It’s Official: Pediatricians + Autism = Clueless

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It’s Official: Pediatricians + Autism = Clueless

By Kelli Ann

According to a current article in Pediatrics, “Medical Homes for Children With

Autism: A Physician Survey†(HERE), most pediatricians report a “lack of

self-perceived competency†in treating children with autism; yet ironically,

the premise of the article states “primary care physicians can enhance the

health and quality of life of children with autism by providing high-quality and

comprehensive primary care.â€Â  [Question:  How the hell can that be possible

if they don’t know what they’re doing?]  

Of course as most of you know by now, the term “medical home†is a key

component in a “bill†poised to be introduced by Senators Durbin and Casey

(HERE).  What you may not know is the AAP will get to determine what

constitutes a “comprehensive approach to care and coordination†for children

with autism:

Definitions: (8) MEDICAL HOME.—The term ‘‘medical home’’ means a

concept or model of care delivery that includes an ongoing relationship between

a provider and a patient, around-the-clock access to medical consultation,

respect for a patient’s cultural and religious beliefs, and a comprehensive

approach to care and coordination of care through providers and community

services, as defined by the American Academy of Pediatrics.

In my opinion, there’s no better way to gauge AAP leadership than to look at

its members. And by the looks of this article, pediatricians are clueless and

they know it.  Here are some choice highlights:

• Autism included all the autism spectrum disorders: classic autism, Asperger

syndrome, and pervasive developmental disorder–not otherwise specified. We

compared children with autism to children with other neurodevelopmental

conditions and those with chronic/complex medical conditions. Examples of

neurodevelopmental conditions listed were: hypoxic ischemic encephalopathy,

cerebral palsy, mental retardation, and attention-deficit/hyperactivity

disorder. Examples of chronic/complex medical conditions given were: congenital

heart disease, chronic asthma, early cystic fibrosis, and diabetes.

AAP Reality Check:  “Autism†IS a chronic and complex medical condition. 

If you can’t get that basic fact correct, is it any wonder your docs are

confused and parents are distrustful? 

• Consistent with the parents of children with autism who expressed low

confidence and dissatisfaction with their children’s physicians, physicians in

this survey reported feeling less competent providing primary care for children

with autism compared to children with neurodevelopmental conditions and

chronic/complex conditions.

 

AAP Reality Check: See reality check above just in case it didn’t sink in the

first time you read it.     

 

• Innovative models of coordination and reimbursement are needed,

particularly to meet the complex needs and high medical costs of children with

autism.

AAP Reality Check:  I hope you don’t call in the same “experts†who

devised this survey which separates “autism†from “neurodevelopmental,

chronic and complex medical conditions†when you decide to develop those

innovative models.

• Proposed approaches include care teams and specialty medical homes that

collaborate with primary care physicians.

AAP Reality Check:  Reread the survey.  What part of “incompetent†don’t

you understand? 

• Similarly, in another survey, three quarters of parents of children with

autism expressed a lack of confidence regarding their child’s physician.

AAP Reality Check:  Even if you do devise a new, innovative model, good luck on

getting parents to participate because it looks like 75% aren’t going to touch

you with a ten-foot pole.

 

• Perhaps related to family trust and satisfaction, physicians reported that

families of children with autism were more likely to be “skeptical of vaccines

and traditional medicine†and noted these as greater barriers to caring for

children with autism than with other medical conditions.

AAP Reality Check:  Duh!  Wonder why??  Maybe because we saw our children

regress after vaccines and we’re recovering them with non-traditional

approaches??

• Parents of children with autism and conventional medicine have sometimes

been at odds in areas such as the prevalence of autism, its etiology, and the

search for specific medical interventions in autism.

AAP Reality Check:  And you wonder why we aren’t supporting an AAP directed

“medical home model†in the current Durbin/Casey bill. 

• The American Academy of Pediatrics advocates for family centered care,

including sensitivity, respect, and open communication when confronting

differences in opinions around treatments, vaccines, or philosophy.

AAP Reality Check:  Good luck on rectifying the differences.  And instead of

focusing on “sensitivity, respect and open communication†(it hasn’t been

working so far) I’d suggest you put “medical competency†and basic

definitions of autism†on the top of any future “to do listâ€.

 

• Surveys suggest that over half of all children with autism are being

treated with Complimentary Alternative Medicine (CAM). CAM may be particularly

challenging when a physician believes the treatment is not in the best interest

of the child, often because of a lack of research or the potential for adverse

effects.

AAP Reality Check:  Did you get the first half of the statement: 50% of parents

are using CAM.  Do you think we give a “flying crap†what YOU think when we

are successfully recovering our children??

 

• Practice parameters and organized medical groups must continue to address

the challenging subjects of both CAM and family skepticism of vaccines and

traditional medicine. Physicians should continue to collaborate with families to

enhance family trust and satisfaction. Such efforts may result in improved

parental satisfaction and medical home care and, ultimately, enhanced health and

quality of life for children with autism.

AAP Reality Check:  Trust and satisfaction??  In your dreams.

Generation Rescue will continue to fight ANY “medical home model†that

benefits organizations like AAP who, quite frankly, are clueless on how to treat

our children.  We always knew it but it sure helps to see it all there in black

and white. 

Thanks Pediatrics.  This article couldn’t have come at a better time!

Kelli Ann is the D.C. Political Liaison for Generation Rescue

Love, Gabby. :0)

http://stemcellforautism.blogspot.com/

 

" I know of nobody who is purely Autistic or purely neurotypical. Even God had

some Autistic moments, which is why the planets all spin. " ~ Jerry Newport