“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.
Table 1
Criteria describing impairments in ‘diagnostically homeless’ children
| Domain | Multiple complex developmental disorder (MCDD)* | Multidimensionally impaired (MDI) syndrome† | Schizotypal personality disorder |
|---|---|---|---|
| Anxiety symptoms | Intense generalized anxiety, diffuse tension or irritability; unusual fears and phobias, peculiar in content or intensity; recurrent panic episodes, terror, or flooding with anxiety | Unspecified | Excessive social anxiety associated with paranoid fears |
| Affect regulation | Significant, wide, emotional variability out of proportion to precipitants | Nearly daily periods of emotional lability disproportionate to precipitants | Inappropriate or constricted affect |
| Psychotic-like symptoms | 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/language disorder | 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. | |||
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
