Autism, Behavioral Treatments, Medications, and the Law
TASA ID: 11342
According to federal law, a functional behavior assessment and a behavior intervention plan should be considered for any student (up to age 21) that has a behavior that interferes with learning.1 An effective behavior assessment needs to examine the antecedents and consequences of a behavior to find out why the behavior is occurring. Different behaviors can have different functions and each functional behavior assessment needs to examine behaviors separately. For example, aggressive behavior may be to avoid performing a task whereas self-injury may be to both escape from demands or a sensory function. Unfortunately, schools and school districts sometimes lump all the behaviors together with multiple functions, which will make the plan less likely to be effective and may result with increased medication use with untoward and even dangerous side effects. Sometimes schools, adult day and residential programs do not have consistent individualized intensive behavior plans due to a lack of training and supervision. For example, some individuals will respond to token boards, earning preferred items after a previously specified number of tokens, but may require variable reinforcement where the time intervals for earning tokens changes, whereas some individuals respond better to fixed intervals for earning their tokens. Some individuals are not ready for token boards and need the preferred item itself after not exhibiting a behavior in order to be effective. Schools, day and residential adult programs will sometimes request families and even doctors to give medication without a proper behavior plan although medication cannot be part of an Individualized Education Program according to federal law.
Individuals with autism and intellectual disabilities are more susceptible to certain side effects. According to an analysis of thirteen studies involving 185,105 individuals, just being on the antipsychotic for at least three months appeared to double to triple the risk of diabetes in youth, and having an autism spectrum disorder increased this risk.2 Furthermore, up to 60 percent of children with autism without clinical seizures have epileptiform discharges on electroencephalograms (EEGs) according to published research.3 Most psychotropic medications will increase their risk for seizures when many individuals already have an increased risk. Individuals with limited communication skills may not be able to express their side effects resulting them in being detected only when life-threatening. Altered pain sensitivity may also result in these individuals from realizing they are experiencing a side effect until it is too late.
Furthermore, as pointed out in one study including 24,372 children and adolescents in eight state Medicaid programs, individuals are receiving antipsychotics rather than behavioral or psychotherapy even when psychosocial approaches are supposed to be first-line treatment for their diagnoses. Children and adolescents with autism spectrum disorders or ADHD “were less likely to receive a psychosocial intervention before receiving antipsychotics than were youth with psychotic or BD [bipolar disorder] diagnoses.” 4
Individuals with intellectual disabilities are more prone to movement disorders from antipsychotics. In a study involving 9,013 adults with intellectual disability and 32,242 adults without intellectual disability, there was an increased risk of movement side effects, which included among others, neuroleptic malignant syndrome, a rare but potentially deadly side effect.5 Neuroleptic malignant syndrome consists of fever, rigidity and autonomic dysregulation- which is part of the nervous system. Neuroleptic malignant syndrome was three times more common in individuals with intellectual disability compared to individuals without intellectual disability. The rate of Parkinson symptoms and akathisia was also increased. Akathisia, a feeling of restlessness and need to move constantly, sometimes manifests itself with increased levels of agitation, which may result in increased dosages of medication.
Another risk of not having effective behavior plans is that individuals may harm and even abuse each other. Although psychiatric symptoms resulting from abuse may be difficult to detect in someone with limited verbal skills, there are certain signs to look for. An increase in dangerous behaviors in an individual with autism may reflect anxiety and depression. “Anxiety comorbidity is associated with greater ASD symptom severity and concomitant impairments in psychosocial functioning. For example, patients with ASDs and comorbid anxiety are at increased risk for displaying externalizing behavior problems.”6 In addition, “[i]n a patient with ASD, depression frequently presents as an increase of existent ASD symptoms. What is important to note is not the symptoms themselves, but their heightened intensity.”7
Because the Individuals with Disabilities Education Act expires at the age of 21, there is very little due process protections for effective treatment for adults with special needs. In New York in 2014, the governor signed legislation allowing for due process procedures to contest a proposed placement to extend to individuals currently residing in out-of-state facilities.8 Unfortunately, this legislation does nothing for individuals who have no placement at all, who reside at home with elderly parents unable to safely care for them.
We need due process protections for all to avoid injuries and unnecessary medication management. While there is a place for psychiatric medication, medication should never replace education.
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1 Individuals with Disabilities Education Act 20 U.S.C. section 1414 (d) (3) (B) (i) (2004).
2 Britta Galling, Alexandra Roldán, René E. Nielsen, Jimmi Nielsen, Tobias Gerhard, Maren Carbon, Brendon Stubbs, et al., “Type 2 Diabetes Mellitus in Youth Exposed to Antipsychotics, a Systemic Review and Meta-analysis,” JAMA Psychiatry 73, no. 3 (March 2016): 247-259, doi:10.1001/jamapsychiatry.2015.2923.
3 Sarah J. Spence and Mark T. Schneider, “The Role of Epilepsy and Epileptiform EEGs in Autism Spectrum Disorders,” Pediatric Research 65, no. 6 (June 2009): 599, doi:10.1203/01.pdr.0000352115.41382.65.
4 Molly Finnerty, Sheree Neese-Todd, Riti Pritam, Emily Leckman-Westin, Scott Bilder, Sepheen C. Byron, Sarah Hudson Scholle, et al., "Access to Psychosocial Services Prior to Starting Antipsychotic Treatment among Medicaid-Insured Youth,"
Journal of the American Academy of Child & Adolescent Psychiatry 55, no. 1 (January 2016): 73, doi:10.1016/j.jaac.2015.09.020.
5 Rory Sheehan, Laura Horsfall, Andre Strydom, David Osborn, Kate Walters, Angela Hassoitis, "Movement Side Effects of Antipsychotic Drugs in Adults with and without Intellectual Disability: UK Population-based Cohort Study,"
BMJ Open 7, (2017): e017406, doi:10.1136/bmjopen-2017-017406.
6 Joshua Nadeau, Michael L. Sulkowski, Danielle Ung, Jeffrey J. Wood, Adam B. Lewin, Tanya K. Murphy, Jill Ehrenreich, et al., “Treatment of Comorbid Anxiety and Autism Spectrum Disorders,”
Neuropsychiatry 1, no. 6 (December 2011): 568, doi:10.2217/npy.11.62
7 Zeynep Ozinci, Tara Kahn, and Laura N. Antar, “Depression in Patients with Autism Spectrum Disorder,”
Psychiatric Annals 42, no. 8 (August 2012): 294, doi:10.3928/00485713-20120806-06.
8 New York State Mental Hygiene Law, section 13.37: 13.38 (2015).
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