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Journey to Independence: Guiding Your Child with Autism to Adulthood

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 far away. 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 parents had more reason to be optimistic about the futures of children with autism.

Preparing your child for adulthood begins long before job skills training or learning to balance a chequebook. 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: 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 your child roots and wings. Roots - knowing that your child belongs, is connected to others, is valued and capable and needed. Wings - knowing that your child 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 dos and don’ts to watch for along the way:

Do recognize that your child’s relationship with you and with all family members will be the single strongest determinant of their success as an adult. See your child as a whole child, not as a packet of ‘issues’ or ‘symptoms.’ Emphasize your child’s strengths, and use those strengths to help your child build their own confidence.

Don’t let your child’s autism drive a wedge between him/herself 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 per cent of your attention on your child in a manner that suggests that other members of the family are not equally as important to you.

Don’t sacrifice all of yourself for the needs of your child, neglect the siblings who are also ‘works in progress,’ not allowing time for grandparents, cousins, and friends. This sends a message to the autistic child that they are the hub of the wheel around which everyone else turns. It’s a message that will disadvantage them greatly in adulthood.

Do take time to nurture yourself. It’s not selfish. In fact, it’s just the opposite. Letting your child see you as a multidimensional adult who enjoys life, is involved in the community, takes good care of their health, and allows time for 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 your child can do, rather than what they can’t do. Know that every child has the capacity to achieve more than what they are currently able to do, but that for them, 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 them learn ‘the hard way’ through humiliation or embarrassment will not teach your child anything other than that they 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 their life and their interests. There is always more than one way to accomplish a task. Be curious, explorative. Find the inroads that make sense to your child.

Don’t ‘therapize’ your child, filling their 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 your child: practice motor skills, social skills, and language skills by getting in the pool or in the ball pit with them. Go to the zoo and the library and the park; play with them 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 your child ‘should’ be. Respect your child’s unique trajectory. Encourage your child to explore, interact with people, 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 their style and pace of learning.

Do trust your instincts. You are the authority on your particular child. Talk to and listen to other parents who have a child with autism, but don’t accept their experiences as ‘have-tos’ 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 about your child’s autism at the same moment you hear it. Remember that it’s a process, and 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 to help their child is to laugh, play, and 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, they have the internal motivation they need to do all these other things.

Do remember, amid all you are trying to accomplish, 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 toward their child is going to be that child’s attitude toward themself. 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 your child and celebrate them as the capable, interesting, productive, and valuable adult you believe they can be. Hold that vision because through your eyes, they see it, too. Seeing is believing, and believing makes it happen.

Ellen 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 20 languages. She is a long-time columnist for Autism Asperger’s Digest, and a contributor to numerous publications, websites, and conferences worldwide.

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