The World of the Autistic Child: Understanding and Treating Autistic Spectrum Disorders

By Bryna Siegel | Go to book overview

in residential placement, and so on. The main drawback to being part of a group that serves families with children with a range of disabilities is that it is likely to contain parents who may mainly focus on the physical handicaps or medical fragility of their children, or who have children who are very social and mainly mentally retarded. It can be difficult (and maybe even frightening) for these other parents to relate to your main issues as the parent of an autistic child (and vice versa).

Support organizations help many people, and for a few, become a major organizing feature of their lives. But there are some families who will never be comfortable sharing their distress in public. For these families, support from within the extended family, and the parents' support for one another, may be key factors instead of support groups.


Chapter Summary

In this chapter, we've discussed what kind of help is out there for your child and for you. It is no easy matter to negotiate the developmental disabilities and special education system--especially at first, when you are just getting used to the idea that your child has a disability. Over time, as parents gain knowledge, and see what does and does not work for their individual child, they definitely become their child's most important resource. While you may need to enlist help from doctors, therapists, teachers, advocates, and lawyers to play the "getting services" game, you, as the parent, are the chief executive officer. Professionals can give you ideas, but you will be the one seeing the bigger picture of how all your child's services fit together--and know how much these services help in living with your child day-to-day. Unfortunately, services for disabled children are chronically underfunded, and unless you take an active role, you will almost certainly get less rather than more.

Autism is a fairly rare disorder, as we've discussed, and you'll encounter many people with plenty of misinformation, or complete lack of information, about autism. Your job will be to educate these people while finding a way of educating your child.

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