The Assessment of ADHD in Persons With Developmental Disabilities
The Assessment of ADHD in Persons With Developmental Disabilities
ADHD
in Persons with Developmental
Disabilities
Pamela McPherson, Michelle Yetman,
Claire O. Burns, and Bob Wynn
P. McPherson (*)
Northwest Louisiana Human Services District, verview of ADHD in Children
O
Shreveport, LA, USA
e-mail: Pamela.McPherson@LA.GOV
with Developmental Disabilities
B. Wynn · M. Yetman
Louisiana State University Health Sciences Center,
Attention deficit hyperactivity disorder (ADHD)
Shreveport, LA, USA is the most common neurodevelopmental disor-
C. O. Burns
der diagnosed in childhood. A recent meta-
Louisiana State University, analysis of 175 studies reported a prevalence rate
Department of Psychology, Baton Rouge, LA, USA of 7.2% (Thomas, Sanders, Doust, Beller, &
Glasziou, 2015). Significant educational, psycho- Table 1 Frequency of ADHD in selected developmental
disabilities
logical, and medical resources are expended in
the assessment and treatment of persons with Frequency of co-occurring
Developmental disability ADHD
ADHD, with estimates in excess of $100 billion
Preterm children 10–30.6%
annually (Doshi et al., 2012). The National
Intellectual disability 18–40%
Survey of Children’s Health (NSCH) indicates Cerebral palsy 22.5%
that 11%, approximately 6.4 million children, Autism spectrum 22–83%
received treatment for ADHD in 2011 (Visser disorders
et al., 2014). This represents a significant increase Fetal alcohol spectrum 49.4–94%
from the 9.4% reported by the NSCH in 2003 disorders
Fragile X syndrome 49.3%
(Visser et al., 2014; Bramlett & Blumberg, 2007).
Velocardial facial 35–55%
Treatment rates may be greater than prevalence syndrome
rates because children with developmental dis-
abilities are often excluded from ADHD research.
In fact, until 2013 the Diagnostic and Statistical Approximately 3% of the population is esti-
Manual of the American Psychiatric Association mated to have intellectual disability with an intel-
did not allow the diagnosis of ADHD in children ligence quotient <70; and within this population,
with intellectual disability. ADHD is the most common comorbid mental
The NSCH documented that among children health diagnosis (Ageranioti-Bélanger et al.,
with ADHD, comorbid conditions are the rule 2012; Hastings, Beck, Daley, & Hill, 2005; La
rather than the exception; 67% of children with Malfa, Lassi, Bertelli, Pallanti, & Albertini, 2008;
ADHD had a comorbid condition, including Neece, Baker, & Lee, 2013). The impact of
46% with a learning disability, 12% with speech ADHD on intellectual function and the inverse,
issues, and 6% with autism (Larson, Russ, Kahn, the impact of intellectual function on ADHD,
& Halfon, 2011). ADHD is comorbid in approx- have been matters of psychometric and broader
imately 50% of youth with fragile X syndrome clinical debate. Until recently it was generally
(Vortsman & Ophoff, 2013). ADHD is estimated accepted that ADHD did not significantly lower
to be present in 22.5% of children with cerebral IQ. A meta-analysis found that children with
palsy (Gabis, Tsubary, Leon, Ashkenasi, & ADHD (without ID), scored approximately 9 IQ
Shefer, 2015). Recent meta-analysis reported a points lower than peers without ADHD (Frazier,
51.2% prevalence of ADHD among youth with Demaree, & Youngstrom, 2004). A study by
fetal alcohol syndrome disorder (FASD) (Han Bridgett and Walker (2006) replicated this finding
et al., 2015; Millichap, 2008; Popova et al., in adults but cautioned that the difference was
2016). Tobacco use can result in intrauterine small and likely reflects only a subset of individu-
growth retardation (Milnerowicz-Nabzdyk & als with ADHD. The greater controversy has been
Bizon, 2014). This in turn causes low birth the relationship between ID and ADHD.
weight and developmental complications. Historically, ADHD symptoms among an ID pop-
Maternal smoking and maternal nicotine ulation were considered to be part of the ID diag-
replacement use during pregnancy are associ- nosis, as such ADHD symptoms were considered
ated with increased risk of ADHD (Joelsson to be common features in this population (Einfeld
et al., 2016; Zhu et al., 2014). The use of illicit & Aman, 1995; Gjaerum & Bjornerem, 2003;
substances during fetal development is associ- Hurley, 1996). The widely held belief that ADHD
ated with birth defects which contribute to symptoms were inherent in an ID population dis-
developmental disorders, including ADHD couraged comorbid diagnosis and curtailed
(Hagan et al., 2016; Konijnenberg, 2015). ADHD research among youth with ID (Antschel,
Postnatal lead exposure has been linked to Phillips, Gordon, Barkley & Faraone, 2006).
higher risk of clinical ADHD (Kim, Lee, Lee, & More recently, numerous large-scale studies
Hong, 2014). See Table 1. have examined the association between children
Assessment of ADHD in DD 129
t heory of the time that neurodevelopmental disor- inhibit this monoamine. More recently scientific
ders such as intellectual disability were advances have shown that stimulant medications
“brain-injured child syndromes.” Children who actually do the opposite; however, his hypothesis
displayed behavioral concerns associated with set the stage for further research in to the role of
hyperactivity were considered to have “minimal catecholamines in ADHD (Baumeister et al.,
brain dysfunction” (Nigg & Barkley, 2014). 2012). Although the DSM-5 states that no spe-
Minimal brain damage or dysfunction (MBD) cific biological markers can be used solely for
represented the prominent theory of ADHD at the diagnosis (APA, 2013), there is substantial evi-
time, highlighting a neurological etiology and dence of neurological and genetic contributions
focus on cognitive abilities (Taylor, 2011). (Niggs & Barkley, 2014). Magnetic resonance
The advent of EEGs provided additional evi- imaging (MRI) is exploring the neural signatures
dence for the role of neurological differences in of ADHD subtypes (Fair et al., 2012). Whole-
children with behavioral symptoms characteristic genome sequencing is providing evidence of the
of ADHD. Early studies found abnormalities in genetic and epigenetic influences in the etiology
EEGs for children with hyperactive symptoms, of “neurodevelopmental spectrum disorders”
which researchers hypothesized were due to dif- including ADHD, ID, and ASD (Kiser, Rivero,
ferences in cortical systems (Knobel, Wolman, & & Lesch, 2015).
Mason, 1959). Research on ADHD shifted
toward neuropsychological testing around the
1950s with research focused on using neuropsy- Official Classification of ADHD
chological measures to assess and diagnose dis-
orders that were considered organic brain Over time neuropsychological advances have
disorders (Baumeister et al., 2012). This trend informed our understanding of ADHD. This is
has continued, as assessment of ADHD currently reflected in shifting terminology that can be con-
typically includes psychological measures. fusing. Tracking the name changes through the
However, there is continued debate over whether editions of the Diagnostic and Statistical Manual
ADHD has a primarily neurological or behav- helps explain the variety of terms in the literature
ioral/psychosocial basis. Cultural differences in and the “Does he have ADD or ADHD?” ques-
such viewpoints have been reported, as many tions from parents. What is now called ADHD
North American countries view ADHD as a neu- was first formally recognized as a diagnosis in
rodevelopmental disorder, while European coun- the DSM-II (APA, 1968) as “hyperkinetic reac-
tries historically perceived the disorder as a tion of childhood.” This name reflects psycholo-
behavioral one related to conduct disorder (Niggs gist’s observations and measurements of behavior
& Barkley, 2014). leading to a shift from the idea of brain damage
Burks (1960) first used the term “hyperactive as a cause for ADHD symptoms.
child syndrome,” hypothesizing that ADHD As neuropsychological advances expanded,
symptoms were related to cortical overstimula- our understanding of brain function focus shifted
tion (Niggs & Barkley, 2014). These findings to the inattention symptom domain. Douglas
reinforced the hypothesis that hyperactive symp- (1972) emphasized the role of core difficulties
toms had an organic origin, providing further that included ability to sustain attention, ability
support for the use of pharmacological interven- to inhibit impulsivity, and organized planning.
tions (Baumeister et al., 2012). In 1970, Douglas highlighted the importance of integrat-
Kornetsky (cited in Baumeister et al., 2012) pro- ing information from multiple sources (e.g.,
posed the “catecholamine hypothesis” based on teacher report, parent report, behavioral
observations of the effect of amphetamine on observations, and clinical tests) in making a
individuals with hyperactivity. He hypothesized diagnosis. This conceptualization gave rise to
that hyperkinetic activity was caused by an performance- based measures, such as the
excess of norepinephrine and that amphetamines Conners’ Continuous Performance Test, third
Assessment of ADHD in DD 131
edition (CPT-3; Conners, 2008), which assesses considerations in the assessment of comorbid
difficulties with attention. The pattern of ASD and ADHD. For individuals with an exist-
responses can indicate symptoms such as inat- ing ASD diagnosis, Mahajan et al. (2012) recom-
tention, impulsivity, vigilance issues, or difficul- mend that the individual receive a comprehensive
ties with arousal (Conners & Sitarenios, 2011). ADHD evaluation if they display ADHD symp-
This is reflected in the DSM-III (American toms that do not improve through the interven-
Psychiatric Association, 1980) shift to “attention tion plan to target difficulties associated with
deficit disorder.” ASD. Although intervention approaches may
The DSM-III was the first version to use the overlap, there are often different recommended
terminology “attention deficit disorder” allowing treatment approaches for ASD and ADHD (May
for the specifier “with or without hyperactivity.” et al., 2016).
This marked an important shift, as it acknowl- In parallel to the DSM, the International
edged that children may meet criteria if they were Classification of Diseases (ICD) has evolved
inattentive but lacked hyperactive behaviors from a descriptive to etiologically based diagnos-
(Niggs & Barkley, 2014). The DSM-III specifi- tic approach. The ICD system of classification
cally precluded the diagnosis of ADHD in chil- dates to the early 1900s. The early versions were
dren with ID or PDD (Mallett, Natarajan, & Hoy, called the International List of Causes of Death.
2014). The name “attention-deficit/hyperactivity By the 1940s, the World Health Organization
disorder” was first used in DSM-III-R in 1987, assumed major responsibilities for the ICD with
though subtypes related to inattention and hyper- a major shift toward disease classification. At the
activity were not included until DSM-IV in 1994 time of the 9th revision of the ICD in the mid-
(American Psychiatric Association, 2000). The 1970s, a standard international terminology for
DSM-III-R allowed the diagnosis of ADD in mental disorders did not exist. The process of
children with ID but not pervasive developmental integrating DSM and ICD classification systems
disorders (Mallet et al., 2014). Under DSM-IV was initiated with a major shift in the ICD which
criteria, ADHD was diagnosed in children with included a new section “Mental and Behavioral
“mental retardation” only when the symptoms of Disorders.” Since October 2015 the United States
inattention or hyperactivity are excessive for the has used the ICD-10-CM for federal billing pur-
child’s mental age (p. 82, APA, 1994). While poses. The ICD 11 is scheduled for release in
acknowledging the co-occurrence of ADHD and 2018 (French, 2015). Despite the changes in ter-
ID, the DSM-IV did not provide guidance to cli- minology, research has supported the stable
nicians as to how to best determine when symp- description of core symptoms of ADHD across
toms are excessive (Antschel et al. 2006). revisions of the DSM and ICD (Moriyama, Loy,
The Diagnostic and Statistical Manual, Fifth Robb-Smith, Rosenberg, & Hoyert, 2011).
Edition (DSM-5) states ADHD is a neurodevel-
opmental disorder (American Psychiatric
Association, 2013). A major shift in the DSM-5 Overview of the Assessment
is that ASD is no longer considered an exclusion- of ADHD
ary diagnosis for ADHD (American Psychiatric
Association, 2013). Prior to DSM-5, individuals Although ADHD is a common diagnosis, the
with ASD could not receive a comorbid diagnosis assessment is not simple. There is no single test
of ADHD, as symptoms of hyperactivity and or checklist to diagnose ADHD. First, the clini-
inattention were thought to be better explained by cian is faced with the task of verifying the pres-
autism symptomology. However, recent research ence of hyperactivity, inattention, and impulsivity
has indicated that the etiological and develop- in excess of the level expected for mental age
mental mechanisms associated with these two (American Psychiatric Association, 2013). This
disorders are distinct (May, Sciberras, Hiscock, requires knowledge of typical development as
& Rinehart, 2016). This shift raises additional well as the developmental trajectories of persons
132 P. McPherson et al.
Table 2 Conditions mistaken for ADHD in children with behavioral disturbances must be completed as
developmental disabilities
well. Reassessment should be conducted annu-
Psychological Medical Social ally or with changes in symptoms. The level of
Anxiety disorder Seizures Inappropriate impairment must be continually evaluated to
expectations
inform therapeutic and educational interventions
Oppositional Infections Stressors
defiant disorder (Pliszka, 2009).
Disruptive mood Sleep apnea Bullying The DSM-5 encourages comparing the sever-
dysregulation ity of ADHD symptoms to peers of comparable
disorder mental age. To assist the diagnostician, the
PTSD Metabolic
DSM-5 (APA, 2013) includes age-appropriate
disorders
Substance use Lead/toxin examples of symptoms. When assessing children
exposures with developmental disabilities for ADHD, it is
Reactive Sensory important to make the differentiation between
attachment impairment normative levels of hyperactivity and inattention
disorder
for the individual’s chronological vs. mental age.
Intermittent Diabetes
explosive disorder
In fact, the individual’s developmental level and
Depressive Tourette’s intellectual function should be a primary consid-
disorder syndrome eration in the assessment of ADHD symptoms
Head trauma (May et al., 2016). The assessment of ADHD in
Allergies persons with developmental disabilities is chal-
Medication lenging, requiring psychologists, teachers, physi-
side effect
cians, and families to work in unison.
Illicit
substances
Table 3 Attention deficit hyperactivity disorder symp- American Academy of Neurologists, and Autism
toms (Present in two settings at an incidence inappropriate
Speaks are among the organizations with guide-
for developmental level)
lines on ADHD. The American Academy of
Inattention Hyperactivity/impulsivity
Pediatrics (AAP) clinical practice guideline for
1. Often fails to give close 1. Often fidgets with or
attention to details or taps hands or feet or ADHD is endorsed by the American Psychological
makes careless mistakes in squirms in seat Association and warrants review.
schoolwork, at work, or In 2011, the American Academy of Pediatrics
with other activities released new guidelines for diagnosis and treat-
2. Often has trouble 2. Often leaves seat in
ment of ADHD titled ADHD: Clinical Practice
holding attention on tasks situations when
or play activities remaining seated is Guideline for the Diagnosis, Evaluation, and
expected Treatment of Attention-Deficit/Hyperactivity
3. Often does not seem to 3. Often runs about or Disorder in Children and Adolescents. The
listen when spoken to climbs in situations Guideline recognizes ADHD as a chronic condi-
directly where it is not
appropriate (adolescents tion requiring special care. The clinician is
or adults may be limited advised to assess for comorbid conditions and
to feeling restless) rule out alternative causes for inattention, hyper-
4. Often does not follow 4. Often unable to play activity, and impulsivity. Age-specific treatment
through on instructions or take part in leisure
recommendations are noted (Fiks et al., 2016).
and fails to finish activities quietly
schoolwork, chores, or The AAP website provides additional guidance
duties in the workplace and tools for the assessment, monitoring and
(e.g., loses focus, treatment of ADHD.
side-tracked)
The American Academy of Child and
5. Often has trouble 5. Is often “on the go”
organizing tasks and acting as if “driven by a Adolescent Psychiatry (AACAP) released prac-
activities motor” tice parameters in 2007. AACAP practice param-
6. Often avoids, dislikes, 6. Often talks eters recommend that the clinician carefully
or is reluctant to do tasks excessively distinguish both symptoms and impairment with
that require mental effort
the reminder to document impairment in more
over a long period of time
(such as schoolwork or than one setting. If a patient’s symptoms are
homework) observed only at school but an inordinate amount
7. Often loses things 7. Often blurts out an of time is spent finishing schoolwork at home, the
necessary for tasks and answer before a question multiple setting requirement would be met
activities (e.g., school has been completed
materials, pencils, books, (Pliszka, 2009). The importance of assessing
tools, wallets, keys, familial issues is also noted. ADHD is highly
paperwork, eyeglasses, heritable, necessitating family history and family
mobile telephones) function inquiry during the clinical assessment.
8. Is often easily distracted 8. Often has trouble
waiting his/her turn
9. Is often forgetful in 9. Often interrupts or
daily activities intrudes on others (e.g., Screening Versus Assessment
butts into conversations
or games) The American Psychological Association defines
screening as brief queries to determine the need
for a full diagnostic assessment. Screening
Professional Guidelines instruments are designed to identify persons with
for the Assessment of ADHD symptoms of a specific disorder but are not suf-
ficient to diagnose a specific disorder (American
The American Academy of Pediatrics, American Psychological Association, 2017). For the pur-
Academy of Child and Adolescent Psychiatry, poses of this chapter, screening and assessment
American Academy of Family Practitioners, the for ADHD include observations and questions
134 P. McPherson et al.
that may be obtained in person or through the typically includes three tiers. Tier one is consid-
completion of standardized instruments. ered a “core instructional intervention” and offered
Screening for ADHD alerts the clinician to to all students. Tier two interventions are offered
selected symptoms of ADHD. Assessment for to at-risk students, and tier three interventions are
ADHD contains queries for all 18 DSM-5 ADHD individualized interventions (Berkeley, Bender,
symptoms and comprehensive evaluation. Peaster, & Saunders, 2009). Anthony’s teacher
started the school year introducing a tier one
behavioral RtI in the form of a classroom behavior
Screening management program with rewards and conse-
quences and daily conduct grades. When positive
Educational Screening behavioral supports of tier one did not provide the
supports Anthony needed, his teacher referred him
Vignette to a tier two behavior skills group. When Anthony
Anthony is an 11-year-old boy with intellectual continued to struggle, she requested a tier three
disability (ID) receiving special education ser- functional behavioral assessment. Tier two and
vices. His teacher has tracked his lack of prog- three interventions vary by school and state but
ress in the classroom under the school district’s may include small group interventions, check-ins
response to intervention (RtI) protocol. When tier with the school counselor, functional behavioral
interventions did not provide the help he needed, assessment, and/or teaching self-monitoring and
his teacher and parents questioned the possibility regulation skills (Smith, Cumming, Merrill, Pitts,
of ADHD. & Daunic, 2015). The Individuals with Disabilities
The academic, behavioral, and social demands Education Improvement Act (IDEIA) and No
of the school setting often present challenges to Child Left Behind (NCLB) require schools to doc-
children with ADHD. Federal law provides for ument tier interventions. If tier interventions prove
students with challenges under the Individuals insufficient to address challenges, a full assess-
with Disability Education Act (IDEA). The IDEA ment for special services should be requested by
was enacted in 1975 to ensure a free and appro- the parent in writing.
priate public education (FAPE) for children with While grounded in decades of research, RtI
disabilities. The IDEA details the requirements was catapulted into schools following the man-
for individualized educational plans (IEPs) for dates of the 2004 IDEIA and the 2001 NCLB
students who do not benefit from routine instruc- (Fuchs & Fuchs, 2006). It is critical to understand
tion. The first step toward an IEP is tier interven- that federal mandates promote RtI as a method of
tions as part of response to intervention (RtI). RtI “early intervention and assessment.” Federal
does not qualify as special education under mandates allow for schools to designate the
IDEA. Federal law encourages intervention with- exceptionality of specific learning disability and
out labeling students; therefore tier interventions other health impairment without intellectual test-
occur without an educational assessment or ing (Reynolds & Shaywitz, 2009).
assignment of an exceptionality (Preston, Wood,
& Stecker, 2015). In order to promote the early
identification and prompt intervention for strug- Medical Screening
gling students, educators have implemented
response to intervention (RtI) (Haraway, 2012). Vignette
RtI addresses the academic and behavioral Anthony’s parents sought the advice of his pedia-
needs of students. Academic progress is moni- trician. After reviewing Anthony’s history, his
tored with reading and math achievement screen- pediatrician asked the parents and teacher to
ing many times each school year. Behavioral needs complete behavior screening forms. When the
are monitored via school-wide Positive Behavioral results indicated possible ADHD, a psychologi-
Supports and Interventions (Haraway, 2012). RtI cal referral was made for a full assessment.
Assessment of ADHD in DD 135
(Wolraich et al., 2003; DuPaul, Power, Common instruments used to assess and mon-
Anastopoulos, & Reid, 1998). Such instruments itor ADHD are summarized in Table 4. The
are easy to administer and score, fast, and eco- majority of these instruments have not been
nomical and provide the clinician with immedi- normed in an ID population. The Child Behavior
ate feedback regarding the need for a full Checklist is an exception (CBCL; Achenbach
assessment (Biederman et al., 1995). Few screen- and Rescorla 2001). Einfeld and Tonge (1996)
ing tools have been adapted for use in young chil- used a modified version of the CBCL (96 items)
dren. Those that exist have limited evidence in in one of the largest epidemiological studies of
prediction of later ADHD (Arnett et al., 2013). It psychopathology in children with ID. Among the
is important to note that the diagnosis of ADHD 507 children surveyed in the study, 40.7% quali-
should never be made from a rating scale alone fied for ID with a comorbid severe emotional and
(AACAP, 2007). A rating scale is merely one behavior disorder. The Conners’ Teachers Rating
piece of a puzzle requiring clinical judgment to Scale (CTRS) has also been normed for children
assemble the full diagnostic picture. with ID. Fee, Matson, and Benavidez (1994)
Table 4 Common ADHD rating scales. The Conner’s short or long versions may be scored by the parent, teacher, or
child to screen for ADHD and comorbid issues in youth 6 to 18 years
Name of scale Description
ADHD Rating An 18-item scale corresponding to the 18 items in the DSM criteria that is divided into 2
Scale-IV (ADHD subscales: Hyperactivity/impulsivity and inattentiveness. Items are scored on a 4-point
RS-IV) frequency scale ranging from 0 = never/rarely to 3 = very often. It has both a parent and
teacher form. There is also a self-report version that is used less frequently due to
individuals’ general lack of insight. Contains 108 items divided into subscales that aligns
with DSM-5 criteria for ADHD, oppositional defiant disorder, and conduct disorder. The
instrument also provides ratings on the following scales: Inattention, hyperactivity/
impulsivity, learning problems, executive functioning, defiance/aggression, peer relations,
ADHD inattentive, ADHD hyperactive-impulsive, and ADHD
Combined
Brown Rating Scales These scales come in two age versions, ages 3–7 years and 8–12 years. Self-report
for Children and adolescent and adult versions also exist. These measures assess a wide range of symptoms
Adolescents of executive function impairments associated with ADHD
Conners’ Rating
Scale
Child Behavior The CBCL is a widely used measure for identifying problem behavior in youths ages
Checklist 6–18 years. Consists of 120-question checklist with items scored
(CBCL/6-18) On a 3-point scale from 0 = not true to 2 = very true or often true. Scoring provides
information about the presence of possible syndromes and internalizing/externalizing
problems
Home Situation The HSQ-R is a 14-item scale designed to assess attention and concentration across home
Questionnaire- and public situations. This instrument uses a 9-point scale ranging from mild to severe.
Revised (HSQ-R) The SSQ-R examines the child’s behavior across a range of school settings, e.g.,
School Situation classroom, recess, field trips, etc.
Questionnaire-
Revised (SSQ-R)
NICHQ Vanderbilt Available in the public domain, both scales are commonly used by health-care providers to
ADHD Teacher evaluate ADHD symptoms. The teacher version assesses symptoms and performance
Rating Scale within the school setting; parent version assesses perception of school performance and
Parent Rating Scale social functioning. Higher score indicates more severe symptoms, except for the
performance section, where higher score indicates greater performance in academics and
classroom behavior
SNAP-IV Teacher & This instrument is available in the public domain and allows parents or teachers to rate a
Parent Rating Scale child using DSM-IV criteria for ADHD symptoms. Informants rate each item on a 4-point
Likert scale. 26 of the 90 items specifically address ADHD; the remaining items address
other possible conditions contained in the DSM, including ODD, conduct disorder, OCD,
anxiety, and numerous other conditions
Assessment of ADHD in DD 137
used the CTRS to assess children with ADHD tion. The ABC consists of a 58-item checklist that
and children with ID and co-occurring rates inappropriate and maladaptive behaviors in
ADHD. The authors had teachers rate 100 boys either children or adults with intellectual disabil-
between the ages of 6 and 8 using the CTRS. The ity. The ABC has five subscales: disruptive
study divided 100 boys into 4 groups – children behavior, social withdrawal, stereotypic behav-
with ADHD without ID, children with ID, chil- ior, hyperactivity/noncompliance, and inappro-
dren with ADHD and ID, and a control group of priate speech. While not designed specifically for
typically developing children. The study found ADHD, the ABC is one of the most psychometri-
that the clinical profiles of children with ADHD cally validated instruments for determining
and with ID/ADHD did not have significant dif- ADHD in persons with ID (Miller, Fee, & Jones,
ferences with the exception of increased anxiety 2004, Miller, Fee, & Netterville, 2004). Perhaps
in ID youth. The CTRS is a useful instrument of the focus on aberrant behavior rather than ADHD
screening and monitoring of ADHD symptoms in specifically explains why the ABC is not used
youth with ID. more broadly (Antshel et al. 2006).
The Conners’ Parent Rating Scale (CPRS) Rating scales are not the only instruments psy-
does not need to be modified for use with chil- chologists have at their disposal. Continuous per-
dren with ID. A small study conducted by Handen formance tests (CPTs) have proven valuable in
et al. (1997) compared mental versus chronologi- assessing inattentiveness, impulsivity, sustained
cal age norms in order to assess ADHD symp- attention, and vigilance. CPTs measure the abil-
toms in children with intellectual disabilities. ity to maintain focused attention over a period of
Using the CPRS, children were scored using both time (5–20 min depending on program used) as
sets of norms, and results were statistically simi- the child responds to a target stimuli (letter, num-
lar on the majority of the scales. The authors con- ber, or picture) and inhibits responses to nontar-
cluded that it is acceptable to use norms based on get stimuli. Several different versions of CPTs
a child’s chronological age when examining are commercially available including the Gordon
ADHD in an ID population. Other studies have Diagnostic System (Gordon, 1983), the Conners’
supported this finding (Pearson & Aman, 1994). CPT (Conners, 1994), and the Integrated
The NICHQ Vanderbilt Assessment Scales are Variables of Attention, 2nd Edition (Sanford &
in the public domain. In addition to ADHD, the Turner, 1994). Although CPTs are commonly
Vanderbilt screens for oppositional defiant disor- used to assess symptoms of ADHD, these instru-
der, conduct disorder, anxiety, and depression. ments have not been normed on an ID popula-
The teacher version includes queries regarding tion. If used, results should be interpreted with
academic progress and peer interactions to gauge caution in persons with IQ < 70. Likewise, cau-
impairment. Figure 1 shows a sample Vanderbilt tion is indicated in interpreting CPT results in
questions. persons with ASD. The CPT performance of per-
The Aberrant Behavior Checklist (ABC; sons with ASD has indicated deficits in sustained
Aman & Singh, 1986) is one of the few scales attention tasks in individuals with and without
specifically designed for use with an ID popula- comorbid ADHD (Chien et al., 2014; Lundervold
et al., 2012; Murphy et al., 2014). Lundervold In addition, the clinician should inquire about
et al. (2012) caution that low IQ may impair CPT staring spells, tics, headaches, and head trauma.
performance in youth with ASD rendering a false If a child has brief staring spells lasting 10–15 s
indication of ADHD. Some additional measures and has no memory for that time, absence sei-
include the Brown Rating Scales for Children zures may be the reason for inattention. If sei-
and Adolescents (Brown, 2001) and the Swanson, zures are suspected or there is a history of
Nolan, and Pelham Rating Scale (SNAP) seizures, it is helpful to keep a seizure log
(Swanson, 1992), which are described in Table 4. describing the seizure, how long it lasts, and
behaviors immediately before and after the sei-
zure. When Anthony saw the neurologist, he was
Assessment referred for an EEG. His parents were asked to
keep him up very late the night before the EEG so
Vignette he would fall asleep during the test. This increases
The psychologist reviewed psychological test- the possibility of seizure activity. Anthony’s EEG
ing from the school psychologist documenting showed diffuse slowing consistent with ID but no
ID. During screening, the psychologist observed seizure activity or focal deficits. Knowing that
Anthony staring blankly and making a chew- Tourette’s syndrome may mimic ADHD, the neu-
ing motion with his mouth. His parents hadn’t rologist considered the possibility of a tic disor-
noticed this behavior and were asked to make der and asked Anthony’s parents and teacher to
notes if it was observed at home. The psycholo- complete a tic checklist for a week. Stimulant
gist also noticed that Anthony had a long face and medications used to treat ADHD may increase
large ears. The psychologist sent a note to the tics in children with tic disorders.
pediatrician describing these concerns and asking Neurologists may refer children with cere-
the pediatrician to consider referrals to a neurolo- bral palsy (CP) for psychological assessment.
gist to rule out a seizure disorder and a geneticist CP is a disorder of poor muscle control due to an
to screen for fragile X or other genetic condition. abnormality of brain development which occurs
before, during, or after delivery. As a result of CP,
children may have poor balance, stiffness, poor
Medical Specialty Assessments coordination, or uncontrollable movements. The
CDC has reported that approximately 1 in 323
If psychological or medical screening raises con- children is diagnosed with CP (Christensen et al.,
cerns of medical illness, a referral to a neurolo- 2014). Children with CP are at increased risk for
gist, geneticist, ENT (ear, nose, and throat ID, ASD, epilepsy, communication disorders and
specialist/otolaryngologist), or other medical ADHD (Bjorgaas, Elgen, Boe, & Hysing, 2013).
specialist may be necessary. Many insurances CP encompasses a broad array of cognitive and
require the pediatrician to make medical spe- motor impairments. The specific area of brain
cialty referrals; therefore, it is helpful to provide dysfunction and the etiology of the abnormality
the parent with a detailed written description of should be considered by the clinician assessing
observations or historical factors suggesting the the child with CP for ADHD. For example, oro-
need for additional medical assessment. The note facial motor cortex involvement may result in
should also request a copy of the medical special- an expressive language disorder that will impact
ist report. choice of psychological test to determine mental
age (Ballester-Plané et al., 2016). An expressive
Neurologist language disorder may result in a child attempting
Neurological disorders, including seizures, are to speak less. This may confound the assessment
common among children with intellectual dis- of hyperactivity/impulsivity symptoms of playing
abilities (Corbett, 2000). The clinician should ask loudly, talking excessively, blurting out, and inter-
for records of any past neurological assessments. rupting. If the child also has restricted movement,
Assessment of ADHD in DD 139
d isabilities are at increased risk for sleep dis- cognitive effects that overlap with core features
orders. Sleep difficulties in children with ASD of ADHD (Owens et al., 2012). Also, stimulant
are well documented (Richdale & Baglin, 2015; medications used for ADHD are known to impair
Richdale & Schreck, 2009). Developmental sleep in some patients (Spruyt & Gozal, 2011).
disabilities, including fragile X, Down’s syn- However, stimulants can also have the opposite
drome, FAS/FAE, cerebral palsy, and Williams effect and cause paradoxical calming in some
syndrome, are associated with disordered patients (Hvolby, 2015). A thorough sleep history
sleep (Breslin et al., 2014; Maris, Verhulst, should be part of all assessments (see Table 5).
Wojciechowski, Van de Heyning, & Boudewyns, Clinicians suspecting that a sleep disorder may
2016; Goril, Zalai, Scott, & Shapiro, 2016; be complicating the assessment of ADHD should
Koyuncu, Türkkani, Sarikaya, & Özgirgin, 2017; discuss good sleep hygiene practices and have
Curran, Debbarma and Sedky, 2017; Santoro, parents complete a sleep diary.
Giacheti, Rossi, Campos, & Pinato, 2016).
Sleep disorders associated with ADHD typi-
cally present as breathing problems, peripheral Psychological Assessment
limb movements, or activity on somnography.
Breathing concerns can range from obstructive Vignette
sleep apnea to primary snoring (Owens et al., After pediatric and specialty medical assess-
2012). Recent reviews indicate that obstructive ments were completed, the psychologist met with
sleep apnea may be more prevalent in the ADHD Anthony’s parents to gather detailed develop-
population (25–30%) than the general population mental, medical, social, educational, and family
(approx 3%) (Youssef, Ege, Angly, Strauss, & history. His teacher provided RtI tracking forms,
Marx, 2011). The American Academy of functional behavioral assessment results, and
Pediatrics recommends screening for sleep apnea copies of behavioral reports which were valuable
in children with ADHD symptoms (AAP, 2011). in documenting symptoms and the resulting
Following screening, a referral for a sleep study impairment in the school setting.
may be made with subsequent consultation with The psychological assessment of ADHD
an ENT if indicated. Surgical treatment of symptoms in children with developmental dis-
obstructive sleep apnea with adenotonsillectomy abilities will require more time, preparation,
can lead to substantial improvement of ADHD and clinical decision-making than typically bud-
symptoms in many patients (Huang et al., 2007). geted for routine evaluations. Given the com-
Children described as “restless sleepers,” plexity of ADHD and the numerous possible
those who throw covers and pillows from the bed ADHD presentations, it is not surprising that
during sleep and wake askew, may experience there is no single test that can diagnose ADHD
excessive peripheral limb movements.
Movements are tracked during sleep studies and
correlated with EEG readings to rule out seizure
Table 5 A sleep history should be included in all
activity. Up to 44% of patients with ADHD have assessments
symptoms of restless legs syndrome or periodic
Sleep history
limb movement disorder. In children with limb
Evening routine, including electronic/TV use
movements, pain or discomfort may be mistaken Desired bedtime
for ADHD or ODD (Cortese et al., 2005). Difficulty getting the child to bed
Treatment of sleep disturbances with subsequent Difficulty keeping the child in bed
improved sleep efficiency may eliminate the need Sleep onset latency
for ADHD assessment. Sleep disruptions including snoring
There are several confounders in evaluating Nocturnal enuresis
sleep with ADHD and developmental disabilities. Wake time and mood
Sleep deficit in children is known to have neuro- Daytime sleepiness/napping
Assessment of ADHD in DD 141
with ASD and the high rate and wide range of with diagnosis of FASD as a constellation of
comorbidities, the clinician must fully assess physical, behavioral, and intellectual impairments
ASD symptoms and comorbid conditions before resulting from prenatal alcohol exposure
rendering an ADHD diagnosis (Kohane et al., (Williams and Smith, 2015). The AAP has pub-
2012). Intellectual disability (ID) and autism lished an extensive Fetal Alcohol Spectrum
spectrum disorders (ASD) co-occur at high rates Disorders Toolkit on their Healthy Initiative web-
with the severity of one disorder impacting the site (American Academy of Pediatrics, 2017). The
other (Matson & Shoemaker, 2009). Children DSM-5 section for further study has included the
with both ID and ASD have different needs, and FASD-related condition, Neurobehavioral
often a different prognosis, than children who Disorder Associated with Prenatal Alcohol
have either condition alone (Carminati, Gerber, Exposure (ND-PAE). ND-PAE proposed diagnos-
Baud, & Baud, 2007; Gilchrist et al., 2001). tic criteria include impairments of neurocognitive
Therefore, it is important that the clinician distin- functioning (intellect, executive functioning,
guish symptoms due to each condition. learning, memory, and/or visual-spatial reason-
In addition to comorbid disorders, the symp- ing), self-regulation (mood/behavior, attention, or
toms of ASD may confound the diagnosis of impulse control), and adaptive functioning (lan-
ADHD. For example, children with ASD and guage, social communication/interaction, daily
hyperreactivity to sensory stimuli may be fidgety or living skills, and/or motor skills) (APA, 2013).
overactive; others may shut down when overstimu- Doyle and Mattson (2015) have published guide-
lated and appear inattentive. Careful inquiry into lines for the assessment of ND-PAE. Young et al.
antecedents to periods of overactivity and inatten- (2016) have published Guidelines for the identifi-
tion is critical. Detailed descriptions of specific cation and treatment of individuals with AD/HD
behaviors and modulating factors should be and associated fetal alcohol spectrum disorders
obtained. In order to obtain detail, parents may be based upon expert consensus.
asked to describe behaviors as if they are describing Distinguishing between behavioral symptoms
a movie of their child. Social impairment in chil- due to FASD and ADHD presents unique chal-
dren with ASD must be distinguished from that of lenges. ADHD and FASD represent distinct enti-
ADHD. The lack of social reciprocity which is a ties. The expert consensus guidelines note youth
core symptom of ASD may be mimicked or exacer- with ADHD and FASD-ADHD differ on tests of
bated by the impulsivity of ADHD. While children executive function, response to stimulant medi-
with ADHD may form friendships with greater cation, and adaptive functioning (Young et al.,
ease than children with ASD, difficulty sustaining 2016). On psychometric testing youth with FASD
friendships is characteristic of both. Descriptions of tend to have difficulties with encoding informa-
social interactions from the perspectives of caregiv- tion and shifting attention, whereas children with
ers and the child provide the clinician with clues to ADHD have problems with focus and sustaining
understanding the contributions of ASD and ADHD attention (Peadon & Elliott, 2010; Doyle and
to challenges (Leitner, 2014). In addition, the brain Matson, 2015). Children with FASD often pres-
maturation of individuals with ASD differs from ent with early-onset ADHD with predominant
those with ADHD but not ASD and has implica- inattentive symptoms (O’Malley & Nanson,
tions for prognosis and the need for treatment into 2002; Kingdon, Cardoso, & McGrath, 2015). In
adulthood (Murphy et al., 2014). fact, ADHD diagnosis often precedes FASD
diagnosis. FASD should be considered when
children have poor response to treatment for
Fetal Alcohol Syndrome Disorder ADHD and history of PAE (Young et al., 2016).
In addition, children with FASD have greater
Fetal alcohol syndrome disorder (FASD) is the impairment of activities of daily living than chil-
leading preventable cause of developmental delay. dren with ADHD (Crocker, Vaurio, Riley, &
The American Academy of Pediatrics describes Mattson, 2009).
Assessment of ADHD in DD 143
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