Download When Diagnostic Labels Mask Trauma

This study explores adverse life experiences
of troubled youth whose behavior results in
DSM diagnoses that profile problems but fail
to point to solutions.
When Diagnostic Labels Mask Trauma
Robert Foltz, Sidney Dang, Brian Daniels,
Hillary Doyle, Scott McFee, & Carolyn Quisenberry
A
growing body of research shows that many seriously troubled children and adolescents are
reacting to adverse life experiences. Yet traditional
diagnostic labels are based on checklists of surface
symptoms. Distracted by disruptive behavior, we
medicate, punish, or exclude rather than respond
to needs of youth who have experienced relational
trauma.
Among our most traumatized youth are those removed from family, school, and community and
placed in residential settings. Whether in treatment or juvenile justice programs, the focus is more
on managing disruptive behavior rather than fostering healing and growth. As trauma expert Sandra Bloom (1997) suggests, our question should not
be What is wrong with you? but rather What has happened to you?
This article describes findings from the Adolescent
Subjective Experience of Treatment (ASET) study of
youth in residential treatment settings. Their exposure to Adverse Childhood Experiences was surveyed. While a majority of youth had experienced
serious trauma, the diagnoses they were given usually failed to acknowledge these experiences.
12 | reclaiming children and youth www.reclaimingjournal.com
DSM and Disruptive Behavior
The latest revision of the Diagnostic and Statistical Manual (DSM-5) published by the American
Psychiatric Association (APA, 2013) was designed
to update diagnostic categories in light of emerging research. However, since professionals espouse
widely different theories about the etiology of “disorders,” the DSM continues to focus on behavioral
symptoms. This maintains the formidable gap
between diagnosing disorders and prescribing
interventions.
of Mental Health, 2011). DSM-5 continues to establish criteria for disorders strictly based on symptoms
without specifying the causes for behavior, which
often include trauma and negative childhood experiences. Indeed, the DSM was not initially designed
to guide treatment. Yet in reality, once a diagnosis is
obtained, various practice guidelines propose supposedly effective treatments for the identified problem.
With medical disorders,
this makes sense. However, children’s mental
health is confounded
with diagnostic bias and
the confusion of overlapping disorders.
The focus is more on managing
disruptive behavior rather than
fostering healing and growth.
A prominent example of
this disconnect is Bipolar Disorder which is now being diagnosed 40 times
more frequently that just a few years ago (Moreno et
al., 2007). Whatever could be the etiology of these
behaviors, typical treatment involves administering
anticonvulsants, atypical antipsychotics, or both
(Geller et al., 2012; Kowatch et al., 2005). Noted psychiatrist Allen Frances (2013) who was chairman of
the DSM-IV task force strongly criticizes DSM-5 as
collusion between psychiatry and big pharma. Of
particular significance is the new label supposedly
designed to replace Pediatric Bipolar Disorder:
First called “temper dysregulation,” then rechristened with the tongue-twisting disruptive
mood dysregulation disorder (DMDD); the idea
of turning temper tantrums into a mental disorder is terrible…. DMDD is likely to increase
inappropriate antipsychotic use, not reduce it.
(Frances, 2013, p. 177)
If a child’s difficulties were seen as a result of trauma,
then psychotherapy and relational support would
be the preferred treatments. And, in fact there is
clear evidence that many children diagnosed with
Bipolar Disorder have experienced childhood trauma (Etain, Henry, Bellivier, Mathieu, & Leboyer,
2008; Neria, Bromet, Carlson, & Naz, 2005). However, the medications commonly prescribed may
actually reduce levels of oxytocin which are critical
to trust and bonding. This unlisted drug side effect
may impede therapeutic relationships which are at
the core of the treatment of trauma (Foltz, 2008).
Confusion abounds with children whose dysregulated behavior produces a cacophony of comorbid
acronyms (ODD, ADHD, CD, OCD, RAD, PTSD, BD,
etc., ad nauseum). Yet, if behavior meets the DSM
checklists, these diagnoses are deemed statistically
reliable—just not necessarily valid (National Institute
Relational Trauma
The terms relational trauma, developmental trauma,
and complex trauma are used to describe youngsters
who have experienced abuse, neglect, loss, and other adverse life experiences. Trauma in children does
not specifically match any existing DSM diagnosis
(Cook, Blaustein, Spinazzola, & van der Kolk, 2003).
Instead, trauma symptoms can result in a wide range
of possible labels, including Depression, Attention
Deficit Hyperactivity Disorder, Oppositional Defiant Disorder, Conduct Disorder, Generalized Anxiety Disorder, Separation Anxiety Disorder, Reactive
Attachment Disorder, and Post-Traumatic Stress Disorder. Although one or a combination of the above
diagnoses may capture the child’s outward behavioral symptoms, they do not adequately address underlying developmental trauma.
Complex trauma has widespread impact on children and can impair seven domains. These include
Attachment, Biology, Affect Regulation, Dissociation, Behavioral Regulation, Self-Concept, and
Cognition (Cook et al., 2003). With an accurate diagnostic picture, interventions can be tailored appropriately. Without early and effective intervention, traumatized children risk lifelong problems.
The most significant research of the impact of early
trauma is the Adverse Childhood Experiences (ACE)
study by Felitti and colleagues (Anda et al., 2006).
They documented the frequency of traumatic life
events in the childhood of over 17,000 adults enrolled in the Kaiser Permanente health system.
These ten adverse experiences are listed below:
1. Emotional abuse
2. Physical abuse
3. Sexual abuse
summer 2013 volume 22, number 2 | 13
4. Lack of love
5. Physical neglect
6. Loss of a parent
together. In their study, 12.5% of adults reported
4 or more ACEs; those with this level of ACEs experienced significantly more stress and difficulty
controlling anger (Anda et al., 2006).
7. Abuse of mother
8. Substance abuse in the household
Method
9. Mental illness in the household
Adolescents have important insights about their
treatment experience (Floersch et al., 2009).
The Adolescent Subjective Experience of Treatment (ASET) study obtains data through direct
interviews with youth placed in residential care.
This study examines an adolescent’s impressions of treatment effectiveness across domains
10. Household member imprisoned
The tally of adverse events (the ACE’s score) is
strongly related to health, social, and behavioral
problems throughout a person’s lifespan. Not
surprisingly, many adverse events tend to occur
Table 1. Adverse Childhood Experiences in ASET Sample
Adverse Childhood Experience Description
Frequency endorsing ACE
1
Did a parent or other adult in the household often or very often…
Swear at you, insult you, put you down, or humiliate you? Or act in a
way that made you afraid that you might be physically hurt?
56%
2
Did a parent or other adult in the household often or very often…Push,
grab, slap, or throw something at you? Or ever hit you so hard that you
had marks or were injured?
54%
3
Did an adult or person at least 5 years older than you ever…Touch or
fondle you or have you touch their body in a sexual way? Or attempt
or actually have oral, anal, or vaginal intercourse with you?
44%
4
Did you often or very often feel that … No one in your family loved you
or thought you were important or special? Or your family didn’t look
out for each other, feel close to each other, or support each other?
54%
5
Did you often or very often feel that … You didn’t have enough to eat,
had to wear dirty clothes, and had no one to protect you? Or your
parents were too drunk or high to take care of you or take you to the
doctor if you needed it?
26%
6
Was a biological parent ever lost to you through divorce, abandonment,
or other reason?
60%
7
Was your mother or stepmother: Often or very often pushed, grabbed,
slapped, or had something thrown at her? Or sometimes, often, or
very often kicked, bitten, hit with a fist, or hit with something hard? Or
ever repeatedly hit over at least a few minutes or threatened with a gun
or knife?
48%
8
Did you live with anyone who was a problem drinker or alcoholic or
who used street drugs?
44%
9
Was a household member depressed or mentally ill or did a household
member attempt suicide?
32%
10
Did a household member go to prison?
52%
Adapted from Adverse Childhood Experiences study questionnaire available at www.ACEstudy.org.
Used with permission.
14 | reclaiming children and youth www.reclaimingjournal.com
of psychotropic medication, individual psychotherapy, and milieu treatments. This qualitative
information from youth is integrated with quantitative data obtained from clinical records and
data collection.
only 12.5% of the adult population in the original
ACE study reported this level. This extreme level of
trauma has a significant impact on the behavioral
and emotional presentation of the youth referred
for residential care.
The ASET study currently includes 50 youth interviewed at five different residential treatment
centers. There were 29 males and 21 females in this
sample with an average age of 15.7 years (range is
13 to 18 years).
It is short-sighted to medicate
symptoms without recognizing
how trauma compromises
normal development of the
stress management system.
An interview was completed with each participant.
The interview included open-ended questions and
rating scales. The survey also included a resiliency
questionnaire, as well as the Adverse Childhood
Experiences (ACEs) questionnaire. In addition to
interview data, records were obtained from the residential treatment facility, including a current treatment plan, psychiatric progress note, and mental
health assessment.
The ASET interview process was completed on site
at residential centers around a large Midwestern
city. Youth in this sample were all “wards of the
state” and after receiving consent from this State,
assent was received from youth before their participation in the study. Despite the considerable severity of their conditions, remarkably, only one of the
adolescents declined the opportunity to participate
in the ASET study.
Without early and effective
intervention, traumatized
children risk lifelong problems.
The diagnostic profiles of these youth were examined to reveal the amount of trauma exposure (as
measured by the ACEs data acquired during the
interview process and corroborated within their
clinical file) and how this trauma exposure may or
may not influence the clinical presentation leading
to a diagnosis. These data are summarized below.
Results
Table 1 gives the description of each of the ten Adverse Childhood Experiences. It also documents
the percentage of the group of 50 youth who reported that they had experienced each particular adverse event. As seen, the incidence of ACEs
is very high. A majority of the youth (56%) in the
ASET study had four or more Adverse Childhood
Experiences (the average was 4.62). In contrast,
While psychotropic medications are widely used
to manage stress, it is short-sighted to medicate
symptoms without recognizing how trauma compromises normal development of the stress management system. This is the core problem behind
the dysregulation of emotions and behavior in
traumatized children (van der Kolk, 2005). The
dysregulation of Developmental Trauma Disorder impacts behavioral, social, affective, somatic,
and self-attribution domains. This pattern of dysregulation is reflected in diagnostic profiles. In the
ASET sample, 48% of youth had two Axis I diagnoses and 34% had three diagnoses. Six percent had
four or more Axis I diagnoses.
Table 2 shows the frequency of Adverse Childhood
Experiences across the primary DSM disorders.
The most prominent finding is the high level of
Adverse Childhood Experiences for all diagnostic
categories in this population of youth. Scores are
highest for youth with a primary or secondary diagnosis of PTSD and for those diagnosed with Bipolar Disorder. But the level of trauma reported in all
categories suggests that early adverse experiences
can create symptoms associated with a wide range
of childhood disorders. The particular diagnosis a
child receives is likely a function of various temperament and environmental factors.
While Table 2 simply numbers ACEs 1 through 10,
this should not obscure the reality of how traumatic each Adverse Childhood Experience can be.
•
Losing a biological parent was the most frequent
Adverse Childhood Experience, perhaps partially due to high divorce rates in our culture.
•
A highly distressing finding is that a majority
of youth in the ASETS study reported feeling
unloved, the most basic exemplar of relational
trauma.
summer 2013 volume 22, number 2 | 15
Table 2. Frequencies of ACEs based on Primary Diagnoses
Major
Other
Depression diagnoses
N=4
N=6
Primary or Secondary
PTSD diagnosis
N=12
ACE
PTSD
N=5
Bipolar
Disorder
N=19
ODD
N=6
ADHD
N=10
1
80%
68.4%
16.7%
60%
50%
33.3%
75%
2
80
57.9
16.7
70
50
33.3
83.3
3
80
52.6
16.7
40
50
33.3
75
4
60
63.2
16.7
60
50
50
50
5
20
42.1
0.0
30
0.0
16.7
16.7
6
60
57.9
50
70
50
66.7
75
7
60
47.4
50
60
50
16.7
58.3
8
80
57.9
0.0
50
25
16.7
66.7
9
60
52.6
0.0
30
0.0
0.0
66.7
10
80
57.9
50
50
0.0
50
50
Mean
ACEs
6.4
5.8
2.2
4.4
3.25
3.2
6.17
Other diagnoses included Conduct Disorder, Mood Disorder Not Otherwise Specified, Schizoaffective Disorder,
and Depressive Disorder Not Otherwise Specified.
•
•
Likewise, emotional and physical abuse were
reported at very high levels for all diagnostic
categories except Oppositional Defiant Disorder
(ODD).
Adverse experiences were lowest for ODD
youth, but half witnessed violence against their
mother and half had a relative imprisoned.
Only five youth in the study had a primary diagnosis of Post-Traumatic Stress Disorder, consistent
with van der Kolk’s research suggesting traumatized youth present with diverse diagnoses. The
eight youth with a secondary diagnosis of PTSD
had a range of primary diagnoses: Bipolar Disorder, Conduct Disorder, ADHD, Major Depressive
Disorder, and Oppositional Defiant Disorder. This
suggests that difficulties with attention, mood,
and disruptive behavior are associated with the
trauma the child experienced. When choosing
treatment approaches for multiple diagnoses, it
is essential to consider whether to target externalizing behaviors or underlying factors driving
these behaviors. Yet, 58% of these youth were prescribed antipsychotic medications, presumably to
sedate dysregulated behavior rather than manage
psychotic symptoms.
Conclusion
Many youth who show serious troubled behavior
have experienced high levels of trauma exposure. In
spite of the intense Adverse Childhood Experiences
in the ASET sample, their prominent externalizing
symptoms may mask recognition of trauma. Failure
to recognize this can lead to diagnosis and treatment that merely manages symptoms rather than
addressing complex trauma. Thus, when a youth is
given a diagnosis of Pediatric Bipolar Disorder, this
can lead to speculations about genetic liability or
“chemical imbalance” which may distract us from
pursuing healing relationships.
The results of the ASET study further highlight the
importance of re-evaluating our diagnostic constructs for youth who show both serious emotional and behavioral problems in school, residential
treatment, and juvenile justice settings. As knowledge about trauma expands, we are better able
to meet the needs of these youth and help them
achieve positive outcomes.
The ASET data raise concerns about the increasing use
of powerful medications to contain disruptive or dysregulated behavior, rather than providing evidencebased relational interventions. More attention needs
16 | reclaiming children and youth www.reclaimingjournal.com
to be devoted toward understanding the youths’
trauma experience rather than relying solely on descriptions of surface behavior based in traditional
diagnostic paradigms.
The ASET data emphatically underscore the importance of the prevention of, and early intervention
for, trauma in children and youth. Will we invest in
preventing these difficulties or simply address the
aftermath?
Robert Foltz, PsyD, is an associate professor in the
department of Clinical Psychology, Child & Adolescent Track, Chicago School of Professional Psychology.
His co-authors are doctoral students at the Chicago
School of Professional Psychology and assisting in
the Adolescent Subjective Experience of Treatment
(ASET) study. Dr. Foltz may be contacted by e-mail
at [email protected] References
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