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Dealing with the Emotional, Physical, and Financial Burdens of Autism

This article examines the emotional, physical, and financial stresses that parents often experience after their child is diagnosed with autism.

In this article, you will find:

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If a clinician tells you that she's not documenting any type of changes, be concerned – the only way to evaluate whether a treatment program is working is to analyze the changes your child is making. Also be wary of any therapist who says that he's working on the "parent-child bond," and that fixing your relationship with your child will improve her behavior.

In other words, if your therapist is excluding you, blaming you, or using techniques that do not have measurable outcomes, you should consider looking for another therapist or agency.

The Stress of Feeling Emotionally Cut Off from Your Own Child
Most children with autism don't seek adult attention and don't share things they enjoy or are interested in. Children with autism don't usually get pleasure out of simple little social games like peek-a-boo, and they probably won't come running when you call out to them that you see something interesting out the window. These simple and meaningful little interactions bring out the best in parents, whose very attention usually acts as a positive reinforcement for their children's responsiveness, but unfortunately they don't often happen when a child has autism. For this reason, parents of children with autism need to master a whole new set of parenting skills, which adds even more stress to their emotional lives.

Sadly, many wonderful parents feel that they lack competence in dealing with their child with autism. It can be strange, alienating, and depressing to feel like your instincts are wrong when it comes to interacting with your own child. People frequently go too far in the opposite direction and stop having any natural parent/child interactions, worrying that if they relax and just fool around or talk nonsensically with their child, they'll lose precious moments of intervention time.

There are interventions that increase parents' stress by requiring unusual and difficult-to-engineer interactions between them and their child, and there are equally effective interventions – like those described in this book – that can be implemented in the context of natural activities. Don't feel like you have to sit down and spend hours drilling your child – you'll end up feeling guilty either because you don't spend as much time drilling her as you think you should, or because you're taking time away from other important people in your life to do so.

Your child will learn more if you weave interventions into the context of daily activities, and your family life will be stronger for it.

Find Ways to Appreciate Your Child: Focus on His Strengths and Celebrate His Progress
Your child may have areas that need intervention, but every child also has special areas of strength. Don't just focus on the problem areas. Areas of strength can be used to improve areas of weakness. Focus on these areas of strength. Expand these areas.

For example, we worked with one preschooler who liked books but never engaged in any other kind of play, not interactive play, not pretend play, nothing. Rather than force him to play with toys he didn't like, we started using the books for imaginary play, pretending we were doing what the characters were doing. We were also able to use the books to work on turn taking, social conversation, and academic skills. Over time, he learned to pretend, to share, and to make comments about the stories. And by the time he got into kindergarten, he had learned to read and was able to read out loud to the class. This greatly impressed his classmates, who sought him out to read to them during unstructured class times.

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