The April is Autism Awareness Month and 2nd April 2010 marks World Autism Awareness Day, an unprecedented global effort to heighten awareness about a disorder affecting about 67 Million families globally. Whilst we celebrate the rights and acknowledge people with Autism today, Governments support for people with Autism is extremely disappointing. International leaders have shown the public commitment to change the world of Autism.
More children will be diagnosed with Autism this year than with Diabetes, Cancer and AIDS combined. our aim is to create meaningful awareness and raise the necessary funding to provide services to children and adults with Autism that so desperately require our help and support.
Autism: “As a father and grandfather, I want to see more UN involvement” – Ban Ki-Moon (UN Secretary General)
What’s the reality in South Africa?
Government continues to discriminate against the basic human rights for people with Autism. The South African Government has not acknowledge the existence World Autism Awareness Day!
In South Africa, organisations, service providers, schools, families live with Autism on a daily basis with very limited to no funding from Government Departments. How long can the south African Government ignore the plight from parents and the United Nations to start taking part ownership of Autism in South Africa?
Dear President Zuma, I urge you to acknowledge and respect the rights of people with Autism Spectrum Disorder in South Africa. I further more request you to publicly pledge your personal support and motivate your Department to work in partnership with current service providers to create a better life for people with Autism and their families in South Africa.
Autism: “I deserve acceptance and respect as I am”
I suppose it’s a start with Government publishing an official acknowledgment of World Autism Awareness Day. Is this to be politically correct or is there any intention to do something about Autism in South Africa?
I hash tagged #102010 because of the significance of October 2010 in the life of my family. I learned from Round Table to “Adopt, Adapt, Improve” which has pretty much become my philosophy in life.
10 years ago Kendall our daughter was diagnosed with severe Autism, which was a pretty devastating time in our life. As a family we “adopted” this challenge as a family when we soon realised that there are very limited services available for children with Autism in South Africa.
We had to “Adapt” our life to the change and it was difficult when we realised that Kendall will always be dependent on us as her only support structure in her life. We invested our lives into ensuring that Kendall gets the best. This meant that we lost every thing we owned. I remember times of tutors buying us a bag of potatoes as only food in the house & walking to the shop with a plastic bag with bottles to get money for petrol. This we did based on “emotional blackmail” by private service providers, for gain & hiding behind religion, who casually made statements like: “she will talk within 6 months and will start in a normal school, all you have to do is…” Which naive parent wouldn’t give their life for their children.
We have lived Autism for the last 10 years trying to “improve” the life of other families sharing a lifestyle with Autism. In certain areas we failed horribly, but I feel that we have made a difference even if it’s a very small one.
October 2010 my family will “Adopt” the English lifestyle in the UK. I love South Africa with every drop of blood, however I need to look at what’s in the best interest of my family. I hope that what I have learned I will be able to contribute in a country where Government cares about it’s people, if they will have me.
We will be working our butt’s off until October, with some BIG changes about to happen which will change the face of Autism in South Africa, starting in April (Autism Awareness Month) and World Autism Awareness Day 2 April 2010.
Please “adopt” Autism to help us to “adapt and improve” the lives of people with Autism in South Africa.
“There is nothing magical about change, it is getting up of your ass and caring enough to take the first step to contribute to change on an issue you care about.” – Jody Williams – Nobel Prize Winner – 1997
Proudly South African Ernie Els to Receive GWAA‘s Bartlett Award
Ernie Els is one of the most successful golfers in the history of the game, having won more than 60 professional tournaments, including two US Opens, an Open Championship, and a record seven World Matchplay titles. The international scope of his victories is second to none. He is one of golf’s truly global players.
Ernie was born in South Africa on 17th October 1969. As a youngster, he was outstanding in soccer, cricket, rugby and tennis. At the age of 14 played off a scratch handicap, not bad for a boy from the East Rand in Johannesburg South Africa. His towering 6ft frame and gentle personality earned him the nick name “The BIG easy”
His classic, powerful golf swing is universally admired, and aspired to, from both sides of the ropes. And while his easy-going nature masks a fierce competitive drive, it is all of these qualities, along with an engaging on-course persona, that have helped make Ernie one of the most popular golfers in the game today. Now Ernie is one of the most respected golfers, for facing one of the biggest challenges of his life with the introduction of Autism into his family and speaking publicly about it in 2008 for the first time.
“Liezl and I are private people, but we are also very much in the public eye and we recognise that this gives us a platform to help raise funds and awareness for the causes of Autism and its possible treatments. It is something that we both feel very passionate about” said Els
He and wife Liezl founded the Els Autism Foundation in 2009 supporting Autism internationally and also in South Africa which will always be his home.
The award, named for the first secretary of the GWAA, is given to a professional golfer for his/her unselfish contributions to the betterment of society. Els will be honored at the GWAA Annual Awards Dinner April 7 in Augusta, Ga. Els follows Tiger Woods (2007), Greg Norman (2008) and Jack Nicklaus (2009) in receiving the Bartlett Award. Former GWAA President and chairman of the Bartlett committee, Tim Rosaforte, said Els “epitomizes the spirit of the award”
“Years from now people may remember me as a golfer and a major champion. But I’d like also to be remembered as somebody who took the issue of Autism and did something with it. The rest of my life, I’ll be fighting this thing…I hope you’ll join with me.”
I cannot sit day in and day out listening to all the bullshit from Political Parties and Government alike. It’s time to take a stand against the discrimination against Individuals with Autism in South Africa.
More children will be diagnosed with Autism this year than with Diabetes, Cancer and AIDS combined. Current world ASD population is estimated at 67 Million people, with South Africa estimated at about 600 000 Individuals with Autism.
The Jonas Brothers supports Autism in America:
How can the South African Government ignore the epidemic?
For the last 7 years we have been playing by the rules and regulations of the Departments of Health, Social Development and Education, with very little impact. The Department of Health has negated on their commitment to take care of adults with Autism in South Africa against the grain of what the Department of Health stands for:
In order to improve the quality of health care for everyone in the Western Cape, the Department of Health has committed itself to a long-term strategic plan called Healthcare 2010. This plan aims to reshape public health services in the Western Cape to focus on primary-level services, community-based care and preventative care.
Mission
Our mission is to improve the health of people in the Western Cape and beyond, by ensuring the provision of a balanced health care system, in partnership with stakeholders, within the context of optimal socio-economic development.
Vision
“Equal access to quality care”
The Department remains committed to the vision of providing better health care to communities. The vision of Healthcare 2010, “Equal access to quality care”, has become increasingly significant and consideration is being given to making this the vision statement of the Department as a whole. This vision statement is more consistent with the Departments central goals of accessibility, appropriateness, affordability, equity, effectiveness and efficiency.
One of our projects, named Hurdy Gurdy House has been in existence since 2001, providing a 24/7/365 home for 10 individuals on the Autism Spectrum presenting challenging and aggressive behaviour. The residents cannot be accommodated in any other environment due to the nature of thier difficulties, previously from Alexandra Hospital Psychiatric unit. The residents were moved based on the Dept. Heath’s 2010 Hospital Care plan which dictates the reduction of beds in Government psychiatric hospitals and quality of service provision which is too disgusting to even mention.
3 Years we have submitted funding applications to the Dept. Health Western Cape for financial assistance for the residential care project with very limited or no communication. The lastest application was submitted in Febraury 2009 based on the prescribed procedure.
We submitted reams of paper conforming under the exact format, proving that we need funding to sustain the HGH project or alternatively face the closure of the project as soon as the end of May 2009. We have been following up as a matter of urgency with no joy. Telephonic communication with 7 individual representatives passing the buck resulted in discussion with a lady by the name of Carol Dean & Pat Collis, both requested to put it forward as matter of urgency via e-mail 8 April 2009.
Dear Carol,
Thank you for taking the time for our telephonic discussion. As discussed for the last 2 years we’ve had various discussions regarding funding for Autism Western Cape. Various site visits including Mrs. Marinda Roelofse and Mr Titus and correspondence with Mrs. Pat Collis resulted into our latest application being declined.
The reality is simple, if we do not get funding from your Department we will be forced close Hurdy Gurdy House, currently under the management of Autism Western Cape. We are currently providing 24 hours residential care to 10 residents who cannot be reintegrated to any Government Psychiatric Service based on the Hospital Care Plan 2010.
The project has been running since 2001 and we cannot sustain the existence of the project on our own and parent resources in a very challenging economic environment. Parents are currently contributing R 5000 per month and we cannot increase any fees.
Should we have to close the project your Department will have to take responsibility for the said residents based on the fact that the residents present challenging and aggressive behaviour and CANNOT be incorporated into any other service.
This is a very serious matter, without at least R 300 000 financial support, we will have no choice but to close down the said project by the end of May 2009.
We are currently doing everything in our ability to ensure the existence of the project; however we will not be able to do it with immediate intervention from your Department.
With NO response I attempted again on the 14th April 2009 to establish dialogue:
Dear Carol,
Since my previous mail I have received no correspondence, response or acknowledgement for any of the recipients included in my e-mail dated 8 April 2009.
I have furthermore not received any formal response regarding the application submitted to the Department of Health re funding for Hurdy Gurdy House.
Please advise.
Today I received the formal reply for Pat Collis:
The Metro District Health Services are unable to fund Hurdy Gurdy in this financial year. It is with regret that we are unable to do so. Regards Pat Collis. Should you wish to email me Pcollis@pgwc.gov.za. A formal letter of regret will be sent to your organization.
Sorry not good enough, if you do not have funding available is because you are not competent in your position, because you did not apply to national treasury for budget and how do you justify underspending in your department?
Please tell me what more do I have to do to get the Western Cape Department of Health to take responsibility for the most vulnerable of society?
I have committed to do whatever it takes to make a difference to Autism in South Africa, sitting 74 days in “Jail Cell” :
Jail4Bail
In November 2009 we will be “Putting AUTISM to the TOP – Kilimanjaro”
Putting AUTISM on TOP - Kilimanjaro
WHAT ELSE CAN I DO TO GET THE GOVERNMENT IN SOUTH AFRICA TO TAKE AUTISM SERIOUSLY?
So what has happened since WAAD 2008 Internationally?
Autism became a political ball game internationally. US elect Barack Obama took action , the Government in the UK took action, and one have to ask why? Would it be to gain votes or is it because reality has set in that Autism Spectrum Disorder is currently affecting 67 Million world wide?
What did parents have to say?
Jeanette ODonnell mother of 6 children of which 5 on the Autism Spectrum said:
We will see families struggling for services and education. We will see Jenny McCarthy, yet again, telling us about her knowledge about Autism and “curing”, “recovering”, “almost curing” her son….maybe she will make up her mind this time. She will go head-to-head with prominent doctors about vaccines and Autism…now that will be worth watching.
We will see Larry King massacre the pronunciation of Autism…
We will see families with multiple children saying how difficult their lives are by having so many children with Autism. We will see meltdowns and temper tantrums. We will see tears flowing from the faces of parent’s who envisioned a better future for their children.
What we won’t see is children and adults with Autism actually thriving in our communities. You won’t see that there are children getting better and thriving every day. You won’t see promotions for amazing programs out there that are seeing results from Sensory Integration Therapies and Play Therapies.
You won’t see children with Autism who can go to school, sit quietly and respectfully in a classroom, because they have been inclusioned since 5 years old. You won’t see parent’s who have worked hard with their children and not allowed inappropriate behaviors in public….
Instead, we are going to be subjected to the “gloom and doom” bias of Autism. The Autism that requires a parent to slap a tee shirt on their child and blame their Autism for their behaviors. It is much easier not to parent that way. We are going to get to see mothers and fathers crying about the child they were supposed to have, instead of the glory of the child who is sitting right in front of them.
I think I will celebrate WORLD AUTISM DAY in our home. I will remind my children to be on their best behaviors today…because the WORLD is watching them. I will let them know they are the most wonderful, amazing children in the WORLD and I am so very proud to be their Mother.
Are we missing the point of World Autism Day? Big hype with no action means nothing.
The South African Government up to date has not acknowledged WAAD in any way. Individual private organisations for profit jumps at the opportunity to claim that they recover even state that they cure Autism. These organisations usually target families of newly diagnosed vulnerable families making false promises of recovery to improve their bottom line.
Please understand with appropriate intervention in an multi-disciplinary team dynamic, consisting of a toolbox of acknowledged therapies and interventions most children’s developmental ability will improve significantly .
It leaves me with the burning question? How to participate in World Autism Awareness Day 2 April 2009? What would you do to make a meaningful difference?
Jan Van Riebeeck landed and started invading South Africa so did Autism only 3 centuries later. The evolution of service delivery for IWA’s (Individuals With Autism) started in Cape Town in 1967 with the founding of The Society For Autistic Children – Western Cape (now Autism Western Cape).
I caught up with one of the pioneers of Autism in South Africa who has committed her life to make a difference to so many children and adults affected by Autism. Auntie Maggie (Margaret) Golding, as she is affectionately known, triggered by an particular interest in a ASD, started in 1952. Today she still forms part of the backbone and the evolution of Autism in South Africa.
Short Bio:
Margaret Golding qualified with a broad menu and holistic approach to cater for the unique individual educational needs of each child through the development and implementation of a cohesive educational policy which she is still practising today. Some highlights included the opening of ASD specific schools in the UK in the 60′s and the first ASD specific schools in Cape Town and Pretoria in the early 70′s.
The extremely humble great granny of 3, with her gentle voice and English accent, still fits Yoga, Gardening and cuisine cooking inbetween her travelling where she usually ends up working local or international.
Present involvement includes:
Governor of Vera School – Cape Town
Trustee of Hurdy Gurdy House – Cape Town
Member of the National Executive of Autism SA
Chairperson of Outreach, Education & Training Committee – Autism SA
Honorary member of Autism SA & Autism Western Cape
Keynote Speaker at the World Conference on Autism – Cape Town 2006
Paul Harris Rotary Award
What would you like to see happening in South Africa:
“I would like to see models of good practise being used by Government repeated and implemented for children and adults across the ASD spectrum. Support for learners in the mainstream education system and also for adults including residential homes. Job coaching and vocational support for those who are able to work through learnerships. Government Departments need to become partners and should take ownership by developing a cohesive policy in early childhood development and life long educational processes”
You have some interesting presentations. What is the “Hitchhikers Guide to Autism” about?
The infectiuos passion serves as a motivation to me in persisting with our Aims and Objectives of Autism Western Cape to make a meaningful difference through service delivery.
Thank you for your life commitment to Autism in South Africa.
It is most likely that you reading my blog because Autism affects you in your family or you want to learn a little bit about a subject that keeps on popping up wherever you go .
Welcome to the club, my daughter Kendall was diagnosed with severe ASD at the age 3 years old. Kendall now 12 has very limited verbal communication skills however we understand her “code language” very well. Kendall also presents some bizarre, challenging behavior which makes life interesting most of the time, some days more than others.
Very recently in my daily routine fetching Kendall from School we stopped at the convenience store to pick up a couple of things. I prepared Kendall at school that we are going to “Stop at the shop, to buy milk and bread” to reduce the amount of anxiety associated with change in routine. Daddy and Kendall walk into the shop hand-in-hand too cute until Kendall decided she wants “tweeties”.
Lesson: “We cannot always get Tweeties when we want to”, nothing different to any parenting recipe book.
I thought tantrum here we go, with a queue of about 10 shoppers behind us. Kendall decided to show her disagreement in a different way. Legs spread shoulder width, she let out the loudest fart, which will make any man blush, about 4 on the Richter Scale. Firm, but polite I asked her if she’s finished. I quickly paid for the milk & bread with my face color matching her red T-shirt, whilst listing to the comments behind me.
Receiving my change, with the most vile smell I could imagine, whilst a 2 meter clearing radius allowed us easy exit, out of this smelly situation. You can’t unscramble, scrambled eggs so avoiding any eye contact, we made our great escape, without farting around. I will visit the convenience store again in the future, just not sure when.
I tried to convince myself I am a good parent, being consistent dealing with different behavior and making the best of a shitty situation, without reaction.
People comment “You very special parents to be blessed ith a child with Autism”, Autism a blessing?
Autism becomes a life style, like don’t like it but deal with it, how many choices do you have? Ask about 300 000 families in South Africa. Autism Spectrum Disorder prevalence 1:150, with 4 boys to 1 girl.
OK, so we spammed with commercials luring us to spend our hard earned cash, or credit cards in buying the perfect gift for our loved ones and especially the children. The magic of seeing children’s faces lighting up in anticipation of whats hiding behind the sexy wrapping is priceless, or is it?
Christmas makes me sad. Kendall my 12 year old Autistic daughter don’t share the normal anticipation of gifts. I have seen it too many times when family buying expensive gifts for children like Kendall and get offended by their reaction to the goodwill.
I want to tell a story and hope that we all can learn from it. The names have been changed.
Every year the Adams family get together for Christmas with the same routine. Jimmy’s house on Christmas morning for everybody to open their gifts together and then lunch at Tony’s.
Christmas morning, everybody gathers with the technicolor mache of gifts in all shapes and sizes. All the children have their turn to sit in the special chair to receive and open their gifts. The next door neighbours even got excited by the children’s happiness.
Little Julie (Jimmy’s daughter) is Autistic. She is very interested in the wrapping paper folding it and tearing it, whilst the other children open their gifts.
Then it was Julies turn in the hot spot. Her mom persuaded her to sit in the special chair and handed her the first gift, which she opened. Pretty doll got tossed, however she loved and appreciated the shiny wrapping paper.
Next aunty Jenny’s gift, with an action replay effect which carried on until the rest of the children grabbed some cool toys from the pile of gifts next to her.
Julies baby brother (Jamie) handed her the last gift. Jamie only 6 years old, handed Julie a partially covered shoe box too cute. Everybody wanted to see what he got for his sister. Julie opened with her face of a happy angel. Julie non-verbal jumped up and ran to her bedroom.
Nobody has ever seen Julie so excited. Jamie knew his sister the best. He knew what what was important to her and gave her exactly what she wanted, no expensive gifts, no pretty clothes.
Never have you seen anybody so excited about a shoebox full of newspapers strips.
Lesson: Do we know what makes other people happy or are we guessing?
at the age 3 years old. Kendall now 12 has very limited verbal communication skills however we understand her “code language” very well. Kendall also presents some bizarre, challenging behavior which makes life interesting most of the time, some days more than others.
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