Autism Reality

Autism Presents Daily Challenges for Parents

The following excerpt from the Lake Sun article on the daily challenges faced by parents in living with their child’s autism illustrates that one of the old problems – parents concerns being brushed aside by doctors and pediatricians – is still occurring and still costing the children involved valuable time when they could be receiving active intervention. For intervention the earlier the better. But this valuable time is squandered when lazy or out of date physicians tell parents they are over reacting – or the old classic – he’s a boy he’ll grow out of it.

Living with autism presents daily challenges for parents

By Deanna Wheeler/Lake Sun

Published: Monday, April 30, 2007 12:16 AM CDT

TUSCUMBIA – Amanda Phillips knew something was wrong with her son, Owen, when he was 16 months old. Looking back, she describes the symptoms generally. First it was the tip-toe walking, then he flapped his hands and arms a lot, and finally, it was the loss of the few words he did know.

‘Looking back now, I can’t even pinpoint when he stopped talking. I just remember thinking, ‘He’s not saying any new words. He’s not even really saying the old words,” she said. ‘I brought up autism to his pediatrician because every time I typed in those symptoms in a search engine on the Internet, everything that came up was leading to autism sites.’

The pediatrician brushed off Phillips’ concerns as an over-reactive parent, but Owen’s symptoms did not improve. By age 2, Owen still was not talking and at 27 months, Amanda got the diagnosis – autism.

‘You know, it really wasn’t a surprise,’ Amanda said. ‘You still have that hope that the doctor will tell you he’s fine, but I knew. I knew all along.’ … Owen is non-verbal. The few words he once knew, he has never spoken again. About 25-30 percent of children with autism say some words at 12-18 months, but lose them, according to the Department of Health and Human Services Centers for Disease Control and Prevention’s Web site.

Another 40 percent of children with autism do not talk at all. Others with autism have relatively good verbal skills. Some may be able to speak, but not form words into meaningful sentences; others may repeat the same phrase over and over again.

Another common problem in autism is social skills. ……..

http://www.lakesunleader.com/articles/2007/04/30/news/01.txt

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April 30, 2007 Posted by | autism awareness, autism diagnosis, autism disorder, autism treatment, parents, pediatricians | 2 Comments

Autism Reality – Joy and Broken Windows




Parents seeking to better the lives of their autistic children must overcome many obstacles including prejudice and ignorance of those who blame them for their children’s behaviour. Bettleheim’s twisted theories no longer prevail, at least not openly. But as a lawyer I have advocated for families whose parenting skills in raising their autistic children are questioned by family service and child welfare bureaucrats with no real experience or knowledge of autism or what it means to raise an autistic child. In the everyday world some strangers will still look on disapprovingly when your child engages in public tantrum or other “odd” behaviour.

A further obstacle arises from those who should know better, the few parents of autistic children and some high functioning autistic adults, who glorify autism; presenting it as a positive even superior aspect of the human condition. These “posautive”, or “neurodiversity” advocates react with outrage when other parents try to present the whole truth about autism. They reacted angrily, and shamefully, when parents in the Autism Every Day video told their stories. These brave and caring parents were accused of staging scenes for the video and mocked as engaged in self pity parties. All because they told the world the truth about their children’s autism.

Parents do not need self appointed internet autism experts from afar to tell them to find joy in their children. Nor do we need them to falsely tell the world that autism is all joy and wonder. It is not. Autism is a serious neurological disorder and the realities of life for autistic persons, particularly severely autistic persons, and their families can be hard. Parent advocates do not need sympathy or pity from the “posautive” crowd. Nor do we need their support. What would help is if they ceased creating a false picture of the reality of autism – as experienced by many autistic persons and their families.

The photos above portray the joy of living with my severely autistic son Conor, age 11 – a quiet moment with Nanny, some roughhousing fun time with Dad. But the third picture is that of a window broken by Conor this past Friday, broken with his hand as he rushed from one end of the house to the other. He cut his hand, though not seriously. The window was replaced (with car windshield type glass). But the fact remains that he could have hurt himself badly. And the fact remains that danger and injury are ever present realities that have to be contemplated much more frequently with our autistic son then with his brother who is not autistic. And it does become expensive repairing and replacing. My son’s life experiences and prospects are not the same as the high functioning internet essay writers. His will be a life being cared for by others. After I am deceased I will not be able to fight for him or otherwise ensure that his best interests are respected. Conor is a joy, a great and tremendous joy, to our family. That is why we fight for his best interests now against immovable bureaucracies and against the false pictures of autism painted by internet autism glorifiers who do my son no favours with their false pictures.

April 29, 2007 Posted by | autism awareness, autism disorder, autism every day, autism reality, Conor, high funcitioning autism, neurodiversity | 3 Comments

Autism Connections Fredericton Opening – April 30 2007

Everyone in the Fredericton area with an interest in autism is encouraged to come out and support Autism Connections Fredericton and the cause of autism.

Premier Shawn Graham and Fredericton MP Andy Scott are scheduled to attend the opening of Autism Connections Fredericton.

April 30 2007

1666 Lincoln Road
Fredericton NB
4-6pm
Ribbon Cutting 4:30pm

Email: acf@nb.aibn.com

April 28, 2007 Posted by | autism awareness, Autism Connections Fredericton, autism disorder | Leave a comment

Autism in the UK – Will PM Tony Blair Take Action?



In Canada our Prime Minister Stephen Harper is oblivious to, if not outright hostile to, the needs and interests of autistic children and adults. In the UK though, there is an air of optimism that British Prime Minister Tony Blair intends to act to help the cause of 587,900 people with autism and Asperger’s Syndrome in that nation. Autism is an international health crisis. It will be great to see the UK’s autistic population received better health, education and residential care. Hopefully, if more national leaders take decisive action, Canadian Prime Minister Stephen Harper might also be shamed into action.

http://www.medicalnewstoday.com/medicalnews.php?newsid=69245


UK Autism On Prime Minister Tony Blair’s Legacy Agenda

Main Category: Autism News

Article Date: 27 Apr 2007 – 14:00 PDT

The needs of the 587,900 people with autism and Asperger’s Syndrome went straight up the political agenda when Prime Minister Tony Blair met with autism campaigner Ivan Corea and Lee Scott MP for Ilford North in the Prime Minister’s Office in the House of Commons on Wednesday 25th April.

Autism is on the legacy agenda of Tony Blair who leaves office in the summer. Ivan Corea of the Autism Awareness Campaign UK presented the Prime Minister with The Autism Report calling for an urgent review of autism services for parents, carers and people with autism – the report highlighted the crying needs of people with autism in education, health,specialist speech therapy and respite care across the United Kingdom.

The Autism Awareness Campaign UK was set up in 2000 by parents and carers Ivan and Charika Corea who have a 11 year old son, Charin who has autism spectrum disorder. Since then they have been campaigning for better public services for all people with autism and Asperger’s Syndrome. The Autism Awareness Campaign UK has called on the Prime Minister to launch a 10 year program of action and a national strategy on autism.

The call for an urgent review of autism services was backed by three leading figures of the charity world in the United Kingdom: Dame Stephanie Shirley Chair of Autism Speaks and The Shirley Foundation, Colin Headley, Chief Executive of the Disabilities Trust and Julie Spencer-Cingoz Chief Executive of the British Institute of Brain Injured Children. Several community organisations and organisations from faith communities also supported the need for a review.

A copy of the National Autistic Society’s Make School Make Sense Campaign was also presented to the Prime Minister by Lee Scott MP.

Lee Scott, the leading parliamentarian, is championing the cause of autism in the House of Commons.Scott launched a landmark debate on autism in Westminster Hall on 7th March this year. It is now regarded as one of the most important debates on autism in parliament – he also quizzed Tony Blair on autism in Prime Minister’s Questions (PMQs) on 21st March. Scott has given real impetus to the autism debate in Westminster.

Ivan Corea discussed the need for a 10 year program of action with the Prime Minister – The Autism Awareness Campaign UK are calling on the on the British Government to undertake a 10 year program of building specialist autism schools, building autism units in mainstream primary and secondary schools, tackle the failure of some secondary schools in bringing in educational strategies to deal with autistic children in a mainstream setting, access to further education and higher education, labour market opportunities for people with autism and to tackle the whole question of bullying and autistic children, the provision of recreational activities for autistic children. There is an urgent need for ring fenced funding for autism services in the UK.

Autism Campaigners are also calling on the Government to launch data a collection program across the UK to determine the exact number of people with autism. Campaigners are unsure if there is proper data collection across the UK to determine exact numbers of adults and children with autism and Asperger’s Syndrome.

Downing Street featured autism on the Prime Minister’s website, immediately after the high level meeting with Tony Blair in the House of Commons:

http://www.number-10.gov.uk/output/Page11529.asp

PM praised for speaking out on autism

25 April 2007

Ivan, Charika and Charin Corea A campaigner who represents the rights of people with autism met with Tony Blair in Parliament today.

Ivan Corea, Chair of the Autism Awareness Campaign UK, wanted to thank the Prime Minister for helping to bring the disorder into the public eye.

Autistic spectrum disorders are estimated to touch the lives of over 500,000 families throughout the UK.

After meeting with the PM and presenting him with a report requesting an urgent review of autism services for parents and carers, Mr Corea said:

“Tony Blair is the first sitting Prime Minister in living history ever to talk about autism in the House of Commons and outside parliament.

“I would like to commend the Prime Minister for having the courage of his convictions for speaking out on autism.”

The Autism Awareness Campaign UK was set up in 2000 to lobby for better public services for parents, carers and all people with autism and Asperger’s Syndrome.

Ivan and his wife Charika paid tribute to the inspiration behind their tireless campaign – their 11-year-old son Charin who has the disorder.

“Charin has been such a blessing, we marvel at the way that he has become an overcomer, rising above the barriers and the label.”

April 28, 2007 Posted by | autism awareness, autism disorder, Autism Report, Lee Scott, Stephen Harper, Tony Blair, United Kingdom | Leave a comment

Autism : Irish Protest Failure to Fund ABA Schools for Autistic Persons


New Brunswick and other Atlantic Provinces have strong historical ties to Ireland as many of our citizens arrived here escaping the destitution of mid-19th Century Ireland. Their descendants, including the occasional autism blogger, form a significant part of the local population today. We also have in common a reluctance on the part of government decision makers are to take the necessary action to provide needed ABA based educational instruction to autistic persons.

Autism protesters slam funding of specialist education

Several hundred parents and supporters have protested outside Leinster House over the Government’s failure to properly fund applied behavioural analysis schools for autistic persons.

Three hundred and forty-seven black balloons, one for each child currently on waiting lists for ABA schools, were released into the air outside the main gates of Leinster House.

Irish Autism Action spokesperson, Mark De Silvo, said the Government is out of touch when it comes to education for those with autism.

http://tinyurl.com/33728l

April 27, 2007 Posted by | aba, applied behavioral analysis, autism advocacy, autism disorder, autism education, autism protest, Ireland, Irish Autism Action, Mark De Silvo | Leave a comment

Autism Meeting – Andy Scott Peter Stoffer Meet with Greg Peters and Leo Hayes Political Science Students


Andy Scott, M.P. for Fredericton (LIB) and Peter Stoffer, M.P. for
Sackville-Eastern Shore (NDP) had a one hour question and answer
session with Leo Hayes students April 25, 2007. They discussed the adoption of
Private Member’s Motion M-172 , the Harper Government’s failure to
provide funding for a National Autism Strategy in the recent budget and the
need for students to continue lobbying the Conservatives to make the necessary
investments to improve the lives of hundreds of Canadian children and
their families.

The federal MP’s expressed their sincere thanks to Grade 12 political
science teacher Greg Peters and his students from 2006-07 for their
work in developing the Private Members Motion and following it through the
entire process when it was voted on in the House of Commons.

The Atlantic MP’s encouraged the students, as they move on in their
lives,to remain active in pressing the government to make the necessary
investments. They suggested the students can develop a petition that
can be presented in Parliament, write Letters to the Editor in newspapers,
phone in to radio and television talk-shows, and more importantly contact
Members of Parliament registering their disappointment with
government’s decision not to include it in the federal budget and
underscore that they are voters and will be watching closely for
dedicated funding for a National Autism Strategy in the next budget.

April 26, 2007 Posted by | shdopkpd | Leave a comment

Autism Therapy Must Be Funded

Fredericton’s Daily Gleaner has long been supportive of the cause of autism in New Brunswick and once again it has stepped up to the plate with an editorial calling on the Liberal government of Shawn Graham to fund autism therapy past the current 5 year age cut off and into the school years. Not just because Premier Shawn Graham promised to train 100 TA’s and Resource teachers a year at the UNB-CEL Autism Intervention Training program but also because it is a good investment which will defray the costs to society of additional care for autistic children as they age and costs incurred by the stresses leading to marital breakdown. The Gleaner has offered sound advice. Hopefully, Premier Shawn Graham will heed such advice and honor the commitment he made as part of his campaign to become Premier.

Autism therapy must be funded

Published Wednesday April 25th, 2007
Appeared on page B7

Parents of autistic children are in a race against time. It’s a race in which they are heavily handicapped with too many burdens to carry, too much worry on their shoulders and far too many roles to fulfill.

They must be not just mother, father and all the chauffeuring, chefing, cleaning, dressing and boo boo-kissing that entails but also teacher, social co-ordinator, mentor and the many other functions needed to help their autistic child cope.

And as the province has failed to fulfill its promise of funding training for support workers for autistic children, parents must also play the part of fundraiser to pay for the special treatment that can literally change an autistic child’s life.

The Liberal government promised to pay for autism intervention training for 100 teacher’s assistants and resource teachers a year for four years. That would help autistic children have a chance at working with a specially trained teacher’s assistant.

Currently, applied behavioural analysis intervention therapy is the most popular and successful therapy for autistic children. It’s a program of intense therapy which, when started early on, can help autistic children reach their full potential.

The government funds the therapy for pre-school age children, but once the child enters kindergarten, the funding stops.

And then there is nothing.

So desperate parents struggle to pay for the therapy which can cost more than $50,000 a year. And that means holding benefit dances and any other fund-raising event they can think of on top of all their other tasks.

Election promises aside, funding this therapy is a good investment. Autistic children who grows up to be severely autistic adults not only have a low quality of life, they cost the system more money. Helping autistic children reach their full potential, translates to autistic adults who will be better able to care for themselves.

Doing whatever is necessary to support parents of autistic children is also a good investment. When parents are exhausted and stretched to their limit, the whole family suffers. Marriages break down, other children come off the rails, some drop out of school. There’s a whole slew of expensive problems that go with family breakdown.

Among the Liberal government’s election promises was a little one about self-sufficiency, one that’s getting all the attention. But if we are not all on the road to self-sufficiency — and that includes autistic children — none of us will get there.

April 25, 2007 Posted by | Applied Behavioural Analysis, autism awareness, autism disorder, Daily Gleaner, election promise, Premier Shawn Graham, UNB-CEL Autism Intervention Training Program | 2 Comments

Autism Is A Global Health Crisis – Suzanne Wright

Founder of Autism Speaks, Suzanne Wright, along with Priscilla Natkins and Andy Shih
Gulf Times Newspaper

Suzanne Wright and Autism Speaks are raising autism awareness around the globe. The information presented in the following article is basic and to the point. Autism is not a literary metaphor or a different cultural viewpoint, it is a neurological disorder characterized by a range of very serious deficits. Children with autism can be aided immensely by behavioral interventions. But parents and professionals have to understand this point and act promptly and decisively. Autism awareness, not misleading rhetoric, is critical to helping autistic children whatever their country of residence.


Autism is a global health crisis: expert
Published: Wednesday, 25 April, 2007, 08:43 AM Doha Time

Staff Reporter
AUTISM strikes without any discrimination of ethnicity, class, geography, gender or race, said Autism Speaks’ founder, Suzanne Wright, yesterday during the Second Annual International Forum on Children with Special Needs in the Shafallah Center.
Also speaking on the occasion were Ad Council’s executive vice president and director of client services, Priscilla Natkins and Autism Speaks’s chief science officer, Andy Shih.
Referring to autism as ‘an urgent global health crisis,’ Wright said that this fast growing, serious developmental disorder, has become an epidemic which is found in one of every 166 children in the United States.
“Though the causes are unknown, it can spread worldwide without any discrimination,” she explained.
The session, on the urgency of bringing Autism epidemic awareness through public service advertising, began by screening a documentary entitiled, ‘Autism everyday’.
The daily lives of eight autistic children were screened, along with their parents’ apprehensions. The children, all above three to four years, required constant attention and were seen restless.
The main symptom was ‘stimming’, a repetitive body movement that self-stimulates one or more senses in a regulated manner, some of them, being grinding teeth, jumping on toes, head banging and scratching. The child makes absolutely no eye contact and many of them stopped speaking after a particular age. Simple tasks like dressing, brushing and eating by themselves took hours and a mother agreed to this, saying, “it took me two years to teach my son to put his shirt on”.
There have been instances when a child affected by autism had not slept for two to three weeks.
Researches say that 80% of the time, parents with an autistic child end in a divorce, as they are equally helpless and cannot cope with the emotional, and financial issues.
Some of the measures taken for the care of children diagnosed with autism, are behaviour therapy, music therapy, physiotherapy and speech therapy, most of which are done at home.
The parents were apprehensive, as these treatments were expensive – as high as $100 per hour.
Suzanne Wright, who herself has an autistic grandson, Criston, said that grandparents also play an extraordinary role in the care of autistic children. She exhorted that they should provide support to their children to raise the diagnosed child.
Wright said that autism can be diagnosed when children do not exactly meet their milestones, or meet them at an unusually early time, such as sitting up before six months and walking before 10 months.
Wright said that raising awareness was the corner stone of her mission.
Priscilla Natkins spoke about the role of media and and the effective public service campaigns that were raised. Some of the advertisements screened urged the audience to know more about autism, through their website.
The campaigns launched have successfully increased parental knowledge. It was said that the earlier the awareness, the earlier intervention will help. The advertisement council relied on pro bono services from advertising agencies and the media.
The target audience was parents of newborn, and the secondary target being doctors and health care professionals.
Andy Shih, spoke about the research they in this field. He also talked about the importance of scientists all over the world linking and working together to find a cure for this neurological disorder.

http://tinyurl.com/37853z

April 25, 2007 Posted by | autism awarness, autism crisis, autism disorder, autism speaks, Gulf Times, Qatar, Suzanne Wright | Leave a comment

The Vancouver Sun is continuing its excellent six…


The Vancouver Sun is continuing its excellent six part series on autism with an article on early signs of autism in toddlers. One of the items listed in the article that we noted when Conor was young (there were several causes for concern early on with Conor) was a failure to play peek-a-boo at any point as a toddler. ( We did not know about autism we were just concerned ). A big one was his failure to learn to say mommy, daddy and other basic words. He also used to play for loooong periods of time sifting sand. He would hold one of those small toy plastic basket balls in his hand for hours. We have several pictures of him asleep in the car seat his hand grasping one of the primary colored plastic basketballs. We had an indoor swing set and Conor would lay with his face pressed firmly into the side of the set. But it was the failure to develop any significant language or show any substantial recognition of mom and dad that led us to seek medical attention for Conor and ultimately led to his initial diagnosis of PDD-NOS which was subsequently changed to Autism Disorder.

The signs of autism in toddlers
Vancouver Sun

A decade ago, autism diagnosticians developed CHAT — the Checklist for Autism in Toddlers, designed to flag symptoms of autistic behaviour.

If the majority of answers to the questions are ‘no’ it is suggested parents talk with their family doctor or pediatrician. Here they are:

Does your child enjoy playing word/action games with others, such as peek-a-boo?

Does your child show emotions that fit the situation?

Is your child interested in what’s going on around him or her?

Does your child enjoy playing with many different toys, in many ways?

Is your child beginning to enjoy pretend play, taking turns and imitating other people’s play?

Is your child interested in approaching other children and joining a group?

Can your child easily indicate his or her interests and needs through words or sounds?

Is your child talking as you would expect?

Does your child point to, ask for, or try to show you something?

Does your child look at you when you talk to him or her?

Does your child imitate words or sounds?

Does your child imitate gestures and facial expressions?

Is your child comfortable with changes in routine?

Does your child hear and react to sound as you would expect?

Does your child enjoy being touched and touching other things?

Does your child move his or her hands like other children?

Does your child see and react to things as you would expect?

Does your child eat and drink a variety of foods and beverages?

Point to a toy and say, “Look, there’s a ——.” Does your child look in the right direction?

Use two cups and spoons. Invite your child to make juice with you — mix, pour and drink. Does your child participate?

Ask your child to show you something in the room. “Show me the ———— ?” “Where’s the ———— ?” Does your child turn and point or touch the items?

April 24, 2007 Posted by | autism disorder, faces of autism, signs of autism, vancouver sun | 1 Comment

Autism & HBOT – Hyperbaric Oxygen Is NOT An Evidence Based Treatment for Autism


I have blogged previously on Hpyerbaric Oxygent Treatment as a treatment for autism. At this point in time HBOT is NOT considered to be an evidence based treatment for autism. There is a study going on which MAY or MAY NOT change that fact but for the present, as the authorities reviewed in the Chicago Tribune indicate, there is NO evidence to support the effectiveness of HBOT in treating autism.

http://tinyurl.com/2apv44

Parents turn to long-shot therapy for autism

By Kirsten Scharnberg
Tribune national correspondent
Published April 23, 2007, 7:48 PM CDT

HONOLULU — Kalma Wong has tried almost everything for her two autistic children: special diets, intense behavioral therapies, flying in experts from the U.S. mainland at exorbitant costs.

Some efforts have yielded modest success. Others have done next to nothing.

But like many other parents of the more than 500,000 children that the Centers for Disease Control estimates to be autistic in the U.S., Wong has vowed to keep trying until she pinpoints the treatment that most helps her kids.

Her latest attempt is one of the most long-shot therapies yet, a protocol some doctors praise but that others declare to be a waste of time that gives desperate parents false hope and exploits them financially.

It is called hyperbaric oxygen therapy, a treatment in which pure oxygen is delivered to patients confined to pressurized chambers for an hour a day for several weeks. The theory is that the extreme doses of oxygen essentially the same kind of treatment that has been used for decades to cure divers with decompression illness will spur dormant or damaged neurons in the brain to become reinvigorated or even transformed.

In the case of children with autism, considered the fastest-growing developmental disability in the U.S. today, the new treatment is claimed to have produced some stunning results: transforming non-verbal children into fluent speakers; helping children hypersensitive to outside stimuli become calm enough to attend public schools; changing kids once adverse to any personal interaction or touching into affectionate toddlers.

….

Markley said she has treated more than 30 autistic children with HBOT and “every single child of those 33 had consistent quality-of-life improvements.” The improvements, she said, were more pronounced in kids most afflicted by the characteristics of autism: the repetitive behaviors and the impairments in sensory perception, social interaction and communication.

Critics argue that no studies have been done that use scientific models such a double-blind testing. They caution that the treatment has been tried only on a handful of children affected with autism nationwide, not nearly enough to draw valid conclusions.

“They are making extraordinary claims without extraordinary evidence,” Iyama said.

Evidence is exactly what supporters of HBOT are hoping to get in the coming months. Beginning in May, the Honolulu clinic, along with some 20 hyperbaric oxygen clinics across the U.S., will launch a formal study into how autistic children respond to the therapy. A total of about 400 children will be included, and the results are to be evaluated by the National Institutes for Health.

Other studies are under way that HBOT proponents are closely watching. One of the biggest is a federally funded study on the effects of HBOT on children with cerebral palsy that is under way at Wright-Patterson Air Force Base in Dayton, Ohio.

One group watching the outcomes of these studies is the Undersea and Hyperbaric Medical Society, a non-profit group of doctors that investigates scientific claims linked to HBOT. Thus far the group has been skeptical of using HBOT to help neurological conditions such as autism or cerebral palsy.

“If we just had the evidence we’d be happy to support it. But it just isn’t there,” Dr. Donald Chandler, executive director of the UHMS, has said in statements regarding the therapy….

April 24, 2007 Posted by | autism treatment, Chicago Tribune, evidence based treatment, HBOT, Hyperbarid Oxygen Treatment, parents | 3 Comments