Parental Perspectives & Supporting Families

Introduction

This presentation is from the point of view of the parent of a child with autism. It starts by reviewing the early warning signs of autism, highlighting the red flags and discussing the importance of early intervention. It then looks at the effect of an autism diagnosis on the entire family, focusing on the challenges families face finding and paying for treatments, gaining access to appropriate schools, and worrying about their child’s future. It also addresses the importance of focusing on evidence-based treatments for autism. Finally, it explains how and why many families fall victim to charlatans offering the latest “cure du jour” for autism.

Featured Reading

Featured reading for the Parental Perspectives & Supporting Families lecture comes from:

Boyd, B. (2003). Parenting a child with Asperger syndrome. London: Jessica Kingsley.

Find this book online at the Publisher's website or preview it in Google Books.

Reading List

Below are selected readings from the Parental Perspectives & Supporting Families class meeting as well as a link to find the reading online or to purchase the books online.

Boyd, B. (2003). Parenting a child with Asperger syndrome. London: Jessica Kingsley.

Find this book online at the Publisher's website or preview it in Google Books.

Coulter.D (Produce Director) (2007) Understanding brothers and sisters with Asperger syndrome [DVD]. Winston Salem, NC: Coulter Video. www.coultervideo.com

Find this video online at the Publisher's website.

Coulter, D. (Producer/Director). (2007). Understanding brothers and sisters on the autism spectrum [DVD]. Winston Salem, NC:Coulter Video.

Find this video online at the Publisher's website.

Coulter, D. (Producer/Director). (2004). Asperger syndrome for dad: Becoming an even better father to your child with Asperger syndrome [DVD]. Winston Salem, NC: Coulter Video. www.coultervideo.com, 336-794-0298.

Find this video online at the Publisher's website.

Coyne, P. (2004). Supporting individuals with autism spectrum disorder in recreation. Champaign, IL: Sagamore.

Find this book online at the Publisher's website.

Harris, S. L., & Glasberg, B. A. (2003). Siblings of children with autism: A guide for families (2nd ed). Bethesda, MD: Woodbine House.

Find this book online at the Publisher's website.

Naseef, R. A. (2001). Special children, challenged parents: The struggles and rewards of raising a child with a disability. Baltimore: Paul H. Brookes Publishers.

Find this book online at the Publisher's website.

Chapter 4, Getting Services, Chapter 9, Adolescence, Adulthood, and the Future, and Chapter 19, Managing Sibling and Family Issues, from "A Practical Guide to Autism".

F. R. Volkmar and L. A. Wiesner’s A Practical guide to autism: What every parent, family member, and teacher needs to know. Hoboken, NJ: John Wiley.

Find this book online at the Publisher's website or preview it in Google Books.

Media and Other Resources

External Resources

Autism Science Foundation
The Autism Science Foundation is a nonprofit corporation organized for charitable and educational purposes; its mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

Autism Phenome Project (APP)- UC Davis M.I.N.D. Institute
The Autism Phenome Project (APP) at the U.C. Davis M.I.N.D. Institute is conducting a wide assessment of children with autism in the hope of distinguishing subtypes or phenotypes of autism. The project will eventually include 1,800 children at multiple sites across the United States.

Your Family & Autism- Autism Speaks
Autism Speaks gives advice to parents on how to positively respond to a diagnosis of autism.

Patient Money- A Road Map to Help Parents Deal With the Financial Burden of Autism- NYTimes
This article gives advice on how to finance autism treatments and includes links to the websites of several organizations, including the National Autism Association, that offer financial assistance.

Autism Assessment and Education Planning for Children- University of California Television Patricia Schetter, M.A., and Kristine Strong, Ph.D., of the U.C. Davis M.I.N.D. Institute explore methods of planning for the educational achievement of students with Autism Spectrum Disorders (ASD). They focus specifically on using assessment to help design goals and provide rationales for placement and educational recommendations.

IAN Project
The Interactive Autism Network (IAN) is an innovative online project bringing together tens of thousands of people nationwide affected by Autism Spectrum Disorders and hundreds of researchers in a search for answers.

Faculty and Guest Bios

Bio Profile

Alison Singer

President

Alison Singer is Co-Founder and President of the Autism Science Foundation which supports autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. Founded by parents of children with autism, ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. The...

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