Susan Senator
All happy families are not alike...
All happy families are not alike...
Calling Franz Kafka
A few friends have forwarded this link to me “Escape the Hopelessness,” from the National Autism Association, and I feel the need to blog it myself. Frankly, it is ads like these that make me feel hopeless. Hopeless that this society will ever be able to get to a place where they accept difference and even learn from it. I, for one, do not want any of my children, autistic or not, to morph into something they are not. Especially not some kind of bug.
Is autism treatable? Some say it is. But we have to be extremely careful that we are only treating difficult symptoms and not trying to alter who a person is inside. And sometimes, the symptoms are there because we lack the understanding, not the child. I remember when I finally let go of all my ABA training — I had been directed to make Nat file cards alphabetically to rechannel him whenever he laughed inappropriately — I discovered connection with Nat. In that split second that I did not reach for the file cards and instead, sat down on the couch and laughed with Nat, got as silly as he was, he looked at me, really looked at me, and soon his laughter died down naturally. In that moment everything shifted for me, and I realized that he truly is just a person, just a kid, with his own goofy way of doing things and it was up to me, the parent, to figure out how best to connect with him, rather than squelch the “inappropriate” without looking beneath the surface.
I think the question should be “how can I help my child be the best he can be without giving him a message that he is somehow defective?”
(Photo is Nat, caught “mid-flap” and doing silly talk while looking at his Lego swimming pool birthday cake)
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ABA is not about forcing your child into something he is not. It is also not about making children feel defective. It’s a methodology that is very effective for many children to help them learn and be educated, which is their right. Additionally, the quality of many ABA programs (as well as VB, RDI and others) and providers vary greatly so if one person had a bad experience with one, it does not mean that ABA in general is somehow bad. ABA and other methodologies are used successfully with children everyday while still respecting who they are. Whoever told you to redirect your son to card filing everytime he laughed inappropriately was not an effective ABA therapist. This would have just brought more attention to the behavior and made him feel as if he were doing something wrong. Just because ABA was not right for your family, does not make it wrong for many others.
Anonymous,
It’s a methodology that is very effective for many children to help them learn and be educated, which is their right.
There’s very little evidence to back up your assertion. The reality is that absolutely no autism treatment could be said to be clinically proven.
Hi Susan,
I see you got one of the “how dare you question ABA” people comenting.
The problem with ABA is that it gives the trainer the impression that his or her impressions must be right.
The kid is smiling, he must be happy. (not always true)
]
The kid is not looking at me, that’s bad, he’s rejecting me. He’s not learning. Must train eye contact. (totally untrue with autistics)
The kid is pacing, not sitting. This is bad because I say it is. (It’s all about power and messes with the mind of the “therapist” as much as with the child)
Sure, parents need to impose directions on a child sometimes, but in a parenting situation there is a give and take, so long as there is love. Even some teachers actually see that they can learn from the child and allow for a give and take. In ABA it’s, “I have these goals for you and you are going to live up to them. And until you can do “X” for 3.5 minutes out of 10, we will keep practicing until you do. Until you can obey within 4 seconds you will be forced to do something until you do obey within 4 seconds….” That sort of thing. It’s *inhumane* in it’s very nature. The teacher becomes a trainer.
I love your story about learning to laugh with Nat.
Anyway… thanks for the blog about the horrible metamorphosis PSA.
Really? So far the only scientifically proven method for children with autism is ABA. I’m not saying that anyone does or does not have to use that methodology or that it is effective for all children. That is up to the parents obviously. The hypocrisy is so apparent. Quickly criticize and become defensive whenever anyone comments on treatment that you don’t believe in, and don’t let anyone else express their opinion on what they feel is effective regarding treatment. You people don’t “discuss” anything. How unfortunate.
“Quickly criticize and become defensive whenever anyone comments on treatment that you don’t believe in, and don’t let anyone else express their opinion on what they feel is effective regarding treatment.”
Anon – I believe *you* are the one that’s defensive. And if you’d wanted to “discuss” ABA, why do you use such tone? My son gets ABA and we’ve found that he’s made a lot of progress with it. But I wouldn’t cram it down anyone else’s throat. Parents know their children best so why should the rest of us judge when they pick or don’t pick the same therapies and/or treatments that we use? Furthermore, what’s effective for one child will be worthless for another. If you are, indeed, a parent of an autistic child, you already know this because if you’re like all of the other parents I know, you’ve tried everything at least once.
For the record, I did not mean to imply that ABA was not a fairly effective approach for teaching Nat certain concrete skills. I was not speaking about ABA for the multitudes who use it, either. But for teaching him about the use and meaning of laughter, using my gut and heart were far more effective — plus it taught me an even larger lesson about Nat.
Which is what I am saying Wendy. I am not cramming ABA down anyone’s throat. I was simply discussing an option. I think they clearly try to insist that their opinions are correct and quickly discount others. I also believe I did acknowledge that a methodology which works well for one child may not work for another.
Susan, this post choked me up. The moment of connection that you describe is beautiful. And for me, the question you pose: “how can I help my child be the best he can be without giving him a message that he is somehow defective?” is the most important one I can ask. To me, parenting Bud is ALL about making connections.
I love seeing Alex flap. The movement just seems so joyful. The photo of Nat reminded me of that. Thanks for posting it!!
I also remembered the time when Alex was so enjoying his computer game he had to flap his hands extravagantly… but then he couldnt press the keyboard. He tried to use his nose! cool!
That’s a cool cake! I’m looking to get adopted into your family one day a year just for the cakes.
“I’m looking to get adopted into your family one day a year just for the cakes.” Very funny!
It is a joy to connect with our children on any level. There hasn’t been any way to change Alex’s “silly talk” through the years of therapy, and when I finally decided to join in on his level, we’ve had some very good connections I would never had had otherwise.
Keep listening to your heart, it’s obviously telling you good things. 🙂
We have a TSS and ABA support for our son all day, but we find that he needs some down time. We try to balance things so that he is not treated rigidly. After all, he is just a little kid. Sometimes it is hard to know what is autism and what is FLK syndrome (funny little kid).
I think that most parents have a sense of intuition about their kids and know what they need. Don’t second guess yourself. You are doing fine and your son loves you. That’s the whole ball of wax, at least in our house it is.
Otherwise, he might just as well be living in an institution if everything was therapy 100% of the time.
I love the cakes too.
JB
Something I wrote a couple years ago:
http://www.autistics.org/library/anotherparent.html
Children can be made to feel defective in many subtle ways despite a well-meaning intent to do otherwise.
I have long explained behavioral differences as often being attributable to connections in one person’s brain “zigging” when another’s “zags.” These are hardly neurological, scientific, or educational terms but have helped some understand without applying qualitative assessments.
Just became intrigued with reference on side bar at “I Speak of Dreams” re “brainforest” and concept of neurodiversity by Thomas Armstrong and followed the link to here.
Believe everybody working with individuals with special needs would do well to give consideration to the concept.
When was Nat’s birthday?