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!