Launching Your Autistic Youth to Successful Adulthood. Katharina Manassis
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When you convince yourself that your youth can make a positive contribution, you are more likely to convince a prospective educator or employer of the same.
Medical and social support services are not always helpful in your struggle. In many jurisdictions, confusion abounds about what services can or should be accessed by autistic youth after high school. As in Robert’s case, eligibility may depend on a single, rather arbitrary characteristic such as IQ with no regard for the individual’s various strengths and weaknesses. You may be left sorting through a maze of agencies and programs to figure out which ones will accept your child, let alone which ones are likely to be effective.
The refusal to talk to parents of youth over a certain age (in Robert’s case, age 18) is also common, and usually justified by citing the youth’s right to privacy. In truth, your son’s or daughter’s consent to your involvement can usually bypass this obstacle, but you may not be informed of this fact. Ask to have your youth sign a consent form so you can communicate with their service providers.
Further guidance on how to navigate various services and service systems is clearly needed. This is an important topic, so we revisit it in several subsequent chapters.
The myth that it’s easy for the high functioning
You would think that higher intelligence and higher functioning would result in an easier transition to adulthood than lower intelligence and lower functioning. If your youth is higher functioning this idea may, unfortunately, represent wishful thinking. Surprisingly, adults with ASD without an intellectual disability are three times more likely to have no daytime activities compared with adults with ASD who have an intellectual disability (Taylor and Seltzer 2011b). Whether this is due to a lack of services for these youth, adult expectations that they find their own activities, exclusion from activities due to stigma, the fact that they are more aware of their own problems than lower-functioning youth (which may be discouraging), or a combination of these factors is unclear. What is abundantly clear is that intelligent youth are not immune to transitional problems, and everyone on the autism spectrum needs support when facing adulthood.
Robert, for example, is verbal and has no intellectual disability, so he might be considered high functioning. However, he loses his words without regular social contact. He is able to do some mainstream schooling with assistance, but cannot work at college level. Because of his IQ, people may expect him to be more competent in his day-to-day activities than he really is. Robert’s father, for example, thought he just needed diligence and motivation to get a job. If your youth is at the higher-functioning end of the autism spectrum, you may have encountered people with this attitude. In fact, Robert required adult accompaniment to manage even his short cooperative education placement. Without it, he might have had difficulty finding the store, knowing what to do with himself during breaks, or responding appropriately to customer questions. Moreover, Robert’s difficulties with social behavior would place him at a great disadvantage when attending interviews for competitive employment.
Even an autistic individual with higher intelligence than Robert can struggle with pursuing educational or vocational opportunities because of impairments in socialization or other aspects of daily functioning. Deficits in planning abilities, impulse control, time management, and other organizational abilities (collectively called “executive functions”) are also common in people on the autism spectrum who are considered high functioning. If your youth has these deficits, it may be hard for them to cope with daily life despite high intelligence. All of these deficits can make the transition to adult life very difficult for autistic individuals who are verbal and do not have an intellectual disability.
What predicts a positive transition to adulthood?
Now that we’ve spelled out transitional problems, let’s start looking at some solutions! As the creation of a positive transition to adulthood is the main topic of this book, only a brief summary of positive predictors is provided here, with more detail in subsequent chapters. Coury and colleagues (2014) reviewed key predictors of autistic youths’ success in obtaining paid employment and in completing post-secondary education. For paid employment after high school, these included:
• paid employment while still in high school
• greater independence with self-care
• greater responsibilities around the house
• greater adaptive behaviors and daily living skills
• parents’ expectations of paid employment and self-sufficiency in adulthood.
Additional predictors found by other authors (Chiang et al. 2013; Roux et al. 2013) include:
• high school graduation
• having older parents
• higher-income households
• higher parental education
• better social and conversational skills
• career counseling in high school.
Predictors of success in post-secondary education in Coury et al.’s (2014) review included:
• high school course work which was on a diploma track (versus courses leading to a more basic high school completion certificate)
• high academic performance
• high scores on college entrance exams
• participation in extracurricular activities
• experience of the daily living skills needed on campus (including socialization and technology use)
• good executive functions
• participation in innovative transitional programs (one example of these is dual enrollment programs where students do some college courses during their final years of high school special education programs).
Comfort around disclosing or not disclosing one’s disability in various contexts, and the ability to advocate for appropriate disability-related accommodations for oneself, are further skills which were considered helpful for college.
Additional predictors found by other authors (Anderson, Carter and Stephenson 2018; Briley, Harden and Tucker-Drob 2014) include:
• positive parental expectations
• early disclosure of disability (allowing early access to supports).
Before you rush out to address all of the factors listed, recognize that research in this area is limited and, for several reasons, results may need to be taken with the proverbial grain of salt. First, the association between a factor (say, high parental income) and an outcome (say, paid employment) may or may not be causal. For example, high family income may result in better transitional supports and therefore better outcomes, or highly competent youth with ASD may require fewer transitional interventions and start earning money quickly, reducing the financial burden to families. Alternatively, a third factor (e.g. high parental education) may account for both high parental income and a better chance of obtaining paid employment for the youth. In short, a factor associated with an outcome does not necessarily cause it.
Second, most studies reviewed are cross-sectional, meaning all factors are measured at one point in time. In order to conclude that one thing leads to another, a longitudinal study which follows large numbers of youth over many years is much more convincing than a cross-sectional one. Unfortunately, longitudinal studies are very expensive, so they are rarely done.
Third, just because a finding holds true for a large number of autistic youth doesn’t mean it will necessarily apply to your son or daughter. Each individual on the autism spectrum is unique, with different strengths, weaknesses, personal history, hopes, fears, and sources of motivation. As a parent, you know about these unique characteristics and can interpret the research evidence in that light.
Nevertheless, there are some common themes among these factors which may make a difference in relation to your child.