By Natalie DePyper, a member of SkillCorps Kenya April 2017 team
In Kenya, it is a beautiful Sunday morning of April the ninth. Nine days into Autism Awareness Month. I have spent all of these nine days in Nairobi Kenya while away from my country, job, family and friends, with a team of women who are all very much involved with the autism community. We have only just met and are from different places in the world, different backgrounds, different jobs etc. We have all come to Nairobi to partner with the Kaizora Institute to learn about autism here in Nairobi, and to put our knowledge of Applied Behavior Analysis (ABA) together with Kaizora’s knowledge to work with children with autism and other disabilities.
Kaizora has altered my life, inspired me, given me new ideas, and in only nine days, has changed how I feel about our services in America. There is so much to learn about the way other parts of the world do things and so much room for growth.
Where I come from, ABA is a growing field but is also very new and there are many people who do not know what it is. I am glad that ABA is growing because I believe in its core and what it can do for people with autism and their families. I have seen it and I have been a part of it. Families who have children with autism are just like families who have typically developing children. They are full of love, relationships, challenges, growing pains, and trial and error. However, families who have members with autism often face these parts of life in a more intense, complicated, and frustrating way.
I was recently at the United Nations for the World Autism Event taking place on site, and I was so enthralled with everything and everyone at this event. I was happy that hard conversations were taking place and that the speakers with the most priority were family members, parents, siblings of those with autism and of people who have autism themselves. This is what the world needs to see and hear. The real lives of the autism community, the ups and the downs, and the voices asking for support when able to share their struggles and needs.
A parent spoke about the hard decisions she has had to make when coming to care for her child over the years. This mother spoke about having to make choices when it came to medical care for her child and how difficult it is to battle the behaviors associated with routine care. I related to this mother through my workplace. I am a Registered Behavior Technician (RBT). I work with children ages 2-16 that come to our center for ABA therapy. Last year, two of my clients were due for a dental cleaning and checkup and I distinctly remember the following day when they came to therapy. Both of them are young and nonverbal and both of them ended up having traumatic experiences at the dentist appointment. The numbing process for cavities and cleaning left the children biting at their mouths/lips area for so long that the wounds from this self-injury behavior (SIB) lasted for weeks. How does a parent decide these things? Should I avoid preventative care for my child so that these new behaviors and consequences won’t occur, or do I continue to take them and deal with the conditions? This is why I am glad the conversations at the U.N. were honest and raw. This is what parenting to autism can look like and often, just a small part of what the struggle is.
So, let us talk about ABA. It is Autism Awareness month and people all over the world are sharing ideas, stories, posts, photos, “Light it up – Blue” tags, and all types of social media shares to show support of autism. The most troubling part of this awareness movement is the backlash and the support of false ABA reports. A specific article titled, I Abused Children for a Living, is getting a lot of attention on the internet. And I am here to say, rightly so, but also, NO.
The truths of this author’s article lie in the depths of improper, poorly run ABA programs. The truths of this article come to life with the fact that yes, there are unethical and ugly centers, programs, therapists, Board Certified Behavior Analysts (BCBA’s) and supervisors. People can abuse the title of ABA. The truth to this article is because behind all this ugliness is a body of human beings. I believe that these humans did have good intentions. I bet these humans and myself have a lot in common and a lot to learn. But humans have errors and flaws and sometimes what we think is “helping” is hurting the most and doing the exact opposite. What the author of the article could have done was stand up to the company, question their practices, report them, seek help and find a solution. Maybe they already have.
I am here to stand up for ABA and for the families who support ABA not because I am a person in the field, but because I am a human who has seen ABA used correctly and in a supportive environment where technicians, therapists, BCBA’s, schools, and parents are all on the same page. I have been a part of ABA where the client/child/family is the most important thing and the priority of ABA has been to make them as human and important as they are meant to be. It breaks my heart that not all services to people in need are good and that some of them are dehumanizing or conducted in ways that aren’t intended. There are unjust systems everywhere in the world and it is our job as humans, family members, teachers, and therapists to make sure that we change that. As a RBT, and future BCBA, and current abroad volunteer for the Global Autism Project, it is my job to raise awareness during this month, and throughout my career working with the autism community. It is my job to be an advocate of just practices and to listen to the needs of my clients and their families. It is my job to spread acceptance and to continue to ask hard questions, learn from autism communities all over the world, and to ensure the best practices are made possible.
Join me in search for best practices, autism acceptance, listening to hard conversations and being bold enough to find truth and work towards community integration of those who have autism. Whether you are in Kenya, America, or any other part of the world, there is much work to still be done.
I Abuse Children for a Living – https://madasbirdsblog.wordpress.com/2017/04/03/i-abused-children-for-a-living/?iframe=true&theme_preview=true
True ABA Therapy is Not Abuse: A Response – http://www.singingthroughtherain.net/2017/04/aba-not-abuse.html