Dear Ms. Obinna,
We are writing in response to your article, “I was called a witch and my husband quickly divorced me – Oritoke Aluko – Olokun” and commend your coverage of an important topic such as the growing need for supports for adults with autism all over the globe. As you indicate in your article, autism is “a lifelong developmental disability that affects the way a person communicates and relates with people around him.” It is likely that Oritoke’s story resonates with many parents of children and adults with autism. While it is not our intent to comment on every aspect of your article, such as the possible causes of autism spectrum disorder (ASD) or familial matters that may be associated with a child’s autism diagnosis, we hope that your readers will consider that science should be at the forefront of every conversation about autism and that they can only benefit from weighing any information they hear or read against existing scientific evidence. Herein, we would like to take this opportunity to comment on just a few points in your article.
We are pleased to see that the Guaranty Trust Bank’s 7th Annual Autism Awareness Conference chose the topic of the transition from childhood to adulthood as their area of focus this year, as this is a matter in need of additional attention. You mention that “medical experts say, with structured support, victims can live a good life into adulthood.” With all due respect, we would like to propose a change to the word “victim” in your article as the definition of victim is, “A person harmed, injured, or killed as a result of a crime, accident, or other event or action” (Oxford Dictionaries, 2017). People with autism are not victims, and should not be portrayed as such in the media. Moreover, it would be helpful to caregivers who may be reading your article if the idea of “structured support” was elaborated upon so that they can make more informed decisions about what types of structured supports may be valuable for their children/adult children. As mentioned above, caregivers would then have better opportunities to weigh the ideas against existing scientific evidence. Or, your article might be expanded to include information about the science that does exist around “structured supports.” While “structured supports” is broad and may mean a variety of things, when it comes to discussing behavioral supports such as supports for daily living skills, social skills, job skills and more, those based on the principles of applied behavior analysis are grounded in decades of scientific evidence, and are worthy of mention. You can find more information on evidence-based practices from the website of the Association for Science in Autism Treatment (ASAT).
Oritoke explains that she found an institution called Autism Associates that helped her son to make improvements, but once he became an adult she found herself without a place for him to receive treatment. This is an ongoing struggle for many parents worldwide and we are so grateful that your article brings attention to this. Eventually, Oritoke received support from Patrick Speech and Languages Centre in Lagos, and “improved.” We are happy for Oritoke and her son Olusuen. Not everyone is fortunate enough to find services they would recount as helpful, and your article assists in raising awareness of this plight. While we do not know what specific interventions were employed at the Centre nor do we know what constitutes “improved,” we want to reiterate that all interventions should be grounded in science and established as effective so as not to waste a family’s time and resources, deliver ineffective results, or worst of all, cause harm. Caregivers of children with autism would be wise to research the specific instructional strategies and behavioral interventions being utilized before receiving services, recalling that the established approach for teaching new skills and decreasing problem behaviors for individuals with autism is applied behavior analysis. Even if applied behavior analysis is being utilized, caregivers should further research the specific qualifications of providers. For more information, see our Clinical Corner article titled, “Qualifications of Practitioners/Consultants Who Practice in the Field of ABA.”
It is fantastic that the conference this year not only shared personal stories of those affected by autism, but also provided consulting services and counseling for the parents in attendance. We are glad to see behavior analysis was one of the session topics as well, and we hope that in coming years the conference places further focus on applied behavior analytic interventions and their established effectiveness for individuals with autism.
ASAT continues to work on highlighting the unique challenges of those adults living with autism. For more information, please be sure to visit the Lifespan section of the ASAT website to review available resources, as well as the Clinical Corner features related to adolescents and adults with autism.
Thank you again for your coverage of this topic.
Sincerely,
Catherine Rooney, BCaBA and Renee Wozniak, PhD, BCBA-D
Association for Science in Autism Treatment
References
Oxford Dictionaries. (2017). Oxford University Press. Retrieved from:
https://www.oxforddictionaries.com/
