Redefining ADHD

For the Rest of Us

William W. Dodson, M.D., LF-APA

Denver, CO

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

Problem #1

The current diagnostic criteria

don’t work after the age of 15

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

This requires us to totally

rethink

what ADHD is and isn’t

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).

Each element of the functional

definition has many

implications

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.

Part 2

Emotional Management and

Rejection Sensitivity

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.”

Emotional Regulation Problem

Type #2

Rejection Sensitive Dysphoria

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.

Mental and Physical

Hyper-Arousal

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.