“Diagnostically homeless” Is it ADHD? Mania? Autism? What to do if no diagnosis fits
This approach for children with ‘much more than ADHD’ can help them function better in school and at home
Children with developmental problems and serious psychopathologies often do not fit neatly into DSM diagnoses.1,2 These “diagnostically homeless” children—handicapped by hyperactivity, volcanic rages, extreme anxieties, and other complex problems—need assessment and treatment that address four domains of dysfunction:
- mood/anxiety problems
- possible psychosis
- language/thought disorder
- relationship/socialization problems.
This article offers snapshots of four children with undetermined diagnoses, explores the dilemma of treating such patients without knowing what they really have, and recommends a treatment approach to help them function better in school and at home.
WHO ARE THE ‘DIAGNOSTICALLY HOMELESS’?
Devon is 5. He is extremely hyperactive and impulsive, with a normal IQ but significant language delay. He exhibits little but not absent interest in peers and rages when changes are imposed on him.
Criteria describing impairments in ‘diagnostically homeless’ children
Multiple complex developmental disorder (MCDD)*
Multidimensionally impaired (MDI) syndrome†
Schizotypal personality disorder
Intense generalized anxiety, diffuse tension or irritability; unusual fears and phobias, peculiar in content or intensity; recurrent panic episodes, terror, or flooding with anxiety
Excessive social anxiety associated with paranoid fears
Significant, wide, emotional variability out of proportion to precipitants
Nearly daily periods of emotional lability disproportionate to precipitants
Inappropriate or constricted affect
Magical thinking; illogical confusion between reality and fantasy; grandiose fantasies of special powers
Poor ability to separate reality from fantasy
Ideas of reference; unusual perceptual experiences; suspicious; eccentric
Thought problems including irrationality, sudden intrusions on normal thought process, neologisms or nonsense words repeated over and over; blatantly illogical, bizarre ideas
Thought disorder specifically excluded
Odd thinking; vague, circumstantial, metaphorical speech, overelaborate or stereotyped
Problems with social functioning
Social disinterest, detachment; instrumental relatedness; high degrees of ambivalence to adults, manifested by clinging, overly controlling, needy behavior and/or aggressive, oppositional behavior; limited capacity to empathize
Impaired interpersonal skills despite desire to initiate social interactions with peers
Lack of close friends or confidants other than relatives
* PDD NOS (pervasive developmental disorder, not otherwise specified) is the closest DSM-IV-TR designation.
† Psychosis NOS is the closest DSM-IV-TR designation.
Source: References 1, 3, 8-13.
Devon says he can run faster than cars and swim across the ocean. He has “more than ADHD,” less than autism/pervasive developmental disorder (PDD). Were he older, his grandiosity might seem manic but his age and language delay make this suspect.
Steven is 11, referred “to rule out bipolar disorder” and to evaluate hyperactivity, explosiveness, and nightmares. He didn’t speak until he was 22 months old. He worries that bad people are chasing him, fears skeletons under his bed, has nightmares of vampires, and believes that cartoon characters are real and that Sponge Bob is his protector. He says he sees “scary stuff” out of the corner of his eyes. He does not have a thought disorder; psychotic symptoms are more than an overactive imagination or anxiety.
Lauren, age 12, has been diagnosed with attention-deficit/hyperactivity disorder (ADHD) but now presents with withdrawn, depressed, and defiant behaviors. She is described as a “loner” who has never related well to other children. Lauren speaks about being tortured by her peers to the point of sounding paranoid. Her conversation is extremely circumstantial and rambling.
Richard, age 8, has motor coordination, attachment, and disinhibition problems. He hears voices telling him to do bad things, such as hurt people, steal things, and “break stuff.” He doesn’t mind the voices much, and they don’t pervade his life the way hallucinations do in schizophrenia.
Children such as these are common, and it is unclear whether they have a developmental disorder, the prodrome of a psychotic or mood disorder, or idiosyncratic personalities. They don’t meet criteria for many disorders, including autism, bipolar disorder, schizophrenia, and obsessive-compulsive disorder (OCD). They have more-extensive difficulties than those seen in ADHD, generalized anxiety disorder (GAD), or OCD.
Clinically, they are either forced into a category someone thinks they resemble (such as mania in Devon’s case) or are given a “not otherwise specified” (NOS) label (such as PDD NOS, psychosis NOS, or mood disorder NOS), the severity of which goes unacknowledged.
Problems with ‘NOS.’ Some might consider “NOS” a less-severe problem than a specific diagnosis, but these children are very impaired. They are excluded from treatment studies because they do not meet formal criteria for the designated disorder or they get included erroneously because the structured diagnostic interview doesn’t assess what they really have.
Meaningful psychoeducation for their parents is impossible because no Web site or book exists to help them help their child. Finally, no follow-up studies have been done of this group of children because no one can agree on a diagnosis. Small studies have addressed some of these concerns, but outcomes—not surprisingly—are wide-ranging.3-6
NOS diagnoses also don’t adequately address children with marked anxiety, unusual fears, and perseverative behaviors who are socially clumsy but manage reciprocal social interaction. These children are substantially disabled by:
- attention difficulties
- mood dysregulation (including anxiety and/or manic symptoms)
- trouble with transitions/change
- motor problems (not infrequently)
- pragmatic language/social difficulties.
Few tests exist for pragmatic language skills, which include being able to maintain a reciprocal conversation, stay on topic, understand the listener’s needs, and use correct body language and voice tone. Children with PDD, ADHD, and other language disorders are most often disabled in this area of communication.
Diagnostic terms that have tried to classify these children (Table 1) include:
- childhood-onset PDD, described in DSM-III. This category was dropped in DSM III-R to be included in PDD, then largely ignored in DSM-IV when autism criteria were refined.
- multiple complex developmental disorder (MCDD),7-9 which appears to describe children within the autism spectrum (such as PDD NOS)
- multidimensionally-impaired (MDI) syndrome, whose atypical psychosis has been called “psychosis NOS”10-11
- schizotypal personality disorder, which addresses similar symptoms (although mental health professionals are loathe to use a personality disorder diagnosis in a child).12
These designations all include psychopathology in four domains: anxiety, affect regulation, communication, psychosis, and relatedness.
At this time, however, diagnostic conclusions about this heterogeneous group of children are premature. Our classification system does not do them justice, and we need to study them for what they have, rather than forcing them into our current alternatives.
Prevalence. To find out how many patients in our university-based, tertiary-care clinic do not fit DSM-IV-TR nosology, we examined data from faculty evaluations of 624 children and adolescents.13 These included semi-structured interviews of parent and child, rating scales from parents and teachers, and testing information from the schools in two-thirds of cases.
The result: nearly 25% of our child and adolescent psychiatry outpatients are “diagnostically homeless.” Like the rest of our patient population, these children are:
- 80% male
- 60% under age 12
- 86% Caucasian
- 85% living with their biological mothers.
These children are referred to psychiatrists for many reasons:
- ADHD (16%). They have great difficulty with executive functions, such as paying attention, inhibiting impulsive responses, planning and organizing, making transitions from one activity to another, and controlling emotion. Their problems, however, go much beyond ADHD.
- Bipolar disorder (15%) or depression/anxiety (16%). They have catastrophic anxiety and/or frightening rages triggered by apparently trivial circumstances. They balk or “shut down” when people want them to move or act faster than they can move or act.
- To “rule out autism” (19%). More than one-half (56%) of these children have a diagnosable speech or language disorder, compared with 35% among our other child psychiatry outpatients.
- For educational assessment (23%). School systems request guidance for educational interventions because these children are possibly psychotic and disturbing to teachers and children. They may be unable to execute homework assignments and fail their courses but surprisingly do grade-level work on achievement tests.
ASSESSING FOUR DOMAINS
We can consolidate the domains needing assessment into mood/anxiety problems, possible psychosis, language/thought disorder, and relationship/socialization problems. Although evaluating and treating some of these domains may be beyond the psychiatrist’s purview, we must make sure that other professionals attend to them.
Anxiety and mood. Understanding these children’s anxieties is important. A routine fear of bees is a simple phobia, whereas catastrophic anxiety over a highly unlikely impending tornado and perseverative interest in the weather may be more common in a PDD spectrum disorder. Anxiety about going to sleep because a monster is going to suck out one’s brains does not easily fit into the rubric of generalized anxiety.14
Irritability is these youngsters’ most disabling mood symptom. Volcanic anger and rage that prompts referral occurs in numerous conditions, including mania. Many of the children described in Ross Greene’s book, The Explosive Child,15 have conditions other than bipolar disorder. Although parents and teachers often describe these events as occurring without provocation, a good functional behavioral assessment will usually reveal a precipitant.
Assessing children’s social and language skills
Are the child’s social abilities delayed?
Is he uninterested in social situations?
Is he clueless about social interaction?
Autism spectrum disorders including MCDD, MDI, PDD NOS, nonverbal learning disability
Are social interactions deviant?
Schizotypal personality disorder/schizophrenia
Does child appear shut down/behaviorally inhibited in unfamiliar settings, with greater comfort at home or with familiar people?
Language assessment (can be done by psychiatrist)
Was communication delayed but then progressed “normally”?
Developmental language disorder
Did it begin normally and stop?
Was/is it egocentric and/or unidimensional?
Asperger’s disorder; nonverbal learning disability
Was/is it bizarre or paranoid?
Schizotypal personality disorder
Pragmatic language problems?
All of the above, MCDD, MDI, ADHD
Communication domains (may require speech pathologist assessment)
Expressive and receptive language
Pragmatic language (the child’s ability to communicate in the real world; see Table 3)
Audiology (hearing and auditory processing)
ADHD: attention-deficit/hyperactivity disorder
MCDD: multiple complex developmental disorder
MDI: multidimensionally impaired syndrome
PDD NOS: pervasive developmental disorder not otherwise specified
Possible psychosis. These children may have impaired reality testing that can be difficult to assess; thus, deciding whether the child is experiencing psychotic symptoms can be a challenge. The child may be intensely involved with fantasy characters or imaginary companions to such a degree that he or she insists the character is real. 16,17 Developmentally normal fears—as of the dark, monsters, or images from dreams—may preoccupy him or her during the day. Quasi-psychotic symptoms such as these are easily missed if:
- we don’t ask about them
- we assume the child is “just pretending” or has a “great imagination”
- the child does not volunteer the information spontaneously.18
Communication skills children need to learn
In assessing psychotic symptoms, the first goal is to get a detailed picture of unusual thoughts or images the child is experiencing in different settings, including school, home, and with peers. Then evaluate these symptoms in the broader clinical context of how the child is functioning in other domains.
Language/thought disorder. Parents may not recognize that their child has a thought or language disorder because they have filled in the blanks and interpreted for him or her for so long. Asking the child “yes” and “no” questions will not elucidate these disorders, either. The examiner must talk to the child to determine his or her ability to: