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Autism. Protest.

When Autism Behaviors Are Physical Pain

Meltdown By Libby Rupp

When a child has a high fever or an oozy rash, doctors typically work to find the cause and end the problem. However, when a child is flapping or walking on their toes, the symptom is considered normal behavior for autism and the search for answers ends there.
 
This week we had an encounter that, on a small scale, typifies the struggles our kids have. I took my daughter to Occupational Therapy and she came out an hour later incessantly chewing her tongue. The therapist was talking about her new stim and suggesting therapeutic options to address it. Meanwhile, I was asking my daughter if there was something wrong. After repeatedly getting no reply, I shoved my finger in her mouth and found several pieces of lettuce stuck in her gums and teeth. She had to deal with that discomfort for an hour because of it was deemed 'typical autistic behavior' instead of considering that there might be a problem.

This past year my daughter went through a period of severe aggression.  The “professional” response: family counseling and behavior modification.  Real issue:  she had kidney stones and once she received treatment, the aggression ended.

Dr. Krigsman has found gastrointestinal disorders in children that posture. See Figure 13 ((HERE

Behaviors are symptoms. Behaviors are communication.

Listen to your children, even if they can’t speak. Push your doctors, therapists and teachers to use your kids’ behaviors to search for underlying problems. Behaviors are sometimes the only clue we have in helping our children.

Libby Rupp is the mother of an awesome little girl and an autism advocate.  She maintains the website www.herbsforautism.com

Comments

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Grace Green

This is a very interesting article. I have always thought that we should not be referring to autism as a behavioural problem (or even 'autism', actually!) If we took a pet to the vet (veterinary surgeon) with these kinds of behaviour the vet would quickly be able to work out the cause. As our doctors are so reliant on language it's little wonder we auties can't communicate with them.

Christina Lott

This really hits home. When my little guy was 2, he went through a period of suddenly going from happy to screaming and slamming his head into things, he even gashed his head open on the entertainment center. I kept getting "self harm behaviors are pretty typical for nonverbal kids", but I know that it's typical because they are frustrated about something they can't tell you, and I wasn't going to give up on trying to figure out what he wanted to tell me. The magic moment occurred when I asked a new neurologist a question many doctors so far had hemmed and hawed about with a lot of " we just can't tell" and "I don't know how we could diagnose that in a nonverbal child". My question, "could he be having headaches?" finally got a response that was helpful "I'm not sure, but let's try replacing his claritin with cyproheptadine and see what happens" (cyproheptadine is an antihistamine that happens to have a side effect of preventing migraines in children). Within days the behaviors stopped and he was back to his old self.

Candau

Very informative site! My son was diagnosed with autism at 19 months. Began having seizures at 24 months. Began biting self and banging head into floor and walls at 33 months old. Gee...I wonder if there's a connection.....He's 7 now. Not one doctor has ever made the connection. Let's get the word out. I wonder how many of our autistic kids are suffering from "sub clinical seizures" which are causing them to act out and these behaviors may or may not be helped with the right combos of seizure meds...not saying the autism would be cured, but it makes sense that if our children have autism they are naturally prone to be more sensitive to things so what may be slightly tolerable for the non autistic could set off horrible behaviors in the autistic person....underlying medical issues are definately a huge part of autism seldom discussed

sarahsam

The picture you used for your post reminds me of my wife or me at Target and the Zoo and the school and the park and man do I relate to that picture..

Cathy R.

Amen.

AnaB

Excellent awareness post. When my son turned four he became severely aggressive, biting and scratching teachers, other kids, us. This went on for three years and the doctors kept saying, "oh, that's just the Autism. Sometimes people with Autism are just like that. Well, 3 years later his new ABA therapist tells us, "I've seen this before. He's having seizures. Get him an EEG ASAP." Sure enough, she was right - his brain was seizing 24 hours a day and he was in excruciating pain. The thing is, when he was 4 before this all started my son was high functioning, yet 3 years later he was in diapers and categorized as severe...all this seizing stalled some of his development and regressed other of it.

What is this a product of? Pediatricians don't treat Autism so they don't know how to recognize when a kid needs a neurological consult. If a parent doesn't know to specifically ask the ped. for a referral, as I did eventually, often times it won't happen by the doctor's own initiative.

If such a high percentage of Autistic kids have subclinical seizures why is it not routine for them to be screened to rule these out? I'll tell you why: Autism is not covered by insurance so Neurologists, generally speaking do not treat that condition. More examples of the medical neglect our kids have to put up with.

SARAHSAM

Libby, your story has timely relevance for me.
I attended a seminar last week that featured Dr. Elizabeth Mumper, M.D., FAAP. from the Rimland center, the women is a SAINT! Dr. Allen T. Lewis, M.D., F.A.A.P. – Medical Director from the pfeiffer institute. His compelling personal story(has a child on the spectrum) and total support of the value of biomedical treatments was inspiring. Sophia Colamarino, vice president of research at autism speaks spoke as well and you have to see her to believe her. Last but not least Dr. Arthur Krigsman from thoughtful house in Austin TX.

This seminar was in a major medical center, the same center that only 2 1/2 year ago couldn't see anything wrong with my son as he spun around in silent circles in the pediatricians office and told me-lets see what happens in the next six months.

All the speakers were all excellent and if anyone is on the fence regarding biomedical treatments you won't be after hearing them speak.

Dr Krigsman was the highlight for me. This doc definitely gets it and discussed in depth the very issue your post is about-it was validating on the most fundamental level. It disgusted me that no gastro docs in our area bothered to show up-even though the seminar was in a major hospital-but I was not surprised. I already know they are useless to my son.

Our kids odd behaviors are often due to them being in pain and or sensory disorientation. Dr Krigsman visited this issue over and over again. He showed many slides of the posturing behavior of non verbal children in pain and it was heartbreaking to see them as I'd seen this behavior in my son many times-and still do.
These doctors get it and I'm taking my son to thoughtful house.

Tim Kasmeodel

Roger Kulp,

Reading your comments I an am constantly rminded that you should submit an article - anything - to AOA.

You appear to have a wonderful insight into our children through your own experiences. No need to feel like you have to be a proffessional - I mean, come on, they have even posted my rants, and I am just a pissed off dad.

You seem to have wonderful ideas. Pick a topic and begin your new life as an AOA blogger!


Tim

Tim Kasmeodel

Libby,

Thanks for the post.

Behavior is EVERYTHING when it comes to
figuring out out kids health - not to meniton we have to inspect the color, consistency, quantity, and frequency (did I leave something out?)of our kids crap???


Laura and I could (and maybe should) post an AOA article on how Thomas is doing after our April visit to Dr.Krigsman at Thoughtful House in Texas, which was of course a segment on the late August Dateline episode.

Quick update - is he is doing better - long way to go as far as total GI health, but considering the behavioral portion of it, it is the difference between night and day.

Thank god for doctors (and therapists) who will listen to parents. As far as I am concerned, those who think we are making this up can go....... Oh, never mind, I think they can figure out what to do with "themselves" on their own.

Tim (FYI - Laura will not approve of the "strong" language)

Taximom

I had an awful episode of health problems that included B-12 deficiency, calcium deficiency, and Vitamin D deficiency.

Since my symptoms included fluctuating hearing loss, I was put on prednisone, but a separate medical problem (a burst ovarian cyst that my doctor at first thought might be appendicitis), I was taken off the prednisone (after having been on a high dose for 4 days).

After 24 hours, I truly thought I was going to die. It was kind of like being dizzy--but the room didn't spin. I was nauseated, shaking, and I felt like I was about to pass out FOR HOURS (but never did).

The only thing I felt like doing was BANGING MY HEAD to make the awful feeling go away.(Sound familiar, anyone???)

And all I could think was, this must be what an autistic toddle feels like, but they don't have any words to communicate even that they feel bad.

Naturally, every doctor I saw said that my symptoms COULDN'T POSSIBLY have anything to do with either vitamin deficiencies (even though they were there in the blood work) or prednisone withdrawal ("it can't happen that quickly").

They decided to call it an idiopathic syndrome instead, and offered me a cortisone shot in the ear (no, thank you).

And when the symptoms went away after supplementation--the doctors couldn't have cared less--and they still called it an idiopathic syndrome.

What does it take to make a doctor see when he refuses to even look ??

Leslie

Libby, my mantra is "these children never receive a proper medical investigation". It drives me crazy. We are just uncovering, almost eight years after my son's diagnosis, serious medical issues that should have been tested and dx'd YEARS ago. Complicated story which is probably all too common. Thanks for the post!

cmo

We just found our our child has a urinary track infection, not severe but very treatable.

It is not a bad idea just to test the urine for a few basic things every 6 months of so.

Schoolteacher in NYC, posing as an MD FAAP

Ah, another gathering of those "dangerous suburban moms" who, as members of the "cult of the amateur" dare to think they're "better than the professionals" from their attendance at "Google University". Your research solved your kid's problem, you say? I'll get back to you on that...

Long live ABA

I read Noam Chomsky's critique of Singer a few years ago and it's stuck with me (Chomsky obviously wrote this in his capacity as the "Einstein of linguistics", not in his role as political analyst).
Chomsky believed that the capacity for language is innate to the species and the need to communicate itself is innately social and emotional. In autism, both social motivation and the areas of the brain responsible for language are damaged, so our approach was to nurture social motivation as part of language enrichment. Fortunately, our kids still had some capacity to be socially motivated left-- there was a glimmer there-- and it's a thread we grabbed and yanked on for all it was worth. And one big part of that was to interpret behaviors as attempts to communicate, to show we cared if they were in pain, to bear that in mind when they showed reluctance to perform certain feats-- to build trust in other words.

Skinner really believed that human beings were blank slates and all behavior, even language, were acquired through a series of rewards and punishments. There's also a built in cynicism to this: all reluctance to perform a task is "manipulation" on the part of the child. It's a ridiculous theory, but it's the underpinning of ABA.

ABA as an approach can be limited due to some practitioners' religious adherence to a false theory. If the theory were ammended, I'm sure that the practice would be even more successful. But to view our kids as having *damaged* brains-- not just naturally *limited* brains-- is politically rife. To see behavior as communication, practitioners would have to concede that our kids might be in pain and suffering from health conditions.

I've seen more than one ABA therapist go berserk when confronted with this possibility. Their circuit boards start melting-- does not compute! Does not compute! They get angry-- very much like someone in a cult becomes angry when their brainwashing is challenged. That kind of reaction smacks of brains trained on illogic: they don't have a retort so they get pissed off. We had one BCBA who was so angered by our request that therapists not wear synthetic perfume, hairspray, etc., that she came to sessions soaked in commercial fabric softener. She must have had to go out and purchase it specially since she was otherwise a crunchy granola type. And she was cruel to the kids. She's very well known in our area and many of the other professionals "love her"-- so we figure hers is a pervasive stance.

Fortunately the ABA therapist we worked with knew exactly what this woman was. Our therapist also made fun of Skinner and applied the "good parts" of ABA really intuitively. She got our son writing, squeezed so much out of him that others couldn't. Her view was understandable because she'd been vaccine injured herself: at twenty she'd gotten a battery of travel shots and developed severe IBD and seizures. She knew exactly when the kids were sick, when to push, when to pull back. She was literally inventing a new form of ABA, one that gave credit where credit was due to biomedical. Our son stopped flapping his hands at one point after a round of chelation, for instance, and she agreed it was probably his brain healing: she had to-- we hadn't even targeted the behavior. I always thought that hand flapping was neurological, as in cerebral palsy and other conditions.

Don't get me wrong-- at its best I think ABA is like great stroke therapy for rebuilding damaged circuits in the brain...particularly if the person applying it even has that view. There are a lot of really conscientious therapists. But lately ABA seminars across the country are receiving concentrated brainwashing in the "it's not environmental/ biomedical is a sham" vein.

I think a new form has to emerge, one that incorporates the best of both biomed and ABA and dumps the constraints of an old, debunked theory of human behavior. ABA is dead. Long live the new ABA.

Roger Kulp

Somebody might consider using dogs as a warning or deterrent in such circumstances, just as you do with seizures.I have been going through casein withdrawal in the last couple of days.Cold turkey.This has included a bit of head banging and such.A few of these times,my chihuahua has climbed on me,and begun licking the daylights out of me-and nobody has trained him to do this.

Angela

Penny - I had the same exact experience with homeschooling. It really opened my eyes to the physical symptoms my child experienced on a daily basis. And while I had him here close by me, I was able to hone in on the "triggers."

When he was in school I had to rely on teachers who, though they meant well, often had many different ideas and opinions of what was going on. It was frustrating.

Not to mention, the food they eat in school is terrible. Parents were constantly bringing in cupcakes, candy, etc. It's really hard on a celiac kid . . .

He's doing so well now - makes me truly grateful for having had the opportunity to homeschool (never thought it was something that I would do but we love it).

Penny

Judith Endow asks what if we defined diabetes as a behavioral problem and made diabetics work for their insulin as a reward at a table? In her presentations, she reminds parents and professionals to see the behavior as communication and not behavior to be shaped and extinguished. http://smallbytes.net/~bobkat/makinglemonade.html

We see "behaviors" increase w/ strep throat and other illnesses. I'd have never made some of the associations between increased sensory cravings and illness had I not made a decision to homeschool.

Allison

Thank you Libby!!

I too was reminded this week of this kind of cluelessness. One of the aides in my son's class saw him trying to put his fist down his throat and gagging when being given his school dose of anticonvulsants. She recognized that something was wrong and had the nurse call me.

She went against the advice of the completely uninformed/every symptom is a new stim/behavior without cause, BCBA who stated, "Maybe he likes the feeling of his fist in his mouth...." Idiot!!! He had a nasty red raw sore throat which followed with a fever and 3 days of not eating or drinking. Hmmmmm...some behaviorists drive me insane from their cluelessness. Thank God I have one advocate for him in that classroom!

Roger Kulp

As an autistic adult who is verbal,and has many serious medical problems,that are probably immune related,AND still struggles with stuff like head banging,and hand flapping,I don't know if it's so much acting out pain,as it is these behaviors are a sort of reflex action, triggered by inflammation, pain and other disease processes.Something you can't control,like a tic or seizure. People who have tics or seizures can often talk while they have them,and tell you what is going on.

This is more how I would describe how I experience it.It has always been like this for me.It may be different for others.
Especially those who are nonverbal.I am verbal,I can communicate about pain and medical symptoms, but I still do this stuff once my medical symptoms get severe enough.

It's sort of like these people who say everybody stims because they are happy.For some of us stimming is not only caused by stress,but is very stressful itself,and goes along with decreased cognitive cognitive function.

You shouldn't always assume why somebody does something,even if they cannot communicate why.

nhokkanen

Thanks, Libby, for this important reminder. Isabella is so lucky to have you for a mom.

In 2002 when my son's aggression became too challenging, I enrolled him in a tantrum study at the University of Minnesota. Halfway into it I got my son's autism diagnosis and dropped out of the study.

Later that year after I'd been reading about progressive autism causal theories, lab tests from Pfeiffer Treatment Center indicated my son was deficient in several key minerals and vitamins. Within two weeks of supplementation his negative behaviors diminished drastically; we had an almost-normal, tantrum-free Christmas.

When I communicated that information to the U of M researcher, I received no reply. His pediatricians were similarly apathetic. His EX-pediatricians.

Teresa Conrick

Thank you, Libby for posting on such an important topic. Megan has had so many behaviors and some were quite dangerous- head banging, biting, throwing furniture down the stairs, etc. All of these were related to an internal, biochemical reason ie-Strep, Clostridia, a food intolerance, etc. She has none of these behaviors now as her diet is clean of those substances that cause inflammation and she is monitored for beneficial vs dysbiotic bacteria.

To think that many parents still don't know this because their doctors do not understand or believe that autism is a bio/neuro inflammatory disorder is so sad and frustrating. That means that there are kids who continue to bang their heads and are given helmets instead of medical labs or tests, thus no actual TREATMENT since the cause of this horrifying behavior is considered "autism". How crazy and archaic is that?

Angela

You are so right Libby!

Alot of my child's "foggy" behavior disappeared when we took gluten out of the diet!

We later found out this child probably has celiac disease. It took our nutritionist (not our doctor!) to suggest this possibility.

I've learned to look deeper . . .

Stagmom

A few years ago, Mia was acting up while going out to the bus. She kept kicking off her boots. I got angry. ThenI checked her boots. They were new and I'd left a ball of paper tucked into one of them. She was in pain. She told me by kicking off her boots.

Andrea

Libby,

You are so right that behaviors are communication. We have been through so many bad behaviors that once we figured out what the problem was the behaviors stopped.

So many times those behaviors get written off as just being autistic. I can't help but think about the parents who turn too soon to potent behavioral medications because they didn't know or couldn't find the source.

I hope many parents will read your article and search a little further before giving in to the drugs.

Not saying drugs aren't necessary for some. But, too many times they are the first solution when they should be the last.

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