Presenter: Chip Kobe, PhD.

Searching data bases, Dr. Kobe found only 2 articles on the intellectual and behavioral functioning of children with MSUD. He addresses Attention Deficit Hyperactivity Disorder (ADHD) recognizing that it is secondary to the medical issue in MSUD.

The time of diagnosis and the kind of metabolic control play a part in the developmental and behavioral aspects of MSUD. When in good metabolic control, behavioral issues are probably based upon that child's personality, but when out of control the behavioral issues may be a part of metabolic control and not normal functioning. Compliance with the special diet is also involved in MSUD.

Some areas in which psychologists can be of help:

  • Developing behavioral modification approaches
  • Improving adaptive skills
  • Addressing parenting stress
  • Developing child's self confidence and self esteem

A neuro-development disorder is characterized by:

  • Deficits in sustained attention for mental tasks (academic vs. Nintendo)
  • Difficulty inhibiting behavior - impulsive, not thinking before they act
  • Problems regulating activity level - hyperactivity
  • Impairment in the ability to use rules and instructions to guide their behavior
  • Decreased ability to work toward long-term goals

Inattention, impulsivity, and hyperactivity, the core symptoms in ADHD, necessitate changes in lifestyle - parenting and educational approaches and sometimes medication. These children are prone to relapse. Behavior management takes more time, effort, patience and persistence than with other children.

Three to five percent of school age children are diagnosed with ADHD. Currently there is a 3:1 ratio of males to females but 6:1 males are being treated. Many females are being missed. ADHD is found in all countries and ethnic groups.

There are few differences in core symptoms in the genders. Females have fewer conduct problems or aggressive behaviors, more learning problems, trouble focusing their attention and more symptoms related to anxiety and depression.

There are biological, social, psychological, and developmental factors which influence how children develop and behave. There are also issues involved related to their cognitive development, memory processes, their personality, and also perceptual and motor skills.

ADHD primary symptoms:

  1. Inattention- impairment that is not typical for their age, problems with attention to detail, don't listen when spoken to, difficulty organizing tasks, easily distracted, forgetful
  2. Hyperactivity- fidgety, trouble remaining in their seat, can't play quietly, seem to be on the go, excessive talking
  3. Impulsivity- blurt out answers before questions are completed, difficulty waiting their turn, interrupt others

These affect a child's social skills. Other children pick up these symptoms first, and begin to exclude ADHD children from the group. These children are perhaps not as predictable and don't follow the same routine as the other children. We need to enhance their social skills.

May have co-existing problems:

  • Psychiatric disorders
  • Opposition or defiant behavior
  • Conduct problems
  • Depression - anxiety
  • Having a lot of physical complaints with no medical cause
  • Learning problems in school (MSUD are at risk)
  • Excessive variability in performance
  • Not as productive as expected to be
  • Lower than expected levels of achievement
  • Emotional problems
  • Issues of self-esteem
  • Low tolerance for frustration - over-react to situations
  • Peer rejection
  • Little regard for social consequences
  • Immature play and social interests
  • Don't read their social environment - misinterpret actions of others

Parents can do a functional assessment of their child. Be sure to consider the events or situations that occur prior to the behavior. It may be simply a way to get attention or there may be another function to that behavior. Don't jump to the conclusion it is related to ADHD. When does it happen? Is it an issue of metabolic control or are there other stressors?

Behavior Management of children with ADHD:

  • Give immediate feedback and consequences for their behavior.
  • Give more frequent and higher level feedback and consequences in managing their behavior.
  • Institute behavioral approaches that use more powerful consequences (star charts, etc.).
  • Encourage and praise more often.
  • Always use positives before negatives.
  • Be consistent over time and in different settings.
  • Anticipate problems to limit the tendency to over-react to the child's problem behavior.
  • Keep disability perspective in relationship to the child's behavior (avoid anger/embarrassment).
  • PRACTICE FORGIVENESS! (for child, yourself, and those who misunderstand the situation)

There are effective and scientifically proven treatments for ADHD. Medicine is now accepted along with behavior modification, but there are no studies that look at the use of medications, such as Ritalin, to treat ADHD symptoms in children with MSUD. The traditional medications used for ADHD do have the side effect of appetite suppression. A new medication may have fewer side effects but is not widely available at this time. Using antidepressants may be an alternative.

There is a support group called Children and Adults Having Attention Deficient Disorder (CHADD). Most communities have a CHADD chapter which is a good resource.

Parents need training in child management approaches. Some of the intuitive things parents do don't work with ADHD children. Teachers need training in classroom management. They need to know which children have learning disabilities and which ones just need a little extra help.

Parents may need to be an advocate for their child to access proper services in schools. Special education is important for some; a multi-faceted evaluation is important to determine qualification for special services. There may be psychologists or other services within your medical center which can help with these issues.

Unproven/Disproven Treatments:

  • Dietary management for ADHD
  • Megavitamin/Orthomolecular Therapies
  • Sensory-Integration therapy for ADHD
  • Chiropractic manipulation
  • Ocular motor exercises/optometrics
  • Traditional play therapy
  • Neuro-feedback (EEG biofeedback)
  • Self-control training in clinics
  • Social skills training in clinics

There are no easy answers. But if you can document the effect upon the child's functioning, you can make substantial changes in the child's overall behavioral functioning and learning. These core symptoms do follow a good percentage of persons into adulthood. However, adults seem to learn coping strategies and find jobs, careers, and educational interests where symptoms have a lesser effect on their daily functioning. Some adults still benefit from treatment.


The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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