Sunday, November 06, 2011

No Autism Advantage for My Son As He Slaps His Head and Bites His Wrists


The pictures above were taken of my son Conor during our early morning walk yesterday.  We have enjoyed many such walks and yesterday was a beautiful fresh fall morning that we both enjoyed.  Most of the rest of the day was also great.  Conor is a lot of fun, notwithstanding his Autistic Disorder. I enjoyed every moment with him ... except as the day drew to an end.  

At about 7:30 pm last evening Conor started to repeat the phrase school on Sunday, school on Sunday, school on Sunday .... endlessly.  He also began slapping his head and biting his hands, wrists and legs.  My attempts to communicate with him and modify his behavior, which apparently Dr. Laurent Mottron, and his mentor Michelle Dawson, would consider advantageous behavior, were only mildly successful.  I tried to get him into his bedtime routine in the downstairs washroom, to get him brushing his teeth, washing his face etc. The immediate result was a full scale meltdown which I overcame simply by loudly commanding him to begin brushing his teeth.  

As Conor completed his bedtime preparation he calmed down.  At 8:00 pm he went to sleep on the living room couch as he often likes to do.  I placed pillows under his head and covered him with lots of thick heavy blankets, then stayed nearby working at a computer in the adjacent kitchen.  Conor made some gentle singing and whistling sounds but engaged in no more self injurious or loud behaviors as he quietly went to sleep.

I  was thankful, for his sake and mine, that my son's autism advantage had disappeared for the night, that his slapping, biting and screaming had stopped and that he was able to get some sleep.

I look forward to another beautiful morning walk with Conor today but I hope that his autism advantage does not return. 

20 comments:

usethebrainsgodgiveyou said...

What causes the cascade of emotional turmoil? It's like a freight train running to the station with no breaks.

Autism Reality NB said...

usethebrainsgogiveyou I don't have the answer to that question. I sure wish I did.

jonathan said...

I thought your referring to Michelle Dawson being Mottron's mentor was tongue-in-cheek at first. Either you are psychic or you read something I never did because according to the nature article, it was michelle dawson who convinced Mottron that autism was an advantage rather than a disorder.

farmwifetwo said...

That's what drove me the most batty about ABA. No communication skills. Nothing worse than your kid scrolling through the "do this" list at the fridge hoping it'll magically open. Then their was the "put some candy or cookie pieces in a pouch and stuff them in his mouth when he does something you want him to do". Needless to say we fought about these things and they didn't appreciate my opinion.

http://www.special-need-products.com/go-talk-20.html At the very least he needs one of these with a button that says "Connor tired" so instead of a meltdown he can tell you he's had enough for one day. Or "Connor walk" so he can tell you he needs to get moving before the sensory overwhelms him.

Communication is key, yet, it's the last thing they teach the severely autistic. It took me 2hrs to convince them to take him in the ACS/AAC program. TWO hours of discussion. Unbelievable. She still wasn't convinced until she met him.

We have a tri-fold flip book with noun flip that velcro's on the end. It has over 300 words on it and I need to add some more to the nouns. Mine can atleast verbally mand and can mostly tell me what is wrong. Yes, it's one to 3 words most of the time. Answering wh questions is very difficult and he describes using nouns not verbs so those are the 2 area's we are pushing using the book.

Communication and sensory. The 2 things ABA would not do. But, they certainly taught him how to twist his fingers. The baby and ring finger on the left hand are now a twisted mess. Why?? b/c sitting and behaving was their mantra. OT and SLP... they knew nothing.

Cameron said...

It' certainly day to day eh Harold. I feel for you and wish you guys all the best. They're a lot of work but worth it when that monster's gone for a time. Cameron.

KidsComeFirst said...

farmwifetwo -- you went through an ABA program that did not attempt to teach your child some form of functional communication or at least attempt to gain the prerequisites to build this skill? I am really sorry to hear that. I wanted to let you know, however, that as an educator in the field, functional communication is typically one of many goals in the field of Applied Behaviour Analysis. Essentially though, it sounds like you may be using the types of techniques typically used in ABA programs on your own (i.e. if a behaviour is reinforced, it will increase, so if a child mands for an item and gets that item it is likely that the behaviour of "requesting" will increase). That`s really great that your focus is on increasing this type of behaviour because it really helps decrease maladaptive behaviour like self-stimulation, self injury or aggression. I hope you have seen a lot of success with it.

Again, though, I am sorry to hear of your bad experience with ABA. I think as with any profession accountability through research and data and definitely parent involvement on major programming decisions is key and it sounds like the program you were involved in may have been lacking both.

trainspotter said...

I'm sorry to hear about Conor's rough evening... it's hard to see "advantage" in these moments!

As much as I try to focus on all the wonderful things about my daughter (and there are many), these moments are the reality slap of what we're all up against. Our children are special people but there's nothing special about a self injurious meltdown where you helplessly try to redirect behaviour, solve the 'mysteries' of what caused it, while trying to keep your kid from seriously hurting themselves.

I hope the rest of Conor's week goes better!

Bullet said...

"which I overcame simply by loudly commanding him to begin brushing his teeth."

Yes, I find that by keeping my voice calm and firm and steady and telling Thomas what is going to happen and what he does have to do, if I catch him in time then I can divert things. Often it's one small thing that can have a knock on effect on other things. Eg the other day he got upset (understandably) because a little girl dug her nails into him. So he then scratched his own hand a few hours later and couldn't settle at home.
I disagree with Farmwifetwo about communication being something they don't teach the severely autistic. Jacob, my youngest, is being taught PECS, (which incidentally is ABA based) and it is fantastic in terms of helping him communicate his wants. As someone who finds it very difficult to initiate talking helping both my lads to be able to communicate what they need to say, is a key priority.

Anonymous said...

This post says so much! Thank you for sharing these very true facts. I have a son with autism who received intensive therapy for years, and because of it, he is doing very well. Not every story, but I echo your thoughts. I am in my masters program for BCBA and ABA and you know more about how to change behaviors than many people who think they are speaking for people with autism. We have to change their behaviors, as it gives them a better life. Thanks for speaking out!!!

Lisa Jo Rudy said...

Do Dawson and Mottron really say that autism is "always" an advantage or "sometimes" an advantage? Hard to imagine that anyone would suggest that autism is nothing but a fabulous walk in the park, particularly for people like Conor.

Yet there are obvious ways in which at least many people with autism are able to enjoy and engage in life in uniquely positive ways. Simply the fact that your teenaged son enjoys walks with dad is, IMO, an advantage you both share - and perhaps not one you'd share if you had a typical teen.

Lisa

Stranded said...

there is good ABA and bad ABA - the people who oppose it have almost always have really bad ABA experience. Behaviorism is a way of thinking about behavior and it is successfully used by every single human being on this earth be it in marketing, business, teaching, management, or raising kids.
There is a pathological way of doing ABA and there is a natural and progressive way of doing ABA - both produce different results.

This profession seriously needs better regulation of its professionals, because bad ABA or using ABA to teach things that should not be taught using ABA - making teaching abnormal and pathological, is an injustice to a child.

Good ABA is a necessary treatment for autism, that needs to be funded and regulated under medicare, as it is the only treatment for the medical disorder of autism.

The autism advantage argument is a hypocricy and injustice to the majority disabled by their disorder.

Anonymous said...

Well said Stranded. As an advocate I see so much bad ABA which is a crime since good ABA is so effective. The problem with "bad ABA" is that some BCBA's fail to focus enough on the important domain of language in all the areas such as observational learning paired with language, communication attempts and functional communication, joint attention paired with language and social/theory of mind paired with language. These areas take thought and an experienced BCBA who will take the time to understand this and get to know each child individually avoiding that cookie cutter approach when it comes to this vital area. So many ABA centers and providers FAIL to do this. CARD is excellent and understands the importance of this as do other providers but too many are not paying enough attention to this at a young enough age.

Even though people hear differently, Massahcusetts has the worst centers and BCBA's when it comes to understanding this. One large one is rote ABA at it's core and the other well known center does nothing but vocational training and parent feel good fundraisers. It's ridiculous.
NJ and California are the best overall.

Autism Mom said...

I am grateful for the anxiety I had as an adolescent only because it gives me a sense of what my 15 year old might be experiencing. Comes on fast, without warning and from out of nowhere. For all the "could be this" and "could be that" there are no real answers are there.

Anonymous said...

Sorry some of you have had bad experiences with ABA. If it's not effective, it's not truly ABA. Many ABA places do water down ABA and like anything else, people can pollute it. But that doesn't mean true, scientific based ABA is not effective. The author of this blog, from my understanding, has a real passion for true ABA and is an advocate for it.

Anonymous said...

Sometimes the ABA is quality but the caregivers screw it up with no follow through or are counter productive. For instance, Dr. Kristina Chew, the queen of arrogance, recently wrote a post where her son, Charlie, had yet another destructive melt down where he ripped containers out of cabinets and knocked furniture over and what do those brilliant parents do? They increase this behavior by rewarding him with another highly desired bike ride because they make every excuse imaginable why he does these things-e.g. it's dark, it's light, the time has changed, he's tired, he is having a delayed reaction to stress from two Mondays ago, he's being a typical teen, he's brilliant and working through his moods,-you get the ridiculous idea. This is what drives BCBA's crazy. Parents who are so unable to understand the principles behind ABA and give in at any turn. Those parents will be sorry someday when he gets even bigger and stronger.

So, don't knock ABA Farmwife, many times it's not the fault of the science but of the so called caregivers.

usethebrainsgodgiveyou said...

Anonymous, I worked in an ABA Residential school. Those things happened there, even with kind, predictable teachers who had been there years. Autistics kids often just blow up.
The difference is, at the school they were frightened of being caged in a closet. Perhaps if Kristina had a closet, or learned take-down holds like I did, she would be a more effective mother in your eyes...,eh?

Anonymous said...

@usingthebrain-restraints are not the answer and to remind you Chew has stated that she does allow her son's school to restrain him even on the floor in three man holds from what I believe she had written. It seems there is probably total confusion on this child's part a majority of the time and is more than likely the reason for many of his behaviors.

-A

usethebrainsgodgiveyou said...

A parent would have to find it exceedingly difficult to deal with their children in the way the ABA practitioners do, don't you think, A.?

Put yourself in their place. This is their child, their flesh and blood...and although ABA practices make things more predictable, they themselves border on violence. I am standing up for Kristina because she always looks for reasons, never resorting to violence towards Charlie. She has no choice if she is ever to have a respite, to follow the standards set in the school system and to hope against hope Charlie is never harmed. She is intimately aware of that possibility. I wouldn't want to trade places with her, I don't think I'm that strong. She never gives up hope for Charlie, and she never stops looking for answers. It's always easy to judge parenting when it is not your child.

Anonymous said...

She is a narrow minded, arrogant person who judges on a regular basis "using". Just read some of her Care2 posts or what Age Of Autism has to say about her after receiving her lashing. The mockery she makes against parents using biomed or who choose to decline vaccination because of real vaccine damage is vicious. She is a nasty person trying to come across as a vicitm and oh so dedicated mom all while she is bashing others.
So no, "using", I have no sympathy for her but most certainly do for her son.

-A

Claire said...

"Yet there are obvious ways in which at least many people with autism are able to enjoy and engage in life in uniquely positive ways. Simply the fact that your teenaged son enjoys walks with dad is, IMO, an advantage you both share - and perhaps not one you'd share if you had a typical teen.

Lisa"

OY! We should all hope for our kids to have some brain damage so that they will walk with us in the park? Wow. Thankfully, one daughter has to walk with me because she can't on her own, and the other never stopped wanting to walk with me anywhere...and now she's 20.