Autism and its effects on sleep: Part 2

The Bible, continued.

Let’s talk about levels of severity, about the behaviors you dear people might expect from one you love so much.

The DSM (described in the article just previous) has defined three distinct “levels of severity”, an indication of just how much support your loved one, diagnosed in general with ASD, might require.

Three levels apply. As here.

· Level 3: Those kiddos requiring very substantial support of all physical and emotional sorts – the sad, distant, clinical description of these Level 3 children: “severe deficits in verbal and nonverbal communication skills cause severe impairments in functioning, very limited initiation of social interactions and minimal response to social overtures from others.

· Level 2: Youngsters requiring substantial support – these glorious children with marked deficits in verbal and nonverbal social communication skills, with social impairments apparent even with supports in place, with limited initiation of social interactions and reduced or abnormal response to social overtures from others.

· Level 1: Little ones needing but some support. Of all kinds. The bible’s profile then: Without supports in place, deficits in social communication cause noticeable impairments, with difficulty in initiating social interactions. Also, demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to show, to feel, decreased interest in social interactions.

There’s the clinical analysis. Here’s the Hughes Brothers’.

Nothing special to do with us. But we do wonder about the fuzzy edges. About those undiagnosed, undiagnosable blurs of behaviors where ASD slips over into something else.

And who can say, which doctor can diagnose where one human behavior ends and another begins?

Most especially when the youngster – however we shall proclaim her diagnosis – is functioning, is functioning just fine, thank you. We Hughes Brothers mean, “It’s just terminology, folks. Just terminology. Might we please focus on this little human being crying out, right here in front of us all, for some relief?”

But here we go, brothers. Down into the rabbit hole. Down, down we go.


Alright, let’s trot out some more descriptors, some more diagnoses. And we Hughes Brothers present them to you not with any hope of therapy, of happy endings for you and your little child. It seems the medical, the psychiatric community is content with definitions, with no treatment, no response to the evermore closely defined set of behaviors that constitute the problem.

Any answer, medical and counseling professionals? Any hint of an answer here?

As we say, more descriptions of your child’s behavior.

With near as the Hughes Brothers, in our ignorance, can determine, not one bit, not one hint of a cure in sight.

“Cure,” way too strong. “Amelioration,” maybe. “A minute or two of relief” possibly.

We apologize, do John Howard, James, Joel, Curtis, Dave, and good old Mike. For the moment, we’re just reporting. But stay with us. Stay with us, please. We’ll find some answers for you long-suffering families. We will.


· Asperger syndrome: once thought of as the mildest of onsets of ASD. Fine. Kids and their elders with Asperger do not pick up on social cues. They are oh so sensitive to sensory stimuli of every sort – a distant cough, a squirrel there no there running in the treetops, a faint suggestion of coffee brewing. The Aspergers among us focus on a point of interest – calligraphy, stamp-collecting, marksmanship, kayaks – and they function so, so highly and completely in their knowledge of, their interest in, their overweening impulse to discuss calligraphy or stamp-collecting or target shooting or riding down those Class IV rapids in a boat of the child’s own devising.

· Here’s a brand new one, childhood disintegrative disorder, once thought of as the rarest and most savage from of autism. (Before the revision of DSM-5 – See the Hughes Brother’s immediately previous piece.) Suffice it to say that, now these blessed kids with CDD will most certainly manifest seizure disorders. Cold comfort, the Brothers worry, with your beautiful little Junior sitting there in his chair, minding his own business. His limited social, speech, and cognitive abilities.

· And hey, if that sweetheart eating Cheerios in her highchair hasn’t manifested any of the above untoward behaviors . . . well, let’s just call her an unfortunate suffering from pervasive development disorder, not otherwise specified.

The Hughes Brothers stand with the families somehow involved with all of the above. And, as with one voice, we ask.

Give me strength. Lord, give me strength.

Autism and its effects on sleep

Eighty percent of all young people with ASD have difficulty falling and staying asleep.

The Hughes Brothers do not know at first hand of the hurt, the heartache, the stupid worry, the numbed-up exhaustion of persuading, night after night, a beloved little one to . . . please, please, please . . . try to get some sleep. Our brother Mike Hughes knows more than the rest of us combined, and he knows because of his daughters, young women with hearts the size of Kansas who work with families confronting the hourly challenges, the minute-to-minute demands of loving and living with children with autism spectrum disorder.

Mike Hughes, through his knowing daughters, guides our research. He informs our collective opinion.

The rest of the brothers offer you our hearts and our minds and our most sincere, if incomplete, understanding of the difficulties your family must confront as a result of loving a little child with Autism Spectrum Disorder (ASD).

Thank you for your time and your trust. We promise you all the support we can muster. Thank you. Thank you.

Lack of sleep compounds the ASD problem. And so it goes.

A tired little guy to begin with, now even more worn out here at five in the morning . . .

Talk about vicious.

This cycle.

This roundabout whirligig of one trouble after another. No sleep leads to more hyperactivity. Bad sleep means even more inability to concentrate. An endless night of thrashing about, of sleeping at best in fits and starts – it means a morning of aggression, flat-out bad temper from your child, your sibling.

Meanwhile, you’re tired too. Bone tired.

And the loving doesn’t come easy. These chilly mornings before the furnace kicks in, but your child has once again for mighty damn certain started kicking. And kicking. And screaming. And hurting all over the house.

Autism and its effects on sleep: Let’s agree on some medical understanding.

Once more, we Hughes Brothers in no way hold ourselves out among you as medical authorities of any stripe. Nothing could be further from the truth. We’re Kansas guys who have come round to research about autism – more specifically research about products that might help families dealing with ASD – because of some nieces who stole our hearts clean away a long time ago.

So here we go.

We’re reading the bible, the Diagnostic and Statistical Manual of Mental Disorders, in its current edition also known as DSM-5.

Hard going. Really hard going.

But we’re certain of this much:

here come the diagnostic criteria for ASD, group one.

1. Persistent deficits in communication skills, obvious problems in appropriate social interaction in multiple settings – school, for sure, and birthday parties and funerals and airplane flights – who can say when a disruption might occur?

2. An inability to converse, irregular eye movements, nervous tics, a total lack of facial expression, and on. And on.

3. So much difficulty in developing and then maintaining, much less understanding different types of human social relationships.

Group two. Again and again and again.

You know. Oh my Lord, you know. These patterns – these tiresome and oh, so painfully predictable patterns – of behavior. God bless you, and let’s discuss.

1. Muscular movements, bizarre placements of the limbs.

2. Miming. Oh dear, just spot-on repetitions of the speech of her sisters, his teachers, the mailman. It happens, and it’s called echolalia, the clinical term for what you hear day to day.

3. A preoccupation with the most rigid sorts of order, lining up – bless her heart – potato chips in a military straightness.

4. A heartfelt, often vocal adherence to patterns, to the repeated comfort of expectable events hour after hour.

5. Fixation on a somewhere object – a stuffed animal, a television program, an imaginary friend.

6. Super, super sensitivity to some environmental presence: the smell of tacos for supper, a song on the stereo, that cardinal flitting about the birdfeeder in the backyard.

Forgive us. We’re learning as we go.

More to come tomorrow, as the Hughes Brothers think along with you, about how in the world are we going to help this beautiful, this blessed child.

Stay strong and read more Autism support articles here.

Melatonin’s benefits to sound sleep for children with autism confirmed

Good News!

The Journal of the American Academy of Child and Adolescent Psychiatry says so.

A study published by the JAACAP in October, 2017 has confirmed that children with autism spectrum disorder (ASD) with refractory (stubbornly resistant) insomnia will benefit directly from prolonged release melatonin (PEDPRM).

Forgive all the initials. Beneath them lies some genuine hope for families now bedraggled and sometimes grumpy.

The Hughes Brothers will refrain from any commentary hereafter, reporting in its own language the methods and the results of the study.

A rigorous study suggests melatonin’s benefits are real.

The scientists behind this study could not have crossed more t’s, dotted more i’s. Random, placebo-controlled, and double-blind, the trial involved 125 particpants between the ages of 2 and 17.5 (not 18!). Each of these patients suffered insomnia even after behavior intervention had failed to produce results.

Each child was administered 2 mg of PEDPR once daily. The dosage was increased then to 5 mg or the placebo for the last thirteen weeks of the study. These participants included children diagnosed by physicians of ASD; no attention was paid to whether or not these children also may have had attention deficit and hyperactive disorder (ADHD) or other neurogenetic disorders. The one big, the overwhelming, common factor among all the kids: sleep issues, relentless all-night-long sleep issues.

The means of sleep measurement.

Be assured the measurements and their gathering withstood the strongest scientific protocols. These measures called for both the Sleep and Nap Diary (SND) data validated by the caregiver, and the Composite Sleep Disturbance Index (CSDI). These measurements led to totals of sleep times after thirteen weeks of taking the higher dosage of either melatonin or the placebo.

The baseline sleep time – the time measured as both the test and the control groups took the 2 mg of melatonin — was 457.2 minutes for those in the PEDPRM group and 459.9 minutes for those in the placebo group. At the end of the thirteen-week trial, it was observed that the PEDPRM-treated children slept an average of 57.5 minutes longer than those in the placebo group who slept only 9.14 minutes longer.

More good news.

Sleep latency, or sleep onset latency (SOL), the amount of time it takes to fall asleep, was observed to have decreased by 39.6 minutes on average for those with the PEDPRM treatment, while it was only 12.5 minutes for those under the placebo treatment. Sleep latency was not linked to any earlier wake-up time. It was evident that the rate attaining a more beneficial response towards sleep latency was higher among those under the PEDPRM group than the placebo group. Sleep disturbance was also observed to have declined among the PEDPRM group members.

Based on previous studies conducted on the effects of supplemental melatonin, it has a favorable profile as regards to side effects and its low cost. The majority of parents who have children with ASD find melatonin a beneficial alternative to FDA-approved medications.

Sleep problems among children with ASD

Many children – for all sorts of childly reasons – experience difficulty falling asleep and staying asleep, but such problems are more prevalent among young people diagnosed with ASD and Asperger’s syndrome. Children with ASD, as their families well know, often wake up way, way too early.

Children with ASD do not sleep well for any of way, way too many reasons. These children respond with maximized sensitivity to stimuli of every sort, sensitivity which can so easily interfere with falling asleep easily, with sleeping without disruption throughout the night. These youngsters require routine. They demand controlled conditions. They struggle with any changes in their environment.

Take heart, parents and siblings.

If you’re not already using melatonin as part of your child’s bedtime regimen, this recent study suggests you might want to give this amazing hormone – a happy product of the brain’s pineal gland – an overnight try.

The Hughes Brothers do so hope and pray it might work for you and your family.

Sleep and children with autism, a primer.

Sleep disturbances affect at least half of all children with autism. Parents and siblings of sleep-deprived autistic children can recite horror stories of familial fatigue, stress, and anxiety surrounding their attempts to bring some sense of normalcy to bedtime. The potential reasons are varied and difficult to pinpoint, the reasons why falling asleep and staying asleep is so very difficult in kids with autism.

Some potential causes of sleep problems with autism.

Some potential villains in sleep deprivation among the pediatric population.

Malfunctions in the body’s biological clock, often referred to as the circadian rhythm Problems with production of and metabolism of the melatonin, the hormone involved in control of the sleep-wake cycle Side effects of medication Over-stimulation at bedtime Medical disorders, a whole big bunch of them, ranging from anxiety and restless-leg syndrome to epilepsy and stomach problems

Autistic children have difficulties with breathing

Breathing as much as any other cause, we learn.

Researchers have known for several years that children with autism suffer in untoward numbers from apnea, that formidable opponent to good sleep found so often in older adults, men in particular. So the incidence of apnea in autistic children came as something of a surprise.

With apnea, breathing stops for seconds at a time, over and over again throughout the night. Each stoppage triggers an unconscious micro-arousal as the poor child briefly gasps awake. These breathing disruptions can result from a physical blockage of the upper airway by soft tissues, such as the tonsils and adenoids, or from some blip in the brain.

The good news here: surgical removal of the tonsils and/or adenoids can lead to immediate, dramatic improvements in the sleep cycle.

REM and children with autism.

Even after the research involving apnea have come new findings, very interesting new findings that suggest children with autism may have far less rapid-eye movement (REM) sleep. This reduction in REM sleep raises concerns about these children’s cognitive function during the day. Memory and learning depend, in significant part, on appropriate amounts of REM sleep. The dreams which occur most often during REM have much to say about the child’s emotional well-being, and any deprivation thereto will necessarily bring along any number of adverse daytime effects.
Autism and the inability to fall asleep, continued.

All the potential problems which trouble all children seem to exaggerate themselves, to accelerate the ill effects in young people confronting autism. Simple anxiety, for instance — worries about school or about friends — can amplify themselves in the waking nightmares of autistic kids. Any sort of neurobiological dysfunction can wreak bedtime havoc as well.

Polysomnography, a perfect starting place.

A laboratory procedure called polysomnography is the current preferred method of analyzing sleep in all its slumbering complexity. The technique records electrical symbols in the brain throughout the night, watching and listening as the child cycles through the different phases of sleep from evening’s beginning to morning’s end. Polysomnography detects any abnormalities in the architecture of sleep, the expected patterns of slumber throughout the night.

Please look for polysomnography in your home.

Few, if any, children with autism would be able to tolerate the regimen of this procedure, were it to be conducted in a sleep laboratory. Too many wires. To many unfamiliar people. In a strange environment. Too many tactile incomings. Too much sensory input all around.

A desensitization period, a timeframe ranging from a week to perhaps as long as two months, might be necessary before your child will become comfortable with the testing process.

Once more, the Hughes Brothers offer you heartfelt, deeply personal

Mike Hughes’ daughters, favorite nieces all around, work daily with children with autism. And we look forward to helping them, and you, find the sleep aids that will bring soonest, best rest to your entire household.

Thank you for your confidence in our work.