I know many,
For the miracle,
Their only keys,
Need to be.
I know many,
For the miracle,
Their only keys,
Need to be.
They wait to plead their case,
To see their faces,
Can we spare the light?
These beautiful minds,
Bring them to life,
Let them shine,
But I see sparks,
We gotta let them flame,
Let them speak their name,
Let them reach up to the clouds,
Where stars flicker in the distance,
So lonely out in space,
They sing out,
But we’re not listening,
‘Cause we don’t see their face,
But we can’t let them die,
Not when we can make them high,
Hold them like the little miracles,
That live inside,
Let them shine,
Let them live,
Let them read,
Let them grow,
Let them love,
Hold them close,
Let them know,
They’ll get through the darkness,
Can be hero’s,
Don’t blow out their light,
Cause they can’t eat if we don’t feed them,
They can’t read if we don’t teach them,
There is no life,
If we just hide them,
Don’t just let them die.
Let them shine,
Let them shine on,
Be an ordinary hero,
And let them shine on.
These words are not my own. They are lyrics adapted from John Legends beautiful song “Shine”. Although this song wasn’t written about Autism, the moment I heard it, it made me think of my son and of all the other children with Autism out there who deserve to be treated with love, understanding, respect and most importantly, to be allowed to “shine”. It also made me think of all the ordinary every day Autism parents, the everyday, ordinary hero’s, who do what they do, not out of a sense of duty, but out of pure love for their children.
You will always be my hero’s for helping your children to shine.
“I think the reward for conformity,
Is that everyone likes you,
Except yourself.” -
Rita Mae Brown
If this quote speaks to you then speak out,
Because the price that we are all paying,
For our continued silence,
Is simply way too high.
It’s time to teach our children,
That being different,
Isn’t the same,
As being bad.
It’s time to teach our children,
That it’s okay for them,
Exactly who they are,
In whatever way,
And that no,
Of being in this world,
Is more valid,
“In 2005, autism researcher Simon Baron-Cohen opened a New York Times article with the following statement: “By studying the differences between male and female brains, we can generate significant insights into the mystery of autism” (Baron-Cohen). What makes this statement possible, rhetorically, is a process of gendering that has made autism spectrum disorder (ASD) into “The Male Condition”—the title of Baron-Cohen’s piece.”
“Autism is an example of what Judy Segal calls a rhetorical disorder: in the absence of clear biological markers for autism, “discourse fills the space that certainty in medicine leaves unoccupied.”
“in 2010 the APA released working notes for the DSM-V, which offered new criteria for autism and placed Asperger’s syndrome (heretofore a separate disorder) within the umbrella category of ASD. Such a shift would be fundamentally rhetorical, in that it is enacted through language, persuading practitioners to categorize individuals in a new way.”
“Autism is shaped in part by “social meanings, symbols, and stigmas” attached to it. What makes this process unique, in the case of autism, is that these social meanings do not merely demarcate the “normal” (or neurotypical) from the “abnormal” (or neurodiverse); instead, they also differentiate between men and women, in such a manner that the “male condition” is pathologized alongside the autistic condition.
“ In the case of the EMB theory, this commonality stems from the fact that more boys than girls receive autism diagnoses, by a ratio of 4 to 1. These statistical facts, though, are extended to the disorder itself, where maleness is applied to the brains of individuals with autism. In the process, researchers espousing this theory construct a scale, drawing on the rhetorical figure of incrementum, or scale, which positions women, men, and people with autism along a continuum according to the degree to which they possess some quantified trait.”
“An incrementum is simply a scale, but one that can be used for rhetorical purposes. For instance, if we claim that men tend to be heavier than women, who tend to be heavier than children, we have constructed an incrementum, ordering those three groups according to weight. This claim might seem noncontroversial, but imagine constructing a scale in which we measure intelligence, instead, and order individuals according to sex. That type of scale can support a range of unsavory arguments for policies of all sorts, and would be fundamentally rhetorical both in its construction and its use.”
“Sex and gender offer readily available lenses for understanding autism because they are “present” and by referencing culturally specific notions of sex and gender, researchers make those elements hyper present, and, in the process, obscure others.”
“Late twentieth-century rhetorics of technology, gender, and the service economy make it possible to order individuals along new scales, including technological ability and emotional intelligence.”
“ These scales have shaped scientific understandings of autism in ways that direct the attention of researchers to some aspects and deflect attention away from other important issues, including alternative scientific theories, the interests of girls and women with autism, and the issues deemed most important by autistic people themselves.”
This article consists of excerpts from an academic paper written by J. Jack and published in 2011.
Sometimes, when you’re busy being a mum, you forget how keenly your words and actions impact on the lives of your children.
Last night my lovely daughter reminded me of this in the nicest possible way.
You see, over the course of the last week , we’ve both come down with a truly horrible flu.
My daughter came down with it first and after two days of coughing and feeling utterly blue she woke me up in the middle of the night to tell me that her head felt like it was exploding on the inside.
Without thinking twice I jumped up out of bed to check her temperature and then gave her some juice and some paracetamol.
Once those few things were done I invited her to snuggle up with me in bed and promised her that I’d watch over her all night.
Not long after she’d settled into my bed she rolled over and said;
“Oh mother…. I do believe I may well be in my final hours”.
As dramatic as her words sounded, instead of denying her the right to speak her feelings by rushing in and trying to tell her that she was wrong, I once again reassured her that I would be watching over her all night long and then asked her if she’d like me to get her an icy pole to soothe her dry, sore throat.
She agreed to the icy pole immediately and not long after eating it, fell into a deep, sound sleep.
By the time the morning arrived I too had begun to come down with the same dreaded flu.
So we both went off to visit our local doctor who found that my lovely girl had developed an ear infection on top of the flu, which is why she’d felt like her head was “exploding on the inside”.
As for me, well I’d already been in the throes of fighting off a sinus infection, as well as catching the flu, so antibiotics and lots of rest were prescribed for both of us.
Later that night I developed a massive migraine as a side effect of the antibiotics.
In response to my migraine misery, not only did my daughter make a point of coming in and checking on me all through the night, but each and every time she came into my room she would ask me:
“What can I do to make you feel better mum? Can I get you a glass of water? Would you like an icy pole? Do you want me to hold your hand?”
Each time she did this I thanked her for being so kind and thoughtful and each time she would say “It’s okay mum, I know how bad it feels when you’re head’s exploding on the inside.”
The next day, after the migraine had washed away, I once again experienced those same feelings of both extreme love and gratitude for the way my daughter had chosen to love and support me throughout my own night of “final hours”.
When I tried once again to thank her for being so wonderful, she looked at me in confusion and said;
“Mum, why do you keep thanking me? I was only doing to you what you did for me when I felt like my head was exploding?”
Her words really made me stop and think, not only about the importance of the way I had responded to her when she had been feeling so ill, but the importance of the ways that I respond to her on a daily basis and how all of the small kindnesses that I shower her with are now coming out in her personality, despite the fact that many believe that children like my daughter are incapable of showing empathy towards others.
You see, my lovely daughter has High Functioning Autism or Asperger’s Syndrome and many mistakenly think that children and adults with HFA/AS aren’t able to either experience or express empathy for the suffering of others.
Well, I’m here to tell you that my daughter and many like her, can and do experience empathy towards others.
Especially when they grow up being surrounded by both the benefits and the acknowledgement of having empathy shown towards the unique ways in which they experience every aspect of their lives.
So even though sometimes, when you’re busy being a special needs mum and you forget just how keenly you’re words and actions impact on the lives of your children, you may just discover that your children will find their own unique ways to remind you of just how important your words and actions are to them.
And hopefully you too will experience this reminder in the nicest of all possible ways.
The study found more than half the students needed support for bullying and discrimination and that two thirds felt lonely and needed help managing stress.
Three in four said they needed more help understanding teachers in the classroom and managing their homework and concentration.
Autism Spectrum Australia surveyed 100 people aged 12-17 with autism and found a shortage of coordinated, appropriate and affordable support services.
“Their disability is very hard to see,” she said.
At school their peers honed in on their weaknesses such as sensitivity to noise and crowds, Dr Costley said.
One boy was struggling with his lessons because between each class he had to visit his locker which was on the bottom row.
“He had other kids standing over his head banging the doors and found it very stressful between lessons,’ she said.
The problem was solved by moving his locker to the top row.
Only 54 per cent of autism sufferers with an IQ over 70 are in paid employment and the study says this will continue unless more support is given to students while they are still at school.
Not-for-profit service provider Autism Spectrum Australia wants more funding to train teachers and schools how to deal with students with autism.
“There is plenty of evidence that programs supporting adolescents through the transition from school into the workforce provide tangible benefits for individuals with Autism Spectrum Disorder, the service group says.
There should also be peer group education to reduce bullying, Dr Costley says..
More than 230,000 Australians have autism – a lifelong disability that makes it difficult for sufferers to engage in social interaction, communicate and leaves them with repetitive interests and behaviours.
“Many disabled children fail to reach their full potential because they continue to be marginalized in schools, health and social care, according to new research funded by the Economic and Social Research Council (ESRC).
“We found that disabled children often experience discrimination, exclusion and even violence,” say Professor Dan Goodley and Dr Katherine Runswick-Cole, who implemented the study at the Manchester Metropolitan University. “The biggest barriers they meet are the attitudes of other people and widespread forms of institutional discrimination.”
“Disabled children are seldom allowed to play and act like other children because of concerns about their ‘leaky and unruly’ bodies. But our study shows that many children who don’t fit the narrow definition of ‘normal’ have untapped reserves of potential and high aspirations which can be fulfilled when their families receive effective support. There are also many amazing families who should be celebrated for the way they fight for their children.” continues Professor Goodley.
The aim of the Does Every Child Matter, post Blair? project was to find out what life is like for disabled children and young people in the context of policy changes set in motion by the New Labour Government after 1997. The Aiming High for Disabled Children policy agenda was intended to enable disabled children to be ‘healthy’, ‘stay safe’, ‘enjoy and achieve’, ‘make a positive contribution’ and ‘achieve economic well-being’.
The findings, which are based on a series of interviews with disabled children and their families, reveal numerous barriers to these goals, for example:
The researchers call for a change of attitude towards disability so that diversity is not only valued, but promoted. “There is an ‘epidemic’ of labelling children as disabled,” Professor Goodley and Dr Runswick-Cole warn. “Parents are repeatedly under pressure to talk about what their children can’t do in order to access services and support, but sometimes the label can obscure the individual. Families should be asked what support their child requires, not what is the ‘matter’ with him or her.”
Their report recommends that policy should prioritize enabling disabled children to break down barriers by supporting their participation in education, the arts, leisure and their communities and by meeting their communication requirements. “We need to re-think the culture of individualism and performance which pushes disabled children out” continue the researchers. “Pressures on schools are getting worse. We found a case where parents of non-disabled children petitioned to exclude a disabled child. What does this say about the meaning of education and community?”
The study found that bullying is often accepted as inevitable when disabled children are perceived as vulnerable. There were several layers of violence, from manhandling in school to psychological bullying, which often goes unnoticed by adults. Some children do however stand up to bullies and refuse to be limited by labels that are imposed upon them.
One young person insisted on attending Brownies meetings alone, despite health and safety rules that required her mother to accompany her. “Kids seem to enjoy challenging people’s expectations about their limitations,” the researchers commented.”
Originally sourced from http://www.esrc.ac.uk/news-and-events/press-releases/18605/disabled-children-do-matter.aspx
After my ex-husband and I separated he began dating other women.
As is his absolute right to do so.
After 6 months or so he found a lovely woman whom he settled down with.
Everything was going great and my daughter adored her.
A few months into their relationship my ex’s new partner became pregnant and they moved in together.
Once again, absolutely nothing wrong with that.
My daughter became naturally excited about the pregnancy and the thought of having a new sibling to play with.
Her excitement was encouraged by both my ex and his partner and the new baby was literally all she could talk about.
However, less than 6 months after the new baby girl was born, my ex and his partner broke up and she naturally moved out of the house with her baby.
My daughter was devastated by it all but still had contact with her baby sister every second weekend during visitation.
These visits however became fewer and father between.
Eventually my ex-husband decided to stop seeing his new baby girl all together as he said that “it was easier for him to move on without the reminder of another failed relationship.”
However his decision to cut all ties to his new daughter, also meant that my daughter lost all ability to see her sister.
This happened over 5 years ago and during that time my daughter has become increasingly obsessed with finding and gaining access to her sister.
And when I say obsessed, I really do mean obsessed as in utterly fixated.
She has asked her father numerous times to resume contact with his other daughter but each and every time she does so, her father simply says, “No. I’m not going to do that.”
Now my daughter has Asperger’s Syndrome, so to her, being told a simple NO without an accompanying explanation, to such a complex situation, is pretty much a sin.
In short, my daughter simply cannot accept that she may never see her sister again.
She talks about her every day.
It’s to the point now where she’s even changed her Facebook name so that her sister’s name appears on her Facebook page as her own middle name.
Despite all of this, her father still continues to refuse to make contact with either his ex partner or his other daughter.
As for me, well I feel like I’m in a catch 22 situation.
I mean really, whatever went on between my ex-husband and his ex-partner has nothing what so ever to do with me and I have absolutely no desire to know the in’s and outs’ of it all.
But at the same time, I don’t know how I’m supposed to sit quietly by, while my daughter tares herself apart over a sister she’s been prevented from having anything to do with, all because two grown adults refuse to recognize the harm they’re ignorance is causing her.
Help….. What should I do?
Stay out of it all and keep my mouth shut?
Do half siblings even have any rights in regards to being able to see each other?
We’ve all seen the well known puzzle piece image that has come to represent “Autism Awareness”.
Have you ever wondered why a puzzle piece? A quick Google search will give you the basic reason. Most agree that it represents the idea that Autism is a puzzle that people are trying to solve. The sentiment is packaged in various politically correct sounding versions, but it basically boils down to the belief that Autism is a complex mystery that needs to be pieced together for the benefit of Autistic people. Here at Parenting Autistic Children with Love and Acceptance we’d like to disagree. Here’s why:
Autism Speaks uses a puzzle piece and the phrase “Piece by Piece” as part of their fundraising push. They then take the money they raise as a not for profit organisation and spend around 4% of it on actually supporting Autistic people and 44% of it on “research into the causes, prevention, treatments and a cure for autism”. (figures on AS financials sourced at http://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf)
Autistic people and their Allies find this offensive.
Aside from the obvious objection to wanting AS to find a cure for Autism, here are what some people have said about the puzzle piece logo.
Tim from Both Hands and a Flashlight says,
“If someone thought a puzzle piece was an accurate representation of me, I’d be pretty ticked off to put it mildly……
“Perhaps it’s because I think the puzzle piece symbol is all about us (parents, family, friends, medical professionals, educators, researchers, etc.) and not at all about people who are autistic. I’m really starting to question whether this is not a symbol of autism but instead a symbol of our own fears and uncertainties. I wonder if we’re the ones with the missing puzzle piece and whether we’ll ever feel at peace with ourselves until we figure out where to look.”
CS Wyatt from The Autistic Me says,
“Autistic individuals are puzzles? They are distorted, psychedelic minds? Exactly what is the message? Not that all people aren’t puzzles, but to think one group is any more puzzling is a curious claim. How does this promote understanding? The claim that we are all part of the greater puzzle… no, a puzzle is a mystery. The message to me that autism and autistic people are strange, mysterious.
I wish there were other symbols, less reductive symbols, for autism awareness. Puzzle pieces are simply offensive.”
Rachel Cohen-Rottenberg says,
“A puzzle suggests the idea that there might be some pieces missing. Of course, such an idea is anathema to me, when applied to any person on the planet. The only way in which you could look at a person and see pieces missing is if you begin with a preconceived notion of what a person is supposed to look like. If the person doesn’t fit that preconceived picture in your mind, then you see all kinds of gaps. But if you see the person for himself or herself, and accept the person as a given, without reference to an outside standard, then the picture becomes whole. The person is simply a person, on his or her own terms—nothing more and nothing less.
“A non-autistic person says that the world of an autistic person is a puzzle. That statement is taken as objective truth by most non-autistic people. In fact, it is irrefutable evidence that the person speaking is “normal” and that the person being spoken of has a “disorder.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Yes, you’re right. Poor thing. He certainly is a puzzle!”
An autistic person says that the world of neurotypical people is a puzzle. That statement is taken as a purely subjective perception by most non-autistic people. In fact, it is irrefutable evidence that the person speaking has a “disorder” and that the people being spoken of are “normal.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Poor thing. He’s so impaired. He just doesn’t understand us.””
Hopefully you are starting to understand why Autistic people find the puzzle piece offensive. If you need to read more please visit “Unpuzzled” at www.unpuzzled.net
I must admit that the perspectives within this article make a lot of sense to me. What do you think?