While it's going to look like I'm singling out two specific parents, that isn't the purpose. They are just two of the many available examples of what I want to illustrate. There are many more similar examples--not only reported in the media, but also in the science, where the observers are not parents but behaviour analysts and cognitive scientists.
The first parent is the Conservative MP Mike Lake, who has talked about his brilliant autistic son in the media and in the House of Commons. The first I read about Mr Lake's son Jaden (who, at age 11, communicates via keyboard) was in a National Post story. Here is Mr Lake describing Jaden at about age 2yrs:
We could tell he was a smart kid, in terms of numbers and the way he played with letter toys. But he would sit in a corner and play and you could not get his attention at all. We wondered if he was deaf, but if you went into a different room and put Winnie the Pooh on television, he'd hear it.
It looks like Jaden has taught himself both some degree of numeracy and some degree of literacy--all by age 2. As is characteristic of autistics, he does not orient to stimuli in typical ways, and is attracted to the kinds of information from which he learns well.
In the House of Commons, Mr Lake elaborates on Jaden's extraordinary abilities, evident from a very early age:
Between 18 months and 2 years old Jaden started doing some pretty amazing things. Like just about every kid his age, he had one of those foam alphabets that fit inside a foam frame. One day on a whim Debi took the frame away and left him with just a jumbled pile of letters. Jaden proceeded to put the letters in order just as fast as we would do it the very first time.
Then to our amazement, a friend of ours mixed up the letters in a pile and put out the letter Z. Jaden, without missing a beat, put the letters in reverse order Z, Y, X, W, V and so on just as fast as he had done forward.
This shows that Jaden has learned a great deal from his environment, that he is responsive to this environment, and that he responds to the actions of others (his way of communicating and playing). But Mr Lake again sees problems:
As amazing as things like this were, during his second year we started to notice some other things that caused us some concern regarding Jaden's development. He was extremely content playing on his own with little or no interest in playing with other kids or interacting with adults. His speech was not really developing beyond the first initial few sounds and he was very focused on patterns, often spending an inordinate amount of time lining up his videos or stacking cups in perfect order. He paid little attention when we tried to talk to him or play with him. We would have thought he had a hearing impairment except for the fact that if he heard a video he liked start up in another room at very low volume, he would instantly stop what he was doing and go to watch it.
So what is the solution? This is Mr Lake describing Jaden's ABA program in the National Post:
The first thing they did was sit Jaden at a table and put a spoon in front of him and ask him to hand them the spoon. They would do that six hours a day, for days and weeks. The next stage, they would put a spoon and a fork down and go through the whole process again. It is very tedious and intensive. But his pediatrician said that he is entirely different due to ABA. He's now one of the most amazing kids -- he will look you in the eye and he will understand you when you ask him to do something.
The second example, where ABA is also said to have changed everything, is from Autism Vox. Here is the first part of the first comment on a post about ABA and recovery:
My daughter has made great strides with ABA therapy as well. I mean I don’t think there’s any question of the effectiveness of it for enabling autistic children to learn. Every single thing she knows, she learned from ABA. This is fact. Except for the things that seem to be her gifts. She spelled words with refrigerator magnets long before ABA therapy. She plays the piano almost in spite of ABA therapy. She taught herself to read without the use of ABA therapy. Adding and subtracting. She was obsessed with numbers and sequences of numbers before ABA.
Having said that, she had no language before ABA, no eye contact, no social skills, absolutely ignored everyone and everything. This is really amazing though. My mother has a small dog. She babysat for Jodi for the first two years of her life. She started a not so good ABA home program in my mother’s house where she spent the day. This dog never meant a thing to her. After ABA therapy, when we go to my mother’s house she’s afraid of the dog. It’s weird. It’s almost like before ABA that dog didn’t even exist. I know this is subjective, but prior to ABA she seemed much less engaged in the world. Much less is an understatement. She seemed like she wasn’t even there and when something was thrust upon her like someone saying hello up close that she couldn’t avoid, she’d cover her ears.
ABA changed all those things in 1 year.
This is how I responded on Autism Vox:
An autistic who teaches herself (it looks like, very early) to read and spell–has “no language” and totally ignores everything?
And she doesn’t just teach herself to read and spell, but plays the piano (in spite of ABA–because ABA won’t allow her to learn how she learns well), teaches herself to add and subtract, etc?
And this girl is oblivious? And since when does written language mean “no language”? And how does a girl who is totally oblivious (according to the above, “She seemed like she wasn’t even there”–the usual description of us as not really existing because we orient atypically to stimuli) teach herself how to read and spell, etc.?
Even when autistics demonstrate clearly that there are ways in which we learn extraordinarily well (including learning language), because the way we learn is atypical, this is written off as “she wasn’t even there” and “she had no language before ABA”. Therefore, she has to be completely altered by ABA programs, in order to persuade her entourage that she is “there” and that she can learn.
My view is that ABA “works” when autistic children are totally written off (“not there”, oblivious, “no language”, etc). In this case, at least ABA will demonstrate to parents that their child exists and can learn–by giving the child “right” non-autistic behaviours, and eliminating “wrong” autistic behaviours. This is even though the “wrong” autistic behaviours previously resulted in extraordinarly learning by this child. This is even though the child learns with much greater difficulty in ABA, and in a much more limited way, than she would if provided with the materials and opportunities to learn how she has amply demonstrated she learns best. But even though this use of ABA “works” (see above–after ABA, the parents notice that the child is present and sentient, and then they credit all progress to ABA), this is fundamentally unethical. A child should not be put in a program to compromise her learning (how she learned to read, spell, do arithmetic, play the piano, etc.) in order to deal with parents who, against all evidence, decide she is oblivious because she is not like them.
It is some kind of tribute to autism advocacy (Mr Lake read "Let Me Hear Your Voice"--a book which describes autistics as being non-sentient, inhuman, and dead--just before Jaden was officially diagnosed) that so many parents view their autistic children the way the parents above did.
I was asked once if there were circumstances in which I might consider that ABA programs really should be used with autistic kids. I gave examples where autistic children are described as, and assumed to be, non-sentient. When autistics are described and treated as non-sentient, this is now routinely praised by autism advocates as "autism reality", as being a true representation of how devastating it is to have an autistic child.
Being considered non-sentient can be dangerous for any child. Autistic adults also routinely get described and treated as non-sentient (this has happened to me), and this is definitely dangerous for us.
If ABA programs result in parents altering their views to see their child as sentient, aware and able to learn, then the child's situation may not be as bad as it had been. But as I wrote above, this is not an ethically acceptable solution. The ethical course of action is to train parents to recognize that their child is sentient, responsive (to the environment, to other people), capable of learning (though not necessarily in typical ways), and communicative (ditto). Parents can then be trained to respond to their child's communication and learning. Interventions which train parents to be responsive (rather than "directive" and "intrusive") to their autistic children have demonstrated their success in several published peer-reviewed papers, including a randomized controlled trial (Aldred et al., 2004).
But we live in a world where autism advocates deny that this kind of science even exists. Also, we live in a world where autism advocates use their power and influence to disseminate the "facts" that autistics can't communicate, learn or even be sentient outside of ABA programs. So is it better for an autistic child to be in an ABA program than to be treated as though non-sentient (unaware, unresponsive, incapable of learning, unable to communicate, etc.)? Why should this "choice" be imposed on anyone?
(Edit: And some parents whose autistic children receive optimal ABA services still continue to view these children as non-sentient and doomed, and are applauded by autism advocates for expressing these "autism reality" views in the mass media.)
Reference:
Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420-1430.