Antipsychotics, my brother's foot fractures and neglect at his NY residence, part two

A few weeks ago, I wrote about my brother Stuart who fell at his residence and now has multiple foot fractures and that his residence did not notify my mother or myself, his legal guardians, and waiting two days to obtain medical attention. I also wrote about how he was on multiple antipsychotics over the years which can weaken bones.

Last week, both my daughters and I went to visit Stuart at his OPWDD funded agency residence. Stuart was sitting in a wheelchair, and he looked so old. I could not help but reflect how all those psychiatric medications for so many years took a large toll on his body. He had a bone mineral density scan, which as I suspected, showed he had weak bones, and this is despite that he always had lots of dairy in his diet. I know the weak bones are from all those years of antipsychotics. Most antipsychotics can weaken bones. He now spends his day on the computer watching YouTube. In the living room, there is a post on the wall with all the individuals who live in the residence and the goals they made for themselves. Stuart's section on goals was empty. The staff informed me he wanted no part in it. I offered to take him out to lunch, thinking I would push the wheelchair while my older daughter would hold the leash of the service dog for my younger daughter, Talia, who like my identical brothers, also has autism. Stuart did not want to go out to lunch, but stated he wanted to have his cheese sandwich at his residence instead. My older daughter wanted to buy Stuart a subway book, but he said he can only look at books when he is in my mother's car going to visit his twin Matthew at Judge Rotenberg Center in Massachusetts. He finally agreed he would keep a book on bridges at his residence, any my daughter bought one for him immediately. While Stuart sat in the wheelchair, Talia watered the plants and fed the fish. The staff told me that Stuart has never watered the plants or fed the fish.

I could not help but think that even though Talia is almost nonverbal and her IQ is about 20 points lower than Stuart's, that she functions so much better than him, that she is productive, that she was much more quality of life. She is so much happier. It is the ABA that Talia has, why Talia can do farm work as part of her school program at Elija, the ABA that my brother Matthew has at JRC, why Matthew can hold a paid job, that makes them function so well and have such a good quality of life, and not require psychiatric medication. It is the ABA which keeps them healthy. ABA is a public health issue.

Autism, Suicide Attempts and Exercise

Having an autism spectrum disorder is an independent risk factor for a suicide attempt according to a recent study, (Mu-Hong Chen, Tai-Long Pan, Wen-Hsuan Lan, Ju-Wei Hsu, Kai-Lin Huang, Tung-Ping Su, Cheng-Ta Li, et al., "Risk of Suicide Attempts Among Adolescents and Young Adults With Autism Spectrum Disorder: A Nationwide Longitudinal Follow-Up Study," Journal of Clinical Psychiatry (August 2017): epub ahead of print, doi:10.4088/JCP.16m11100). The study followed 5,618 adolescents ages 12 and up and young adults up to age 29. The risk for a suicide attempt for individuals with autism was 3.9% vs. 0.7 percent with follow up periods between two and ten years.

Risk factors for suicide include anxiety and depression. A literature analysis of 16 articles including 922 participants shows an improvement in anxiety symptoms not only in healthy individuals, but also individuals with physical or mental illness, Brett R. Gordon, Cillian P. McDowell, Mark Lyons, and Matthew P. Herring, "The Effects of Resistance Exercise Training on Anxiety: A Meta-Analysis and Meta-Regression Analysis of Randomized Controlled Trials," Sports Medicine (August 2017): epub ahead of print, doi:10.1007/s40279-017-0769-0). Furthermore, another study following 33,908 adults showed that exercising at least one hour per week could have prevented 12% future cases of depression, assuming the relationship is causal, (Samuel B. Harvey, Simon Overland, Stephani L. Hatch, Simon Wessely, Arnstein Mykletun, and Matthew Hotopf, "Exercise and the Prevention of Depression: Results of the HUNT Cohort Study," American Journal of Psychiatry, (October 2017): epub ahead of print, doi:10.1176/appi.ajp.2017.16111223).

Despite the mental health, cognitive and physical benefits of exercise, students often do not have physical therapy on their Individualized Education Programs, schools do not provide recess, and adults with developmental disabilities at day programs and residences are not exercising. We need applied behavior analysis programs to give individuals with developmental disabilities motivation to engage in physical activity. However, most programs for autism and other developmental disabilities lack adequate applied behavior analysis programs, even though it would have such a public health benefit.

Antipsychotics, my brother's foot fractures and neglect at his NY residence

Two weeks ago, on Friday night, while going to the bathroom, my brother Stuart fell and broke bones in his foot. Unlike his identical twin at JRC who has been off medication for 28 years and has a paid job, Stuart has taken numerous antipsychotic medications over the years which can weaken bones. Furthermore, due to a lack of an effective behavior plan my brother sometimes kicks the wall which also may have damaged his bones.

After he fell, he refused to go to the hospital. Despite the fact he has autism, intellectual disability and has been declared incompetent by a judge, the staff at the residence honored his decision not to receive any medical attention. The residence never notified my mother nor myself despite we are his legal guardians.

Two days later in the afternoon, my mother called to speak with him. My mother was told he was not available because he was at the doctor's office. We have now been informed that Stuart is likely to have arthritis for life, might require surgery later on, and also might be crippled for life. He is only 45 years old. Sadly, he is at what is considered one of the best agencies in NY, having received the designation as a "Compass Agency," by New York State, for its reportedly excellent service, https://opwdd.ny.gov/opwdd_services_supports/service_providers/compass_initiative/compass/agencies.

Last Sunday, I completed my fifth marathon and now I am thinking my brother will probably never be able to run again at all. New York State considers taking away preferred items as a consequence even for dangerous behaviors, even though it may stop the behavior from reoccurring and therefore not require medications. However, the true human rights abuse is giving medications with toxic side effects as a replacement for effective behavior plans.

Study Examining "Mortality and Myocardial Effects of Antidepressants"

In a research study examining seventeen prior studies, (Marta M. Maslej, Benjamin M. Bolker, Marley J. Russell, Keifer Eaton, Zachary Durisko, Steven D. Hollon, G. Marie Swanson, et al., "The Mortality and Myocardial Effects of Antidepressants are Moderated by Preexisting cardiovascular Disease: A Meta-Analysis," Psychotherapy and Psychosomatics 86, no. 5 (2017): 268-282, doi:10.1159/000477940), antidperessants showed increased mortality and new cardiovascular events in the general population. In individuals with cardiovascular disease, there was no significant increase in risk. Most antidepressants affect serotonin transmission, a chemical in the brain which is important in mood regulation. However, serotonin affects other parts of the body as well and may pose risk. In this study, in the general population, risk of death increased by 33% compared to people not taking antidepressants. Antidepressants also have blood thinning effects which may be theraputic in individuals with preexisting heart disease and may explain why there was no increased mortality risk in this population. Furthermore, in some individuals antidepressants save lives, but too often other effective therapies are not available that can treat anxiety and depression, such as cognitive behavior therapy, and antidepressants are sometimes used in individuals with autism, despite poor evidence, to treat conditions such as anxiety and compulsive behaviors, because individuals can not access other safer and effective treatments due to lack of funding.

Side Effects: My Brother at a Roadside ER

Exactly two weeks ago, when my mother, who is now 77 years old, was taking my brother Stuart, who has autism, back to New York from visiting his identical twin Matthew, who also has autism, and resides at the Judge Rotenberg Center in Massachusetts, Stuart would not stop coughing and was having problems breathing enough air. On some of these trips, Stuart has become agitated and attacked my mother, despite being on up to twenty medications, mostly for behaviors or to manage side effects. More than once, I have expressed concern to my mother about her and my brother's safety on these trips, but she feels my brothers need to spend some time together, so she takes this risk. Unlike Stuart, Matthew is on no medications and has a job. Furthermore, he loves the JRC so much, he refuses to come to New York for any visits, and insists the family come to him.

Coming home from this particular trip, my mother knew she had to bring my brother to an emergency room in Connecticut. He had a gastrointestinal obstruction, a side effect of his antipsychotic medications, and needed a nasogastric tube. My mother was also told if this did not improve, Stuart may need surgery. It was hard for me to hear the doctor on the phone as Stuart was screaming in pain and fear. Thank goodness he improved and was able to go home.

While New York placements offer almost no ABA, and response cost procedures (consequences for problem behaviors such as removing preferred items) is considered by New York Office for People with Developmental Disabilities (OPWDD) a human rights violation, we give the individuals medications, individuals who are more sensitive to life-threatening side effects, to manage their behaviors, which is the real threat to their life. We must change this!