Perceptions of Autism
Brief History
Autism is a neurological condition estimated to affect one in fifty-nine children ("Autism Spectrum Disorder (ASD)"). Individuals with Autism view the world differently from others. The cause of these differences and the best way to treat them have been debated throughout history. Psychologists, behaviorists, and parents have all had something to say. The timeline to the right is not comprehensive, but it shows how views of autism have changed over time. It covers the first recognition of autism and the shift from a Freudian to a behaviorist view of the condition. It also follows how Autism has appeared in the Diagnostic and Statistical Manual (DSM) widely used to diagnose mental and neurological abnormalities.
"If you are happily married, I will make sure your marriage fails."
-Autism
From Schizophrenia to Vaccine Injury
"I could have raised hitler to be a nice person"
-O.I. Lovaas
The Dark Roots of ABA
As ABA is still the most commonly used treatment for autism, its beginnings under Dr. Lovaas at the University of California Los Angeles (UCLA) are important. The images to the left are from 1965 and document Lovaas's treatment of four autistic children. In some of the pictures, the children are clearly shown affection, usually as a reward for good behavior, but in others, painful punishments including shock therapy are used. Most ABA treatment, no longer uses such methods, known as "aversives". Instead undesirable behaviors are simply ignored, while desired behaviors are reinforced. However, aversive methods were used in producing the results of the 1987 study which is the main evidence in supporting the use of ABA. The results of that study have never been replicated (Coplan). Meanwhile, ABA still faces the ethical issue of deciding which behaviors are appropriate and which must be extinguished, especially when parents and behaviorists rather than autistic children are the ones making that decision.
"Not talking is not the same as not thinking."
-Ido Kedar
The Problem With Autism Speaks
Autism Speaks is the best example of the current issue regarding the discourse about autism. Individuals who are neurotypical (NT), meaning not autistic control the narrative and the decisions that are made. John Elder Robison was the only autistic employee to ever work for AS meaning that it is now entirely an NT organization despite its stated purpose of serving the autistic community. Autism Speaks also supports ABA. A therapy in which NT adults decide how to define proper behavior and then use operant conditioning to impose that behavior. Below are two videos. One is the "I am Autism Video." The first 1' 45" contain the infamous descriptions and claims about autism. The rest of the video calls parents, doctors, educators and others to action. The video to the right is a parody entitled "I am Autism Speaks." Note the narration using assisted communication. It shows that even non-verbal autistic individuals still have thoughts that deserve to be heard.
"Without an ability to communicate, we are left silent, and believed to have nothing to say."
-Emma Zurcher-Long
Parting Thoughts
Some things to think about before you click away:
Re: ABA
-ABA is not just an autism treatment. The behaviorist view of psychology has issues, but the principles of behaviorism are powerful for modifying behavior. What types of behaviors are ethically appropriate to reinforce or extinguish? Would this be ethical to use on NT children? How about adults?
Re: The DSM-V
The changes made in the DSM-V fundamentally changed the definitions of autism. While science supports the idea that the Autism Spectrum refers to a single condition, people still carry diagnoses of Asperger's or PDD-NOS received under the DSM-IV criteria. How should these people be described, treated, and diagnosed now?
Re: Autism Speaks
While other Autism societies exist, Autism Speaks is still the largest and with John Elder Robison's resignation, not a single autistic person sits on their board or even under their employment. How then should people with autism advocate for themselves especially when Autism Speaks fails to represent them?
Sources:
-CDC Data
“Autism Spectrum Disorder (ASD).” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 15 Nov. 2018, www.cdc.gov/ncbddd/autism/data.html.
-On early theories:
“History of Autism.” Your Number One Autism Resource, projectautism.org/history-of-autism.
-On the 1987 Study:
Coplan, James. “023. Behaviorism, Part 3: O. Ivar Lovaas and ABA.” Psychology Today, Sussex Publishers, www.psychologytoday.com/us/blog/making-sense-autistic-spectrum-disorders/201009/023-behaviorism-part-3-o-ivar-lovaas-and-aba.
Lovaas, O. Ivar. “Behavioral Treatment and Normal Educational and Intellectual Functioning in Young Autistic Children.” Journal of Consulting and Clinical Psychology, vol. 55, no. 1, 1987, pp. 3–9., doi:10.1037//0022-006x.55.1.3.
-On the DSM:
Zeldovich, Lina. “The Evolution of 'Autism' as a Diagnosis, Explained.” Spectrum | Autism Research News, 29 May 2018, www.spectrumnews.org/news/evolution-autism-diagnosis-explained/.
-On Andrew Wakefield
Park, Alice. “Doctor behind Vaccine-Autism Link Loses License.” Time, Time, 24 May 2010, healthland.time.com/2010/05/24/doctor-behind-vaccine-autism-link-loses-license/.
-On autism speaks
“Our Founders.” Autism Speaks, www.autismspeaks.org/our-founders.
Robison, John Elder. “I Resign My Roles at Autism Speaks.” Look Me In The Eye, Blogger, 13 Nov. 2013, jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html.
Wallis, Claudia. “'I Am Autism': An Advocacy Video Sparks Protest.” Time, Time Inc., 6 Nov. 2009, content.time.com/time/health/article/0,8599,1935959,00.html.
-Quotes:
Kedar, Ido. “Not Talking Is Not the Same as Not Thinking.” Ido in Autismland, 23 Sept. 2018, idoinautismland.com/?p=764.
Zurcher-Long, Emma. “Methods of Communication – My Research Paper.” Emma's Hope Book, 9 Dec. 2017, emmashopebook.com/2017/12/09/methods-of-communication-my-research-paper/.
Further Reading
For proof that speech and intelligence are not the same, see Ido Kedar's website. Ido Kedar is autistic and does not speak, but is the author of two books. Also try Emma's Hopebook a blog by Emma Zurcher-Long, an autistic girl with unreliable speech. I recommend this satire written in a guest post by Ariane Zurcher, mother to Emma.
For a poignant view of ABA written by an autistic person I recommend The Misbehavior of Behaviorists by Michelle Dawson.
Musings of an Aspie is a site with greater focus on Asperger's syndrome. It provides good information as well as its own version of satire.
As an alternative to Autism Speaks, try supporting the Autistic Self Advocacy Network (ASAN). An organization created by and for autistics. "Nothing about us without us."