How Doctors Fail Parents of Children on the Autism Spectrum
"Is it bad? Will it get better? What do I do about it?" you ask.
"Well, it's definitely a headache spectrum disorder. It might get better on its own, Then again, it could be a lifelong disorder - or a life threatening illness. There's just no way to way to know. You might try exercise and plenty of water."
"But - " you say "I've heard about so many different treatments for headache spectrum disorder. Should I try aspirin? Or meditation? Or maybe it's caused by a brain tumor, and could be cured by surgery!"
Your doctor shrugs. "Well," she says, "you can certainly do some research and try different approaches. Make sure you look at reputable websites. Good luck!" Then she pauses. "Of course, she says, "you'll want to avoid any of those alternative treatments like supplements or special diets." She gives you a reassuring smile. "Why don't you come back in six months, and we'll see how you're doing!
In my experience, this is almost precisely the kind of treatment parents receive when they take their "autistic spectrum" child to pediatricians, neurologists, and other medical practitioners. The spectrum is so wide, the possibilities so endless, and the level of knowledge so slight, that even specialized, board certified doctors have little information or direction to provide. Parents receive a devastating diagnosis, and little else.
When parents as questions about specific treatments, they are told to avoid virtually all of those that are reputed to actually treat or cure autism (that is, all biomedical interventions such as special diets, supplements, chelation, and so forth). But they're offered no direction, no options, no resources - and, often, no hope. Just a reassuring smile and an invitation to return, often at great inconvenience, for a "check up" that seems to have no purpose or likely outcome.
The vast majority of mainstream doctors are absolutely convinced that biomedical interventions for autism are, in essence, snake oil. But unless those doctors provide direction and support, they're literally pushing parents into creating their own treatment plans, based often on a combination of panic, guilt, and headline news.
What if mainstream doctors offered more? What if, for example, they recommended specific interventions, provided a list of recommended therapists, offered information about insurance and other funding options, and even connected parents with early intervention programs available in the area?
What if, in addition, they had on staff (or even knew where to find) an informed individual willing to respond to specific parent questions about treatment options, services available, support groups, and schools? In such a situation, parents might leave their offices less inclined to try anything - no matter what the cost - to "recover" their child with autism.
Until and unless the mainstream medical community is willing to step up to the plate with more than diagnoses and a warning to stay away from "snake oil" treatments, they will continue to fail families living with autism. And sure as night follows day, those families will continue to seek support, certainty, direction and hope - and they will find all those things precisely where the mainstream medical profession tells them NOT to look: in the world of alternative and biomedical intervention.
Comments
I agree and disagree with your lament. I have been professionally diagnosed with Asperger’s, and I have children and siblings on the spectgrum. I agree that when I go to a doctor with some of my odd illnesses which I suspect are co-morbidities of Asperger’s, I do not get any relief, and often get the feeling he walks out of the room and laughs. My tolerance of pain is especially frustrating. When I break a bone or tear a muscle badly, and come in weeks later because I realize it was not a trivial injury and it is not healing on its own, the doctors just can’t deal with something which is broken long after the swelling and bruising have disappeared. They act like there is no injury. I recently injured my wrist very badly, but the doctor did nothing for it. Six months later, my hand was still being completely dislocated from my ulna when someone would shake hands with me.
I disagree with the tone of your article which seemed to imply doctors should or could “cure” autism. We know as fact that there are measurable differences in brain structure and the ratio of gray matter to white matter. This is a physical difference. We would not expect a doctor to be able to prescribe a medicine which would cure a too long nose, or change your eye color, why would you expect to be able to physically change the structure of the brain? We know from testing that autism spectrum people (note I don’t use the word “sufferers”)lack functioning mirror neurons. We know beyond any doubt that the brain is wired different.
We accept that different breeds of dogs have been bred for specific hard-wired neural traits. You would have a tough time training a pit bull to be a sheep herder or a pointer or a setter, and certainly no pill would convert a pit bull into a sheep herder. Why do some parents think that somehow medical science could change the autistic brain? What are they going to do, slice away a little of the extra gray matter?
We get anecdotal reports of children improving after chelation- “Mommy is going to take you to the doctor where they will stick things in your arm and it will hurt a little and might make you nauseous, but we are doing this because you act autistic”. Ouch, should we be surprised they improve their behavior to avoid more “treatments”. I worry that chelation my be causing brain damage, the modern equivalent of the pre-frontal lobotomies which used to be popular in the thirties. We hear anecdotal reports of improvements in behavior and learning after weeks or months of intense one on one behavioral modification, so long, grueling and confining it borders on torture. I remember my parent had great success with procedures which involved pain and or restriction of activities, they called it “spanking” and “grounding”. It wasn’t until Dr. Spock’s book in the forties that physical discipline was made politically incorrect. Maybe spanking is truly unnecessary or even harmful for a neurotypical child, but what do you do with a child who does not gauge emotions unless it reaches extremes? This alone would interfere with learning right and wrong from an early age. We know that they lack mirror neurons- they cannot put themselves in someone else’s shoes until they are old enough for it to be explained to them in a logical argument. If they can’t put themselves in someone else’s shoes, cannot understand hurt and disappointment and then respond with guilt, this again disrupts learning of proper behavior. One of my brothers told me he didn’t grasp the concept of other people’s emotions until he was in grade school, and watched as a group of kids teased a girl until she burst into tears. Only then did he have that ah-HA moment of connecting how he felt when teased to how others felt.
The neurotypical world is just as guilty of “autistic” behavior- they seem incapable of seeing the world from the perspective of an autistic person, even though the mechanics of these defects have been adequately defined. It is very hypocritical for neurotypicals to require autists to learn how the neurotypical mind works in order to integrate into society, yet neurotypicals cannot seem to learn how our minds work- they cannot break from viewing us through a neurotypical prism- they cannot accept our differences and they feel the need to “cure” them. They cannot grasp what it is like to live in a household with children who are nocturnal, who are clever enough to unlock anything, reach anything. I came home once to discover my son had carved a stock, cut a stainless steel whip antennae and fashioned a bow, hollowed out the stock and installed a trigger and a catch, nocked the ends of the steel bow to catch a string, and fletched bolts of sharpened steel rods with feathers- a functional deadly weapon, and he was only eight or nine years old! How do you “cure” this?
A head ache is what a normal family practice doctor would treat. It’d be like asking them if a broken femur bone would heal properly without surgery. You’re asking the wrong doctor. I’d have to say my son’s pediatrician knew enough of the signs of autism to suspect it for some time before she mentioned it to me, and when we determined other tests couldn’t be the result, she gave me a card for Early Intervention. That pediatrician was by no means an expert on autism nor would I expect her to be. When my son was diagnosed, I was handed intervention options but of course some of them I didn’t agree with anyway nor could I ever afford them.
I think regardless as to how good or bad your pediatrician/ doctor is in autism knowledge, you’re still going to feel hopeless when you’re first told your child has autism. I don’t think any doctor is ever going to take that away nor should they be held responsible. This is why so many doctors regret ever having to tell a parent their child has autism. I ran into two of these doctors that based on reaction, wouldn’t tell me a diagnosis. The third had the guts to tell me and not fear my reaction.
As for specific treatments/ snake oil, there’s many out there that’ll take advantage of a parent and that hopelessness. Since all children are different, providing choices would be very difficult. For instance I seen improvement in my child without ’snake oil’ treatments. The real issue here is parents still need to research and decide what would most benefit their own child, and seek a doctor in a specific field to ask questions. For instance I took my child to a specialist to see if GF/CF diet would benefit him, we did tests.
I disagree that these doctors are failing children by not offering information on ’snake oil’ treatments or agreeing with it, or offering a recovery. Many of the snake oil treatments have not been fully studied and last I knew, there’s improvement and progress with autism, not recovery.
maybe I wasn’t clear in what I wrote: I am not suggesting that doctors recommend chelation because it offers hope! what I am suggesting is that a developmental pediatrician, neurologist, or other autism specialist should be ready and able to provide not only a diagnosis but direction, support, and even referrals to people, treatments and educational programs of which they approve.
When they send parents home with a diagnosis and a “gee that’s too bad - good luck,” they shouldn’t be surprised when parents head off to find treatments from other people who say they DO have something to offer.
In other words - telling parents “it’s not vaccines, and no diet, supplement, chelation or oxygen treatment is going to help” may provide that parents with information - but it does NOT provide them with any idea of what to do once they leave the doctor’s office.
Granted that there are generalized “what to do” packages available, no such package is appropriate for any individual situation, location, or set of circumstances. Parents need counseling - and doctors should, at the very least, be able to tell parents where to go to find that counseling (or not complain when parents go and find it themselves within the biomedical community!).
Lisa (autism guide)
Actually, all those choices you mentioned often requires testing prior and that diagnosing doctor would either have to refer the parents to one who could conduct these or ones who specalize in it.
A psychiatrist diagnosed my child and they by no means specialize in diet, chelation or bio medical.
I think too that when parents do go outside of mainstream, those regular doctors are only giving their opinions of it and parents interpret it to mean they oppose it or it’s their ‘complaints’ of it and maybe that they do, but I’d imagine as a medical professional, they’re obligated to give their own medical opinion. Maybe they do know some things that one should listen to?
Mainstream doctors are trained in medical school to specialize and treat the body as a collection of parts rather than as a whole person.
As Bill notes, there are co-morbid (co-existing) diagnoses and physical problems that frequently accompany and contribute to the behavioral, cognitive, and communication/social problems which lead to the autism spectrum diagnosis. Some of those co-morbid diagnoses include gluten enteropathy, intestinal hyperpermeability, malabsorption syndrome, chronic candidiasis, IgG food allergies (especially to wheat, dairy, soy, and brewer’s yeast), asthma, chronic viral and bacterial infections, and parasitic infections in the GI tract. Oh, and there there is heavy metal toxicity (including, but certainly not limited to mercury). There has been WAY too much focus on ethyl-mercurcy (thimerosal) and not near enough focus on things like manganese from soy formula, lead poisoning from coal power-plants and maternal lead being passed to fetus and infant via breast milk, etc.
They emotional uproar associated with the mercury-vaccine debate has distracted much of the main-stream media (and subsequently the citizens of the world) from the other issues that, when addressed, often produce remarkable improvement in over-all well-being. FYI, Bill - the most likely source of your very high pain tolerance is from endogenous opiate response associated with food allergies (casein, gluten, and soy are the most frequent culprits). This, combined with alcohol produced by candida overgrowth serves to give you (and our children - mine included) your own built in source of morphine - which is great if you’re in pain, but not so great if you are 5 or 6 and trying to learn the alphabet or numbers or names of colors.
There is more to biomedical interventions for autism than chelation - MUCH more. And yes, mainstream doctors are failing our children and families, but it’s not their fault. The majority of physicians currently practicing have never taken a single class in nutrition - it’s not required.
There are, however, increasing numbers of traditionally-trained medical professionals who are willing to look at the science and review the ongoing research. These are the ones who are not willing to simply sit on their laurels (or initials) once they leave medical school, assuming they have nothing more to learn. You just have to look harder for them, because when they are willing to chance stepping out of the box, they become targets for all kinds of ridicule from their peers. That alone should be reason to seek them out.
Sally - there is one traditionally trained (Mayo trained, actually) psychiatrist who is willing to treat children comprehensively. I know because I work with him and I am the biomedical consultant (we are both DAN trained) in his office. www.cadywellness.com
Blessings to you and especially to your children. Never accept ignorance. In the case of autism, it is far from bliss.
Marcella Piper-Terry
We are both DAN trained.
Translation: We attended an eight-hour conference. That’s all it takes. You don’t even need an MD degree. And ARI has no way to assure the competence of its practitioners or the effectiveness of the unproven therapies offered by DAN conference attendees.
Health care fraud is an $80 billion a year racket in the US, and the bad guys know about autism. Be careful out there, stick to real evidence, and listen to real doctors.