Originally posted on Perfectly Peter: When considering which topic to cover next, it took about half a second to decide on SAFETY. Yes, I deliberately typed that word in all caps. It’s that important. Amid the numerous concerns involved with autism, keeping your child safe is never far from your mind. It is a constant;…
A soaring number of children with autism or Asperger’s have been bullied or even stolen from by their so-called friends, according to a shocking new study.
Nearly 90 per cent of teenagers with the condition said they had been subjected to ‘mate crime’ – where a vulnerable person is manipulated or abused by someone they believed to be their friend.
Many had been so hurt by the experience it had left them too scared to go out for fear of further bullying.
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A soaring number of children with autism or Asperger’s have been bullied or even stolen from by their so-called friends, according to a shocking new study (stock image)
In one appalling case, a ‘trusting and honest’ 24-year-old man with autism had left his credit card and PIN number with a so-called friend only for them to rack up a huge bar bill.
Another case saw a man befriended by neighbours who had then stolen from him and used his home to store illegal drugs.
More than half of 12 to 16 year-old who reported feeling taken advantage of by their friends said that they’d been stolen from. For more than two fifths, the bullying came in the form of physical abuse.
While several parents of children with autism or Asperger’s aged between 5 and 11 said they had been forced to move schools by the bullies.
Thirteen per cent of children in the 5-11 age group had also experienced online bullying which jumped to 21 per cent for the 12-16 age group.
The parents of one 14-year-old said their son had been bullied on several occasions by the very people he believed were his friends.
‘This is an ongoing thing which saddens me to the extreme,’ they said. ‘My son cannot distinguish banter from bullying and thinks it’s ok that his so-called ‘friends’ call him names or ‘accidently’ hurt him or get him to do things for their amusement, but he’s just trying to fit in.
The research also discovered many adults with the condition also feel they are being neglected. The charity warned of the ‘devastating scale’ of abuse and neglect
‘He’s absolutely harmless, extremely vulnerable and it’s so, so hard explaining that people are making fun of him and trying to get him into trouble for their own fun.’
The parent of one young teen said her son had been forced to steal by his friends.
‘He thought he had to do what he was told and complied with demands from so-called friends. Once he was made to steal. He was even made to pull his pants down. He’s had money taken and he’s been threatened. I can’t let him out to play with the kids I don’t know as I feel I can’t trust anyone and he’s so vulnerable.’
Wirral Autistic Charity, who carried out the online study with 141 participants, said it highlighted the shocking abuse being carried out against some of the society’s most vulnerable.
‘The overall picture our survey paints is one of heightened vulnerability amongst people with autism and Asperger’s syndrome to an insidious, hidden form of crime,’ the report stated.
‘Often, the person with autism is unaware that what they consider friendship is potentially an abusive relationship. It is the parents and carers who recognise the issue but then struggle to find the right way to provide support to the individual.’
The most vulnerable age group was 16 to 25 in which every respondent said they struggled to distinguish genuine friends from those who may bully or abuse them.
Worryingly, research also found that over a third of adults with autism in the survey had been subject to bullying or manipulation of a sexual nature – including being coerced into ‘sexting’.
Around half of adults with autism have been abused by someone they know, a separate study by the National Autistic Society (NAS) found which warned of the ‘devastating scale’ of neglect and abuse.
Around half of the 1,300 sufferers questioned by the charity, as part of a successful campaign to influence the Government’s consultation on Care Act which is now in force, said they had been abused by someone they considered a friend.
People with autism can find it hard to interpret other people’s motivations and as a result can be taken advantage of or manipulated, the charity said.
Speaking at the time, Mark Lever, chief executive of NAS, said: ‘These alarming figures paint a depressing picture of the horrendous abuse and neglect experienced by many adults with autism.
‘We have heard deeply distressing stories of men and women living in utterly intolerable conditions, exploited physically and financially by supposed friends or unable to care for themselves without support.’
Parents of children with autism and Down’s Syndrome say Westminster is victimising their families by removing their right to use disabled parking spaces as a result of austerity cuts.
Campaigners now want Holyrood to intervene. Westminster austerity cuts mean most children with autism and Down’s no longer qualify for the higher rate of mobility allowance, which automatically triggers the issuing of a blue badge for disabled parking spaces.
Owain Martin, who is the father of an autistic child, said this means carers are now having to walk long distances with disabled children. Families say some of their children can be prone to running off, having sudden “meltdowns” due to sensory overload or have learning difficulties which make it difficult for them to appreciate danger.
He has now launched a petition to the Scottish Government calling for Holyrood to act following the loss of his son’s blue badge.
The new qualification criteria means if a child can walk for 40 metres they are no longer eligible for the higher rate mobility allowance element of disability living allowance (DLA) – but campaigners say this does not take into account that many children with autism or Down’s need constant assistance to make sure they are safe.
Martin said the changes mean nine-year-old Theo is now far more at risk on regular long journeys to and from his Edinburgh home.
He said: “We now have to park our car often some distance away, instead of in a disabled bay just outside.
“Although Theo can walk the stipulated 40 metres that means you don’t qualify for higher rate mobility, he has to be held by the hand at all times.
“If he’s having a bad day and he’s in a bad mood, if he slips out of your hand he’ll just run across the road.
“Theo is severely autistic. He’s nine and he can’t talk and he’s still in nappies. His behaviour is pretty good unless he has a meltdown, and you never know when that might happen.
“Even though he’s really well behaved, you have to hold onto him the whole time, because if you turn round for a second, he’ll be off, like a whippet.”
He added: “No one is disputing the fact that autistic and Down’s children are capable of walking huge distances – it’s purely personal safety grounds that they need this on.
“A lot of these kids can walk, but a lot of them have got sensory overload issues, where noise and sound can send them into a meltdown.
“This is all part and parcel of the government’s welfare reforms, which I’m totally frustrated with. It just feels like they’re totally victimising the weakest.”
The law has been changed in Wales to ensure that anyone “with a mental disorder who is unable to follow the route of a familiar journey without the assistance of another person” automatically qualifies for a blue badge. Campaigners and parents like Martin want to see similar changes introduced in Scotland.
Labour MSP Duncan McNeil is also backing changes to the blue badge rules. He tabled a motion on the subject in the Scottish Parliament when he heard the story Aiden McLevy, of Greenock, who has Down’s Syndrome.
“Aiden has low muscle tone and sensory awareness,” said McNeil. “He often trips or refuses to walk and sits down on the pavement. He has a lack of safety awareness and is unpredictable and dangerous in car parks.
“The law needs to change. In its current form it is discriminating against people with Down’s Syndrome and autism who are under the age of 16.
“The Scottish Government consulted last year on amending the legislation. There was overwhelming support for doing so but nothing has happened yet. It is behind the curve on this.”
McNeil hopes, in early September, to secure a members’ debate in order to keep the pressure on the Scottish Government.
“Rectifying the law would give these children and their families that extra bit of support they desperately need,” he added.
“It is important to note that many children and young people with Down’s Syndrome can walk but still present a danger to themselves and others because of little or no awareness of danger from traffic. Moreover many remain unable to follow a familiar journey on their own.”
It is not only children with autism and Down’s who are struggling to get blue badges for parking.
Ian Hood, co-ordinator of Learning Disability Alliance Scotland, said the changes had also affected people with other mental health issues and learning disabilities, including some adults.
“More and more people are being affected by this,” he said. “We know many people who need two members of staff when they are out in public to keep them safe or stop them running out into the road. The closer they can park to a venue or shop, the better. And isn’t that what blue badges are for?”
A Transport Scotland spokesman said decisions about eligibility for a blue badge were made by local authorities with the Scottish Government providing the “overarching legislative and policy framework for the scheme.”
He added: “Recent reforms to the scheme mean the criteria focuses on an applicant’s mobility.
“However Transport Scotland has recently established a working group which is considering whether the blue badge scheme should be extended.
“The group is studying evidence on potentially extending the eligibility criteria for the blue badge scheme to include people, who as a result of a ‘diagnosed mental disorder’, have little or no awareness of danger from traffic.” …………’
What Families Face When Children with Autism Enter Adulthood 2:56
Nickolas Kubicsko and his family were about to take their first family vacation in seven years.
There was no question where they’d go: The Happiest Place on Earth. Twenty years old at the time, two years ago, Nick had been obsessed with Disney movies since he was a little guy.
“He very much liked his videos to the point where there was a while he would go back and forth to school with the duffel bag with 150 to 200 videos. He would get these impulses and needs to (think) ‘I have to take this to school with me,'” said his mother Lenore Kubicsko said.
Nick has Autism Spectrum Disorder and for years when he was a teenager it just wasn’t possible to take him to Disney.
On the spectrum of autism, Nick’s symptoms are more severe. He communicates through a computer device that generates speech and struggles with social interactions. He needs supervision and learns best in a one-on-one environment.
But now here they were — on the Dumbo ride in Fantasyland. Nick had a spark in his eyes. His mom and sister grinned from ear to ear.
They were able to make the trip because Lenore had found a new way to help Nick after he’d gone through a period of destructive behavior. His local school district on New York’s Long Island was paying for aides and tutors who would work with Nick in the home.
Problem was — all of that was about to be taken away. Nick was nearing his 21st birthday.
Federal law guarantees an education for children with developmental disabilities like autism until the age of 21. But after turning 21 (each state determines the exact date), those young adults lose the specialized help and structure they’ve had for most of their lives. And there is no equivalent state or federal support required to take over.
Parents of children with autism compare it to falling off a cliff.
“Happy graduation,” Lenore Kubiscko said with sarcasm in her voice. “Everything that we’ve worked for we are taking away and you will leap off a cliff into nothingness. Right now the picture is nothingness, it’s black. Absolutely black.”
Mary Clancy was feeling the same way. Her son Eric was about to turn 21 too and graduate from a specialized school for children with disabilities called the Rebecca School — a place he loved and thought of as his family away from home. After a legal battle, the Clancy’s won the right to have their local school district reimburse them for tuition, which averaged about $100,000 per year. But that would stop at graduation.
“Without purposeful things to do, he will fall back into the autism world. Into his own inner world,” Mary said. “He’s so much happier out of it. But that’s where his brain takes him. It’s hard.”
For three years, Dateline followed these two families as their sons graduated from the education system and moved into uncertain terrain.
We watched as these mothers navigated bureaucracies, made phone calls for hours on end and got on waiting lists that were filled with thousands of names already.
As adults, their sons are eligible for Social Security and they can apply for services funded by Medicaid. But they were warned by parents and other advocates that many of the programs offered would not be tailored to autism. And even for programs that they didn’t think were ideal, there are waiting lists. Every state decides how to spend its Medicaid dollars and so there are great variations from state to state. In Florida for example, there are waiting lists that contain as many as 20,000 people.
Autism prevalence rates have more than doubled over the last decade. And according to Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, an advocacy group for adults with autism, an estimated half a million young people with autism will age out in the next ten years.
“It’s a tsunami of children who are aging to adult life,” Walder said. “And we really have no safety net for them, or very few safety nets.”
Walder emphasized that people don’t stop having autism when they turn 21. “That is one of the general misconceptions about autism — is that it only affects children,” she said. “You do not outgrow autism.”
In 2012, the US Government Accountability Office issued a report that found students with disabilities face longstanding challenges in accessing services as they “transition” to adulthood. The report cited a lack of sufficient information or awareness of the full range of service options, long waiting lists and a lack of clarity over which government agencies are responsible for helping young people.
“Although federal agencies are engaged in some coordination efforts,” the report found, “these efforts represent a patchwork approach… there is no single, formal, government-wide strategy for coordinating transition services.”
After a recommendation from the GAO, the federal government issued a new “Federal Interagency Strategy” in February of this year.
“I think we have a lot of work to do,” said Sharon Lewis, Principal Deputy Administrator of the Administration for Community Living at the Department of Health and Human Services and the Senior Disability Policy Advisor to the HHS Secretary.
“I think what’s important to recognize is that when we talk about youth and young adults with autism, we’re talking about a really broad range of people. When the CDC estimates that 1 in 68 8-year-olds in this country have an autism spectrum diagnosis, we’re talking about kids, some of them who are going the earn PhDs at Harvard, and some of them who are going to need 24/7 supports for the rest of their lives.”
Lewis said she understands the frustrations of families of children with autism and agreed that it’s unfair how much stress is put on parents. She said it’s unfortunate that too often the time students spend in the education system isn’t helping prepare them for the future.
“We have a long way to go,” Lewis said. “We know that students with disabilities don’t graduate at the same rates as their peers. They don’t necessarily exit with the same sets of skills. And we have to really use our education system to insure that students have the opportunities to be contributing citizens regardless of the severity of their disability.”
“We have not addressed the need for long-term service and support in this country,” Lewis said. “There have been multiple efforts at multiple levels, in the Congress, in the Administration, to come up with a long-term care financing structure. And there has not been political agreement.”
Lenore Kubiscko and Mary Clancy hope that by adding their voices to the discussion, others will feel empowered to speak up.
“There needs to be a real mobilization,” Clancy said. “A real movement of people. Not just to demand services but to demand a change in the way autism is viewed … It’s not a frightening, dangerous thing … They are very gifted people who want a life, just like everybody else.”
Framework to navigate food selectivity, alternative diets, nutritional deficits
A new guideline for the nutrition of management gastrointestinal symptoms in children with autism spectrum disorders (ASD) provides a framework for clinicians to navigate frequently seen issues such as food selectivity, alternative diets and nutritional deficits. The expert panel was convened at Marcus Autism Center, an affiliate of Children’s Healthcare of Atlanta and the resulting guideline was published online by the Journal of the Academy of Nutrition and Dietetics (JAND).
“Children with autism are at increased risk for feeding and gastrointestinal (GI) concerns compared with peers and both of these issues involve nutrition management. We viewed the lack of an evidence-based guideline regarding nutrition management of GI symptoms in children with ASD as unacceptable,” said co-author William Sharp, PhD, director of the Pediatric Feeding Disorders program at Marcus Autism Center and assistant professor of pediatrics at Emory University School of Medicine. “Our goal was to establish a standard manual of care for nutrition management which clinicians around the world could refer to.”
The project involved a nationwide search to establish a six-member committee of expert dietitians with a combined 125 years of clinical experience working in the field of nutrition and autism. The resulting JAND paper includes a decision-making flowchart, detailed description of intervention steps, and management examples of two GI concerns, constipation and eosinophilic esophagitis (a chronic allergic inflammatory disease), conditions frequently managed with nutrition intervention.
“The committee developed the guideline with consideration of the unique dietary, medical, and behavioral challenges observed in children with ASD. This includes high rates of food selectivity observed in children with ASD, frequent use of caregiver-initiated complementary/alternative diet therapies, and growing concern regarding possible nutritional deficits and excesses often observed in this population,” said co-author Rashelle Berry, lead dietician at Pediatric Feeding Disorders program at Marcus Autism Center.
Sometimes food selectivity contributes to GI symptoms, but in other cases the selectivity is in response to a preexisting problem such as a food allergy or gastroesophageal reflux. At the same time, alternative diets such as gluten-free, casein-free diets or other diets that restrict or eliminate certain food groups are often initiated by caregivers. Emerging evidence also suggests children with ASD may be at higher risk for nutrition-related conditions such as obesity or poor bone growth.
“Children with autism, like their typically developing peers, present with medical conditions that require nutrition intervention,” said Berry. “Awareness of the unique challenges seen in this population is needed so that clinicians are well-equipped to plan effective interventions. The ultimate goal of nutrition management in autism is resolution of symptoms, promotion of adequate growth, and assurance of a nutritionally complete diet.”
The guideline states that in cases of severe food selectivity, nutrition therapy should occur concurrently with feeding therapy. The guideline also advises on the use of nutritional supplements or liquid formulas in this population. Consultation with a registered dietitian nutritionist is recommended when working to create a nutritionally complete diet that also works to alleviate GI concerns.
“A key take home message from this guideline is that nutrition management in ASD should play a central role in a child’s overall plan of care, ideally from the time of diagnosis,” added Sharp.
Summary: A brain-chemistry deficit in children with autism may help to explain their social difficulties, according to new findings. The research team found a correlation between low levels of vasopressin, a hormone involved in social behavior, and the inability of autistic children to understand that other people’s thoughts and motivations can differ from their own.
Karen Parker and her colleagues found correlations between a hormone involved in social behavior and some of the social difficulties experienced by children with autism. Credit: Norbert von der Groeben
A brain-chemistry deficit in children with autism may help to explain their social difficulties, according to new findings from the Stanford University School of Medicine.
The research team found a correlation between low levels of vasopressin, a hormone involved in social behavior, and the inability of autistic children to understand that other people’s thoughts and motivations can differ from their own.
The research will be published July 22 in PLOS ONE.
“Autistic children who had the lowest vasopressin levels in their blood also had the greatest social impairment,” said the study’s senior author, Karen Parker, PhD, associate professor of psychiatry and behavioral sciences.
The findings raise the possibility that treatment with vasopressin might reduce social problems for autistic children who have low vasopressin levels, a hypothesis that Parker and her team are now testing in a clinical trial.
However, the new research also showed that children without autism can have low vasopressin levels without displaying social impairment, Parker noted; in other words, autism is not explained by a vasopressin deficit alone.
Investigating vasopressin
Autism is a developmental disorder that affects 1 out of every 68 children in the United States. It is characterized by social and communication deficits and repetitive behaviors. The new study examined a social trait that psychologists call “theory of mind”: the ability to understand that others have different perspectives. Poor “theory of mind” makes it harder for people with autism to empathize and form relationships with others.
Vasopressin is a small-protein hormone that is structurally similar to oxytocin. Like oxytocin, it has roles in social behavior. Vasopressin also helps regulate blood pressure.
In the new study, the researchers first verified that vasopressin levels in the blood accurately reflected vasopressin levels in the brain by measuring the hormone’s levels simultaneously in the blood and cerebrospinal fluid of 28 people who were having the fluid collected for medical reasons.
They then recruited 159 children ages 3-12 for behavioral testing. Of these children, 57 had autism, 47 did not have autism but had a sibling who did, and 55 were typically developing children with no autistic siblings. All of the children completed standard psychiatric assessments of their neurocognitive abilities, social responsiveness, theory of mind, and ability to recognize others’ emotions, which is known as affect recognition. All children gave blood samples that were measured for vasopressin.
In all three groups, children had a wide range of vasopressin levels, with some children in each group having low, medium and high levels. Children without autism had similar scores on theory of mind tests regardless of their blood vasopressin level, but in children with autism, low blood vasopressin was a marker of low theory of mind ability.
Testing the hormone’s effects
Parker and her collaborator, Antonio Hardan, MD, professor of psychiatry and behavioral sciences, are now investigating whether vasopressin treatment improves social ability in children with autism. They are interested in whether the hormone is beneficial only for autistic children who start with low vasopressin levels or whether it might benefit all children with autism.
Story Source:
The above post is reprinted from materials provided by Stanford University Medical Center. The original item was written by Erin Digitale. Note: Materials may be edited for content and length.
Journal Reference:
Karen Parker et al. Arginine Vasopressin Is a Blood-Based Biomarker of Social Functioning in Children with Autism. PLOS ONE, July 2015 DOI: 10.1371/journal.pone.0132224
Stanford University Medical Center. “Low levels of hormone linked to social deficit in autism, study finds.” ScienceDaily. ScienceDaily, 22 July 2015. <www.sciencedaily.com/releases/2015/07/150722144631.htm>. ………….’
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