“Sue, come with us please. _____ is asking for something and we don’t know what he’s asking for” she said interrupting morning report. Knowing who she was talking about I knew why she was asking me. A nonverbal autistic man, and I had the most experience, I knew basic sign and had brought in a PECS ( Picture exchange communication system) to help him earlier in his admission (that his group home workers didnt even know how to use and later would take it with them and not return it leaving him unable to communicate once again) and everyone was asking how it worked. I couldn’t help but feel fear as I thought about my three year nonverbal child at home.
I walked into the room to find him in four point restraints and security standing by as the nurse was in the medication room drawing up some sedative to help calm him. I said verbally and in basic baby sign (because I was not sure how much he knew noting he was older in age thus was raised in a time Long before autism had the treatments they have today) “Hi man, what do you want” (signing “you want what” as the exact translation in American Sign Language) he stopped and calmed just looking at me. I tried to think of the most basic of needs and immediately, noting he was of bigger stature said, “you want eat?” While using the sign for eat. At this question his eyes lit up and he said in that familiar autism tone “wa, wa, wa” as he vigorously shook his head.
I looked at security and the other technicians in the room and said “I’ll be right back” and dashed into the units kitchen to see what I could find. I warmed up some Mac and cheese as quickly as I could and juice and a spoon and re-entered the room where security was still standing by and the nurse had re-entered the room. I asked security to release one of his hands so he could eat and security complied still silent and nervous preparing for a possible battle. I understood, this guy was big and even I was mildly unsure about about how this was going to transpire but I also knew that autism is different than other disorders and a fight was unlikely now that his need had been met. He finished the first small plate of Mac and cheese and i said “more” as i signed and he said calmer this time “ya” as he continued eating the last few bites. I ran and got another plate and brought it in I told security that he would be okay now and looked at the nurse still holding the shot in her hand and said, “he wont be needing that shot he just needed to eat”. But the nurse said, “I have to give it to him its already drawn up”. As she gave him the shot to “relax” him I couldn’t question it. I felt a tinge of anger boiling up inside me but then I knew nothing about nursing and meds I didn’t know how all of that worked and I was not going to confront the decision in a patient room (and would never end up doing it all). I stood there while everyone began asking how i knew he was hungry. I just looked at the man in front of me enjoying his Mac and cheese and said, “I got you man. High Five!” And he high fived me back never taking his eyes off the rest of that amazing food in front of him.
Two weeks after this interaction I quit my job on the psychiatric unit. It left a lasting mark on my spirit and I knew I needed a break. I was disheartened and disenchanted to say the least. This was the first time that the reality of my sons disorder (and really all mental disorders) had hit me in a way that it hadn’t before. This was the first time that I realized that in the inpatient setting no one really knows anything about autism. This was the pivotal moment at the beginning of my journey with autism that I realized that really, I was in this alone. This was the genesis of my fears and on this day, I made the promise that no matter how dire the circumstance I would never take him to a hospital. I would never put him in a group home. If there ever came a day that he got violent I would bare it because the results of asking for help would be more painful than a few Bruises. I would not call the police, I would not enter the er. After 13 years on the psych unit now I have seen many physical altercations surely by now I should have the tools to navigate a crisis situation. No one knows my kid better than me… Right?
There is a certain unwavering anxiety that comes over you when you realize that you are not only the front line but you are also your child’s only buffer between the world that loves them and the world of the “system”. I have no adequate words to describe to you the realities of it all. This is the side of the Autism that no one really talks about it because not many know the realities of the system that waits out there for them. I will admit to you that this is one facility and one experience but its real. I understand that every child, ever situation is different but if our clinicians are not educated how can they help our children and our families at a time when we need them to know how to help? This is why I come to you and say “stop hiding your realities. Stop not sharing your pictures of the hard moments. In doing this you are not preparing the world to help you and your child in times of crisis”. It’s great to share the positives and the triumphs. It’s WONDERFUL to see all of our children succeeding but our kids will not always be succeeding. There will be hard moments.
After two years of taking a break from the psychiatric unit I returned with a new set of eyes, an older child still nonverbal and with a lot more experience with the “tough” parts of autism. Since my return 5 years ago, I have seen only one person with autism but as i see the numbers of children increasing year by year I find it increasingly more important to talk about it. To share my experiences with the mental health community, especially the professionals because unless you talk to someone actually living it you cant know what the real struggles are. They can’t know how to help if we don’t equip them… it’s our responsibility as caregivers and advocates to help the system help us. We are a team after all.