Tag: Family and Parenting

Families of youth with autism face big barriers to care, gaps in services

Case Western Reserve University researchers examine needs, services for youth with autism and their family caregivers

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Photo by Tim Graf

New research at Case Western Reserve University found big gaps in services and continued care for children with autism—and their families—as they transition from adolescence to adulthood.

The families need more support, including improved job training, access to services and transportation, according to research from the university’s Jack, Joseph and Morton Mandel School of Applied Social Sciences.

Researchers surveyed 174 families from Northeast Ohio to examine the needs and barriers to services for youth with autism—from 16 to 30 years old—and their family caregivers.

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Examining the issues

Participants were recruited from  28 public and private agencies and organizations. The survey asked about services—both received and needed—as well as top concerns. Chief among them: limited access to information, reported by 51% of the respondents. Other issues include waiting lists or services not being available (44%), location (39%) and cost (37%).

Researchers also examined the quality of the services provided. They found that often families don’t know where to turn for service, or what services exist.

“The number one thing we heard from parents was that they weren’t aware of the services available to them,” said Karen Ishler, a senior research associate at the Mandel School and co-director of the project.  “How do you know what you don’t know? Who do they talk to?” 

David Biegel, the Henry L. Zucker Professor of Social Work Practice at the Mandel School and one of the project’s co-directors.  said there were some positives learned from the research, too. More than 60% said they “see eye-to-eye” with their spouse/partner regarding care, and more than 65% of the caregivers reported other positive aspects of care.

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“Autism spectrum disorder (ASD) affects the entire family,” said Biegel, “Many young people with ASD are at risk for reduced quality of life in adulthood. Additionally, families of adolescents and young adults with ASD face all kinds of stressors—especially during those critical transition years.”

Take, for example, finding a job. Children with autism are allowed to stay in public schools until age 22. When they finish, though, employment training and support dries up, according to the study.

“What happens when they age out? It’s a growing concern,” Ishler said. “We have to look at the service delivery, because we know there are many unmet needs.”

A growing concern

In 2018, Centers for Disease Control and Prevention (CDC) reported an increase in autism’s estimated prevalence in children, based on an analysis of 2014 medical and educational records of 8-year-old children nationally.

In 2004, one in 166 children nationally were diagnosed with autism; in 2018, that ratio was one in 59.

“A lot of these kids diagnosed at 4, 5 and 6 years old are now becoming young adults,” Biegel said. “It’s putting new pressures on them, and particularly their families, as they age out of school-based services.”

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One caregiver’s response about his or her daughter summed up the problem: “Don’t assume that just because she is highly intellectually functioning that she doesn’t need support and acceptance socially.”

Biegel and Ishler found that 82% of those with autism live with their parents into adulthood. “This confirms what we already know: families shoulder the burden of autism,” Biegel said. The study found that 28% family members had elevated anxiety and 35% had elevated symptoms of depression. 

“We tend to emphasize the people who aren’t doing well,” he said. “We knew there were going to be issues. But some  families are doing just fine—they’ve figured out how to navigate the system. However, here is also a significant number of families that have major concerns and needs. Our hope is that these results stimulates discussion and awareness.”

The study was funded by the International Center for Autism Research and Education (ICARE) through a Mt. Sinai Foundation catalytic grant.

Protecting kids from risky drinking

Alcoholism: Clinical & Experimental Research

Photo by Felipe Ponce
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Many parents permit their adolescent children to drink alcohol, believing this helps teach them responsible use and avoids the appeal of ‘forbidden fruit’. In research studies, greater parental permissibility for alcohol has been linked to earlier and heavier drinking in adolescence. However, it is not clear whether parents allowing adolescents to drink is itself to blame, or if this kind of permissibility is simply a marker for other factors (relating to the family, parents or child) that increase the risk of problem alcohol use among adolescents. For example, parents’ own heavy drinking, family sociodemographics, and adolescents’ friends’ use of alcohol can all affect the likelihood of alcohol misuse among adolescents, and each of these risk factors might also be underlying causes of parents allowing drinking. In a new report published in the journal Alcoholism: Clinical & Experimental Research, researchers from Pennsylvania State University have used intergenerational data from a contemporary UK study to examine whether parents allowing adolescents to drink is itself associated with risky drinking in adolescence, beyond other such risk factors.

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The Millennium Cohort Study (MCS) has collected data from over eleven thousand parents and children from infancy through to 14 years, using regular interviews. Children were asked questions about their alcohol use when they were aged 11 and 14 years; the data showed that by age 14, half had drunk more than a few sips of alcohol, around 10% had drunk heavily, and 3% had drunk heavily at least 3 times in the past year. Seven percent had made a rapid transition to heavy drinking, defined as escalating to having at least five drinks at a time, within a year of having their first drink.  

Parents of 14-year olds were asked if they permitted their child to use alcohol, with about 16% of parents indicating that they did allow this. Using a series of statistical analyses, the researchers found that these teenagers faced an elevated risk of heavy alcohol use at age 14, even after accounting for a large host of other risk factors measured earlier when children were age 11. Specifically, children who were permitted to drink alcohol had over twice the odds of engaging in heavy or frequent heavy drinking by age 14, and almost double the risk of a rapid transition to heavy drinking, than those whose parents did not permit alcohol use.

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These findings do not support the idea that allowing children to drink alcohol inoculates them against alcohol misuse, and will help to target prevention and screening efforts to reduce underage drinking. However, the researchers note that because adolescent heavy drinking and parental permissiveness about alcohol were measured at the same point in the survey (at around age 14), the findings represent an association rather than cause and effect; further research will be needed to establish whether parental permissiveness leads to adolescent heavy drinking, or whether adolescent drinking over time leads parents to become more permissive.

Parents Allowing Drinking is Associated with Adolescents’ Heavy Alcohol Use. J. Staff, J. Maggs (pages xxx).

ACER-19-4039.R1

A sensor to save children and pets left in vehicles

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Credit: University of Waterloo

Graduate students Mostafa Alizadeh, left, and Hajar Abedi position a doll, modified to simulate breathing, in a minivan during testing of a new sensor.

A small, inexpensive sensor could save lives by triggering an alarm when children or pets are left alone in vehicles.

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The new device, developed by researchers at the University of Waterloo, combines radar technology with artificial intelligence (AI) to detect unattended children or animals with 100-per-cent accuracy.

Small enough to fit in the palm of a hand at just three centimetres in diameter, the device is designed to be attached to a vehicle’s rear-view mirror or mounted on the ceiling.

It sends out radar signals that are reflected back by people, animals and objects in the vehicle. Built-in AI then analyzes the reflected signals.

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“It addresses a serious, world-wide problem,” said George Shaker, an engineering professor at Waterloo. his system is so affordable it could become standard equipment in all vehicles.”

Development of the wireless, disc-shaped sensor was funded in part by a major automotive parts manufacturer that is aiming to bring it to market by the end of 2020.

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Analysis by the device determines the number of occupants and their locations in a vehicle. That information could be used to set rates for ride-sharing services and toll roads, or to qualify vehicles for car-pool lanes.

Its primary purpose, however, is to detect when a child or pet has been accidentally or deliberately left behind, a scenario that can result in serious harm or death in extremely hot or cold weather.

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In such cases, the system would prevent vehicle doors from locking and sound an alarm to alert the driver, passengers and other people in the area that there is a problem.

“Unlike cameras, this device preserves privacy and it doesn’t have any blind spots because radar can penetrate seats, for instance, to determine if there is an infant in a rear-facing car seat,” said Shaker, a cross-appointed professor of electrical and computer engineering, and mechanical and mechatronics engineering.

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The low-power device, which runs on a vehicle’s battery, distinguishes between living beings and inanimate objects by detecting subtle breathing movements.

Researchers are now exploring the use of that capability to monitor the vital signs of drivers for indications of fatigue, distraction, impairment, illness or other issues.

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Shaker supervised graduate students Mostafa Alizadeh and Hajar Abedi on the research.

A paper on their project, Low-cost low-power in-vehicle occupant detection with mm-wave FMCW radar, was recently presented at an international conference in Montreal.