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.
Excerpts from Don’t Medicate—Educate!
Many individuals are not receiving the educational therapies they need, including applied behavior analysis, 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.
 “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/.
Foreword by Debora Thivierge, BCaBA, CBAA
Chapter 1: My Brothers’ First Years
Initial Diagnoses, Therapies, and Schools
Getting Around the “Gag Rule,” Board of Education Style
My Early Years
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: Talia—Autism 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
Progress for Talia, Disaster for Other Children
Hurricane Sandy: Living with Autism without Electricity
Medicaid Waiver Adventures
Autism Insurance Law
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
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
New York State Education Department and Aversives
United Nations and Aversives
The Food and Drug Administration and Aversives
Advocacy in State Houses and Congress
Chapter 6: 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