Friday, April 7, 2017

If Not ABA, Then What?

Maxfield Sparrow
unstrangemind.com

Family | Happy Birthday to Mammy
Photo © Aikawa Ke, Creative Commons license.
[image: Taiwanese mother and child playing together
in a sand box, and smiling for the camera.]
In the two and a half years since I published my essay on ABA therapy, and it was republished in the book The Real Experts, I have been asked this question more than any other: "You’ve convinced me to avoid compliance-based therapies ... but what else is there? We are not coping well in my house. What can we do?"

I have spent the last couple of years answering that question again and again, on an individual level. I knew I needed to write this essay answering that question, but life kept getting in the way. Still, the question kept coming, from people all over, and I knew I could put it off no longer. So here we are, dear reader, and I hope that I am able to offer you some help and hope with these words.

You are a parent who is struggling and feeling desperate, but you’re firm in your resolution to avoid subjecting your children to dog-training techniques and spirit-crushing compliance methods. So let’s talk about your alternatives for one of the most common situations in which families tend to end up bringing ABA into their lives: aggressive behavior.

“We’re afraid for our lives!” I’ve heard this from so many parents. Their children lash out and hurt others. The children grow older, bigger, and stronger and continue to lash out. The family fears for their lives. In some cases, the police get involved and the children end up with involuntary commitment, facing criminal charges, or even injured or killed in extreme cases.

No one wants this for their child! No family wants to be forced to choose between fear for their child and fear of their child. It’s small wonder that families end up choosing ABA, and medications that serve as “chemical straitjackets.” Situations can get scary fast, and families can feel helpless.

But there are many things you can do to keep everyone calm, keep situations from escalating, and even keep situations from happening at all. I am not going to re-invent the wheel here, because so much great advice has already been written and published on dealing with aggression. Instead, I’m going to curate the best advice I’ve seen online through the years. (That means this essay requires you to do a lot of extra outside reading, but it also means you are about to get so much more great advice than I could fit into the few thousand words of just one essay.)

I’d like to start with the excellent aggression checklist from We Are Like Your Child. It is a great list of things to consider about your child’s environment and health, in order to understand the source of the aggression.

I would like to add that the aggression will not always appear right next to the triggering event. What do I mean by that? Let me explain with an example. Maybe reports from school say that your child is well-behaved at school, but you are noticing a lot of aggression at home. You have examined all aspects of your home environment and just can’t figure out what is triggering the aggression. You’ve tried asking your child to help you figure out what’s wrong but they haven’t yet developed the ability to communicate the problem clearly.

It is possible that the aggression trigger isn’t happening in your home at all. Maybe there is bullying on the school bus, or maybe the school is using some of the techniques that you have been warned about in my ABA essay, or the We Are Like Your Child checklist.  Or maybe the trigger is something else entirely, but still something not in your home.

So why is your child or teen or young adult being so aggressive at home instead of in the place where the triggering problem is occurring? The answer: because your child feels safe at home.

The problem is like a flame under a boiler and the pressure is building in your child. But if letting that steam escape is too dangerous—say, for example, it leads to take downs, restraints, seclusion rooms, or worse—your child learns to hold the pressure in for self-protection. But there’s only so long a person can do that: as soon as it’s safe, the steam explodes out, in the form of aggressive behavior. This is why it is so important to look at every part of your child’s environment when you’re trying to figure out why aggressive behavior is happening.

Sometimes aggression is the only way your child has to communicate that something is wrong. ABA might be able to stop the aggression, yes. But at what cost? Do you want your child to be trained to put up with pain and abuse? Of course you don’t! That was a ridiculous question. But it comes with an obvious answer: don’t use behaviorism to train your child out of aggression. Ferret out the source of the aggression and remedy it. It might be something in the environment, it might be the way someone is treating your child, it might be a health issue your child is struggling with. Whatever it is, play detective. Figure it out and help your child.

In The Case For Backing The Frick Off at the blog Love Explosions, Beth Ryan explains why she advises reducing Autistic kids' therapies and interventions. For some people this will be counter-intuitive. Parents are usually encouraged to believe that more problems should be addressed with more therapies and interventions. But Beth suggests more accommodations and respect instead and I completely agree with her.

Beth talks about learning how to handle her daughter’s hair in ways that are less painful and more pleasant, thus reducing outbursts. ABA would work to train Beth’s daughter to put up with the pain and misery without complaint. Beth took the much simpler route of learning how to be more gentle and touch her daughter’s hair in ways that weren’t so painful and awful. “I spend a lot of time thinking about what sets Evie off in any way. And I try my very best to support her by accommodating her whenever I can.” It’s such a simple solution, really: figure out what sets someone off and avoid that.

Sometimes avoiding a trigger can be easy. Other times it can be quite involved. In my book, The ABCs of Autism Acceptance, I wrote about a parent whose Autistic daughter would have a meltdown if someone used the stove. Careful investigative work never revealed what it was about the stove that bothered the girl, so the family just stopped using it. They would cook using the microwave or crock pot, serve cold lunches like sandwiches and salads, or order delivery food. It was an unusual solution that required the entire family to adjust, but it worked and resulted in a happy and secure child who was not experiencing overwhelming anxiety leading to aggression.

When you accommodate your child, you may encounter resistance from family members, extended family, friends, neighbors, professionals. People might tell you that you are coddling your child or catering to them. Stand firm. Your child or teen or young adult is not misbehaving on purpose. They are trying to cope with a world that is a sensory nightmare, and anything you can do that increases their sense of stability and safety is a loving gift to them.

I hope you are beginning to see that the aggressive behavior is coming from something that is painful and difficult for your child. You want to stop the aggression because it frightens you, but you really want to stop the aggression because it is coming from a place of great suffering and you don’t want  your beloved child to suffer.

Beth has another really helpful essay on Love Explosions, Caregiver Burnout. She opens by explaining how much she hates that phrase, because it seems to imply that Autistic children are burdens that grind down their parents. But she also finds that incendiary phrase a great jumping-off point for discussing how her family have chosen to help everyone live together in harmony, feeling safe and loved.

Among the very valuable advice in Beth’s essay is the caution that everyone absolutely must get enough sleep. I have visited with Beth’s family, and saw exactly what Beth describes in her essay. Her daughter gets good sleep and Beth keeps a monitor turned on so that she can hear the moment her daughter is awake and ready for Beth to come help her get her day started. Being well-rested is crucial. I have watched other Autistics completely fall apart and end up hospitalized simply because they weren’t getting sufficient sleep to be able to self-regulate.

An important side note about health issues such as getting sufficient sleep, or addressing digestive troubles like heartburn, IBS, etc: you will run into doctors who try to tell you that it is hopeless to address your Autistic child’s physical issues and that you should just give up. I know because not only do so many parents tell me that they have had to fight with doctors in order to get their child’s health needs addressed, but I have had to fight with doctors as well to get my own needs met, despite being a fairly articulate adult. There is a bias in the medical community that you will find yourself up against, a bias that says that Autistics just suffer, we just cry, we just behave strangely for no reason, and we’re all like that and there’s nothing anyone can do about it.

You have never given up on your child.  Don’t let the doctor give up on your child either!

If your child needs help with sleep, pardon the pun but don’t rest until you get that help for them. If you suspect your child is experiencing heartburn, food allergies, digestive irritation, etc. keep the doctor on task until the problem is investigated and solved. A lot of aggressive behavior happens because it is impossible to self-regulate when exhausted or in pain.

I’d like to round this collection of information out with four articles by four different authors, previously published on Thinking Person’s Guide to Autism (TPGA). I consider TPGA a great resource for all sorts of needs, and the articles are written by a mix of parents, caring professionals, and Autistic adults, providing a rich and full view of Autistics and our needs throughout the lifespan.

In Autistic Insights on Meltdowns, Aggression, and Self-Injury, Brent White and Lindsey Anderson talk about important guidelines including staying calm, protecting the Autistic person who is in crisis, offering options, and slowing everything down. When someone else is being loud or aggressive it can be hard to stay calm, but it is so crucial. If you allow yourself to get anxious and emotional, too, it will amplify what is going on with your Autistic family member. If you can remain calm and slow and steady, you will be offering yourself as a rock of stability and safety that will help your child to bring themselves out of their stressful state of being more easily.

In Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices, Dr, Clarissa Kripke offers sound advice based on her experience as a doctor and as a mother of an Autistic teen. You’re already familiar with much of her advice by now: look for medical causes for behavior changes, foster communication, help keep caregivers well-rested and supported with respite as needed. Something that is implied in Dr. Kripke’s essay but stated explicitly in Beth’s earlier essays is that respite is not just some kind of medical remedy meant to make life easier for a parent or other caregiver. Everyone in the family benefits from taking breaks from each other.  Your Autistic family members especially benefit from time apart.

So many Autistic people are “emotional sponges,” as Shannon Des Roches Rosa puts it. That phrase really resonates with me because I have used those exact words to describe myself, even long before I was informed that I am Autistic. Parenting is highly focused work that takes a lot out of a person. Parents—parents of all children with all neurologies—need to take breaks and have “me time” to rejuvenate and return to parenting refreshed and rested. But we Autistic emotional sponges also need time away from the intense emotional energies of others. Spending time with other family members besides parents, or other trusted adults, can be restful and renewing for Autistic children as well.

I also know families with more than one child who take time regularly to spend one-on-one time with each of their children, away from the other children in the family. This special fun time focused just one one child is very important, too. Brothers and sisters need breaks from each other.  Parents need breaks away from their partners, if they have them. Make sure everyone in your family is getting their needs met as far as special time with individual family members, “me time,” to be completely self-focused, and restful break time from the entire family. Togetherness helps a family grow in love, but sometimes too much togetherness can stunt that growth or even shatter a family apart.

Like previous essays mentioned in this essay, Dr. Kripke’s essay also talks about changing things in the environment that are triggering meltdowns, but adds advice about the differences between meltdowns and tantrums and suggestions about how to approach the two differently. A meltdown absolutely requires support and never punishment. Punishment is inappropriate for a tantrum as well, but the support looks completely different because a tantrum is an attempt to affect the behavior of others while a meltdown is an expression of complete overwhelm and is not driven by intentions of any sort.

The second half of Dr. Kripke’s essay is a marvelous capsule guide for surviving meltdowns.  You really must read this! Dr. Kripke offers concrete step-by-step instructions for developing and implementing an action plan to cope with aggressiveness that comes from overwhelming anxiety.  I can’t even begin to do it justice in a short summary. It is simply required reading for anyone who loves an Autistic person.  I can’t begin to express how valuable Dr. Kripke’s words are.

The last two essays came from a workshop on Autistic aggression and meltdowns and the third essay I recommend is from the same workshop as well. Shannon Des Roches Rosa provided an overview of the workshop's topics after introducing the three other speakers, and that overview is a valuable short essay in its own right—including some great checklists of things to look at in the environment that may be difficult for Autistic people to cope with. Many things on the list are obvious to us Autistics, but maybe not so obvious to the non-autistic people in our lives. Things like perfumes or flickering lights may be nearly invisible to most people but can be overwhelming sensory assaults for us.

The last essay I want to leave you with is by Brenda Rothman and is titled Adult Responses to Autistic Children Lead to Escalation or Calm. Brenda Rothman is exactly right when she decribes how adult response choices can either help keep a child calm, or escalate that child into meltdown. I can tell you that this is not just true with children: As an adult, people’s responses to my anxiety have thrown me headlong into full-blown meltdown, while calm responses have pulled me out of meltdown even after I passed the point of no return.

Do not underestimate the effect that your attitude and words have on your child.  I understand that if your child hits you and Brenda and I tell you that your response is what sets your child going even harder, or helps your child reel it back in and calm down, you might feel like we are “blaming the victim”—but Brenda explains so well in her essay why that is exactly the wrong way to approach Autistic aggression. You are not a victim. Your child’s aggression is not a personal attack.

Rothman reminds her readers that their children are not trying to hurt them. The children are disoriented, anxious, and suffering. If you think of yourself as a victim of your child, you will not be able to foster the sort of calm response your child needs to help them regain self-regulation and calm.

Brenda Rothman offers some excellent advice for how to stay calm, how to respond to your child in distress, and how to address aggression with grace and love. You don’t need ABA for your child’s aggression. In fact, ABA is only likely to “work” in these instances by increasing but suppressing your child’s level of trauma and suffering. Whatever caused your child to suffer so much that they lost control is still causing your child to suffer, but if the ABA has done what it set out to do, your child has lost the only channel of communication available to them for expressing their pain and suffering in hopes of getting help with their distress.

Don’t take away your child’s voice; take away their suffering. ABA is a cruel response to aggressive behavior. Meet that behavior with love, calm, support, and an investigative search for the source of your child’s struggle instead. Learn why your child is getting so stressed out that they are frightening the people around them, and help make your child’s life calmer, safer, and happier. That is what you were hoping ABA would do, but I am here to tell you that ABA cannot do that. It is your role as a loving parent and you don’t need a behaviorist. You just need the love and compassion you already have for your beautiful child. Dealing with aggression really is a situation in life where love conquers all. Go forth now and vanquish suffering with curiosity, compassion, and calmness.