I'm a parent of an autistic adult. My son, Nathaniel, was diagnosed around 3 years of age (he's now in his 30's), but as I look over some family movies (see March 30, 2011 post) I can see that he displayed many of the 10 signs of autism well before then.

His mother and I had only one thing in mind. What do we do?? In the early 80's there was little we could find about autism (no internet - what a lifesaver now!). We had his immediate needs to worry about. Was there a cure? Did he require medication? Childhood education had not yet come to mind. But with time, we needed to find out what resources were available around us.

Planning usually comes late for parents with autistic kids. We (well his mother and I) worried about his immediate needs and not the future. When Nathaniel reached 18, life as an adult posed many questions.

I hope that this can be a place where parents with autistic adults and children can communicate with those of us who have dealt with autistic adults. Yes, there are books and magazine articles about what to expect, and legal advice, but I have yet to find a place where experienced parents can share these experiences, give advice, and help parents of young children cope with the future of their child.

Oct 12, 2015

Saying Farewell

It is with the utmost sadness that I have to inform anyone who reads my posts, as little as I write them, that my son passed away on August 9th 2015. He was only 37 years old. I am struggling to understand why. Nathaniel was severely autistic, as I have mentioned before. When he was 5-6 he started to develop very disturbing self-injurious behaviors such as pulling his hair out and biting his arm. At one point the local school recommended that he be institutionalized, something that both his mother and I did not want, but we did visit a facility about 45 minutes away from our home. That visit cemented our resolve to do anything to keep Nathaniel out of an institution. Since I am a scientist and worked for the National Institutes of Health, I knew some of the programs that were being conducted at the National Institute of Mental Health. I was able to find a doctor there that was investigating a new drug to control OCD in autistic children. So we signed up. There was a remarkable improvement in Nathaniel's behavior, and it was mentioned both to me and in the research paper that was published that Nathaniel did the best on the drug. Of course, that drug is used frequently now - Anafranil (generic -clomipramine). His quality of life was greatly improved and I would not for a second change my mind on using it. However, I do believe that the drug contributed to my son's death. The official cause of death was accidental water intoxication. This is sometimes seen with athletes who drink gallons of water after strenuous exercise. This of course made absolutely no sense since he is cared for 24 hours a day. His care provider says that Nathaniel had a good Saturday, drank his normal amount of coke, his favorite, said his prayers before going to bed (prayers he learned as a small child and repeats more as a compulsion than anything else since he will not go to bed, ever, without saying them to someone) and went to bed. However, Nathaniel always gets up about 10 minutes after going to bed, goes to the bathroom, slams the door, all very ritually. His care provider, while in bed, realized the he didn't do that, so she got up to check on him. He was unresponsive, lips blue, and lifeless. She got him on the floor, started CPR and called 911. Although she thought that she felt a heart beat, the EMTs were unable to get a response. Only the toxicology showed a case for water intoxication, and I have to say that the limited tox studies seemed to be geared to only confirm the diagnosis. So much more could have been checked. I know without a doubt that Nathaniel didn't drink gallons of water that day, so I looked for any condition that might mimic water intoxication and found one. An extremely rare side effect of the drug he was on can cause a condition known as "Syndrome of Inappropriate Antidiuretic Hormone Secretion" which causes an imbalance in electrolytes in the blood. With low sodium and low potassium, heart failure may ensue. I believe that this is what caused Nathaniel's death. Nathaniel received yearly physicals and yearly EKGs, and it is not likely that this condition would have turned up. Maybe if a blood testing had been performed very recently, a problem might have been seen, but Nathaniel showed no signs of distress at any time, but without any speech, he would not have been able to tell us specifically if he was having any problems. Anafranil gave Nathaniel many good years he would not have had and I do not blame the drug, or myself, for his passing. This of course does not make it any easier to lose my only child. I cry every night and say the prayer that Nathaniel always said to me when we were together. I miss him terribly.


Angel The Alien said...

So sorry for your loss! I haven't read your blog before and I just came across it now on the Autism Blogs Directory, and I wanted to express my sympathy. I wish I knew something better to say.

Dave said...

Angel, thank you for your kind words of sympathy. This is a very painful time for me and Nathaniel's mother.

Lachell Merrell said...

This morning I was looking for some information on adults with autism and came across this blog. I am so sorry to hear of your loss. I wish you peace in the coming months.

M said...

Hi Dave. I too just saw this blog today - months after Nathaniel's passing. I am so sorry that you lost Nathaniel. My adult son (21) sounds very similar to Nathaniel and I too have him at home with me. He has many health problems - mostly connected w/ his CVID. I've completely understand your conclusion that you don't regret giving Nathaniel that medication - quality of life is one thing I too focus on for my son. It is the one thing I wish I could better understand how to give him. I've had to make decisions about medications for my son too and balance the good/bad. While I've often thought that no matter what, I have to outlive my son (like your family, I think an institution is out of the question), my mind then goes to realizing how awful it would be to lose my son and have to go through that grief. At the same time, I worry what would happen to him if I preceded him in death. So I don't know what to hope for. But I do know that it would be a terrible blow to me to lose my son. HOpefully Nathaniel is in a place where his physical body no longer creates obstacles and suffering for him. Best wishes. Maura

Audrey said...

Hi, I am so sorry for your loss. I can't imagine what you are going through right now. My prayers are with you, I am actually a final year at university and I lost my autistic childhood best friend to cancer on May 21st 2015, it's been a few months and I am still struggling to come to terms with losing her, she was 20 years old, didn't make it to her 21st birthday or mine for that matter. Because of it, I decided to create a project this year at university dedicated to technology and autism because of her, there isn't a day that goes by when I don't think about her or miss her. I hope that you are somewhat coping ok. I would love to speak to any parent or carers of autistic adults as I want to learn more from them. I would appreciate if some could fill out a small survey for my project: https://www.surveymonkey.co.uk/r/8VSPJYB I thank every one of you for filling it out.

My prayers are with you!


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