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What parents wish you knew about ‘invisible disorder’

3 min read

“IF YOU’VE met one person with autism, you’ve met one person with autism.”

This well-known quote by Dr Stephen Shore, internationally renowned for his research surrounding autism, shows that living with the condition can mean different things to different people.

Because autism is a spectrum disorder, no two autistic people are going to be affected in exactly the same way, which can make it difficult for other people to really understand what autism is.

For people at the severe end of the spectrum it can be extremely debilitating for both them and their family, but for others it may be more mild and less pronounced.

Research commissioned by Victoria’s peak autism body, Amaze, found that while the majority of Australians have heard of autism, less than a third of those actually knew how to support someone with autism.

And it found that only four per cent of Australians with autism believe people in the community know how to properly support them and more than half feel socially isolated.

WHAT PEOPLE WISH YOU KNEW

Autism affects about one in 100 people and the CEO of Autism Awareness Australia, Nicole Rogerson, said there are certain things that people generally don’t understand about the condition.

“You can’t see autism — it is an invisible disorder. Children who have autism don’t look any different from other children,” Ms Rogerson told news.com.au.

“Parents often say to us they wish others weren’t so judgmental when their child is behaving in a slightly different way or they say something that may be inappropriate.”

People with autism process things differently and can become overwhelmed by things that most people probably don’t even notice, like bright lights and loud noises.

Ms Rogerson said that many of the parents they work with experience judgment from other parents who just assume they can’t control their children.

“They get tired of people looking at them and rolling their eyes like they are a bad parent if their child is acting out,” she said.

“If you are in a supermarket and your child is getting overwhelmed and maybe making a scene it makes it 10 times worse when people around you are giving you dirty looks or making comments.”

Research found that 42 per cent of Australians with autism sometimes feel like they are unable to leave the house for fear of people behaving negatively towards them.

Many people with autism have behavioural and social difficulties that can inhibit their ability to interact with others.

This results in a lot of people knowing about autism but having little first-hand experience in fostering social situations where autistic people feel comfortable.

“People with autism are less likely to participate in events or activities unless an organisation or the community specifically sets it up to be inclusive,” Ms Rogers said.

“This leads to people with autism and their families often feeling isolated because it is just easier to opt out from those types of situations.”

HOW TO MAKE EVERYONE FEEL INCLUDED

Ms Rogerson said that if you are unsure how to make an adult or child with autism feel included in a social situation, the best thing to do is just to ask.

“If you are not sure about something and you know someone with autism, just ask them. Talk to their parents or talk to the person with autism themselves,” she said.

“It is much better to ask and learn rather than just shying away from interaction for fear of saying or doing the wrong thing.”

People who have autism and parents of autistic children are usually more than happy for people to ask questions as they are so used to people not understanding or misjudging them.

While autism affects people differently, there are common traits across the spectrum, particularly with difficulty understanding social behaviours.

Autistic people process language literally, which makes it difficult to read social cues such as tone of voice and facial expressions.

For example, idioms like “give me a hand” or “I’m all ears” can be confusing when taken literally.

“Meeting just one person on the autism spectrum doesn’t tell you everything about autism so patience and understanding is essential,” Ms Rogerson said.

According to Ms Rogerson, it is important for communities to continually question whether they are actively fostering inclusivity.

“It is important to really think about whether you haven an unconscious bias in your community or organisation,” she said.

“For example, if you are in a sporting club that doesn’t have any autistic people, ask yourself why that might be and if it is an inclusive environment.

“If our society was genuinely more inclusive then it would be a better world for everyone, not just autistic people.”

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Health

Instagram mega mum takes down account after accusations she used her children for advertising 

2 min read

Instagram mega mum takes down account after accusations she used her children for advertising 

Photographs of a family holiday in Florida are labelled as a partnership with Visit Florida, which Mrs Hooper described as a “work trip” in an interview, whilst the couple spent time in Madagascar in October. 

Their social media profiles have also acted as a springboard for the couple to write three books between them about pregnancy and parenting. 

Mr Hooper,  a 35-year-old management consultant, is taking part in a “social experiment” whereby Renault have placed a camera in his car for a year. 

Mr Hooper then posts videos of family trips – tagged as being a “paid partnership with Renault UK” – including one in which he says that it is “really the only place” he can had one on one time with his daughters. 

Recent Mumsnet posts from Mrs Hooper reveal that it is not just on blogs where the ethics of posting images of their children are discussed as a photographs of one of her daughters on a potty “was one I wasn’t happy with him posting I felt it crossed the line”, she revealed. 

When asked why she did not demand he remove it she replied: “The reason I felt it wasn’t wise to have it taken down was I felt it would only anger people and fuel more threads so I remained silent and never mentioned it until now. “

Those close to the midwife, who works on a ward one day a week, say that the de-activation of her Instagram account is likely to only be temporary as she takes a few days breather from online rows. 

The midwife had also become embroiled in accusations of bullying on her page after her followers repeatedly criticised someone who accused her of hypocrisy. 

Despite posts suggesting that she had been reported for breaches of the Nursing and Midwifery Council’s social media rules, her employer Kings College Hospital said that it had received no such complaint. 

Mrs Moody refused to comment on why she had suspended her account. 

She has faced criticism for featuring her children in her posts for a number of years and has repeatedly defended her decision. 

Her followers have commented on Mr Hooper’s account asking her to ignore the “bullying” and come back, with one commenting: “People still can’t handle someone being a mother and a professional, and a person in their own right.”

Justine Roberts, CEO and founder of Mumsnet, said: “Many Instagram stars are in our own Influencers Network, we consider them to be Mumsnetters and value them highly.

“We know that some have taken the feedback on board; the criticism of a lack of clarity when it comes to labelling sponsored posts seems to have led to some Instamums being more transparent about sponsorship and advertising, which is great and much appreciated by mums.”

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Health

‘No-frills’ funerals on the rise as families fear of engaging with death

1 min read

'No-frills' funerals on the rise as families fear of engaging with death

Professor Douglas Davies, a professor in the study of religion at Durham University, said young people were scared of the emotional impact of bereavement and warned that a modern “avoidance of being upset” could stop people grieving properly. 

He said they lived in a “safety world” which shielded them from the impact of negative emotions. 

“Think of all these youngsters who have been looked after from the time they’re babies, driven to school, all that sort of stuff. 

“Death is a bit of a shock when your mother’s been really looking after you for years,” he said. 

He suggested that young people’s prolific use of social media increased the level of “living input” they experienced and made it harder and more painful to think about death. 

“The more information we get into our system, the more we are getting used to being around,” he said, suggesting that an acute “fear of missing out” made it painful to consider “the thought of there being nothing”. 

The practice of direct cremation, already common in America, has received greater public attention since the death of David Bowie in January 2016. He opted for the no-frills service and asked for his ashes to be scattered in Bali. 

But Professor Davies said the emotional impact on mourners of opting for a no-frills funeral had not been fully researched.

“What concerns me there is the fact that our emotions take wave forms and go up and down. The more they go up and down, the more we look back on them and remember and experience the event. 

“If you are removing the fluctuation you are possibly removing the richness of human experience, where it can be negative as well as positive,” he warned. 

He added that families opting for non-traditional forms of funeral such as using a civil celebrant or scattering ashes could end up feeling like they had not given their relative a “good send off”. 

In one case, a family who had used a civil celebrant had later decided to ask a priest to come and do another ceremony because they did not feel the person had been properly laid to rest.

He added that many of the cases where services involved direct cremations were likely to be elderly people with few close relatives left living.

Others would opt for the service because of its low cost, which can be thousands of pounds less than a standard funeral. 

Royal London’s report found that the average funeral in 2017 cost £3,784, a three per cent rise on the previous year. 

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Health

Royal wedding live: Meghan Markle and Prince Harry’s ceremony begins

1 min read

Royal wedding live: Meghan Markle and Prince Harry's ceremony begins

With just 15 minutes until the bride arrives, here’s what music is being played inside St George’s Chapel. A folky/antique theme dominates in this sequence of pieces.

EDWARD ELGAR SALUT D’AMOUR

Elgar’s first published piece. Originally written in 1888 as a gift for his future wife Carice. He sold the rights to the publisher for two guineas, which was a really bad move. It became massively popular and could have earned him a fortune.

GUSTAV HOLST: ST PAUL’S SUITE, 4 TH MOVT

Holst taught at St Paul’s School for Girls and composed this in 1912 for the school orchestra. This movement based on 16 th century English ballad

SIR CHARLES HUBERT HASTINGS PARRY movts 2,3,5

Parry, a leading light of the so-called ‘English Renaissance’ who was the first director of the Royal College of Music in 1883. He wrote his Lady Radnor’s suite in 1894 for the all-women orchestra conducted by Helen, Countess of Radnor. It’s a kind of Baroque Suite in Victorian dress.

PETER WARLOCK: CAPRIOL SUITE

Set of dances based on a book of Renaissance dances composed by Peter Warlock (gifted composer who died in 1930 aged 36).

RALPH VAUGHAN WILLIAMS: FANTASIA ON GREENSLEEVES

Vaughan Williams was a collector of folk-song, and wrote many pieces based on the songs he found. This one is especially beloved, it’s always in Classic FM’s Hall of Fame. More famous and well-known than the tune it’s based on.

ELGAR SERENADE FOR STRINGS

Elgar’s first really successful work, completed in 1893. It remained one of his favourite works right to the end of his life. He liked it because it was ‘really stringy’ – weird phrase but a musician knows What he means – it completely suits a string orchestra, you couldn’t arrange it for something else.

ELGAR CHANSON DE MATIN

In his early days, Elgar was always complaining about having no money, and wrote this delicious piece in 1899 as a deliberate money-spinner for his publisher Novello. It worked.

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