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Neuropsychological Assessment in Children and Adolescents

Margaret Semrud-Clikeman, PhD

Margaret Semrud-Clikeman, Ph.D., received her doctorate from the University of Georgia in 1990.  She completed and internship and postdoctoral fellowship at the Massachusetts General Hospital/Harvard Medical school (MGH) and received a post-doctoral neuroscience fellowship at MGH from NIH to study neuropsychological and brain morphology in children with ADHD.  Her dissertation was awarded the Outstanding Dissertation of the Year Award from the Orton Dyslexia Society.  She continues her research interests in the areas of ADHD and educational neuroscience.  She is currently working on research in ADHD, 18q- syndrome, and autistic spectrum disorders.  With Dr. Plizska at UTHSCSA, Margaret was awarded a NIH grant to study the effects of stimulant medication on neuropsychological functioning.  Dr. Semrud-Clikeman and her students have developed a social competence intervention that has been successfully piloted.  Dr. Semrud-Clikeman was awarded the 1999 Early Career Contributions award from the National Academy of Neuropsychology and was elected a fellow in that organization in 2009.  She has also been awarded support for her work studying NVLD and Asperger Disorder from a private foundation.  Moreover, Dr. Semrud-Clikeman was recently awarded intramural funding for her study of executive function and attentional problems in children who survive cerebral malaria in Malawi.  She has published more than 70 articles, 75 chapters and 6 books as well as making over 200 presentations at national and international conferences. Dr. Semrud-Clikeman is currently a professor of Pediatrics and Division Head of Pediatric Behavioral Neuroscience at the University of Minnesota Medical School.  She also has board certification from the American Academy of Child Neuropsychologists

OVERVIEW

Neuropsychological assessment is designed to provide insight into how a child:

  • solves problems,
  • can remember information both in the short and long-term,
  • uses and understands language,
  • processes information both visually and orally, and
  • is able to use cognitive ability in a flexible manner.

It is designed to provide parents, educators, and medical personnel not only with what the child knows, but how the child thinks and arrives at solutions.   It encompasses cognitive ability as well as emotional and behavioral regulation assessment.  Children can have difficulty for many different reasons and a neuropsychological evaluation provides a window into understanding what is problematic, what is a strength, and also treatment recommendations.  In addition, discussions about typical development, prognosis, and possible referrals (i.e. neurology, genetics, metabolism) are also appropriate as part of the assessment.

Description

What is a neuropsychological assessment?

A pediatric neuropsychologist is a professional with a doctorate in psychology. He/she has additional specialized training in working with children and adolescents who have difficulties.  The neuropsychologist is a licensed psychologist who has done advanced study in how learning and behavior are related to the developing brain and neural networks.  Children and adolescents are different from adults in that their brain is still developing.  For example, one would not expect the same type of skills and learning of a 6 year old as a 16 year old.  The reason for this difference is that the brain changes throughout childhood and adolescence. Basic brain areas that mature early are  ‘hard-wired.’  This means that they are genetically programmed.  These areas include visual acuity, auditory processing, and motor control. Other brain areas continue to develop throughout childhood and involve the ability to learn, remember, pay attention, and manage behavior.  Some parts of the brain (the frontal lobes) do not fully mature until the person is in his/her mid-twenties.  The frontal lobes are important for controlling impulses, learning from past mistakes and having insight into one’s own behavior and its effect on others (Semrud-Clikeman & Ellison, 2009).

Most pediatric neuropsychologists see children of all ages up through late adolescence/early adulthood.  Infants as young as a few days old can be evaluated to determine their level of progress.  The evaluation of these children is fairly short and focuses on where the child is developmentally, particularly in the areas of motor and alertness.  For example,

  • the evaluation of preschoolers focuses on language and cognitive development
  • school-age children are evaluated for academic progress, emotional control, social functioning, and attention
  • adolescents are also evaluated for academic progress, emotional and behavioral control, and social functioning

Assessments of infants and preschoolers are around 2 hours of time while those with adolescents can take longer.

For some children, the pediatric neuropsychologist may see them over time to determine progress.  Most frequently these repeated evaluations are for children who have concussions, who have genetic and neurological disorders, or whose emotional and behavioral control issues are such that the neuropsychologist wants to make sure they are being provided sufficient support.

A pediatric neuropsychological evaluation differs from a school psychological assessment in emphasis.  Most school psychologists evaluate a child’s need for special education as well as to determine what is the most appropriate educationally.  The focus is on education achievement and the skills to succeed in school.

A pediatric neuropsychological evaluation differs from a general psychological assessment.  A psychological assessment looks at how the child is functioning intellectually, academically, socially, and emotionally.  This type of assessment compares the child to other children the same age and looks for differences that will assist with psychological interventions such as psychotherapy and/or parent training.  At times children have completed a psychological assessment prior to being referred for a neuropsychological assessment.  Many of the same measures are used, but interpreted differentially based on the neuropsychologist’s view of the developing brain.

Why is a child/adolescent referred for a neuropsychological assessment?

Children are often referred for an evaluation to determine why they are experiencing difficulties.  These difficulties can be problems with learning, with behavior, or with emotional control.  They are also referred because a medical issue has been newly diagnosed.  These issues may be genetic in origin, can include concussions or brain injury, be the result of cancer or brain tumor treatment, or be related to diagnoses such as epilepsy, neurofibromatosis, or movement disorders such as Tourette syndrome.  In addition, children may be referred for evaluation if they have been exposed to alcohol during the pregnancy or ingested or breathed in lead.  Neuropsychologists also see children who have significant problems with controlling their behavior and emotions.  Diagnoses such as autism, attention deficit hyperactivity disorder (ADHD), and dyslexia are also reasons for a child to be evaluated.

Children are most often referred for a neuropsychological assessment by their pediatrician, teacher, school psychologist, or by their parent.  The most common reasons are:

1) learning problems, behavior, difficulty, social difficulty, emotional control problems;

2) a disease or a genetic problem that affects the brain; or

3) a brain injury (this may be from birth, an accident, or fetal alcohol/lead exposure).

Areas such as memory, attention, processing of visual and auditory information, motor coordination, language, and emotional functioning are evaluated.  These assessments are designed to provide useful interventions and treatments for the child.  In addition, neuropsychological assessments can also help the parent, teacher, and other professionals to understand the child and his/her behavior better and to provide needed support.

Diagnostic Standards

What types of measures are used in this assessment?

A good neuropsychological assessment tailors the evaluation to the child’s needs as well as being comprehensive.  Thus, not all children will be administered the same measures.  A detailed developmental and medical history is gathered as well as information from the main people in the child’s life (parent, teacher).  This data provides a beginning point from which the neuropsychologist can determine possible areas of difficulty for the child, what measures are most appropriate, and what possible diagnoses need to be explored.  In addition, the neuropsychologist will observe the child’s behavior toward the examiner as well as toward the measures utilized.  Areas that are evaluated include the child’s motivation, how he/she manages frustration, level of cooperation, social interaction, and behavior.

The main areas that are evaluated in a neuropsychological assessment include the following:

  • a measure of general cognitive functioning
  • attention
  • executive functions
    • planning, organization,
    • cognitive flexibility,
    • working memory (ability to keep information in mind while solving a problem)
  • learning and memory
  • language
  • visual-spatial skills
  • adaptive behavior (how a child performs independently in everyday life)
  • behavior and emotional abilities
  • social skills
  • sometimes academic ability

Types of Scores

In the next paragraphs each of these areas will be described.  It is important to understand the scores meaning that may be included in the neuropsychological report.  There is one of four types of scores reported on the test report:

  1. scaled scores
  2. standard scores
  3. T-Scores
  4. Z-scores

In some cases you may see age and grade scores. These are estimates of how the child would perform and should not be used to compare over time as they are unreliable.

The scores reported on a neuropsychological assessment are  scaled for the child’s age and in some cases gender (i.e. the child is compared with others his/her age). For example, a child aged 6 is compared to one also at age 6.  Fewer items are expected for the same score at younger ages than at older ages.

Standard scores are used for overall indices of ability as well as adaptive behavior.  Average scores range between 85 and 115 and are standardized for the child’s age.  Scores from 70 to 84 are considered low average to below average and those below 70 are considered to be impaired.  On the other end of the scale, scores from 116-129 are above average and those above 129 are considered superior.

Scaled scores are used for the individual subtests most commonly on the main cognitive measure as well as on some executive functioning scales.  Average scaled scores are between 7 and 13 with a mean of 10.  Scores below 5-7 are below average and those 4 and below are impaired.  Scaled scores 13-15 are above average and those above 15 are significantly above average.

Another type of score you will see is the T-score.  These are used with overall ability measures, developmental measures, and behavioral rating scales.  Average T-scores range between 40 and 60 with scores above 60 indicating above average ability and those below 40 as impaired.  It is important to acknowledge here that behavior rating scales use T-Scores but are interpreted differently from the cognitive measures.  On a behavior rating scale, scores above 60 may indicate problematic behavior while those below 40 mean exemplary behavior.

Sometimes percentiles are reported.  Percentiles are not as exact as the above standardized scores and cannot be subtracted or added.  What percentiles do provide is a rough estimate as to how the child compares to others his/her age.  So a child performing at the 50th percentile is performing in the average range for his age.

Domains Assessed

The following paragraphs will describe each of the domains assessed as well as providing information about the most utilized measures.

General Cognitive Ability

Measures of general cognitive ability, also known as IQ tests, evaluate the child’s ability to:

  • solve visual problems,
  • understand and use language,
  • answer questions,
  • construct block designs,
  • compare visual patterns,
  • evaluate how fast a child/adolescent can process visual information, and
  • evaluate working memory.

IQ measures provide an overall score of ability.  Most measures also provide scores as to the child’s verbal skills and visual-spatial ability.  Some provide additional scores in working memory, processing speed, and learning ability.

IQ can vary over time for children who have experienced a medical difficulty.  Typically, IQ is stable after the age of 8 in healthy children.  Children who have had concussions, traumatic brain injuries (TBI), cancer treatment, and transplants often will show lowering of overall ability.  For this reason, serial evaluations are important in order to determine the child’s functioning and continuing intervention needs.

IQ tests are developed for different ages.

The Wechsler tests are developed for 3 different ages:

  1. preschool and primary (ages 3-7)
  2. school-age (ages 6-16)
  3. adult (ages 16-89)

The Differential Abilities Scale-2 (DAS-2) has 2 forms; one for children aged 2 years 6 months to 5 and another for ages 5-17.

The Wechsler and DAS scales also have scales that can be computed that measure solely nonverbal ability.

The Kaufman Assessment Battery for Children-2 (K-ABC2) is a measure for a child that is meant to be administered with less emphasis on timing and language.  The KABC2 also provide a nonverbal scale as well as general ability scales.  These are the main measures of IQ that are used in general practice.

The Stanford-Binet Intelligence Scale 5 can be used but is weighted on language for school-age children.

The Comprehensive Test of Nonverbal Intelligence (C-TONI), the Leiter International Scale of Intelligence, and the Universal Nonverbal Test of Intelligence (UNIT) are measures that do not rely on language and are used with children whose first language is not English.

Attention

Attention is an important area for evaluation because if a child has attentional problems, he/she may struggle on all of the other measures.  Attention is often evaluated through clinical interviews with parents and teachers as well as the completion of behavior rating scales. There are many behavior rating scales that are used.  Some scales ask questions about attention as well as other aspects of behavior and emotional adjustments (Behavior Assessment System for Children-2; Child Behavior Checklist).  Others solely ask about attention (Connors-3; Vanderbilt scales; Brown ADHD scales).  Most of these measures are available for parent and teacher completion and some have self-report versions.

In addition to behavior rating scales, there are continuous performance measures.  These measures require the child to be in front of a computer and click a switch for a selected target and resist clicking to a nontarget.  Some of these include:

  • Test of Variables of Attention
  • Gordon Diagnostic System
  • Connors Continuous Performance Test
  • Visual and Auditory Continuous Performance Test

All of these provide some information about the child’s ability to pay attention to a long and boring measure.  Most of these measures have auditory and visual versions.

These tests, by themselves, cannot diagnose an attention deficit hyperactivity disorder.  Such a diagnosis requires careful interviewing and observation of the child in more than one setting.  In addition, behavior rating scales from caregivers and teachers are an important part in these diagnoses.

Executive Functions 

Executive functions are those abilities that illustrate how a person solves a problem rather than just what is solved.  Executive functions include skills such as:

  • planning and organization,
  • working memory,
  • the ability to inhibit responding,
  • flexibility in thinking

Executive functions differ depending on age with younger children showing fewer executive abilities.  By mid to late adolescence most of the skills should begin to be evident.  Adolescents who have ADHD will often show difficulty with executive functioning.  Organization and planning are areas of difficulty for many adolescents but are particularly present for those with ADHD or who have experienced a traumatic brain  injury (TBI) or treatment for cancer and/or a brain tumor.  These areas can also be difficult for children with seizure disorders.  For that reason it is important to not only evaluate these skills but to acquire information from parent and teachers.

Direct measures include the Delis-Kaplan Tests of Executive Functioning (D-KEFS), the Wisconsin Card Sorting Test, and the NEPSY-2.  These measures consist of several subtests that evaluate inhibition, organization, planning, and working memory.

A behavior rating scale that can be completed by parents and teachers is the Behavior Rating Inventory of Executive Functions (BRIEF).  This rating scale evaluates the same areas that the D-KEFS and NEPSY but from the point of view of what is observed in the child’s everyday life.  In many cases the child will be able to complete the tasks on the direct measures because he/she is in a quiet room with direct feedback being provided.  It is not uncommon for the BRIEF to illustrate difficulties in application of skills.  It is important to evaluate whether the child has the skills and can’t apply them or whether he/she doesn’t know how to complete these types of tasks.  Interventions will differ depending on the answer to this question.

Learning and Memory

Learning and memory are important aspects of a child’s life.  In this case we are not referring to academic knowledge but rather how the child learns new material and then retains it.  Memory tasks are impacted by attention so it is important to recognize that if something isn’t paid attention to, it will not be recalled.  The California Verbal Learning Test-Children’s revision, Test of Memory and Learning-3, and the Wide Range Assessment of Memory and Learning-2 for children as well as the Wechsler Memory Scale IV and others are commonly used measures.

Memory tasks are divided into auditory and visual modalities.  For the auditory tasks a child is often asked to learn a list of words and repeat what they can recall.  The list is read to the child more than one time so that it can be determined whether the child profits from repetition.  Most of these types of list learning also have a break in time of about 20 minutes.  After that time, the child is again asked to list what words he/she can recall.  In many cases, there is a recognition component where the child is asked if certain words are on a list or not.  Other types of auditory memory involve listening to a story and repeated it back, or learning a pair of words and recalling them over time.

Visual memory tasks show pictures, dot arrays, and designs and ask the child to point to the pictures previously seen, touch the dots in the same sequence, or draw designs from memory.  Visual memory tasks are not as reliant on language but are impacted by attentional problems.  They can also be negatively affected by motor difficulties.

Language

Language abilities are often evaluated in a neuropsychological assessment but are more fully evaluated by a speech and language pathologist, either privately or through the school.  Neuropsychologists may sample language abilities to screen whether there are areas of concern prior to referring to the appropriate specialist.  Language skills are divided into two major areas: receptive language and expressive language.  Receptive language develops first and is higher than expressive skills.  Receptive language is the ability of the child to understand what is being said to him/her.  Expressive language is the ability to tell or express one’s thoughts.  Within both of these types of language skills are also pragmatic language abilities.  These are abilities to understand the abstract nature of what is being said as well as the intent.

Visual-Spatial Skills/Fine Motor

Visual spatial skills often require the child to copy more complex geometric figures.  In some cases the figures are presented in a grid (Developmental Test of Visual-Motor Integration) or on cards that the child copies onto a larger piece of paper (Bender-Gestalt 16est).  One of the difficulties with these measures is the reliance on motor skills.  In order to determine whether motor is the difficulty or whether there is a problem with visual-spatial reasoning, it is important to measure fine motor skills as well as tasks that are relatively motor-free.

The Purdue Pegboard requires the child to quickly place pegs in a pegboard first with the dominant hand, then with the non-dominant hand, and then with both hands together.  Age norms are provided to determine how the child’s fine motor skills are developing.  The Judgment of Line Orientation Task requires the child to look at an array of lines and match two lines that are presented to the array.  This task does not have a motor component.  By utilizing these two types of tasks, it is possible to determine whether a motor difficulty underlies the child’s difficulty in copying or writing.  If so, a referral to an occupational therapist is appropriate.

Adaptive Behavior

Adaptive behavior skills are those that allow one to function in everyday life.  To that end, most measures are completed by the parent with some also completed by the teacher and are normed for the child’s age.  The areas assessed include:

  • communication (answering the phone, using computers, getting one’s needs met, ordering in a restaurant),
  • activities of daily living (hygiene, household tasks, understanding how to manage money and time),
  • socialization (the ability to make and keep friends, approach others, act in socially appropriate ways, and to attend social events),
  • gross and fine motor abilities (for children under the age of 6), and
  • work ability (for adolescents).

Adaptive behavior involves executive functions as well as ability.  Children and adolescents who have an intellectual disability will score poorly on these measures.  A child cannot be diagnosed with an intellectual disability solely with an IQ below 70.  Adaptive behavior must also be assessed at that level.  The Vineland Adaptive Behavior Scales-2 and the Adaptive Behavior Assessment System are examples of adaptive behavior measures. Both assessments can be completed by teacher and parents.

Behavioral and Emotional Functioning

A clinical interview of the parents and child is the most appropriate method for evaluating a child’s behavioral and emotional functioning.  Questions may include:

How is the child’s mood most of the time?

What is frustrating for the child?

How does he/she handle frustration?

What types of intervention have been attempted?

What has been successful in working with the child?

Individual interviews with the child and adolescent can also center on these areas. In some cases a child may be forthcoming, while others may be reluctant to share feelings and thoughts.  Observation of the child is an important part in evaluating the child’s emotional functioning.  For example, how he/she reacts to the examiner is as important as the tasks that he/she is asked to perform.

Social Skills

Social skills are evaluated through parent and teacher questionnaires and observations.  In addition, there are some rating scales that can provide insight into how the child relates to others.  The BASC-2 (discussed above) evaluates social skills as well as behavioral and emotional functioning.  In addition measures such as the Social Communication Questionnaire and the Social Responsiveness Scale can provide information as to the child’s day to day social functioning.

Academic Ability

Academic skills are screened during a neuropsychological evaluation.  This area of assessment is often accomplished by the school psychologist.  Insurance companies are reluctant to reimburse for academic assessment so make sure that it is inquired about at the assessment or when discussing payment.

There are many academic measures that are used.  Two examples include The Woodcock-Johnson Achievement Battery-IV and The Wechsler Individual Achievement Test-II.  These measures evaluate overall reading skills, mathematics, and written language.  Scores on these measures can be compared to that of the IQ tests.  A significant discrepancy between ability and achievement is considered a possible sign of a learning problem such as dyslexia in reading and should be further evaluated through the school.

Therapeutic Intervention

Interpretation of the Results of the Evaluation

The neuropsychologist will compare a child’s test scores to those of other children the same age.  This procedure is accomplished with all measures and a profile is developed for the child.  This profile has strengths and weaknesses for the particular profile.  It is helpful because it can point to areas where a child is succeeding and those for which he/she may need assistance.

Since school is a large part of a child’s life, the profile can assist in explaining why a child may be experiencing difficulty.  A reading problem may be due to an underlying attentional difficulty, a perceptual problem, or a learning disability in dyslexia.  It may also be related to problems with understanding language, processing information, or an emotional reason such as anxiety or depression which may make it difficult to absorb new learning.  A concussion or traumatic brain injury (TBI) can also cause difficulty with learning and with retention of new information.  Medications and medical treatments for seizure disorders (i.e. epilepsy), genetic disorders, and cancers can also cause difficulty with learning.  Many teachers and parents do not have the information necessary to understand these disorders and to develop appropriate interventions.  Knowledge of a child’s strengths can assist in developing appropriate strategies for remediation and teaching (Hale et al., 2016).

For children who have undergone treatment for cancer, brain tumors or who have been diagnosed with genetic syndromes, it is important to track progress.  In some cases a child will show a regression either due to treatment or because they have lost skills because of extensive hospitalizations.  In either case, it is important to monitor progress over time.

Children with ADHD often experience anxiety and depression.  Research has found an approximate overlap of 25 to 30% of children with ADHD who have a mood disorder.  Furthermore, children with a primary disorder of anxiety or depression can have problems with the ability to pay attention even if they do not have a primary diagnosis of ADHD.  It is part of the neuropsychological assessment to determine whether these disorders are present or whether one of these diagnoses is more appropriate.

Problems with language processing can also affect learning as well as social interaction.  Determining whether a language delay is at the root of the problem rather than solely shyness — or in the most extreme case, autism — is important.  Autistic-like behaviors or social deficits may appear to be present in children with significant language problems.  Moreover, children with autism may show language problems.  A comprehensive neuropsychological examination is key in separating out these difficulties.

The neuropsychologist is frequently a member of the medical team and information from all aspects can be combined to determine the most appropriate approach for a child.  Tests such as brain imaging, electrophysiology, and blood tests may be used in conjunction with the neuropsychological profile to determine the most appropriate course of treatment.

Most importantly neuropsychological assessment can provide a better understanding of the child and his/her functioning at home, school, and in the community.  Understanding why a child is having difficulty is the first step in providing appropriate support.  It is also important to provide as much support as possible for a child to reach his/her potential.

What is the Cost of a Neuropsychological Assessment?

The cost of a neuropsychological evaluation varies depending on the reason for the evaluation as well as the area of the country where it is performed.  Costs can range from $1,200 to $5,000 depending on the scope of the assessment.  Insurance pays for much of the assessment except in the case of determining ADHD or dyslexia.  In those cases, a school psychologist working in the school may be an appropriate professional to evaluate the child.  Some insurance companies will pay for a neuropsychological assessment regardless of the reason for the assessment.  Others will pay for a neuropsychological assessment only if there is a medical diagnosis.  Medical diagnoses can include prematurity, failure to thrive, severe neglect and abuse at early ages, as well as the usual genetic and disease processes.  In some cases, insurance companies will require a pre-authorization completed by the neuropsychologist.  A pre-authorization form asks for possible diagnoses, the history of the problem, and what has been tried.  Sometimes a pre-authorization request will be denied.  The neuropsychologist may then complete a letter documenting the medical necessity of the assessment.

Caretaker Augmentation

Are there organizations or support groups that can be helpful?

There are many organizations on line to assist parents and teachers with these children.  The following paragraphs provide information about key organizations.

Learning Disabilities

For dyslexia a key website is that of the International Dyslexia Association (http://eida.org/).  This site provides information about the disorder which includes reading and written language as well as support for teachers.  IDA also has an annual  conference that is geared toward parents and teachers and is a wealth of information.  The Learning Disabilities Association (LDA) (http://ldaamerica.org/) is a parent organization that not only provides information about different types of learning disabilities but also has links to advocates and other supportive staff.

ADHD

CHADD is an organization for children, adults, and parents of children with ADHD.  The website is helpful in finding resources and includes conversations about key difficulties seen in this disorder (http://www.chadd.org/).  CHADD has an annual conference in which training is provided for advocacy, parent behavioral management, and teacher resources.  Its website has columns that include ‘Ask the expert’, parent to parent resources, a reference bibliography and teacher to teacher forums.

There are several books that may also be helpful resources for parents:

  1. “Smart but Scattered” series of books by Peg Dawson and Richard Guare (Dawson & Guare, 2011)
  2. “Straight Talk about Psychiatric Medications for Kids, Third Edition” by Timothy E. Wilens MD (Wilens & Hammerness, 2016) “Taking Charge of ADHD” series by Dr. Russell Barkley (Barkley, 2013)
  3. “Executive Function in Education” By Lynn Meltzer (Meltzer, 2010)

Autism

Autism has many websites that can be searched.  The websites that have the strongest ties to state of the art research include Autism Speaks (autismspeaks.org) and the Autism Society (http://www.autism-society.org/).  Another helpful website is by Dr. Ami Klin (https://www.ted.com/talks/ami_klin_a_new_way_to_diagnose_autism?) and one by Fred Volkmar (https://www.youtube.com/watch?v=vkftukvl79o) among many others.

Helpful books may include the following:

  1. “The Autistic Brain” by Temple Grandin and Richard Panek. (Grandin & Panek, 2013)
  2. “Look me in the eye: My life with Aspergers”  by John Elder Robinson (Robison, 2007)
  3. “A parent’s guide to Autism” by Sally Ozonoff, Geraldine Dawson, James McPartland (Ozonoff, Dawson, & McPartland, 2014).

Tourette Syndrome

Tourette’s syndrome is an disorder that can affect social, behavioral, and learning.  A major website for this disorder is from the Tourette Association of America (http://tourette.org/Medical/whatists_cov.html).  This website provides information about the disorder as well as state of the art psychotherapy and medication treatment.  In addition an interesting video on Youtube demonstrates this disorder and the challenges it presents (https://www.youtube.com/watch?v=e8HtTb0Vk_o).

Seizure Disorders

Epilepsy affects approximately 150,000 people worldwide each year in the U.S.  Approximately 1 in 26 people will develop a seizure disorder in their lifetime. It is most common in young and older people.  Medication is generally used to control seizures but approximately 25% of the population do not respond well to the medications.  A helpful website is http://www.epilepsy.com/.

Traumatic Brain Injury/Concussion

There are approximately 200,000 traumatic brain injuries (TBI) that occur every year.  While both genders have TBI, it is more frequent in males. A website that is helpful with information about TBI as well as publications and organizations can be found at http://www.ninds.nih.gov/disorders/tbi/tbi.htm.  It also has a list of organizations that can be very helpful.

Concussions are a type of head injury that can have temporary symptoms or ones that may last longer if there is more than one concussion experienced.  Concussions often occur from sporting events but can occur in everyday life.  Both genders are susceptible to concussions with girls possibly showing more neurocognitive difficulty because of structural differences in the neck.  An excellent website that provides additional information can be found at http://www.cdc.gov/headsup/.

Rare Genetic Disorders

Genetic disorders that are not frequently found can be isolating for parents as they try to understand the medical language, the challenges and treatments for these disorders, and parents who share their experiences.  The list below is by no means exhaustive but may provide support for parents with newly diagnosed children.

  1. Mucopolysaccharidoses (MPS) and related diseases are diseases where the body is unable to produce a specific enzyme that allows for the breaking down of specific substrates. A website for parents and professionals for this disorder is found at http://mpssociety.org/mps-diseases/.
  2. Adrenoleukodystrophies are generally found in boys between the age of 4 and 10 where the brain begins to demyelinate (loss of white matter tracts in the brain). Without treatment this disease is terminal.  A website that is helpful can be found at http://www.aldfoundation.org/.
  3. Rasopathies are genetic syndromes where the proteins that assist with signal conduction in the nerves are affected. Further information can be found at https://rasopathiesnet.org/rasopathies/.
  4. Turner Syndrome affects girls and is where one of the x chromosomes is deleted. The website (http://www.turnersyndrome.org/) provides additional information.
  5. Deletion syndromes. There are many deletion syndromes.  The following are just a few:
    1. Velocardiofacial syndrome is a deletion of chromosome 22 long arm. Difficulties are frequently seen with nonverbal and visual-spatial difficulties.  http://www.vcfsfa.org.au/pages/what-is-vcfs.php
    2. 18q- syndrome is a deletion on the long arm of chromosome 18. It often results in mental retardation as well as facial and limb abnormalities.  Support can be found at http://www.chromosome18.org/18q/distal-18q/.
    3. Additional chromosome deletion support can be found at http://www.rarechromo.org/html/chromosomesanddisorders.asp.

Glossary

Neuropsychology:  The study of brain and behavior.  In children it is also the study of how development affects brain structures as well as environmental influences.

Neuropsychological Assessment:  A comprehensive evaluation of several areas of a child’s life and functioning ability.  Combines psychological assessment with an understanding of brain anatomy and development.

Hard-Wired:  Brain areas that are fully functional at birth and that do not change with experience.  Includes vision, auditory, tactile, and basic motor skills such as sucking and movement from pain (reflexes)

Frontal lobes:  The frontal part of the brain.  This area develops last and can continue developing into the late twenties.  Important for controlling impulses, insight into behavior, and is thought to be where the seat of personality lies..

Concussion:  A severe hit to the head that results sometimes in unconsciousness but most often the presenting symptoms are headaches, dizziness, light aversion, and lethargy.

Autism Spectrum Disorders:  A diagnosis usually applied in childhood where the child has difficulty interaction with others, understanding other people’s perspectives, and can develop intense interests in circumscribed areas.

Attention Deficit Hyperactivity Disorder:  Is a neurodevelopmental disorder characterized by problem with attention, impulse control, and/or hyperactivity.

Dyslexia:  A neurodevelopmental disorder that results in having significant difficulties with reading, usually with phonetic analysis but sometimes with the structure of the words.

Executive Functioning:  A neuropsychological construct that encompasses skills including planning, organization, working memory (the ability to keep information in mind while solving a problem), and cognitive flexibility.

Adaptive Behavior:  This is a measure of how a child performs in everyday life.  Includes measures of communication, socialization, daily living skills (washing, dressing, etc.) and for younger children motor ability.

Scaled Scores:  Standardized test scores that have a mean of 10 with average scores ranging from 7 to 13. Higher scores are better.

Standard Scores:  Standardized test scores that have a mean of 100 with average scores ranging from 85 to 115.  Commonly used in intelligence tests. Higher scores are better.

T-Scores:  Standardized test scores that have a mean of 50 with average scores ranging from 40 to 60.  Higher scores are better

Z-scores:  Standardized test scores that are derived from the mean of the expected score minus the obtained score divided by the standard deviation for the test.

Cognitive Ability: Also referred frequently as IQ.  Measures the child’s ability to solve problems, communicate verbally and nonverbally, understand visual problems, solve problems while keeping the steps in mind, and evaluates how quickly a child can solve a visual problem.

Wechsler IQ tests:  The gold standard of measures of cognition.  There are three tests based on age.

Attention:  An important area for assessment.  Looks at how the child processes information quickly, how he/she can sustain attention, and how he/she manages impulses.

Behavior Rating Scales:  Generally completed by a caregiver (usually a teacher and/or a parent) and provides information as to how the child functions behaviorally and emotionally in the various settings.  These ratings are compared to the child’s age.

Continuous Performance Measures:  Generally computer administered and measure the child’s attentional skills on a long, boring test.

Learning and Memory:  Skills that are complementary.  Both of these areas are significantly impacted by attention.

Receptive Language:  This is the ability to understand what is being said to one.

Expressive Language:  This is the ability to express one’s ideas and thoughts and to engage in meaningful conversation.

Visual-Spatial Skills:  The ability to construct block designs from a model and to copy figures appropriately.

Social Skills:  The ability to relate to others in an age appropriate manner.

Therapeutic Intervention/Feedback:  The providing of results from a neuropsychological assessment in such a way that the caregiver can understand what is being said and use the recommendations to assist the child.

References

Barkley R. Taking Charge of ADHD (3 ed.). New York: Guilford, 2013.

Dawson P, Guare R. Smart buT Scattered. New York: Guilford Press, 2011.

Grandin T, Panek R. The autistic brain: Thinking across the spectrum. Boston: Houghton Mifflin Harcourt, 2013.

Hale JB, Semrud-Clikeman M, Fiorello CA. School Neuropsychology. New York: Guilford Press, 2016.

Meltzer L. Promotion executive function in the classroom. New York: Guilford, 2010.

Ozonoff S, Dawson G, McPartland JC. A parent’s guide to high-functioning autism spectrum disorder: How to meet the challenges and help your child thrive. New York: Guilford, 2014.

Robison JE. Look me in the eye: My life with Asperger’s. Portland, OR: Broadway Books, 2007.

Semrud-Clikeman M, Ellison PAT. Child Neuropsychology: Assessment and Intervention. New York: Springer, 2009.

Wilens T, Hammerness PG. Straight talk about psychiatric medications for kids (4 ed.). New York: Guilford, 2016.

Family Stories

Resources

Caretaker Augmentation

Are there organizations or support groups that can be helpful?

There are many organizations on line to assist parents and teachers with these children.  The following paragraphs provide information about key organizations.

Learning Disabilities

For dyslexia a key website is that of the International Dyslexia Association (http://eida.org/).  This site provides information about the disorder which includes reading and written language as well as support for teachers.  IDA also has an annual  conference that is geared toward parents and teachers and is a wealth of information.  The Learning Disabilities Association (LDA) (http://ldaamerica.org/) is a parent organization that not only provides information about different types of learning disabilities but also has links to advocates and other supportive staff.

ADHD

CHADD is an organization for children, adults, and parents of children with ADHD.  The website is helpful in finding resources and includes conversations about key difficulties seen in this disorder (http://www.chadd.org/).  CHADD has an annual conference in which training is provided for advocacy, parent behavioral management, and teacher resources.  Its website has columns that include ‘Ask the expert’, parent to parent resources, a reference bibliography and teacher to teacher forums.

There are several books that may also be helpful resources for parents:

  1. “Smart but Scattered” series of books by Peg Dawson and Richard Guare (Dawson & Guare, 2011)
  2. “Straight Talk about Psychiatric Medications for Kids, Third Edition” by Timothy E. Wilens MD (Wilens & Hammerness, 2016) “Taking Charge of ADHD” series by Dr. Russell Barkley (Barkley, 2013)
  3. “Executive Function in Education” By Lynn Meltzer (Meltzer, 2010)

Autism

Autism has many websites that can be searched.  The websites that have the strongest ties to state of the art research include Autism Speaks (autismspeaks.org) and the Autism Society (http://www.autism-society.org/).  Another helpful website is by Dr. Ami Klin (https://www.ted.com/talks/ami_klin_a_new_way_to_diagnose_autism?) and one by Fred Volkmar (https://www.youtube.com/watch?v=vkftukvl79o) among many others.

Helpful books may include the following:

  1. “The Autistic Brain” by Temple Grandin and Richard Panek. (Grandin & Panek, 2013)
  2. “Look me in the eye: My life with Aspergers”  by John Elder Robinson (Robison, 2007)
  3. “A parent’s guide to Autism” by Sally Ozonoff, Geraldine Dawson, James McPartland (Ozonoff, Dawson, & McPartland, 2014).

Tourette Syndrome

Tourette’s syndrome is an disorder that can affect social, behavioral, and learning.  A major website for this disorder is from the Tourette Association of America (http://tourette.org/Medical/whatists_cov.html).  This website provides information about the disorder as well as state of the art psychotherapy and medication treatment.  In addition an interesting video on Youtube demonstrates this disorder and the challenges it presents (https://www.youtube.com/watch?v=e8HtTb0Vk_o).

Seizure Disorders

Epilepsy affects approximately 150,000 people worldwide each year in the U.S.  Approximately 1 in 26 people will develop a seizure disorder in their lifetime. It is most common in young and older people.  Medication is generally used to control seizures but approximately 25% of the population do not respond well to the medications.  A helpful website is http://www.epilepsy.com/.

Traumatic Brain Injury/Concussion

There are approximately 200,000 traumatic brain injuries (TBI) that occur every year.  While both genders have TBI, it is more frequent in males. A website that is helpful with information about TBI as well as publications and organizations can be found at http://www.ninds.nih.gov/disorders/tbi/tbi.htm.  It also has a list of organizations that can be very helpful.

Concussions are a type of head injury that can have temporary symptoms or ones that may last longer if there is more than one concussion experienced.  Concussions often occur from sporting events but can occur in everyday life.  Both genders are susceptible to concussions with girls possibly showing more neurocognitive difficulty because of structural differences in the neck.  An excellent website that provides additional information can be found at http://www.cdc.gov/headsup/.

Rare Genetic Disorders

Genetic disorders that are not frequently found can be isolating for parents as they try to understand the medical language, the challenges and treatments for these disorders, and parents who share their experiences.  The list below is by no means exhaustive but may provide support for parents with newly diagnosed children.

  1. Mucopolysaccharidoses (MPS) and related diseases are diseases where the body is unable to produce a specific enzyme that allows for the breaking down of specific substrates. A website for parents and professionals for this disorder is found at http://mpssociety.org/mps-diseases/.
  2. Adrenoleukodystrophies are generally found in boys between the age of 4 and 10 where the brain begins to demyelinate (loss of white matter tracts in the brain). Without treatment this disease is terminal.  A website that is helpful can be found at http://www.aldfoundation.org/.
  3. Rasopathies are genetic syndromes where the proteins that assist with signal conduction in the nerves are affected. Further information can be found at https://rasopathiesnet.org/rasopathies/.
  4. Turner Syndrome affects girls and is where one of the x chromosomes is deleted. The website (http://www.turnersyndrome.org/) provides additional information.
  5. Deletion syndromes. There are many deletion syndromes.  The following are just a few:
    1. Velocardiofacial syndrome is a deletion of chromosome 22 long arm. Difficulties are frequently seen with nonverbal and visual-spatial difficulties.  http://www.vcfsfa.org.au/pages/what-is-vcfs.php
    2. 18q- syndrome is a deletion on the long arm of chromosome 18. It often results in mental retardation as well as facial and limb abnormalities.  Support can be found at http://www.chromosome18.org/18q/distal-18q/.
    3. Additional chromosome deletion support can be found at http://www.rarechromo.org/html/chromosomesanddisorders.asp.

Glossary

Neuropsychology:  The study of brain and behavior.  In children it is also the study of how development affects brain structures as well as environmental influences.

Neuropsychological Assessment:  A comprehensive evaluation of several areas of a child’s life and functioning ability.  Combines psychological assessment with an understanding of brain anatomy and development.

Hard-Wired:  Brain areas that are fully functional at birth and that do not change with experience.  Includes vision, auditory, tactile, and basic motor skills such as sucking and movement from pain (reflexes)

Frontal lobes:  The frontal part of the brain.  This area develops last and can continue developing into the late twenties.  Important for controlling impulses, insight into behavior, and is thought to be where the seat of personality lies..

Concussion:  A severe hit to the head that results sometimes in unconsciousness but most often the presenting symptoms are headaches, dizziness, light aversion, and lethargy.

Autism Spectrum Disorders:  A diagnosis usually applied in childhood where the child has difficulty interaction with others, understanding other people’s perspectives, and can develop intense interests in circumscribed areas.

Attention Deficit Hyperactivity Disorder:  Is a neurodevelopmental disorder characterized by problem with attention, impulse control, and/or hyperactivity.

Dyslexia:  A neurodevelopmental disorder that results in having significant difficulties with reading, usually with phonetic analysis but sometimes with the structure of the words.

Executive Functioning:  A neuropsychological construct that encompasses skills including planning, organization, working memory (the ability to keep information in mind while solving a problem), and cognitive flexibility.

Adaptive Behavior:  This is a measure of how a child performs in everyday life.  Includes measures of communication, socialization, daily living skills (washing, dressing, etc.) and for younger children motor ability.

Scaled Scores:  Standardized test scores that have a mean of 10 with average scores ranging from 7 to 13. Higher scores are better.

Standard Scores:  Standardized test scores that have a mean of 100 with average scores ranging from 85 to 115.  Commonly used in intelligence tests. Higher scores are better.

T-Scores:  Standardized test scores that have a mean of 50 with average scores ranging from 40 to 60.  Higher scores are better

Z-scores:  Standardized test scores that are derived from the mean of the expected score minus the obtained score divided by the standard deviation for the test.

Cognitive Ability: Also referred frequently as IQ.  Measures the child’s ability to solve problems, communicate verbally and nonverbally, understand visual problems, solve problems while keeping the steps in mind, and evaluates how quickly a child can solve a visual problem.

Wechsler IQ tests:  The gold standard of measures of cognition.  There are three tests based on age.

Attention:  An important area for assessment.  Looks at how the child processes information quickly, how he/she can sustain attention, and how he/she manages impulses.

Behavior Rating Scales:  Generally completed by a caregiver (usually a teacher and/or a parent) and provides information as to how the child functions behaviorally and emotionally in the various settings.  These ratings are compared to the child’s age.

Continuous Performance Measures:  Generally computer administered and measure the child’s attentional skills on a long, boring test.

Learning and Memory:  Skills that are complementary.  Both of these areas are significantly impacted by attention.

Receptive Language:  This is the ability to understand what is being said to one.

Expressive Language:  This is the ability to express one’s ideas and thoughts and to engage in meaningful conversation.

Visual-Spatial Skills:  The ability to construct block designs from a model and to copy figures appropriately.

Social Skills:  The ability to relate to others in an age appropriate manner.

Therapeutic Intervention/Feedback:  The providing of results from a neuropsychological assessment in such a way that the caregiver can understand what is being said and use the recommendations to assist the child.