Supporting Sibs: Meeting the Needs of Siblings

Hosted by Montana Family to Family HIC

Four Free Online Sessions:
November 8--Supporting Sibs for Parents and Caregivers
REGISTRATION LINK [msubillings.us5.list-manage.com]

November 15--Super-Awesome SibShop
REGISTRATION LINK [msubillings.us5.list-manage.com]

November 22--Teen Talk SibShop
REGISTRATION LINK [msubillings.us5.list-manage.com]

December 6--Sib Panel: Listening to and Learning from Our Sibs
REGISTRATION LINK [msubillings.us5.list-manage.com]

All workshops are from 7:00 to 8:00PM
FLYER LINK [msubillings.us5.list-manage.com]

Abbey Guza (LCSW, MSW) is a certified SibShop facilitator who has worked with individuals with disabilities and their families for sixteen years. Abbey has a passion for ensuring siblings grow up with a community of support.

For more information contact Shawna Hanson at 406-243-4531 or email at Shawna.Hanson@mso.umt.edu.

Doug - We also have Sibling resources on this blog. This is one of my favorites in discussing siblings as adults. 

Read the issue here. 

Severity of autism symptoms varies greatly among identical twins

Identical twins with autism spectrum disorder (ASD) often experience large differences in symptom severity even though they share the same DNA, according to an analysis funded by the National Institutes of Health.

The researchers determined a 96% chance that if one twin has ASD, the other has it, too. However, symptom scores varied greatly between twins diagnosed with ASD. The researchers estimated that genetic factors contributed to only 9% of the cause of trait variation among these twins. In contrast, among pairs of identical twins without ASD, the scores for traits were very similar.

Read more here.

Siblings of children with autism have social, emotional problems

Even typical siblings of children with autism tend to struggle with anxiety, depression and social difficulties, according to a large new analysis1.

The findings provide the most robust evidence to date that these siblings have problems, too, says lead author Carolyn Shivers, assistant professor of human development at Virginia Polytechnic Institute and State University. “We’ve found evidence now from nearly 70 studies that says there is actually something going on there.”

The findings jibe with the ‘broad autism phenotype’ theory, which posits that family members of autistic children share some traits of the condition.

However, it does not reveal how much of the siblings’ difficulties are dictated by genetics rather than family environment, says William Mandy, senior lecturer in clinical, education and health psychology at University College London, who was not involved in the study.

Read more here at Spectrum. 

Siblings Could Shed Light on Roots of Autism

When Erin Lopes’ son Tommy was 15 months old, she became alarmed when he stopped saying “yes” and “no” and holding her gaze. It wouldn’t be until he was three years old that Tommy was finally diagnosed with autism.

Tommy had two first cousins on the autism spectrum, so Lopes suspected it ran in families. So she was relieved when her daughter Evee Bak, who was born 17 months after Tommy, was talking in full sentences by her second birthday. The toddler appeared to not be on the autism spectrum—what autism advocates today call “neurotypical.”

Erin’s children exemplify a question that’s mystified scientists for decades: Given that autism, a developmental disorder that impairs a person’s ability to communicate and interact, is inherited in most cases, why do girls get it at much lower rates than boys? According to a 2011 study by an international team of psychiatrists and pediatricians, nearly one-fourth of brothers of autistic children were likely to be on the spectrum, but that rate dropped to 9 percent for sisters.

Scientists have historically focused on studying a “quartet” of two biological parents and two autistic children. Yet more recent research calls for learning more about the unaffected siblings – particularly girls. And in an era where researchers can map the human genome en masse—and have identified 100 genetic regions believed to be linked to autism—there is a need for lots of DNA data from autistic and neurotypical siblings alike.

Read more here at Smithsonian Magazine. 

Downloadable Toolkits from National Autism Association’s Autism ATRIUM program

View the 16 Toolkits here. 

ASD & Siblings Toolkit

NAA's ASD & Siblings toolkit is a guide created to help parents understand and address feelings and challenges often experienced by children who have a brother or sister with autism.This item is provided by NAA at no charge. When you complete the order process, you will receive a link to download the booklet in PDF format. The link will expire in 72 hours.
Go here to download the toolkit. 

Sibling study bolsters role of common variants in autism

Children with autism, as a group, are genetically more similar to one another than to a group of their unaffected siblings, a new study suggests¹. The findings support the notion that people with the condition share common inherited variants that boost autism risk.

Studies comparing people who have autism with unrelated controls suggest common variants can contribute as much as 49 percent to autism risk. But ethnic differences between the two groups in previous studies may have skewed this estimate too high, says Michael Wigler, professor at Cold Spring Harbor Laboratory in New York.

In the new study, Wigler and his team compared people with autism with their unaffected siblings, who have similar genetic backgrounds. They found strong evidence that variants of small effect that are passed down for generations contribute to autism risk, Wigler says. “It was significant at a very substantial level,” he says.

The study does not provide an estimate of how much common variants contribute to autism risk. But it adds to mounting evidence that these variants play an important role, says David Goldstein, director of the Institute for Genomic Medicine at Columbia University in New York, who was not involved in the study.

Read more here at Spectrum.

The Other Sister

As many as 700,000 adults in the U.S. with a disability like autism live with parents or another family member who’s at least 60 years old. What happens when those caregivers are gone? One sibling confronts her past and likely future.

Ellie was seven when she asked for a rat. We were strapped into our bucket seats in the minivan as our mother ferried us somewhere that is now lost to history. “Not while I’m alive,” my mom said over her shoulder, cranking the wheel as she turned down another street.

My sister sat quietly for a few seconds, absorbing the rebuff. Then she turned to me and smiled, two buckteeth pushing over her bottom lip.

“Ciara,” she said. “When mom dies, we get a rat.”

Eight years ago, after Ellie—not her real name—turned 18, becoming an adult in the eyes of the law, a piece of paper was filed at a King County Courthouse formalizing a decision that was reached without much discussion, drama, or fanfare. If my mother died, one of her sisters would become Ellie’s guardian until I turned 30, at which point I would take over. 

Ellie still sleeps in her childhood bedroom and our mom still drives her around Bellevue, where we grew up. She schedules Ellie’s doctor appointments and manages her money. She trims her toenails. Ellie doesn’t want a rat anymore but when our mom dies, she’ll get me. 

I turned 30 this summer.

Read more here. 

5 Ways to Be a Supportive Sibling to Someone On the Autism Spectrum

I come from a very close-knit family. My parents have been married for over 30 years, and I have two wonderful brothers. Fifteen years ago, when my youngest brother Joe was just 7 years old, we found out he has Asperger’s syndrome. At the time, there was not much research about it; my family treated Joe like everyone else.

Being an older sister has its perks, but when you are dealing with someone on the autism spectrum, there are things to consider.

1. Be careful how you tease. If you are an older sibling, you will inevitably find ways to torment your younger brothers and sisters. But, if one of them happens to have Asperger’s, they may not get over the torments so easily, and likely will not understand sarcasm.

2. Realize you may never win a debate. My brother is very headstrong and insists that Donovan McNabb should have never left the Philadelphia Eagles. He has statistics to prove it. I do not. I can just argue. He can back up his arguments about everything from sports to politicians with facts and figures.

Read more here.

Study: Younger Siblings Face Higher Autism Risk

Younger siblings of those with autism are over a dozen times more likely than other kids to have the developmental disorder too, a new study suggests.

The risk did not appear to be affected by a child’s race or whether they were born early, at term or late. However, gender did seem to make a difference, according to findings published online this month in the Journal of Developmental & Behavioral Pediatrics.

Among kids with an older sibling on the spectrum, 11.3 percent were ultimately diagnosed with autism as well. By comparison, just 0.92 percent of other children were found to have the developmental disorder.

The risk was higher for boys with older brothers with autism — 15 percent — compared to girls with affected older sisters who were diagnosed 7 percent of the time, the study found.

Read more here. 

Twins Studies in Autism

Scientists have for decades relied on studies of twins to parse the genetic versus environmental contributions to complex syndromes. Assessing the degree to which a condition affects both members of a set of identical twins, who share the same genetic information, can yield an estimate of the extent to which genetics underlie that condition.

Two new papers explore the genetic and environmental underpinnings of autism using data from the Twins Early Development Study, which follows identical and fraternal twins born in England and Wales in the mid-1990s.

In the first study, published 27 December in the Journal of Child Psychology and Psychiatry, researchers looked at autism traits in 6,413 twin pairs from the Twins Early Development Study and examined autism heritability in a meta-analysis of seven published twin studies, representing another 8,508 twin pairs. Their study suggests that genes trump environment in a big way: When one identical twin has autism, there’s a 98 percent chance that the other twin also has the condition1.

The second study, published 26 November in the Journal of the American Academy of Child & Adolescent Psychiatry, involved 207 identical and fraternal twin pairs, 127 of which include at least one twin with autism2. The researchers found that some autism-linked behaviors are more genetic in origin than others. Specifically, genes appear to largely dictate disruptive behaviors, such as rule-breaking and violent outbursts, whereas environmental factors underlie emotional symptoms such as anxiety.

Fruhling Rijsdijk, a statistical geneticist at King’s College London, was involved in both new studies. We asked her how studying twins can help settle the score between genetic and environmental factors in autism.

Spectrum: What can we learn from twin studies?

Fruhling Rijsdijk: Twin studies give us a handle on how individual differences in the population might be explained by genetic differences. It’s the first step that you would want to take before trying to identify specific genes involved in a certain trait or condition such as autism.

Read more here. 

Baby Girls With An Autistic Sibling Pay More Attention To Social Cues, Which May Protect Them From The Disorder

A child whose brother or sister has autism is considered "at risk," because they are about 15 to 20 times more likely to be diagnosed with the disorder than children without the same family history. A Yale School of Medicine study finds at-risk infant girls pay more attention to faces and other social cues compared to at-risk infant boys.

These superior observational skills could protect the baby girls from developing the disorder, says Dr. Katarzyna Chawarska, lead author and director of the Early Social Cognition Laboratory at Yale.

In fact, girls are four times less likely to be diagnosed with autism than boys, and, when they are diagnosed, girls display less severe repetitive and restricted behaviors than boys with autism, though they are more likely to exhibit "co-occurring anxiety and other internalizing symptoms," the authors note. However, a key feature in almost all children with autism is "atypical" attention to social cues, such as faces.

To evaluate possible sex differences and how they may influence later development, Chawarska and her colleagues measured social attention in 101 infants between the ages of 6 and 12 months who have older siblings with autism. The team also studied 61 infants with no risk of autism. These babies were all shown a video of a woman smiling and cooing at them, while she performed other activities such as preparing a sandwich. Meanwhile, the researchers tracked where the infants focused their gazes and how long.

The results? The girls in the high-risk group paid more attention to people and their faces than all other infants, says Chawarska.

“This increased access to social experiences during a highly formative developmental period predicted fewer social impairments at 2 years of age,” she stated in a press release, adding this may not prevent autism in all cases, but it would mitigate the severity of symptoms.

Read more here. 

Why don't we know what environmental factors cause autism?

In 2013, data from a massive study of more than 85,000 children in Norway suggested that women who take folic acid supplements early in pregnancy lower their risk of having a child with autism. Last month, an analysis of a similarly designed study of more than 35,000 mothers and babies in Denmark found no link between prenatal vitamins and autism risk, raising doubts about the Norwegian finding. Science is always an iterative process, but in the case of pinpointing risk factors for autism, progress has been remarkably slow and difficult. In the past decade, dozens of papers have proposed a vast array of factors that potentially contribute to autism: vitamins such as folic acid, maternal depression and antidepressant use, premature birth, Cesarean birth, advanced paternal and maternal age, overweight parents and exposure to anything from endocrine-disrupting chemicals to air pollutants and pesticides. Some research even suggests that a younger sibling born either too soon or too long after the first child has a heightened risk of autism. All of these are considered environmental risk factors, a term scientists use to refer to anything that isn’t the direct result of a DNA sequence. Almost everyone agrees that autism is caused by a combination of genetics and the environment. But while geneticists can comfortably rattle off lists of dozens of autism-linked genes, there’s much less agreement about which environmental factors contribute to the disorder — and by how much.

 Read more here. 

31

Shrinking pupils may mirror autism risk in babies

It’s been six years since researchers reported the eye-opening discovery that the pupils of children with autism constrict unusually slowly in response to light. The finding raised the intriguing possibility that eyes could act as a window into autism risk, or a biomarker for the disorder. A new study published 3 March in Molecular Autism nudges this possibility closer to reality. It reports that infants who have a sibling with autism — and therefore a 20-fold increased riskfor the disorder themselves — have an altered pupil reflex. But here’s the rub: Unlike the slow pupil reflex seen in children with autism, the reflex in these so-called ‘baby sibs’  is unusually fast.

 Read more here. 

31

1 Autistic Child in Family Hikes Risk for More

Younger siblings of children with autism spectrum disorders (ASDs) had a greater risk of being affected with an ASD themselves, a Danish study affirmed. Compared with children who came from families unaffected by ASDs, those with an older sibling with an ASD were nearly seven times more likely to be diagnosed with an ASD.

 Click here to read more. 

31

The Autism Spectrum | Books for Kids, Parents, and Teachers

Here’s a sampling of titles for students who have been diagnosed on the spectrum as well as their teachers and families, intended to broaden understanding of diverse individual needs and highlight the enormous potential for achievement. For Children and TeensIn Barbara Cain’s novel, Autism, The Invisible Cord: A Sibling’s Diary (Magination Press, 2013; Gr 5 Up), 14-year-old Jenny loves her younger brother Ezra and is the first to come to his defense whenever anyone treats him unkindly, but she also knows that living with an autistic sibling has its challenges. Written in first-person diary entries, Jenny’s story takes readers through a school year of ups and downs, both hers and Ezra’s. Along the way, she describes her brother as a toddler, his speech therapy sessions, and tension that develops among family members about his behavior, as well as her own growth as a sister and independent young adult. Chock-full of incidental information about autism, this is an appealing coming-of-age narrative told by a sensitive, self-aware young woman. Resources for AdultsTemple Grandin, a vocal advocate and designer of humane animal treatment systems, who also happens to be autistic, has recently caught the public’s attention, in part because of an award-winning HBO biopic based on her book Thinking in Pictures (Vintage, 2010). In her latest title, The Autistic Brain: Thinking Across the Spectrum(HMH, 2013), Grandin and co-author Richard Panek look at the science of autism developed by studying functional MRIs of the brain, including Grandin’s, and genetic research. The authors infuse the text with an obvious passion for scientific inquiry, making complex theories and data accessible to general readers. Grandin offers a strong case for increased investigation of sensory problems related to autism and examines the validity and role of self-reporting to aid research. She also urges extreme caution about labeling, which tends to limit individual achievement. She writes, “By cultivating the autistic mind on a brain-by-brain, strength-by-strength basis, we can reconceive autistic teens and adults in jobs and internships not as ‘charity cases’ but as valuable, even essential, contributors to society.”
 Find more suggestions here.

31 

Sibling Risk of Autism

Until recently, the risk of recurrence of ASD was estimated to be between 3% and 10% for children with a sibling diagnosed with any type of autism. Most of these studies were small and affected by selection bias or reporting limitations. A new longitudinal study published by Pediatrics is the largest study of this type to date and used a long follow-up period and prospective investigation techniques to mitigate these limitations. For the study, the investigators enrolled 664 infants who had at least one sibling diagnosed with ASD. Six percent of the infants had more than one affected sibling. Eighty-four percent of the siblings were male. The average age of the infants at the time of enrollment was 8 months. Slightly more than half (56%) the infants were male and 40% of the infants were third-born or later in their respective families. The study reported that nearly 19% of infants with a sibling with ASD will also be diagnosed with ASD by age 36 months, an estimate that is much higher than previously believed. Male infants were nearly 3 times as likely to develop ASD as females. Infants with multiple affected siblings were more than twice as likely to develop ASD compared to those with only one affected sibling. The risks were not affected by age at enrollment, gender or functioning level of the older sibling, or other demographic factors. The authors conclude that these higher-than-expected rates of recurrence have implications for infant screening and genetic counseling. Pediatricians, the authors assert, should be more vigilant about screening for ASD in children with affected older siblings, and parents with children already diagnosed with ASD should be advised of the risk of recurrence if planning on having more children. However, a clear gene-based link to autism is likely a long way from being identified.
 Source

31

Detecting, Studying, and Treating Autism Early: The One-Year Well-BabyCheck-Up Approach

Objectives To determine the feasibility of implementing a broadband screen at the 1-year check-up to detect cases of autism spectrum disorders (ASD), language delay (LD), and developmental delay (DD). Study design The Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist was distributed at every 1-year pediatric check-up; 137 pediatricians and 225 infants participated. Screens were scored immediately, and failures referred for further evaluation. Results Pediatricians screened 10 479 infants at the 1-year check-up; 184 infants who failed the screen were evaluated and tracked. To date, 32 infants received a provisional or final diagnosis of ASD, 56 of LD, nine of DD, and 36 of “other.” Five infants who initially tested positive for ASD no longer met criteria at follow-up. The remainder of the sample was false positive results. Positive predictive value was estimated to be .75. Conclusions The 1-Year Well-Baby Check-Up Approach shows promise as a simple mechanism to detect cases of ASD, LD, and DD at 1 year. This procedure offers an alternative to the baby sibling design as a mechanism to study autism prospectively, the results of which will enrich our understanding of autism at an early age.

 Source

31

Can An EEG Predict Autism Risk?

According to an article from WebMD.com, a new study from the researchers of BMC Medicine used a computer program to study and identify patterns in electrical brain activity, particularly the way nerve cells communicate, from the EEGs of 79 infants. Forty-six of the infants were considered at high risk for autism due to the diagnosis of the disorder in a sibling. Using the data from the computer program, the researchers were able to accurately identify 80% of the high risk infants.

 Click here for the full article.

31