It is estimated that it costs 2.3 million dollars over a lifespan to educate a child with autism spectrum disorder (ASD). With the incidence of autism being 1:68, a significant investment is being made to help these children become as functional and independent as possible. However, the reality is, with increased independence, comes increased risks.
According to a report released by the Ruderman Family Foundation (May, 2016), one third to one half of all individuals killed by law enforcement have disabilities or mental health conditions. Given the complexity of autism, I would surmise that individuals with ASD would be at an even greater risk when dealing with law enforcement. We know that autism is a spectrum disorder which means that there are a range of behaviors present in varying degrees. Autism affects communication, behavior, sensory input and social interaction and there is no one face of autism.
I write this from the perspective of a professional who has worked extensively with children with ASD and have had long term relationships with them and their families. Most have literally grown up in my clinic and are like “my kids.” Many started with me at 2 years of age in our early intervention program and continued to take advantage of every other new and existing service that we offered. Thus, I also have a personal investment in the future of these young people.
Today, “my kids” are young adults, attending college, driving, and even dating. I am now preparing them for the workforce and in 2015 co-authored a comprehensive workbook: Autism: Attacking Social Interaction Problems; A Prevocational Training Manual for Ages 17+. Our evidence based workbook teaches the social skills needed to navigate effectively in the workplace. Additionally, we address personal development and daily living skills which includes a unit on safety with law enforcement.
On the surface, it appears that “my kids” have moved beyond the label of autism. They are socially engaging, smart, respectful, kind and good kids. However, despite their successes, we know that autism is a lifelong disability and their safety in our community is of paramount importance to me.
The Turning Point
On October 10, 2016, I was invited by actress, philanthropist and co-founder of the HollyRod Foundation, Holly Robinson Peete, to participate in a roundtable discussion on law enforcement and children with ASD. The goal was to strategize on solutions for better dialogue, awareness, de-escalation, and training tactics. The panel included Holly and Rodney Peete, whose 19 year old son has a diagnosis of ASD, 2 retired law enforcement officers, a producer whose family had been touched by police violence, and an attorney who was representing his client, Charles Kinsey, a behavior therapist who on July 18, 2016 was tragically shot by police in North Miami as he was trying to calm his client with autism. Interestingly, despite Mr. Kinsey’s full disclosure that the young man on the ground with whom he was struggling had autism, the officer claims to have been aiming for the young man and mistakenly shot Mr. Kinsey. Our discussion can be seen on “For Peete’s Sake” on February 18, 2017 on the Oprah Winfrey Network.
At the conclusion of a 2 hour dialogue, I was drained yet exhilarated. The discussion was very insightful and real and provided me with the important information shared from the perspective of each stakeholder.
My mind was racing as I was thinking of “my kids” and others with ASD and the need to create a safe environment, greater awareness, and training to minimize the risks for them and for law enforcement. I was left feeling hopeful that we could create a movement to encourage a dialogue that includes all Americans to join together as stakeholders to ensure the safety of all children as well as our law enforcement officers, most of whom are good people and committed to protecting and serving. I left there fired up, ready to do my research and mentally committed to develop a program in response to this need.
What is Being Done?
I discovered that many law enforcement agencies from North Miami to Philadelphia to Los Angeles are providing targeted trainings on how to safely deal with individuals with autism. Other agencies are combining trainings with hands on experience with children with ASD. Providing opportunities for law enforcement to become familiar with our kids and for our kids to become familiar with law enforcement is essential in this process. We know that in the absence of meaningful and positive contact we rely on stereotypes. These stereotypes can lead to fear which often results in unnecessary violence.
Call to Action
I believe that we all have a part to play to affect the change that we want to see. I encourage our schools to become more involved and take preventive measures to ensure the safety of their students by developing meaningful safety goals during the Individual Transition Plan (ITP). The goals should consider each student’s unique needs, behaviors and characteristics. Goals should not be a one size fits all.
For example, we have a 6ft. 5in. 14 year old “gentle giant” young man with ASD. He has become very curious about girls and most recently during our weekly social skills group, grabbed a female volunteer and aggressively embraced her. He continued to say “I’m a nice guy. I won’t hurt you.” It required 3 staff members, which included 2 males, to get him to release his grip. He looked embarrassed but didn’t have the ability to understand the impact of his behavior. After all, he was not trying to hurt her. He liked her.
Upon our debriefing, my staff and I shuddered as we thought about this situation in a different context with a very different ending. By the way, our “gentle giant” with ASD is African American, with raging hormones and the female volunteer happens to be young, blonde and Caucasian. Unfortunately, the reality is African American males are more vulnerable to negative outcomes when dealing with law enforcement then their white counterparts. The end result for our “gentle giant” with ASD could have been devastating.
As a professional, if I were a member of the ITP team, I could identify several meaningful transition goals for this young man which would include sexuality training, behavior intervention and social skills to teach him how to interact appropriately with the opposite sex. I would also provide information and training for his parents to facilitate carryover of these goals. Ideally, safety in our community with law enforcement should be the starting point for transition goals if a student is considering or being prepared for community integration and independence.
Lastly, if not already being done, we need to teach our students “how” to show respect for authority and law enforcement and the importance of following basic commands. We should also provide our students techniques and opportunities to practice “how” to remain calm and focused in intense and unfamiliar situations and to provide appropriate verbal responses within their capability.
The Role of Parents
Parents also play an important part in this process, especially since more and more teens and young adults with ASD are very vocal about their desire to “not have autism” and to be treated as “normal.” I hear this repeatedly from parents and some of “my kids.”
My advice to parents is quite simple and direct. You need to have “The Talk!” Why? It’s because your child needs to be safe in the community. As a parent, you have invested a lot of time, money, physical and emotional energy into helping your child become independent. You now need to help them to cross the finish line safely.
I encourage parents to make time to do the following:
- Discuss various “what if” scenarios with their young adults to determine their “real” level of understanding.
- Include perspective taking by asking probing questions such as “what do you think the police officer may think when you do or say….?
- Use law enforcement related happenings and occurrences in the media to make certain that they understand the antecedents, behaviors and consequences of the actions.
- Engage in frank discussions about any fears or anxiety they may have related to law enforcement. Our kids are connected to the world via social media which shapes and influences their thinking and behaviors in the same manner as everyone else.
- Reinforce the importance of listening and following instructions and help them to understand the difference between a request and a command. Some things are nonnegotiable even if you believe you are right!
- Have “The Talk”repeatedly to make sure that your young adult really gets it!
LA Speech Personal Action
As a result of this panel discussion, our center has partnered with one of the panelists, a retired law enforcement officer who founded D.O.P.E., De-escalating Officer Patrol Encounters, and the HollyRod Foundation to offer a weekend long, 2 night 3 day “Spectrum Shield” training for 12 young adult males with ASD, 18 years and older, at our 5 acre ranch just north of Los Angeles. We will also include members of the LAPD who have expressed an interest in participating. Our overall objective is to promote trust, greater awareness, and positive dialogue to ensure the safety of all children regardless of race, zip code, ability or disability.
Our weekend, sponsored by Xerox Corporation, will combine fun activities with structured learning thru group discussions, video modeling and guided instruction to simulate various police encounters. Special emphasis will be placed on the importance of the verbal and nonverbal aspects of communication and the critical role that gestures, eye contact, and facial expressions for example play in defining our intentions.
Our young adults will have an opportunity to interact with law enforcement in a relaxed setting that should ultimately reduce any anxiety associated with police encounters. It will also enable law enforcement officers to experience the many faces of autism spectrum disorder. This type of real life engagement can ultimately de-escalate a potentially deadly situation.
We have brought these kids with ASD a long way. We now need to invest just a little more to ensure their safety in our community.
For more information about our Spectrum Shield Law Enforcement training