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Topic of the Day

"Why is the psychologist asking for access to all these records?"

Recently there was some discussion on an Autism support listserv regarding requests for records by psychologists performing an evaluation of a child.  The discussion all started when a parent asked why a psychologist would need access to "all these records" and stated that she did not understand why the psychologist would need copies of "medical records".  I was startled to see a variety of parents and advocates arguing vigorously for the parent that raised the question not to release any records to the psychologist conducting the evaluation.  The arguments all seemed to boil down to some sort of resistance to allowing them to fall into the hands of the school system.  Many argued that the psychologist had no real need for access to medical records, therapists evaluations (OT, PT, SLP, ect.), or even previous psychological reports.  The argument that the school having "all those records" amounted to providing them with ammunition to "manipulate you in undesirable ways."  A school nurse offered that she did not need access to such records but only to a summary to let her know what they child's conditions are and how they need to be dealt with in the school and that therefore a psychologist had no need for access to original records either.  One advocate even went so far as to offer that a lawyer she frequently works with routinely councils parents never to sign releases for such records and that if they already have signed such releases to withdraw them in writing as quickly as possible.  Many parents simply asserted that they did not understand why the psychologist would need "all those records" and that the records were "none of their business!"

I'll try to answer the essential question of why the psychologist should always ask for access to "all those records" and why it really is "their business" so that parents can make a more informed decision if they are the recipient of such a request in the future.  I'll also try to make clear how the psychologist's role as an evaluator is very different from that of the local school nurse or even the teacher.  This is a very disturbing situation - more so because advocates and others weighed in with arguments that demonstrate the assumption of an adversarial relationship between the family and the school.  It has been my experience that such a situation has always led to decreases in the quality of the evaluation of the child and thereby to greater limitations on how useful the evaluation can be in helping serve the child. Hopefully a more complete understanding of the evaluation process, what goes into conducting a comprehensive and professional evaluation, and how records from various professionals fit into that process will assist parents in the future.

First, let me give a hypothetical case illustration that is not unlikely for a psychologist asked to evaluate a school-aged child.  A psychologist is asked to perform an evaluation for a school (either as the schools psychologist or as an Independent Education Evaluator) of an 8-year-old girl enrolled in public school.  She presents with aggression, self-injury, limited expressive language, poor socialization, and nearly no receptive language.  She is currently served with a AUT (Autism) eligibility and her pediatrician has labeled her "Pervasive Developmental Delay - Not Otherwise Specified" (PDD-NOS).  She is currently receiving Special Education services that include specialized language instruction designed for students with autism, Speech-Language Pathologist support weekly, Occupational Therapist intervention weekly, and adaptive physical education from the school.  She is privately receiving Hippotherapy, melatonin, a Gluten and Casein free diet, and a variety of mega-vitamin supplements.  School records indicate that she started receiving services at the end of her 3rd year of life and that previous psychological and other evaluations are consistent in identifying her as falling in the AUT eligibility category.  This would appear on the surface to be a fairly clear diagnostic picture - wouldn't it?

What many don't appear to understand is that most psychological evaluations are not written for use by other psychologists, or even other mental health professionals, but for use by parents, teachers, administrators, lawyers, and even by the student themselves.  For this reason a psychological report needs to include accurate, objective, timely, and useful information in a manner in which a reasonably well informed lay-person can access.   When an evaluation is written in jargon or does not include enough information it is then easy for any of these consumers to take the wrong information from the evaluation and make decisions based on this mis-information.  Let me give just one example: a report I read recently stated that the child was the product of a full-term normal delivery (what everyone hopes for because this presents the fewest problems in a number of ways for both the mother and child).  So, you might ask, "What is the problem?"   Well, that child was the subject of a lawsuit in which the parents were suing the obstetrician for negligence during the caesarian delivery of their 2 month pre-mature infant!  Did the psychologist even bother to ask the mother, father, or even the lawyer that referred the child to him any of this or did he simply start typing his report over an old one on his work-processor and forget to change that material?  In either case this is unacceptable performance for a "professional".  From a non-litigious perspective accuracy regarding the delivery issue is important from a futures planning perspective and an evaluation in order to better serve perspective because there are some specific learning issues that go along with premature birth.  So, quite aside from the legal issues, if this report remained in the file and the child went to school with it available to the teachers it might have undercut the appropriate evaluation of that child for learning problems.   This means that relying only on summaries or non-original materials can potentially seriously mislead the evaluator by providing false or incomplete information.

Assuming that the examiner can adequately administer and score/interpret the devices used in assessing someone, there are two main ways that a psychological evaluation can be inadequate.  In the first, the examiner can fail to review the background material and previous reports thoroughly.  In the second,  the examiner can present a battery of devices (tests) which do not address the areas of concern (either completely enough or at all).  When asked to evaluate a student the first question that should be asked is "Why?".  What is the "referral question" that the person asking for the report wants answered - essentially why did they think an evaluation by a psychologist would be helpful and what specifically are they looking for from the report.  Early in my career I worked in several medical settings with physicians.  Now physicians know a great deal about the biology of behavior and the drugs that can be used to alter behavior, thought, and emotions but they know darn little about psychological assessment and formal psychometrics because they just aren't trained in those areas.  I would routinely have physicians write orders for me to do "projectives" on a child without any rationale or "context".  Now it might be fine for a physician, who knows more about such things than the nurse, to order blood work and to specify the blood tests to be run by the nurse or technician - but this does not work for psychological tests because they need a context in which to be placed and the physician normally just doesn't possess the training to make the right selection.  Most of the time I would just talk with the physician and ask them what they were thinking and what question they wanted answered and then tell them I would do such-and-such tests and that worked out fine.  Occasionally I would run into a real "gunner" who would reiterate their "order" for "projectives" and instead of butting heads with them I would read as much about the patient as I could (in order to develop a context) and do the tests I thought appropriate.  More often than not such "gunners" would thank me for having done the "projectives" even when none were conducted or included in the report!  The right tool for the right job should be the watch words of anyone psychologically evaluating anyone under any circumstances.

Does this mean that I look over a patient, their records, and decide what tests to do for the evaluation and then just do it?  Of course not.  A good evaluation is an evolving process in which questions are asked, records reviewed, hypotheses  are formulated, tests administered, information reviewed, theories de-constructed, additional assessments done, and both confirming and disconfirming information integrated into some coherent picture of the person being evaluated.  However, there are indications in both the question and the history that point an aware evaluator to certain starting points among the vast array of testing devices available today.

An evaluator should require copies of all past evaluations (including social, emotional, learning/cognitive, psycho-motor, neurological and neuropsychological, speech/language, physical and occupational therapy, and medical) to be made available for review.  This information, the question and the history, provides the context in which the psychologist operates when designing and conducting the evaluation.  This context is the foundation upon which the selection between various devices and procedures is initially based by the psychologist.  Without a context such a process is worse than useless - it is a waste of resources (both time and money) better spent elsewhere.  An inadequate foundation renders any information gathered  meaningless - just as any series of words taken out of context are devoid of a broader meaning.  I can not tell you the number of reports I review annually that have neither a referral question nor a detailed history of the person being "evaluated".

Now, to return to our hypothetical case illustration of the 8-year-old girl referred for evaluation.  The evaluator asks for  and receives releases to access a variety of records held by various professionals and agencies in the process of developing a context in which to place the evaluation.  In reviewing these records there are notes from various professionals regarding rumors that the girl had several seizures when "very young" but that they did not reoccur and were not treated nor evaluated by a pediatric neurologist.  You also note in the records that the symptoms of "autism" and "PDD-NOS" were first noted "late in her 3rd year of life".  One hypothesis that should come to mind for a competent evaluator is Landau-Kleffner Syndrome.

Landau-Kleffner Syndrome (LKS) is a form of childhood epilepsy which results in severe behavior and language disturbances.  All children who have LKS have a history of abnormal electrical activity in the brain and about two-thirds have observable seizures.  Some research indicates that EEGs performed more than 6-9 months after the initial seizures will reveal no abnormal electrical activity.  LKS results in terrible changes in the child's pre-morbid (before the disease) behavior and overall functioning.  Onset is typically during the pre-school to early elementary period.  With LKS what you see is a loss of both receptive and expressive language and in many cases a very significant increase in aggressive behaviors. The child can literally no longer understand what their ears still hear and their ability to speak is also severely reduced.

For LKS there appears to be a developing standard for treatment - an anti-seizure medication (lamictal, depakene, etc.) and corticosteroids in combination.  With LKS, in many children, the combination of an anti-seizure medication and a course of corticosteroids in combination results in significant improvement in the language and behavior of the child.   However, despite the cause being neurological and medical treatment available, the treatment in not solely medical.

While for LKS there is a relatively effective combination of medical treatments that appear to have a good track record the addition of SLP and behavioral services are nearly always beneficial to the child.  First, let me say that in my experience working with the children (and their families), with LKS appropriate diagnosis and treatment by a Pediatric Neurologist specializing in children and rare disorders is essential. I have seen too many LKS children who were seen by a generalist neurologist who totally missed the diagnosis - and on more than one occasion had never heard of LKS. I have never seen a child with LKS recover significant portions of their language without some form of medical treatment (almost always the combination of drugs mentioned before). It is also true in my experience (and there is some support for this in the literature on LKS) that the longer the delay in seeing an appropriate pediatric neurologist and getting treatment the lower the chances of significant recovery of language and improvement in behavior for the child. However, I have also not seen a child recover their language completely (or nearly so) without focused support from a highly trained Speech-Language Pathologist.  In those children with LKS there is often a pronounced increase in aggressive behaviors.  Even with good medical intervention directed by a well informed pediatric neurologist these aggressive behaviors can continue (hopefully at lower intensity) without adequate behavior management in place. So, in the case of LKS where there appears to be a clear organic cause (seizures in the temporal lobe(s)) and some growing consensus on treatment (anti-seizure plus corticosteroids) there remains the need for non-medical treatment as well (SLP and Behavior Management).

Caveats - there is no excuse for the lack of an adequate medical evaluation by the appropriately trained specialist when children demonstrate significant changes in functioning. This paper is not intended to convey any other opinion or recommendation. If your child has severe changes in behavior (or even mild ones that seem odd or difficult to understand) see your family physician immediately. It is also my recommendation that if these changes involve language (its loss or degradation), memory, ability to relate or orient, or involuntary movements of any kind that you seek a consult and evaluation by a pediatric neurologist immediately. If the pediatric neurologist tells you that it is not serious then no harm, but if you do not go ........ Remember that, for at least LKS, delays in obtaining appropriate treatment may seriously reduce the potential recovery for many children.

Why release all those records to the psychologist?  The answer is that without them the psychologist can not conduct an evaluation that meets the highest standards and which maximizes its usefulness in serving the child.  While I can not claim to have "re-diagnosed" a huge percentage of children, I can say that if an additional evaluation has been requested it is usually because of one of two reasons, either the last evaluation is out-of-date developmentally (kids are supposed to change) or someone is unhappy or unsatisfied with the last evaluation.  In either situation the evaluator should not rely on synthesized information (someone else's interpretation of that information) where they are capable of understanding the original information for themselves.  It is the process of collecting, interpreting, and integrating seemingly disparate information that is the essence of the diagnostic process.  An accurate and comprehensive diagnosis is essential to developing the most likely to be effective treatment regimen for the child.  Therefore, "all those records" are not optional and a competent evaluator needs them in order to serve the child to the highest standards possible.  Isn't that  what we are all interested in: serving the child to the highest standard possible?

Dr. Montgomery is both a licensed psychologist and a Board Certified Behavior Analyst.  He directs the Autism Spectrum Assessment Program,  has taught assessment to undergraduate and graduate students, supervised both post-doctoral psychology candidates and those seeking board certification in behavior analysis, and reviewed psychological reports for a variety of agencies and in court.  He is available to consult to you as a reviewer of program standards, professional credentials and qualifications in the field of behavior analysis, ABA, Functional Behavioral Assessment/ Analysis, and clinical and professional psychology generally.


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