Episode 8 - Matthew Siegel, MD on Treatment Programs for Severe Autism Behaviors

Matthew Siegel, MD, Director of the Developmental Disorders Program, Maine Behavioral Health, Associate Professor of Psychiatry and Pediatrics of Tufts University and Faculty Scientist, MMC Research Institute

His program provides a continuum of care for people with severe autism, including outpatient services providing a range of services, and a 12-bed inpatient unit that serves youth age 20 and under. Patients usually have a coexisting psychiatric disorders and exhibit unsafe behaviors. The inpatient stay is usually about 30-40 days. They also have a partial inpatient program for part of the day in addition to an in-home program for very young children. The new Glickman Lauder Center of Excellence in Autism and Developmental Disorders brings treatment under one roof.

Highlights:

• The number of these inpatient units has increased to about 15-18 across the country, though that’s not enough by any means. (NCSA is developing this list and will place it on the NCSAutism.org website). Some are listed here.

• A new clinical group is focused on developing best practices — they will provide a list of resources too.

• Excellent work from multiple disciplines is needed to address severe behaviors, which have various roots.

• The first few days in inpatient are devoted to observation, often stripping away medications, then building a plan including a behavior plan, speech, OT.

• They are looking for a decrease in behaviors over time, not just reacting to the past 24 hours. They look for a lowering of intensity in behaviors, taking much data (it’s an ABA-based program) and analyzing. People don’t tend to go to zero, but safe enough to be discharged, with in-home services, usually funded by Medicaid. They work to transfer the behavior plan to them. About 1/3 of the patients do not return home but go to a group setting. A portion of patients are still not safe even after a comprehensive treatment program — they cannot live with parents and need a facility or residence staffed and able to handle those behaviors.

• A dire lack of step-down options for those who need intensive care. In Maine, there was no change to reimbursement for 10 years, and after Covid there is an intensified staffing shorting. Now there are 2 places in the entire state, and they are full. And out of state, they are full too. Right now the system is entirely paralyzed. People can’t get out of the hospital, and others can’t get in.

• The program had been spread across multiple sites, but now thanks to a large donation they have created The Glickman-Lauder Center, which also includes serving adults as outpatients. A very exciting step. They also do research and training. Having an excellent center does a lot to support research and training.

• Research: How well is this population being attended to by the research community? They surveyed all the treatment studies over the past 20 years, and found the inclusion of people with severe autism has dropped dramatically; 2/3 of studies are not looking at severe autism. One could argue that those who are most severely affected should receive the most attention in research.

• We can’t let the desire to be inclusive to get in the way of attending to the needs of severe autism.

Links:

Maine Behavioral Health: https://www.mainehealth.org/maine-behavioral-healthcare

Glickman Lauder Center: https://www.mainehealth.org/Locations/Maine-Behavioral-Healthcare/Center-of-Excellence-in-Autism-and-Developmental-Disorders

Autism and Developmental Disorders Research Collaborative: https://mmcri.org/?page_id=1089