Problems are only opportunities in work clothes. ~Henry J. Kaiser, American industrialist, father of modern American shipbuilding.
Asperger’s Disorder was added to the American Psychiatric Association’s Diagnostic and Statistical Manual in 1994 as a separate condition from autism.
Given that 20 years have elapsed since that date, there are many adults with high functioning autism and Aspergers who never received early intervention services. So how are they doing? If they never received early intervention, they have probably developed their own strategies for coping with the confusing neurotypical culture.
But they may still be struggling, and they could benefit from researched interventions that have been found helpful to enhance careers and relationships. Currently, there is little research about effective treatments for adults with Aspergers and high functioning autism.
- To discuss the general landscape of Aspergers in Adults treatments.
- To briefly outline my current thinking about how to best serve Aspergers/high functioning autistic adults as a therapist/teacher or other professional.
The Current Landscape of Researched Treatment Interventions for Adults with Asperger’s/HFA (High Functioning Autism)
I remember flying, as a child, in a one engine Cessna airplane from remote rain forest villages to the populated city of Boa Vista, Roraima, Brazil. Miles out from the main hub of the city, I could see small settlements/villages. As the plan got close to the city, there were more and more closely packed houses, as well as roads, hospitals, schools, and other big buildings.
A Bird’s Eye View of Research Islands
Right now, if we think about flying above the landscape of current research as a metaphor, I don’t see a city built with well documented and well researched ideas and strategies for helping adults with Aspergers live rich and fulfilling lives. Rather, I see isolated oases around the globe of good ideas needing further development.
Thank you, Kathleen Tehrani, founder of Autism Brainstorm community on Google Plus, for suggesting Dr. Miller, Relationship Development Intervention, and Brian King’s site, as three promising places to look.
The Miller Method.
Dr. Miller’s site, called the Miller Method, looks helpful for interventions with children, but I didn’t see much for adults.
Brian King, himself diagnosed with Aspergers, and a social worker and coach, agreed that there is very little research resources of interventions to help with communication, independent living, relationships, and work. Per Brian, “there’s very little about adults. All I’ve ever found are the first person accounts of what adults have discovered for themselves.” Like me, Brian recommends Dr. Valerie Gaus’s book, Cognitive-Behavioral Therapy for Adult Asperger Syndrome. I’ve found her case conceptualization framework for working with people extremely helpful. However, her chapters about specific interventions to help adults with neurological differences seemed a bit thin.
Michelle Garcia Winner, at Social Thinking has a lot of building block ideas that can help neurotypicals and autistics/Aspies alike understand how communication works in a step by step fashion. Rather than teaching specific social skills, this method seeks to help people understand the HOW and WHY behind communication versus than “just do this skill.”
Richard Kriner, CRC, LPC, PBSF, Autism Research Coordinator at VA Department for Aging and Rehabilitative Services, shared some helpful resources.
Per Richard, this model has more of a focus on assessment and comprehensive planning but they do a good job of referring to evidence based strategies that can be used across each level of intervention.
Mr. Kriner also recommended the Incredible 5 Point Scale by Buron and Curtis to be helpful for work with adults, even though the book is written for younger students.
[By the way, I have found, as an adult, that some of the best books written on complex subjects are children’s books. Those authors can often explain complicated things in language I can understand!
Dr. Standifer’s site.
Mr. Kriner pointed out that Dr. Standifer hosts a website through MU’s Disability Policy & Studies that includes some good resources including a couple on demand webcast that give an overview of different social skills interventions for adults with autism (i.e. Pivotal Response Treatment and Ziggurat Model).
Upcoming Research from the nonPareil Institute
Vicki L Hill, CFO for the nonPareil.Institute, a non-profit technology company, shared that they have research in the works for career interventions with medium to high functioning autism spectrum adults.
What is significant is that we do not “teach” social skills. Instead, we teach technical skills, teamwork, and workforce skills. By focusing adults with ASD on these skills and creating opportunities to work in groups where their peers also have ASD, they have the opportunity to PRACTICE social skills in a safe environment. And what we are finding is that the natural friendships and peer working situations create the experiences that they need to go out into the larger world where not everyone has ASD.
In my opinion, we neurotypicals are way over-focused on “inclusion” – getting the folks with ASD out around folks without ASD so they can “learn” from them. But they don’t learn from them; they have a problem with picking up on social cues; that is the nature of the disorder. Putting them together and letting them learn from one another, and THEN take on the bigger world, is far more effective.
The Truth Is, There is Not A Lot of Pure Researched Interventions for Autistics and Aspergians.
Self Help, by Aspies, for Aspies.
It occurred to me recently, that practically everything I know about autism, has been learnt through a) my own research. b) self analysis and writing blog posts. c) listening to other peoples experiences of having autism.
I have also learnt a lot over the past 5 years, by observing many autistic people right across the spectrum in my work as a tutor to people with autism.
So what have I learnt about autism through my doctor (GP), psychologist and psychiatrist?
Well, nothing really!
Have I ever been offered access to any specialist services for adults with High functioning autism or Aspergers syndrome? No, nothing specific has ever been offered. At no point since my diagnosis five years ago, has any medical professional offered me any autism related advice, information or support.
In many ways, I agree. Aspies have taught me some of my most valuable lessons about the autism spectrum. There is such power in community.
This community excites me. It “provides a platform for individuals on the spectrum, advocates and experts to share with one another as a collaborative community. This provides the opportunity for all of these groups to empower one another….helping to improve life for people on the autism spectrum.” This community is a Google plus extension of http://autismbrainstorm.org/. If researchers, scholars, and practitioners both on and off the spectrum continue to dialogue in forums like these, a lot of good will come of it.
How Can Professionals Be More Effective with Aspergers in Adults Treatments?
Keep an eye out for recent research developments.
Check Google Scholar. I’ve set up a Google scholar alert for adults with high functioning autism and adults with Aspergers so I can stay current.
Subscribe to as many autism writers’ blogs as you can. Read what they are saying about life from their standpoint. I’ve been humbled, inspired, and educated by so many great Aspies around the web.
I will often ask for input from other Aspies on Twitter, Google Plus, Facebook, and LinkedIn. They’re not shy about letting me know their opinions.
Remember that treatment is not about making an Aspie into a neurotypical.
John Elder Robison’s article, What is Neurodiversity, outlines some wonderful suggestions for helping professionals:
- Work to relieve the burden of neurological disability without altering the essence of the person.
- Advocate for autistics and Aspies to society at large, helping institutions (teachers, schools, parks, work places) understand the need to learn from and accommodate for autistics and Aspies.
- Reframe research efforts into looking for treatments/therapies to remediate the worst effects of neurological difference, versus “searching for a cure.” It (autism) is a difference, not a disease!
Here’s a final quote from Mr. Robison:
I believe acceptance of neurodiversity backed up by support for solid research into how we can be our best (least disabled, most productive, etc) is the most positive position those of us who are different can take. I celebrate all the people who fight for the rights of people who are different, and I look forward to the further fruits of those efforts.
These are some of my thoughts about the current state of research into effective treatments for adults with high functioning autism. What are yours?
P.S. Please share this article, and I’d love to hear other reactions and thoughts on this subject!
Image credit: shotsstudio / 123RF Stock Photo