Wednesday, December 11, 2013

Dan Aykroyd: Asperger's and Tourette's Diagnoses

Dan Aykroyd - in Australia recently - has opened up this week about his struggles with Asperger's, as well as Tourette's syndrome.


In a new interview with the Daily Mail, the Canadian "Ghostbusters" star revealed he was diagnosed with Asperger syndrome in the 1980s, when his wife convinced him to seek professional help.
"One of my symptoms included my obsession with ghosts and law enforcement — I carry around a police badge with me, for example," Aykroyd said. "I became obsessed by Hans Holzer, the greatest ghost hunter ever. That’s when the idea of my film 'Ghostbusters' was born."
And long before he was diagnosed with high-functioning autism, Aykroyd was told he had Tourette's at age 12.
"I had physical tics, nervousness and made grunting noises and it affected how outgoing I was," he told the Daily Mail. "I had therapy which really worked, and by 14 my symptoms eased."
The 61 year old Canadian actor also happens to have heterochromia iridum - one green eye and one blue - and syndactyly, which means two of his toes on each foot are webbed.
Plans for a third "Ghostbusters" instalment could start shooting as early as 2014.
"We're going to really put it into ninth gear, in this third one," Aykroyd said earlier this year. "It's going to be very, very exciting."

Sunday, December 8, 2013

Susan Boyle: Diagnosed with Asperger's

Susan Boyle - the Scottish singer who shot to fame on the TV show 'Britain's Got Talent' in 2009 - has revealed she has been diagnosed with Asperger's syndrome, a high-functioning form of autism.


Susan told Britain's Observer newspaper she was diagnosed a year ago and told of her relief after years of bullying for her learning difficulties.

The now 52-year-old says: "It was the wrong diagnosis when I was a kid."

She adds: "I was told I had brain damage. I always knew it was an unfair label. Now I have a clearer understanding of what's wrong and I feel relieved and a bit more relaxed about myself."

Susan's rendition of 'I Dreamed A Dream', from the musical 'Les Miserables' went viral - it has garnered nearly 140 million views on YouTube. She has since recorded four - yes, FOUR! - hit albums.

Boyle's quirky sense of humour and golden voice won her legions of fans, but her rapid rise to fame and the huge press attention drove her close to breakdown.

More about Asperger's: it affects communication and social interaction. Sufferers have difficulty picking up on social cues and gauging appropriate behaviour.

Susan was, sadly, bullied throughout her school years and nicknamed "Susie Simple" by her classmates.

Susan has recently had tests which have revealed she has above-average intelligence, she tells the Observer.

"I was told my IQ was above average," she said.

Susan says her Asperger's diagnosis would not make any difference to her life: "It's just a condition that I have to live with and work through".

"I think people will treat me better because they will have a much greater understanding of who I am and why I do the things I do."

Currently, Fox Searchlight is reportedly interested in making a film of Susan Boyle's life.

Tuesday, November 19, 2013

Study: People with autism do not lack empathy

A new study has found that individuals with Asperger’s Syndrome don’t lack empathy – in fact if anything they empathise too much.

Yes. This ground-breaking study suggests people with autism spectrum disorders such as Asperger’s do not lack empathy – rather, they feel others’ emotions too intensely to cope.
This article says:
"People with Asperger's syndrome, a high functioning form of autism, are often stereotyped as distant loners or robotic geeks. But what if what looks like coldness to the outside world is a response to being overwhelmed by emotion – an excess of empathy, not a lack of it?
This idea resonates with many people suffering from autism-spectrum disorders and their families. It also jibes with the “intense world” theory, a new way of thinking about the nature of autism.
As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne the theory suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency but, rather, a hypersensitivity to experience, which includes an overwhelming fear response.
“I can walk into a room and feel what everyone is feeling,” Kamila Markram says. “The problem is that it all comes in faster than I can process it. There are those who say autistic people don’t feel enough. We’re saying exactly the opposite: They feel too much.”"
To read more of this article, click here.
This study confirms what I know about my son. He is often too emotional, too aware, too conscious of other peoples' feelings, always wanting to connect, even kissing and hugging fellow school pick-up parents at his school who he has never met. After (even before) they get over their initial shock and I explain it all, every single parent embraces and loves it.
As do I... as do I. And I wouldn't change that for anything.

Thursday, July 11, 2013

Jacob Barnett at TEDxTeen: 'Forget What You Know'

This young man is... breathtaking.

A video is below, and here is the accompanying description. Incredibly inspiring stuff.

"Jacob Barnett is an American mathematician and child prodigy. At eight years old, Jacob began sneaking into the back of college lectures at IUPUI. After being diagnosed with autism since the age of two and placed in his school's special ed. program, Jacob's teachers and doctors were astonished to learn he was able to teach calculus to college students.

At age nine, while playing with shapes, Jacob built a series of mathematical models that expanded Einstein's field of relativity. A professor at Princeton reviewed his work and confirmed that it was groundbreaking and could someday result in a Nobel Prize. At age 10, Jacob was formally accepted to the University as a full-time college student and went straight into a paid research position in the field of condensed matter physics. For his original work in this field, Jacob set a record, becoming the world's youngest astrophysics researcher. His paper was subsequently accepted for publication by Physical Review A, a scientific journal shared on sites such as NASA, the Smithsonian, and Harvard's webpage. Jacob's work aims to help improve the way light travels in technology."


Watch Jacob speak here:



Incredible young man, huh?!

The video caption continues:

"Jacob is also CEO and founder of Wheel LLC, a business he started in his mom's garage, and is in the process of writing a book to help end "math phobia" in his generation.

Jacob's favorite pastime is playing basketball with the kids at his charity, Jacob's Place. It is a place where kids with autism are inspired every day to be their true authentic selves...just like Jacob.

In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. At a TEDx event, TEDTalks video and live speakers combine to spark deep discussion and connection in a small group. These local, self-organized events are branded TEDx, where x = independently organized TED event. The TED Conference provides general guidance for the TEDx program, but individual TEDx events are self-organized.* (*Subject to certain rules and regulations)."


For more on Jacob, this fantastic piece from the site 'Good News Network' elaborates:

"Jacob Barnett didn't speak for years. Doctors declared that autism would keep him from ever doing simple tasks like reading or tying his own shoes. But after his mother began injecting fun and music and science into his life, he emerged from his cocoon.
Fortunately for Jacob, his mother noticed that when left to play on his own, the 3 year-old created wondrously complex maps and patterns. She yanked him out of "special ed" classes -- where he was forced to do things that caused him to fail -- and began preparing him for kindergarten herself.
The many forced hours of therapy, trying to persuade him to talk, finger paint, and to do basic physical tasks only frustrated and bored Jacob, making him more withdrawn.
Back at home, his mother let him explore shapes and shadows. The more he played with things he enjoyed, the more his shell cracked open, and he began speaking and opening up to others.
For more, click here.
Jacob's mother Kristine Barnett adds:
"Every child has a special gift inside of them, regardless if you are a little different," she told the BBC. "I operate on a concept (that calls for) surrounding the child with what they love - be it music or art, whatever they are drawn to."

SO very true.


Saturday, June 29, 2013

'The Real Housewives of New Jersey': Jacqueline Laurita's son says "I love you"

Okay, yeah.

I like reality TV.

I am, I will admit, maybe a little over it of late. Like, say, 18% less satisfied than usual.

And that defintely goes for my affection for 'The Real Housewives' franchise.

However! Sometimes, a clip from the show may surprise me with an actual message beyond demonstrating privileged lives and/or living beyond your means.

Like this beautiful clip from the current season of 'The Real Housewives of New Jersey', which features cast member Jacqueline Laurita's young son - and the first time he says 'I love you' to his mother in a very long time (he has regressed - he has said those precious words in the past).

It is touching and sweet and reminds parents of neurotypical kids why parents of kids with autism rejoice SO much in the little things. It tears me up every single time.

Watch the clip here.

What has your child with autism done recently that makes you jump for joy?


Tuesday, May 14, 2013

Carly Fleischmann: 'The Doctors'

Have you heard of Carly Fleischmann?

At the age of two, Carly was diagnosed with severe autism and an oral motor condition that prevented her from speaking. Doctors predicted she would never intellectually develop beyond the abilities of a small child. Although she made some progress after years of intensive behavioural and communication therapy, Carly remained largely 'unreachable.'


And then, at the age of ten... she had a breakthrough.

While working with her therapists Howie and Barb, Carly reached over to their laptop and typed in "HELP TEETH HURT".

Not surprisingly, everyone was astonished.

This was the beginning of Carly's journey toward self-realisation.

Carly first joined 'The Doctors' in September 2012. Here she is more on her role on the show:



Inspiring, huh?

Monday, April 29, 2013

Autism from a father's perspective: Tuks and Levi's story. "He's my little hero and my son."

I saw this photo on my friend's Facebook page and loved it. For many reasons...


Firstly, I know this man. His name is Tuks, and he is the father of one of the kids who attended the Learning Links special needs playgroup alongside my son Rafael, which I attended each week for three years with both my kids in tow. I barely missed a week.

Tuks would come each week also, with his two gorgeous sons. Sometimes, his wife Kelly [a teacher] would come along too, and later, they brought along their newborn baby girl Ruby.

The couples' son Levi was diagnosed with autism, language delay and global development delay. He is now five years old.

They also raise Kelly's young boy Joel, 14, and their brood Noah, 3, and Ruby, 18 months [with another little one on the way!]

Here is what Tuks said about being dad to a son with autism:

"Levi has been diagnosed with autism and global development delay. The only word that can sum up the way I felt after receiving that diagnosis is "relieved". This was because it answered so many questions as to why he behaved the way he did and why his 'quirky' little habits were not him being 'weird'. Although the diagnosis answered a lot of our questions and explained so much, I didn't realise that this was just the beginning of a very long and difficult road.
I have participated in so many of Levi's therapies and have learnt so much in so little time. I took him to structured special needs playgroup every week [Learning Links] where I was usually the only male parent and listened in as some mothers broke down and were emotional because of the sheer stress of having a child with autism and special needs. Also I participated in occupational therapy, speech therapy, and went to many workshops for parents where sometimes things went right over my head, but asking countless questions did help, and as time went on I feel like I became the autism expert, ha!
I think fathers would benefit a lot from being involved. It's not about just doing it for the sake of doing it, but doing it for our child. If my wife Kelly and I don't help Levi to be the best he can be, who will? It's our job as his parents, his voice, his guide to get him to live a happy life.
The progress to date for Levi is very good and he surprises us everyday. Looking back at where he was two and a half years ago... he's scream when we went to visit family and friends, screamed when we walked into a shopping centre, screamed at breakfast, lunch and dinner time, and was pretty much being so miserable and stressed and anxious.
Today, he answers when he's asked a question, gets excited when I tell him we're going to visit family or to the shopping centre.(his favourite store would have to be Target, but Aldi comes a close second).
I only see positive improvements with my son Levi, and I will continue to love and support him forever.
He's my little hero and my son."
Bless you, Tuks. You are no doubt his hero, too.
Do you know dads who partcipate in their son's therapy? Please share some stories.

Friday, March 29, 2013

Autism comments that are really not helpful: 'The Australian Autism Handbook'

I was very pleased to receive an advance copy of the newly revised 'The Australian Autism Handbook' - it's out on Monday April 2, 2013.

I bought the first edition of the book as soon as I sought and received an autism diagnosis for my son, when he was age two.

It has proven to be a mini god-send in every way: stories, resources, and confidence in what I am doing to help my son - the lot.

This section, below, had the most effect on me. If you have a child with an autism diagnosis you will understand why.

Here is an extract [with my own comments below each], reproduced with kind permission from the authors Benison O'Reilly and Kathryn Wicks and Jane Curry Publishing:

The new book cover is below:



'Comments that are REALLY NOT HELPFUL' [I love the authors' use of caps!]:

'Oh, he will grow out of it.'
[No, he or she won't. They learn skills to cope and flourish. But grow out of it. No.]

'Well, he looks alright to me.'
[Autism need not be 'visible' for it to exist.]

'Three is too young to label a child'.
[The earlier the intervention, the better. Kids can be diagnosed as young as two, sometimes even younger. And it's not a label. That's what YOU'RE doing - labelling. A diagnosis means help for the child, sooner.]

'God only gives special children to the special parents.'
[Um, thanks? I know the intention of this one is often kind, but sometimes... this comment grates a little. Oh, so you got the 'non-special' child and you're leading a less troublesome life because you are a not so special parent?]

'Oh, don't worry about that. All children... chew their clothes/tantrum/spin objects in front of their eyes.'
[I know this one is intended to help me feel better about my child - "look, my son is quirky, too!" - but autism is vastly different from the quirks all young kids have.]

'You've got to look after yourself you know, dear.'
[Yes, that I know. But the role of a carer/advocate/autism mum demands you put your child first. And so, a mani/pedi appointment or gym session is put last on the list... intervention appointments are never missed. That's the difference.]

'Maybe you shouldn't work so much.'
[Way to lay on more guilt! This one would have cut me up big time if it was uttered... because I grappled with this one myself in the early days of my son's diagnosis. Did I work too much, even if it was from home? That one just didn't wash when I examined it... I have twins. One autistic, one not. And I interacted with them in equal amounts. And just as it is for mothers of neurotypical children, work is often an escape from parenting, with a nice bonus that we make money we need for the family... or, you know, for shoes.]

Also, add authors Benison and Kathryn, lengthy descriptions of children who are doing so well at ballet/school/music lessons etc can be a bit hard to hear, especially in the early days.

Agreed... in the early days. Now, it's a mutual brag fest amongst us, in the nicest possible way, and I like it. Who doesn't want to tell friends how well their child is doing, and perhaps especially so if your child has had and continues to have challenges. The victories are to be celebrated, so come join us!

I can also add to the above list; I was told by a fellow school mum [who'd just met me, and cast eyes on my son for a few seconds] that my son "doesn't belong in that autism class!"

Oh, really? So you say he doesn't 'look' autistic, which means you don't know what autism 'looks like', you have no special needs background, and now you're questioning my decision to place him in an autism support class? Breathtaking - in the worst possible way.

Thick skin. We autism mums need it.

What have you been told about autism that kinda knocked you for six? 


Here are the book authors, Benison and Kathryn:
Benison O'Reilly  and Kathryn Wicks

You can 'like' the book's Facebook page by clicking this link.









Wednesday, February 20, 2013

Carly's Café: Carly Fleischmann's View Of Autism

This experience is viewed through the eyes of Carly Fleischmann, a 17 year old girl living with non-verbal autism.


It's based on an excerpt from the book 'Carly's Voice: Breaking through Autism', and it explores how - for someone with autism - a simple act like going for a coffee can descend into chaos.

'Carly's Café' was developed as an interactive video that allows the user to experience autism from the inside out.

Visit http://www.carlyscafe.com/ to enjoy the full experience.

UPDATED

Carly's Café has just been announced as silver medal winner at the Cannes Lion Festival with this film.


Wednesday, February 13, 2013

Delaying an autism diagnosis: why it serves nobody

I have become such an advocate for autism that sometimes, I need to contain myself a little when I hear that someone is avoiding getting a diagnosis for their child. It could be an anecdotal story someone has told me, it could a story I overhear. But one thing is certain: it upsets me, and delaying a diagnosis serves nobody, least of all the child.

Another thing to remember is that - in NSW, at least - particular funding for kids with autism expires on the child's seventh birthday. Yet another reason to access services as quickly as possible to have the greatest impact, and get the diagnosis the child needs.

I asked co-author of the book 'Australian Autism Handbook' Benison O'Reilly what she thought about delaying an autism diagnosis out of fear:


"I would never judge a parent for delaying diagnosis out of fear or denial. I was guilty of this myself for a time.  No-one wants to acknowledge that their beautiful child, the child they assumed was perfect at birth, has a ‘lifelong developmental disorder’. It’s almost like a death in the family; the death of the child you thought you had.

Unfortunately, pretending there isn’t a problem isn’t going to make it to go away.  In fact, the longer a parent delays diagnosis the longer their child has to retreat into autism and fall further behind his or her peers.

The year before (Benison's son) Joe’s diagnosis was definitely the worst of my life. I was heartbreaking to watch my son go backwards and feel powerless to stop it. Of course, the day of diagnosis was awful—I won’t deny that. But once we’d got Joe enrolled in a good early intervention program I felt in control again and much more hopeful. Eight years later I remain optimistic."

Have you had some doubts about an autism diagnosis? Feel free to comment below.

To read Benison's first opinion piece for 'Our Autism Adventures' click here.

Thursday, January 3, 2013

'My Name Is David' - Autism Viral Video. Watch.

'My Name Is David' is a powerfully simple animated short film from one of the animators of 'Robot Chicken', Matt Manning, for the Autism Speaks site.

It depicts a young student's speech to his fellow classmates about his autism.

The short film features the actual words and voice of the author of the speech - 14 year old David Shapiro Sharif.

David's speech does an exceptional job in not only educating kids and adults about autism [in my opinion, educating adults of school-aged kids is just as important], it also gives a voice to millions of autistic kids around the world. I love it.

Watch. And share:



How wonderful was that? If you don't have an autistic child, did you come away feeling like you know much more about autism?

And if you do have an autistic child, don't you feel somehow validated on their behalf?

For more on Autism Speaks, click here.