'Instruments are good at eliciting information; scores are very dangerous': The perspectives of clinical professionals regarding neurodevelopmental assessment.

LAY ABSTRACT: Autism and attention deficit hyperactivity disorder are common behaviourally diagnosed conditions. One of the key aspects of diagnosis is clinical judgement. Yet despite decades of research, it is only in recent times that researchers have started exploring clinicians' perspectives on diagnosing these conditions. We aimed to add to this body of knowledge by conducting interviews with 17 experienced health care professionals in the United Kingdom to hear their perspectives on diagnosing autism and attention deficit hyperactivity disorder. Clinicians reflected that for some children and young people, diagnosis is reasonably straightforward; however, in other situations, decisions are made on more pragmatic grounds (i.e. will this be helpful). We identified some differences of opinion between professionals and organisation which adds to the complexity of applying a diagnosis. We recommend several areas for future research and point to some practical and philosophical implications of the work.

Overcoming hurdles to intervention studies with autistic children with profound communication difficulties and their families.

LAY ABSTRACT: Autistic children who speak few or no words or who have an intellectual disability are the most in need of new understandings and treatments, but the most often left out of the research that can bring these benefits. Researchers perceive difficulties around compliance with instructions, testing, challenging behaviours and family stress. Although research with these children can indeed be difficult, their continuing exclusion is unethical and unacceptable. Drawing on our experiences testing a possible treatment for children with profound autism, we provide 10 practical guidelines related to (1) interacting physically, (2) combining play and testing, (3) responding to challenging behaviour, (4) finding suitable tests, (5) relationships with parents, (6) relationships with siblings, (7) involving stakeholders, (8) planning the testing times, (9) the role of the clinical supervisor and (10) recruiting and retaining participants. We hope that these guidelines will prepare and embolden other research teams to work with profoundly autistic children, ending their historical exclusion from research. These guidelines also could be useful for conducting research with children with intellectual disabilities.