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Ilana Slaff, M.D.

Dr. Slaff writes about her personal and professional involvement in autism. She discusses her identical twin brothers’ and daughter’s life-threatening behaviors—one requiring surgery—and how her brothers’ different residential placements have made them so different. She discusses the controversy of aversive skin shock, a research-based treatment that saved her brother’s life. She describes the dangers of psychotropic medications, particularly for individuals with developmental disabilities, and how her brothers experienced devastating side effects. She examines how medication is frequently substituted for behavioral educational interventions. She talks about termination of services after individuals turn twenty-one. She writes about her own experiences treating individuals with developmental disabilities. She discusses her advocacy with school districts and other government officials and what must be done to improve services. She makes recommendations to parents to identify and obtain the treatments their loved ones need.

 
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Excerpts from Don’t Medicate—Educate!

Many individuals are not receiving the educational therapies they need, including applied behavior analysis,[1] so their behaviors are not under control. Many end up needing residential placements and chemical and physical restraints just so no one gets hurt. The chemical restraints, as shown in my brothers’ experiences, do not always work to stop the danger. One of the reasons for the system’s reliance on chemical restraints is risk aversion: if a patient displays dangerous aggression or suffers a self-injury when behavioral therapies are not available, the doctor can be sued for malpractice for not prescribing medication or other treatment.

The first four chapters discuss my personal experiences with my family members who have autism and the struggles to obtain effective treatment. The book discusses how one brother has been doing well with effective treatment, while his twin has done poorly. It also discusses effective treatment for my daughter.

To determine if a treatment is effective or dangerous requires research. In chapter 5, I discuss published research on positive-behavior treatments, aversives, and psychotropic medications used to treat individuals with autism or other developmental disabilities. The discussion includes specific risks to individuals with autism and developmental disabilities in general. I also discuss what is actually being implemented in real-life settings and advocating for evidence-based treatment. Recommendations to improve access to effective interventions are discussed in chapter 6. In the appendix, I have included a history of evidence-based treatments utilized in autism to familiarize readers to topics discussed throughout this book.

 

[1] ABA is a systematic approach for influencing socially important behavior through the identification of reliably related environmental variables and the production of behavior change techniques that make use of those findings.” Behavior Analyst Certification Board, accessed January 10, 2016, http://bacb.com/about-behavior-analysis/.


BOOK Contents

Contents

Foreword by Debora Thivierge, BCaBA, CBAA

Introduction

Chapter 1: My Brothers’ First Years

            Initial Diagnoses, Therapies, and Schools

            Getting Around the “Gag Rule,” Board of Education Style

            My Early Years

            Busing Problems

            Going to Europe for Help

Chapter 2: Matthew—Intensive Positive Reinforcement with Skin Shocks Saving His Life and Yet the Government Trying to Stop His Treatment

Hospitals, Medications, and Surgery

Behavior Therapy: Safe and Effective Treatment

New York State Tries to Terminate Matthew’s Funding

It Is My Belief That Massachusetts and New York Conspired to Destroy the Judge Rotenberg Center

After Twenty-Five Years at the Judge Rotenberg Center, New York State Tries to Relocate Matthew Again

My Brothers’ Fortieth Birthday

Chapter 3: Stuart Lost His Quality of Life

Behavior Therapy with Rewards and Consequences Fosters Independence and Inclusion

How “Positive” Behavior Supports Destroyed Stuart

Chapter 4: TaliaAutism All Over Again

Early Signs of Autism

Initial Home-Based Therapy

Obtaining Effective Preschool Special-Education Services

Speech, Occupational, and Physical Therapy That Works for Talia

Aggression, Self-Injury, Pica, Food Stealing, and Improvement

Special-Education School Placement

School Age Committee on Special Education Encounters

Why Some School Placements Were Inappropriate and How to Fix Problems and Get Results

Personal Debt and Anxiety Fighting for Effective Autism Treatment

Impartial Hearings

Progress for Talia, Disaster for Other Children

Busing

Hurricane Sandy: Living with Autism without Electricity

Medicaid Waiver Adventures

Autism Insurance Law

Blood Work

The Alternative Treatments I Tried

Accepting Talia’s Autism and Finding Joy

Chapter 5: Research and Clinical Applications—Positive-Only Treatments, Aversives, Medications, Developmental Disabilities, and Advocacy

            Shock Controversy

            Ineffective and Nonexistent Behavior Plans

            Lack of Programs

            “Age-Appropriate” Activities Are Inappropriate

            Shock and the Media

            Psychiatric Visits and Unclear Diagnoses

            Medications: Overuse, Misuse, and Dangers

            Alternative Treatments: Limitations and Risks

            Painful Situations, Bullying, and Murder

            Abuse

            New York State Education Department and Aversives

            Anti-aversive Organizations

            United Nations and Aversives

            The Food and Drug Administration and Aversives

Poetic Advocacy

Advocacy in State Houses and Congress

Chapter 6: Recommendations

General Recommendations

Is the School Appropriate? Terms to Know

Recommendations to Parents

Concluding Notes: A Tribute to My Father, Myron Slaff, Mayer ben Yisrael

Appendix: History of Effective Treatments Used in Autism

Index