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rev. 07/15/2008
Note: This page is a mixture of defensible evidence-based content and
personal opinion. Use at your own risk. Be the
Best You can Be is a weblog that is relevant to this topic. I wrote most of this in
around 2002 or so, I'd change a good bit of it based on my ongoing experience and reading.
Atttention-Deficit Hyperactivity Disorder (Disability) is a poorly
characterized collection of persistent behaviors or traits that are maladaptive in
a unavoidable setting. They may be adaptive in other settings. Restlessness and a
need for novelty may be maladaptive in a grade school classroom, but they might be quite
adaptive for a physics professor, entrepreneur, or traveling salesman. In the most severe
forms of ADHD, however, there may be no modern setting in which the collection of traits
are adaptive. This is particularly true when ADHD is associated with cognitive
disabilities.
ADHD traits or behaviors have likely been a part of human minds for
hundreds of thousands of years. The disability, however, is now far more
common. Our environment has changed. There are far fewer "ecological niches"
where a person, especially a child, with ADHD will thrive.
ADHD and related conditions are lifelong traits, but they are not necessarily lifelong
disabilities. The brain changes dramatically during childhood and adolescence. An
individuals environment also changes dramatically. Individuals learn. Learning, brain
development and environmental change may change ADHD from a disorder to a trait, from a
disability to a feature ... even an advantageous feature.
There is a formal definition of ADHD, but it is not terribly useful. ADHD, like
schizophrenia, is a label attached to a set of observed behaviors that probably arise from
a diverse set of interactions between genes (85%) and intrauterine environment (15%) (with
probably few postnatal contributions). We do not yet understand what genes are involved,
what proteins are involved, and what are the interactions between proteins, neurons, and
other neurologic subsystems. We may know much more in two years, we may know much more in
100 years. In the absence of deeper understanding our diagnosis and management must be
empiric, though we may be helped by theories of the underlying disorder. We try things and
see how they work.
In this web page I use an extremely broad definition of ADHD. I use the term ADHD
because it's the only "hook" we have to organize this discussion, and because I
don't know a better term to use. CDD (complex developmental disorder)
might be a better term for the range of conditions that share common characteristics. Oppositional Defiant
Disorder (ODD) overlaps very strongly with ADHD (almost all children with ODD have a
history of ADHD), it's unclear whether this involves other problems or whether it reflects
a poor outcome of severe ADHD.
- Deficits in working memory
This may be a fundamental characteristic. It appears to be a lifelong disability, though
many ADHD adults develop effective workarounds.
- Executive function immaturity and defects
Limited cognitive flexibility, difficulty planning, management of impulses
- Difficulty with social interactions and social networks.
Both autistic and ADHD children have significant difficulties building friendships and
social networks. Autistic children may not perceive this is a problem, but children with
ADHD are often very lonely. It is one of the more painful consequences of the disorder.
- Anxiety disorder
Many children with ADHD-X have a coexisting general anxiety disorder (not phobia). It's
unclear whether these are independent but correlated genetic issues, or whether they share
a common mechanism with some of the ADHD disorders.
- Propensity to substance abuse, particularly in adolescence
Additionally, Ben Polis feels that ADHD adolescents have atypically bad reactions to
marijuana use.
- Learning and cognitive disorders
ADHD children appear to have fundamental problems with working memory. This alone will
produce learning disorders. In addition, however, many ADHD children also have other
learning disorders and problems with general cognition. These appear may reflect a global
"insult" (widely acting gene defect, intrauterine injury) or economically-driven
coinheritance (severe ADHD is a profound disability that will lead to poverty, cognitive
disorders also lead to poverty, people tend to mate and marry within their socioeconomic
environment).
- Impulsivity and aggression
It does not appear that ADHD children have an innate disorder of aggression. However they
have very poor impulse control; they may act with stunning speed on an aggressive impulse
most children would suppress. A history of failure, especially social failure, and an
associated anxiety disorder may, however, also contribute to increased aggression. There
is some resemblance between aggression in ADHD children and "fear biting" in
canines. Biting, hitting, and weapon use (stones, clubs) are the biggest challenges to
ADHD management in home and school.
- Blunted or paradoxical responses to negative reinforcers
In sharp contrast to the average child, ADHD-X children may have very limited or
paradoxical responses to negative reinforces such as "time out" or loss of
privileges. They have a more typical response to "positive reinforcers" such as
sticker chart rewards, well-timed praise and other positive reinforcers. This makes
altering behavior even more challening; it's like rowing a boat with one oar.
Goals
- mitigate social isolation
- improve school performance: particularly reading and math skills
- reduce family stress (parents, siblings, proband)
- reduce probability of conduct disorder development esp. in adolescence (unclear if
environmental interventions help, but this is at least plausible)
Medication
In the midst of vast gulf of ignorance about use of medications in ADHD/CDD, one must
be guided by conservatism, humility, close observation, and trial-of-one empiricism.
- stimulants and SSRIs are used to treat social anxiety and impulsivity and to enhance
concentration. Medication selection is a trade-off between side-effects, duration of
action, symptoms, secondary conditions, cost, dose frequency, etc. It is often an empiric
process requiring periodic revisions. There is precious little data about longterm
effects. In early 2004 there's been increasing concern about risks of SSRI use in
depressed children. There is little data to guide use of SSRIs in depressed children,
there is almost no data to guide their use in children with ADHD/CDD/Anxiety disorder. The
required studies are incredibly costly, there's little inecentive to spend the time and
money to begin to collect useful data. Even with our limited data, concerns seem to fall
into 3 domains:
- limited evidence of efficacy in depressed children (though no treatment of any kind
seems to be very efficacious)
- an unknown percentage (10-25%?) of adults on these medications develop a pathologic
anxiety/restlessness/irritabilty/dysphoria syndrome associated with an increased risk of
suicide.
- there is concern, though I know of no data, that these medications blunt
"guilt" and "shame" feelings that moderate most people's behavior.
This may be inseperable from their therapeutic action.
- Stimulant therapy has traditionally been administered on a regular basis. Without any
good data, I agree with Ben Polis that we ought to consider more "as needed" use
of these medications. The dataset for longterm effects, efficacy, risk/benefit ratio for
these medications is very poor. There is some longer term data on short term risks and
benefits.
Behavioral
- experienced psychologists and social workers typically want a child to be on medication
prior to initiating behavioral therapy. They have found that behavioral interventions are
significantly more likely to succeed after medications have started. Children with high
native intelligence, strong social environments, and mild to moderate ADHD may do well
without medication, but they may also do well with fairly limited behavioral therapy.
- Cognitive therapies work quite well in children with a reasonably high native
intelligence. Children with cognitive problems have less success with cognitive therapy.
- Nothing works for everyone, and for some children nothing works even when everyone does
their very best. Interventions are empirical -- if it's not working, try something else.
Have some patience -- things may seem not to work, then abruptly they work. Then they stop
working -- or not. If it doesn't work now, it might work later. Parents need training, but
many parents will soon know more about their child than most therapists and psychologists.
Therapists must be interviewed and assessed as a potential teacher and partner -- and the
best therapists will also be potential students of the parent. The most effective
therapists have many years of professional and/or personal experience.
- The computer is an ADHD child's friend. Many ADHD children and adults seem to do well
with computers. They can adjust the computer to their fluctuating abilities, without the
complexity of associated social interactions.
- General strategies include
- Routines: Most children with ADHD, despite a definite need for stimulation, need and
love routines. They want their stimulation in predictable and regular fashions.
- Adaptive structure: provide structure and "rules" within the child's current
needs and abilities. Many ADHD children's ability to manage structure and rules may vary
greatly from week to week. Greene's book is the best guide to this approach.
- Social training: there is less experience with social training for ADHD children than
autistic children.
- Controlled environments and focal training: These are two complementary approaches.
Focal training (such as self-relaxation techniques, self-removal when stress builds, etc)
tries to build skills in isolation, controlled environments are quasi-natural settings in
which children can practice integrated skills. The goal over time is to move to supervised
activity in "natural environments". It is challenging to "end with
success".
- Adaptation of techniques developed for children with Autism.
Books
Web Sites and Organizations
ADD and CDD
Autism/PDD Sites
The Pervasive Developmental Disorder label can be applied to children with complex
developmental disorders, even though they may not meet all the criteria for a diagnosis of
autism/PDD. In addition the resources and focus applied to austism over the past several
years has produced a range of techniques that may be applicable to many
"difficult" children.
Other
- Be the Best You can Be: Blog on special
education, particularly for children with complex developmental disorders
Author: John G. Faughnan.
The views and opinions expressed in this page are strictly those of the page author. Pages
are updated on an irregular schedule; suggestions/fixes are welcome but they may take
weeks to years to be incorporated. Anyone may freely link to anything on
this site and print any page; no permission is needed for citing, linking, printing,
or distributing printed copies.