Journey to Independence
Here's how to help kids with autism become capable, self-confident adults.
It’s a beautiful vision on the horizon — your child with autism all grown up, a capable and independent adult. When our children are young, that horizon can seem very far away indeed. How will we get there? What should I be doing now?
Preparing your child for adulthood begins long before job skills training or learning to balance a checkbook. There is no how-to manual that will have all the answers for your unique child, but the seeds of preparation lie in the special abilities, strengths, interests and motivations that every child has.
The most important brick in your child’s road to adulthood is recognizing those special components and using them to develop your parent-child relationship in a way that gives him both roots and wings. Roots — knowing that he belongs, is connected to others, is valued and capable and needed. Wings — knowing that he has the inner resources to learn and do and, with practice and patience, succeed.
Today is a great day to start that adventure. Here are some do’s and don’ts to watch for along the way:
Do recognize that your child’s relationship with you and with all the members of your family will be the single strongest determinant of her success as an adult. See your child as a whole, not a packet of issues or symptoms.
Emphasize your child’s strengths and use them to build her self-confidence.
Don't let his autism drive a wedge between him and the rest of the family. See your child as a full-fledged member of your family — with needs, yes, but also with responsibilities to others.
Don't focus 100 percent of your attention on her in a manner that suggests that other members of the family are not equally important.
Don't sacrifice all of yourself for the needs of your child, neglecting siblings who are also “works-in-progress,” not allowing time for grandparents, cousins and friends. This sends a message to the child that he is the hub of the wheel around which everyone else turns. It’s not a message that will serve him well in adulthood.
Do take the time to nurture yourself. It’s not selfish. In fact, it’s just the opposite. Letting your child see you as a multi-dimensional adult who enjoys life, is involved in community, takes good care of her own health, allows herself fun, respite and recreation — sets the best kind of example for your child.
Do praise your child’s efforts — not the outcome or the result. Keep the focus on what he can do, rather than what he can’t do. Know that every child has the capacity to achieve more than what he is currently able to do, but that for him, learning a skill requires exponentially more repetition and practice than it might for a typically-developing child.
Recognize that it is your responsibility to provide not only the opportunities for practice — but also to maintain patience throughout the learning process. Impatience, exasperation or “letting her learn the hard way” through humiliation or embarrassment will not help your child learn anything other than that she can’t trust you.
Do realize that children learn more eagerly through fun. Your child will learn any skill much more quickly if you make it relevant to his life and his interests. There is always more than one way to accomplish a task — find the ones that make sense to him.
The most important thing parents can do is to help their child laugh, play, and build relationships with all of the people in their lives. That’s more important than therapy, speech and language or cognition. When a child feels connected, she has the internal motivation she needs to do all those other things.
Don’t “therapize” your child, filling his days with rounds of adults who are all trying to fix something. Think about the message this sends to the child. Involve yourself and your family in every creative way you can. Interact! Do what your child loves and do it with him — practice motor, social and language skills by getting in the pool or the ball pit with him. Go to the zoo, library and park, play in the snow and the sandbox and the puddles.
Do throw out standard measurement assessments such as growth charts or speech/cognitive/motor milestones aimed at the general population. Don’t use “normal” as a measure of where she “should” be. Respect your child’s unique trajectory. Encourage her to explore, to interact with people, to laugh and be curious, understanding that regardless of ability or disability, she’s going to grow and develop and flourish if taught in a manner that accommodates her style of learning.
Do trust your instincts. You are the authority on your child. Talk to and listen to other parents, but don’t accept their experiences as have-to’s for your child. Regardless of whether other families are using this diet or that therapy, if your gut and experiences tell you that it isn’t right for your child, listen to that voice and keep looking for the best “fit” for your child and family.
Do think of your therapists and professionals as guides, not bosses, for your child’s journey to adulthood. Be willing to listen to the information they give you, even if you are not quite ready to hear some of it. Don’t feel obligated to react to everything you hear. Remember that it’s a process, and that you can take time to assimilate information before acting upon it — or choosing not to.
Do remember, amid all you are trying to accomplish, that you have time. Pace yourself. You have today, and tomorrow. You have next week, next month, next year and many years to come.
Don’t forget that a parent’s attitude towards the child is going to be that child’s attitude towards himself. If helping create a sound sense of self is not your primary focus, no amount of therapy or education is going to matter.
See him and celebrate him as the capable, interesting, productive and valuable adult you believe he can be. Hold that vision, because through your eyes, he sees it too. Seeing is believing, and believing makes it happen.
Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew (Future Horizons, $14.95) and three other books on autism.