on the other hand, can use the time your son or daughter spends with others to pursue your own interests, enjoy time with your partner, or just fit in home maintenance and other necessary activities. When your youth returns, you will be less stressed than before and ready to deal with their needs again, whatever they may be. Parent–child relationships are often less strained when they are not continuous 24 hours a day.
• When setting goals, start with one or two rather than half a dozen. Every goal requires some deviation from daily routine, which requires a great deal of effort for autistic individuals. Tackling more than two goals at a time is usually overwhelming for them.
• It may be overwhelming for you too! As a parent, expect to be coach as well as cheerleader when it comes to new goals. Neurotypical young adults often do better with encouragement alone (i.e. cheerleading) as they may find specific suggestions intrusive or condescending. Young adults on the autism spectrum, however, may need specific guidance (i.e. coaching) even if their intelligence is in the normal range. Their fascination with objects or fantasies rather than people limits the ability to learn by observation. For example, when learning to bake a neurotypical youth may automatically grease the cookie sheet before putting dough on it based on observing a parent do this. By contrast, an autistic youth may need specific instructions to do so. Many apparently simple tasks must follow this model: spell out what is needed step by step, then patiently practice it together before expecting the young person to perform it independently. Most of us are too busy to engage in this process more than once or twice a day, hence the need to limit the number of concurrent goals.
Why not turn this over to a professional?
By the time your autistic youth approaches adulthood, you may be nearing exhaustion as a parent. It is tempting to turn further progress over to professionals. These might include educators, educational consultants, employment counselors, physicians, psychologists, social workers with autism expertise, or nurse practitioners focused on this population. This may make sense if: the relationship with your son or daughter is strained, especially when you encourage them to try something new; you are overwhelmed by the prospect of more work with them; they consistently withdraw when you try to set goals. In these situations, a professional may be able to engage with the young person on a more positive note than you can, eliciting at least some cooperation. A professional may also be able to help “sort the forest from the trees” and identify what really matters to the young person and to your family, both short term and long term.
Unfortunately, not everyone can afford to hire a professional, and some professionals are more helpful or more experienced with ASD than others. Even the best professionals are often limited in the scope of their activities. Commonly, for example, a professional may provide a consultation on the young person’s problems and make recommendations for addressing them, but without follow-up to ensure that the recommendations are implemented or are even feasible. Some professionals also limit their involvement to regular business hours, which is not helpful when young people who rely on them run into difficulty on weekends or after hours. Some autistic youth also respond better to familiar adults like parents than to unfamiliar adults, or take months before warming up to a new professional. For all of these reasons, parents who have a good relationship with their autistic youth and at least some energy to continue working with them should probably do so. Professionals can help from time to time but, to quote an old adage, ultimately “blood is thicker than water.”
Resistance and unrealistic goals
Many young people on the autism spectrum report having no particular goals. Though it is possible that this is true, more often the statements “I have no goals” or “Things are fine as they are” represent a fear of change. All but the most daring people fear diving into the unknown. People on the autism spectrum, however, are particularly attached to stable routines, making them more resistant to change than most. There is some debate as to whether this represents a personality style to be accommodated or an aspect of autism that requires medical or behavioral treatment. By young adulthood, it is usually a moot point: unlike children, young adults will not consent to treating something unless they consider it an illness or significant problem.
You will likely have to work around the young person’s fear of change. You may already have found ways of doing this when your child was younger. These are worth revisiting. Recognize, however, that the challenges of young adulthood may seem more daunting to your son or daughter than anything faced in the past. It is one thing to start a new grade and have to deal with new teachers and new courses; it is quite another to start a new job where the environment, the schedule, and the expectations may be changing as well as the people and the tasks involved.
Some ways of approaching this problem have already been mentioned: starting with something the young person values, breaking goals into small steps, tackling one or two goals at a time, coaching, and perhaps involving professionals. In addition, reviewing past successes with your youth may be helpful. Anxious youth, whether autistic or not, have a tendency to remember their failures more than their successes and therefore anticipate further disaster. Correct that perception with some realistic evidence of progress the young person has made over time. An overwhelming week does not negate all of the gains that have been made in the last six months or the last year.
A further challenge is posed by the young person who sets goals that have little chance of success in the real world. This commonly occurs in youth on the autism spectrum whose long-term goals relate to one of their idiosyncratic interests. For example, a young man obsessed with “becoming a fry cook like Spongebob” may pursue a culinary career, only to find that he is actually too fearful around hot stoves and deep fryers to manage this. A young woman with severe learning disabilities and school avoidance may dream of becoming a video game designer, not realizing that this will not happen without a high school diploma. Dating and finding their prince (or princess) is a goal for some, but being unwilling to change a bedtime routine which starts at eight o’clock may make this difficult.
Young people on the spectrum may have a vivid fantasy life related to their interests, but little of what they imagine corresponds to reality. Helping bridge the gap between fantasy and reality is an important task for parents. Without help in this area, these young people are very vulnerable to depression when their fantasies are shown to be just that.
Some approaches to working with unrealistic goals include: finding a less ambitious goal, finding a “day job” and keeping the fantasy goal as a hobby, or compromising on routines for the sake of the goal. In the examples given, the potential “fry cook” could settle for being a prep cook who works on cutting and portioning food without having to deal with stoves and deep fryers; the potential video game designer could stock shelves at a computer store and design games as a hobby; the potential Romeo could work on tolerating a slightly later bedtime routine, at least on date nights. Think about how your youth’s goals or lifestyle might be modified to better approximate reality.
Sometimes, it is not clear whether or not a goal the young person wants to pursue is realistic. For example, driving a car is an age-appropriate goal for many teens and young adults, but not all are able to master it. Learning disabilities may interfere with the first basic step: getting a learner’s permit. Once in the car, coordination of hands and feet, visuospatial skills for navigation, and the ability to sustain attention to focus on the road are all essential. Autism can affect any or all of these.
In the face of such uncertainty, look at how motivated the young person is to pursue the goal. In the driving example, a highly motivated teen may persevere with multiple attempts to get the learner’s permit, many hours of practice in parking lots, and several driving instructors in order to achieve the goal of driving. A less motivated teen may give up after a few attempts or lessons. Try the activity and see how persistent your son or daughter is. This will often clarify whether or not the goal is worth pursuing. If the goal is eventually dropped, try not to get too upset. Rather, normalize some trial and error
