We took a moment to speak with Animate Behavior Clinical Director, BCBA Hailey Purvis, about the importance of respecting the dignity of people with autism. If you are a caregiver, educator, parent or clinician, exhibiting true empathy and respect for people with ASD will nurture lasting relationships and create a positive, safe place for learning.
When done correctly and effectively, ABA interventions take the whole child into account. Who is the child? What is her/his family like? What skills does this child need to have to make her or him as independent and happy as possible? Hailey Purvis said, “the field of Applied Behavior Analysis was built on, and is driven by data. As a profession, we grow and learn through evidence-based research. However, the point of ABA is to help clients develop skills so that they can live their lives as comfortably and typically as possible. Our role is not to change a child but help them be happy and to live to their fullest potential.”
Attending to and respecting a child with autism
During conversation, nobody likes to feel ignored or discounted. Over time, this type of reaction to a child, who has difficulty starting or maintaining conversations can impact their self-esteem and self-worth. Children with autism should be attended to and acknowledged in a manner similar to how we would engage a typically neurodeveloping person. Doing so can create a safe learning environment.
Hailey shares her insight, “We look at typical people and assume they have a comfortable life. Typical people are acknowledged when they speak or ask for something. You treat them as a human. If we want kids with autism to have a typical life, we should treat them as such, in conjunction with our ABA strategies. For example, if your child has difficulty attending to a conversation and often abruptly changes topics, you may become angry and sometimes express that. This can have an impact on the child’s self-esteem. A typically neurodeveloping person would be acknowledged. An ABA therapist should acknowledge the child, gently steer them back to the topic of discussion, reinforce them, then return to their preferred topic. This approach helps the child to feel seen and heard while rewarding them when they stay on topic.”
How people with autism were treated then and now
Hailey continued to explain how we, as a profession and society, have evolved in a manner that is now more often taking the self esteem and dignity of clients into consideration. “One of the very first things I learned is in general how people with special needs were treated. It was dehumanizing. Put them in an institute, let’s make the parent’s life better, but not the kid. Now, we consider their life. If their life is better, yours will be. We ask, parents, ‘what do you want to do with your kid? Your kid tantrums at the mall? Why?’ We find this out and teach to it. We ethically help them and their lives. ABA is heavily based on ethics, to help the family as a whole. One of the key ethical guidelines is around client rights; we believe that you treat the client as a human. As Behavior Analysts, it’s a better and more effective treatment. It is an ethical practice. It is not like everyone can do it. You need to have some sort of humanity to you. We cannot treat them as anything less. It is engrained in what we do.”
There has been a shift in how professionals interface with clients with autism, their families, and caregivers. However, how far has the general public moved towards their understanding of autism and ethical treatment of people with developmental disabilities? What can we do to be better advocates and spread the truth? Hailey said, “I think that parents, family members, and people who have friends and family should advocate. I think we need to continue to disseminate information about ethical ABA practices to the general public. They may have a stereotyped understanding of autism, therapy, reinforcement, and punishment. I think we need to disseminate what our practice truly is. A kid with ASD does not always look like X, Y, Z. We need to educate small groups of people and the public as a whole. Through the education of small groups, the general public can become more informed around autism, ABA, positive reinforcement and punishment.”
Of course, these are ideals and the reality can be in flux and different from case to case. So, how do ABA clinicians deal with this variation? How would a Behavior Analyst engage caregivers and small groups to make said change? Hailey speaks about her approach and experience on this matter:
“The first thing caregivers need is an open mind. The way we approach parent training is different from what many are accustom to. There is sometimes a wall up because it is so different. I think it is crucial to understand that it will not always go perfectly, and as a parent or caregiver, you should give yourself space to make mistakes. The real world is different from what it would look like in a perfect condition. I’ve heard many people say ‘he has autism, he has a developmental delay, and I do not know how to work with kids like this, I have no experience.’ We need to stop looking so much at the diagnosis and look at the behavior and the function of that behavior. There is a reason behind every behavior. A child who may not have a diagnosis may engage in unwanted behavior; this should be looked at and addressed.”
Hailey concluded, “Our job as ABA clinicians is essentially to put ourselves out of a job. It is not to change the child; it is to make the child comfortable in life. We look at typical people and assume they have a comfortable life. Typical people are acknowledged. You treat them as a human. If we want kids to have a typical life, we should treat them as such, in conjunction with our ABA strategies.”