to run the gamut of personal attacks ranging from those that thought I was gay, to those that thought I was selfish, to those that thought I came off as being obnoxious; to accusations of immaturity, and other attacks that remind me of the ones that Galileo had to endure. Now, the proof is in the pudding with this study
Job focus alone just wont cut it – BTW. The whole ‘any job is a good job’ leitmotief applys to us even less than it does to the mainstream population. We need to admit that for a goodly % of us, a work life just isn’t possible. There need to be alternative options – learning a trade, learning a craft, leisure skill building. We also need shelters and crisis centers aimed at Autistic folk – we aren’t safe in standard shelters.
I’ve been out of the standard school system for about almost 5 years now, and all the stuff I hear about on the news, and through the grape vine is focused on the Kids with Autism. I’ve been very precaution with such groups like Autism Speaks, and very much try to realize that all the research they worked on, was focusing on the “future of society”… instead of the now. This study is just the proof of it.
Of course there is little know or understood about this.
The usual M.O. @ the State level is “tough luck, you are on your own…” after age 21.
90% of Autistic adults are unemployed.
State VR services for the disabled are inadequate to even deal with anyone with Autism.
Even a 54 year-old Autistic like me who is labeled “high functioning” just sits around all day most days.
I do have a Bachelor of Science Degree in Electronic Engineering Technology from Wentworth Institute.
I did have occasional employment since 1978, but mostly been unemployed & really never became independent in adulthood.
Interventions?
Supports?
All I have is my younger non-disabled 50 year-old brother for “support”.
This is what the “Tea Party” wants.
Their motto is “If you are disabled…To Hell with you!”.
We are parents of a severely autistic young adult. We tried about everything possible, and try to keep informed on the latest research. They could have saved the research funds and ask us. There is virtually nothing for autistic adults. I recently watched a video from Charlie Rose’s Brain II series about autism with a panel of world experts outlining the latest findings explaining causes for autism, all new from the last 5 years. Yes … just 5 years. Any doctor we know is totally outdated as of the medical aspects of autism, if at all, and some not very interested. And there are no treatments. So how could they be of help to the increasing autistic population? It is a real crisis and no possible sensible support will come from the present generation of professionals. We are virtually on our own for the foreseeable future.
There are critical needs for adults with autism across a wide range of issues and precious little in the way of infrastructure or expertise anywhere. Autism advocacy and intervention has been focused on the first twenty years of life…there are fifty plus more after that folks need to focus on! We need to broaden the conversation. My 2c below:
Jobs and Training – Existing providers for the broad DD community are slowly trying to adapt to serve people with autism but in many cases it’s an apples and oranges proposition. Program designs don’t fit the needs of people with ASD’s. Many w/ASD’s get booted out of established programs due to behavior issues. We need specialized solutions, not Down Syndrome or ID focused retrofits. Here are two specialized programs that work:
http://www.rosesforautism.com/
http://www.aspiritech.org/
Medical Issues – What options for medical care exist post pediatrician (developmental or regular) or child neurologist? Uhhh…not much. Good luck finding an internist or practice who can appropriately treat patients with ASD’s or anybody that has a focus on adults with ASD (many of whom are Medicaid not private insurance). They don’t exist…except for (to my knowledge) this new initiative: http://www.checksutterfirst.org/neuro/autism/stand.html
Housing – Again, not much there yet but tons of folks working on the issue. However, a huge issue and structural impedimant to innovation exists. Many traditonal disability advocates and some in the ASD community believe that what’s appropriate for the broad mixed DD and ID community re independent living choices works for everyone with autism. They are wrong. In more than a few cases, their notion of “independent” or “community based” living is totally inappropriate and unsafe for some with ASDs. Codifying ideologically based (and incorrect) interpretation of the Olmstead decision with State regulations that eliminate public funding for any small campus, cluster of residences, or intentional community will result in fewer and less safe choices for many. Broad DD advocates need educating!
There are many other issues to work on…quality of life, recreation, safety…geriatric issues!…
Why is this such a surprise I wonder? Did people think that the kids were not going to be adults one day? Once my Asperger son got out of high school, the only resources we could get help from was with Vocational Rehab. This still does not help him with being able to live on his own and be independent. They suggest all the time a group home. With all his phobias, I just don’t see that happening. And not being able to get a decent paying job to live on his own means he still lives at home with mom and dad and that obviously can’t be a solution forever. I’m worried to death what will happen to him when we are gone. We try to get him to realize that he must advocate for himself, but who will be out there to help him do this once we are gone? There are no resources to speak of. It’s a very sad and scary situation.
I have a feeling their research database search did not include 2 generations of rehabilitation science. Beware of evidence-based literature reviews that rely on computer searches. People HAVE been studying autism outcomes for years; I can remember working with individuals with HFA and Aspergers back in the ’70s, in normal work environments with accommodations and supports. There are dozens of books, articles and projects. Plenty is known, and you will find what you need if you stop expecting other people to provide for you and get out there, read, intereact and explore.
I’m a mom of a son with autism that is becoming a teen! There are really no services out here for teens and adults. We have 2 wing it. That’s a shame! There is a real need for support services out here besides vocational rehabilitation!
It is so frustrating to see these types of articles expressing how little is known within the “expert” field about interventions. Intervention happens when the person is young, certainly before teen years, services and programs are needed after that, not necessarily interventions. The senior author of the report, Melissa McPheeters, states the lack of evidence of care is the problem and we need more studies to find out that there is a lack of services for teens and adults. Isn’t that a bit crazy , have another study to find out there is a lack of services for those teens and adults on the spectrum. This is NOT a ” brand new problem” recently found by a new analysis, and it certainly doesn’t need to be studied further. Looking at the comments here alone is all anybody would need to understand this is has been a problem for a very long time. More studies, funded by who??? are wasting precious time and money in directing any possible resource away from providing the actual service that someone needs or wants. For those who are on the spectrum or who live in the real ,every day world, within autism or any special needs condition, we need more services for ourselves, our teens and adult children. If a researcher is looking for more answers on how to help, you can find more accurate and realistic ideas on how to help the aging autistic population by talking to the only real experts , being those adults on the spectrum or their family members. This research will supply you with a quick and clear picture on ideas to provide the help needed in making a transition from the child to the teen and adults on the autism spectrum.