I first started doing talks on autism in 1986 after my first book, "Emergence: Labeled Autistic" was published. Over the last few decades, I have observed that services for children and individuals on the more severe end of the spectrum have greatly improved. Unfortunately, some individuals on the mild Asperger's end of the spectrum may be doing worse today as children, and especially as they become teens and adults. Why is this so? One reason is that we tend to give attention to those individuals who are the most needy. Individuals who are higher functioning, with language and often good academic abilities, can be easily overlooked as not as much "in need" of services in the school system. That's a fallacy, of course, but nevertheless, the perception that Asperger's types can "get by" on their own is still prevalent within our educational system. Educators don't seem to understand the pervasive nature of social skills impairments, generally because no one has to teach a neurotypical person the basics of social thinking and perspective taking. It just happens as a natural part of development.
Second, there are no mandated services for people with ASD as they age out of the public school system. Once a student reaches 21, options for further education and training are severely limited. Those who are not transitioning on to college or employment are left with little help in the way of structured programs. Some options do exist through Vocational Rehabilitation agencies for day programs or job training programs, but quality services are few and far between, and often have long waiting lists. Remember: Asperger's is a relatively new ability, and as the children of yesterday become the adults of tomorrow, agencies are scrambling to catch up with the need for programs and services to address this growing population.
I aso notice another issue that makes the transition to employment and adulthood difficult for people with ASD - one that affects this group as deeply as does the lack of services. The way I see it, many of the challenges within this population arise from the less rigid style of child rearing that is prevalent today. During the 1950s, ALL children were taught manners and social rules and "behaving." Mothers made sure their children learned to say "please" and "thank you," knew how to play with other kids, and understood appropriate and inappropriate behavior. There were hard and fast rules to behavior back then, and consequences to acting out were more strictly enforced. Plus, the majority of mothers didn't work outside the home; they had more hours to spend in raising a child and smoothing out problems. Contrast that with the looser family structures and the watered down emphasis on social niceties that is prevalent in today's society. In many families, both parents work. Proper etiquette is no longer viewed as "essential" education as it once was. Social rules have relaxed and "Miss Manners" has been replaced by a tolerance for individual expression, whether or not that expression is socially appropriate. I don't find many of these changes to be positive, but the scientist within me acknowledges that they are very real forces affecting our population. These shifting, changing social rules (or lack thereof) make it more difficult for most people with ASD to understand the social climate around them and learn to fit in. Many arrive at adulthood without even basic daily living capabilities - even children on the higher functioning end of the spectrum. They can't make a sandwich, write a check, or use public transportation. Functional life skills have been neglected. Why that is, only each individual family can say for sure. But in general, this lack of attention to teaching basic life skills while children are young and growing, is having increasingly negative repercussions on people with ASD. Quirky friends I had in college, who would be diagnosed with Asperger's today, all got and kept decent jobs because they had been taught basic social skills while they were growing up. They might still be quirky, still considered eccentric, or even odd by some, but they could function within society. One Ph.D. I know is underemployed, but has kept full-time jobs with full health benefits his entire life.
In the meat industry where I work, there are older undiagnosed people with Asperger's who have good jobs, with good pay, working as draftsman, engineers, and mechanics. Their early upbringing gave them a foundation of basic skills, so they knew how to act socially, be part of a group, get along with others, etc. Today I see younger individuals with Asperger's who are just as intellectually bright getting fired for being regularly late to work or telling their bosses they won't do something required of their position. When I was little, I was expected to be on time and be ready for school, and I was. Failure to live up to my parents' expectations resulted in a loss of privileges, and my mother was good at making the consequences meaningful enough that it made me behave. As I see it, some of the problems these teenagers and adults exhibit - being constantly defiant and not doing what the boss tells them - goes back to not learning as children that compliance is required in certain situations. They never learned when they were six or eight that sometimes you have to do things that parents want you to do, such as going to church or having good table manners. You may not have liked it, but you still did it.
In light of this shifting sea of social skills and social expectations, how can parents and educators better prepare children to become independent, functioning adults while living in today's society? And what can we do to help the adults with autism or Asperger's who find themselves with adequate technical skills, but are unemployable from a social perspective? We start by recognizing that changes need to be made. We need to be realistic with these individuals and our own roles in shaping their lives. We need to focus on talents, rather than deficiencies. Parents hold primary responsibility in making sure their children learn basic skills that will allow them to function within society as adults. This may sound harsh, but there's just no excuse for children growing into adults who can't do even basic things like set a table, wash their clothes, or handle money. We all make choices in our lives, and choosing to make the time for a child with Asperger's to learn functional skills should be at the top of every parent's priority list. A child's future is at stake - and this should not be a negotiable item. Yet, for some reason, with a growing number of parents, that choice is not being made.
Our public education system also bears responsibility for preparing children to be independent adults. The needs of students with ASD go beyond merely learning academics. They need to be taught to be flexible thinkers, to be social thinkers, to understand group dynamics, and be prepared to transition to adult life - whether or not that includes college or technical school - with functional life skills that neurotypicals learn almost by osmosis. Education of people with ASD goes far beyond book learning. They absolutely require "life learning" also.
Develop Abilities into Employable Skills
Parents, educators, and teachers need to work on using an individual's areas of ability and interest and turning them into skills that other people want and appreciate. When I was eighteen, I talked constantly about cattle chutes. Other people did not want to hear me go on and on about the subject, but there was a very real need for people to design those cattle chutes. The adults in my life turned my obsession into the motivation for me to work hard, get my degree and have a career in the cattle industry. Teenagers with ASD need to learn how to use their abilities to do work that other people value and need. When I was fifteen I took care of nine horses and built many carpentry projects, such as the gate shown in the HBO movie, Temple Grandin. The gate at my aunt's farm was manual and cumbersome. Without even being asked, I designed and built a gate that could be opened from a car. Teenagers must learn work skills that will help them succeed, such as using their artistic ability or writing or musical abilities to do assigned tasks that produce something of value to another. A teenager with good writing skills could practice these work skills by writing a church bulletin or updating a church website, An individual who is good at art could do graphics for a local business or offer to paint with kids at a local community center or hospital.
Temple Grandin "The Way I See It: A Personal Look at Autism & Asperger's" (2011)
