Doctors are notoriously ignorant about behavioral issues linked to medical issues. The worst are doctors that avoid or downplay SURGICAL procedures that could alleve PAIN because they think it's too traumatic for the autistic patient. This is a total CON JOB and COP OUT and medical neglect. Get it together medical community and educate yourselves.

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.

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..

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.

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

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 ??

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.

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.

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).

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!

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.

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 . . .

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.