Finding A Kinship With Autism
After the girls were diagnosed, a therapist told Mrs. Olsen that their autism likely “didn’t come from nowhere,” she recalled. “There’s a strong biological component.”
As she learned more about autism, she came upon a book by a woman with Asperger’s Syndrome and recognized herself in its pages. “I read a list of traits for female autism, and it was me to a ‘T.’ I realized that there is a group of people who think like me, and I fit in somewhere.” She joined online communities of women with current or past ASD symptoms, some of whom struggled as children but learned to “blend in” as adults, she said. Many, like Mrs. Olsen, were born before Asperger’s Syndrome became a diagnosis in 1994. Mrs. Olsen does not have an ASD diagnosis, nor is she seeking one.
This kinship with her daughters on the spectrum helps her relate to them in ways that people who do not have autistic symptoms may not, she said. “It’s so helpful to understand how they think.”
Rates Are On The Rise
An estimated 1 in 40 children;in this country have autism to some degree, according to a recent study from Pediatrics;based on 2016 data. That’s about;1.5 million children ;between the ages;3 to 17. Nationwide, autism strikes three to four times more boys than girls; the rates are about the same for kids of all races.
Although there seems to be an autism epidemic, the Pediatrics study;attributes the increasing prevalence to more inclusive;reporting. The definition of autism has been expanded in the past decade to include a wider spectrum of problems with communication and social interaction. “Ten years ago, many children with mild autism were simply not diagnosed,” says Adrian Sandler, M.D., a developmental-behavioral pediatrician at Mission Children’s Hospital, in Asheville, North Carolina, and chair of the American Academy of Pediatrics’ committee on children with disabilities. Plus, there are more state and federal programs for autistic kids, giving doctors an incentive to diagnose and refer them. However, there may be additional, unknown reasons for the spike in autism rates, and researchers are investigating everything from environmental toxins to viruses to food allergies.
Running To Something Or Away From Something
Experts divide wandering into goal- and non-goal types. While the desire to find an alluring pond is goal-directed, running to escape a stressor is non-goal-related. Our fight-or-flight kids will bolt when anxious, says Lori McIlwain, chairwoman of the National Autism Association and a key player in the fight against wandering and elopement, adding that these are the children who get struck by vehicles. We might see a snake and run away. Our kids may see something we wouldnt be afraid of. But they are and the adrenaline misfires. Still, the majority of parents surveyed reported that their child is playful or happy and focused while wandering; far fewer said their child is sad, anxious or in a fog when they take off.
Last week, autism advocates scored their first major victory in their campaign to better respond to wandering when the Centers for Disease Controls safety subcommittee overseeing autism announced a new medical diagnostic code for wandering. This sub-classification, which will go into effect October 1, will allow clinicians to add a wandering code to an ASD diagnosis, akin to a diagnosis of autism with epilepsy. The code is not exclusive to autism; it covers other conditions where the child or adult wanders, including a range of cognitive disabilities.
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Children Of Autistic Parents
It is thought that autism is caused by both genetic and environmental factors together. However, with recent studies there seems to be a larger genetic fact than initially attributed. It is not uncommon for a parent with Autism, or Aspergers Syndrome to have one or more autistic children. Many have reported multiple children on the autism spectrum suggesting a very strong genetic basis. Looking at family members often strengths these findings. Many times there are one or more relatives that have autism, or are reported to have differences, or trouble with social situationsshowing autistic-like traits.
There Is No Scientific Evidence That Vaccines Cause Autism
A much-talked-about report from the 1990s claimed there may be a link between certain vaccinations given during infancy and autism. Those claims have since been debunked by subsequent studies and the evidence behind those earlier claims has been found to be unreliable.
The American Academy of Pediatrics has compiled a list of dozens of studies that have found there is NO connection between childhood vaccines and autism. The Centers for Disease Control and Prevention has said the same.
Veenstra-Vanderweele says that this train of thought is dangerous. Vaccinate your children. He says there is no scientific evidence that pinpoints vaccinations as a cause of autism.
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Concerns Over Medicalizing Wandering
However, the code has not received universal support from the autism community. Adults with autism have voiced strong concerns that by categorizing wandering as a medical condition rather than a behavioral one, parents, schools and others will no longer ask why a person might be wandering, In his video Autism and Wandering: An Important Message, Landon Bryce, who runs the site thAutcast, asks, If you couldnt talk, and the only way you could communicate that something was bad was to move away from it, how would you feel about people making a law that that should be ignored?
He notes that a child might bolt because of sensory discomfortperhaps a teachers perfume is making him sick, so he flees the classroomor, in the worst-case scenario, abuse in the home. In the first example, a child might be placed in a more restrictive school setting, thus impeding his educational opportunities; in the second, it could result in him being returned to an unsafe environment. After the code was approved, Bryce wondered how long it would take before other advocates start calling for insurance companies to pay for parents to get their kids implanted with microchips, like pets?
But McIlwain says the code is aimed at protecting, not harming, children with the highest risk of wandering-related injury or death.
Autism And The Family: Issue 3
Dealing with a diagnosis of autism puts a strain on any marriage. Men and women tend to react to the news differently, according to McCarton, and that can add to the stress.
“Women are profoundly sad. But they hit the ground running,” McCarton says, referring to the typical reaction women have on hearing the diagnosis. “They mobilize. Men often retreat into work.” Also, men often question the diagnosis or deny it.
“When the couple reacts differently,” McCarton says, “that’s the first crack in the marriage. There is no one with whom can share her grief.” She says not all couples follow this pattern, of course, but she has observed many that do.
The solution is to make time for each other, which is more easily said than done. Families are already time-strapped dealing with behavioral therapists, many doctor appointments, and above-average financial stress. Even so, experts say, couples have to feed the relationship — even if it’s watching a video together or talking after the kids are asleep.
It’s also crucial to steal solo time just for yourself, McCarton tells parents. She asks them: “What were the things you loved before?” When parents protest they have no time or money to indulge themselves, she says: “It doesn’t have to be expensive or take up hours of the day. It can be going to Starbucks and having a cup of coffee by yourself for half an hour. It can be taking a shower for 15 minutes.”
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In Autism It Depends On Which Parent Passes On The Genetic Abnormality
- Duke University Medical Center
- While it has been known that genetic abnormalities are implicated in susceptibility to autism, new research by Duke University Medical Center researchers has added another variable the particular parent who contributes the defective gene can determine whether or not the child acquires autism.
PHILADELPHIA — While it has been known that genetic abnormalities are implicated in susceptibility to autism, new research by Duke University Medical Center researchers has added another variable the particular parent who contributes the defective gene can determine whether or not the child acquires autism.
The researchers point out that autism is an extremely complex disease with a wide spectrum of behavioral manifestations and it is likely that other genes or environmental factors are involved. However, their sophisticated genetic analysis has for the first time suggested that a phenomenon known as genetic imprinting is at work in autism and that it appears to be an important factor in the disorder.
Genetic imprinting is a process by which a gene’s expression is governed solely by which parent donates the gene copy, rather than by the classic laws of Mendelian genetics, in which genes are either dominant or recessive. Imprinted genes typically become inactivated, or turned off, during the development of egg or sperm cells, or shortly after fertilization.
An Appropriate Response Plan
Meanwhile, no one at Connors school had called his mother or the police. He could have been struck by a car, raped, abducted, McIlwain says. When the police saw people at Connors school searching for him, they realized he belonged there. Only then did someone at the school notify her. The advocate notes that had the school had a proper emergency response plan or if Connor had been wearing an ID the situation could have been resolved quickly. Instead, he was still in the cop car when they called me, she says.
I got him out of that school as fast as I could, McIlwain says. She then enlisted a lawyer to help add a 1:1 aide to his Individualized Education Plan to escort him during transitions, such as when he leaves the classroom to go to a therapy. With the added support, Connor is able to attend a school for typically developing children. McIlwain feels the code will help keep the aide should her son continue to need one, so in October shell have his pediatrician provide an updated letter noting the diagnosis for the school and his IEP.
While some adults with autism worry that a medical code could be used to justify the restraint or seclusion of a student, or place him in a more restrictive school environment, McIlwain says her experience with Connor demonstrates how the exact opposite could result. If more parents can use the code to get their wandering child the supports he or she needs, the child could enter a less, not more, restrictive setting.
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Ascertainment Of Autism And Psychiatric Diagnosis
In Sweden all infants and preschool children regularly undergo routine medical and developmental examinations. At age 4 a mandatory developmental assessment is conducted. Children with suspected developmental disorders are referred for further assessment by a specialized team in a child psychiatry unit or habilitation service. Diagnostic information is reported to the Patient Register. The register has nearly complete national coverage of psychiatric diagnoses since 1973. With a rare disease the sensitivity is a smaller problem than the specificity of the diagnostic codes. For this we rely on previous validation studies of psychiatric codes generally, and for autism specifically. With prospective follow-up until 31 December 2009. Autistic disorder was defined by codes from the International Classification of Diseases, version 9 299. A/B/X and version 10 F84.0 while ASD also included ICD-10 F84.1 , F84.5 , F84.8 and F84.9 .
Certain Pregnancy Complications Drugs And Other Environmental Factors May Play A Role In Autism
In addition to your genetic makeup, other factors in the environment, like your mothers health during her pregnancy with you and certain chemicals she was exposed to, may play a role in determining who develops autism. Conclusive and definitive research on what these risk factors are, however, is scant, according to a review paper published in the March 2017 issue of the journal Molecular Autism.
Remember in the example of the individual with the gene associated with autism, having that gene didnt necessarily mean the individual would have autism? Similarly, for the environmental factors known to contribute to autism risk, none of the factors necessarily or definitively mean an individual will develop autism.
Some of the environmental risk factors that have been linked to autism risk include:
- Having a parent who was older when you were born
- Malnutrition in your mother during pregnancy with you
- Complications during pregnancy or birth
- Pregnancies spaced less than one year apart
Other factors with inconclusive evidence as to their role in the development of autism include: exposure to air pollution, mercury, and heavy metals, according to the 2017 Molecular Autism paper.
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Known And Unknown Causes Of Autism
While there are over a dozen established causes of autism, most are very rare genetic disorders or prenatal exposures. As a result, approximately 85% of autism cases are idiopathic.
In other words, in the vast majority of cases:
- A child is born to parents who are not autistic
- Autism is not a known part of the child’s family history
- The child was not premature
- The parents were under 35 years old
- Tests did not uncover genetic anomalies that might cause autism in the child
- The mother was not exposed to or taking any of the drugs known to increase the risk of autism while she was pregnant
New Sibling Study Shows Autism Runs In Families
Posted August 15, 2011
This morning I read a new study which addressed the question of autism in siblings – how common is it? The findings will be of vital interest to many; most especially young families with an autistic infant.
Earlier studies and “conventional wisdom” suggested the incidence of autism in siblings was in the 3-10% range. This new study shows those numbers to be very far from the mark.
Overall, scientists found autism in 19 percent of the younger siblings. However, the incidence is higher in families with two or mote autistic kids. In that case, a new sibling‘s chances of being autistic rose to more than 32 percent.
Being a boy makes a difference too. “Only” 9% of girl siblings were autistic, as compared to 26% of boys. I found this difference quite interesting because I often wonder if autism is under-diagnosed in females. In this study, all the kids were screened with the gold-standard ADOS or ADIR tests prior to age three. So even with top-notch screening, we still have more autistic boys.
Those are some strikingly high percentages. As high as they are, and knowing autism is a spectrum condition, I have to wonder how many non-diagnosed siblings will eventually turn out to have less severe but still noticeable “differences.”
The conclusion is inescapable: autism does run in families. According to these findings, the more autistic kids you have, the more you are likely to keep having.
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Autism Is Not An Illness
Being autistic does not mean you have an illness or disease. It means your brain works in a different way from other people.
It’s something you’re born with or first appears when you’re very young.
If you’re autistic, you’re autistic your whole life.
Autism is not a medical condition with treatments or a “cure”. But some people need support to help them with certain things.
Autism And The Family: Issue 2
Whether the child with autism is the first-born, in the middle, or the baby, parents often worry about the effect that dealing with the autism — and the time commitment it involves — will have on the other children. “I think most parents bend over backward so it doesn’t affect the other children,” says McCarton.
In a recent study published in the Journal of Autism and Developmental Disorders, researchers compared siblings of autistic children with siblings of non-disabled children and found those with the autistic sibling were actually better adjusted psychosocially and emotionally. They did find, however, that it’s more difficult for the non-disabled child to cope with the autistic sibling if multiple risk factors such as low income are present.
Exactly why the siblings of autistic children scored better isn’t known. Wright says they may have a higher level of maturity from observing and being involved in the care of a child with autism. “The message is,” Wright tells WebMD, “lots of siblings are doing OK.”
Still, it’s a good idea to be sure the other children get one-on-one time with each parent, McCarton says. Many parents divide up the children. For example, the mother may take over a behavioral therapy session for the child with autism one day, and the father will take the other children out for a movie. Then they’ll switch roles the next time.
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Causes Of Autism Remain Mysterious
While autism is increasingly common, its cause is usually unknown. In a general way, researchers believe that there is a strong genetic component to autism and that there are environmental “triggers” that may cause certain individuals to develop symptoms; for any individual, however, the precise nature of the genetic and environmental triggers is unknown.
When autism is of known origin , it is referred to as secondary autism. When autism is of unknown origin, it is called idiopathic autism.
Multiple Children Multiple Rewards
A small gesture to one of my children means the world to them.
Despite the additional challenges, parenting multiple children with autism also brings additional rewards.
For the Yeager family, caring for Aaron may have sparked a desire for independence in his sisters, Mrs. Yeager said. They like to help their brother, and pull together as a family, but they also are self-reliant, she said. “They don’t like to be helped. My oldest rarely came to us for help with schoolwork, and Hayley became that way, too,” she said. “They are more independent than some of their classmates.”
Raising children with autism can give a parent a unique perspective, an appreciation of things that might otherwise be taken for granted with typical children, Mrs. Olsen said.
For example, it may take more effort to nurture connections with those children, she said. “These children really do want to connect. And they dont know how, and they don’t feel it, until someone breaks into their world,” she said. So she tries to break into their world by looking at it the way they do. One time she found a tiny object on the floor that seemed like trash to her. But by imagining it through her daughter’s eyes, she realized it might be a tiny treasure. When she presented the object to her daughter, the girl was instantly grateful. “A small gesture to one of my children means the world to them.”
And finding that entrance is well worth it, she said. “It’s pretty darn amazing.”
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