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By Liza Citron Update 10/4/2021 3:18 PM to include additional information. We may wish to think that the atrocities of institutionalization and the legacy of Willowbrook (Beatings, Burns and Betrayal: The Willowbrook Scandal’s Legacy) are far behind us. There are currently institutions in existence that disturbingly mirror those of the past. The Judge Rotenberg Educational Center (JRC) in Canton, MA, is one such institution. Opened in 1971 as the Behavior Research Institute, the JRC has come under fire for the use of electroshock devices to control residents. Residents at the school are developmentally or emotionally disabled or fall under the vague heading of displaying “autistic-like behaviors.” They are also approximately 90% from the greater New York City metropolitan area and 90% of minority ethnicity. The high proportion of residents from minority ethnic groups suggests a compounding stigma of race and disability. While taxpayer-funded through the public school system, the JRC curriculum is reportedly nonexistent. Students are often placed in front of a computer with little active teaching. In addition, the center’s distance from where most of its residents usually live leaves individuals, families, and communities out of the accountability process. The JRC uses graduated electronic decelerators (GED), delivering as much as 90 mA per two-second shock. For reference, a cattle prod delivers a shock of up to 10 mA for a fraction of a second. The GED is worn like a backpack by the disabled individual and weighs up to 10 pounds. Teachers or other authority figures use remote controls to administer shocks for unwanted behavior. The practice is governed by controversial applied behavioral analysis (ABA) methods and conditioning methods described by behaviorist B.F. Skinner in the 1930s and 40s. JRC staff administer shocks in response to innocuous behaviors such as brief moments of closed eyes or diverted attention. In addition, actions such as crying out while being shocked result in shocks. Regardless of the effectiveness of Skinnerian or ABA methodologies themselves, such treatment can only be described as horrific and torturous. Residents are in a seemingly endless cycle of shocks, and some residents become nonresponsive. At least six people have died at the JRC since its founding. The Food and Drug Administration (FDA) banned the use of GED devices on humans in March 2020. The GED-4, delivering the highest voltage shock, was never approved for use in the first place. In July of 2021, the D.C. Circuit Court overturned the ban, stating it was out of the scope and jurisdiction of the FDA to do so. The JRC argued, and the appeals court judges agreed, that the FDA did not have the authority to enforce the ban. In essence, use of the GEDs could not be banned specifically for the purpose of behavior modification. The devices either had to be prohibited or approved outright, in all circumstances. The legacy of Willowbrook and institutionalization are not as far away as some might think. Individuals on the internet and in- person continue to speak about the conditions for residents at the JRC. Many of them are disabled themselves. Everyone, abled and disabled alike, needs to understand the implications of allowing the JRC to continue shocking vulnerable youth. Read articles like this one and the ones referenced here—sign petitions. Write to your state and federal elected officials asking why taxpayer dollars fund the torment of young people with disabilities. And ask them why better community supports aren’t funded for this vulnerable population. #StopTheShock #StopShockingAutisticPeople Resources and Information
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Join us for the Autism and Mental Health Symposium June 9, 2018 to explore barriers to access to mental healthcare for people on the autism spectrum. Register here.
 It’s well established in research literature that people with autism and related disorders have an increased vulnerability to mental health challenges. Despite this fact the mental health resources available to autistic people and their families in their communities are limited. In Onondaga County the clinician to patient ration in mental health is 1 to 202. In that number few are able or willing to meet the mental healthcare needs of autistic people. Families and individuals are left with little or no options for addressing their mental health care needs. We can do better. Register now for our Autism and Mental Health Symposium to explore the barriers to access. Be part of the solution.  Gluten free diets, casein free diets, elimination diets, supplements, or any combination thereof. Are they any good for people on the autism spectrum? Research still says, no doesn’t really look like it.
Over a decade ago when my children were first diagnosed with autism gluten free and casein free diets were the thing to do to treat autism. I did some digging to find the scientific basis for the belief in this special diet. What I found were studies with small sample sizes, no control groups or poorly matched control groups, no blinded or doubled trials (researchers and participants often knew what they were getting), subjective measurements of outcomes, and no clear mechanism for how the diet was supposed to work or what is was supposed to improve. I tried a gluten free diet anyway because, hey it was only food. After a year my children were still their autistic selves. I left behind the expensive food and dubious claims about special diets. Fast forward to today and there have been some high-quality studies done on not only gluten free and casein diets but also the various restriction/elimination diets that parents try as well as the supplements they are often encouraged to use as treatment for their children’s autism. The results are still underwhelming. People, parents, advocates, therapists, medical and school professionals, throw around words like prevention, cure, and treatment when talking about autism as if they are interchangeable. These terms are rarely explicitly defined. It's just assumed that everyone in the room knows what you're talking about. This vagueness and imprecision with language muddies the waters when trying to have meaningful discussions about helping autistic people.
Let's start with the word prevention. Prevention is proactive, stopping something, something you think is bad, from happening. There are a lot of people invested in finding ways to make sure more autistic people don't happen. Their primary tool is the flood of information about the genetics of autism that has become known over the last decade or so. I'm excited about the great body of knowledge about autism that science is amassing. But as someone raising autistic children and advocating for society to value the humanity of autistic people I can't say that I'm excited about using these scientific discoveries to find ways to prevent others like my children from coming into existence. While some search for ways to use genetic markers to eradicate autism I'm not reassured by insistences that prevention is only for the most "severe" cases. Severity here being defined as those people who would never be able to dress themselves, feed themselves, or speak. This raises several questions. Who defines the severity of autism? Right now, the criteria are arbitrary at best. When is the determination of severity made, before conception, pre-implantation, first trimester? Good luck with that moral and ethical quagmire. Arguing that people with more intense needs shouldn't exist doesn't make the argument for autism prevention any more palatable. Throw into the prevention mix those who still cling to disproven causation theories about autism. Their beliefs about what causes autism lead them to choose from a range of preventative measures that require significant financial output, emotional investment, and leave them vulnerable to adverse health outcomes. We've already seen the results of some those choices with recurring outbreaks of previously rare vaccine preventable diseases. I don't want to repeat myself just now so I'll leave that topic alone for the moment. This post is part of the series Examining the Use of Medical Marijuana for ASD Treatment.
As written the current New York State medical marijuana law does not include ASD in the list of conditions that may be treated with medical marijuana. The following are the only conditions for which medical marijuana use is approved in New York State: · Cancer · positive status for HIV or AIDS · ALS · Parkinson’s disease · multiple sclerosis · damage to the nervous tissues of the spinal cord with objective neurological indication of intractable spasticity · epilepsy · inflammatory bowel disease · neuropathies · Huntington’s disease Included in the New York state legislation is a provision that this list may be amended at will. The legislation also spells out other conditions not necessarily specific to a disease that may be treated with medical marijuana. These include: · cachexia or wasting syndrome · severe chronic pain · severe nausea · seizures · severe or persistent muscle spasm Again there is the provision that this list may be amended at will. Furthermore, there is a provision to consider adding the following conditions to the approved medical marijuana conditions list after 18 months: · Alzheimer’s · muscular dystrophy · dystonia · post-traumatic stress disorder · rheumatoid arthritis The law does not provide any guidelines as to how to evaluate a given condition for potential inclusion in the approved medical marijuana conditions list. Patients and providers will be required to be certified and to register in order to prescribe, dispense, and use only those medical marijuana products approved by the state. Certified patients will be required to carry registration cards identifying themselves as certified users of medical marijuana or they will risk prosecution pursuant to existing laws regarding illegal drugs. There is enumerated in the bill regulations for those designated as caregivers of certified patients. There are also provisions in the law requiring manufacturers and providers to register to manufacture and to provide medical marijuana products. The law also requires these companies to submit their products to laboratory testing in labs approved by the state. It is not clear what standards regarding reporting of levels of active ingredients, content labeling, and reporting of adverse effects manufacturers will be subject to. While the current legislation does not require insurers to cover medical marijuana the cost of various medical marijuana preparations will be set by the state rather than the manufacturers producing the medical marijuana products. The majority of the language of the bill deals with managing the potential revenue generated by the manufacture and sale of medical marijuana products in New York state. For more information see ASD and Medical Marijuana References. This post is part of the series Examining the Use of Medical Marijuana for ASD Treatment.
Given the apparent disregulation of activity in and between various neuronal networks in the autistic brain it is easy to see the appeal of marijuana to artificially stimulate the endocannabinoid system. But it is unclear what happens when you try to artificially stimulate the brain’s natural breaking system. One must proceed with the same caution one would employ when evaluating the use of other pharmaceuticals commonly prescribed to treat some of the symptoms and behaviors common in ASD. It is important for parents to be aware of marijuana intoxication syndrome. In typically functioning individuals symptoms can range from giddiness to depression, introspection, and a sense of time moving slowly. How an autistic individual may react will depend on the baseline function of their endocannabinoid system. Endocannabinoid system functionality is complex. We don’t have a reliable way to measure it. In fact we are still learning how this system works. Since we as yet have no way to measure endocannabinoid functionality parents will have to keep meticulous notes on their child’s behavior before, during, and after administering the preferred Cannabis product. A few of the many areas to monitor are: · motor function (walking, running, hand-eye coordination) · stability of mood · appetite · responses to stressful or new environments · blood pressure · sleep-wake cycle Keep in mind that you may see improvement or deterioration in these and other areas with the administration of cannabinoids. Also keep in mind that your evaluation of functionality in these areas will be somewhat subjective. Consider having one or more independent observers, who are unaware of when or if your child has been administered a preparation of cannabinoids, monitor these areas as well. Further consideration should be given to the following factors before making a decision about using medical ma. There has been little scientific research into the use of Cannabis products for the treatment of ASD. It also remains unclear what, if any, side effects may manifest in children with ASD given Cannabis products for any length of time. While the manufacturers of drugs for medical use are regulated and required by law to provide information about composition and efficacy of their products the manufacturers of Cannabis products are not. Furthermore, while drug companies are required to track and disclose any possible side effects of the products no such requirements currently exist for the manufacturers of Cannabis products. It remains unclear if manufacturers of Cannabis products will be subject to regulation similar to that of other drug companies. Currently New York State does not have a legal manufacturing base for Cannabis products. It remains to be seen whether or not one will be established. Next up, NYS Medical Marijuana Law Summary. This post is part of the series Examining the Use of Medical Marijuana for ASD Treatment.
Research into the relationship between ASD and the functionality of the endocannabinoid system is still in its infancy. However, given current knowledge of how the human brain typically develops and functions along with what we currently know about ASD we can speculate about how the endocannabinoid system may function in individuals with ASD. There are several possibilities to consider in three categories, the endocannabinoids themselves, the degradative enzymes that terminate endocannabinoid activity, and the function of endocannabinoid receptors. 1. Endocannabinoids a. Not enough endocannabinoids produced leading to insufficient inhibition of certain neuronal signals and networks. b. Too many endocannabinoids produced leading to too much inhibition of certain neuronal signals and networks. 2. Degradative Enzymes a. Increased enzyme function leading to a decrease in endocannabinoid activity. b. Under or inactive enzymes leading to an increase in endocannabinoid activity. 3. Receptors a. Too many receptors. b. Not enough receptors. c. Malformed receptors. Any of these factors, in any combination, in any number of the brain regions regulated by the endocannabinoid system may give rise to the various symptoms and behaviors we have come to associate with ASD. Next up, ASD and the Cannabinoids. This post is part of the series Examining the Use of Medical Marijuana for ASD Treatment.
The cannabinoids are the active compounds in marijuana. They take their name from the scientific names of the plants used to make marijuana, usually Cannabis sativa and Cannabis indica. There are many cannabinoid compounds that are found in plants of the genus Cannabis but delta-9-tetrahydrocannabinol (THC) is the one that receives the most attention because of its known psychoactive effects. The following have been reported among the short term effects of THC: euphoria, disinhibition, cognitive deficits, increased hunger, and alteration of sensory perception. Withdrawal of THC after short term use leads to: irritability, restlessness, sleep disturbance, and nausea. Long term use leads to the accumulation of THC in the tissues of the body. Since the brain has no mechanism for breaking down THC, or any of the other cannabinoids, they tend to persist in the brain. Like many other psychoactive drugs THC induces the release of dopamine, the neurotransmitter that plays a major role in the reward, motivation, and decision making processes in the brain. Continued exposure to the cannabinoids leads to a lasting decrease in the strength of the connections between neurons having a depressive effect on their functioning. There is a limited amount of formal research available on the effects of other cannabinoids as well as the potential therapeutic uses of THC. Next up, ASD and the Endocannabinoid System. This post is part of the series Examining the Use of Medical Marijuana for ASD Treatment.
Scientists have identified an endocannabinoid system within the brain. It is so called because the naturally occurring neurotransmitters (chemical messengers that control the function of nerve cells in the brain) that control the endocannabinoid system resemble the active compounds, cannabinoids, found in plants of the genus Cannabis. The two known endocannabinoid neurotransmitters are anandamide and 2-arachidonyglycerol, thankfully referred to as 2AG for those not comfortable with the language of organic chemistry. They are classified as unconventional or atypical neurotransmitters because they do not behave as more familiar neurotransmitters do. There are likely more endocannabinoids that have not yet been identified. The endocannabinoids interact with specific receptors (gates in the membranes of nerve cells made of proteins that open and close under specific circumstances) distributed throughout the brain. These are the cannabinoid 1 (CB1) and cannabinoid 2 (CB2) receptors, so named because they were found to interact with the psychoactive ingredients in marijuana. The CB1 receptor is found in many areas of the brain. These areas include: · cerebellum: responsible for producing smooth, well-coordinated, multi-jointed movements (e.g. walking, running, writing), learning skilled movements (e.g. playing an instrument) · hippocampus: memory · basal ganglia: organization and guidance of complex motor functions, regulate cognitive functions (memory and learning), regulate emotional and motivated behavior · cortex: sensory and motor function, sensory processing, learning, planning and decision making, language processing, attention, cognition · brainstem: regulation of upper and lower body movements (balance, posture, gaze), sensory and motor functions of head and neck, regulates the level consciousness · thalamus: amplifies, computes, and communicates sensory and motor information to the cortex; mediates attention, mood change, behavioral arousal, and transitions in sleep and wakefulness · hypothalamus: regulates internal states (blood pressure, body temperature, emergency responses, etc.) The CB2 receptor is more limited in its distribution but can also be found in the brainstem. The wide distribution of the CB1 receptor means that it has significant influence on just about every function of the brain. Just as there are likely other endocannabinoids yet to be discovered there are likely other unidentified receptors that are part of the endocannabinoid system. Anandamide and 2AG serve as traffic regulators at the synapses where they are found. They are released by neurons when electrical signals come into the cell. The endocannabinoids slow down the signals traveling across a synapse by telling the previous neuron in the sequence of neurons to stop sending signals across the synapse. The effects of these endocannabinoids can last for seconds, minutes, or hours depending on what type of neuron is being inhibited. In addition to the endocannabinoids and their receptors the brain also has a mechanism for dispensing with the endocannabinoids once they have done their job. There are a number of enzymes that break down anandamide and 2AG once their function is no longer needed. Researchers have been exploring ways to exploit the various parts of the endocannabinoid system in order to treat and control chronic pain, anxiety, depression, and obesity. Next in the series, The Cannabinoids. |
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