I've been contemplating writing this diary for some time now and wanted to give back to the community as many of our Kossack's share their knowledge of science, art, music, education, and most decidedly politics. This diary may hopefully help families or individuals who have struggled with the behavioral challenges a loved one with autism can present. I do not yet have my BCBA but I have worked with individuals with autism for eight years now and have the knowledge of practical experience. I am not offering formal clinical advice in this piece but I have had a great deal of success in the field that has changed the lives of many individuals and families in a positive way.
Please join me below and I will present several strategies in which you may improve the lives of your loved ones or offer knowledgeable advice if you have ever encountered someone with autism but felt unsure of how to act.
First let me begin by saying that no two individuals with autism will ever be exactly the same. Autism has a spectrum in which individuals may be classified as high
What is Autism?
This is a great question that we have to address before we can talk about several commonly made mistakes, misconceptions, or improper reinforcement that occur when dealing with an individual on the spectrum. This section will be a little technical but I will attempt to explain each concept clearly before moving on. This information is bedrock and if you read nothing else but the below paragraph you will come away with a little more knowledge than you had before.
A person can be considered autistic when they exhibit deficits in three categories:
1. A qualitative impairment in social interactionsAre we done with the technical stuff yet? Well not really because in order to convey the amount of knowledge I'm going to have to explain a few things first.
Making friendships or being able to play with others can present a huge challenge to children or adults with autism. We learn a great deal of social skills through play and folks with autism will generally shy away from others unless prompted or with individuals whom they have developed a strong rapport with. That means the very first step towards getting to know a person with autism is gaining their trust and showing them that when you are around - great things happen. It can be a slow process and you may encounter behaviors that would make you aversive towards interacting with that person but please take it from me - don't give up. Many times problem behaviors are employed as a defense mechanism or escape tool to get out of having to deal with other people. Don't give up and you will ultimately win.
2. a qualitative impairment in communication
It can be hard to look others in the eye or do things like a thumbs up signal or other non-verbal communication that typical people take for granted. Communication can cause stress and can result in individuals shutting down, or acting out with problem behaviors. Many individuals with autism are non-verbal. That means that they do not speak but have to rely on other forms of communication. That can include sign language, a PECS system (picture board with symbols that show a desired person, place, or thing), gestures ect. Typically high functioning people with autism will have speech and better methods of communication but this is not always the case. There can be problems with articulation, the order of words, or being prompt dependent. Being prompt dependent means you have to rely on others to assist you in your communication or actions and will only demonstrate a given behavior when prompted to.(more on this later)
When communication is a problem it oft will lead to frustration and problem behaviors. Understanding the limits of communication or communicating with them in a manner that speaks their language is key. Express an interest in whatever activity is going on and pair yourself with things that the person likes. You may see an increase in their interest to communicate with you.
3. A restricted or stereotyped pattern of activities, interests and behaviors
You may have seen individuals that flap their hands, spin wheels on toy cars, scan the room out of the corner of their eyes, repeat the same phrase over and over, show perseverance on a topic (intense interest in a certain thing), or constant tapping or moving of a body part. These are all forms of stereotyped behaviors. The ways in which a person with autism can stim are incalculable and unique to each person. It is a method of self regulation that can give a calming or unknown sensation to a person. It is often redirected towards other activities as stimming can be reinforcing of introverted behaviors. What that means is that sometimes it can let a person slip further into their own world and shy away from engaging others.
Over the years there have been many forms of treatment for people with autism. For the purposes of this diary I am only going to focus on ABA or simply:
Applied Behavior Analysis.
ABA is a data driven method that teaches folks with autism through reinforcement, breaking behaviors or tasks into smaller parts and addressing each one. It is an understanding of the motivation behind a given behavior. Many people associate ABA with table top instruction where an SD (Discriminatory Stimulus or rather a command such as look, give me, show me, touch, point, or any vocal, gestural command paired with a prompt, reinforcement and error correction are given) While yes ABA does in many school utilize tabletop instruction it also asks people to examine the why when a behavior happens.
ABA asserts that people (not just those with autism) do things for four reasons:
How can I get out of doing this task? Ever procrastinate from something you have to do? Ever play a video game instead of doing your homework or reading a book rather than doing your chores? That is escape behavior. It is highly reinforcing to a person and is the basis for many addictive things. It is not always a bad thing but knowing when it is happening is important.
Let's say you are with a child with autism and playing a game or placing a demand on them that they may find uncomfortable. There is a plate of crackers on the table nearby and suddenly instead of continuing with the game the kid gets up, runs over to the table, and throws the plate of crackers on the floor. Your first instinct may be to scream "NO, or STOP, or Don't DO THAT but you should repress that urge. They may like the fact they got a rise out of you and it can increase the chance that they will do this behavior again. Unless the person you are with distinctly understand the concept of No then you have to be careful of how you reinforce. You may feel inclined to stop the game you are playing and clean up the crackers and the plate from the floor. Don't do that. You would be reinforcing the behavior of the child and just taught them that if they throw a plate on the floor they are going to get verbally reinforced (the yelling/verbal reaction) and that they just got out of the social interaction (the game).
The proper response would not to be address the behavior (the throwing of the plate) and to redirect the child back to the game using a neutral or encouraging voice. If a verbal redirection does not work then physically redirect the kid back to the task using the least amount of physical prompting needing. You always want to go from least restrictive to most. That means you can point towards the game, call their name, act like you are super interested in the game, have a powerful reinforcer (snack, music, whatever motivates them) on hand or praise other people who are doing the correct behavior. Never jump in and fully physically prompt a child unless you know that is the only way they will be successful in completing the demand.
If the problem behavior continues and the person attempts to escape again then switch activities to a less demanding task and THEN finish the game. When the game is finished then proceed to clean up the crackers on the ground.
Escape behavior can take the form of many activities such as hiding under a desk, running from you, spitting in your face, vomiting on you ect. Basically anything that gets them out of doing what they are supposed to be doing. Understand when this is going on and you will go a long way in building rapport with an individual with autism.
This is perhaps one of the most powerful motivators of behaviors in people. It is the reason social media can be so reinforcing to us, why we act out in school or other settings, or why we decide to run for office! Attention is powerful and should never be underestimated. Understand that attention does not have a negative or positive connotation associated with it. Any behavior that garners attention, be it positive (good) or negative (bad) can reinforce a behavior. Why do trolls troll on the internet? Because of the attention it garners and the perception that they have gotten a rise out of someone. That is the reason why the best method for dealing with a troll is not engaging it and starving it of attention.
Let's say you are with a group of children and one of them has autism. While you are paying attention to the other children the individual with autism pulls the hair of a little girl next to them. The little girl screams, all the children look, and you rush over screaming "STOP, LET GO!". Repress that urge. While you can not control the reaction of the other children, you can however control yours. Quickly and without making eye contact (eye contact can maintain a problem behavior) with the child move towards the little girl, see if she is alright and in a neutral tone redirect the children to another activity or the game they were playing. Do not verbally reinforce the hair pulling and do not label it. Saying "NO HAIRPULLING" may just increase the likely hood that the behavior will happen again since you just gave a great deal of attention to the behavior, gave the behavior a name, and showed the kid that if they pull the hair of another child they get a huge amount of attention. While you have to always ensure the safety of the kids you have to know how much attention to provide and to whom.
Instead focus on the type of behavior that you want to see by saying "We have nice hands." or "Let's keep playing". When a few minutes have passed then at that point (and depending upon the functioning level of the child) you can reinforce the group and the autistic child for proper behaviors. "I LOVE HOW YOU ARE KICKING THAT BALL!" "KEEP GOING GUYS!" I ADORE HOW YOU GUYS ARE PLAYING!!!" Be assertive, powerful, and BEHAVIOR SPECIFIC in your praise of proper behavior. If you like the behavior you are seeing - it can be walking, running, playing, talking, hugging, ect - anything positive - then you can reinforce that with editables (food) , tangibles (things), or verbal praise (which is ideal). Ideally you always want a person with autism to want to work for praise but that is not always the case. If a gummy bear works - use the gummy bear. If a song works - use the song. Be creative in your reinforcement and you will see huge results and problem behaviors due to attention will go down.
If you understand when attention seeking behavior is happening (and it can be good or bad) then you just learned a huge lesson in life.
Ever enjoyed any physical contact with another person? Looked forward to eating a certain food or longed for a bath? Well we typically love sensory stuff because it directly affects us. It is a huge motivator for us. However people with autism can experience deficiencies in sensory perception or experience aversion to certain textures, foods, sounds, or anything that has to do with their bodies getting input from an external source.
Let's say you are with an autistic child and they have a huge aversion to washing their hands. Every time they are in front of the sink they drop their entire body onto the ground, scream, cry, and generally have a fit. You may assume they are just being bratty and yell at them to get up and wash their hands. However it could be that the sensation of water feels a bit different to them or they have had negative experiences with water in the past. Dealing with behaviors like this can be difficult because you don't always know the entire picture.
First you have to turn the experience into something reinforcing. That can include pairing the experience with something the child knows such as a favorite song, or snack, and verbally praising every correct aspect of the task. If toileting is not the problem (as often is) and it is simply an aversion to water then you would introduce the water by sprinkling it on their hands and pairing it with a high reinforcer (food, music whatever the kid wants) For each step that they take towards washing their hands fully, such as turning on the water, getting the soap, and eventually washing their hands (duration is key - if they can tolerate 5 seconds - do 5 seconds and then increase it gradually the next time) reinforce heavily. Make a big deal. Throw a party. I can't place more emphasis on the concept of if you see a behavior you like. Throw a party. Make a big deal and be behavior specific. That way the kid knows you are throwing the party because they tolerated washing their hands for five seconds rather than because they turned on the water.
This is just one instance of how sensory stuff can be aversive but it can also be reinforcing. Some kids may love everything sensory related. Use that to your advantage. If you know that academics is a problem but they love playing with rice and beans in a container then pair the two of them together, offering breaks for playing with the sensory game when they have completed a task you want them to do.
Reinforcement should be fluid and is never set in stone. Sometimes people need more, sometimes people need less. The point is you have to understand the person you are with and what works for them. I reinforce myself by telling myself if I finish all of my homework then I can watch the new episode of Game of Thrones or MUD.
Understanding sensory motivations and you have gone along way towards understanding life.
Ever wanted something in life that is material? Pushed yourself to get as much money as possible? Bought yourself that new hybrid electric car cause you just had to have it? Well here is something obvious. People are motivated by material things such as money. Individuals with autism are motivated exactly in the same way if they have a desire for an item.
Frustration might occur when they are unable to request an item and figuring out ways in which to lower frustration and opportunities for an individual to gain access to the tangible things they desire is key. You may think you are doing a kid a service by restricting access to their favorite things but in the long run it can be counter productive. What you need to focus on is making sure there is a system in place that can reward the person for the types of behavior you want to see. This can take the form of token economies (ever had a star chart in 1st grade), a reinforcement schedule where you dictate First this (behavior/task) then That (Reward). Such as first bathroom/potty - then video. You need to have this system in place to cut down on problem behaviors. Often those with autism will use approximations for verbal requests that are not always understood or exhibit problem behaviors directly because they can't get the things they want.
Ever seen a 3 year old tantrum over not getting a cookie? Well imagine if you can't request the cookie verbally but say Kaa and no one knew what the hell you meant. Systems of communication will greatly reduce this. It can take the form of a PEC board, sign language, assisted communication device, gesturing, or vocal approximations. You have to know their language to be able to understand their wants. Anticipating the wants will lead to a great reduction in problem behaviors and lower the chance they will tantrum in the future.
Understanding that people want material things is a simple concept but again a rather key one in facilitating a relationship with an individual with autism.
How is Autism treated?
Over at Autism speaks they offer this bit of information:
Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs.Now there are a number of method in helping individuals with autism. I work in ABA and have outlined a few practices above and the reason why behaviors occur.
Intervention can involve behavioral treatments, medicines or both. Many persons with autism have additional medical conditions such as sleep disturbance, seizures and gastrointestinal (GI) distress. Addressing these conditions can improve attention, learning and related behaviors.
Early intensive behavioral intervention involves a child's entire family, working closely with a team of professionals. In some early intervention programs, therapists come into the home to deliver services. This can include parent training with the parent leading therapy sessions under the supervision of the therapist. Other programs deliver therapy in a specialized center, classroom or preschool.
Typically, different interventions and supports become appropriate as a child develops and acquires social and learning skills. As children with autism enter school, for example, they may benefit from targeted social skills training and specialized approaches to teaching.
Adolescents with autism can benefit from transition services that promote a successful maturation into independence and employment opportunities of adulthood.
However you may run into a few problems along the way.
Let's say you have been ignoring a behavior for a while and are confident it is not being maintain inadvertently through your reaction. The kid just keeps spitting in your face and you are determined to see this behavior go down. It however just keeps getting worse but you are paying little or no attention to the behavior.
This is called an Extinction Burst.
Things can always be darkest before dawn. The child may be learning that the spitting is no longer garnering the desired affect and wants to reclaim the attention it once did. Continue to ignore the behavior and with luck the extinction burst will be brief and they will no longer resume it. Extinctions are hard to accomplish but are rewarding when they are successful. The only time you are not to follow through with an extinction plan is when you notice a kid is engaging in behavior that is self injurious or harmful to another. I've been in a situation where I had to stop an extinction practice because the individual stripped fully, climbed on a table, and then defecated. It set us back but we eventually replaced the behavior through reinforcing other positive things going around and the individual eventually wanted to give up the behavior to be a part of all the fun stuff going on around them.
This is called: Competing behaviors.
You want the positive behaviors to shine and the negative to decrease. Therefor you need to make the positive activities or reinforcement far stronger than the willingness to engage in self stimulatory behavior, problem behavior, or withdrawing from social interaction. It is difficult but can go along way towards ensuring that a person with autism will engage with peers or generalize outside their environment.
What is Generalization?
Generalization is a great challenge to many individual on the spectrum. It means that once you learn a skill or task you are able to demonstrate it across people, settings, or materials. Suppose you are teaching a child their number from a card but the cards have a picture associated with the number as well. The child may become aversive to any number card that doesn't have a picture of a duck on it or they will refuse to demonstrate the skill with another teacher, or refuse to perform the task if they aren't in their specific seat (whatever). Generalization is extremely important. Having different loved ones interact and demonstrate the same activity goes a long way to ensuring that the person will be able to do it at any time in front of any person in any place. Many programs that work with autistic children lack generalization and it is imperative that you ask how you or others can generalize with your child.
I will be around for the next few hours to answer questions and chat. If you have a question that you want to ask privately you can send me a kosmail and I'll answer it to the best of my abilities. I have not covered everything as this is a great deal of information to convey but I hope my writing has been clear enough to help anyone out there has has struggled.