The Interagency Autism Coordinating Committee (IACC) is a Federal advisory committee that coordinates Federal efforts and provides advice to the Secretary of Health and Human Services on issues related to autism spectrum disorder (ASD). The following are comments from Lee Wachtel, MD, a child psychiatrist at the Kennedy Krieger Institute in Baltimore, MD:
Lee Wachtel, MD
January 17, 2018
Hello, my name is Lee Wachtel, and I am a child psychiatrist working at the Kennedy Krieger Institute in Baltimore, where I run an inpatient unit for children, adolescents and young adults with autism who require hospitalization for severe, often life-threatening, and certainly life-limiting, challenging behaviors. I have been in this position for nearly 15 years, and would like to speak today on behalf of my patients, and their families, many of whom have remained under our care at KKI for years, right into adulthood.
The vast majority of our patients are significantly afflicted, and would be characterized in the DSM5 [Diagnostic and Statistical Manual on Mental Disorders] as having autism requiring extensive supports and with intellectual disability. They don’t come to KKI for their autism or ID, however, but rather for the severe self-injurious, aggressive and disruptive behaviors that they display, often within the context of further severe psychopathology that can run the gamut from anxiety, mood and psychotic disorders, and more. These kids are really suffering, and so are their families. These parents will move heaven and earth for their children – one of the hardest parts of the job is telling moms and dads on our waitlist that we don’t have a bed for their bloody and battered child TODAY – but none of our parents are glad that their child has autism, or see their son or daughter’s autism and associated suffering as part of neurodiversity. In fact, most of the parents would sell their soul for their child to not have autism. As one parent who spent 30 years campaigning for the best services for his son recently told me, “I would walk through perdition’s flames for my son, but I don’t buy into the autism fairytale.”
Not my words, but those of a parent who has walked the autism walk for 30 years. And I hear many such comments. I know very well that this type of response, and the mere existence of the types of severely afflicted autistic kids in our care, flies in the face of the overriding 2018 agenda for autism, where everything is rosy and diverse, and some even suggest the removal of the autism as a psychiatric illness. I would suggest that the DSM5 characterization of autism does not accurately describe the condition, and that there are likely many conditions currently all thrown together into the autism rubric, which only hinders science and our ability to make important advances to help everyone along this range of diagnoses. But I’m less for splitting hairs over diagnosis, and more for making sure that those who don’t currently fall into the happy and hopeful side of the diagnosis – at least not happy and hopeful today, but with the potential for so much improvement – still have a voice, and do not become the black sheep of the autism community just because they aren’t blogging or reciting soliloquies at Lincoln Center. Because these autistic kids with severe behavioral, psychiatric and medical concerns, as well as significant cognitive disability, really do exist, and so do their families, who are less than enamored with autism, and are frankly heartbroken and exhausted. These kids need our understanding and help just as much as the autistic child contemplating best strategies to succeed at college. And these kids will continue to need the support of the autism community as they become adults, as they will not be able to live independently, will require extensive supports and substituted decision-making, and can’t be pushed into models that just don’t meet their unique needs.
I encourage the IACC, and autism community in general to consider several things. First, the IACC needs to prioritize research on the treatment of self-injurious and aggressive behavior. These behaviors are highly prevalent — studies show about 1/3 of autistic kids engage in SIB and over half in aggressive behaviors, yet very little attention is paid to this devastating problem. The IACC should host a panel focused on these dangerous behaviors. Not only are these behaviors dangerous to the children and families involved, but they often preclude participation in inclusive, community-based educational and vocational programs. These behaviors are often physiological in etiology — typically from a co-morbid psychiatric disorder, and do not represent “communication” from non-verbal individuals. It is a medical problem that requires medical solutions.
Second, the IACC must promote a choice-based approach to service provision that ensures adults with aggressive and self-injurious behaviors have a place to go when their families can no longer safely care for them. Some autistic adults have severe behaviors that cannot be managed in community settings. They may not exhibit them all the time, but they need to be somewhere with experienced caregivers who can manage dangerous behaviors when they do occur, with access to professionals who can treat them, as well as structured programs to maximize community access as well as providing satisfying site-based programming. This population needs to be surrounded with well-trained, well-paid aides, because the health and happiness of these adults depends almost exclusively on that one variable. The IACC should write a white paper focused specifically on the service needs of this population.
Finally, we need to invite more parents of severely affected autistic children to have seats on the IACC. These parents represent children who can’t represent themselves, and they require a voice.
Thank you.
