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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.

Photo Credit: Eddie~S

Bullying is something that has been around as long as adolescents have been in close proximity to each other.  Whether your children are in large schools or small schools, bullying exists.  With the recent report that ASD children are three times more likely to be bullied than their unaffected siblings, the impact of bullying has taken on a special urgency in my home. (more…)

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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.

Me: Jared, do you like to be hugged?

Jared: I don’t know.  Kind of.

Me: How does the hug make you feel?

Jared: Pretty happy, bye.

Then he hung up on me.  Such is the life of the mother of an autistic child.  It is so hard to get a conversation out of him, much less a phone conversation with its inherent lack of visual cues and persistently following him around the room.  Jared is also a teenager who wants to do his own thing.

The reason I asked Jared these questions is because a new study out of the Yale Child Study Center by Martha Kaiser (no relation) indicates that individuals with autistic traits may not process hugs as socially rewarding.  Specifically, two areas of the brain, the STS (superior temporal sulcus) and the OFC (orbitofrontal cortex), were found not to be stimulated during slow, light brushes with a watercolor brush.

In my own experience with my son Jared, I remember the day he was born when the nurse placed him in my arms.  I tried to initiate breastfeeding but Jared turned away.  I noticed then that whenever I stroked his cheek like the books said to stimulate the nursing instinct in your baby that my son turned the opposite direction.  I thought I was doing it wrong and I visited with several lactation consultants.  Nothing worked and finally my milk dried up at 12 weeks because Jared just didn’t get the sucking down properly.  I even pumped and used a crooked syringe designed to teach babies how to breastfeed, but nothing worked.  I was so immensely disappointed in myself and felt like a failure as a mother.  The unkind comments of disapproving moms at the mall when I pulled out Jared’s formula bottle added to that pain.  It is amazing how cruel people can be when they don’t know the situation.  To this day I feel like crying when I remember one woman saying “you do know that breast is best” as she shook her head at me.

What I came to realize years later is that not only did Jared have difficulty in the muscle movements needed to suck efficiently, he also did not crave that physical touch that my later born children did.  My three younger children would gently caress my arm, neck or chest area as they nursed and they would squeeze me with their other hand.  It was so enjoyable.  They also curled their body around mine as if we were still attached.  The only time Jared did that as a young infant and child was when he was terrified of something.

In fact, to this day Jared only seems to crave physical contact when he is in distress, such as when he has had a “bad moment” at school or the group home where he now lives or when he has been hospitalized for behavioral problems.  It is bittersweet that I can only get that bonding from him when he is in distress but I tell myself at least he needs me.

Recently Jared called me late at night from his group home, crying hysterically.  He had an altercation with another client at the group home, which is about an hour away from our home, and he wanted me to make him feel better.  I spoke to him in soothing tones over the phone, my heart breaking because I was not beside him to comfort him, and he slowly calmed down.  We did a visualization technique I learned from the book “When My Autism Gets Too Big.”  I guided him through deep breaths and encouraged him to close his eyes and rub his upper legs slowly as we both visualized the creek in Vail, Colorado or the beach at Martha’s Vineyard, two of our favorite vacation stays.

Then Jared asked sadly “Who is going to hug me?”  It was a remarkable thing for him to ask.  My heart was so broken by this point, but I said into the phone “I am, right now.  Wrap your arms around yourself and know that it is me.  I am coming through this phone to hug you right now.”

“Can you read me a story?” he then asked.  “Yes,” I said.  Then I recited “Good Night Moon” from memory and my son fell asleep.  Sometimes a virtual hug is all I can give my son, late at night and so far away.  Our journey with autism is not at all an easy one.  I take comfort in the fact that Jared does now ask for the occasional hug and every now and then tells me he loves me, maybe not always with words but actions.

The research may indicate there is no social reward but personally I feel the results of the study indicate a different way of expressing and processing the social reward.  Scientists just haven’t decoded the autistic brain’s response to social stimuli yet.  Different does not mean absent.

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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.

Photo credit: MNicoleM

Is the rise in the rate of autism primarily a result of successful awareness campaigns?

That was my first thought when I read the Centers for Disease Control’s new prevalence report released last week.  With 1 in 88 children now being diagnosed on the autism spectrum, the urgency to find out why there is a 78% increase in the rise of autism diagnoses from 2002 and 23% since 2006, has never been stronger.

But with increased urgency we must avoid haphazard jumps to conclusion.  This is a 55% increase in diagnoses within only 4 years (from 2002-2006), which to my skeptical eye points to better awareness rather than an acute environmental change. However, it is only through a careful sifting of scientific evidence that we can truly surmise the cause(s) of the dramatic increase – a process which takes time. (more…)

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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.

Photo Credit: modernaroid

For years, I’ve known about the groundbreaking research of Dr. Eric Courchesne because I studied his work in college.  When I read his recent article “The Troublesome Bloom of Autism” in Discover Magazine, however, I was astonished.  Courchesne’s latest research found that in the womb during the second trimester, and possibly the third trimester, the brains of children who are later diagnosed with autism are not experiencing the neural paring that those of typically developing children experience.  That is, the autistic brains have more neurons in the prefrontal cortex than those who do not have autism, an average of 67% more.  Specifically, this passage in the article floored me (bold mine):

“During the second trimester of pregnancy, the precursors to neurons in the brain divide furiously. Then they almost all stop, well before birth. When the brain gets bigger after delivery, all that is happening is that the individual neurons are growing and sprouting branches. The only time autistic children can get their extra neurons, in other words, is while they are in the womb. “We established a time zone,” Courchesne says.

That time zone rules out the old bad-mothering theory of autism, and the notion that vaccines trigger autism in toddlers. Courchesne suspects that fetal brains become autistic due to a combination of genetic and environmental influences that strike during the second and possibly third trimesters, just as neurons are dividing. It may be no coincidence that many of the genes thought to increase the risk of autism are also involved in the division of cells.” My son Jared’s development as an infant and toddler matches up with Dr. Courchesne’s findings.  My son had a large head at birth and his doctor was becoming increasingly concerned about his head size and even tested him for hydrocephalus.  His head circumference was literally off the charts and the area around his frontal and temporal lobes was noticeably bulging a bit.  This was in 1997 and the doctor didn’t know what to make of it since my son did not have hydrocephalus.  At the time, we just assumed he was taking after his father’s side of the family because the males are all quite stout, tall and large-boned individuals.

I had a normal pregnancy with my son and was not sick with any viruses.  I did go into labor at 37 weeks, but other than a mild case of jaundice since he was born 3 weeks early; there was nothing unusual about Jared’s birth.  I was only in labor for 3 hours and he came home from the hospital the next day.

I’ve been through the blame game, trying to discern whether or not I ate something harmful or didn’t do something right during my pregnancy.  I’ve tried to cure my son by offering him every therapy known to man, by spending inordinate amounts of time with him and money on him.  Eventually I accepted Jared for who he is, a most loving child with a lot to offer the world.  If and when the world is ready for Jared and his multivaried talents and quirks, I will be able to rest easier at night.  Courchesne’s research is helping with that because it is only through understanding the why and the how that we can begin to understand how to accept and move forward.

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Photo credit: pawpaw67

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.

Over the course of my autistic son Jared’s life, he has gone through sleep difficulties, from the earliest weeks when most babies were sleeping 6 hours in a row, up to the present.  Sure, there have been months, or even a few blessed years, when he has been able to sleep 6 ½-8 hours in a row but more often than not Jared’s sleep has been in bursts of 4-hour cycles.  This has led to him having behavioral problems and to his parents and siblings not getting much rest.

When Jared was a baby, my husband and I were fortunate enough to work in an EEG lab while getting our Psychology degrees at UCLA.  Since my husband is an EEG researcher and with guidance from his university advisors, we decided to record Jared’s EEG at 4 months of age to see if we could find out why our baby wasn’t sleeping.  What we discovered is that our son, at 4 months old, had more brainwave activity as compared to others.  We felt this meant that his brain was more activated, even while sleeping.

A recent study utilizing EEG in infants seems to support our early findings with our own son, although this one focused on attentional differences in social situations as opposed to simple brainwave activity differences while sleeping.

Researchers at Birbeck, University of London placed electrodes on the scalps of 6-10 month-old infants to measure their brainwave activity as they watched faces that either looked at them or away.  Since humans have certain characteristic brainwave patterns during social eye contact the researchers were trying to see if infants who later on are diagnosed with autism show a different brainwave pattern in infancy.  If this is so then the measurements can be used as an earlier indicator of autism or the tendency towards autism and it can give parents a head start on intervention.  Results indicated that as early as 6-10 months infants who go on to develop autism already show different brainwave activity as compared to children who do not.  Specifically, the infants who do develop autism process social information differently.  It is important to note that not all infants who showed this pattern developed autism so the research will need to be expanded.

As I write this post, Jared, now 14, is in the hospital for behavioral problems associated with entering puberty last year.  It has been 3 weeks now and the doctors still cannot find a way to help him sleep through the night, or sleep much at all, as it turns out.  I am hopeful that as research continues there will be applicable treatments so that individuals struggling with autism’s challenges can get relief.  I just wish it were sooner rather than later because I really miss my son.

Source: Birkbeck, University of London (2012, January 26). In the brain, signs of autism as early as 6 months old. ScienceDaily. Retrieved March 13, 2012, from http://www.sciencedaily.com­ /releases/2012/01/120126123703.htm

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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.

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ASF welcomes Jerri Sparks Kaiser as our newest Science Writer. Jerri, a parent of four children, one of whom has autism, will blog 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

A promising new study about blinking rates in autistic children caught my attention this week.  As the mother of an autistic son and three other typically developing children, I can attest to the differences in their social behavior but it had never occurred to me to measure and compare their blinking rates.

The new study, which appears in the Proceedings of the National Academy of Sciences, found that when autistic individuals watch a video of a boy and girl playing they decrease their blinking rate when watching the physical movements whereas typically developing individuals did just the opposite – they decreased their blinking rate while watching the emotional content.  That is, typically developing children are intrigued by emotional interactions (since decreased blinking rate indicates interest) and autistic individuals show interest in the physical interactions.

This makes perfect sense to me.  When my son was an infant I was studying psychology at UCLA and I kept notes of his daily life from conception until he was about 3 ½ years old.

One thing I noted was how when anyone was upset he watched their mouths move instead of their entire face.  He rarely looked at their eyes.  It was as if he couldn’t hear the conversation so he found the silent movements of their mouths humorous.  He would stare intently at people’s mouths and then begin laughing.  Later on he would become excited by this and tip forward on his toes, waving his arms excitedly as he watched.

I remember thinking he might be deaf so I had his hearing checked but it was fine.  In fact, Jared can hear very well, from distant trains to the fluorescent bulbs in the kitchen.  For some reason though he compartmentalizes his sensory input, instead of processing the whole he catches the visual, then the audio.  He would watch sand fall in front of his face and ignore my pleas to come out of the sandbox.  His visual system has always over rode his auditory, so much so that I began covering his eyes if I wanted him to pay attention to what I was saying.

This study could lead to much earlier diagnosis and treatment of autism.  Infants have gaze patterns at birth, an early indicator of bonding.  If it could be found that children as young as 6 months of age demonstrate particular blinking rates or patterns then it could indicate which children are good candidates for early intervention services.  This could improve overall long-term outcomes and gives the term “early intervention” a much more powerful meaning.

My son did not receive services until he was 3 years old because I couldn’t get a diagnosis before that, even though I knew as his mother that something was not right.  There simply weren’t relative tests for any earlier periods of development 14 years ago when my son was born.

I did, however, instinctively model emotional interactions for my son in a heightened way.  Because I knew he acted deaf I often overplayed when I was hurt so as to elicit a nurturing response from him.  When that didn’t work at first I intensified my reactions to when he was hurt.  Eventually it worked and today my son is very empathetic when others are hurt or upset.  He needs to “fix” them.  While it may not be the same kind of empathy as typically developing people exhibit or even feel, his nurturing instinct has been developed and is intact.  The earlier parents know to utilize tools such as this the better the future is for their children.

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