Early on, parents of a child with Autism take on many challenging roles. We instantly become not only a parent, but a 24-hour on-call doctor, on-site therapist, “behavior explainer” to the public, personal communication device, mind reader … The list could go on and on, but I’m sure you get the gist.
The lines between these roles are often times blurred and commonly fade over time, leaving parents assuming they must continue to “do it all.” Often times, we don’t realize that this can hinder our children from becoming more independent. As a parent of a child with autism, trust me, I know it’s all with good intent, of course.
Parents just want to help their children with autism have a less difficult life, as autism comes with so much more than any child should ever have to endure. Between all the therapy appointments, doctor appointments, evaluations, MRI’s and EEG’s, we want home to become that safe haven where no demands are placed on the child by anyone other than the therapists, especially in the early childhood years when these appointments and medical testings’ are usually at all-time highs.
Parents often don’t even realize they may be dealing with underlying guilt of having been the scheduler of all these overwhelming appointments. They usually have no idea that this is what creates a less independent child and are baffled by all the independence their child displays at therapy appointments and in the school setting but never at home.
Since becoming an ABA professional, I’ve learned there is something called an initiator and a responder. An initiator is a child that will attempt to have their needs met themselves or use some form of communication, whether speech or a Picture Exchange Communication System, to actively advocate for themselves to get their needs met. On the other hand, a responder is a child that relies heavily on others to get their needs met, typically using behaviors to get what they need. It’s quite simple. The initiator says “I want milk,” while the responder chucks their empty cup to the floor while screaming until someone gets them more milk. In the realm of all honesty here, which of those two examples do you want running around your house? My vote is the initiator!
While independence can be a scary thought for many parents, we need to keep in mind the example above. Independence does not mean your child will no longer need you, but it does mean they will begin to advocate for their own needs and display fewer behaviors as a result. This has the potential to create less stress in the home. When a child can initiate having their needs met, there will be less chances of having them respond in negative ways.
I’ll admit it; I’m guilty of playing the game of behavior mind reading and even reinforcing the likelihood of my child being a responder versus an initiator. I felt bad that my son couldn’t talk and was forced to try this challenging task with therapists for hours on end, so I never encouraged speech at home. Knowing what I know today, I wasn’t giving him a break at all. In fact, I was actually making both of our lives much more difficult.
Behaviors cause stress and when the parent is stressed, so is the child; especially when you have not taught the child to initiate communication and they cannot get their needs met because you don’t know why they are throwing a tantrum. Could you imagine having to scream, cry and yell for minutes, even hours, on end to get what you needed or wanted? Better yet, could you imagine always having to play the sometimes never ending game of “Tantrum Detective” in order to help your child? Trust me; it certainly does not have to be this way. I am grateful to say my days playing tantrum detective have long gone. When you work on creating an Initiator versus a Responder, you can kiss these challenging days goodbye, too!
So how can you get your child to become an Initiator versus a Responder?
Never “speak behavior.”
When your child starts pitching a fit, screaming, and falling to the floor, do not speak their language by giving them any type of attention. Instead, use the Count and Mand procedure by looking away, holding up your fingers to count to three, and prompting them to use their appropriate means of communication.
For example, if they want more potato chips and are verbal, but they are screaming and crying instead of using their words. Wait out the screaming behaviors while slowly holding up your fingers to a three count, and then say “More.” If the behaviors persist, continue to wait it out to a three count and prompt them again to say “more.” Once they do say “more,” make sure you reward them with giving the child more of the item requested and lots of praise.
TIP: You ultimately want to avoid saying “Say more.” This is the most common script I see in ABA therapy. The parent or therapist will place the demand “Say Hi,” for example, and the child will repeat the whole phrase “Say Hi.” At first the child may not understand that you are looking for them to say “more” which makes for a bit of frustration, but they will get it if they truly want more, so the demand “say” is usually not even necessary and is harder to remove from the learned phrase. Some people will accept “say more” because you want to encourage language of any type, but what most people forget is that it needs to be correctly spoken to avoid the child placing the demand in with the script.
Apply the brakes!
Take a clear inventory of the things you know your child can do, but doesn’t because you are always there to help. Stop doing them now. My personal theory on this is “If they can, they will. If they won’t, I won’t either.” This usually gets the child moving for me quite easily. Once they realize I have stopped helping or prompting them and have removed all reinforcing items, there’s no other choice but for them to do it to gain any access to reinforcers.
A common example of this is getting dressed. Often times, we get our kid’s dressed otherwise, we will be late. That’s just life, sometimes we run late. If running late means your child will get dressed on their own every day, then so be it, because independence is a step towards developing an initiator.
TIP: Notify everyone that you will affect by running behind schedule, I’m sure they won’t mind when you say, “I’m teaching my autistic child to get dressed on their own, we may be late today. This is a huge step for my child. We appreciate your patience.” If they know the reason you are running late, it always takes the edge off and they can adjust their schedules as needed without any worries.
“Put reinforcers in the CAR.”
When attempting to create a responder, reinforcers should always be: Contingent upon behavior, Administered immediately after any reasonable attempt to communicate, Related to the desired behavior in a direct way. This means that we want to give the child access to the desired toy or activity based on their behavior. If they respond appropriately to the instruction, or give a good try, we reward them by giving them the item they asked for or an item related to the instruction they followed.
The phrase “Put reinforcers in the CAR” (Contingent, Administered, Related) helps me remember because I personally keep reinforcers in the car anyway, such as the iPad, books and small toys, to ensure happy kids during any drive. I don’t know any parent that doesn’t do this, so I’m certain this should be easy to help you remember, too!
TIP: You never want to reinforce behaviors, so make sure your child is no longer screaming or crying when they speak the word. If they scream “I want milk” or throw the PECS picture of “milk” at you. You will want to continue the Count and Mand procedure, as giving them the reward before they have given the appropriate, calm response will naturally reinforce that it’s ok to scream their language, cry while speaking or throw pictures at you. This is definitely something you do not want to reinforce to avoid it happening on a regular basis. Just be aware of what you are reinforcing.
We live in an impatient world of high speed gadgets and over crowed schedules, patience does not come easy to us. Get into the habit of counting to 30 in your head before providing a prompt or assistance of any kind. This will reduce the risk of becoming heavily prompt-dependent and give the Autistic child time to process the demand. Autistic children often become easily overstimulated and need a full 30 seconds or more to process information in even the simplest settings thanks to auditory processing issues. As they say, “Good things come to those who wait,” so remember to slow it down and try not to be so “prompt ready.”
TIP: In the world of ABA, there is a Prompt Hierarchy that we refer to that helps us deliver the least intrusive prompt. We always want to use the least intrusive prompt to ensure we do not use the most intrusive prompt when it is not always necessary. Remember to always count to 30 in your head after using a prompt. As stated above, it takes time for most children with Autism to process the demand.
Next week: Learn more about the Prompt Heirarchy!
-Michelle O’Neill, AHSS Lead Skills Coach and mother of a child with Autism, plus two!