New Guidelines to Improve Inpatient Care for Kids With Autism

General psychiatric facilities can achieve a level of care for children with autism spectrum disorder (ASD) or intellectual disabilities that is comparable with care provided in specialist units, say US experts who have developed best practice guidelines for inpatient psychiatric care.

Developed from a consensus process involving experts in treating children with ASD or intellectual disability, the recommendations set out the information that should be obtained from children on admission and emphasize the importance of screening for co-occurring medical and psychiatric conditions.

In addition, they highlight the need to adapt the inpatient environment and provide activities appropriate for children with ASD or intellectual disability and, crucially, the need for staff training.

“Kids with autism or intellectual disability now make up 10% to 20% of the population in most child psychiatric units in the United States ― too many for hospitals to just get by using their typical approach,” senior author Matthew Siegel, MD, from the Maine Medical Center Research Institute, Scarborough, said in a release.

Kelly McGuire, MD, MPA, a child psychiatrist at the Center for Autism and Developmental Disorders, of Maine Behavioral Healthcare, South Portland, who led the research, noted that such children are often admitted to hospital for aggression and self-injurious behavior. “They have typically ‘failed’ other treatments, like medications and home services and day treatment and just regular admission to general psychiatry units,” she said.

“The experts that I worked with felt really strongly that general psychiatry units could be just as successful at impacting these behaviors as they are by employing these specific accommodations that we have outlined in this paper,” Dr McGuire Medscape Medical News.

The study was published in the December issue of the Journal of the American Academy of Child and Adolescent Psychiatry.

Filling a Vacuum

The aim of the guidelines, said Dr McGuire, is to fill a treatment vacuum. He noted that there are only nine hospitals in the whole of the United States that have specialized psychiatric units that are dedicated solely to the care of children with developmental disorders.

“Because of that shortage, the vast majority of children with autism or intellectual disability in the nation are admitted to general psychiatry units.”

Dr McGuire added that, typically, general psychiatry units have treatment models that “are just not well adapted for the special needs of this population, and staff on general psychiatry units also typically have limited experience working with individuals with autism or intellectual disability.”

The new recommendations aim to bring together the best practices currently employed on specialized units for children with developmental disorders to assist the general psychiatry units in providing care.

Owing to a lack of research in the area, Dr McGuire and colleagues set up a consensus process in which a survey was sent to six specialized units across the United States.

Telephone interviews were subsequently conducted with clinicians from each of the sites. They then met as a group to go over commonalities and trends from the data that had been collected.

The group then decided on different consensus statements that were based on the practices that they were currently employing. This was followed up with regular conference calls to flesh out the details of those statements.

The result is 11 consensus statements that, the authors note, seek to “strike a balance between identifying best practices and providing recommendations that can be attainable on general units.”

The statements recommend that on admission, information specific to the child with ASD or intellectual disability, such as their personal preferences, means of communication, sensory sensitivities, and triggers and early warning signs, should be obtained, along with information concerning any self-care needs.

They also emphasize that children should be screened for medical problems, particularly those that are common in this population, and current medications should be assessed for adverse effects.

In addition, children with ASD or intellectual disability should be screened for co-occurring psychiatric conditions and level of cognition, which should inform evidence-based pharmacotherapy. The children should also be assessed for communication and occupational therapy needs and should undergo a behavioral assessment.

The recommendations also highlight the need for training staff who provide direct care to children with ASD or intellectual disability. This would include training regarding the range of learning styles, needs, and abilities among such children, as well as de-escalation strategies.

The unit environment should also be adapted to allow the creation of therapeutic spaces and activities appropriate to the children, and there should be structured educational spaces to facilitate their return to school.

The statements underline the fact that in some cases, longer inpatient lengths of stay may be required, particularly for children with co-occurring medical and psychiatric conditions. Finally, they emphasize the importance of correctly applying the standard medical necessity criteria to authorize inpatient care.

Although, taken together, these statements represent the practices that would lift general psychiatric care to that provided in specialist units, Dr McGuire is realistic concerning the fact that not all facilities can implement all the recommendations.

“I would say a barrier [to implementation] would be the amount resource constraints that a lot of inpatient facilities have,” she said. “So based on the environment that a lot of inpatient facilities find themselves in, they may be able to implement more or less of these recommendations.”

However, she added: “The experts I was working with really felt that being able to add any of these recommendations to your current practices would enhance the standard of care that would be provided for these children.”

This philosophy also applies to staff training. “What we recommend in the paper is that, based on resources, it might be most practical for a unit to have perhaps a couple of staff that receive this training and work with those patients that come onto the unit, if there’s difficulty with providing training to all of the staff,” Dr McGuire said.

“At least there should be some people on the unit that are trained in the ability to understand these children’s needs.”

Long Overdue Initiative

Fred Volkmar, MD, Irving B. Harris Professor at the Child Study Center, Yale University School of Medicine, New Haven, Connecticut, commented that the statements are “really excellent” and noted that they are long overdue.

“I think one of the things it underscores is that, especially for children with intellectual disability but also autism spectrum problems, they do sometimes have, like all the rest of us have, needs that are sufficient to warrant hospitalization for mental health problems.

“The really deep back story to this is that, for many years, people basically pretended that if you had what was then called mental retardation, you didn’t have other troubles. There was a term for this called diagnostic overshadowing, in that it overruled everything,” he added.

Although it is now recognized that children with ASD or intellectual disability have a substantially increased risk for some mental health problems, Dr Volkmar said the lack of specialized units to treat these children means that there is “a great unmet need…for these children, who often do need care in a psychiatric setting.”

One highlight of the best practice statements for Dr Volkmar was therefore that of staff training. “Certainly it will help people to be more aware,” he observed.

“I would underscore, of all these things, the training of the staff ― not necessarily a lot of training, but enough training that they don’t feel uncomfortable, that they know what the procedures are.”

There was one point that he would have added to the statements, which, Dr Volkmar noted, “may be a bias on my part, because I probably hear about certain disasters due to the nature of my business.

“I might have mentioned something more about safety in the inpatient setting, in terms of things like seclusion and restraint, which should be minimized when possible but, when needed, to be done in the right way,” he said.

“In my experience, the most likely place that kids get injured in the hospital is if the child is out of control and needs some form of psychical management. So I might have included a sentence in there about training in safety and physical management. I think that it’s an interesting topic and something we really need to think about using more in general hospital settings.”

The study was supported by a grant from the Simons Foundation and the Nancy Lurie Marks Family Foundation. Dr McGuire was supported by a National Institutes of Health T32 grant, a New York State Office of Mental Health Policy Scholar Award, and a Whitaker Scholar in Developmental Neuropsychiatry Award. A coauthor was supported in this work by a grant from the National Institutes of Health and a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development. The other coauthors and Dr Volkmar report no relevant financial relationships.