[This article was edited from a post on the Autism Recovery Forum by S. Rochilli, a parent of a child with autism from Indonesia. Rochilli firmly believes that behavior-based therapies like ABA or Relationship Development Intervention (RDI) should be introduced after biomedical treatment -- not before and not even simultaneously. He shares his experience of treating his three-year-old autistic son.]
It is my strong opinion that biomedical treatment is the horse in front and ABA therapy or, alternatively, Relationship Development Intervention or RDI is the cart behind. Biomedical treatment should come first – not the other way round. The two treatment approaches should not even be applied simultaneously, unless one has a lot of money to spend. I want to share my experience about ABA therapy for autism.
For example, the ABA group that my son uses is quite arrogant and dogmatic in that the people who run the group insist that only ABA has been proven to be effective in treating autism. I don’t believe their claim that ABA 100 percent helpful. I have heard and read about cases where parents spent their whole fortune on ABA, 40 hours a week for years, on their heavily autistic kids with little result. To me, that is financially and emotionally devastating, not to mention lots of wasted time!
How could ABA for autism succeed if the biological issues are not corrected? The ABA newsletter asserted that treatments like HBOT (hyperbaric oxygen therapy) are not proven and of little use for treating autism. Yet I get the feeling that the people who make such statements know little to nothing about HBOT.
In this autism world, competing therapies do sometimes adopt a “competitive” attitude. This is unfortunate. They are supposed to help one another, not attack each other. During one seminar on ABA therapy that I attended, they demonstrated techniques on how to handle autistic kids who are aggressive, or trying to hurt themselves – by hugging and restraining them in certain ways. When I saw this, I laughed bitterly inside! Why? By now, most of us already know that in almost all cases, the reason why autistic kids hurt themselves or behave aggressively towards others is not because they have behavioral problems.
Yet the people who offer ABA therapy still insist that autism is a purely psychological / behavioral issue, not a biological issue. That is the greatest tragedy of the thinking behind ABA therapy.
The biomedical approach to autism tells us that these kids are in pain, because they face issues such as gastrointestinal disorders. In frustration – plus the fact that many autistic kids are non verbal or unable to communicate their anguish – they lash out in anger and frustration. I feel it is fiendish cruelty on the part of those who offer ABA therapy to ignore and refuse to acknowledge the biological issues in autism. Instead, they brainwash parents to handle their kids that way, as if using rewards will stop their unbecoming behavior?
Imagine you yourself having very painful issues in your body. Won’t you feel very frustrated? I have a relative – a normal, non-autistic adult – who becomes aggressive when he suffers severe headaches. What do we do in such situations? Instead of trying to find the cause and remove the pain, do we instead offer money / rewards to stop the aggressive behavior? Isn’t that silly and inhumane ? But that is what the ABA therapy guys are doing with these kids! Sure it may work – even with adults in pain (and adults naturally are much better at controlling their behavioral urges than kids!) But how long will it take? How many hours of therapy?
And even if autistic kids are sufficiently “trained” by ABA therapy to control their behavior, they still don’t feel well inside their body. Now imagine if parents are taught to ignore the biomedical issues as unproven. They will not realize that their kids are suffering inside! They only think that their kids are “psycho” and should be taught a lesson – if necessary, harsher lessons such as those used in ABA therapy for autism! Imagine the kids’ anguish!
Perhaps with enough rewards, repeating the ABA methods will eventually make the kids endure their pain and stop them from expressing their suffering. In this sense, ABA therapy does work, but… Isn’t it more humane and more sensible to address the underlying problems than to suppress them with behavioral modification? This is my greatest complain about ABA therapy and other behavioral modification techniques such as RDI. They think their method is the only way to cure a biological problem.
Well, if you do it long enough and with some luck – and if the kid’s detoxification system somehow turns around on its own without biomedical treatment (it does happen in some cases, though I wouldn’t count on it) – the kids might make it. But more often that not, that is a terribly inefficient and inhumane way to help these kids. My son, after more than a year of biomedical treatment, simply has no more aggressive issues, violent behavior, temper tantrums etc. He no longer tries to hurt himself. Why would he? I have already addressed many of his past gastrointestinal issues. Now he sleeps well at night and his poops are OK. He is, in fact, much more docile and pleasant than my other normal son who could be spoiled and bad tempered at times!
So my personal suggestion for parents is this: please put the horse in front and the cart behind. Recognize that autism is a biological problem, not a psychological / behavioral problem. Find out what’s physically wrong with your kid, and do at least one to two years of biomedical treatment for autism. Trust me. This alone – without or with minimal ABA therapy, RDI and other behavioral modification therapies – will reduce many of the behavioral issues as the child begins to feel much better inside his or her body.
Then, depending on how much progress your kid makes, you may want to use ABA / RDI – or God willing, maybe even a normal private teacher using conventional teaching methods – to help your child catch up with other kids in educational issues. This, to me, makes much more sense! It is humane, cost effective and faster as well!
Over-reliance on external rewards
If biomedical issues are not solved, I also worry that the emphasis on rewards in ABA therapy for autism may “brainwash” my child, and that he will expect rewards for anything! That’s kind of spoiling him! What if he does recover, but insists on being bribed to study, to clean the home etc? It can happen, it has happened with normal kids who are spoilt!
For my kid, I am now quite optimistic. He has done quite well. At almost 3 years old now, his only issue left is he still does not talk, and still does not respond when called. But, he often smiles at us, his eye contact is quite reasonable and he just loves to come to us and be cuddled. My wife keeps saying he is autistic. I tell her: “Look, classic autism means they ignore all other humans around them, but hey, our son now smiles at us, enjoy playing puzzles with us and likes to cuddle with us.” I don’t think I am being too optimistic if I say my son is on his way out of his autism world.
And with his pleasant personality, the moment he starts to talk and is able to interact with the world around him, wouldn’t that be pretty normal already? What more do I want ? I have seen “normal” kids who talk but are quite obnoxious in their behavior! My son achieved all these progress despite not having done chelation therapy. The last porphyrin tests showed he still has heavy metal issues in his body. I look forward excitedly to further progress when we started to take the heavy metals out!
Right now my son still does some ABA therapy for autism, though hardly 40 hours a week. But the sessions don’t look like the typical ABA sessions at all! They look more like a normal classroom sessions where the therapist teaches my son to play, to match shapes, to recognize new words etc. I have no objections to that, of course ! Even normal kids need schooling to learn. Standard ABA procedures are hardly necessary for my son who has no behavioral issues, just that he is non-verbal.
Early support for ABA therapy for autism
And how I wish I can remind the ABA people that, in the early days when everyone said ABA therapy for autism was useless, a Dr Bernard Rimland said it could be helpful. I agree ABA therapy is better than nothing, when, in those days nobody thought about biomedical treatment. Ironically, years before he died, Dr Bernard Rimland started to realize that autism is actually a biological problem. That’s why he devoted his efforts to biomedical matters.
Yet the same ABA people he once supported – and Dr Bernard Rimland’s followers still do – now denounce biomedical therapy for autism as worthless and unproven. To me, this is like divorcing your wife who once supported you and helped you! My suspicion is that, perhaps in some cases, the people who provide ABA therapy for autism realize that since biomedical treatment speeds up recovery, it could mean less business for them in the future.
My apologies if I sound harsh, but I can’t help but feel frustrated that some ABA organizations are stopping parents from learning more about how to speed up recovery. This kind of dogmatic, arrogant “I am the only correct one” attitude does a big disservice to many families suffering from this disorder. It is especially frustrating when there is already plenty of scientific proof that autism is primarily a biological problem, not a psychological problem.
If a family with limited financial means has to choose between spending their limited funds on 40 hours a week on ABA therapy for autism or biomedical treatment, I will say go for biomed. Bear in mind that even the people who offer ABA therapy for autism say that if you don’t do at least 40 hours a week – which cost a fortune! – ABA might not even do much good. Of course it won’t. Even 40 hours a week guarantees nothing, despite what they say. An autistic child who is heavily poisoned, and with a gut ridden with problems, will be extremely difficult to handle even with 40 hours of ABA therapy a week.
With biomedical treatment, when the pains go away, when the special diet reduces the toxic effect on their gut and brains and when their nutritional status is normalized etc, the kids’ behaviour will no doubt improve on their own. Many cases have proved that this will happen. Apologies for the long post, but I want to share my thoughts with all of you.
Resolve biomedical problems first
ABA therapy for autism / RDI is not worthless. All I am saying is that you should resolve the biomedical issues first, then employ these therapies to play catch up. With luck, these therapies might not even be needed. Instead, the autistic child might able to attend normal schools sooner.
Dr. Kenneth Bock, in his book on biomedical treatment for autism (Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders) wrote that he has met parents who previously did not do biomedical treatment, and they spend all their money on intensive ABA therapy for autism, to no avail. I don’t think Dr Bock is lying. This is a tragedy that could be avoided if parents know what is going on.
Biomedical treatment for autism is not complementary. I believe it should be the primary way out, possibly complemented by ABA therapy, RDI and other behavior modification techniques. If possible – and I recognise this is not easy – try to alert parents to the dangers of further vaccinations. Biomedical treatment, together with ABA thearpy / RDI may not be able to keep up with further damage caused by vaccinations and other harmful medical procedures. These could send some autistic children beyond the point of no return!
One last thing… As parents, we must resist the urge to compare our kid’s progress with that of other kids. For example, it is easy for me to get depressed when my wife and I see other kids able to talk a little – even though that same kid might freak out in a shopping mall whereas our son is ok in such situations. I always remind myself and wife that, hey, different kids have different injuries, including different sources as well as intensity of injury. If the causes are different, we cannot use other kid’s progress as a benchmark for our own kid.
Even the Defeat Autism Now! (DAN!) practitioners who advocate the biomedical approach agree that different kids will respond differently to various treatments and therapies. Taking my son as an example, I am acutally not sure if he is purely autistic. He could be autistic as well as suffering from brain injury, or just having pure brain injury. The exact label is unknown, unknowable and I don’t think too much about it. Before he was born, my wife got some dental work done with her amalgam dental fillings.
My wife experienced preterm labor. To delay delivery, the doctors injected her with what they call tocolytic therapy, using a drug called Bricasma. This is an asthma drug used off-label to relax the muscles and delay contractions. Later on I found out that this drug could be a risk factor to hurt the baby’s neurological development. That was risk factor # 2.
Not long after birth, my son had an inguinal hernia operation. He was put to total sleep by anasthesia drugs, drugs which, again, could have hurt the brain of such young babies. But the operation had to be done or else… I had little choice at that time. That was risk factor # 3.
The last two risk factors, on their own, could have resulted in significant brain injury, not to mention the vaccines he received. We stopped before the MMR shot. Sometimes, the symptoms of other issues like brain injury could overlap those of autism. That is why hyperbaric oxygen therapy or HBOT appears to help my son greatly, since HBOT is most well known for neurological / brain injury cases. Of course, HBOT often is helpful for autism as well, just that perhaps brain injury might need even more HBOT, possibly at greater pressures with more oxygen.
So do resist comparing with other kids. And don’t feel depressed if other similar aged kids make more progress. It’s like trying to compare our own bank accounts with the accounts of rich folks. There is always a higher mountain. Just do our best and hope for the best.