If you feel like behavior issues are taking over your life, you’re certainly not alone. With disability often comes communication troubles that manifest into undesirable outbursts.

But rest assured, behavior doesn’t have to hold you hostage any longer. In this installment of Scoop Essentials, behavior specialist Deborah Lipsky shows you how to distinguish a tantrum from a meltdown and how to control and prevent both. A consultant who regularly works with schools and individuals to develop behavior plans, Lipsky also speaks from personal experience. She has autism and learned to self-regulate her own behavior.

Check out what Lipsky has to say and then click here to submit your own questions to her.

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Disability Scoop: What is behind behavior? Why do people exhibit extreme behaviors?

Deborah Lipsky: Every behavior is a form of communication. When a negative behavior is displayed, it means the person is experiencing frustration and a communication breakdown has occurred. Sometimes it’s the other person not understanding what the person with the disability is trying to convey or sometimes it’s the other person not understanding their disability.

Disability Scoop: When a person displays negative behaviors, how can you tell if it’s their disability talking versus behavior doing the talking?

Deborah Lipsky: It depends whether you’re dealing with a tantrum or a meltdown. A meltdown is when behavior is beyond the individual’s control. Things have been spiraling out of control. They are overwhelmed at the situation and they have no control. Generally with a meltdown the person is not looking for a direct response from you. Afterwards there’s often a sense of remorse and regret.

A tantrum is a manipulative behavior, a scheme for a person to get their own way. Once the person gets their own way, there’s often a sense of satisfaction. It’s really hard to distinguish between a meltdown and a tantrum because sometimes a tantrum can lead into a meltdown.

For true manipulative behavior there must be a consequence. There should be no excuse for any disability for behaviors like kicking, screaming and breaking things. Those are inexcusable and not part of anybody’s disability. It’s just poor anger management.

Disability Scoop: How can families go about setting up and implementing a behavior plan that works?

Deborah Lipsky: That’s a very common question. The number one problem with any behavioral plan is a lack of consistency. What we need to do is have a team approach so there is consistency at home, at school and anywhere else the person goes.

One of the problems with behavior plans is that we focus only on dealing with the behavior. Instead, look at the underlying causes of the behavior. Why is Johnny throwing a fit? If you can identify the problem and correct it, you can then deal with the behavior. A lot of behavior plans deal with the symptom and not the cause.

Disability Scoop: So what are the keys to making a plan that’s going to address the cause, not just the symptoms?

Deborah Lipsky: A successful plan is tailored to the individual. It understands and addresses the individual’s needs. If possible, it’s best if the individual can participate in creating the behavior plan. People with disabilities can offer a lot of insight but because they’re the ones with the disability, everyone else seems to know more about what they need than they do.

When addressing negative behavior, the idea is to extinguish the behavior and replace it with another behavior. Say for instance, Johnny has a meltdown when it’s time for gym. We want to find out why. Is it just that he doesn’t like gym or is there a problem because of gym? Maybe it’s too loud. So perhaps instead of going into a large auditorium to do gym, Johnny can go into a smaller room. Then, as he successfully manages the behavior, offer him some kind of reward, an incentive.

A good behavior plan takes the particular situation into account. What you would do in school, or at home or in a public setting may be different, but the underlying structure should be the same.

As a general guideline, if there is a true meltdown there should be no reward or consequence at all. If it is a behavioral tantrum then there should be an extreme consequence.

Disability Scoop: You touched before on the idea of a reward. Are rewards important?

Deborah Lipsky: Rewards can be something as simple as praise. “Good job. You did that great. You’re really growing.” It doesn’t necessarily have to be a physical, tangible reward.

The reward is a double-edged sword. You have to be extremely careful with a reward because it might come to the point where if you try to take the reward away, you have an even bigger problem. What happens with a lot of parents is that in order to get Johnny to go to school, they promise to take him to McDonald’s to get chicken McNuggets. That works great for the first few times, but soon Johnny is expecting and demanding chicken McNuggets every time he gets into the vehicle. And that’s not a good thing.

Whether or not you use rewards and how you do so really depends on each individual and their strengths and limitations.

Disability Scoop: What can you do if someone’s having a behavior problem?

Deborah Lipsky: A lot of times individuals will try to start calming themselves. I’m autistic and when I get nervous I start hand flapping or rocking. If you have an individual who’s engaging in some kind of self-stemming behavior that’s not hurting anyone, let them. If you try to stop them, it just adds to the stress and makes it worse.

If a person is having a meltdown, adrenaline is coursing through their veins. Unless you deal with the adrenaline, you’re going to have an explosive behavior, so you want to do whatever calms the individual down. It’s really important to know the individual.

One of the things that I recommend to include in behavior plans is that when someone has a meltdown, one person is assigned to them, not five people. When there’s a meltdown, everybody runs to get the principal, the school nurse, the psychologist. But it’s too many cooks in the kitchen.

Disability Scoop: What can you do after a behavior problem to calm the person and prevent a recurrence?

Deborah Lipsky: The first mistake a lot of people make is that immediately after the behavior they want to sit down to discuss it. The individual is going to need time to process what happened. I recommend waiting a day or so until the individual with a disability is in a better frame of mind and able to look at things clearer.

The whole point is to put power back into these individuals so they are able to identify when they’re getting upset. The goal is for them to learn to self-regulate their behavior.

Disability Scoop: How can you handle a behavior problem or meltdown that happens in public? What about ones that happen in the home?

Deborah Lipsky: Handle tantrums the same at home as you do in public. You have to set consequences and stick to them.

In terms of meltdowns, it’s different at home than in public because at home you have a lot more safety nets. If a person is having a meltdown at home, it’s best to let them go to their room to quiet down. But if they’re in public, that’s not an option and that’s where the danger comes in. Particularly in autism, a lot of kids and adults will attempt to run to a safe place if they feel threatened. It’s called bolting. And because they’re not cognitively aware of what’s going on, they can get into a lot of trouble by running into traffic or finding themselves in unsafe situations.

One of the things that I do when I’m in public is I wear something that identifies me as autistic and indicates what to do if I’m having trouble. Every individual with a disability should have their own one-page behavior plan with a list of things that can calm them down. They should take it with them and perhaps have it on file with the police department or with their school or anyone they come in contact with.

Disability Scoop: Are there certain behaviors that aren’t controllable no matter how hard you try?

Deborah Lipsky: In a meltdown the person is no longer able to rationalize anything and they go into an instinctual fight response. There’s nothing you can do to make those behaviors less demonstrative because the person has no control over them.

But in a tantrum situation, you can work to regulate the behavior. If the person starts kicking or hitting someone, help them to redirect that aggression to another physical activity like punching a pillow or going for a walk.

Disability Scoop: What about compromise and negotiation? When is it okay to compromise and when should you stick to your guns?

Deborah Lipsky: Compromise and negotiation may work, but you have to know the individual you’re dealing with. If you’re dealing with a teenager, compromise may not work because if you give them a little, they’re going to want a lot more. Likewise, if you’re dealing with an individual who’s severely cognitively challenged, compromise and negotiation may not work because often people in that population need things to be black and white.

Disability Scoop: There are families out there for whom behavior has become so dominate in their lives that they’re scared to do anything. What do you recommend?

Deborah Lipsky: Doing nothing is the worst thing you can do. If you’re having difficulties handling a behavior, seek help from professionals. Look to the case manager, the psychologist, the social worker and the speech pathologist. Get a team meeting together. Don’t be afraid to ask for help for severe behaviors that you cannot manage. If you don’t, you’re not doing your child any favors. You’re only making it worse. All aggressive behaviors that aren’t dealt with will escalate. They will not go away by themselves.

Disability Scoop: What about adults who still have behavior problems? Is it ever too late to control or change negative behaviors? How should you approach a teen or adult differently than a child?

Deborah Lipsky: It’s never too late. When trying to change behavior patterns, you have to modify to the age and cognitive ability of the individual, but the principles would be the same. To change a behavior you would look at what causes the behavior, what the person does and what the consequences of the behavior are. Offer a reinforcement or a consequence based on what would make a difference in that individual.

Disability Scoop: What resources are available if you’re struggling to deal with behavior issues?

Deborah Lipsky: The first resource would be the person’s case manager or their social worker. If the individual is not in the system, or if they’re not diagnosed and they don’t have an IEP or any type of school plan, the next best thing is to go to your local mental health center or go to the local department of human services. Tell them your situation and say, “I don’t know where to turn.”

Disability Scoop: What about medication? When should medication be considered and is it necessary?

Deborah Lipsky: Medication should never be the first line of defense in handling a behavior because you’re not handling it. You’re just subduing the behavior. You’re putting a band-aid on an amputation. Once you remove the medication, the behavior will return. That’s because medication doesn’t teach the individual to self-regulate.

That said, there may be individuals who can benefit from medication for shorter periods of time or who need medication to help control behaviors as the result of another illness. For instance, people with bipolar disorder may have some extreme behaviors in their manic phase that medication can alleviate.

But just putting Johnny on Prozac because he has explosive behaviors does nothing but ignore the problem. You need to find out why the behaviors occur. This is done through simple observation and by keeping a diary. If everyone who works with Johnny makes notes in a journal, you will see a pattern develop. Then you can take steps to prevent behavior problems and help Johnny learn to self-regulate. Medication is not a way to regulate a person. It just dumbs down the individual.

Disability Scoop: What about therapy?

Deborah Lipsky: Therapy is wonderful. Occupational therapists in particular deal with a lot of behaviors. They have all kinds of tricks and tools that individuals can use to calm themselves down in stressful situations.

However, one-to-one mental health therapy with a counselor or psychologist is not always as successful. People with autism, in particular, are disconnected from their feelings. When they have a problem, they don’t want to talk.

Disability Scoop: If you’re an individual with a disability who has trouble controlling emotions or behavior, what can you do?

Deborah Lipsky: One of the things I do if I’m having a sensory issue is try to remove myself from the situation. I might go to the bathroom just to quiet down. Or I’ll call a friend and have them talk me through it. I think a phone tree for adults with disabilities is crucial. It’s also good to have backup plans. Whenever I leave the house to go to the store or the airport or wherever, I have backup plans for everything. What if? I try to script out as many possible plans and scenarios before I leave home so that I’m prepared. The most important thing is to know yourself and know your limits so that you can plan accordingly.

Deborah Lipsky’s book, Managing Meltdowns: Using the S.C.A.R.E.D. Calming Technique with Children and Adults with Autism, came out this month.

Read all of Disability Scoop’s original series Scoop Essentials. Your Life. Your Issues. Your World.