10 months ago



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Free ebooks ==> Trevor 135 while my gaze was directed at the car going round and round in circles. Trevor looked at neither me nor the toy. I then gave him the remote control. A typical child will proudly show his parents how he can make the car move and might even offer to share the device with them. Unfortunately, Trevor displayed none of these social–communication skills. The diagnosis was obvious, and I delivered the bad news. Alice had been present many times when bad news had been delivered to other parents on the ward, and so she was quite prepared to hear it. “OK, so what do we do now?” Alice was eager to start working with her son on his social and communication skills as soon as possible. “I want to have a closer relationship with him. I want him to get better. I don’t want him to be shunted aside as he grows up. He is my only child. I’m prepared to do anything.” I tried to reassure her that if we could get him into a treatment program soon, it would make a big difference to his development. There now was some persuasive research on early intervention and the difference it can make in improving outcomes. But the first step was to identify his treatment needs more specifically and for Alice to learn more about the various treatment options that were available. This takes some time. She turned to our treatment team to help her through this next phase. Alice went to information nights we ran at the hospital on treatment, joined the local parent support group, talked to team members about situations at home and to other parents who had older children. She read many different books on treatment, including the testimonials of miraculous recovery “if only one followed this or that treatment program.” She also read the more sober textbooks and treatment manuals that provided a more balanced account. Then she went on the Internet and read about other treatment options that were less well known, that had not been scientifically evaluated but had received a lot of press and testimonial evidence of success. But at the end of all this information gathering, she felt no farther ahead. Worse, she was beginning to feel frantic. She did not know where to start—so many options, so many choices to make. Alice found all this information bewildering and disorienting. She was terrified that if she made the wrong choice, or delayed treatment any longer, all hope for Trevor’s progress would be lost. Some of the information she read applied to Trevor, but certainly not all of it did. Some interventions she could implement at home, but others were not appropriate either because Trevor already had some basic skills or else Alice did not have the resources or the time to implement the more time-demanding strate-

136 A MIND APART gies. Yet she felt guilty because she couldn’t do all the things that seemed to promise remarkable success if only she started right now. She just did not know where to begin. She told me she felt like she was in a dream, wandering around lost in some nightmarish carnival with all those flashing lights and “hucksters” yelling at her to try this ride or that game and promising instant riches. Like many parents, Alice found it impossible to sort through all the information and to decide what to use and what to discard. This frantic search for the right treatment program is all too common. Parents are desperate to find solutions and become easily overwhelmed with information overload. The problem is that the information that is out there for parents is filled with specifics of this or that approach, without first explaining some principles, providing a framework to understand. In addition, much of the information that is out there is not scientifically valid, or evidence-based. Alice had gone off to read the treatment manuals in her haste to help Trevor without first developing a good understanding of ASD as a disorder—what its manifestations are, what the underlying deficits might be, what strengths can be exploited in the various treatment programs. Parents need that framework in order to evaluate the evidence for each treatment option. Understanding the inner world of the child with ASD and the struggles that parents must endure is part of the “art” of implementing treatment programs in real community settings and of sifting through the literature. Indeed this understanding is a prerequisite to beginning any form of treatment, especially early intervention, since it provides a framework for understanding the goals of therapy and where to begin, and suggests methods for achieving that end. The early intervention manuals have a lot of useful information on how to do things, but it’s also important to understand context, which in this instance is the inner world of the child with ASD, so mysterious yet so familiar at the same time. Taking a little time to see how ASD is a manifestation of deficits in theory of mind, in weak central coherence, in executive function, and in visual attention is an important first step. The first thing we needed to do for Alice was to help her enter Trevor’s world at his own level. Alice needed to understand what went on in Trevor’s mind, how he saw the world and experienced all its vicissitudes of change and challenge, the constant swarm of sensations and chaos and the patterns seen in the most unlikely places. Over time, Alice watched Trevor very closely, especially in his play activities and how he spent his time. She also watched him in his play group at the

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