My son is out of the hospital. I cannot express the joy my family felt two days after Christmas when the doctor told us we could finally take him home. It really was a miracle. We had thousands of people praying for him, and we, too, had asked God for his intervention. Imagine our surprise once we heard him speak again for the first time in a month.
I am writing this post with the hope that one day it will help other families with autistic children recognize what an autistic shutdown actually is. Because when it happened to our son, we did not understand it. We thought we had done something wrong and we blamed ourselves. In truth, autistic shutdowns do happen, and they commonly happen to high-functioning autistics, much like it did to my son.
Symptoms of Autistic Shutdown
- Lack of self-care (includes hygiene, food intake and elimination)
- Unresponsive to external stimuli
- Non-communicative (complete mutism)
- Staring at one spot
- Withdrawing from social situations
The way it happened with our son was that one day, early November, he suddenly stopped. He stopped talking. He stopped looking around. He stopped doing anything for himself. He ate, but minimal. He held his elimination process until late at night when everyone had gone to bed. Most of the time, he sat in his bed and stared. If we tried to move him, he would stiffen. If we asked him questions, or talked to him, there would be no response. He seemed to be lost in his thoughts unable to break free from the state he was in.
We initially thought depression was at the center of it all, but other than a few statements he had uttered before his shutdown, we had no other indication that could be the cause. Then we thought he might be experiencing some other form of mental illness. We had gone as far as trying our best to fix it ourselves, like we had done throughout his life. I mean, we are talking about a kid who grew up with many people around, wrote short stories, wrote music, learned how to swim, won a gold medal for Speech Arts at the Royal Conservatory of Music in Toronto, took part in recitals, went to college, and was thinking about getting a job.
So for us, we have never seen this behavior before and that is why we had to get him to the hospital as soon as we could. We wanted to know what was happening to our son.
Once at the hospital, medical doctors ran tests to rule out the most likely causes for his state. Blood and urine tests all came back negative, which was great, but we still did not know what was causing the catatonia and mutism. Doctors ordered a CT scan to detect if there were any anomalies residing in his brain. It came back clean. At that point, doctors sent my son to the mental health unit of the hospital, where he stayed until his discharge.
Metal Health Assessment
Of the half-dozen psychiatrists who saw my son over a one-week period, three had formed opinions. One suspected he was bipolar, which did not make any sense to my wife Luana and I. My son had never shown emotional instability, where his highs were highs and his lows were lows. The second doctor believed my son suffered from depression. Again, we did not see any sign of it, considering months before his shutdown he was smiling and laughing. He would have his off days, but not to the point where every day was darkness to him. We would have known it. We were speaking frequently with him throughout the day. Finally, the third psychiatrist suggested my son was battling schizophrenia, news to which Luana and I felt like a cinder block had struck us in the head. No way was he schizophrenic, we thought. Yet, it was not until several days later that Luana found the symptoms to schizophrenia are much like those of Autism Spectrum Disorder. Nonetheless, the psychiatrist prescribed a treatment of Olanzapine.
My son had never been on any medications throughout any part of his life, no less, anti-psychotics. The first 10mg dosage caused vomiting and diarrhea. The doctor lowered the dosage to 5mg daily. The expected result was that if he suffered from a psychosis (i.e. bipolar disorder, depression or schizophrenia), we would see a big difference with him. It did calm him, where he no longer resisted medical aid, but he had not broken from his catatonic state. That was what we were hoping, and it did not happen.
He was on the medication for three weeks before the attending psychiatrist requested a family meeting with us to discuss next steps. In that meeting the doctor said, the medication was not working and would like us to consider ECT (Electroconvulsive therapy). The only exposure I had with ECT was with the movie One Flew Over the Cuckoo’s Nest, where the nurses used it as a form of punishment for when patients were not cooperating with their treatments. Naturally, I had my reservations. I learned, however, the treatment would work if, again, my son were suffering from a psychosis, from which Luana and I did not believe he suffered. Further to this, as one of the nurses explained to us, it would take a series of six to eight ECT sessions, to start, for the treatment to be effective. Even then, there may be monthly maintenance sessions my son would have to go through after discharge in order to ensure the symptoms of the psychosis do not return. Luana and I left the hospital devastated. For a week, we had no idea what to do.
Our Treatment Plan
Around this time, Luana began reading about Lorazepam, a benzodiazepine meant to treat anxiety disorders. In independent clinical studies, the medication showed a marked improvement in autistic patients suffering from catatonia. The only drawback was that the medication was highly addictive and withdrawal could trigger seizures that could potentially prove dangerous or fatal in some patients. When we discussed this medication with the psychiatrist, we first expressed our concerns with ECT, that we wanted to exhaust the medicinal route first, leaving ECT as the last resort. Next, we worked out a treatment plan, signed a consent form, and requested to have 6mg of Lorazepam administered daily to our son over a 72-hour period.
At the same time, I wrote a personal appeal for prayer to all my friends and relatives on facebook. I felt it important to have as many people praying for our son as possible. I released the news to the public and sure enough, the post went viral, garnering shares from people all over the world. This was all happening the day before my son received his first dose of Lorazepam. Luana and I had shed so many tears over the weeks that the only thing left for us to do was what we were doing the whole time, and that was praying. The verse in the bible that comforted me the most was this one:
“Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much” (James 5:16 KJV).
The afternoon after my son received his first dose of Lorazepam, Luana and I went to visit to see how he was doing. One of the nurses who had cared for him all these weeks stopped us in the hallway. She said that she had never seen him act the way he did before that day. He was smiling, speaking, and playing cards. It was as if something woke him up from whatever state he was in and he was participating in life again. All the nurses were talking about him, too. Because not only had they never had an autistic young man who was catatonic in their ward before, but they also had never seen such a stark change in someone, as it happened with our son.
The psychiatrist quickly called us the next morning wanting to have another family meeting. We were at the hospital within the hour. He asked us what we wanted to do next. This was a couple of days before Christmas. We did not even have to think about it, since we had already discussed it before our meeting. We said that we wanted our son to stay in the hospital a few more days for observation. Luana and I wanted to make sure our son had healed from his catatonic state and he would still be talking once we brought him back home. The doctor agreed, and two days after Christmas, the hospital discharged my son.
My Son Today
Wednesday will be two weeks that my son left the hospital. During this time, we managed to wean him off the medication ourselves by promoting a diet rich in GABA. Now that we have confirmed anxiety was the cause for his autistic shutdown, we are teaching him techniques that allow him to control his mental wellbeing on his own. Deep breathing exercises, resting, reading are de-stressor activities he now enjoys doing. Identifying the cause of the anxiety is still on our list of things to do.
We also found he is not yet ready for crowds or people, at least, for long stretches of time. He does well with short visits, but anything longer than half-an-hour seems to cause him to regress into a protective state of staring and mutism that lasts upward to an hour. Twice this happened with him so far since he has been home.
He is looking after his hygiene, but not without prompting from us. We had to show him how to shower again, brush his teeth and comb his hair. He has yet to allow us to cut his hair or trim his beard, which we believe is a sensitivity issue due to his autism.
We discovered as well that he has a more pronounced desire to maintain a daily routine, something he was lacking last year due to all the changes that took place in the family schedule. For example, he came down to have breakfast yesterday morning without changing out of his PJ’s, because his clothes he needed to change into were not in their usual place.
Overall, the autistic shutdown my son experienced has taught our family some valuable lessons I would like to share with you.
- Our autistic son thrives on predictability and routine. Should anything change, we would have to let him know in advance in order for him to adjust to the change.
- We keep the home quiet of blaring sounds and noise. For me, this was difficult. I am Italian and everything with me being Italian is loud. I have had to usher in a quiet peace in the home, which now is having a wonderful effect on my son. A soothing environment promotes wellbeing.
- Luana is slowly introducing GABA-rich food into our diet. GABA (Gamma-Aminobutyric Acid) is one of the body’s primary neurotransmitters that calm the central nervous system (CNS) of anxiety. Cherry tomatoes are high in GABA.
- Sleep now is a big thing in our family. At about 8:00PM, our family begins to wind down. This process also places our son in a frame of mind of wanting to go to sleep. The more rest he has, the better the next day will be.
- He will have good days and bad days. I have learned this, and there is not a thing I can do about it except accept it.
- Too much external stimulation lowers his ability to cope. I found that like a computer, my son’s brain could only deal with so much before it stops accepting things to process. I have had to learn to do one thing with him at a time. He does not multitask, at least, not for now.
- We ask him one question at a time, as well. We give him ample time to respond, and we do not answer the question for him, unless he has trouble expressing his words.
- We now speak to him with simple language and simple sentence structure. When we add multiple ideas in a sentence, we lose him. Therefore, one idea at a time, in the simplest terms, seems to work with him.
- As parents of an autistic child, we ought to know what his limitations are. Regrettably, our son does not know his own limitations. He may want to push himself beyond what he can handle, or do, and find himself at the edge of another autistic shutdown.
- We have replaced many of my son’s anxiety-driven activities (i.e. video games) with those that enhance a calm state of mind. Family board game nights and card games tend to bring us all together and give us a chance to bond. In the summer, we will be looking forward to a family vacation.
- We learned a lot about people while my son was in the hospital. There are those who placed blame on us for what happened to him. There are those who promised to visit him and did not. There are those who said they visited him and did not. Some people even went out of their way to tell us what was wrong with our family, not realizing their own families may one day have a similar situation happen to them, and they will be looking to us for comfort.
- And there are people we could not live without, who surprised us with their support, who comforted us with their kind words toward our son, who gave of their time to visit him when he was in the worst of conditions, who hugged, consoled and encouraged us when we were in a place we would not want anyone else to be in. To those people, I give you our gratitude and appreciation, for you have brought our family incredible joy we would otherwise not have had, had you not been there for him.
- Most importantly, Luana and I thank God for being there every step of the way. While the storms of trial swirled around us, God was our rock, our fortress and our salvation. He comforted us when we needed comfort, blessed us when we looked for answers, and guided us when everything appeared the darkest. God, through Jesus, gave us the hope we needed to move forward. He was the one who provided us with the strength we so truly searched. He, above all else, showed us the greatest compassion.