Post by kwombles on May 17, 2009 7:00:29 GMT -5
Harrington et al. (2006).
Parental beliefs about autism: Implications for the treating physician. Autism 10 (5): 452.
“Discussion
Many parents in our survey expressed a belief in one or more specific
causes of their child’s autism, and most of them had tried numerous treatments.
Study parents reported a much greater use of CAM treatments than
has been previously reported for children with autism and other developmental and physical disabilities (Levy et al., 2003; Nickle, 1996), possibly because of differences in survey techniques or demographics of study subjects. Three-quarters of parents expressed little or no confidence in their primary care physician’s ability to recognize autism, and our data suggest that a greater perceived delay in diagnosis may lead to a decrease in this confidence and an increase in the use of CAM therapies. The following comment conveys one parent’s perception: I believe it was a lack of knowledge on the physician’s part that delayed a diagnosis for my child. Even after I expressed my concerns, I had to fight for referrals to specialists and still did not receive them. I had to go it on my own and essentially look past my regular physician toward other alternatives.
Confirming the diagnosis of autism may require a protracted evaluation
period, involving specialized screening tests and the help of numerous
professionals (Seltzer et al., 2000). Study parents reported a median delay in diagnosis of about 9 months. While this finding suggests an improvement over previously reported delays of 1 to 5 years (Howlin and Moore, 1997; Yeargin-Allsopp et al., 2003), any diagnostic delay due to watchful waiting and failure to refer for more specific testing may jeopardize a physician. Delays can also deprive the child and
family of benefits such as parent support groups, genetic counseling, and intensive behavioral training (McEachin et al., 1993).
Recommendations
Given that there are few convincing demonstrations of treatment efficacy for autism other than early intensive behavioral therapy, many parents are understandably frustrated with conventional medicine. There are, however, three positive steps physicians can take. They can (1) help expedite the diagnosis by conducting a preliminary evaluation as soon as a parent expresses concern, (2) make timely referrals to a specialist to confirm or rule out the diagnosis, and (3) provide information about autism and refer parents to additional resources if the diagnosis is established.
To minimize unnecessary delays, physicians should consider recent
guidelines urging recognition of early signs of autism (Committee on
Children with Disabilities, 2001). In addition, they might adopt a policy
of administering an autism screening test when a parent first expresses
concern about their child’s development (Baird et al., 2000; Robins et al., 2001). While such tests have not been sufficiently audited for universal screening, they appear to be adequate for helping to detect autism in the subset of children whose parents report developmental or behavioral problems (Scambler et al., 2001).
To sustain an open, trusting relationship with parents of children with
autism, physicians should inquire about parental beliefs concerning
etiology and learn what treatments the children are receiving. Using a nonjudgmental tone will maximize a physician’s chances of uncovering critical information needed to avert potentially harmful practices, such as withholding immunizations, delaying the use of antibiotics, or using unconventional therapies that could impair or injure the child (e.g. dietary restrictions that may cause nutrient deficiencies or megavitamin regimens that can produce toxic levels: Mcguire et al., 2000). Investigators have offered helpful techniques to aid physicians in eliciting CAM usage (Levy and Hyman, 2003).
Limitations
We surveyed parents from predominantly middle and upper income
households who chose to attend an educational conference. Our findings
therefore reflect the views and behaviors of a resourceful, actively engaged group. Since beliefs about autism may differ in other socioeconomic groups, future studies should target other populations.
Since there were limited existing instruments that measure or address
parental beliefs about autism, we had to develop a survey instrument
specifically for the present study. As a result, we are not able to report previously published validity and reliability statistics.
Conclusions
The prevalence of autistic spectrum disorder in childhood now exceeds
that of Down’s syndrome, diabetes, or cancer (Filipek et al., 1999). Since autism is no longer a rare disorder, physicians should be screening at the
18 month visit. Making the appropriate referral for further evaluation as
soon as possible after a child begins to exhibit signs suggestive of autism
should increase parental confidence in the child’s physician while assuring timely access to intensive behavioral therapy, genetic counseling, and support groups.
Acknowledgement
This study was supported by Health Resources and Services Administration
Award 2D54HP00022.”
Parental beliefs about autism: Implications for the treating physician. Autism 10 (5): 452.
“Discussion
Many parents in our survey expressed a belief in one or more specific
causes of their child’s autism, and most of them had tried numerous treatments.
Study parents reported a much greater use of CAM treatments than
has been previously reported for children with autism and other developmental and physical disabilities (Levy et al., 2003; Nickle, 1996), possibly because of differences in survey techniques or demographics of study subjects. Three-quarters of parents expressed little or no confidence in their primary care physician’s ability to recognize autism, and our data suggest that a greater perceived delay in diagnosis may lead to a decrease in this confidence and an increase in the use of CAM therapies. The following comment conveys one parent’s perception: I believe it was a lack of knowledge on the physician’s part that delayed a diagnosis for my child. Even after I expressed my concerns, I had to fight for referrals to specialists and still did not receive them. I had to go it on my own and essentially look past my regular physician toward other alternatives.
Confirming the diagnosis of autism may require a protracted evaluation
period, involving specialized screening tests and the help of numerous
professionals (Seltzer et al., 2000). Study parents reported a median delay in diagnosis of about 9 months. While this finding suggests an improvement over previously reported delays of 1 to 5 years (Howlin and Moore, 1997; Yeargin-Allsopp et al., 2003), any diagnostic delay due to watchful waiting and failure to refer for more specific testing may jeopardize a physician. Delays can also deprive the child and
family of benefits such as parent support groups, genetic counseling, and intensive behavioral training (McEachin et al., 1993).
Recommendations
Given that there are few convincing demonstrations of treatment efficacy for autism other than early intensive behavioral therapy, many parents are understandably frustrated with conventional medicine. There are, however, three positive steps physicians can take. They can (1) help expedite the diagnosis by conducting a preliminary evaluation as soon as a parent expresses concern, (2) make timely referrals to a specialist to confirm or rule out the diagnosis, and (3) provide information about autism and refer parents to additional resources if the diagnosis is established.
To minimize unnecessary delays, physicians should consider recent
guidelines urging recognition of early signs of autism (Committee on
Children with Disabilities, 2001). In addition, they might adopt a policy
of administering an autism screening test when a parent first expresses
concern about their child’s development (Baird et al., 2000; Robins et al., 2001). While such tests have not been sufficiently audited for universal screening, they appear to be adequate for helping to detect autism in the subset of children whose parents report developmental or behavioral problems (Scambler et al., 2001).
To sustain an open, trusting relationship with parents of children with
autism, physicians should inquire about parental beliefs concerning
etiology and learn what treatments the children are receiving. Using a nonjudgmental tone will maximize a physician’s chances of uncovering critical information needed to avert potentially harmful practices, such as withholding immunizations, delaying the use of antibiotics, or using unconventional therapies that could impair or injure the child (e.g. dietary restrictions that may cause nutrient deficiencies or megavitamin regimens that can produce toxic levels: Mcguire et al., 2000). Investigators have offered helpful techniques to aid physicians in eliciting CAM usage (Levy and Hyman, 2003).
Limitations
We surveyed parents from predominantly middle and upper income
households who chose to attend an educational conference. Our findings
therefore reflect the views and behaviors of a resourceful, actively engaged group. Since beliefs about autism may differ in other socioeconomic groups, future studies should target other populations.
Since there were limited existing instruments that measure or address
parental beliefs about autism, we had to develop a survey instrument
specifically for the present study. As a result, we are not able to report previously published validity and reliability statistics.
Conclusions
The prevalence of autistic spectrum disorder in childhood now exceeds
that of Down’s syndrome, diabetes, or cancer (Filipek et al., 1999). Since autism is no longer a rare disorder, physicians should be screening at the
18 month visit. Making the appropriate referral for further evaluation as
soon as possible after a child begins to exhibit signs suggestive of autism
should increase parental confidence in the child’s physician while assuring timely access to intensive behavioral therapy, genetic counseling, and support groups.
Acknowledgement
This study was supported by Health Resources and Services Administration
Award 2D54HP00022.”
