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.
Maybe I am just confused, but what does this new study have to do with autism? As far as I can tell from the abstract of the study, none of the participants actually had any form of autism.
There is a large difference between “autistic traits” in a otherwise healthy individual and an individual who has enough impairments to actually meets the diagnostic criteria for autism. If you squint and look hard enough at anybody you can see “traits” of autism.
So, when the abstract of the study talks about “individuals social abilities” and “autistic traits”, what is being referred to if it isn’t autism? How were “social abilities” and “autistic traits” quantified in the study and what is the relationship between these traits and autism?
Thanks.
Hi MJ, Great questions. The link to the abstract of the original study is here: http://www.ncbi.nlm.nih.gov/pubmed/22267520 . I can’t get the original full text yet as it is not available online without a subscription yet. As for your question about none of the participants having autism, based on the study’s abstract there is a preponderance of symptoms on a scale and those with the most autistic traits were differentiated from those with less. Those with the most traits showed lowered response to stimuli in certain brain areas. All research needs to be replicated in future studies to verify its validity and to withdraw conclusions but I think since autism is a spectrum disorder that the validity of the study is somewhat compelling, although not definitive. In science sometimes models have to be used when obtaining data, especially in early studies. I’m hopeful in the future a study of this nature can be replicated using participants with actual diagnoses. They did use an fMRI to assess the traits and a scale was used to measure gradations.
Well, I got a copy of the study text because I was curious. So, to answer my own question, the metric used for “autistic traits” was the Autism Quotient. I haven’t read the entire paper yet but it really looks like the autism angle in this paper is really just a red herring.
The participants are mostly females (12 of 19), none of them had any known neuropsychological disorders, and – most importantly – none of them had any family members with any form of autism.
That last bit pretty much makes the entire “autistic traits” angle worthless. You might be able to relate traits of autism with actual autism if there were a family history of autism as the entire traits theory rests on the fact that unaffected people might have traits in common with other family members who actually have autism.
But neither the participants nor their family members had autism and I don’t think that a “trait” of autism would have any significant meaning in that context. The behaviors and traits of autism are nothing more than extreme ends of what a “normal” behavior or trait would be. Everyone is going to have something that you could consider a “trait” of autism. It is only when there are enough of these traits that you start having problems.
The entire point of the “autistic traits” theory is that a person has more of the traits of autism that a typical person would but not enough to qualify for a diagnosis of autism. In that case, the “traits” might be something significant and you might be able to relate these traits to actual autism.
But, when you look at the actual AQ scores from the paper, that clearly isn’t the case. None of the scores was close to the accepted cut-off of 32 at which there *might* be some significant traits of autism.
Although, as an aside, even at scores above 32 the AQ is pretty poor at detecting autism and can’t reliably distinguish between autism and other conditions such as schizophrenia.
The AQ scores in the paper had a mean of 13.65, a std deviation of 6.11, and the range was 6 to 27. So, the majority of the scores were extremely low and were clustered down around 13.
In other words, almost every score was solidly in the “normal” range of behaviors. So not only didn’t the participants have autism but also they didn’t have any significant levels of autistic traits.
Then again, the AQ is not meant to be a measure of autistic traits; it is meant to be a screening test for autism. Even at scores above the cut-off you can’t really say that one person has more traits of autism simply because they have a higher score than someone else. The test simply isn’t designed or validated for that.
So, what does it really mean for people with autism when a bunch of pretty much normal people without any family history of autism show a correlation with a score that doesn’t represent anything significant about autism?
Hi MJ;
You bring up a subject that raises an important question. Just how common are ‘autistic-like’ traits in the general population? The question of how do you define ‘autistic-like’ traits and what is the general population rate for ‘autistic-like’ traits has its origins with Kanner in his 1943 paper ‘Autistic disturbances of affective contact’. In that paper he described the parents as cool and aloof and obsessively interested in areas of a scientific, artistic or literary nature. These traits that cluster within families have become known by various labels including the broader autism phenotype, autistic-like traits and sub-threshold autistic-like traits.
DSM-IV (1994) and the Gold Standard diagnostic tools (ADOS, ARI-R) are all derived from DSM-IV (1994) diagnostic criteria. The most severe category, Autistic Disorder, in DSM-IV (1994) consists of a checklist of sixteen isolated symptoms, none of which are specific to autism suggesting substantial ambiguity in autism definition.
One clue as to the population prevalence rates for the broader autism phenotype may have come from a study that included 5,877 participants and reported that 26% of women and 19% of men described themselves as being ‘very shy’ in childhood.
http://www.ncbi.nlm.nih.gov/pubmed/15967173
Robert Plomin’s group in the UK which include many names familiar to us parents including Angelica Ronald, Francesca Happe and Simon Baron-Cohen have been recruiting thousands of twin pairs registered in the Twins Early Development Study (TEDS) and applying screening tools for autism such as the Childhood Autism Spectrum Test (CAST) and Baron-Cohen’s Autism Spectrum Questionnaire (ASQ) to thousands of twin pairs. This group has reported that “Around 10% of all children showed only social impairment, only communicative difficulties or only rigid and repetitive interests and behavior, and these problems appeared to be at a level of severity comparable to that found in children with diagnosed ASD in our sample”. (Ronald et al 2006).
The population prevalence of ‘autistic-like’ traits are far too commonplace to consider ‘autistic-like’ traits as a causative mechanism although it is likely to be a contributory factor. There is another huge logical problem, the parents don’t have autism, the implication being what distinguishes affected from non-affective family members are other unrecognized contributing or causal mechanisms
Reference
Ronald A, Happe F, Bolton P, Butcher LM, Price TS et al. Time to give up on a single explanation for autism. J Am Acad Child Adolesc Psychiatry. 2006 Jun;45(6):691-9.