JOURNEY TO INDEPENDENCE: Guiding your Child with Autism to Adulthood

Helping your child become a capable, independent adult starts now

 by Ellen Notbohm

It’s a beautiful vision on the horizon–your child with autism child 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?

We have no crystal ball, of course. But one thing of which we can be certain is that knowledge and insights in medical science and education will only continue to grow during all the years of your child’s development. Wherever your child falls on the spectrum, in no generation previous have parent had more reason to be to be optimistic about the futures of their children with autism.

Preparing your child for adulthood begins long before job skills training or learning to balance a checkbook. There is no recipe or how-to manual to give you all the answers for your unique child, but the seeds of preparation lie in just that– he 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 his success as an adult. See your child as a whole child, not a packet of issues or symptoms. Emphasize your child’s strengths, and use them to build his confidence in himself.

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% of your attention on him 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 a message that will disadvantage him greatly in adulthood.

DO take time to nurture yourself. It’s not selfish. 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—this sets the best kind of whole-person example for your child.

DO praise your child’s efforts as much or more than the outcome or the result. Keep the focus on what she can do, rather than what she 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 him learn the hard way” through humiliation or embarrassment will not teach your child anything other than that he can’t trust you.

DO realize that children learn more eagerly through fun. Your child will learn any skill more quickly if you make it relevant to his life and his interests. There is always more than one way to accomplish a task. Be curious, explorative. Find the inroads that make sense to him.

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 skills, social skills, language skills by getting in the pool or the ball pit with him. Go to the zoo and the library and the park; play with her 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 he “should” be. Respect your child’s unique trajectory. Encourage him or her to explore, to interact with people, to laugh and be curious, and do it with the understanding that regardless of ability or disability, your child is going to grow and develop and flourish if taught in a manner that accommodates and celebrates his or her style and pace of learning.

DO trust your instincts. You are the authority on your particular child. Talk to and listen to other parents, but don’t accept their experiences as have-to’s to your child. Regardless of whether every single family you encounter is using this diet or that therapy, if your gut and your experiences are telling you that it isn’t right for your child, listen to that little voice and keep looking for the best fit for your child and family.

DO think of your therapists and professionals as guides, not bosses, on 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 at the same moment you hear it. Remember that it’s a process, and that you can take time to acclimate to new information before acting upon it, or choosing not to.

DO know this: the most important thing a parent can do is help their child is to laugh, to play, to build relationships with all of the people in their lives. That’s more important than therapy, speech and language, cognition. When a child feels connected, he has the internal motivation he needs to do all those other things.

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.

NEVER FORGET that a parent’s attitude towards the child is going to be that child’s attitude towards himself. If helping your child create a sound social-emotional sense of self is not the primary focus, no amount of therapy or education you layer on top 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.

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 2007, 2013 Ellen Notbohm www.ellennotbohm.com

Ellen Notbohm is author of one of the autism community’s most beloved book, Ten Things Every Child with Autism Wishes You Knew and three other award-winning books on autism. Her work has informed, inspired and delighted millions in more than twenty languages. She is a longtime columnist for Autism Asperger’s Digest and a contributor to numerous publications, websites and conferences worldwide.

Contact the author for permission to reproduce in any way, including posting on the Internet.