redefining adhd for the rest of us - chadd · multimodal therapy is no longer the standard of care...
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Sources
AACAP Practice Parameter for the assessment and
treatment of Children and Adolescents with ADHD.
(2007) may be accessed at
www.aacap.org/galleries/PracticeParameters/
JAACAP_ADHD_2007.pdf
European consensus statement on diagnosis and
treatment of adult ADHD: The European Network Adult
ADHD. Kooij et al. BMC Psychiatry 2010, 10:67 may be
accessed at http://www.biomedcentral.com/1471-
244X/10/67
The DSM-5 and ICD-10 Diagnostic Criteria
The diagnostic criteria have never been validated for older adolescents, adults, or the elderly.
This was to have been corrected in the DSM 5 but was completely ignored.
Initially the childhood (ages 6 to 12) criteria continued to be used for adults to “establish continuity” between the childhood condition and adults.
This failed because it requires an adult to be functioning on the level of an untreated elementary school-aged child in order to meet diagnostic criteria.
This puts in doubt all of the research done on adults with ADHD.
The Criteria Are Made for Researchers –
Not for Patients or Clinicians
The criteria must be observational – things that can be seen and counted by someone.
What goes on inside the person has been intentionally ignored by researchers because it does not lend itself to easy research.
It isn’t always there, it can’t be seen, it is often hidden by the person, and it can’t be measured.
Etiology-free. Things that look the same are the same.
No interest in why things happen as they do in people with ADHD.
Research is different
from clinical practice
Double blinded
Treatment chosen in advance
Tests one variable in homogenous group
Measure what can be seen and counted
Grouped / aggregated data erase individuality.
Statistical significance
Only active treatments
Multiple agents tried until optimal benefit
Complex, comorbid patients
Emotions and modes of thinking included.
Unique individuals
Robust clinical significance
Research Studies Clinical Practice
Why does this matter?
It determines what gets researched and who is studied.
It determines who gets the diagnosis and who does not.
It determines who gets treatment and insurance coverage.
It determines who gets accommodations at school and work.
It determines what your clinician is taught and how well they will understand you.
Problem #2
The current way of thinking about
and diagnosing ADHD has not
produced therapies that work and
provide lasting benefits.
Multimodal Therapy is No Longer
the Standard of Care
1 JAACAP Practice Parameter for the assessment and treatment of Children and Adolescents with ADHD. (2007)
Recommendation 10: “If a patient has a robust response to psychopharmacological treatment,…then psychopharmacological treatment alone is satisfactory.” 1 (page 912)
82 studies in a row have failed to show that psychosocial interventions have “any detectable, lasting benefits.” (page 903)
Provide “non-specific benefits” that are situation bound.
No one is happy about this.
Medication management + Behavioral Treatment
Multimodal Treatment of ADHD (MTA)
Optimized Medication Management alone
All treatments in the MTA led to some improvement in core ADHD symptoms
MTA Cooperative Study Group. Arch Gen Psychiatry 1999;56:1073.
Equal in effectiveness and superior to both:
Community-based treatment
“Maximum dose” Behavioral
Treatment alone
NYU-McGill Study
Long-term (2 yrs) psycho-social intervention
Long-term O.D.D. prevention interventions
Academic remediation and tutoring
Organizational skills training
Social skills training
“Attention control training”
Parental practices training
Klein RG, Abikoff H, Hechtman L, et.al., JAACAP 43:7. 792-838
In medication responsive children there was “no support for or advantage from adding:”
Why is nothing working?
This answer requires that we start
over again from the beginning with
no preconceived ideas of what to
look for or what we will find.
Start by asking the real experts –
our patients and their families.
#1 Get rid of that terrible, tongue-twisting
name!
No one identifies with…..
Attention Deficit Hyperactivity Disorder
It could not be more wrong or misleading.
“Disorder”
The notion of the Gift of ADHD can be a very emotional topic for people whose lives are highly impaired.
Nonetheless, ADHD usually conveys a number of very positive features:
Higher than average intelligence.
Much higher creativity.
World-class, out-of-the-box problem solving.
“Relentless determination.”
High energy level.
“Hyperfocus”
IQ and ADHD
70
80
90
100
110
120
130
140
150
0 10 20 30 40 50
Fu
ll S
cale
IQ
Age at Initial Diagnosis
Age at Initial Diagnosis vs Full Scale IQ
IQ can compensate for the impairments of ADHD
Can forestall diagnosis of ADHD
Horrigan J, et al. Presented at: 47th Annual AACAP Meeting; October 24-29, 2000; New York, NY.
“Hyperactivity”
Hyperactivity once defined the condition. It was
the only thing no one could miss and everyone
could agree upon.
Naturally diminishes in early adolescence which
led wishful thinkers to assert that ADHD went
away with age.
Hyperactivity was dropped as a necessary
criteria for diagnosis in 1994.
“Hyperactivity”
Instead, 2 things happen with hyperactivity:
1. It becomes internalized and the person is
internally hyperaroused. (Can’t relax,
multiple simultaneous thoughts, can’t wait,
rarely calm.)
2. It shifts to the night time and manifests as
initiation insomnia and difficulty waking up
in the morning.
Attention “Deficit”
Attention is rarely deficit; it is excessive.
Unless in a hyperfocus, people with an ADHD style nervous system are constantly juggling many thoughts at once.
The task is to give any one thing sustained and undivided engagement.
This is distracting all by itself.
Multiple, simultaneous, unrelated thoughts get better with stimulant medication but remain a significant source of distraction.
Attention “Deficit”
The most important feature is that attention is not
deficit, it is inconsistent.
3 or 4 times every day people with ADHD will “get
in the Zone” or “get in the Flow.”
This inconsistency of being able to function at a
very high level sometimes but not others appears to
be willful or defiant to others.
People with ADHD are inconsistent but in a very
consistent way.
It is vital to ask the right questions
“Look back over your entire life; if you have
been able to get engaged and stay engaged with
literally any task of your life, have you ever
found something you couldn’t do?”
A person with ADHD will answer, “No. If I can get
started and stay in the flow, I can do anything.”
Omnipotential
Functional/Experiential
Definition of ADHD
ADHD is a:
Genetic, neurological / brain-based… Difficulty with engagement As the situation demands… In which not just 1) performance, but also 2) mood, and 3) energy level… Are solely determined by the momentary sense
of… Interest, (Fascination) Challenge or competitiveness, Novelty (Creativity), or (sometimes) Urgency (Usually a deadline).
Genetic and Neurological
ADHD is biological and brain based.
Runs in families. Up to 50% of 1st degree relatives.
At least one parent will have ADHD.
It is not a factor of poor parenting.
It does not go away with age. People outgrow the childhood criteria, not the disorder itself.
The disorder will be much the same regardless of age, gender, socio-economic status, or race.
It can not be treated with behavioral techniques any more than you can lower a fever with behavioral techniques.
Difficulty with Engagement on Demand
If a person with ADHD can engage and stay engaged,
they can do almost anything.
The inconsistency is mystifying and frustrating to
everyone. If you’ve done it before, the inability to do
it now is seen as willful and defiant.
Jobs, schools, and relationships demand that we be
able to stand and deliver consistently and on
demand…not when we “feel like it.”
On the positive side, just about every person with
ADHD has had extended periods when they see how
capable they are when “in the Zone / in the Flow.”
Performance, Mood, and Energy
Performance is usually the only aspect that most people look for.
Boredom and lack of engagement is almost physically painful to people with an ADHD nervous system.
When bored, ADHDers are irritable, negativistic, tense, argumentative, and have no energy to do anything.
ADHDers will do almost anything to relieve this dysphoria. Self-medication. Stimulus seeking. “Pick a fight.”
When engaged, ADHDers are instantly energetic, positive, and social.
This shifting of mood and energy is often misinterpreted as Bipolar Disorder.
Momentary
ADHDers are inconsistent in a very consistent
fashion.
They have poor self-confidence and self-worth
because they can never know if or when their
abilities will be available when needed.
The question of “Who am I and what am I
worth?” is hard to answer without consistency.
Interest, Challenge, Novelty, and Urgency
(and perhaps Passion)
These are very personal and subjective
features. Life requires that we engage the
most important activities as the situation
demands.
Things that are interesting today may not be
interesting next week.
A person with an interest-based nervous
system must be personally interested,
challenged, find it novel, or urgent right now
or nothing happens.
ICNUP - cont.
Things that were challenging today are not once the challenge is met and mastered.
Newness is time-limited. Everything becomes old hat after a while.
Urgency substitutes for importance. The person with ADHD cannot get engaged with a task (procrastinates) merely because it is important.
Sometimes the person creates crises and chaos because they have found that it helps them get engaged and get things done. This can be mistaken for Borderline Character Disorder.
“Passion” is being investigated at the Cleveland Clinic. What does the person care about enough that it gives meaning to their life? What things is the person eager to get up every day and go do?
ICNUP – cont.
All schools are based on 2nd hand importance … what does someone else (the teacher) think is important enough to teach and put on the test because it is going to be important to know it 10 years from now?
90% of jobs are 2nd hand importance as well. What does someone else (the Boss) think is important enough to them that they are willing to pay someone to do it for them?
Once again, people who have an ADHD style nervous system don’t fit.
Contrasted to Importance-Based
Nervous Systems
Tasks don’t have to be important to the individual; Can be important to boss, teacher, spouse, parent, etc.
Tasks don’t have to be important right now.
Can prioritize, that is, arrange things in order of importance.
It is the importance of the task that helps the individual…
1) Engage on demand
2) Get access to intellect and abilities
3) Stay engaged all the way to the payoff.
An Interest-Based Nervous System is One of
Two Things That Defines ADHD
One of the few times in life we can say Always
and Never.
A person with an ADHD style nervous system
has ALWAYS been able to do anything they want
IF they can get engaged through ICNUP and
they have NEVER been able to make use of the
3 things that organize and motivate the other
90% of people in their lives.
ADHD is Not a Deficit of:
Effort
Character
Willpower
Brain activity
Brain size
Brain integrity
Structure
Parenting skills
Intelligence
Self-control
Neurotransmitters
Executive function
Deficit models have not produced therapies that
have shown lasting benefits
Jadad AR, Boyle M, Cunningham C, Kim M, Schachar R. (1999),. Evid Rep Technological Assessment Summary. November : i-viii, 1-341.
A Second Type of Nervous System
People with an ADHD style nervous system are:
Always able to do anything if…
The person can get in the Zone through…
Interest, challenge, novelty, or urgency
And sometimes passion.
But never able to even start a task based on importance, rewards, or consequences.
Implications
Decision making can be almost impossible.
If importance/priority do not organize and
motivate and…
If what you get out of any particular choice
(rewards) mean very little…
All choices look the same.
Implications
Planning and organization are very difficult.
Most planning systems are built for neurotypicals who can use Importance and time; Two things which the ADHD nervous system does not do well.
People with ADHD work backwards from the end to the beginning.
“He threw himself out the door, threw himself on his horse, and rode off in all directions.”
Why did all 82 previous approaches fail
to demonstrate lasting benefits?
The not so unspoken assumption of all 82
approaches was that the ADHD nervous system
was damaged, defective, and disordered.
The goal of all of these therapies was to change
the person from being interest-based and ADHD
into someone who was importance-based and
Neurotypical.
All that these studies did was to prove beyond
the shadow of doubt that changing the ADHD
nervous system is completely impossible.
This not only gives 1) diagnostic certainty, 2) it tells us why every-thing has failed thus far and 3) what might work instead.
We now talk in terms of managing
ADHD rather than treating it
Management has two pieces:
1. Level the neurological playing
field with medication.
2. Help the person write their
personal owner’s manual for
their ADHD nervous system.
You need to have both pieces
The person with an ADHD system gets engaged through being interested, challenged, finding the task novel or urgent, or caring passionately
AND THEN…
The medications then keep them from being distracted.
The ADHD Owner’s Manual
Highly personal and individual.
Changes over time.
Focuses on how and when the ADHD person does well.
It does not demand that they do things in a way that is neurologically very difficult and then blame them for failure.
Owner’s Manual Examples
Implementer-finisher partner.
Body doubling.
“You can’t do that!”
Planning for dead lines.
Injecting interest.
Trading interesting for importance.
Loathing.
Seeing visions.
Two Type of Emotional Problems
#1 Intense, passionate emotions that are
normal in every way except their
intensity.
#2 Intense vulnerability to rejection and
criticism that is unique to people who
have ADHD.
What is a Mood Disorder?
It is a disorder of the level or intensity of
moods (not the quality of mood)….
That have taken on a life of their own….
Separate from the events of the person’s life
and….
Outside of their conscious will and control.
Lasts without interruption for more than 2
weeks.
Moods in ADHD
People with an ADHD nervous system lead
intense, passionate emotional lives.
Their highs are higher and their lows are lower.
They moods are almost always triggered by events
and perceptions.
Their moods match their perception of the trigger.
The shift happens instantaneously.
“Get over” it quickly.
In other words, these are normal moods
in every way except their intensity.
Clinicians are trained to recognize Mood
Disorders but not ADHD
Most people with ADHD are first misdiagnosed
with Major Depression or Bipolar Mood
Disorder.
On average an adult will see 2.3 clinicians and
go through 6.6 antidepressant trials before the
diagnosis of ADHD is made.
The irony is that about 20% will have both
Depression and ADHD; about 7% of people
with ADHD will also have Bipolar.
How Big of a Problem is This?
The NCSR found that 4.3% of adults met full childhood ADHD criteria. If the requirement for documented impairment in childhood was dropped. 8.3% met diagnostic criteria
54% had sought mental health consultation in the previous 12 months.
Only 5% were diagnosed and treated for ADHD. The other 95% were usually diagnosed as having a mood disorder or personality disorder.
A 95% failure rate!
Time getting to know the person is not
reimbursed by managed care.
Be prepared to pay out of network to get a good
initial assessment with an expert.
In modern managed care medicine the
patient gets to make the diagnosis
Sources of Diagnostic Confusion
Dyslexithymia: Literally Greek for “The
wrong words for feelings.”
“Doc, I’m so Depressed!”
“I give up! I am so frustrated! I’ve worked
so hard and tried so hard and nothing works
for me the way it does for other people!”
Really demoralization and low self-esteem.
The Wrong Words for Feelings – cont.
“Doc, I’m so Anxious!” Does the patient
have “a baseless, anticipatory fear?”
“I can’t stay still for long. I can’t watch
a movie with the family. I’m impatient.
Most of all, I lie awake at night for hours
thinking about my worries and
concerns.”
Really the hyper-arousal from ADHD.
Shame: The Master Emotion
Knowing that you are “different” is rarely experienced as a good thing.
Children with ADHD are viewed as broken, “less than,” “weird,” or damaged.
They are the last picked, first picked on.
Children make no distinction between what you do and who you are.
Harsh internal dialogues become ingrained because they are used to get things done. Do more damage than good.
Self-Esteem?
Children see through false praise intended to
build up poor self-worth at an early age.
Children do not like “Everybody gets a
trophy.”
Self-esteem and self-worth have to be built on
something real….. Self-efficacy.
If you want someone to have self-esteem,
teach them how to do things and be successful
with their ADHD nervous system.
In the meantime, a cheerleader is an
absolute necessity.
It can be anyone. Parent, older sib, grand
parent, teacher, coach….
Act as the “vessel” that holds the memory of
the person as a good, likeable, capable person
especially when things go wrong.
It must be sincere. Children detect falseness.
The worst part of being ashamed is being alone
with it.
The 3 Part Cheerleader Message
1) “I know you. If anyone could have
overcome these problems through ability
and hard work, it would have been you.
2) There is something we haven’t figured out
yet that is getting in your way.
3) I will stick with you until we have figured
out what’s getting in your way and
mastered it.”
Rejection Sensitive Dysphoria
“For your entire life have you always been
much more sensitive than other people you
know to…
1. Rejection
2. Teasing
3. Criticism, or
4. Your own perception that you have
failed or fallen short?”
Features of RSD
Acknowledged by 98-99% of adolescents
and adults with ADHD. For 30% RSD is
the most impairing aspect of their ADHD.
Triggered by a perception or possibility…
That someone has withdrawn their love,
approval or respect.
Or that they have done this to themselves
when they do not meet their own high
standards for performance.
Emotional Wounds
Primitive. People can not find words to
describe the nature of the pain, just the
intensity.
Commonly experienced as a physical pain in
the chest.
Dysphoria is Greek for “unbearable.”
Usually hidden due to shame over their lack of
self-control and vulnerability.
All too often the perception of
criticism is real
The average child with an ADHD nervous
system will hear more than 20,000
additional critical or corrective messages
by 12 years of age. (Jellinek)
RSD is Genetic
Neurologically Hardwired Anything can be made worse by psychologically traumatic experiences. But …
• Almost everyone with ADHD has RSD to some degree and
• RSD does not respond well to psychotherapy because it is overwhelming and without warning but…
• It can be almost entirely removed in some people with medication…
RSD is probably a fundamental feature of ADHD.
1. It looks like an instantaneous, triggered
Major Depression complete with suicidal
impulses.
2. Earns the person the reputation of being “a
head case who has to be talked in from the
ledge on a regular basis.”
If this catastrophic emotional reaction
is internalized….
It is expressed as a flash rage at the person or
situation that wounded them so severely.
50% of people court mandated to anger
management training for domestic violence or
road rage had previously unrecognized
ADHD.
If this catastrophic emotional reaction
is externalized….
They become people pleasers: • Constantly scanning everyone they meet to
determine what that person would admire and praise.
• And that is the front that they present to the world.
• So much that they often forget what they independently want from their life.
Common ways people try to manage
the vulnerability of RSD
Or They Stop Trying Altogether
They must be assured in advance of success that is…
• Quick
• Complete
• Easy
Or they do not start at all.
The risk of trying but possibly failing in front of
people is so painful that they never try anything at all.
These are the “Slackers” of great ability who do
nothing and are seen as “lazy” rather than RSD.
What medications help?
Alpha 2 Agonists
Guanfacine (Intuniv)
Clonidine (Kapvay or Catapres)
Originally failed blood pressure medications (1983)
Only 1/3 of people get benefits for RSD. “At peace.” “Emotional armor.” “One thought at a time.”
Side effects: mild sedation, dry mouth, dizziness when standing up suddenly.
Benefits take 5 days to develop so the dose is increased every 5th day.
Monoamine Oxidase Inhibitors
(MAOI – Parnate)
Remember that RSD is a symptom or feature of
ADHD, not a recognized diagnosis.
Therefore, use of MAOI’s is not approved by the
FDA except for depression and anxiety. “Off-
label”
Requires a diet that eliminates foods that are aged
and not cooked…aged cheese, soy sauce, some
beer and wine, high end cured meat.
MAOI Medication Restrictions
Requires the avoidance of many medications
that can cause very high blood pressure
Stimulant meds for ADHD
OTC cold med with decongestant
Parnate – Serotonin Syndrome
SSRI’s (fluoxetine, citalopram, etc.)
SNRI’s (duloxetine,venlafaxine)
Imipramine and clomipramine (other TCA’s are safe)
Analgesics: Tramadol and Demerol.
OTC cough suppressants containing decongestants or dextromethorphan.
Must allow a minimum 2 week washout after stopping MAOI before using serotoninergic medications.
Hyper-Arousal
In the early days of ADHD research
Hyperactivity or Hyperkinesis alone defined
the syndrome.
It was visible and could be counted by
researchers.
No one could miss these obnoxious and
disruptive little boys.
Everyone could agree that this overt hyper-
activity was a major impairment.
Problems with Hyperactivity
It tended to miss females with ADHD.
It led to over-dosage of boys to the point of the
Zombie Syndrome. They were not disruptive but
they were also not learning anything.
When hyperactivity naturally dims down after
puberty wishful-thinking people assumed that
“People grew out of ADHD.”
Some level of overt hyperactivity is still required
by most people to consider the diagnosis of ADHD.
(ICD-10 still requires overt hyperactivity.)
But Hyperactivity Does Not Go Away
It becomes multiple simultaneous thoughts.
It becomes a constant internal sense of restlessness.
It becomes an inability to slow down or relax.
It becomes an inability to be physically and mentally “peaceful.” The ADHD brain ia always doing something.
It shifts to the night becomes sleep disturbances.
Sleep Deprivation
Most adolescents and adults lose 2 hours or more each night because they cannot “turn off my brain and body.”
¼ of adults with ADHD list their insomnia as the most impairing aspect of their ADHD.
Sleep deprivation makes everything worse…
ADHD cognition and mood regulation
Depression
Pain
Work / school attendance and performance
Sleep Disturbance in ADHD
Sleep disorders are common in patients with ADHD of all ages — is it a symptom of ADHD or a side effect of treatment?
Incidence of pre-treatment sleep problems in children is about 20%; increases to >85% by age 21.
Three types of sleep problems in ADHD:
initiation insomnia / “can’t turn off” multiple awakenings / restlessness difficulty awakening in the morning Chronic Delayed Sleep Phase Syndrome
Corkum et al. JAACAP.1999;38:1285; Regestein and Pavlova. Gen Hosp Psychiatry. 1995;17:335. Dodson WW.
Gender Issues in ADHD. Advantage Press 2002; ch 13.
Medication Management of
ADHD Sleep Disturbances
Since the inability to shut off is a manifestation of ADHD, treat the ADHD with another dose of medication.
Counter-intuitive. If a person believes their ADHD medication will keep them awake, they will be awake all night.
Take a “no-risk trial nap” on their optimal dose of stimulant medication.
When they can nap, they know that an evening dose will actually help them to sleep.
Treatment-Emergent Insomnia
Fine tuned the dose;
Evaluate other sources of stimulant medications
Switch molecule
Move last dose earlier or use step down dose
Melatonin 1 mg; When?
Clonidine 0.1 mg or Guanfacine 1 mg at HS
Mirtazepine; ½ of a 15 mg tablet at HS
2nd line or alternative agent.
Summary
The early awareness of the emotional aspects of
having an ADHD nervous system was ignored and
then forgotten.
One-third of people find emotional regulation is
most impairing aspect of their personal ADHD.
People with ADHD have to be persistent with their
clinician to educate them about the importance of
their hardwired emotional experiences.
Medications can potentially provide dramatic
benefits so that psychotherapy is tolerable.