Kelli Arnesen and Dr. Barbara Mandleco, Brigham Young University College of Nursing
Autism spectrum disorders have been diagnosed more than ever before in children, and a cure is yet to be found. Until a cure is discovered, families must depend on health care professionals to aid in the management of autism, which includes pharmacological measures. The medications used to treat autism are only used to treat the symptoms of autism; they do not treat the disorder itself (Tuchman 2003). There are a wide variety of pharmacotherapies used to treat autism. The goal of my project was to determine commonly used medications to treat some of the common symptoms of autism and how effective they were in their goal. I also wanted to know if families thought that using medication to treat their child with autism has worked well for them and why or why not. I conducted 20-30 minute interviews with 8 parents of autistic children, done either over the phone or in person. I asked parents what their children were on, how it has affected their children and families and whether they would suggest using medications for other families to manage their child’s autism.
To analyze the data, I looked for common themes and medications using a frequency based method. I input all the data into a spreadsheet and looked at the frequency each medication was used for and what symptom was used for. Some common medications that were used were fluvoxamine to treat OCD tendancies and anxiety, Focalin to treat hyperactivity and help the child to focus and process information, nutrient adjuncts and digestion medications such as Milk of Magnesia and Digest Rite.
After interviewing all the families, I was surprised at the wide array of medications that were being used for these families I interviewed. Some common symptoms that were being treated were to help the child sleep through the night, increase attention span, improve nutrition and digestion, and reduce OCD tendencies. Each child had their own unique symptoms they had to deal with, which makes it difficult to find a “one size fits all” approach to treating the behaviors of autism. When asked if she would recommend pharmacological therapy to other parents of children with autism, one mother said “I would ask them to consider it, yeah. I’m not saying it’s going to be the right thing for every kid and every situation because their kids are not the same. I don’t think that there’s one answer.”
There were several benefits for these parents in treating their children with autism through medication management. One mother said “the idea was to lower her anxiety so that she could increase her adaptability…it’s like she can access the rest of her brain, and then use those tools. And at first she didn’t know how to use them, but then over time, and that’s the big change is that I can actually reason with her a little bit, and then gradually reason with her more and more because she remembers that last time that worked out.” Another mother had similar success in her son with autism. She said “he’s able and capable of handling communicating and socializing with others. For instance, at school, he’s able to do well and better at school with his studies…he seems not as aggressive.”
When I asked parents whether raising their child with autism had become easier or more difficult, the majority of them said it had become easier. One mother said “I feel like I have more control of my home. Before he was on the medication, I didn’t have any control, there was none. Our home was chaos.”
Within my results, the majority of parents agree that pharmacological therapy is a benefit for their children with autism. Several parents stated that it was difficult to manage; one mother said that “it takes a pretty rigorous oversight. It’s not easy keeping up with the dosage and keeping up with the supply level, and keeping up with him taking them he’s not taking them voluntarily, I have to coax him to take them, and I don’t have a lot of support other than myself to make sure that he takes these. They are taken at different times of the day…one is taken on an empty stomach, the other ones have to be taken on a full stomach, so it’s pretty rigorous and it’s pretty time consuming and it can be pretty hectic.” She goes on to say, however, that the benefits outweigh the struggles and downside of treating their child. Because several of these medications help these children to focus, cognitive behavioral therapy can be better instituted and improve function of these children with autism.
In speaking with these parents, I am amazed at their dedication and focus in helping their child with this disorder. It takes great commitment to stay on top of their medication regimen and a structured schedule to improve the lives of their children. Many parents stated that it can be exhausting at times, but that seeing improvements in their children and family life make it all worth it to them. One mom stated “the positive effects of what it does for him, and his state of being makes it all worthwhile where I feel like I can do this, I can go through this and do this because it really makes a huge difference.”
The results of my study did not yield what I hoped to accomplish, which was to determine an overall treatment regimen that would benefit children with autism. With my limited resources, I was unable to speak with as many families as I would have liked. However, I hope my research will benefit others and bring to light the lived experience of families with autism. We often hear about disorders such as autism in the media and not think much about it. But it truly is a daily struggle and very time consuming to monitor and treat their children with autism. I anticipate presenting my results at the Utah Conference of Undergraduate Research (UCUR), and have applied to the National Conference of Undergraduate Research (NCUR). I am grateful for this opportunity I had to speak with these parents and learn of their experience. I know this will help me in my practice as I graduate and work as a nurse because it will help me to be more empathetic to patients and their families with what they have to deal with physically and emotionally with any type of disorder, but especially autism.
I hope that the day will soon come when we can find a cure for autism. So much research still needs to be done. The more we learn about the disease, the more complex we find it to be. I hope that research will soon yield some promising results which will give these families who deal with autism some hope that they might be able to lead regular lives and receive the blessing of the ability to talk with their autistic family member.