Tag Archives: ABA

believe in your child (autism)

believe in your child
I’ve got to get out more. When we get out of our comfort zone and I talk to others, it gives me platforms to jump off. Ideas come pouring in from what I see and experience and I can’t wait to tell you all about it. However, with autism it’s difficult to leave this haven and my disease also keeps me tied down most of the time.

Despite those obstacles, we did leave the safety of our humble abode and spent time with others this weekend, and it brought to mind something I’ve thought of sharing with you before. I’ve shared bits and pieces of this idea, but it came to light again, and I feel it’s so important for autism parents and educators to hear. It can’t be heard too much, it’s something I think we need to be consistently reminded of. I know I do.

This past weekend we spent some time at my kids Grandma’s house. Now before I start, this is NOT a mother-in-law bashing session. My mother-in-law takes great care of our children, she runs an in-home daycare, and she’s always been the most sought after daycare in town. She takes care of our kids for a few hours during the school-week and a couple mornings and an afternoon in the summers. I’m grateful I don’t have to fear every time they go to daycare, I know they’ll be taken care of and I know no one will abuse Jeremiah.

However, after years of doing daycare, Grandma has turned into, well, a Grandma. She’s also never had children in her daycare who have significant special needs. This isn’t a problem for short visits, but when it seconds as the kids daycare it can pose some challenges. One of those is how she treats Jeremiah. She doesn’t treat him badly, but neither does she see what he’s capable of, and even when she does, her expectations aren’t raised.

It’s one thing when I hear about what she does with Jeremiah. (My husband, Justin, is usually the one to drop-off and pick-up the kids, so he relays the daily goings-on at Grandma’s.) It’s a whole other side of the coin when I see it in progress. At her house, Jeremiah is allowed to take his food into her room and eat his snack on the bed while watching a movie, he also has his cup of juice. There is always a movie on, when he enters her house she turns it on for him.

At our house we’ve worked VERY hard to teach Jeremiah to sit at the table when he eats. The food stays on the table, but he is allowed to come and go because he snacks all day since he doesn’t get proper nutrition from any food source, so he doesn’t get full at a meal. We don’t let him drink juice at home, we don’t have it in the house. If we did, he would be begging for it all the time, in the fridge, or crying at said fridge. But, it’s Grandma’s house and we draw the line at sugar loaded cereal, but let the juice slide.

So, when we were at her house this weekend, Jeremiah went to the cupboard and got some cereal, Grandma filled his bowl with it and sent him off saying, “You can take that in and watch your movie.”

I happened to be standing between Jeremiah and the “movie room” and he headed straight for the table instead of her room, and sat his bowl down. I grabbed a chair for him to sit on, and Grandma said, “Oh, he takes his snack in to watch the movie all the time.” I just smiled, or tried to, it was Mother’s Day after all. I told Jeremiah to sit down and he did.

Why did he take his bowl to the table when he normally takes it to the “movie room” when he’s at Grandma’s? Was it because I was standing there and he knows I’m his mom and I have expectations? Is it because he knew what those expectations were? Was it because he knew Mommy wouldn’t let him take his food on Grandma’s bed? I think so. He’s not dumb.

There was a time when Jeremiah couldn’t understand as much, and at that time we didn’t expect as much. Although we’ve always had expectations that he leave his food and drink at the table, along with some other guidelines.

As Jeremiah gains understanding, which is happening rapidly, we increase our expectations, always keeping in mind what he’s able to do.

This is what I want parents to do. I want parents to have reasonable expectations for their kids. I don’t want autistic kids to play video games and watch movies all day every day because “that’s all he’ll do.”
increase expectations for the autistic child

When Temple Grandin was young, she used to spin a ball that was connected to her bed, it calmed her, made her able to function in life. She could have done this all day, but her mother only allowed her to spin this ball for a certain amount of time during the day, she knew her daughter needed to move beyond the spinning ball, and she did.

Side note: I do feel that time for movies and video games is sometimes necessary for the autistic person. I used to feel so guilty when I would allow Jeremiah to watch more movies than I thought healthy for a child like him. Lia, the therapist who used to work with us said that maybe movies helped Jeremiah, made him calmer, helped with his sensory needs. She felt that sometimes he needed to focus solely on what was on the screen instead of everything in his world.

As in anything, there’s balance, and we need to be able to read our kids and understand what they need, but also what is good for them.

A couple years ago I watched a video of Rosie King at home with her autistic brother. Rosie has autism, but it’s more of an Aspergers type. It was a great video with excellent insight into how autistic people feel, but when they turned the camera on her brother, I was slightly bothered.

He came running out of the bathroom where he’d been taking a bubble bath, he was covered in suds. In another scene, he was kicking sand out of the sandbox, and in another he was climbing on the top of the entertainment center.

As for the climbing on the entertainment center, whatever floats in your family is good for you. I’ve learned that sometimes Jeremiah does this (only on the top of the stand, not the top near the ceiling like Rosie’s brother) because he needs a higher perspective, so we tell him to get down and take him out to the playhouse and let him climb there.

But running around the house dropping suds everywhere, this isn’t harmful, and if the parent’s okay with it, fine. But would this parent allow a non-autistic child do this? Well, probably, but it really releases any expectations on the child who needs to learn how to be in society like other kids. Different is fine, unacceptable behavior is not.

And kicking sand out of the sandbox? What happens when this child is upset and anywhere near dirt in the community? Will he kick it? Is his behavior isolated to sand? Would this behavior be acceptable when he’s in the sandbox with his friends?

We need to have expectations for autistic kids. No, they won’t be nearly as high as those for typical kids, but typical kids have expectations too. And I don’t mean that we need to be doing ABA forty or even twenty-hours per week. I mean expectations as the child is able. For example, we are working on potty training Jeremiah. We aren’t doing it the ABA way, and it’s going to take forever, but we work on it. We don’t expect Jeremiah to be wearing a pull-up when he’s thirteen.

We’re also working with him on pulling up his pants on his own, we would work on this some if he’d never done it before, but we have more expectation that he will learn to, and needs to work on it, because he takes his pants off and puts them on  when he wants to.

We may let our kids stand on certain couches or chairs, but not let them stand on others, and this is fine, as long as your child is able to learn to differentiate.

Both autistic kids who are verbal and nonverbal are capable of so much, often much more than we realize. Allowing them to get away with everything because we don’t want to teach them or we don’t think they’re capable isn’t always a good excuse (it’s a good excuse occasionally because I know we’re damn tired). But I know from teaching and working with my son who was thought to be a more severe case of autism, that these kids can. They can do so much more than we may ever realize, and they understand so much more than we ever realize. And often that CAN is connected to what we think about them and their capabilities – just like Jeremiah and his snack at his Grandmas, when I was there he knew the expectations were higher and he met them easily.

Are there things that you’ve assumed your child can’t do? Are there things you need to work on? What are those?

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when parents accept autism, the world will too

when parents accept autismApril is Autism Awareness Month and there are many autistic individuals and some autism advocate parents who would love to see that changed to Autism Acceptance Month. So as part of Autism Awareness/Acceptance Month, I want to ask what we’re doing to accept autism.

Accepting autism begins in the home of the autistic person, it begins with the parents and their view of autism. If you’re an autism parent, what is your view of autism, of your child?

*You can read about why I refer to those who have autism as “autistic” in the post It’s in a Word: Autistic vs. Has Autism.

Do you view your child through a positive lens? Or do you view them through a negative one, focusing on those “bad” behaviors (when your child is simply trying to communicate, or over or underwhelmed with sensory input), inability to make eye contact (some autistic people actually feel pain when forced to look someone in the eye), lack of social skills (or is it really different social skills)?

Something that can keep us from seeing the positives or potential in our child or from accepting who they are is Applied Behavior Analysis (ABA).

If your child’s in ABA, please know that I’m not judging you. I’m speaking honestly about how I feel based on my sons experience and how autistic adults who have sometimes suffered at the hands of ABA therapists feel. We are all on a learning path and the voices that have overwhelmed your experience are the ones that will largely determine the path you’re on.

Most of the time that path for autism parents is ABA. They jump blindly into it because everyone who has a child with autism seems to be doing it, and almost every therapist, teacher, or doctor you talk to highly recommends it.

I believe when ABA is extremely modified it can be helpful to a child who has autism. Some ABA therapists work under the guise of ABA when there isn’t much similarity so insurance will cover their services, however some ABA therapists still hold to the fundamentals of how ABA began. If you don’t know how it began, I encourage you to read ABA by Sparrow Rose Jones, an autistic adult who suffered under ABA. It’s important to know where this therapy stems from and if the therapy your child’s in has morphed from how it originated. Don’t worry, I know it’s overwhelming, and this post will help you know what too look for and be aware of.

ABA’s focus isn’t on the positives in your child, or respecting who they are as a person, the goal is to conform them into what the world around them sees as “normal” and it’s based on a “fake it until you make it” mentality. And what if your child feels very normal and doesn’t want to change?

I understand there are behaviors we need to help our children work through, however ABA doesn’t do this in a positive, encouraging way, it does it in a very negative way, not recognizing who the person they’re working with is, nor respecting what that person wants. ABA’s focus is to work the “bad” behaviors out of the autistic person, having no idea or care as to why that person is acting the way they are. Dr. Ivar Lovaas, the man who developed ABA says, “You have to put out the fire first before you worry how it started.”

“Autistic children are not allowed to be themselves, being forced instead, to learn how to pretend, never learning self-determination, never allowed to have an independent thought.” – Amy Sequenzia in her post, My Thoughts on ABA

“If you want something from me, if you want me to do something, respect who I am, respect my way of doing things, listen to me and allow me to disagree and to find my own way.” – Amy Sequenzia in her post My Thoughts on ABA

Autistic children need to be reinforced with positives just the same as non-autistic children. We need to find out the why behind behaviors (because behavior is communication), not suppress them because they don’t fit into society, or those behaviors bother us. We consider the autistic individual and find solutions they agree with, not ones that are forced on them.

Autistic children should never be forced to sit at a table for hours so they can learn colors, numbers, or letters, they need to learn through their environment (there’s a great example of this in the post More Perspectives on ABA). If an autistic child learns their colors and the stuffed bear is blue, there’s a good chance they won’t be able to correlate this with the outside world. The skills learned in ABA are often non-transferrable to the outside world because they aren’t learning through the environment.
autistic adults thoughts on ABA

I could go on and on about the problems with ABA, but I think this will be more helpful. Ask yourself these questions about your chid’s therapy, both in and outside of school and therapy:

1) Does your child’s therapy focus on the negative behaviors and not reinforcing the positives? How many positives are there to each negative?

2) Does your child have time to BE a child? If they’re going to twenty, thirty, or forty hours of therapy, the answer is no.

3) Would you accept this behavior toward a non-autistic child? I first read about this in the article, Would You Accept this Behavior Towards a Non-Autistic Child? It’s not a new concept, it’s something we should all think about when it comes to our children.

“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)

4) Is the goal of your child’s ABA compliance? A great article about this very issue is, No You Don’t by Sparrow Rose Jones. This article hit me hard. It’s extremely important to take a look at ABA from this angle. If everything is compliance and your child isn’t allowed to choose or say “No,” then there’s an enormous, life affecting issue going on. In No You Don’t, Sparrow spells out exactly what can happen to autistic individuals who are forced to comply with every request, and as a woman she speaks to the sexual abuse she’s endured because of this being ingrained in her psyche.

5) Are you allowed to be part of the therapy? If not, this raises a big red flag. Parents have the right to know what’s happening during their child’s therapy. Also, I feel very strongly that most therapy (meaning simply learning and guidance for our child) should be done at home. If the therapy you’ve chosen has passed the test, then you should be implementing it at home, this is where a large percentage of learning takes place, not in the classroom or therapy office.

6) Does your child’s therapist force your child to do things that are extremely difficult or impossible for your child to do? This is wrong for anyone to do. I’ve met ABA therapists who don’t know what making eye contact is like for an autistic person.

“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

7) Is your child given ample opportunity to learn through their environment? Does your child spend time with non-autistic children?

8) Is the therapist on the floor with the child, playing? Are they encouraging you to do the same? In my opinion some of the best therapy for children with autism is Floortime, a therapy created by Stanley Greenspan.

The world says we need to put our autistic children in ABA. Other autism parents. therapists, doctors, and teachers pressure us into doing ABA. They feel it’s the only answer, as if there’s a problem to be solved. Every autism parent seems to be doing it and if you’re not, you feel you’re probably the one who’s wrong. After all, they can’t all be wrong can they? But once you realize the source of ABA, and what it really does to your child, you may reconsider. Once you hear the voices of autistic adults you may realize ABA isn’t the answer.

“[Autistic adults] speak up because we know that our identity and our humanity cannot be taken away, something people who don’t share our neurology seem to believe can happen.” – Amy Sequenzia in her post, My Thoughts on 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.” – Sparrow Rose Jones (autistic)

When I was in the planning stages for my post More Perspectives on Applied Behavior Analysis, 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 parents of autistic kids really need to listen to those who’ve gone before our children (and I don’t just mean Temple Grandin). I’ve written some of their replies within the body of this post, and here are a few more:

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

“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

If you’re looking for other autism parents who don’t agree with ABA practices, you can read Emma’s Hope Book .
In the post, Tackling that Troublesome Issue of ABA and Ethics, Ariane writes, “One of the best arguments against ABA is Michelle Dawson’s article, The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA industry.  If you google Applied Behavioral Analysis you will see glowing reports of its efficacy for more than 30 pages.  I actually stopped at the 30th page only because I didn’t have time to continue.  The first book I read on the subject of Autism was Catherine Maurice’s Let Me Hear Your Voice which details how ABA saved two of her children’s lives from Autism.  (I use this language as it is the language employed by the author.)  Catherine Maurice also likens Autism to cancer and ABA as the necessary chemotherapy.  The whole acceptance model obviously is not employed when thinking in these terms, how could it be?  And perhaps this is the single greatest problem when discussing ABA.”

In the above mentioned article, The Misbehaviour of Behaviourists, it mentions how Dr. Ivar Lovaas (developer of ABA) worked with Dr. Rekers to remove homosexuality from children. This is how ABA began. I’ve heard of this throughout the autistic community, but this gives much more detailed information about how it came about.

The autistic adults I’ve heard speak (may be non-speaking, but use communication devices) about their autism feel it’s a large part of who they are, and to try to remove or cure it is an assault on their personhood. As I said earlier, there is no better way to learn about autism than from those who have gone before our children.

There is much more I have to say about ABA, you can read more of my thoughts in the links I’ve mentioned, My Thoughts on Applied Behavior Analysis and More Perspectives on Applied Behavior Analysis. I’ve also written an article for an anthology that will be published by a professor at Michigan University later this year (I can’t give away everything I’ve written in that article ;)).

Let’s accept who our children are so the world can accept them.
#AutismAwarenessDay #AutismAwarenessMonth

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look for the “why” – Autism & ABA therapy

look for the %22why%22 - Autism & ABA therapy
“One of the keys to allow children with Autism to thrive is to understand how they process information, and adjust their education and activities accordingly.” – Dr. Mercola

Sparrow Rose Jones, an Autistic adult, wrote a guest post for A Diary of a Mom  about Applied Behavior Analysis (ABA) therapy. I was shocked by what I read. Do you know how ABA began, what the concept was behind it? You may know the premise of how it was started, but stick with me because I will give you some ideas on how to help your child, and how to tweak ABA to help your child more efficiently and respectably.

Dr. Ivar Lovaas is the psychologist who established ABA. Sparrow wrote an excellent article containing in depth information on the therapy and goes to great lengths not to make parents who’ve supported ABA for their child feel guilty. In the article, ABA – by Sparrow Rose Jones, she says, “Much has changed, but this core premise of Lovaas’ work remains solid. ABA’s core belief is that forty hours per week of therapy geared toward making a child externally appear as “normal” as possible will “fix the brokenness” inside that made the child behave that way. ABA believes in an extreme form of ‘fake it until you make it.’” Shockingly, Lovaas said, “You have to put out the fire first before you worry how it started.” 

This isn’t how Autistic people should be treated. And, frankly, that’s not how to best help a child or adult who has Autism. This idea completely ignores their humanity. 

Consistently looking at what needs to be fixed in an Autistic child is a bombardment of negative thoughts.

We have to see the positives in the Autistic person if we’re going to instill in them a sense of worth.

How would we feel if every action of ours was looked at as wrong, and in need of change? What would that do to our self-esteem? If all you ever heard was that you needed to fix what you do every day, it wouldn’t give you hope, it would be quite discouraging.

I’ve talked about it before, but forty-hours of therapy for a child is beyond what they can or are should be made to handle. Children need play, they need down-time, they need to be a child. Emma (age 12, not positive of her age, but it’s close to this, and non-speaking) of Emma’s Hope Book says, “Autism is not a developmental delay, rather it is a different road entirely.”

When you can see that Autism is a different road entirely, your mind opens to such possibilities. Life is smoother, brighter, and different, but in a good way. It’s acceptance, but it’s acceptance that’s good. 

We can’t look at it from Lovaas’ perspective, “putting out the fire first before you worry how it started.” No, we need to completely shift that idea on it’s head. We have to find out why FIRST, then move on to help our child.

If we don’t have the why, we really can’t help them in a humane way.

So, why? Why is your child irritated? Why aren’t they focusing? Why are they jumping or spinning? Why are they chewing on their clothes? Why are they crying or upset?

Is it sensory issues (because most children with Autism have sensory issues). Is their tag bothering them? Do they not like the person who’s teaching them (because if your child is nonverbal, they can’t tell you how they feel)? Are the lights too bright? Are the colors in the space too bold? Do they need a chewie to help with oral issues? Are they crying because they’ve been through this routine hundreds, if not, thousands of times and are tired of it because it’s hard?

Watch your child closely, watch their eyes, listen to their sounds, watch their body language to find answers to these questions.

When you find the “why” it will be a beautiful present you can unwrap. Autism is so complex, but so amazing.

look at your child's abilites
Lia*, the Developmental Interventionist who came to our home to do therapy for a few years taught me so much about this. She really looked at the “why,” and although she’d been trained in ABA, she knew how to modify it to fit Autistic children. She was amazing. One day I called her, in desperate need of advice. Jeremiah had been standing on the t.v. stand, table, counter, and on the back of the couch. I couldn’t keep him down, consistency wasn’t working.

Lia, knowing Jeremiah has Sensory Processing Disorder said, “He’s probably looking for a higher perspective. He likes what he sees when he’s up there. Put him on something high that he CAN stand on, take him outside to the top of your play set.”

I was so relieved. Could this really be the answer? I have back problems and lifting a strong five-year-old down from up high was really wearing me out, plus that’s not what I wanted to do all day. I tried it, and after being consistent with it for a few days, he stopped climbing on furniture he wasn’t allowed on.

Other Autism parents can give us great perspectives too, depending on which ones we listen to. I was talking with one of those Autism parents the other day and she mentioned that they teach their son in the way he learns. Her son learns through music, so they use it to teach colors, shapes, etc. She said he sang words before he talked. I love it.

Then I thought about how Jeremiah learns, and that is through sensory. We found this out through working with Lia. Yeah, she’s done wonders for us and Jeremiah!

Everything we can possibly teach him with sensory, we do. Meaning, when we asked him not to touch the t.v., we put our hand on his and removed it gently, while saying, “Hands off.” We used hand-over-hand when putting puzzle pieces in their places. We used hand-over-hand while telling him to put his snack back in his cup. When teaching Jeremiah how to swing, I put his legs back, while saying, “back,” and moved them forward when saying, “forward.” (While using hand-over-hand, if he resisted, we let go after a count of two or three, it wasn’t done forcibly.)

I can’t tell you what a difference it’s made hearing Autistic adult’s perspectives, having a therapist that saw who my child is and what he needed, and not looking at my son’s disability, but what his abilities are and how I can help him best. It’s taken some really amazing teachers, and I have a long ways to go, but I’m eternally grateful.

I received a comment the other day on Twitter from a mom that was upset by another post I wrote. She said in part, “My verbal son doesn’t love Autism.” I’m really saddened by this. Sure, there are bad days with Autism, but aren’t there for all of us? For the most part my son is happy, and I don’t feel he would be that way if I was more negative. When I’m negative, he’s definitely not as happy. I’m a large determiner of how my son feels about himself.

Here’s a great quote from Jess at Diary of a Mom,

“And it’s funny really (in a not funny at all kind of way) that we talk so much about the inflexibility, the rigidity of those on the autism spectrum when really, isn’t it US, the so-called neurotypical population, who are stuck in this frightfully narrow rut of perception? Isn’t it us who insist that Autistics conform to our version of… well, everything? Isn’t it us who are really so rigid in our thinking as to be capable of believing that other ways of processing, thinking, communicating, experiencing are wholly invalid? That’s pretty remarkable (and, in its practical application, horrifying) stuff, isn’t it?”

I’ve written two other posts on ABA, My Thoughts on Applied Behavior Analysis, and More Perspectives on Applied Behavior Analysis.

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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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