Travis just sent me a note, asking this:
“Hi Jackie, I notice you don’t include any behavioural or other social, communication intervention in your training avtivities, They are among the most effctive for young children with ASDs in advancing their development. Is there a reason you don’t cover those? ”
This is not an easy thing to discuss, and I respect Travis for asking. I have difficulty getting past the adage, “If you can’t say something nice, don’t say anything at all.” The best that I can say about ABA from an autistic’s perspective is that it’s paid for by our Canadian medical insurance, and that a practitioner who honestly loves and is loved by her (sorry to sound sexist, but practitioners are mostly women) young clients will get great results from that love, alone.
My lack of mention of ABA is certainly a question bound to come up; it certainly has in more private contexts. So here, I will try to be straight-forward about my concerns without giving insult. Behavioural therapies are based on suppressing the symptoms. When you have an ASD (as I do), you can’t help but realize that these ASD behaviours are expressions of underlying stress and pain.
To suppress these ASD behaviours adds increasing stress to our lives. Although it can be useful to learn to disguise these behaviours temporarily in order not to alienate others with prejudices, it’s a much healthier approach to deal with the underlying health issues causing the pain and stress in the first place.
Many of us autistics who are over a certain age spent rather a lot of time being told we weren’t trying hard enough by people who had no idea just how hard what they were asking us to accomplish actually was, for us. Behavioural therapies, to me, smack of denying or suppressing the individual, who is then the victim of both the ailment, and the culture which further cripples through denial. It implies the person is wrong and bad, not someone with a health problem (and usually more than several) needing to be addressed.
There is also an unfortunate history to ABA. When ABA was first tested in research settings, without any positive social interaction (which by itself has up to 4x the protective, and up to 4x the restorative power of all other health interventions in combination, see Dr. Dean Ornish’s compilation of research in “Love and Survival”), ABA was worse than a placebo unless aversives such as electroshock “therapy” were used. And don’t tell me electroshock therapy is helpful; I’ve not only read the research, I’ve known people wrecked by it when better options were available.
With all of the layers added over time to ABA to make it “more effective”, no one has addressed whether the social connection alone would be more effective without the ABA. Certainly, therapies based more on building social connection, such as RDI and Floortime, are at the very least comparable in their rates of improvements shown.
Finally, to assume that people with ASDs are unintelligent, regardless of degree of verbal interaction or other externally-obvious engagement, is to deny the evidence. Those of us who have broken the communication barrier almost all have areas of genius, despite our other impairments. Please view Amanda Baggs’ YouTube videos, and read Kristine Barnett’s “The Spark”.
It is more the norm for us autistics to have extremely high intelligence, despite the challenges brought on by our poor health, the challenges which are alleviated to some degree if our health can be improved. When we recover sufficient health to increasingly engage, we emerge as highly sensitive people, with all the creativity, perceptiveness, and problem-solving capacity that entails.
To make us plod through ABA sessions which endlessly harp on our deepest deficits, while neglecting our very real gifts and passions, seems backward at best, wasteful from a very dispassionate point of view, and an extreme disservice to the individual being “treated”. We can do better than ABA. In many places, we already are.
Nothing, though, is as healing as love. If a child loves, and is loved by an ABA therapist, I cannot deny that this will help. And often, that’s the very best a parent can hope for, without any other therapies available through our health care and social services. If you are an ABA therapist, and you don’t adore — or “get” on the deepest level — the ASD children you are working with, please find another occupation.
I hope this has clarified things, and please believe me that I don’t wish to start a war about ABA. Michelle Dawson from Laurent Mottron’s Montréal lab is doing a fine job fighting ABA, and I deeply respect her work. My own most fervent wish for my work is to get more attention paid to the underlying health problems causing the challenges of autism, and more effort spent on maximizing and capturing its gifts.
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Nothing, though, is as healing as love. If a child loves, and is loved by an ABA therapist, I cannot deny that is will help. And often, that’s the very best a parent can hope for, without any other therapies available through our health care and social services. If you are an ABA therapist, and you don’t adore — or “get” on the deepest level — the ASD children you are working with, please find another occupation.
I totally agree with you Jackie 100%, i am going into be a therapist and i will be the loving therapist,, and i have more of an advantage than most IBI/ABA therapist, and lost of knowledge, and i have you as my number one research, who has taught me so so much, and for that i am so great full for all that you talk about, and for all the information you gave me, and continue giving to me, and i know i will be a very loving, and very understanding therapist, sending you very big hugs
Your response, while perhaps understandable, is based on inaccurate information. My four books on autsm include almost nothing about suppressing behavior. The approach based on developing and strengthing skills leading to greater independence. Most children with autism have important and life limiting deficits that prevent them from reaching their potential. Overcoming those disadvantages is like teaching a child with cerebral palsy to walk or a child with fine motor dystonia to eat with a spoon ot hold a pencil. There is little credible evidence RDI and Floortime are appropriate and effective. Many behavioral treatments like Pivotal Response Training, Verbal Behavior and my own Blended Intervention focus primarily on social and communication skills. See “Dr. Thompson’s Straight Talk on Autism” published by Paul H. Brookes in 2007.
Travis, the challenges of autism are very real, and very difficult. What you seem to be missing is that they are even more difficult from inside an autistic body, with sensory distortions, high pain and inflammation, hormonal fluctuations taking homeostasis on a hayride, reaction time lags, and drastic cognitive variability.
When our underlying health challenges are effectively addressed (and although repairs are not always complete, great repairs are possible), you’d be amazed at how much, and how easily we learn. Most autistics are highly intelligent, but many are unable to express that intelligence in a recognizable way. Please watch Amanda Baggs’ YouTube videos, for an example of a non-verbal, supposedly non-interactive autistic woman who taught herself to read, type, and use computers to great impact.
Thank you Jackie, for responding to the question with such clarity, passion, and love. ASD’s are difficult enough without adding another layer of misunderstanding.
Well said Jackie. What I sense from these behaivoural approaches supported by Medical is economy.. What you rightfully propose is probably more expensive when going to deeper underlying pieces. Just like in Psychiatry using mostly drugs….bandaids to keep things easy , economic and “under control”, controlling the symptoms. I could say more here in this area with the experience of my 2 sisters going thru the system. So resonating with you in your context from another I have experienced.
Love what you are contributing from your own life journey to enrich all of us and the people you are serving. Hugs
Hi Carol, treatment is only expensive when you suppress the truth — that the underlying health problems can be addressed, and that in many cases the best interventions are low-cost and do-it-yourself. Thanks so much for the kind words, Jackie
When I look back, it is the LOVE my kid’s ABA therapists had for my kids that I remember… that is what I strived for when finding therapists to be in my home with my family. Just instinctively knew this was needed 😉 Love that you shared on this topic Jackie! Susan
courageous honesty jackie. as usual.
it is understandably difficult for most people who have spent years accumulating a body of knowledge from various sources (who are often well intentioned themselves) to begin to question and discard those hard earned prizes and or accolades for clearly more accurate and precise answers. especially when that information has financial implications for existing businesses and careers.
true scientists are willing to do so at all times. constantly vigilantly open minded, brave humility is an implicit necessity for actual science or truth in absolutely every field of human endeavour.
discussion and theory about care in any field of medicine, education, rehab, or charities etc can never be legitimate, ethical, or honest without basing their work or service directly on the client, patient, child, population they are defined to serve. when information directly from the patient and client is pleading to be heard, only the most misguided would ignore it. merely discussing ad nauseum the terminology of being patient centred/driven. then discussing how they will label and talk about that is infuriatingly futile and digresses into wasteful platitudes especially when it never translates into actually listening to the patient, child, or oppressed directly. honestly avoiding and eliminating slant, hubris, manipulation, and bias.
we are incredibly fortunate to have heroic and FIRST HAND voices like jackie, temple grandin, john elder robison, carly fleischman, jake barnett. it is nothing short of depraved indifference to even begin to belittle, diminish, question, or doubt their experience as if they were not as capable as they constantly prove themselves to be.