Stanford Hospital (LPCH) frequently mis-diagnoses children with Intellectual Disability

Read the story of Maria below. To make a referral to Stanford hospital ( LPCH) as County Mental Health did with Maria is simply wrong. County Mental Health actions — and lack of actions — harm children who deserve better.

Maria’s story is not unusual. The story describes how many children are routinely mis-diagnosed by Stanford hospital (LPCH). Information concerning Maria and the actual parties involved have been changed or not specified to maintain privacy.

Maria, not the child’s real name, was for real exposed in utero to multiple illegal drugs. And as is true for many children exposed in utero to drugs, Maria, now age eight, has substantial difficulties that affect her overall development. Front and center, she has substantial difficulties with with executive functioning, attention and concentration.

Maria was removed at birth from her biological parents. She lives with a foster mother who only speaks Spanish and a handful of other children. In the home, she has no daily chores and prefers to play by herself. For the last several years, Maria has received County mental health services (medications and therapy) to assist with her dificulties related to inutero drug exposure.

In the home, Spanish is the principal language spoken by the foster mother. At school, Maria’s special education classes (SDC) are in English. Maria speaks a mixture of Spaish and English. For example she know shapes (circle, rectangle) and colors in English but not Spanish; on the other hand, she knows animals and and common home items better in Spanish.

Through her public school, Maria’s cognitive abilities have been assessed in Spanish, English and also with non-verbal tests. At school, she performs best on non-verbal, visual tests of intelligence that have less cultural bias. Assessed on multiple occasions, Maria performs variously. On I.Q. tests that do not rely on lanugae she performs in the Average to Low Average range.

County mental health gave Maria a diagnosis of Pervasive Developmental Disorder, Not Otherwise Specified (PPP-NOS). Saying that they sought more ‘diagnostic clarity’, the County recently referred Maria to Lucile Packard Children’s Hospital (LPCH) located in Stanford, CA.

Though County Menal Health initiated the referral to Stanford hospital (LPCH) they did not send along their own mental health records. The Mental Health therapist or psychiatrist could have put relevant mental health summary records in an envelope and given it to the family to take with them. That did not happen.

Nor did County Mental Health assist so that relevant school psychological assessments accompanied their referral to Stanford hospital (LPCH). With a Release signed by the mother the County Mental Health therapist could have ensured that school assessments accompanied the County’s referral to Stanford hospital. That did not happen.

As a result, there was no collaboration between County Mental Health, the local schools and local physicians. As a result Stanford hospital (LPCH) lacked up-to-date relevant records available for review. Very importantly, and one wonders about arrogance by Stanford hospital, LPCH routinely does not seek out additional information other than what it gets from their own assessment.

The family had to travel two to two and a half hours each way to go to Stanford hospital (LPCH). Although there are numerous licensed psychologists trained in assessment and diagnosis the County routinely chooses to refer outside the County to LCPH. If they wanted to, County Mental Health could reaadily refer to the local Psychological Association. Every County in CA has a psychological association.

Maria was recently assessed by Lucile Packard Children’s Hospital (LPCH). Of importance, the LPCH assessment did not request nor review Maria’s multiple prior school assessments. And LPCH did not review Maria’s medical records nor her mental health records.

LPCH limited the assessment of Maria’s current functional abilities to the ratings that they obtained that day from Maria’s foster mother. No ratings were obtained from Maria’s teachers. Based on a one day assessment, done in English using a Wechsler IQ test known to have strong cultural biases, LPCH gave Maria diagnosis of Intellectual Disability/ Mental Retardation.

Yes this 9 year old child suffers from dificulties related to in utero drug exposure. And she has not yet stabilized her language abilities because she hears only Spanish at home and English at school. And yes on certain tests of executive functioning, attention and concentration she scores quite low.

Maria and other children referred by County mental halth deserve an accurate diagnosis based on a thorough review of relevant school, medical and mental health records. County mental health should collaborate with local psychological associations and use locally trained psychologists who can visit schools and observe children in their home enviornment. When referring outside the County, County Mental Healh should see that relevant school, medical and mental health records accompany their referral.

As I wrote above, to make a referral to Stanford hospital ( LPCH) as County Mental Health did with Maria is simply wrong. County Mental Health’s actions and lack of actions harm children who disserve better.

With an erroneous diagnosis in hand, County Mental Health will close Maria’s case saying that her supposed diagnosis of intellectual disability makes it impossible for her to profit from therapy. And with this diagnosis the schools probably will refer the family to social security.

What Maria truly needs is: 1) time to develop and stabilize her language abilities; 2) training in how to use schedules and other techniques that assist persons with problems with attention and concentration. Just because this eight year old tends to skip from step 1 to 4 does not mean she cannot learn to do tasks correctly. With correct interventions, Maria will be happier and society will not have to support her as an adult.

Commnets welcome. Send to: DrCameronJackson@gmail.com

Is the applicant substantially handicapped in several areas? To determine substantial handicap there are various rating scales that can assist. Gathering rating information from both the family and also another source (such as a teacher or social worker) is typically done. The Adaptive Behavior Assessment System (ABAS) is one quite good rating scale that may be used.

Why “buy” a diagnosis of autism? Because there are lots of expensive “goodies” that attach with a diagnosis of autism. Expensive school services such as Occupatonal Therapy (OT) and Speech therapy and Social Skills therapy.

In contrast to Mental Retardation — not a diagnosis that parents seek — more and more parents do try to buy a diagnosis of autism.

Is there a real explosion of autism? Appears to be. Are the numbers way up in part because of the push by many parents to BUY a diagnosis. Yes, I think so.

To date, I have seen no research that addresses this issue: many parents WANT a diagnosis of autism and DESIRE affects t how they retrospectively describe their child’s behavior.

written by Cameron Jackson, Ph.D., J.D. Licensed Psychologist PSY 14762
831 688-6002