B.L. is 25 years old, and has lived a life characterized by very high anxiety, frequent meltdowns—often with aggression, and highly oppositional behavior.
He has been irritable, impatient and demanding, refusing to comply with rules and insubordinate of authority. He has always been very egocentric and seemed incapable of considering the needs of others. He can perseverate on something he wants and be unable to let go, regardless of how unreasonable the demand.
B.L. has had night terrors from infancy, and frequently complains of sleep paralysis. His sleep was always disordered. He had difficulty settling and falling asleep as a child, and with adolescence began having hypersomnia that interfered with school. By late adolescence B.L. was sleeping 16-20 hrs/day. He has had periods of both auditory and visual hallucinations.
As a young adult, B.L. began having periods of depression, alternating with periods of giddy, silly, elevated mood. Occasionally, after periods of extended stimulation, B.L. would become manic.
B.L. has always tended to overheat. When he was a child, we called him “Lava Man”. He ate popsicles at night to go to sleep and always slept with a fan blowing on his head. When he was older, he kept his apartment around 55 degrees in the winter and kept the air conditioning set as high as possible in the summer.
And B.L. has always craved carbohydrates. As a child, the only behavioral reinforcer that worked was the promise of french fries. For much of his childhood, B.L.’s diet consisted of macaroni and cheese, chicken nuggets and french fries, and eventually pizza (without sauce).
B.L. has been an enormous parenting challenge. By the time he was 16, his behaviors and aggression had become unmanageable at home and we had no choice but to place him in residential treatment. The separation was traumatic for both B.L. and us, and B.L.’s noncompliant behaviors continued through three failed placements. Eventually we were able to move him into his own apartment near us, and for the past five years he has been able to manage with support through a local community mental health agency.
In his first 25 years, B.L. received 13 different DSM IV diagnoses. No one who treated him had ever seen anything like him before. He was medicated with antipsychotics, anxiolytics, stimulants and antidepressants. By age 25 B.L. was socially isolated, slept most of the day, was terrorized by his dreams and cursed his life.
A year ago I heard the story about Dr. Papolos’s work on NPR and was stunned to learn that there were other individuals with symptoms identical to B.L.’s. Through extreme good fortune, I was able to contact Dr. Papolos, who evaluated B.L., and in February, 2014 started him on a ketamine trial.
B.L.’s symptoms gradually began to improve as we slowly increased his ketamine dose. Two months after beginning the trial, there was a noticeable change in B.L.’s affect and demeanor.
B.L. now seems more mature. There’s very little of the juvenile, silly, niggling annoying behavior—poking, name-calling, repetitive gags, etc. He still likes to laugh, and make other people laugh, but the jokes are appropriate, and he can laugh at himself. He is almost always compliant (!) and does “favors”—will go get me something I need, or take something to the trash. He’s helped me with tasks around the house and yard and is clearly proud of himself. He’s discovering the pleasures and satisfaction of giving for the first time in his life. If B.L. needs help, he asks politely, and thanks me for the help. He apologizes if he makes a mess, instead of blaming me for everything. These are little things that have NEVER happened before. They happen naturally and without comment, as though nothing has changed, but in fact it’s a sea change in attitude, affect and demeanor.
Recently, after receiving ketamine, B.L. was very open and expansive. He began talking about how much he appreciated me and his father and what good parents we had been for him. He talked touchingly about each of us individually, and the qualities we had given him. He was speaking beautifully and poetically, so I began to take notes:
B.L. said that he felt like he could see clearly—with the eye of heart and soul. He felt like he could see the enlightened view and that he was not limited by his own petty actions. He felt like he had the ability to transcend who he was and become who he was meant to be. He said that this new feeling frightened the “old me,” which was why he had sometimes resisted taking the ketamine. He said he had an awakened feeling, like a sleeper who had awakened and was in full possession of his senses. He felt more fully alive—more of a person and less of a machine going through the motions. He said he had been literally dead inside—his heart and brain, long inside a cyborg, had started to beat again.
April 21, 2014
Very interesting. Sounds very much like my 8-year-old daughter, who also has autism. I was especially interested in the issue of heat tolerance. My child gets heat rash, which leads to pustules, which can turn into boils. Whenever she has bumps on her bottom due to heat rash, she also has very red cheeks and what looks like beginning acne. When cheeks are red and bottom is bumpy, activity levels are also sky-high.
In the summer time, to get my child to sleep, I have to reduce her body temperature and then make sure she stays cool throughout the night. She must have the fan on in her room at night, too.