Tag Archives: therapy

more perspectives on Applied Behavior Analysis (ABA) – Autism

moreperspectivesonABA In my post My Thoughts on Applied Behavior Analysis (ABA), I said I would share more opinions on ABA from professionals, a very successful mother of an Autistic boy, and adults on the spectrum. So here’s the follow-up post I promised, albeit late because of a sickness that I can’t seem to overcome. In that post I shared that I had a gut feeling about ABA. I didn’t want my son in thirty to forty hours of therapy per week. I was very uncomfortable with someone forcing him to do therapies where I knew he would be pushed to his extremes and would cry and scream for hours. (You can also refer to the post Does Your Child Like Their Therapist, it was written for the parents of an adopted or foster child, but there are many key elements an Autism parent can take away.) I wasn’t okay with therapists who wouldn’t allow me to sit in on their sessions with my son either. Nor was I okay with my son sitting across the table from a therapist, repeating the same tasks hundreds of times . Mainly because he wouldn’t be able to maintain that type of intense focus.

I knew in my heart what I felt,

but there was always this external pressure because it seemed that all other Autism parents loved ABA. But, information began pouring in that pointed to the contrary. There were others who held the same opinions my husband and I did (yes, thankfully he felt the same way). Maybe traditional ABA wasn’t the best way. First came our in-home Developmental Specialist, Lia*, who’s been working with our son, Jeremiah, for two-and-a-half years. Lia’s not fond of ABA in the traditional sense, but will modify it drastically to fit the child, situation, and family. (You can read about one of the solutions she created for us in the first link in this post.) She was the first one who made me feel like we were going in the right direction. By the way, the specific conversation of ABA didn’t come up until about six months ago. I had formed my own ideas long before her and I discussed it. Second came Michael Emmons*, who we are so fortunate to have been put in contact with. He is a Professor of Special Education at a University, has over thirty years of experience in special education, and specializes in inclusive education, positive behavioral support, language, literacy, and communication. Emmons has observed Jeremiah on a few occasions, and we recently had the opportunity to sit down with him and chat.

One of my questions for Emmons was, “What do you think of ABA therapy?”

From the moment he began speaking, I knew we were riding the same wave. Know the feeling? Emmons said he’s seen children harmed by ABA. I knew my son had lost skills because of ABA, but children had been harmed? I sat in awe, listening to Emmons and his knowledge on the subject. Then he expounded. He once went into a situation where a girl on the spectrum had put three therapists in the hospital. Emmons was brought in and he stopped the ABA, he had her learning through her environment. Within a couple weeks, she was smiling, happy, and talking. Sadly, after Emmons left, the therapists went back to doing ABA with this young girl. After talking with Emmons, my spirit was buoyed. I was so grateful to know my opinions on ABA were validated, none the less by a professional who’d been engrained with ABA in school. focusonthepositivethingsyourchilddoes Then I came across an interview Steve Paikin from The Agenda did with Kristine Barnett. Kristine’s son, Jacob, has Autism. He’s fifteen-years-old, in college, and poised to become a future Nobel Prize winner for his work in Theoretical Physics (I wasn’t even sure I knew how to spell the word “theoretical,” let alone study it!). But that’s not the most important point of Jacob and Kristine’s story. When Jacob was two, Kristine was told he would probably never speak due to his severe Autism. Jacob was going through the traditional therapies for Autism, and Kristine noticed how all the neurotypical kids she worked with were having fun, but Jacob wasn’t.

She says, “It seems like all we were doing was focusing on what Jacob couldn’t do.”

When Jacob turned three, his teacher/therapist told Kristine to give up any hope of him ever communicating. At that point, Kristine decided to disregard traditional therapies and focus on what Jacob could do. Here is her interview with Steve Paikin on The Agenda: https://www.youtube.com/watch?v=Gxan95vKOrE Kristine has also written The Spark: A Mother’s Story of Nurturing, Genius, and Autism. Before I continue, I would love for you to read No You Don’t by Sparrow Rose Jones. It’s about how making a child comply (the goal of many ABA therapies) can create major problems, especially when that child is nonverbal. Remember that I didn’t search for any of these opinions on ABA, they all fell in my lap. If we want to look to prove just about anything, all we have to do is look hard enough, search long enough. In the midst of those three confirmations came statements from adults on the spectrum about ABA. One man had the opinion that ABA is why so many people with Autism develop Obsessive Compulsive Disorder. So, in the planning of this post I asked, “What are your thoughts on ABA?” in a social media group consisting of adults on the spectrum, professionals, and parents of people on the spectrum. The responses blew my mind. I came to the deep realization that us parents of kids on the spectrum really need to listen to those who’ve gone before our children (and I don’t just mean Temple Grandin). I’m only listing a small handful of the great insight that was shared by those who want to bring awareness and acceptance about Autism to the world.

ABA is like anything else…how it is executed goes a long way in whether it is successful.” – Rick Spencer

“I wish ABAs got more training in sensory issues.” – A. Creigh Farinas

ABA is nothing more than child abuse. If these same techniques were used against a normal child, all HELL would be raised.” (Referring to ABA in it’s true, pure form.) – Jeff Sexton (Autistic)

“As a teacher, I have been horrified by things that were done to children in my classrooms in the name of ABA. It came across as incredibly disrespectful of the human being in question.” – Joanie Calem

“I think the fact that the ABA community and the autistic adult community don’t tend to talk to each other is a HUGE part of the problem.” – A. Creigh Farinas

“The ideals taught are to teach a child to communicate the NORMAL way, to express themselves the NORMAL way, to function the NORMAL way…Typical children conform…ASD children adapt.” – Nancy Getty (Autistic)

“There is also a high price that autistic children can pay when ABA is practiced in such a way that compliance itself is a goal – abuse, physical/sexual/emotional.” – Patricia Gabe (She’s the one who referred to the post above by Sparrow Jones.)

“Applying therapies and asking someone to conform to a standard in a one size fits all attitude can strip a person of their natural strengths.” – Nancy Getty

Sparrow Rose Jones, and Autistic adult says about ABA, “What looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.”

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Emma’s Hope Book adds a great perspective on ABA therapy as well. Another post that is worth considering: Would You Accept This Behavior Toward a Non-Autistic Child? *Names have been changed to protect privacy. *My opinions above refer to “traditional” ABA therapy. I believe ABA can be drastically modified to help individuals on the spectrum. You can view my links to read more about those conclusions.


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my thoughts on Applied Behavior Analysis (ABA) – Autism

my thoughts on ABA
*The opinions expressed in this post are solely mine and based on our experience.

When the words “Your child has Autism” are spoken, most parents begin searching for ways to help their child. The psychologist offers advice, doctors suggest medication and therapy, friends refer to characters in movies or geniuses, other Autism parents recommend solutions that worked for their child. But one of the most common therapies you’ll hear about is Applied Behavior Analysis (ABA).

Autism parents invest tens of thousands of dollars per year on ABA, and many children spend thirty to forty hours per week in this intense therapy.

When I learned what true ABA is, I wasn’t a fan. Many therapists sit children down in a chair across the table and work intensely with the child. They will also focus on one skill such as putting a shirt on dozens of times in one session. This may work for some kids, but what about the ones who are constantly on the move, e.g. my son, Jeremiah? Jeremiah has learned to sit for longer periods of time, using fidgets* and routine, but working on something he’s not interested in (there aren’t many things at this time) would prove futile.

Some therapists use a reward system to get the child to perform, they may say, “After you put the puzzle together you may play with bubbles.” Jeremiah wouldn’t have been able to follow a similar direction until very recently. Even at this time he’s not quite there. Directions that are part of his daily routine are more at his ability level right now.

For example, because we’re working on “First/Then”* concepts at home and at school, he’s grasping what it means. I can take his doodle pad (which he loves and always has with him), and say, “Eat your snack first, then you can have your doodle pad.” But, to have him engage in an activity he doesn’t like, most anything besides puzzles, work boxes, peg boards, or coloring, you would have a meltdown with a crying, screaming child.

Frankly, I don’t want my child crying and screaming because someone wants him to learn his colors, look through a book, or get himself dressed. We push through on certain hygienic rituals like brushing teeth and taking a shower whether he’s crying or not, some things have to be done. The world can thank us later.

But, him crying and screaming because someone is making him learn to put his pants on or be involved in a group activity is not what I want for my child. I agree with constantly working with a child (with plenty of uninterrupted free play in between), we do this. We could work on education more, such as talking about colors and the like, however, we work on letters, shapes, and numbers on his doodle pad that he always has in hand.

Every time we get him dressed we walk through with words what he needs to do (in the beginning we used a lot of hand over hand teaching and less words), “Shirt over your head, arms in,” “Put your pants on, lift your leg, put your leg in.” It’s taken a while, but he is now helping to pull his pants on and has been taking them off for quite some time. 🙂

This is Jeremiah’s childhood and I want him to enjoy it like any other kid. I don’t want him miserable, working on the same skills over and over, hour after hour. Many ABA therapists will repeat the same skill over fifteen times in one session and I believe I’m being conservative with that number.

all children deserve a childhood

A family member recently asked me if ABA can work for some and not for others. Sure. ABA can produce skills, but in our case it hasn’t. We’ve used a modified form of ABA, but more on that in a bit. The true, follow the guidelines ABA has actually caused our son to lose skills. I’m sure many parents who stand behind ABA are shocked to hear this. You could say it was because of regression that he stopped using these skills, but he lost two, and they’ve never resurfaced.

When Jeremiah entered preschool he was using the sign language for “more” and saying, “maw” in the correct context. We shared this with his teachers, aides, and therapists, and most of them fostered his skill in the right way.

However, the speech pathologist did not.

Every time she worked with him, which was one day per week, she would do so at snack time. She would withhold his gold-fish crackers from him, and require him to use the sign for “more” and hand him ONE fish if he did. She would repeat this twenty or more times every time she worked with him. Because gold-fish crackers were highly motivating for him, that’s all she focused on.

Do you know what her tenacity resulted in? Jeremiah stopped signing and saying the word “more.” Completely stopped.

As for the modified ABA I mentioned, our amazing Behavior Specialist is the one who’s helped us with the adaptation. She’s not a fan of ABA in it’s true form either, but she will modify it for a child.

Here’s an example of modified ABA in a natural setting. We worked on something that Jeremiah was doing that we wanted stopped; he was hitting the t.v. during movies (sometimes because of excitement, other times seemingly just because). Lia* suggested we pause the movie each time Jeremiah got too close to the t.v. At first we pushed “pause,” walked up to him and gently moved him back the distance we wanted him from the t.v., and calmly said, “Scoot back,” as we moved him. Once he was a certain distance from the television, we pushed “play” and praised him, “Thank you for scooting back.”

As he learned what pausing the movie meant, we didn’t need to say anything (only praised when he did what was expected) because he moved back on his own. Lia also reiterated how important it is to…

focus more on his positive behaviors

…like praising when he does move away from the t.v. [ABA isn’t wrong, but I do think it’s taken too far], and when done in such a way, it’s taking childhood away from so many children.

The article, Would You Accept This Behavior Towards a Non-Autistic Child takes a look at how we treat those on the Spectrum. I highly suggest reading it and taking a look at how your child is treated at school, in your home, and in therapy. Ask yourself that question:

Would you accept this behavior towards a non-autistic child?

Next week I’ll be sharing some professionals thoughts on ABA as well as perspectives from adults on the spectrum and a mom who’s had a magnitude of success with her son (he’s fifteen, in college, and on track for a Nobel Prize) and hundreds of other kids with Autism whom she’s helped share their voice. Here is that article: more perspectives on Applied Behavior Analysis

*Jeremiah is 4 1/2 and nonverbal.

*Fidgets – sensory type tools used to calm a person. http://www.developmental-delay.com defines fidgets as tools that have
-Interesting tactile composition such as squeezable or spiky massagers
-Heaviness or pliability of the product
-Movement opportunities it provides our hands (can the child squeeze it?)
-Does Not make any noise, so it not a distraction to others
-Several different ones that are small enough to put in pockets”

 

*First/Then is simply having the child do an activity, and afterwards they get to do something they want to do. It can also be used to notify a child of an upcoming event. “First we are getting our pajamas on, then we will read a book.” Or if your child needs to leave an activity to do something they dislike, you can say, “First we’re going to wash hands, then you can play with the iPad.” Once learned, this phrase makes transitions easier, and works best if used in all their environments.

*Names changed to protect privacy.
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does your child like their therapist? (adoption/foster)

 

liketherapist

*These tips are for those who use therapy to help their children, I am not recommending that all parents take their children to a therapist.

In We’re Our Child’s Best Therapist, I wrote about how, well, exactly that, we’re our child’s best therapist. Why? Because we know them best and we are with them more. This doesn’t mean every family who has a therapist on board should chuck them out the window, that’s not what I’m saying. However, it’s imperative to take home what you learn in the therapy office and implement the techniques at home. You can ask your child’s therapist what they suggest you do to follow through.

They may have you ask your child questions in a different way, look for triggers that upset your child, or provide sensory activities for your child. (All of these recommendations are great initiatives even if they aren’t recommended by the therapist.) You are an essential component to your child’s healing, the more you can help your child outside of the therapist’s office, the better they’ll do.

You will also need to use your intuition. Intuition comes in handy throughout all aspects of adoption related issues. Always keep your antennas up when introduced to new advice coming in. Weigh it and decide whether you’re comfortable with what you’re being told (whether you’re reading it in a book, blog, or website, or hearing from a friend, relative, or professional), or what’s being done with your child.

Our experience with an attachment therapist taught me the importance of listening to my Mommy Intuition (Dad’s also have this intuition if they’re involved with their kids). Not all attachment therapists are like the one we met with, but it’s important to be aware of what the therapist is doing with your child. If, at any time you feel they are doing anything harmful (emotionally or physically) you have the right to stop it immediately.

This may be embarrassing for some of you, and you may be in a situation where you think if you wait it out, it will get better. Understand that you are your child’s voice, younger children may not say anything if they’re uncomfortable, or know how to express what they think or feel. If your older child comes from a neglectful or abusive background they may not say anything either.

The therapist we took my daughter to didn’t hurt her physically, but it two visits she made it very clear to Payton that her behavior was her fault, without even getting to know her. She told Payton how horrible she’d been to us. This is true, but Payton wasn’t acting out towards us, being belligerent, controlling, and manipulative because she wanted to, it stemmed from her early childhood, and blaming a child does not heal them.

The second therapy session took it even further. She didn’t physically harm Payton, but it was traumatic for her. I made a HUGE mistake that day. When you have a child that is so out of control, and you’ve worked with dozens of kids and had great success, you’re at a loss for what to do when it comes to your attachment challenged child. What I didn’t realize like so many others is it takes time + consistency + compassion + dedication + so many other ingredients. I thought this attachment therapist could help. I was wrong. There are therapists who can help hurting kids, she just wasn’t the one.

Another therapist, Scott Chaussee, had been available to us through the Department of Human Services. We’d only utilized his services on a couple occasions. (He’s the one who taught us the healing benefits of rocking and helped us with Payton’s sleep issues.) We hadn’t talked to him in a few years, but he called days after that therapy session that went completely wrong. Go ahead and tell me there’s no God and I’ll give you dozens of instances such as this.

Scott wanted to do a brain scan on Payton (Dr. Bruce Perry had trained him – how awesome is that?), and while he was in our home we talked about the attachment therapist. I wanted to get his opinion since he was familiar with attachment and was of the same opinions as Dr. Bruce Perry. In the end, he said that if someone doesn’t like their therapist, adult or child, then he doesn’t see how therapy can take place. He also said he feels play therapy works best for children who come from traumatic backgrounds.

On the first point, I definitely see what Scott is saying. If I was supposed to talk to, open up to, and receive direction from someone I didn’t like, therapy would fail. Scott is right, it’s the same for our kids. If our child doesn’t like going to therapy, what benefit is it? If the relationship between therapist and child is stressed, how will meeting with that therapist help your child heal? I don’t think it will.

You’ll have to be careful and use that intuition I mentioned earlier, because if you have an older child or teen, they may hate therapy, because, well they don’t want to be there. They don’t like talking and it’s hard for them to delve into the past where the pain thrives. You will need to decide whether it’s the child making a ruckus because they don’t want to attend therapy or whether it’s a founded opinion. Listen to your child and validate their opinions, they may not be correct, but they have the right to be heard if they can share them appropriately.

If your child attends sessions alone and they share what’s going on, and red flags are raised, talk to the therapist. Ask your child if they would mind if you attend therapy with them for a while.

It’s also important to remember that older children may have been to therapy while with their bio parents or foster parents. You may not know what that experience was like for them, in fact there’s probably a considerable amount of their past you don’t know.

We can learn about our children, we can help them by listening to them and letting them open up to us (you can read how to do that here). Help your children by listening to your intuition, and be in contact with the therapist at all times.

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we are our child’s best therapist

“After a hard days work, you don’t want to come home and be the therapist.” This statement was made by the father of an Autistic boy after a new therapy office specific to helping children with Autism opened up in our semi-small town.  This dad wanted the work to be done by therapists, but he was missing the bigger picture. We, the parents, are our child’s best therapist.

wearetherapists

Whether your child has Autism, attachment issues, Oppositional Defiance Disorder, PTSD, or any other disorder, we are the ones who know our child best and the ones who spend more time with them than a therapist does (or at least in my opinion, we should be). This means we have more opportunities than a therapist would.

If you have chosen therapy for your child, being present for any sessions will help you transfer what happens in that one hour at the therapist office to your home life. Pay close attention to what the therapist does and how she talks to your child. Talk to the therapist and ask questions, see what they notice in your child or in what your child does, and ask yourself if you see it the same way.

(If your child has attachment issues, not Autism, hang on, because I’ll get to that in a minute.) My son, Jeremiah, has Autism, so he has therapists who work with him at school. Although I don’t see those therapists (occupational, speech, developmental, etc.) every week, I make sure to keep communicating with them through emails, through the teachers, and occasional face to face conversations. This helps me know what they’re doing at school, so I can be working on the same strategies at home.

Jeremiah has outside therapies as well, he has speech, which we take him to, and a developmental therapist comes to our home. Either my husband or I are present for both of these sessions, and it has enabled us to incorporate consistency throughout the week. We’re able to take what they do in one hour, and multiply it exponentially in Jeremiah’s daily life. (That is if he cooperates, but I don’t stop trying – I might just be as persistent as my kids, they’re fabulous teachers.)

My daughter, Payton, has struggled with attachment issues, but she doesn’t attend therapy. We tried it for a couple sessions with a well known attachment therapist and it didn’t go well. Actually, that’s an enormous understatement, it went horribly wrong. I’m not recommending you avoid therapy for your child’s attachment issues, PTSD, ODD, mood disorder, or whatever they may struggle with, but the same holds true to what I said earlier. You are your child’s best therapist.

Taking a child to therapy once or twice a week and then hoping that’s enough won’t work. Our children need us constantly. How do you do that? You may think that would be overwhelming and that you don’t have time to maintain regular life and do therapy with your child. I understand! So what did we do? We have worked therapy into our lives so it became part of what we do every day, and now we hardly notice we’re doing it.

What does it look like? Well, I wouldn’t be able to write out everything we do, because it would take too long. Some of the therapy we do with our kids is so embedded in our lives that it’s difficult to weed out what we do that’s different from other families, because it’s normal for us, but I can try to list some.

Autism related in-home therapy:

  • Consistency in routine.
  • Using short sentences when telling Jeremiah to do something. Instead of saying, “Get off the table,” we say, “Get down.” While at the same time removing him from the table. We did this with EVERYTHING until he knew what we meant (meaning he followed our direction without us physically moving him), we then added more words to the sentence.
  • Using PECS (Picture Exchange Communication System). Using one word when eating, having snack, going somewhere until he understood what that word meant, then added more to make short sentences.
  • Using hand over hand for teaching how to do things.
  • Using floortime to help Jeremiah learn how to interact.

In-home therapy related to issues stemming from neglect, abuse, and trauma:

  • Consistency in routine.
  • Consistency in what we say and what we do.
  • Consistency with guidelines across all settings.
  • One on one, face to face time interacting.
  • Talking through situations and discussing (in short) what a better choice would have been, if there was a wrong one made.
  • Talk about feelings, naming feelings, and teaching how to handle them.

As I said, I haven’t even listed a small percentage of what we do at home, but this gives you an idea of what I mean by “therapy in-home.” These strategies do come easier as we develop ways to meld them into our lives. For us, most of it doesn’t seem like therapy, it’s our way of life. We don’t have the pressure that many parents feel of thinking we need to take our child to another therapist or another session. Yes, those can be beneficial in some instances, especially with Autism, but implementing what the therapists do in our home has helped our children make significant improvements because it’s consistent throughout all of their environments, and we spend more time with our children than any therapist can.

Some other helpful articles:
why consequences & rewards don’t work

words from the leery

A visit to the dentist office led to a short one-sided conversation about Foster Care, and for once, the words weren’t coming from my mouth.

My hygienist is, well, we’ll just say a little different, instead of “on the verge of psychotic.” In the twenty minutes I was sitting in her chair feeling as if I was on the opposite end of a therapy session, she mentioned the word “kill” at least twice. This stemmed from feelings in reference to an article she had recently read about Tiger Woods wife.

Supposedly Tiger’s ex-wife said that when she had bashed in his windshield with a baseball bat, she didn’t want people to think she did it in an angry rage.  My hygienist went on to tell me what she would have done if she were in the same situation, and it went beyond using a bat on a window. She continued with a story about how a girl had broken up with her son (when he was 11) the day after she had received gifts from him for Valentine’s Day. My hygienist said that she had wanted this girls name so she could “kill” her. It seems that she just has some anger that she needs to rid herself of, and it was obvious our little therapy session wasn’t working so well.

Soon she was talking about a friend of hers that is doing foster care. She said that her husband told her they could do foster care. She laughed and said that she would get the worst case, a child that sets fire to their bed while they are sleeping. I didn’t appreciate her view of foster children. Obviously not all of them are pyromaniacs, not all of them kill their caretakers, they are kids who need someone to love them.

I thought about telling this woman that she could do foster care and that not all foster children make it to the evening news. Then I remembered our previous conversation, or one-sided therapy session about the wrath she would love to expel upon others. I decided to keep my mouth shut.

Who knows, maybe she would be a great foster parent. Just not today.