FEAT DAILY NEWSLETTER      Sacramento, California      http://www.feat.org

December 20, 2001         News Morgue Search  www.feat.org/search/news.asp

SEASON’S ONLINE GIVING

·        Appeal: A Helping Hand For Parents of Autistic Children

·        Readers Letters to FEAT Newsletter

·        Reader’s Posts

 

 

[By Helen Rumbelow.]

http://www.thetimes.co.uk/article/0,,61-2001585098,00.html

When Barry Hall took early retirement at 50 it was not with dreams of golf and cruises, but because he was forced to provide full-time care for his adult autistic daughter.

He is not alone, found a new report by the National Autistic Society, which showed that half of adults with autism are looked after at home by their parents.

The effects on families who take on a lifetime’s care are devastating, found the report, with “marriages torn apart, siblings neglected, social lives and holidays destroyed, careers sacrificed.”

Parents who fought gruelling battles to obtain an education for their autistic child find the provisions for adults even worse, said the charity.

The most common fear among nearly 500 families surveyed was what will happen to the child when their parents die. As the condition only began to be properly diagnosed in the last few decades, no one yet knows the enormous impact this problem could have on Britain.

The National Autistic Society desperately needs money to help these families which are left to cope alone.

For Mr Hall, the last four years of full-time care for his daughter Hannah, who will be 23 on New Year’s Eve, have pushed him to the limits of his endurance: “I had to give up work because it became impossible due to the alien environment in which we live as a family. I am the last line of defence between Hannah and the world.”

They failed to find the specialist school Hannah needed when she was young, and they finally took her out of her special needs school seven years ago when they discovered she was being locked in the changing room to contain her behaviour.

Since then Mr Hall and his wife, Shirley, have been Hannah’s carers.  They also look after their 12-year-old grandson at home because their elder son died ten years ago.

An initial assessment by social services decided that the only equipment she needed was a “knife”, because she liked cooking. Mr Hall has battled to provide her with care assistants and talking devices: “It’s still so hard. Last weekend was pure hell, I was up around the clock for two nights, as she became difficult and started to tear the house down.” Linda Green, 46, from South London, knew she might have a similar battle in store when her autistic son John was reaching adulthood. So for a year she fought to find him a place in a specialist residential centre, where he moved this May.

“When your child is at school it is bad enough fighting for the appropriate education, but that goes out the window when they grow up,” she said.

“It was a big step, because lots of parents have nothing when they leave school, but that day when we had to unpack his stuff and leave him with strangers was really awful,” said Mrs Green.

“He got into bed and said ‘see you in the morning’, but we knew that we wouldn’t be there, we were so upset coming home.” Six weeks after he moved into the home, Mrs Green received a call from a social worker saying that Jonathan could not continue there: “John was thrown out of a specialist adult placement after six weeks with nowhere to go, which is extremely worrying. Social services should be better prepared and parents need to be extremely vigilant.”

They collected John and for the rest of the summer were his full-time carers.

“We are virtually isolated. We don’t have anybody who comes to the house, we don’t go out or have a social life. When we do go out, we do what John wants,” she said.

Now, the National Autistic Society has found a day-place for John, who is still recovering from the upheaval.

“We are still in shock over what happened, and we still have to face the future. It sounds sombre, but we always worry about what will happen to him when we’re not here.”

The Times Christmas Appeal is raising money for the National Autistic Society. The society requires £500,000 to run its development team. A donation of £50 (rounded to $75 US) would help to run a parents’ group to allow people such as Linda and Barry to receive the support they need. Make your donations online at www.thetimes.co.uk/appeal Please Forward this to Family and Friends!

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Reader’s Letters to FEAT Newsletter and Other Publications

 

Trivializing Autism Commentary

I am almost sorry that we are not simply using the word autism.  In my practice, the numerous persons I see with Asperger Syndrome struggle as much and often in the very same areas as their peers who have less language.

Unfortunately, many professionals who use the label “high functioing” discount the serious nature of AS.

·        Rachelle Sheely, PhD Connections Center Houston Texas

                                        * *

 

I vote for no label at all.  Every engineer, mathematician, scientist, and computer programmer in the world probably displays some quasi-Asperger characteristics.

These people are not disabled, they don’t need services, so why label them?

·        Cynthia Burgess [foshe.burgess@gte.net]

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The commentary in FEAT said that “the disparaging ‘Geek’ headline is meant to stimulate the interest of their presumably hip and jaded readers.  You can decide if the article makes up for it.”

But then followed it on Mon, Dec 17 with: “COMMENTARY

A Contest to Pin the Label on the Dorky On Not Trivializing Autism” and that

by you is NOT disparaging?

·        Dave, puzzled...

 

 

Reply: The usage of “Dorky” was intended to be a satirical mocking, and therefor a critical commentary on the usage of “Geek”.  Satire, unfortunately has its risks.  Those who do not catch the irony and sarcasm, will only see inconsistency and not be amused. I should have anticipated this.  The fault is with my writing, and not the consistency of my character.

·        Lenny Schafer

 

                                        * *

 

I thoroughly appreciated your having said what needed to be said about the trivialization of autism, not just by Wired but wherever it may be happening.  Needless to say, as a parent of a low functioning autistic, I am terrified of what little money is still available to help real autistics getting taken away by people who are not actually disabled.

I also think there is a great risk of adults who are not disabled but who have problems and are being drawn into diagnosing themselves as autistics as some sort of solution to their problems, or merely even just to gain attention.

·        Kenneth Newman krnewman@power-net.net

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I read your commentary and one thing stood out to me when you mentioned being “disabled.” I would say my older son was definitely PDD before because he was truly non-functional in pretty much every aspect of his life.

Now he is “recovered.” He is no longer delayed and is completely functional at or beyond age and grade level in every area including socialization. So I think recovered is appropriate. However, he still has “geeky” characteristics, but I don’t consider this the same as autistic even some others may.

One person wrote that she consideres her son still autistic because he has an unorganized backpack and desk at school. I thought - gee if that is the criteria there are a lot more “autistic” people than anyone thought. I see this as being unorganized, sloppy, absent-minded, or whatever but I wouldn’t call this autistic. I think this is what you were getting at.

My son has “nervous habits” and is unorganized in some areas but not in others. He doesn’t like certain foods but eat others. He thinks in a certain way. But none of these things disrupt his ability to function and be a productive individual.

Karen DeFelice defelice@thundersnow.com

 

 

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MMR – Vaccine Letters

[Letter from “The Daily Telegraph,  Dec. 18, 2001, “Health & Wellbeing” section, written by Dr. James le Fanu.]

It is only possible to make sense of the current controversy over the MMR vaccine by recognising that for the medical establishment - the experts at the ministry and the Royal Colleges, public health doctors and paediatricians - this is a battle they simply cannot afford to lose.  They have claimed that the MMR vaccine is safe and cannot countenance the possibility it may not be.

Over the past few months, they have been pummelling the opposition with expert committee reports and scientific papers.  There has, for example, been concern about the increase in the number of cases of autism in the past 10 years.  No problem.  This week, the Medical Research Council claims there has always been “a lot of it about”, but in the past, autism either went undiagnosed or was labelled as something else.  A likely story.

Their greatest success has undoubtedly been the eviction of the “troublesome” Dr. Wakefield from his base at the Royal Free Hospital, thus effectively denying him the opportunity to continue his research.

The main casualty in this systematic co-ordinated campaign is the truth.  MMR may or may not cause autism, but if it does they are certainly not going to admit it.

Some may find this shocking - which it is - but they should not be surprised.  Indeed, there are several other instances in recent years where the “truth” has suffered in a similar way.  Readers will recall the systematic misepresentation of the threat of a heterosexual Aids epidemic and the dangers of the “Western diet”.  In both instances, numerous committees dutifully trotted out the party line in “expert” reports whose most notable feature was the complete omission of any contrary evidence to suggest that they might be wrong - which they were.

·        Dr. James le Fanu

 

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Russian Roulette

[Letter to News.Scotland.com,  December 14, 2001 http://news.scotsman.com/index.cfm?id=1652752001&rware=NZWCKOAHQFJV&CQ_CUR_D OCUMENT=16 <- - address ends here.

It is understandable that the charity called Sense Scotland (Linda Long’s letter, 7 December) wishes to protect children from dreadful illnesses. However, recent scientific research in the United States suggests that combining the rubella vaccine with others is not a wholly successful strategy.

Research sponsored this year by the drug companies concluded: “Our results show that concurrent administration [of vaccines] did not substantially impair the antibody response to any vaccine antigen with the possible exception of rubella.”

Single rubella vaccines, there-fore, would appear to be the better option.

Interestingly, John McCafferty (Letters, 12 December) poses a question that has troubled many of us. Why are the mandarins in health acting so defiantly while uptake of the MMR vaccine falls spectacularly (66 per cent in the Western Isles)?

Do they expect parents to suddenly change their minds? The answer, unfortunately, is, yes, they do. While they have apparently painted themselves into a corner, and are in defiance of not only parents but the majority of GPs, they are now holding on awaiting an unlikely ally, a measles epidemic!

At that time they anticipate parents will rush to MMR, the only protection available, and the Russian roulette with our children’s lives will resume; the autism explosion will continue.

Bill Welsh

Chairman, Action Against Autism

Greenhill Avenue

Glasgow

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New Jersey Victory

As a NJ resident and a parent of a child with ASD it appalls me that

we need to fight so hard to get something so worthwhile as S-1133 (autism

research funding) passed yet the NJ state legislature in its infinite wisdom

actually reduced the tax on cigars which will result in 5 million less

dollars coming into the treasury

I don’t know maybe its just me but aren’t we as a society trying to reduce tobacco use? Argh!

·        Jim jtlarkin@att.com parent to Thomas 3yrs 5mos and making great progress with his ABA..!!!

 

Reply: Then there is this troubling and hypocritical aspect to children’s disability and health groups who are being funded specifically by tobacco tax (as some are in California via Prop 10).  If the truth be told, we should see this imagined fundraising slogan: “Smoke up, Californians One and All – Our Children’s Health Depends On It!”  This is strictly my own personal opinion. FEAT does not now receive any Prop 10 funds.  This may be because we just haven’t gotten around to asking or qualifying for any yet.

The victory in New Jersey for autism research funding is satisfying.  The initiative was supported by Cure Autism Now; COSAC; NAAR; Autism Autoimmunity Project; Unlocking Autism; Safe Minds; IMPACT; POAC; MOSAIC;

Noah s Ark; PACT; Quest Autism Foundation

·        Lenny Schafer

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Reader’s Posts

I live in Woodland Hills, CA and have noticed a large population of ASD

children. Please e-mail me if you are interested in participating in a

epidemiological study—there is a environmental law suit going on in the

 

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