Assessment in multisite randomized clinical trials of patients with autistic disorder: the Autism RUPP Network. Research Units on Pediatric Psychopharmacology.
Testing kids with severe autism means rewriting the ruler—use caregiver proxies, short flexible tasks, and cross-site drills.
01Research in Context
What this study did
The Autism RUPP Network ran a medicine trial across many clinics.
They had to change every test so non-verbal kids with autism could still take part.
Caregivers answered questions for kids who could not speak.
Staff at each site practiced scoring the same child until they matched.
What they found
The paper only tells how they built the new toolkit.
No drug results are listed here.
How this fits with other research
Hattier et al. (2011) later showed most antipsychotic trials still use 25-plus different rulers.
That review proves the RUPP fix is still needed today.
Van Gaasbeek et al. (2026) pooled early ABA trials that used RUPP-style caregiver scales.
Their meta-analysis found big gains, showing the tools work outside labs.
Konstantareas et al. (1999) listed gaps the RUPP team then filled, so this paper extends that roadmap.
Why it matters
If you test any intervention with autistic clients, copy the RUPP recipe.
Pick proxy reporters for non-speakers.
Train your team until scores line up across staff and days.
Use brief, flexible cognitive packs instead of long fixed ones.
These steps keep your data clean and your clients included.
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02At a glance
03Original abstract
Assessment of autistic disorder (autism) symptoms, primary and secondary, poses more challenging problems than ordinarily found in multisite randomized clinical trial (RCT) assessments. For example, subjects may be uncommunicative and extremely heterogeneous in problem presentation, and current pharmacological treatments are not likely to alter most core features of autism. The Autism Research Units on Pediatric Psychopharmacology (RUPP Autism Network) resolved some of these problems during the design of a risperidone RCT in children/adolescents. The inappropriateness of the usual anchors for a Clinical Global Impression of Severity (CGI-S) was resolved by defining uncomplicated autism without secondary symptoms as a CGI-S of 3, mildly ill. The communication problems, compromising use of the patient as an informant, were addressed by several strategies, including careful questioning of care providers, rating scales, laboratory tests, and physical exams. The broad subject heterogeneity requires outcome measures sensitive to individual change over a wide spectrum of treatment response and side effects. The problems of neuropsychologically testing nonverbal, lower functioning, sometimes noncompliant subjects requires careful instrument selection/adaptation and flexible administration techniques. The problems of assessing low-end IQs, neglected by most standardized test developers, was resolved by an algorithm of test hierarchy. Scarcity of other autism-adapted cognitive and neuropsychological tests and lack of standardization required development of a new, specially adapted battery. Reliability on the Autism Diagnostic Interview (currently the most valid diagnostic instrument) and other clinician instruments required extensive cross-site training (in-person, videotape, and teleconference sessions). Definition of a treatment responder required focus on individually relevant target symptoms, synthesis of possible modest improvements in many domains, and acceptance of attainable though imperfect goals. The assessment strategy developed is implemented in a RCT of risperidone (McDougle et al., 2000) for which the design and other methodological challenges are described elsewhere (Scahill et al., 2000). Some of these problems and solutions are partially shared with RCTs of other treatments and other disorders.
Journal of autism and developmental disorders, 2000 · doi:10.1023/a:1005451304303