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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