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Caring for AutismPractical Advice from a Parent and Physician$
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Michael Ellis

Print publication date: 2018

Print ISBN-13: 9780190259358

Published to Oxford Scholarship Online: November 2020

DOI: 10.1093/oso/9780190259358.001.0001

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PRINTED FROM OXFORD SCHOLARSHIP ONLINE (oxford.universitypressscholarship.com). (c) Copyright Oxford University Press, 2021. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in OSO for personal use. date: 06 December 2021

The Educational System and Autism Spectrum Disorder

The Educational System and Autism Spectrum Disorder

(p.162) (p.163) 9 The Educational System and Autism Spectrum Disorder
Caring for Autism

Michael Ellis

Oxford University Press

Navigating the educational system is likely the most treacherous and frustrating part of raising a child with autism spectrum disorder (ASD). Often parents feel that they have to be lawyers to understand the rights of their child and to advocate for appropriate resources at school. I know firsthand how difficult this can be. I can honestly state that next to a child’s severe tantrums, this is the most frustrating and pervasive problem parents may encounter. Typically, year after year and IEP (individualized education program) meeting after IEP meeting, the battle for even substandard education and services continues. Parents naturally assume that the school system would have to maintain certain standards and provide appropriate education and therapies for their child. One might even believe that the special education teacher, and the school district itself, would be more expert than the parent. Unfortunately, this is rarely the case. Training, especially specific to ASD, is usually quite poor. Aside from some very caring teachers, the system is often set up to fail the child. The school district likely saves money by refusing to provide additional services, modifications, or accommodations for your child. Typically, neither the school district nor the teacher will offer new services or resources to be expended on your child unless it is in their best interest. In most cases, you will have to fight for every resource you can get for your child. Do NOT be passive. Educate yourself about your rights and the possible resources available to your child. Talk to other parents in the autism community about the resources their children are receiving. Like many parents, I too at first felt that being profes­sional and “nice” was the best way to get my child “good” services. I thought, “You catch more flies with honey than vinegar.” Unfortunately, this naiveté did not pay off: things only worsened with this approach. It was not until we learned more about our rights as parents and challenged the school system that things improved at all.

Keywords:   Board Certified Behavior Analyst (BCBA), National Institutes of Health (NIH), behavior intervention program (BIP), individual education plans (IEPs), occupational therapist, occupational therapy, psychologist

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