Sleep and Autism: Melatonin Study Adds Options for Sleepless Families

This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

By Jerri Sparks Kaiser

ASD
Photo: jshj

A new study by researchers at Vanderbilt University about giving melatonin to autistic children to help them sleep was published a few weeks ago and it deserves some attention.  Researchers gave 1 mg to 3 mg of melatonin to children with autism ages 3-9 years and noted improved sleep onset.  They are now trying to conduct larger scale studies.

Sleep difficulties have always been a problem for my son Jared.  One of the first things I noticed about his development was that he didn’t sleep very many hours in a row.  In fact, for the first 4 years he only slept 4 ½ hours at a time and after that it was still just 6 hours.  I don’t recall when he finally began sleeping at least 8 hours at a stretch (perhaps it was around age 7) but I know that it didn’t happen without medications prescribed by doctors.  Sleep deprivation was making it difficult for me and my spouse to conduct our daily lives and we resorted to sleeping in shifts. It is estimated that 50-80% of those with ASD are affected by insomnia and that impacts families as well.

I remember sleepily waiting in the elevator at UCLA Medical Center to take Jared to an early pediatrician appointment. He must have been around 10 weeks old.  Beside me in the elevator was another couple with a young infant like my son and we exchanged pleasantries about each baby’s cuteness and then I asked them how they were coping with the lack of sleep.  They smiled at each other and said “She’s already sleeping six hours in a row…”  It was the first of many moments where I sought solace in parents going through the same thing I was going through only to have that hope – that need – dashed.[

Since that time my son has gradually learned to sleep a lot longer, but his sleep is still shallow at times.  The slightest noise can wake him and then he’s up for the day no matter how little sleep he had before he was awakened.  When he is particularly excited about something that’s happening the next day he can’t sleep and will stay awake for 24 hours or more until the anticipated event has occurred.  We are searching for something to help him with this latest symptom, not only for his own health but also for the sake of our family.  Sleep disturbance affects everyone, not just the person experiencing it.  I never thought I’d still be going through sleep deprivation 14 years later.

We did try melatonin for Jared when he was much younger.  I remember it working but as fate would have it, other symptoms, such as running away and behavioral outbursts, took precedence over his sleep supplement and so we had to remove melatonin from his treatment.  The new medications he was placed on took care of his sleep issue until just recently.  This new study makes me wonder if perhaps we could introduce melatonin into his treatment once again and I am going to call his doctor about this.

Recently Jared asked me why he couldn’t sleep.  This is an emerging behavior because Jared is just now beginning to let us into his inner thoughts.  It’s very exciting!  The fact that he’s wondering about his own behaviors is encouraging to me.  I didn’t know what to tell him so I said the only thing a mother can say when she doesn’t have the answer yet: “I don’t know honey, but I’m going to find out and make it all better.”  And I will, someday, somehow.

6 Replies to “Sleep and Autism: Melatonin Study Adds Options for Sleepless Families”

  1. my son nathaniel has been on Melatonin since he was 5 and without it he will not sleep he is now 9 and at 5mg a night without out the meds he would only sleep 2 hrs a night and noone in the house can sleep if he cant so that made for a very tired mommy and his younger sister was so tired but couldnt sleep because he wouldnt let her.

  2. Hi Jerri, my son Cole has been on Risperdal and Tofranil for the last two years. Both aid the depressive emotions and uncontrolled movements, and also sleeping. Dont know if u know these meds, am writing from SA. He has been sleeping fairly well for this period and reacts so far positively. I also notice that if he rides bike outside in the sunlight for at least an hour a day this also helps – perhaps absorbing sunlight?! But I agree with your comment to your son – dont give up!

  3. I’m not familiair with anandamide but will check it out. As for Risperdal, my son was on that for several years and for a long time it was a wonderful medication. It was the first thing we gave him in terms of meds and he responded so positively for so long I honestly thought we’d found “the cure.” A few years into it though and he began massive weight gain and eventually Tardive dyskinesia followed. We managed to stop the tics caused by the TD but ultimately we had to take him off of Risperdal because it stopped working. Now we have him on Seroquel and Clonidine.

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