Читать книгу Launching Your Autistic Youth to Successful Adulthood - Katharina Manassis - Страница 9

When interviewed, parents of autistic, transition-aged youth reported a mixture of hopes and worries about their children (Chen, Cohn and Orsmond 2018). As you may have experienced, uncertainty about the future, lack of guidance about how to help your youth, disruption in your youth’s vocational or educational progress after high school, or sibling symptoms of emotional or behavioral problems can all be worrisome (Taylor and DaWalt 2017; Walton 2016).

Beyond the studies, however, are the stories of individual families like yours. There are families like Robert’s where parents argue about how to help the autistic youth. There are single-parent families like my own who are desperate for a break after years of doing two jobs: a paid job to earn a living, and an unpaid one supporting and nurturing the development of a child with special needs. There are other families where parents are caregivers to their own aging parents at the very time when their autistic youth needs them the most.

Long-term concerns may also be looming in the back of your mind. The one I have heard most in the support group I attend is “What will happen to him/her when I die?” When our children reach adulthood, our own mortality comes into stark focus but this worry is magnified in the case of autistic youth. You may wonder, “Will my daughter be one of the lucky few who manages to be steadily employed and live independently, or will long-term financial and residential support be needed?” or “How will my son cope without me, when he considers me his best friend?” or “Is it fair to ask a sibling to help look after my child down the road?” Part 3 of this book addresses some of these long-term considerations.

Figure 1.1 Developmental progress by age

If you experience a grief reaction as you recognize that your child may never reach the level of independence you had hoped for, you are not alone. Many parents of transition-aged youth on the autism spectrum have this experience. During childhood and adolescence, well-meaning professionals sometimes reassure us with the statement “Their development may still catch up.” Unfortunately, in most cases “developmental catch-up” is a myth. Figure 1.1 compares developmental progress in an area affected by autism (say, social skills) in an autistic child versus a neurotypical child. As a result of good supports, the autistic child is steadily improving in this area, but the rate of improvement is slower than average. As you can see, when a child develops more slowly than the average in a particular area, the gap between the child and same-aged peers widens over time. It does not decrease. By the end of high school, the fact that the child will never catch up to peers in some areas of development becomes painfully obvious.

There are occasional exceptions. For example, some highly intelligent youth are laser-focused on succeeding in a particular field, and therefore put great effort into remediating their autism-related deficits in independence, social skills, and so on. Unfortunately, they are uncommon.

As your autistic youth becomes an adult, you may have to face the fact that certain disabilities will persist, and this realization can be hard. It is even harder when you blame yourself or others, so try to avoid looking back and instead focus on what is still possible. Pay attention to your youth’s abilities, not just the disabilities. This is helpful not only for your sanity but also when filling out applications for further schooling or employment. 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.