Have you ever known someone who only learned things the hard way? Oh, don’t lie. If you have not, you are one.
Let’s begin with the basics:
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Man Cub. Non-verbal, autistic, built like a linebacker.
Silly Momma. I am the empress of pink.
Little V. Autistic, nine-going-on-sixteen, future comedienne.
Is that the way my sanity went?
Me. Still wondering why I have hair and do not drool.
Remember when I was talking about the little ones getting gobs of therapy? How’s that going? Let’s see if I can pull this off without expletives. (Insider tip: Do not put money on it.) Be aware: This is a rant based on personal experience with indoctrinated individuals who are being paid based on their ability to graph their own success in concert with my children’s demonstrably ongoing failure.
58 hours
Between the two, the children should be getting 58 hours of therapy. Until a few weeks ago, we were nowhere near that number. In fact, it had been almost three months since the company being paid to provide the therapy has managed more than 9 hours per week per child. Beginning 01 November, the number of hours fell to 12 hours per week, six per child- at least on paper. You see, if no one appears to provide therapy, there is none.
Now, the children are getting more therapy. In fact, therapy is nearly every day. The hours are up to nearly 40 hours per week. Still not where we need to be but an ocean better than where we were.
Fallout
Do you like more than 40 hours per week? Imagine being a cognitively impaired child who has that many hours of responsibility.
In my jet-set existence, my children having something to do for more than 40 hours per week is not beyond their scope. What fallout could there possibly be?
500% increase in maladaptive behavior.
What? Simply put, when a child does not have the capacity to verbalize their (frustration, lack of understanding, sense of futility), they lash out. This ranges from a random throwing a toy (at someone’s head… accurately) to lying in the floor with tears streaming over cheeks.
It would stand to reason ABA therapy would be the answer. It used to be called behavior modification, but too many people thought applying Pavlovian techniques to humans was demeaning. Silly people. When behavior is bad, it needs to change. Seems like we are on the right track, no?
No.
See the “A” at the end of ABA? It stands for analysis. The main difference between zapping someone with an electro-convulsive 450 volts and ABA therapy is the therapists are supposed to analyze why the behavior occurs in order to orchestrate better reasoning and subsequently better behavior.
Are you scratching your brain yet? Rub some hydrocordisone on it, and I will explain the conundrum.
In order to adjust maladaptive behavior, one must see examples of maladaptive behavior. In short, one (therapist) must push the consumer (child) to the point where maladaptive behavior occurs. In a controlled environment, this is plausible. The consumer is not in a position to hurt self or others, to a large degree. Once the behavior occurs, design a reinforcement schedule to reinforce proper behavior. Sounds simple, right?
Maybe
There are a number of places where this process can go awry. The most egregious one is when the therapist decides prior to therapy all maladaptive behavior is merely a symptom of autism.
In fact, autistic people have the same feelings non-autistic people have. If you check the rolls of anger management classes across the United States, you are going to encounter a majority of non-autistic people. All of them have had their bad behavior identified. They go to classes to learn there is a better way of coping with anger and frustration than smacking their neighbor. If their maladaptive behavior is not a symptom of autism, why would anyone assume (<<<warning) maladaptive behavior is simply a symptom of autism?
ASSumption
When executed properly, ABA programs are different based on the consumer and therapists and provide positive behavior modification which includes learning social interactions and self-care. Without the intervention of a caregiver, ABA travels a clinical path which railroads the consumer’s abilities until they can be performed on demand in a vacuum, in other words, when a complete stranger can tell the consumer to perform a task and the consumer complies with the demand without any maladaptive behavior.
Was that too passive? It teaches blind compliance. It assumes the consumer has no ability to think critically and must be taught to ape appropriate responses. Can someone please pass Pavlov’s dog a napkin?
Can someone explain who really has the maladaptive behavior? Which assumption is the most atrocious?
Thank you for bearing with me in this series on why professionals shoot themselves in the foot.
Hashtags: #whoisincharge #autism
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Binky
/ December 12, 2013I have had no experience in this area, but I do know that some professionals do not appreciate being questioned, and to do so is viewed as a personal attack. We are supposed to passively accept whatever they dish out, no matter how inappropriate it may be for our particular case.
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Red
/ December 26, 2013Hence why I have this listed in my letter to Santa.
Valentine Logar
/ December 15, 2013Look, not one expletive. I am impressed.
The problem is, my opinion only, they ‘professionals’ haven’t been beaten down into clear understanding yet. They have only their books to inform them, not true human beings with real feelings, intellect and responses.
There is nothing that beats experience.
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Red
/ December 26, 2013Not a single thing. xxx
Phil
/ December 16, 2013Red,
I can’t add much here but I think I can understand your situation and you obviously know you are well within your rights to rant.
Being the eldest of 7, my second to last sister has Aspergers syndrome.
It’s too long to go into but in short, when she was younger, she used to run a lot, whenever she could she would run out of cars into the road, missing cars, lorrys and trucks etc. and her elder siblings, especially me, would bear the brunt of mums wrath.
We knew she was different but didn’t understand why. She wasn’t officially diagnosed until her mid-late twenties (another long story) and that diagnosis came after she was taken advantage of, emotionally and physically abused by a so-called female friend.
I’m glad you have had early diagnosis, the doctors are better at detecting autism in it’s various forms these days.
However, the system still sounds like it’s letting you down and I hope you use all the tools, info, social networks etc. at your disposal, to get things sorted out for your special little people.
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Red
/ December 26, 2013Well on the way. I have disbanded one group bent on screwing them up and have moved on to another stumbling block to real progress.
Despite better diagnostics, there is still some hungover ’60s mentality when it comes to autism. Brutally unfair to my mind. Education is nothing more strenuous than reading a quick article or watching a 5-min video. Shame so few can be taxed. I do not know anyone who does not know at least one other autistic person than my children.
Gray Dawster
/ December 17, 2013Practice makes perfect does it not? And so with this in mind surely even the experts could adopt a more even playing field so that us mere mortals could understand their reasoning.
If a child is not able to receive the care that it is so clearly requiring, and the experts are lacking in every aspect of their duty to perform, then there is a big problem.
I guess the professionals just hate being wrong, but unfortunately for the many children that need their expertise, they are sadly not receiving it, thus throwing the whole situation into chaos.
If only there was some logic applied then perhaps progress could be made, but until then I presume that the merry-go-round will continue and that is just unsatisfactory in every sense of the word.
By the way I love that new
photograph of you Red 🙂
Andro xxxx
Red
/ December 26, 2013Thank you. That was one day I was pondering the inanity. In fact, practicing rote stupidity makes one particularly adept at it. You know I am going to flatten out one side of the carousel. 🙂 xxx
Tess Kann
/ December 17, 2013Sometimes I believe the problem is personality and superiority. I am the professional. I am trained; you are not. Sometimes the wrong person is on the wrong career path. It takes humanity and humility to give good care.
Of course, I don’t really know but those are my gut feelings.
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Red
/ December 26, 2013You are correct. Sadly, I have found there is a course which teaches how to project professional credentials. I say, “Someone has to graduate at the bottom of the class.” Just because you finished the course work does not make you a supreme being.