GUEST POST – Adults and Autism

Today’s Guest Post is from Karen, you can follow her on twitter at @kaz747. Karen’s 21 year old daughter has recently been diagnosed with autism and she very kindly agreed to write a post about the diagnostic process.

Having a daughter who was diagnosed at 4 years old and a son who is commencing the process at 10 years old, I was curious as to how the process worked for older children and adults, I found Karen’s post very interesting and I’m sure others will too.

Karen is very happy to answer questions, which you can either do via leaving a comment or contacting her on Twitter. For privacy purposes her daughter’s name has been changed.

“Adults and Autism

“Your daughter has autism.” The words didn’t surprise me but I still felt as a sense of shock when I heard them spoken aloud. This wasn’t a young child that we could set on a pathway of early
intervention therapies. She was 21, an adult.

We’d seen plenty of therapists and doctors over the years. Claire’s health issues began with (or probably before) her premature birth. At one stage she was seeing so many medical specialists our life became one waiting room after another – paediatrician, ophthalmologist, gastroenterologist, endocrinologist, two speech therapists (1 private, 1 government funded), occupational therapist, physiotherapist, podiatrist and psychologist. We also sent her to social skill-building programs in school holidays.

Claire was diagnosed with ADHD, developmental delays and learning disabilities at the age of five and later with anxiety. I remember clearly the day the school psychologist phoned me at work and said, “I’ve taken your daughter out of class and tested her. There is no way this child will learn to read or write in main stream education so you are going to have to look for alternatives.” Claire was in pre-primary at the time. We met with the teacher and principal and decided the best course of action was for her to repeat pre-primary. She did repeat it and despite what the school psychologist said, her whole education was completed in mainstream education. We were so proud when at the High School Graduation she was awarded the Top Student Award for her Hospitality course.

Watching a TV show a couple of years ago we saw a teenage boy with Asperger’s Syndrome. His traits were so similar to our daughter’s. Routine is important in Claire’s life, she lives by the clock. We always had to give her plenty of warning if we were going to go out. She would never drink out of plastic cups or bottles, always cut the tags out of her clothes and wouldn’t wear certain materials. She hated sun cream, lotions and toothpaste. She would have meltdowns at school if it got too loud or if there were too many people around. We gave up on school discos and sports days.

On the other hand she could unscramble anagrams in the blink of an eye, complete 1000 piece jigsaw puzzles in a day, write beautiful poetry and remember amazing facts about random topics like Ancient Egypt and the Latin language. Socially, she always struggled. Throughout school we’d try to encourage friendships but it was hard for her to interact with kids her own age.

We spoke to one of her specialists about our Asperger’s Syndrome suspicion. “We don’t like to label people,” he said. But, as we discovered as we tried to get her help to find employment, the system responds to labels and without one, the right help is so hard to find.

Finally, thanks to an old university friend of mine, I was introduced to a youth worker who herself has a son with high functioning autism. She told me about a specialist psychologist who could assess Claire and determine if she was on the autism spectrum.

The diagnosis process involved five meetings with the psychologist, each meeting lasting 2-3 hours. I met with her a couple of times on my own to go through Claire’s early childhood history and school life; Claire met with her once on her own and we had a couple of visits together. The confirmation of the diagnosis also needs to involve consultation with another specialist – a paediatrician for children and a psychiatrist for adults.

Currently (and I believe this may be changing soon) there are 12 criterion assessed. They fall into three areas – (1) Social; (2) Language and Play; and, (3) Behaviour.

To meet the diagnostic criteria for Asperger’s Syndrome you must meet three criteria – at least two in the (1) Social category and one in the (3) Behaviour category and you must not meet the criteria for question 2(a) which is around delay in the development of spoken language.

For an autism diagnosis you must meet six or more criteria – with at least two from (1) Social, and one each from (2) Language and Play and (3) Behaviour. Claire met 9 ½ criteria. She was diagnosed with Autism.

We are hoping that this diagnosis is the key that will unlock the doors that will enable Claire to get the help she needs to find a suitable job, get involved more with the community and give her the confidence to lead a full and happy life. Our “official” autism journey is just beginning.”

Comments/RTs/shares welcomed, thanks again to Karen.

BookWorm Wednesday – Astrosaurs The T.Rex Invasion

Today’s “BookWorm Wednesday” is once again supplied by T (my 10 year old) – he asked for and received loads of books for Christmas – and it’s a way of utilising his brain cells during the holidays too.

Over to T (as before these are his words, I’ve made minor cosmetic adjustments):

Astrosaurs: The T. Rex invasion

Author: Steve Cole

When Teggs and his crew are on holiday in the spooky stone planet of Sphinx II, Teggs meets his old friend, Tute.

Tute says he discovered a pyramid and Teggs is willing to investigate. Tute said that the pyramid used to belong to the T.Rex’s years back and Lord Ganster discovered it a thousand years ago.

When Teggs, Tute and the crew get there, they spot a T.Rex mummy! But as it disappears in the distance, Teggs, Arx and Tute discover the way in.

Meanwhile, Iggy and Gipsy are investigating a warship that was found a few miles away. But the pair are only lucky enough to fall into a trap led by a large T.Rex bearing his teeth – the terrifying Skunch.

Back at the pyramid, Teggs, Arx and Tute were passing a series of tests eg. dodging laser beams. But the hardest came to building an alien engine. As the lights kept going out to signal the start of a bomb exploding, the three finished a few jewels before. But an alien named Keprish has been controlling Lord Ganster and the mummies.

With Keprish’s power and the T.Rex invasion troops hard on their heels, will the Astrosaurs and Tute ever get out alive?….

Thanks for reading, I’m sure he’d appreciate comments Jx 😘

He was delighted that Steve Cole read his review:

The Castle of Frankensaur – Astrosaurs – Bookworm Wednesday

This is a guest post by my 10-year old T, he absolutely loves reading and this is a book we bought at the weekend for him. We haven’t been sent this to review, T wanted to read and share his thoughts. I’m sure he’d love feedback!

Over to T:

Astrosaurs- The castle of Frankensaur

Author: Steve Cole
Books written in the series: 22

When Teggs (orange-brown stegosaurus) and his crew discover a two-headed dinosaur criminal floating nearby in space, Teggs, Gipsy (a stripy hadrosaur), Arx (agreen triceratops) and Iggy (an iguanodon) follow the creepy space robbers. But the carnivore criminals lead Teggs and his crew to an asteroid called Zeta Three, which beholds a creepy, black castle in the distance, owned by super scientist Dr Frankensaur! But when the Astrosaurs discover that evil carnivore professor, Hydra, is causing trouble inside the castle, Teggs and co are then plunged into a sinister mystery where headless horrors, mutant monsters and creepy cohorts lie in wait. But when the herbivore heroes find out that professor Hydra is controlling Dr Frankensaur, and the fact that Hydra is creating a cunning cohort, the Astrosaurs will need all the luck they need……

My review
I enjoyed this book because of the fact that the Astrosaurs were plunged into a intense mystery and that I didn’t know what was going to happen next. I would recommend this gripping book to people over eight years old because of the age group on the back of the book.

About the author
One of my favourite authors, Steve Cole, has written over four series’ in his writing career. They’re Astrosaurs, Astrosaurs academy, Slime squad and Cows in Action. He’s written over 60 books, imagine how much writing he does!

Thanks for reading Jx 😘 comments/RTs/shares welcomed.

T was overjoyed to learn that Steve Cole had read and RTd his review and sent the following:
@SteveColeBooks: @AutismMumma Thank you so much for forwarding such a lovely review! All best to you all.

GUEST POST – Holidays by Jeff Stimpson

Please see below from Jeff Stimpson, you can follow him on twitter @Jeffslife

Holidays

Holiday weekends at grandpa’s lakehouse have been work. The lakehouse has a computer, cable for the basement TV, a porch for grilling, a path to the lake. The nearest neighbor’s place is through a thin copse of trees and bushes where, when we first went to the lakehouse, the neighbors had put up no gate. The lakehouse also has a lot of doors that Alex (PDD-NOS) found from almost his first instant there. Once I finally snagged him half-way up the living room stairs in the neighbor’s house, and on another holiday I was at the dock fishing with my typically developing younger boy Ned when I spotted Alex’s bright red T shirt flashing across the neighbor’s porch with my wife Jill and his Uncle Rob on his heels.

I hate Alex barging in on neighbors, either at the lakehouse or in our own apartment building; his bolting made the lakehouse too exhausting, at least for me. Soon the neighbors put up a little gate.

Alex, 13, has always seemed to understand what the lakehouse was for; we’d take out the rowboat and he’d never try to jump ship. Basement cable also made it easier for a while: He’d spend hours down there in a carpeted proper bedroom, watching “Sesame Street.” “Grandpa’s house!” he began to say on the car rides up. “Watcha El-MO!”

And he would. Once or twice Alex would emerge upstairs and help set the table. We’d fry him Hebrew Nationals and slice them just so and he would take them to the basement (most trips he wouldn’t eat them) and throughout my family holiday dinner I’d keep an eye on the basement door, ready to bolt should he bolt.

Memorial Day this year promised to be tough. We’ve been bringing the iPad but Grandpa’s house just got a new router that I guess wasn’t quite working yet. Still, Elmo would be waiting on the basement cable. Alex has also been places this year, like to an afterschool program with computers. Just a few weeks ago, Jill and I stepped into his classroom and for an instant wondered who that tall boy was sitting back-to us at the Mac.

“Elmo? Watcha Elmo?” Alex said, sliding behind grandpa’s computer on Memorial Day. If he’s got a seat and seems happy and if he isn’t just down in the basement, I’m happy to go for a minute and see what Ned’s up to, especially if there are folks around the computer to keep an eye on Alex and his orange T shirt. I darted back a few minutes later and Alex was still at the computer, except now he had the browser and router working. Later Uncle Rob and grandpa say the same thing: Alex was the only one who could get the computer online.

I chopped down the weeds in the path to the lake and then took out the kayak and played U-boat for half an hour and soon it was time to eat. There still sat Alex, right next to the adults and Ned talking and talking, and I wondered and glanced but I don’t think anyone noticed this young man with a mustache was watching Elmo. For the third or fourth family meal in a row, I got to eat.

Soon it was nearing time to go. I looked in the basement and the bedrooms and no Alex. I looked in the garage and on the porch. “Jill, where’s Alex?” “Ned, have you seen Alex?”

I glanced through the path I’d cut and saw a flash of orange down by the dock. I ran down. I ran through the path I’d cut, I ran past the neighbor’s gate and rounded the muddy corner and saw Alex in orange. He was sitting at the dock, staring into the water. “Alex, buddy. What’cha doing?”

Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

GUEST POST from Jeff Simpson – Screen Time

(Please read and enjoy this post from Jeff, I am happy to include guest posts on my blog, please DM me if you would like to submit one…..Jeannette)

ScienceDaily reports that children with ASDs “tend to be preoccupied with screen-based media.”

“Alex, hear that?”

My 13-year-old autistic soon peers into his iPad as if peering into a crystal ball. “Alex?” I walk over to the couch and see “Teletubbies” on the screen. Alex peers closer; I see his new mustache in the glow of the screen. “Alex, did you hear me?” He grips his headphones as if I had lunged to seize them off him – which I will have to do about 9 tonight, Alex’s bedtime as he nears age 14.

The study by Dr. Paul Shattuck at the Brown School at Washington University looks at how children with ASDs spend screen time. “We found a very high rate of use of solitary screen-based media such as video games and television, with a markedly lower rate of use of social interactive media, including email,” Shattuck says.

TO: Alex
FROM: Your father
SENT: Wed April 25 2012, 9:13 p.m.
SUBJECT: Go to bed

Nearly 60.3 percent of the youths with ASDs were reported to spend “most of his/her time” watching television or videos. “This rate appears to be high, given that among typically developing adolescents, only 28 percent have been shown to be ‘high users’ of television,” Shattuck says. As cognitive skills increased and children with ASDs grew older, use of social media increased.

“Dad?” says Alex’s typically developing younger brother Ned. “When can I use the iPad?”

Ned deserves the iPad, too, but the thing keeps Alex quiet in the evenings. I ashamed how much I like the quiet; I know I’m not helping Alex. “Soon, Ned. Alex, let’s hit the bath!”

Alex doesn’t seem too interested in social media. He sits evening after evening in the flow the bathtub faucet, never washing his hair unless I ask him to, unless I dribble the shampoo into his palm and teach him to rub it into his hair with both hands. I asked his teachers to teach him to use both hands for things – aren’t they doing that? Often, Alex sits in the tub and stares to the right. After half an hour or so, I hear the water go quiet and Alex emerges into the living room, usually wearing nothing. Did I mention age 14?

“This proclivity for screen time might be turned into something we can take advantage of to enhance social skills and learning achievement, especially recent innovations in devices like iPads.”

I’m ready to take advantage of anything.

———————————————

Jeff Stimpson lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as The Autism Society news blog, and An Anthology of Disability Literature (available on Amazon). He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”