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For Some Families Quarantine Means A Black and Blue Autism Awareness Month

Blue fluNote: This article describes perfectly some of the agony I've been reading on special needs lists, Facebook feeds and elsewhere. Many, many families with a loved one with autism and even/also Asperger's are facing dramatic violence at home. Others like the family in the article face exhaustion, stress and regression beyond the usual. This April, autism is like every other sickness, medical condition, trauma - told to sit the season one out while Coronivirus sucks up all the media and medical attention.  From the article: "In one household, a mother was forced to hire a removal truck to cart almost every piece of her furniture into storage after her fifteen-year-old daughter 'quite literally trashed the family home'." In another, a 16-year-old boy who is 'not coping at all' launched a mahogany dining chair straight at his parents.

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The forgotten faces of the coronavirus crisis: How COVID-19 has upended the worlds of exhausted parents caring for children with autism - leaving them to battle gut-wrenching regression and violent outbursts

Kathrine Peereboom is mother to three lively boys, Oliver, six, Joshua, five, and four-year-old Tyler, all of whom are profoundly autistic.

Together with husband Steve, Ms Peereboom raises her sons on the Gold Coast in Queensland while working full-time as the founder and CEO of Spectrum Support, a charity dedicated to people caring for loved ones with Autism Spectrum Disorder (ASD).

ASD is a range of developmental disabilities including autism and Asperger syndrome that cause significant social, communication and behavioural challenges.

People with ASD communicate, interact and learn differently to typically developing children, with cognitive abilities ranging from gifted to severely impaired. One in 70 Australians were diagnosed with the disorder in 2019.

Like all children with ASD, Ms Peereboom's boys crave routine and thrive in structured environments where they follow the same schedule every day.
Coronavirus upended the carefully crafted timetables that have taken parents like the Peerebooms years to perfect, after schools shut and carers were forced to suspend home visits as social distancing restrictions tightened across every state from March 23.

Ms Peereboom told Daily Mail Australia these sudden changes have caused enormous distress for her sons, who are still struggling to understand why they have not seen their teachers or caught the bus to school - their favourite activity - in well over a month.

She believes the pandemic has highlighted fundamental shortages in Australia's disability sector and a glaring lack of consideration for the autistic community that must be addressed when the crisis ends.

'I haven't heard the word autism come out of anybody's mouth [in relation to coronavirus]. Nothing from the government at all,' she said.

'It's been extremely difficult. The first week of home schooling was a complete and utter disaster. We've seen behaviours appear that are just totally outside their normal characters.'

Oliver, the eldest, has struggled most of all. The six-year-old simply cannot comprehend why - as he sees it - his parents have suddenly suspended his activities and confined him to the house.

Oliver wakes at 5am each morning and 'vocal stims' for roughly 14 hours a day until he goes to bed at 7.30pm.

Stimming is a form of repetitive behaviour like drumming fingers, rocking back and forth or making sounds from the mouth to relieve stress and discomfort. It is common in children and young adults classified on the autism spectrum disorder.

Fighting back tears, Ms Peereboom said she has seen Oliver's cognitive abilities unravel before her eyes since the country implemented stage two social distancing restrictions on March 23 in a bid to slow the spread of the deadly virus.

'It's been gut wrenching,' she said of his rapid regression....  Read more at DailyMail.uk.





Comments

mlinn

I think this illustrates the position that autism treatment is not simply "educational". Thankfully ABA therapy has been considered an essential service in my state and my son has not had an interruption in services. Yes my son is an adult and still gets ABA therapy - - it looks a lot like a day hab program but much higher quality and it's covered by insurance. Autism is a disorder that requires treatment, and treatment, by definition, is medically necessary and essential. The public schools need to acknowledge this and figure out how to provide inclusive education collaboratively with high quality therapy, in partnership with Medicaid and insurance. As it stands now its usually one or the other. Situations like we're in now really show how this fragmented service model is completely inadequate for our kids.

Angus Files

Agree same here Grace lovely weather, had him down to the village shop same faces,much the same chat,then up the hill and down the hill takes the edge of him and kills us...no new Fauci norm, just normal.

Pharma For Prison

MMR RIP

Grace Green

I read on our Scottish government website that if someone has special medical needs they can go out more often than others, and the example given was of an autistic person who may need to go to the park several times. My son and I have been fortunate to be able to go for a long walk in the hills today, and I can tell you, it makes everything seem normal again! Autistic people sometimes need to get away from people! I know some of you reading AofA will be having an impossible time, but some young autistic people might benefit from a space of their own they can be quiet in, if that were possible.

Driver

Very hard for my son that always wants to go go go. He can only be home for very short periods of time. Lots of driving around listening to the music, walking in the park, or sitting in the car with music in a parking lot because the weather sucks. Most importantly the drive thru are open for his favorite food and drinks. There just was an opening at a very small respite (it’s ok )that he goes for a few hours. Scrambling to see what is available for summer camps as school is out for the year and that probably include ESY. Trying to figure out how to balance work, as I’ll be getting back soon.
Thank you Age of autism for all you do as no one understands
I want to comment more but I have a teen that demands I take him somewhere

4Bobby

@Aimee Doyle
You are right about Autism Awareness Month... doesn’t do much for many of our families anyway.

Aimee Doyle

@4Bobby -

Like your son, mine loved the weekly grocery shopping and he is more than sad he can't go any more. His favorite pizza is only inconsistently stocked at the grocery story. He is also sad about the loss of Special Olympics and other physical and social activities he used to participate in. And he's in the middle of the ASD spectrum, so we haven't seen violence or destructiveness, but we've seen an increase in negative behaviors like stimming, verbal tics, angry outbursts. He understands, sort of, but not really. He gets that people stay home when they are sick, but to avoid getting sick? More abstract than he can handle.

Haven't heard a thing about Autism Awareness month, not nationally, and not locally here in Maryland. But, even when we light the country up blue, seems that a good two thirds of the spectrum are still stuck in the shadows. There's never any awareness of severe autism, or of any autism that isn't high functioning and quirky.

L Land

Somewhat comforting to read that we are not alone in dealing with these issues. My graduate student who goes to school out of state and trying to do studies online is living at home - an added change with C19. My adult child with autism has been demanding and aggressive including banging on doors to the point of breaking them and yelling for days till he exhausts himself and sleeps for days. Lovely cycle
Take care everyone.

4Bobby

I haven’t heard the government here in the US mention autism either. Ironic given that it’s “Autism Awareness” month. Here in NY our governor has ordered wearing a face mask or covering when in a store or even outside if you’re unable to maintain social distancing. He did say if you can “medically tolerate it.” It would be nice if he’d address how this affects the autistic population.

Meanwhile at home... my 20 year old non- verbal son doesn’t understand why he can’t go to school, the movies, or his favorite restaurant Applebee’s. He wonders why his dad goes food shopping without him when that was a special weekly activity they did together.

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