Questioning a Previous Autism Spectrum Disorder Diagnosis: Can You “Lose” the Diagnosis?

Abstract

CASE: Heidi is an almost 6-year-old girl presenting to your primary care office to establish care because of a change in insurance status. You review her previous medical records before seeing her. She was diagnosed with autism spectrum disorder (ASD) when she was 25 months old. Her parents were initially concerned about language delay. Through a comprehensive evaluation by a developmental-behavioral pediatrician and a child psychologist, including administration of the Bayley Scales of Infant and Toddler Development and the Autism Diagnostic Observation Schedule, she was diagnosed with ASD. Her cognitive skills were reported to be within the average range. Soon after the diagnosis, she began receiving 20 hours of applied behavioral analysis (ABA) per week, as well as music therapy, occupational therapy, and a toddler playgroup through early intervention. Four months after the initial diagnosis, her parents reported that she had started making small improvements in her behavior, used more eye contact, and seemed more socially engaged. Approximately 1 year after the diagnosis, she was receiving 6 hours of ABA per week in addition to starting preschool with an Individualized Education Program. She reportedly continued to show progress with social communication and pretend play skills. At the age of 3 years, 8 months, neuropsychological testing was completed at her parent's request, and her cognitive skills and adaptive skills were reported to be within the average range. She continued to meet the diagnostic criteria for ASD, given her challenges with social awareness, communication, delayed play skills, decreased flexibility, and tendency toward subtle self-direction. She continued to receive speech/language therapy and attended an integrated preschool program within the school district because of her social and communication challenges. She also received ABA 4 hours weekly at home. During your first visit with Heidi, her parents report that she has continued to make progress in all areas, including social skills. She can engage in imaginary play with her friends, ask strangers questions, and comprehend the perspective of others, and she is no longer “rigid.” She is not receiving services outside of school and is only receiving once weekly speech/language therapy in school. Her parents no longer believe that she meets the criteria for ASD, and they are interested in further evaluation. Her parents ask if it is possible to “lose” the diagnosis of ASD. They also want to know if there are other things to be concerned about for her future. How do you respond?

Interventions through Art Therapy and Music Therapy in Autism Spectrum Disorder, ADHD, Language Disorders, and Learning Disabilities in Pediatric-Aged Children: A Systematic Review

“…In contrast, of the 54 music therapy studies, 85% (46) focus on children with ASD [ 13 , 23 , 26 , 27 , 29 , 33 , 34 , 35 , 39 , 40 , 41 , 42 , 43 , 44 , 46 , 47 , 48 , 52 , 53 , 54 , 58 , 60 , 66 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 79 , 83 , 84 , 85 , 88 , 89 , 90 , 91 , 92 , 93 , 94 ], 11.3% (6) focus on children with ADHD [ 22 , 41 , 42 , 52 , 72 , 82 , 94 ], and 3.7% (2) focus on children with language disorders [ 14 , 15 , 16 , 17 , 18 , ...…”

“…A total of 13 single-participant studies (16.25%) were identified, including those by Akinloye et al [13], Charoenphol et al [82], Durrani [56], and Harvánek et al [80]. The following studies were conducted in 2022: Joo [76], Kim and Ho [83], Laubová et al [55], Lee and Hyang [49], Nielsen and Holck [84], Park [38], Hong [85], and Zaro et al [42]. The 2020 article highlights the usefulness of case studies for the in-depth exploration of specific therapeutic effects.…”

“…In contrast, of the 54 music therapy studies, 85% (46) focus on children with ASD [13,23,26,27,29,[33][34][35][39][40][41][42][43][44][46][47][48][52][53][54]58,60,66,[68][69][70][71][72][73][74][75][76]79,[83][84][85][88][89][90][91][92][93][94], 11.3% (6) focus on children with ADHD [22,41,42,52,72,82,94], and 3.7% (2) focus on children with language disorders .…”

“…In mixed studies, questionnaires and observational records were employed as instruments in six studies (35.29%), while assessment tools and scales were used in ten studies (58.82%), and questionnaires and medical tests were used in conjunction with questionnaires in one study (5.8%) as shown in Table 3. Conners children's behavior questionnaire Chen et al [30]; Zhu [31] OAT (Art Therapy Observation) and EAT-A (Therapist Evaluation) Schweizer et al [32]; Schweizer et al [22] OAT-A (Child Observation) Schweizer et al [22] Electroencephalography (EEG) Ramirez-Melendez et al [33]; Lagasse et al [23]; Kostilainen et al [34]; Yum et al [29] Combined Raven's test Zhu [31]; Rabeyron et al [35] Childhood Autism Rating Scale (CARS) Yum et al [29]; Al-Ayadhi et al [36]; Koo and Thomas [37] 5-HT Park et al [38] ADOS and Assessment of the Quality of Relationship (AQR) Mössler et al [27] AMMT (auditory-motor mapping training) Chenausky et al [39] Laban Movement Analysis (LMA) Moo and Ho [40] Autism Behavior Checklist (ABC) Yurteri and Akdemir [41] Autism Diagnostic Observation Schedule (ADOS-2) and Bayley Scales of Infant and Toddler Development (BSID) Zaro et al [42] BRIEF, CSBQ, and Repetitive Behavior Scale-Revised (RBS-R) Schweizer et al [22] Social Communication Questionnaire (SCQ) and the Strengths and Difficulties Questionnaire (SDQ) Aithal et al [43] DUACS (Voices Together) Schmid et al [44] Conners Scale and the Wisconsin Card Sorting Test (WCST) Liu et al [45] Vineland Social Maturity Scale (VSMS) Minaabad and Lomar [46] Parent-Child Movement Scale (PCMS) Moo and Ho [40] Functional Near-Infrared Spectroscopy (fNIRS) Shi et al [47] FEATS (Formal Elements Art Therapy Scale) y PPAT (Person Picking an Apple from a Tree Test) Rajabpour et al [48] Impresión Clínica Global (CGI) Rabeyron et al [35] Korean ADHD Rating Scale (K-ADHDDS) and House-Tree-Person Drawing Test (HTP) Lee ...…”