Monday, July 13, 2009

Autism, ABA and Conor's Autism Medications (None)

The Internet criticism of ABA as an autism intervention comes largely from a rejection of evidence based medicine, ideological based rigidity and lack of any real experience with ABA. To the anti-behaviorists no ABA supportive studies are acceptable unless they are double blind controlled studies conducted over the life time of autistic persons. Obviously it would be unethical to provide a placebo intervention to an autistic child as an intervention over a lengthy period of time.

The various studies described by the American Academy of Pediatrics, the US Surgeon General, state agencies in New York, California and Maine, the Association for Science in Autism Treatment, the Center for Autism and Related Disorders, the May Institute and the thousands of health care and education professionals who actually work with and help autistic children will be ignored by the anti-ABA ideologues. There is no need to mention of course that the direct observations of autistic children by their own parents who live with their children, care for them, help them and observe them 24/7 are of no weight whatsoever to the ideologues for whom NO information supportive of ABA could ever be acceptable.

Some of the anti-ABA rhetoric originates with adult persons with various autism spectrum disorders who themselves have had no actual involvement with ABA. The further removed from the realities of ABA and the need for an effective intervention that helps autistic children the greater the chance that the irrational anti-ABA ideology will take root. The criticisms themselves are largely non-evidence based and ignore the many positive contributions that ABA has made to the lives of autistic children including my severely autistic son Conor.

Conor has learned various skills, reduced self injurious behavior, increased communication skills, attended a neighborhood school and functioned well. On the sidebar of this blog are pictures of Conor holding his perfect attendance certificate from grade 6 during which time he received ABA instruction at school. This year colds and a flu prevented him from perfect attendance but his desire to attend school did not diminish. He loves school ABA and all. Why would Conor jump up each day eager to attend school where he receives ABA intervention if it was so abusive?

I post many picture sets of Conor on this blog site over the past 3 years. These portray him as what he is -- a very happy, personable and lovable boy. ABA has not turned him "robotic" or robbed him of his personality. There is nothing at all abusive about ABA for autistic children, certainly not for Conor, despite the absurd rhetoric of the anti-behaviorists.

Conor is now 13 1/2 years old and stands 5' 11''. In the past year and a half he has undergone the adolescent "change of life" with rapid growth spurts and all the other changes that can be so disruptive of young personalities in the teen years. While there are some challenging behaviors at times there is nothing out of the ordinary. Despite his growing size, strength and disruptive adolescent changes he is still a very well behaved, gentle young man. We have not felt the need to provide Conor with ANY medications at any time to manage his behavior.

Although he used to bite himself with some frequency, and still does on occasion, such self harmful behavior is rare. He does not return home at the end of a day at school and engage in self injury as a way of coping psychologically as one prominent anti-ABA activist testified that she would do at the end of the work day. The ideologues can blame ABA intervention for Conor's near elimination of self injurious behavior or they can pretend that my direct observations about the impact of ABA in reducing such behavior are of no weight. No need to guess which way the anti-behaviorists would lean on that choice.

Conor has received NONE of the medications prescribed for many autistic children. The anti-ABA ideologues can also blame ABA for that result but they won't. They don't really want to look at the issue objectively. They do not want to look at the whole picture including the benefits ABA has brought to my son or other autistic children.

If you are the parent of a newly diagnosed autistic child consult your attending health care professionals about the best way to help your child. Make any treatment or intervention decisions with their input but do not be turned off of ABA as a possible intervention to help your child by the anti-ABA rhetoric that permeates some Internet autism hubs. Most of such rhetoric emanates from people with no direct involvement in helping autistic children. Most of such rhetoric emanates from people with no actual experience with ABA. Most of such rhetoric emanates from people, whether they fancy themselves researchers or not, who just don't know what they are talking about when they are talking about ABA. Do not be misled by the misbehavior of the anti-behaviorists.

In the meantime I am looking forward to another day with my wonderful son who has benefited greatly from his ABA intervention. Conor will probably also enjoy the day ... without the need to injure himself so that he can "cope psychologically" ... and without medication.

God damn that ABA!

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farmwifetwo said...

They think a double blind study should be done - BINGO! Is that not what you think of all the other forms of therapy?? They aren't valid unless a study has been done?? From what I've read in blogland (and you know how subjective that is... so please post the link to the peer reviewed article if you have it) Lovaas still hasn't submitted proof of ABA's successes... where's the report??

It's CRUEL to force a child to sit at a table with a locked door (although the NEW program was in my living room) for HOURS a day. "Do this", "Do This", "let me shove food in your mouth when you do it right" (that one I NEVER agreed too and were they mad at me), let me let you play with this book/toy for 10seconds and take it away again. "Oh, you want to get up and run, sorry you can't".

The original ABA method, the one Lovaas claimed work is no more than training Pavlov's dog to respond to stimuli.

Those that claim to love ABA in Ontario, are usually private based centers and use a lot of Floortime (playtime) mixed in with the ABA.
Therefore there is no proof it works because there is not a formal model of delivery even to begin with and subjective at that. One of these so-called autism specialists can claim that he's learned something, yet, and a professional - like an SLP or OT or Dev Ped - will say "I don't think so". Also per my son's psychometric exam in June prior to his starting Sr K in Sept, it reads "Child cannot transfer skills outside of the ABA setting"... he'd been in the program since Oct, knew all shapes, colours, sorting, animals, objects in the house, follow directions (PEC's) to complete 6 puzzles independantly without prompting.... etc... and could not tell the examiner outside of the ABA setting. IMO a complete failure.

Can your son transfer his skills to your home?? And can you do it in a general setting not present the material exactly as the ABA therapist did?? No generalization... no understanding, just rote mimicking.

That following 6 tasks was one thing I found ignorant. Instead of being allowed to play at daycare - they were there - he had to do activities that they told him to do and follow in the book. He couldn't "play" b/c.... Autistic children can't play they must be constantly told what to do. I wasn't suppose to let him "play" when they were gone at night. He had to do tasks while I made supper and until bedtime b/c he had to be kept busy all the time.... I ignored that one too.

So... IMO, the delivery model is WRONG for children unless it involves Floortime and other play activities.

In Ontario the school system has PPM 140 which is ABA. No it's not the sitting for hours with 1 to 1 Pavlovs dog training, it is breaking skills down to manageable components and teaching - behaviour, social and communication and keeping records on whether or not that method of teaching works, if not, try something else.

That is what the bare bones of ABA is... break a task down and teach it... is that not how we teach all children EXCEPT.. children with autism require 1 to 1 learning??

It allows for the usage of task boards, token systems and other tools - quite often from the TEACHH program since that is the one used in Ontario - to help children in the classroom.

My child has 1 to 1 in the regular classroom (not stuck alone for hours like yours is - my sensory issues are dealt with in the classroom so he can be part of it) and he takes part in all activities, yet his school work is modified. BUT, he does his "modifications", while the others are doing their "regular" work. He's still with them and they still take an active role in being his helper and his friend.

Ditching, undending rote trials, Pavlov's dog training ABA for the youngest... was the best thing we ever did.

Using PPM 140 for the elder, turned Gr 4 into a huge success when at the end of Gr 3 I had fears it was going to be a disaster

Anonymous said...

Just a comment about medication...
You do not have to choose between ABA and medication.

Our son with autism has been taking medication for attention deficit and hyper activity for 3 years now. It is a very difficult decision to make for parents.

It has made a big difference in his life. He is now able to concentrate and learn more with his ABA therapy. His progress has been great.

We strongly beleive in ABA for our son and have seen all the good it does for him. He will get ABA therapy as often and as long as possible.

Tracey said...

Perfect post! I have to young boys witth autism and ABA has been their savior. My criticsm for the anti-ABA people is that there may have been a time when ABA was different and adversive. But my boys play, laugh and work during their sessions. This is where they are learning to speak or communicate. The hardest part for them has been the begginning stages of language when they were pushed to ask for their favorite things...balls, chips, it is not easy for them, but no one is holdinng them down...just pushing them to communicate. The changes are immense and they squeal with excitment when their ABA therapist commes to the house for their sessions.
The biggest advice I have for those new to autism is to do your homework. I initially had a bad opinion of ABA before I learned more about Verbal behavior and realized that it is not about forcing a child to sit in a chair and become a robot. It is about a positive experience to give them the best atmosphere to learn and grow.

Kevin said...

I'm glad that ABA has had a positive impact on Conor's life and yours. I appreciate that you write about Conor's response to ABA intervention. We should always keep in mind the patient or the consumer's response to health care. I work for, a user-generated website that features health care videos. Check out the site for videos on autism and sign up. It's free, and we can upload your videos for you. At any rate, check out for health on the web.

Roger Kulp said...

All I have to say is when both you and left brain/right brain agree on something,in this case that psychoactive drugs are bad for those on the spectrum,there is obviously something to it.

Big pharma is nobody's friend.

A personal observation.The urge for self injury varies according to severity of the autism at any given time.Perhaps the fact that Conor no longer does this may be due to some physical improvement in the brain.

Anonymous said...

Whe my eldest son was diagnosed, I was offered meds for him immediately...I declined considering I did not know the disorder and felt I needed to learn more before medicating him. I learned ABA and still learning. I am over 2 years in since my sons diagnosis and now my youngest is diagnosed as well. After almost 2years, I did research and asked for meds for my older son as he was so tortured with anxiety. I live with anxiety as an adult and couyld not imagine my 7 year old feeling like that each and every day. The meds help but it certainly is not a cop out to ABA...ABA takes work and dedication and it is soooo worth it!!!!

Stephanie Lynn Keil said...

ABA can be practiced in an unethical way. I don't think farmwifetwo had a very ethical experience with ABA. I've read many other stories that were positive. I've also read some that were negative but it was obvious that the ABA was not being practiced correctly.

It IS cruel to force a child to sit at a table with a locked door, but when ABA is practiced correctly it is not cruel.

navywifeandmom said...

That's great that Conor is doing so well with ABA and does not need medication, especially now that he has hit the teen years, which can be a challenge for kids like him.

Natalie has not needed any medications either so far; I credit that more to her dietary restrictions and vitamin therapies that we have tailored to her, though. She would have at LEAST needed sleep medication had we not tried some biomed as her sleep habits were miserable. I have nothing against medication or people who choose this route; I just want to try behavioral and natural remedies first before resorting to meds as she still has a small, growing body and sometimes the side effects can be worse than what the drug is treating for.

ABA at school does help her immensely, though. In fact she is really getting bored and missing school right now that it has been out for a whole month and she is starting to stim with water (turning on the faucet and sticking her hair under it) because she has nothing to do.

Can I ask what you do in the summer to keep Conor busy and happy? I kind of run out of things to do with Natalie and she does not intuitively know HOW to play. She attends ESY in July but I still have lots of hours to fill with things for her to do.

john said...

I love reading your blog and Im glad to read that conor doesnt need medication.

However, my son does. It doesn't make me a bad parent.

One of the things I loved about your blog was that it was clear you understood that not every child with autism was the same.

Maybe I was reading your post wrong, but it seemed you were bragging that conor didnt need meds. which of course, for parents who had to put their child on meds, that we should be ashamed or something.

For my son, if he was not on medication, he would not be able to live in our house safly. BTDT.

I guess reading this post, your angry at the Anti-ABA people since ABA is helping Conor. Well, sometimes I get angry with the anti-med folks, because my son needs meds to function.

There are alot of parents out there who dont approve of medications for their child. To be honest, I sometimes wonder why. Why would a parent choose to have their child who clearly is in so much pain deny their child something that could help them.

If a child was diabetic, and their parent had to give their child insulin, would you brag about how Conor doesnt have to take insulin?

Here in MA. We have a parent who is in jail waiting trial because she refused to give her son chemo who had a 90% chance of survival but she didnt bring him. He died. Medications can help a child.

Like I said, Im glad to hear that Conor doesnt need meds. My son does.

We struggled for a long time around this issue as most parents do, but because of the meds, he is in a much better place.

It doesnt make me a bad parent or you a good parent.

It just makes us parents with different kids, trying to help our kids the best way we can.

Some kids need medication, some dont.

I guess this post really struck a nerve with me as you probably can tell.

As I always say, until you walk in our shoes, try not to judge.

Sometimes kids with autism do need medications. Not all kids with autism are the same. But you already know that.

anyway, keep up the good work.

As i have always stated, if what you find is working, thats great, keep going, but if it stops working, then its time to find something else.

its not better or less then, it is what it is.

Autism Reality NB said...

John I agree that providing your son with medication does not make you a bad parent.

I used the fact that Conor has not had medication for his autism simply as a measure of how well he has done with ABA. Conor did NOT have the 40 hours a week Lovaas from 2 to 5 that would have been optimal. He was, and is, severely autistic.

But with ABA we are able to communicate with him and he with us far beyond what we could when we started with him. It has helped us minimize injurious behavior and helped him learn skills.

Having gone through a rapid growth teen year we are just extremely pleased that we have not had to use meds ... so far.

Without ABA it is highly unlikely we could have gone this far without meds for his autism.

I can not say that Conor will never need meds but as long as he can go without it will be better for him.

My comments are not aimed at parents whose children do require meds. It is aimed at those with little or no experience with, real stake in, or knowledge of ABA who attack it and ignore the benefits it can bring to autistic children ... including my son.

A Family said...

Said wonderfully! ABA has changed my son from no words to a couple hundred, from not smiling at all, to smiling ALL DAY. Nothing robotic about it. Although our school district disagrees, my son stays home (since he is only 2) and does 30 plus one on one ABA a week, while others bash ABA and send their kids to an autism preschool room, where there children stim and learn nothing since they are never taught to "attend". My son is healing. Unfortunately and sadly enough, the other children not doing intensive ABA are not.

coc said...

It's CRUEL to force a child to sit at a table with a locked door (although the NEW program was in my living room) for HOURS a day. "Do this", "Do This", "let me shove food in your mouth when you do it right" (that one I NEVER agreed too and were they mad at me), let me let you play with this book/toy for 10seconds and take it away again. "Oh, you want to get up and run, sorry you can't".

If this is what passes for ABA in Ontario then I despair for children who need evidence based intervention in Ontario. Your characterisation of ABA as Pavlovian Dog Training is ignorant and offensive (not you I hasten to add, but the halfwits who left you with this impression of ABA). If the ABA programs in Ontario are not positively reinforcing for the children then they are not ABA. Forcing or locking doors does not come into it. Did you enquire as to the training and qualifications of the staff in the school?

There are 40 years plus of studies supporting the use of ABA for teaching children with autism to learn and Harold's blog refers repeatedly to such studies. Major studies done recently include:

Early intensive behavioral Intervention: Outcomes for children with autism and their parents after two years. American Journal on Mental Retardation, Vol 112(6), Nov 2007. Remington et al.

Outcome for Children with Autism who Began Intensive Behavioral Treatment Between Ages 4 and 7: A Comparison Controlled Study. 2007 Eikeseth et al.

Early Intensive Behavioral Treatment: Replication of the UCLA Model in a Community Setting. Journal of Developmental & Behavioral Pediatrics. 27(2) Supplement 2:S145-S155, April 2006. Cohen et al.

Research in Developmental Disabilities 26 (2005) 359–383. A comparison of intensive behavior analytic and eclectic treatments for young children with autism. 2005 Howard & Green.

Replicating Lovaas’ Treatment and Findings: Preliminary Results. 2003 Sallows & Graupner.

Apologies for the lack of links for above, though I'm sure Harold has linked to them all at some point or another.

Thousands of studies can be found here:

Are all of these studies perfect double blind studies? No, but compared to the ethereal 'body' of research out there supporting TEACCH or Floortime or Son Rise or whatever, they represent a fairly conclusive demonstration to my mind. As Harold has pointed out, in a free society researchers are going to have problems constructing a perfect study, given the likely difficulty in persuading parents to sign up for a study where they might constitute the control group.

john said...

"All I have to say is when both you and left brain/right brain agree on something, in this case that psychoactive drugs are bad for those on the spectrum, and there is obviously something to it.

Big pharma is nobody's friend."

You want to watch my kid for 3 hours off meds? I dare I am sure you would be singing a different tune after 1 hour.

It’s the ignorance that gets me and the judgments around parents who struggle with the public view around kids and meds.

Before medications my son has seen quite a few emergency rooms on a weekly basis and as he got older it only increased. He has been admitted to hospitals for lengthy admissions and was incapable of doing anything else.

I’m sorry to hijack your blog Harold. But this makes me crazy.

So roger, my offer stands as we are starting to look into a med change. But make sure you hit the gym first, he is a pretty strong 13 yr old and you have to dodge TV sets being thrown at you and be careful of the windows. He likes to smash his head and fists in windows, (not sure why though)

The reason for the work out though, is you actually might have to restrain him until the ambulance comes. The good news is the ambulance actually lets you ride with him as you watch two men try their best to restrain him in van. Fun fun fun.

So meds might not be your friend, but for my son, they are actually his best friend.

As for diets and more non invasive therapies, we have tried alot of it. We did notice some change, but not enough to say the diet or therapy could actually work for a long time.

Now, regarding ABA. (which I am 100% behind)

But the downside of ABA, or any other therapy, can only work if a child is capable of participating in it.

From first hand experience, ABA can NOT work if a child is being restrained constantly.

Sorry Harold. You dont have to publish this, but I feel better writing

The Glasers said...

I am glad your son is doing well on ABA and does not need medications.

My 20 yo is doing well with RDI and she has never needed medications either.

I have to make a comment about your article on RDI and I am disappointed I cannot comment there, so I am commenting here! Sorry!

Here is the original article.

My friend, RDI was in its infancy when the MADSEC report was written!

We have been doing RDI with my low verbal 20yo daughter with autism for two years. She has made progress in ways I could not have predicted. The only thing we did differently was RDI. She can now understand and use nonverbal communication. She is becoming less controlling and rigid in interactions. She can hold short conversations with people without my intervention. She now pays attention to people: she wants to know their names, she wants to know where they live, she wants to know who is at the door! She does this out of interest, not because I have prompted her to do any of this. She gets some of the humor in age-appropriate movies like Ferris Bueller's Day Off.

ABA has been around for five decades. Where are the studies showing where the adult graduates of ABA are today? Are they still "indistinguishable from normal" as adults?