Posts Tagged ‘autism siblings’

By Matt Carey

A 2011 study in Pediatrics suggested that autism risk might be higher for siblings born within a few years of an older sibling, with the risk falling as the spacing between pregnancies increased (Closely spaced pregnancies are associated with increased odds of autism in California sibling births). This suggests prenatal environment would be involved in such a risk factor. In a study published on November 30, 2012 in PLoS One, researchers look at the characteristics of autistics born after a first sibling with autism. They look at measures of intelligence (both verbal and nonverbal), repetitive behaviors and social response. In The effects of birth order and birth interval on the phenotypic expression of autism spectrum disorder, researchers found that younger autistic siblings scored lower on these scales than their older autistic siblings. In other words, the challenges associated with autism tend to be higher for autistic younger siblings.

While the sample size for families with three autistic siblings was small, the trend seems to continue with a third sibling.

Here are results for the Ravens Colored Progressive Matrices, a test of nonverbal intelligence:


The fraction of individuals who the researchers deemed “untestable” increased for younger siblings. Where about 20% of first autistic siblings were “untestable”, this increased to about 40% for second and third autistic siblings.


Measures of motor skills (Vineland) were mostly the same for older and younger autistic siblings. Social measures (Social Responsiveness Scale) differed, but only when the age difference was under 2 years.

The authors give some discussion to what factors might be involved in these findings. While they acknowledge that social factors cannot be ruled out, this study, and the pediatrics paper before it, point to the prenatal environment as a possible avenue for environmental risk factor research.

Papers in PLoS are free to the public and this one can be found at The Effects of Birth Order and Birth Interval on the Phenotypic Expression of Autism Spectrum Disorder.

A rise in the prevalence of diagnosed cases of autism spectrum disorder (ASD) has been reported in several studies in recent years. While this rise in ASD prevalence is at least partially related to increased awareness and broadened diagnostic criteria, the role of environmental factors cannot be ruled out, especially considering that the cause of most cases of ASD remains unknown. The study of families with multiple affected children can provide clues about ASD etiology. While the majority of research on ASD multiplex families has focused on identifying genetic anomalies that may underlie the disorder, the study of symptom severity across ASD birth order may provide evidence for environmental factors in ASD. We compared social and cognitive measures of behavior between over 300 first and second affected siblings within multiplex autism families obtained from the Autism Genetic Resource Exchange dataset. Measures included nonverbal IQ assessed with the Ravens Colored Progressive Matrices, verbal IQ assessed with the Peabody Picture Vocabulary Test, and autism severity assessed with the Social Responsiveness Scale (SRS), an instrument established as a quantitative measure of autism. The results indicated that females were more severely impacted by ASD than males, especially first affected siblings. When first and second affected siblings were compared, significant declines in nonverbal and verbal IQ scores were observed. In addition, SRS results demonstrated a significant increase in autism severity between first and second affected siblings consistent with an overall decline in function as indicated by the IQ data. These results remained significant after controlling for the age and sex of the siblings. Surprisingly, the SRS scores were found to only be significant when the age difference between siblings was less than 2 years. These results suggest that some cases of ASD are influenced by a dosage effect involving unknown epigenetic, environmental, and/or immunological factors.

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This is a guest post by Hannah Brown. Her book If I Could Tell You was released today.   I read a lot of autism books and this was a really fun break from the usual scientific tomes and how-to-cope manuals.  It’s a novel about four New York mothers, all very different, whose children are diagnosed with autism.  Suddenly, these women – an ex-model who owns a downtown bar, a high-powered magazine editor, an English professor, and a physical therapist – find that they need each other, as they face the ultimate challenge for any parent. They join together in a support group, and each chapter follows a month in their lives and ends with a meeting.

It’s a rocky road, as they contend with other problems: Quacks peddling expensive alternative therapies; husbands impatient with their children’s disability; other women only too happy to take advantage of the pressures on their marriages; scheming co-workers who try to turn this problem to their advantage; grandparents who are anything but helpful; and resentful teens who run wild while their mothers cope with the crisis. And through it all, these moms support and help each other.

It’s a really fun read.  Enjoy! –Alison

They say write what you know.

So I wrote a novel, “If I Could Tell You,” about mothers raising children with autism.

It probably won’t surprise anyone who knows me that I chose to write this book, since my older son, Danny, was diagnosed with autism (PDD/NOS is his frustratingly vague diagnosis) over 12 years ago, when he was three. And I’ve worked as a journalist for over 25 years. I have also written quite a bit of fiction.

But in the terrifying first weeks and months after he was diagnosed, I was convinced that I would never write again. It’s not that I did anything as grandiose as make a vow to stop writing until Danny was “cured” or “recovered” or however I phrased it to myself back then. I just couldn’t imagine being able to focus on anything but my son.

Fortuitously, I was on maternity leave from my job as a movie critic for the New York Post then. Danny was diagnosed when my younger son, Rafi, was about six weeks old. When the time came to go back to work, I thought of quitting. I just didn’t think I could handle anything outside of caring for an increasingly frenzied and tantrum-prone three-year-old and my newborn baby. (more…)

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By Alison Singer
President, Autism Science Foundation

The week, the British General Medical Council (GMC) ruled that Dr. Andrew Wakefield, who first proposed a link between the MMR vaccine and autism, acted “dishonestly and irresponsibly” when he published his research and showed a ‘callous disregard’ for the suffering of children.

The GMC decision came after the longest and most expensive hearing in its 148-year history.  The hearing focused on a small study of a dozen children by Dr Wakefield and 12 doctors which linked the MMR with autism and bowel problems.  It was published in the Lancet, the highly respected medical journal, in 1998. At a press conference following the publication, Wakefield said there were “sufficient anxieties for a case to be made” to give the three vaccines separately.  Numerous other studies, including one involving three million children, failed to make the link.  But that didn’t prevent MMR vaccination rates from plummeting by 12% in Great Britain after Wakefield’s report. And in 2006 a 13-year-old boy died from measles. More death followed.

Eventually Wakefield’s collaborators withdrew their names from the Lancet paper and the paper itself was eventually retracted. Later it was revealed that Wakefield had received funds from lawyers representing the children enrolled in his study. And now the GMC has spoken in clear and convincing terms. And let’s not forget that the hearing itself was not even about the science; it was about Wakefield’s methods. The science has been in for some time now. No study has shown a link between autism and MMR. To read the studies visit www.autismsciencefoundation.org/autismandvaccines.html

But will this be the end of the controversy. I doubt it.

Once you put an idea in people’s head, even in the presence of clear and convincing science, it is very hard to unscare them.  Anti vaccine autism advocates continue to see Wakefield as a hero who remains willing to take on the establishment and fight for their children.  In the meantime, Wakefield’s actions have had a lasting negative effect on children’s health in that some people are still afraid of immunizations. In some cases, the younger siblings of children with autism are being denied life saving vaccines. This population of baby siblings, already at higher risk for developing autism, is now also being placed at risk for life threatening, vaccine preventable disease, despite mountains of scientific evidence indicating no link between vaccines and autism. This is the Wakefield legacy.

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BoyAlone hc cBy Karl Taro Greenfeld

When I was writing Boy Alone, trying to understand the emotions, jealousies and rage of having a low-functioning autistic brother and figure out how it had dominated my family dynamic when I was a boy and shaped my adult view of the world, I found myself wondering why this hadn’t been my first book. In this age of memoir as a popular form, why had I waited until I was 42, and my fourth book, to begin writing about the person who had the greatest impact on me? The explanation, I realized, was that until I had children of my own, I didn’t understand how abnormal my own sibling relationship had been. My two daughters, Esmee, 9, and Lola, 7, both developing normally, have shown me, in both simple and profound terms, how much I had missed.

They are playmates, allies, enemies, antagonists, advocates and nemeses, sometimes simultaneously. They form their own little sub-state within the larger state of our family, a not-quite autonomous province, at least not yet autonomous, that has its own intrigue and aspiration. When they lack for friends their own age, they make do with each other. They can find inside the family the company of a peer rather than parent, and their lives, I suspect, are that much richer for having that bond and companionship. My wife, one of four siblings in a close family, intuitively understands these ties; I still find them perplexing.

Noah, in many ways, was a brother by blood only. I suspect, and I have no way of confirming this, that if I had vanished from the earth at some point during our childhood, he would have noticed my absence but I don’t think he would have been saddened. Yet if Noah had disappeared—this was a real worry for me; as he grew older my family constantly discussed and worried over when and where he would be institutionalized—then I would have been crushed. This lack of emotional reciprocity never occurred to me until now, and I’m still not sure if my love for Noah is diminished by this or simply numbed.

Yet I didn’t understand, or verbalize, how distorted our sibling relationship was until I had children of my own. Then I saw that Noah had impacted my view of the world in more ways than I had previously acknowledged. When I have written about autism in the past, I sometimes received letters and notes from parents—almost always parents, by the way, rarely siblings—who lecture me for not recognizing the gift that Noah has given me. He is a blessing of some kind, these folks insinuate, and I have stubbornly refused to accept it. I looked for that gift in my own life and see the sacrifices my family made: My parents moved us across country to a better program at UCLA. They opened their own day care center for the developmentally disabled. Our home, as the parents of low functioning autistics can probably envision, was a jumbled-up mess.  We were not a happy family. My father wrote eloquently about us in his own series of books about our family, starting with A Child Called Noah. (Perhaps another reason I didn’t write very much about Noah until now: three books about my brother seemed like enough. Indeed, when I brought a copy of Boy Alone to Noah’s house to give to him, he seemed indifferent; he’s used to being the center of attention.) I wish I could say that Noah’s autism was a gift, but that would be a lie. It was simply a fact of my life that I struggle not to turn away from.

Karl Taro Greenfeld is the author of Boy Alone: A Brother’s Memoir, a wrenching account of growing up with a profoundly autistic younger brother.

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