Feature Issue on Addiction and IDD

Experiencing substance abuse alongside family or friends who are working hard at recovery is challenging under any circumstances. Adding intellectual disability, autism, and a variety of co-occurring mental health issues to the challenges experienced with substance abuse disorder and related support needs is extremely challenging for the person with addiction issues and the people who love them. This came full circle for our family when it became clear that Nathan had an issue with abusing alcohol to resolve his pain and anger. The journey has been hard, dealt many natural consequences for Nathan, and maxed our ability as a family to support him in his community. And to be honest, the timeline gets fuzzy for all of us. It was, and is, a long journey but despite numerous relapses, Nathan has been sober for nearly eight years and we are very happy about that outcome.

Family history

It is important to note that Nathan comes from a family with a history of alcoholism and substance abuse (both of his parents). While we have always talked to our children about their genetic makeup and the added risks they have because of their family history, we were not nearly as forceful in conversations with Nathan until he was already abusing alcohol. This is so odd because we frequently talked to him about his tendency to look for the magic prescription medication cocktail to address some of his emotional and mood issues. We just never thought he’d have access to alcohol, so it wasn’t an issue we thought that we needed to harp on. Clearly, we were wrong.

Nathan Perry (standing), with Brad Perry and Amy Hewitt.

The triggers

Hindsight is always easier, and we can more clearly see the triggers when we look back. But, when we were living it, initially everything seemed to come out of the blue. It never occurred to us that Nathan had access to alcohol, let alone was using and abusing it to find comfort. While we share the same address, we do not share any living space. We made a commitment to Nathan to respect his privacy and we honor this commitment daily. We never go into his apartment without his invitation (and we are never invited) and nearly all his support services are delivered in our part of the house or the community. Thus, we never saw bottles of alcohol because we were not looking for them. Once we discovered his abuse of alcohol and he expressed a desire to quit drinking, when we looked, we often found alcohol in interesting places–like water bottles, mixed with other beverages like Coca-Cola, etc. Nathan, like most alcoholics, was good at hiding it.

We missed the triggers. When his mother died his reaction was somewhat surprising to us. He didn’t seem that upset at the time, didn’t want to talk much about it, hardly cried, and basically went on with life almost like nothing had happened. After some time had passed, we started to hear loud wailing late at night. When we asked him what was going on, at first he told us he was having night terrors. This seemed plausible as one of our sons had them as a child and Nathan’s father had them too. We did all the diagnostic testing for this and there was no indication he had any neurological issues or night terrors. Eventually, Nathan shared that he was thinking about his mom and crying. It took a while for us to realize that his crying was induced by drinking late at night, alone in his apartment. This was discovered when late-night calls to check on him and see why he was slamming, yelling, and crying were met with slurred language, indignation, and rage. These calls were followed by wellness checks, and it became clear that these late-night episodes were an indication that he’d been drinking.

Beyond his parents’ deaths, there are so many other things that served as triggers for Nathan. Politics and the outcomes of a presidential election caused one relapse. Fights with co-workers, incidents on public transportation, misunderstandings and job losses are among the other types of things that can trigger a relapse for Nathan.

The natural consequences

Hangovers. Many people reduce or quit binge drinking because their body tells them to. Typically, after drinking too much, people have severe hangovers that include vomiting, severe headaches, dehydration, and an inability to get out of bed. Oddly, Nathan did not experience hangovers. To this day he has never had a hangover. So, his body was not giving him any natural consequences related to binge drinking at night.

Work. Because of drinking Nathan increasingly was missing work and lying to his boss about why he was unable to come to work. His work productivity waned and he was having a hard time separating his work from his problems. After too many no-call, no-show incidents, he lost his job. He’d eventually get a new one but his ability to keep a job long-term has never been the same.

Finances. When Nathan’s parents were living, they pretty much bought him whatever he demanded they buy him. When their money ran out and they could no longer supplement him, his lifestyle had to change. He had to work to earn money to buy the things he wanted because his Social Security income just barely covered his needs. Losing his job meant he didn’t have money to buy the things he wanted, and that included the quantity of alcohol he'd been buying for himself.

Family/friends. For some alcoholics lying and deception are a part of how they can continue to drink without their loved ones discovering their problem. This was certainly the case for Nathan. While it is common, it is not easy to live with someone who lies to your face and your children’s faces routinely. It grows old. It is tiring. For some alcoholics, when they are drunk, they often get angry and aggressive. Even before alcohol came into his life, Nathan had challenges managing his anger and would have episodic issues with throwing things, breaking things, hurting others, and kicking cabinets and walls in. When he was drunk, he was rageful and simultaneously incoherent. Before we were able to get him into the right treatment, he landed in detox and acute care hospital psychiatric units, and there were routine calls for help to the police (we had excellent support from our police department, we told the dispatcher Nathan had autism, was drunk, that we were his legal guardians and they needed to take instruction from us; they listened to us, and they never touched Nathan until he told them it was ok or we did). At one point a psychiatrist at a local hospital wanted to involuntarily commit Nathan to a psychiatric hospital and it was a near miss preventing that from happening.

Vivid memories of a final incident during a relapse brought us to our maximum capacity to support Nathan and we knew something had to change. We were outside for a long time with the police and emergency medical technicians working with Nathan to get him dressed, encourage him to stop yelling at the top of his lungs, assure him that he was not dying, and get him into the ambulance. This lasted well over an hour. At one point when looking back at the house, we saw both of our young children had pulled the curtains to the side and were staring out at what was happening in their side yard. We simply weren’t sure that we could figure out a way to continue to support Nathan in his own home and simultaneously not expose our children to trauma. We knew at that moment that something had to change.

As legal guardians for Nathan, we have always let him lead the way. We step in very little and only in times when his health, safety, and financial stability are seriously at risk and the consequences would be dire. This time, we had to prioritize our other family members too. We came to realize that if Nathan was drinking, we could not share the same address. We gave Nathan a choice of seeking treatment, going to Alcoholics Anonymous (AA), taking medication, installing technology to monitor his whereabouts and behavior, and going to counseling or he would have to find another place to live. This was not an easy decision for us, but it was what we needed to do. Nathan chose to remain living in his apartment and seeking the help he needed to get sober.

Staff. Nathan has been lucky to have supportive long-term staff who have been with him for decades. In today’s long-term services and supports this is unheard of. While his staff were not substance abuse disorder counselors, they knew what he was going through, and they were there to support him through these challenges. In some ways, they could offer a soft touch while we had to hold him wholly accountable for his actions. They stuck with him and have certainly been extremely helpful in his ability to maintain his sobriety.

Treatment and ongoing support

Vinland Services. We know how fortunate we are to live in a large metropolitan city that has a lot of services available, including substance abuse disorder treatment specifically for persons with developmental disabilities including autism. Nathan tried in-patient treatment and that didn’t last very long before he had to leave; it was simply too hard for him to share living space with a bunch of strangers and that caused problems. So, instead, he was welcomed into intensive outpatient treatment and had excellent counselors. He completed this program a few times and following each relapse, he’d go back. The repetition helped and it finally brought him to a place of being in recovery.

Ongoing individual counseling. Nathan also began seeing an individual therapist and completed dialectical behavioral therapy (DBT) treatment. Again, he went through the DBT program a few times before he was able to put the skills to use. Nathan can struggle with boundaries of all kinds and sometimes with therapists, he wants to be a friend and therapists have professional boundaries. Eventually, he needed a new therapist, and his mental health nurse practitioner suggested the focus be on Post-Traumatic Stress Disorder (PTSD).

PTSD-specific counseling. Nathan started seeing a therapist who specialized in PTSD. This focus helped him to see the connections between his childhood/young adulthood, the co-dependence between him and his parents, and his sense of rage and anger that catalyzed his drinking. Understanding these connections is an important step. Learning how to live today given his past traumatic experiences is an ongoing part of his recovery.

Medication. While not commonly used in the United States, many other countries in the world commonly prescribe the drug Antabuse as a first treatment choice for alcoholics. In this country, Alcoholics Anonymous (AA) and most substance abuse programs frown on the use of Antabuse. After several relapses and the difficulty Nathan was having in completing DBT and outpatient treatment programs, we worked with his mental health nurse practitioner to see if Antabuse was an option for Nathan. Our interest in trying Antabuse was because Nathan really wanted to stop drinking, the treatment programs he had tried were not yet working and as a family, we were struggling to co-exist with him while he was drinking. We also knew that Nathan really does not like to be sick and that the consequences of drinking while taking Antabuse would deter him from drinking. To be honest, the Antabuse worked. Since we had him start taking this medication, he only relapsed one time and that is because we had started letting him take his own medications without supervision and he stopped taking it so he could drink again. He continues to take this medication and we watch him take it daily. We wish this was not needed, but for now, for Nathan, it is.

Alcoholics Anonymous (AA). The outpatient treatment program in which Nathan participated included an expectation that he would attend AA. He did attend and he tried to understand the steps. For a while, he enjoyed going and seemed to like the people he was meeting. But, as he became more sober, he got tired of listening to everyone else’s stories. He’d come home and complain that he was sick of the sadness and the horrible stories he heard at meetings. Nathan also had a hard time keeping a sponsor. It seems that about the time they’d get to know him, they’d stop returning his calls or meeting with him. We never met any of them, but we guess that they simply didn’t understand Nathan or know how to support him because of his disability. Nathan also is not religious and while he tried to go to church and to connect to a higher power, he just never made that happen and was disinterested. When the pandemic hit and AA went online, we were hopeful he’d pick it back up again, but he is simply not interested and it didn’t help him that much; in some ways, he felt a bit rejected from a program that is supposed to be welcoming to all.

Monitoring technology. There were times when Nathan was actively drinking that we would have to be up all night with him. It was impossible to work full-time, raise young children, and get no sleep. We were never able to get a break or go on vacation. Almost 100% of the time we’d be on vacation we’d get a call from Nathan’s staff about some kind of episode, including a time the police were called by the neighbors because they heard Nathan wailing and raging. The police broke down the door and we had to come home from vacation early. As a result, we finally made a decision to use technology to help monitor Nathan at night and while we were on vacation. Interestingly, Nathan was not opposed to the monitoring cameras, but he did not like the sensors on his bed – and as it turned out about two days into the sensors being on his bed, we realized he had sleep apnea and restless leg syndrome for which he has since been treated. This active monitoring using technology identified a few relapses and it also enabled staff to be called to come over to Nathan’s apartment on occasions when his behavior was ramped up and we were gone. Over time, as Nathan became sober, we began removing the technology. We started by removing the sensors and for many years he has not had any monitoring technology. It was a great resource to have available when we needed it for added support.

Sobriety

Recently, I asked Nathan’s nephews, our sons Amos Hewitt-Perry and Jack Hewitt-Perry, to reflect on this journey our family has taken. Amos, now a young adult, wrote, “When I think back about growing up around Nathan’s alcoholism, a number of lessons and memories come to mind. There was a worry that he might hurt himself or someone else, given how out of control he would be when he was drinking. It was also my first introduction to police interactions within the community and our home. I was always aware of the potential danger for Nathan within those interactions given his erratic behavior. I also remember it often impacting family plans and trips due to anxiety over these situations.”

Jack said: “I grew up as a child during Nathan's worst time with his substance abuse, so it was harder for me to understand what was going on. During the day, he would be positive and play games and Legos with me, but then at night, I would hear strange thumping, screeching, and scratching on the other side of my bedroom wall. As a kid, I literally thought it was a monster trying to get me and I would sometimes be afraid. As I grew up, I realized that it was just sober versus non-sober Nathan. What I know now is that substance use disorder can affect anyone, even people with intellectual and developmental disabilities and it is not always easy to see or detect. I think it is likely harder for people like my Uncle Nathan to get into recovery and stay there.”

If there is anything we have learned through all of this, it is that sobriety is a process. There is not a simple fix, it is not a fast process, and it is never easy. Nathan has experienced numerous relapses, sometimes after 5 years of sobriety and other times after just a few months. It isn't predictable. Yet, one should assume that relapse can and will happen. Once Nathan would become confident in himself and his sobriety, we knew to be extra diligent in looking for the signs of a relapse. Talking openly and often about his sobriety and risk of relapse is important and so is ensuring he has alternative ways to respond to common triggers. Nathan wants to live on his own in the community and he has a right to do so. We want to support him to remain in the community. As a family, we all know that his ability to remain in the community in which he wants to live and in his own apartment is increased by his remaining sober. So, it will always be top of mind and an ongoing goal. His sobriety will also always be something we celebrate!