Page 7 One fundamental characteristic of ASD is a difficulty socializing with, and being accepted by, peers. Another characteristic of ASD in adolescence is the tendency to be rejected by peers, engendering feelings of not belonging to any specific group or culture. The acquisition and consumption of alcohol and drugs-easily available and the "currency" of popularity and status-can provide membership of a sub-culture composed of others who also do not fit into conventional society. However, they do accept those who are different and marginalized. This sub-culture has clear rules and expectations in how to dress, talk and behave, and has its own language and rituals, "friendships" are formed, and the person is warmly welcomed, especially he or she becomes a drug courier or supplier. Thus, for the wrong reasons, the person with an ASD belongs to a group and is accepted and valued by peers.
Page 56 Although this example may seem extreme, Robertson and MacGillivay (2015) suspect there is an overrepresentation of individuals with an ASD in prison settings.
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Sometimes stereotypic behavior in autism can be seriously self-harming such as head banging. Ghaziuddin (2005) posits that there are two main theories pain or addiction to explain why individuals with autism may engage in repetitive self-harming behaviors, and interestingly, both center round the brain's production and release of its owin opiates, endorphins (Widmaier, Raff, and Strang 2006). The pain theory suggests that there are a significant amount of the brain's opioids creating a natural analgesic so that the individual does not feel the pain of their behaviours. The addiction theory proposes that the self-injurious behaviors stimulate the brain to produce endorphins, and then the brain becomes addicted and the behaviors persist in order to maintain the brains opiate production (Ghaziuddin, 2005). Interestingly, we find that this self-harming repetitive behavior is an eerie equivalent to the repetition of drug or alcohol abuse in that the immediate rewards offered by drugs/alcohol can trump the dire consequences of repeated use.
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Epigenetics is the intersection of science and social science, and is directly related to autism and addiction. Epigenetic flags are responsible for turning on or off certain genes. So, though one may carry a particular genetic code, it is not a forgone conclusion that a particular gene will be expressed.
There has been a surge of studies in the ASD and SUD fields targeting oxytocin. Why autism and substance use? Research focusing on those with ASD indicates that oxytocin might improve social function and empathy (Anagnostou et al. 2014). Studies suggest that some individuals with a diagnosis of autism have a variant in the oxytocin receptor gene that could impact social bonding (LoParo and Waldman 2015). Research indicates that something similar may impact the brains of individuals with an SUD, affecting their social connections and making them more vulnerable to seek pleasure through drugs, since social bonding offers minimal rewards (Szalavitz 2017). There is also evidence that the prosocial aspects of a drug like Ecstasy might be due to the stimulation of the brain's oxytocin systems (Dumont et al. 2009).
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Slayter 2007, in her article addressing substance abuse and treatment for those who have an intellectually challenged diagnosis (ICD), goes on to cite Deborah Stone (1997), who, in Policy Paradox: The Art of Political Decision Making, addresses the balance between liberty, equality, and security. Slayter (2007) recommends trying to find the best blend on a case-by-case basis in order to assure that an individual isn't forced to sacrifice liberty for the sake of security, or to sacrifice equality for the sake of liberty. What further complicates this approach is that once an individual is receiving, say, disability benefits, the government will add restrictions that could compromise a person's liberty, and so self-determination may no longer be in play (Slayter 2007).
As mentioned earlier, some individuals with autism have co- occurring intellectual challenges and some do not. Much of what Slayter addresses could easily apply to anyone with a developmental delay including autism. But autism, with or without a co-occurring ICD, can have a particular component that cannot be generalized: lack of social connectedness. Several studies of substance use among individuals with autism without a co-occurring ICD addressed two types of individuals with autism: those who want to socialize and those who do not. Though both groups may have impaired social communication due to autism, the impairment does not necessarily determine an individual's desire to socialize. As Clarke et al. (2016, p.156) note: ...studies have assumed that participants' diagnosis of Asperger syndrome, SUD and their interaction are solely located "within" the individual. As a result, these studies do not acknowledge, nor explore the impact of interpersonal, social, cultural and societal influences on how participants' make sense of their substance use in relation to their diagnosis.
The differences are illustrated by one adult on the spectrum who drank in order to facilitate socializing versus another individual who used substances to escape from socializing: "I have decided that I won't be quitting drinking fully because I noticed a great part of my social life will be gone and to me that's not worth it, and I don't know how it could be done without the booze" (Kronenberg et al. 2014, p.5); "Carl spoke of how at times he used... tobacco....as an escape from social settings: I start smoking. Smoking is an excuse to get out of it all. So I wind up outside with a cigarette in my mouth" (Clarke et al. 2016, p.159).
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EXPANDING ON SELF-MEDICATION
Earlier in this book we explored self-medication and raised questions as to whether it is always the wrong choice. Self-medication in the autism world is particularly controversial. Often children are accused of self-medicating simply by enacting certain behaviors or craving certain foods. One parent shared: " ...his addiction is to sugar, and there has been speculation about the similar addictive qualities of alcohol and sugar" (Anonymous, family member survey, December 5, 2016).
There are many theories and ASD treatments that target the "addictive" behaviors of children with an ASD. In the autism literature, children with a diagnosis are often suspected of self-medicating; not with alcohol or drugs, but instead, with gluten and/or casein. Books fill the autism section of bookstores addressing leaky gut and food allergies and other possible links between certain foods exacerbating or even causing autism. These books address the addictive nature of certain foods and revolve around the theory that these foods create a cycle of addiction: for example, ingredients in cheese and bread might increase autistic behaviors, and then these increased symptoms of autism trigger the child's brain to crave the very foods that might harm them most (Kuzemchak 2012). There are a number of parents and some professionals who refer to this cycle of impairment as leaky gut, a condition related to the gut-brain connection. The differences between leaky gut and gut-brain are important: leaky gut refers to particular food allergies, whereas gut-brain targets the bacteria and digestive complications that often accompany autism (Autism Speaks 2017b).
Many people directly connect leaky gut/ gluten and casein allergies to addiction. One parent's website explains this theory:
Our kids with autism-and hyperactivity-are extremely vulnerable to environmental toxins, and the toxins of its metabolism. There are certain elements in diet, specifically gluten and casein (dairy) that are not completely digested by many children with autism and hyperactivity. Due to insufficient digestion, gluten and casein eventually produce endogenous opioids, components of brain activity similar to morphine. Thus, the diet can have a profound effect on the brain of these children. In other words, it is as if they were "high."
I know it is shocking to many, but it's true. Homeopathic doctors and nutritionists report that some autistic children when they arrive at their offices, have a vacant stare, dilated pupils, do not interact and exhibit inappropriate behavior. Moreover they seem to have an incredible craving for foods containing gluten and diary, such as chicken nugget, macaroni and cheese, ice cream, etc. (de Kwant 2016) The purpose of this book is not to dispel or support such theories (though for those who trust the medical community, there is no empirical evidence that leaky gut is the cause of autism), but what is of interest is the perception that a child with autism could be grappling with addictions as soon as they begin to ingest solid foods. The celebrity Jenny McCarthy, who has a child diagnosed with autism, has championed diets that target leaky gut:
I explained to Oprah that with the proper diet, kids were getting better. I talked about the gut-brain connection... A doctor once said to me that if people don't believe in the gut-brain connection, then tell them to go try that theory in a bar. Order a drink and see what happens. (McCarthy 2008, p.10)
The doctor is right, something does happen, but what happens is complex and nuanced. Some might say it depends on the drink, or how much is consumed; others might say it depends on who's drinking; and still others might conclude it is a combination of a variety of environmental and biological factors. Ultimately, McCarthy's docto's analogy to alcohol's impact is not so simple. Most individuals working in the field of substance abuse would say that it really depends on a particular individual's gut and brain. Many children with an autism diagnosis have frustratingly limited diets- —one mother told
me that for several months her toddler would only eat fish sticks: "fish-sticks for breakfast, lunch and dinner" (Anonymous communication, September 12, 2016). Her pediatrician considered this a sensory issue, and recommended the mother just wait it out, continue to serve the child what the rest of the family was eating, occasionally introduce new foods, and eventually the child would change on his own. But when the mother mentioned her son's extreme dietary limitations to an occupational therapist, the therapist agreed it was a sensory issue, and told the mother that she had to break this habit immediately or the child would always have problems. These two different recommendations by professionals are reminiscent of the theories of harm reduction versus abstinence.
PARENTS' TREATMENT CHOICES
There are well over 100 documented treatments for autism, though few have been studied thoroughly enough to prove their efficacy (Goin-Kochel, Myers, and Mackintosh 2007; Green et al. 2006). Along with treatments such as chelation (a detoxification treatment), aromatherapy and Interactive Metronome (a physiological treatment) are pharmacological options that include Ativan, Xanax, Clonopin, Ritilan, and Adderall (all of which have the potential for being abused) (Goin-Kochel et al. 2007; Green et al. 2006). We can add MDMA (Ecstasy) and marijuana treatments to the list, given their recent popularity. When it comes to treatment, the famous adage seems to apply: "If you've met one person with autism, you've met one person with autism." Unlike some therapies such as aromatherapy or baby massage, which appear to be relatively benign, other interventions (often endorsed by parents) might seem risky or even dangerous. In the autism community, it is not unusual to read or hear comments from parents accusing other parents of child abuse, for either recommending or avoiding particular interventions:
I came home one day a few months after my child had been diagnosed and in my mailbox was an article about how a certain diet would cure my child's autism. No note or name on it. Not many people knew about the diagnosis yet. Not many people had a clue of all the treatments (speech and occupational therapy, social skills, a special preschool etc.) we were already trying. My son was very underweight and a picky eater. The diet in that article seemed impossible to implement. I believe whoever left it meant to help but it made me feel helpless, horrible and angry. (Anonymous communication, December 11, 2016)
Why address parents' treatment choices for their children with an ASD?
There appears to be a parallel to individuals with an ASD making choices for themselves. In both cases, treatment choices are nuanced and complicated, and the burden on parents to determine what is best for their child appears particularly fraught. To some of us, a parent not implementing a recommended diet that could improve the child's outcome may be viewed as a crime; to others, implementing it and not letting the child enjoy foods he likes, especially if he's underweight, could seem equally criminal. Balancing the risks and outcomes are particularly tricky.
The ethics of making choices on behalf of children, the differently-abled, the intoxicated, or impaired are messy and complicated. When an adult with autism states: so why not use marihuana in the same way? i can confirm that in my case, it helps calm me down after overload, it has prevented complete meltdowns, it's more efficient than alcohol in letting me cope with social situations such as parties (especially with loud music) because i'm not as proned to make a fool of myself seeing as my awareness is higher on marihuana than alcohol. sometimes it also helps me to stop my brain from rambling when i'm trying to get to sleep. although i'm fairly sure there are many alternatives out there (Rachel's weighted blanket as an example probably does pretty much the same job for her as a small joint for me) when it comes down to it, i think people should do whatever works for them, as long as nobody - including themselves - gets harmed in the process. (Anonymous communication, November 29, 2009)
Who is to say this adult is wrong? And though this individual's declaration may seem reasonable and rational, it may read differently when juxtaposed to the worries of the parents of a teen with autism whose marijuana use appears less benign: "The scary thing is that I fear that marijuana has become his new 'obsession.' He admitted to daily use and has told me on more than one occasion that he has no intentions of stopping. He sees it as a harmless, 'natural' substance" (Hutten 2010). Putting aside the fact that marijuana is not harmless where it is illegal and can do great harm if a teen is arrested, how can we judge what therapy may be working? Do we find alternatives?
And what alternatives are viable? As one parent of a child with autism suggested, the drugs they have been prescribed sometimes seem more dangerous than alcohol or marijuana:
Having spent half the night looking into this subject I see now that scientists are coming to the realization that marijuana might be useful in treating autism. My son was taking zoloft. We looked it up after our doctor told us there are no studies on how these drugs affect kids. They do know it causes cellular changes in the young brain, but do not know what harm these changes can cause over time. Nice huh... Yeah let's stick with what's legal. What a joke. (Smith 2011)
This father has a point since recent studies suggest that though there may be some benefit of prescribing SSRIs (selective serotonin reuptake inhibitors) such as Zoloft, there are not enough robust studies to prove the benefits of SSRIs outweigh the negative impact (Kolevzon, Mathewson, and Hollander 2006; McPheeters et al. 2011).
ALCOHOL AND RECREATIONAL DRUGS AS TREATMENT FOR AUTISM
There is no easy answer to the questions raised addressing a parent's choices or a self-advocate's self-determination in relation to using illegal drugs or alcohol to informally "treat" the symptoms of autism.
Searching the internet yields an array of iffy treatments that may or not be beneficial. There are apparently legitimate clinical trials now underway researching the impact of MDMA (known as Ecstasy or Molly on the street):
There are currently no FDA-approved pharmacological treat-ments for autistic adults with social anxiety, and conventional anti-anxiety medications lack clinical effectiveness in this population. Based on anecdotal reports, MDMA-assisted therapy may be a suitable intervention for the treatment of social anxiety in autistic adults and warrants further investigation in a randomized controlled clinical trial. (MAPS 2015)
A search of the internet finds a wealth of sites and postings dedicated to cannabis as an effective treatment for autism, despite few, if any, clinical trials:
With regard to human data on use of cannabis for developmental and behavioral conditions, to our knowledge, the only available data are from small case series [small descriptive studies that track patients] or single studies... In sum, none of these studies provide sufficient, high-quality data to suggest that cannabis should be recommended for treatment of ASD or ADHD at this time... …Even if and when studies on cannabis for developmental and behavioral conditions are conducted, they will likely use formulations of oral dronabinol or cannabidiol, both of which can be administered with a known dose and predictable schedule; at this time, the bulk of medical marijuana is sold in plant form, which results in a highly variable dose of active compound and with less predictable onset of effect based on whether it is inhaled or ingested. (Hadland, Knight, and Harris 2015, p.8) For self-advocates and family members, it is hard to know which treatments are healthy and which are harmful. For some with autism, psychedelics may seem like an ideal treatment: I also have the super-fun Aspergers/ADHD/Depression/Anxiety cocktail. Magic mushrooms have given me the ability to help me identify certain problems in my life and then take the steps towards fixing them. They have also pulled me out of suicidal depression more than once, quite literally saving my life. I also find that when I am tripping, or right after, I can understand people's emotions in a way that I normally can't access-almost like the veil of autism is being peeled away for a few hours. (Shroomery.org January 24, 2017) But others may take the same drug and find it extremely detrimental and even dangerous: Aspies often get overwhelmed by too much stimulation and Mushrooms was WAAAAAAYYYYYY too much stimulation for me to handle. On a bad trip, I couldn't look anyone in the face. I couldn't put sentances [sic] together. I would see screaming faces coming at me that werent' Isic] there. Strange (seemingly random) patterns appeared [sic] to be engraved on every surface (even my skin!). Some trips hit me so hard that I would collapse (even though I was on a VERY low dose). I didn't want to be around anyone, and if I was around anyone, they had to speak slowly and softly to me otherwise I felt very afraid. I do not recommend mushrooms for Aspies unless you intend to tackle your darkest inner demons. (Shroomery.org April 10, 2014)
How does a loved one or professional value the person's autonomy and at the same time, keep them safe? Searching autism forums such as Wrong Planet and Reddit, there is a great deal of discussion among individuals on the autism spectrum regarding (mostly the benefits of) alcohol, benzodiazepines (Xanax, Valium, Ativan, Klonopin), cannabis (marijuana, hashish), MDMA (Ecstasy), and LSD and other hallucinogens and opioids. As mentioned earlier, some individuals with autism say these substances have significantly improved functioning, while others share that these drugs caused debilitating dysfunction; and then there are those who find drugs or alcohol have had little impact one way or the other.
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