The staggering costs of the chair- and dark-impaired.

If you do one thing today, go to Ballastexistenz blog and read this entry.

It  is funny, thought provoking and makes a very serious point in a thoroughly entertaining way.

Street of Shame

When Fleet Street was the traditional home of national newspapers in the UK it was lampooned as the street of shame. But whatever their faults, journalists then did to try and beat each other to a good story. Not nowadays. Not Sally Beck. When she filed her latest scare story about “independent” research that supported a link between MMR and autism with the Mail on Sunday she couldn’t wait to share the good news with Beezy Marsh who used to write anti vaccine stories for the Mail before moving on to the Daily Telegraph.

Marsh showed her gratitude by adding Beck’s name to her story when she filed it with the Telegraph.

Of course she didn’t just copy it word for word. You can understand why when you read this quote from team leader, Dr Stephen Walker in Beck’s account.

What it means is that Dr Wake-field’s implication is it may be coming study is correct. That study from the MMR vaccine. If that’s didn’t draw any conclusions about the case, and this live virus is specifically what it means to find residing in the gastrointestinal measles virus in the gut, but the tract of some children, and then they have GI inflammation and other problems, it may be related to MMR.

It must have been a very bad line from North Carolina that night!

The Times weighed in with a piece by Sam Lister, who was more measured. He stated correctly that the research had not yet been subject to peer review and had not been published in a scientific journal. He also reminded readers that

A recent analysis of 31 MMR studies by the Cochrane Library, one of the most authoritative sources of evidence-based medicine, showed no credible grounds for claims of serious harm.

Lister’s report also differed from the others in one important respect. He wrote that the study was led by Arthur Krigsman, of New York University School of Medicine. But even Lister missed the real story here.

Forget the research. As Lister says, it has not been peer reviewed. It has not been published. It is not even being presented at the IMFAR conference. It will be a poster on a display board describing a work in progress. The real story has been blogged by Kev If journalists spent more time investigating stories instead of just reporting them then Lister would have quickly discovered that this so called new, independent research is irrelevant.

He could have contacted the NYU School of Medicine to see if they were supporting Krigsman’s research and did they know he was also working down in Texas as a partner of Andrew Wakefield’s Thoughtful House Centre for Children. He could have visited the Thoughtful house website and discovered that Steven Walker is an advisor to Thoughtful House. The NAA website reveals that Wakefield was a consultant to the study which is funded by ARI and NAA. No mention of NYU or Wake Forest as participating in this study in any way. So we have Wakefield acting as a consultant to a study that is being carried out by one of his partners and a member of his advisory board and funded by Wakefield’s supporters. No conflict of interest there, then.

But there is an even bigger story that everyone has missed. This from the Thoughtful House FAQ
What is the purpose of doing a diagnostic endoscopy/colonoscopy in a child with an autistic spectrum disorder?
Children with ASDs and chronic gastrointestinal symptoms often have a disorder known as Autistic Enterocolitis. The only way to diagnose this with certainty is to perform a diagnostic endoscopy and biopsy and inspect the tissue under a microscope.

What can be done for a child with autistic enterocolitis?
Proper medication may be given and dietary intervention may be prescribed in order to alleviate any or all of the symptoms, including diarrhea, pain, constipation, abdominal distension, malabsorption, and growth retardation. It is not an attempt to treat their autism.

Why not simply treat all ASD children with gastrointestinal symptoms as if they had autistic enterocolitis, and bypass the need for an invasive endoscopy?
In general, it is poor medical practice to empirically treat conditions that have not been properly diagnosed. This is especially true for treatments that involve the use of medications with the potential for unpleasant or dangerous side effects, and for conditions in which empiric treatment would interfere with subsequent proper diagnostic tests.

What is really happening here? Parents are being told that their children have to undergo this endoscopic test to prove that they do in fact have autistic enterocolitis. Then they take specimens and send them to Steve Walker as part of a research program set up to determine if autistic enterocolitis exists!

Is there a doctor in the house? Would you require an endoscopy before treating any or all of the symptoms, including diarrhea, pain, constipation, abdominal distension, malabsorption, and growth retardation, in a child at your clinic? Is this standard practise?

So Wakefield has set up his centre to help children. Except that he cannot help them with the blood tests, stool tests, and abdominal X-ray that they have to do before Dr Krigsman decides if he will see them. These are necessary to diagnose a problem. But they are no use to Wakefield. He needs to stick those cameras on flexible tubes inside kids to see if it is worth his while to take biopsies that he can use to prove his hypothesis about MMR and autism.

Thoughtful House exploits parents fears and abuses kids by turning them into lab rats. Who is going to write that story? Is there a journalist in the house?

Autism – where’s the debate, Sunday Times?

Two weeks ago Katie Grant, writing in the Ecosse section of the Sunday Times, questioned the validity of recent statistics that charted the growth of autism in Scottish schools. She did not believe the headline figure of 600% as reported in the Scotsman and objected to the way it was being used by anti vaccine pressure group Action Against Autism, for "scaremongering in the most sensational way."

I share her disbelief and her objection to Action Against Autism. I am not a journalist. But when I read something that I find hard to believe I try and check the facts. In this case I checked the source and discovered that it did not support the 600% figure. If Ms Grant had done the same she could have used her column to expose Action Against Autism's dishonest use of the figures for "scaremongering in the most sensational way."

But Ms Grant did not check her facts. Instead she replied with her own brand of scaremongering, thus.

To the great distress of parents whose children really are on the autistic spectrum, the condition has been adopted by many other parents on behalf of children who are not ill, just badly behaved. If a child is described as “autistic”, nobody can be angry if he or, more rarely, she throws a tantrum at school or consistently irritates the neighbours.

Children know that if they suffer from some kind of behaviour “ism”, good things result: reduced expectation, indulgence instead of punishment, safety from even the gentlest rebuke. At the first sign of a teacher’s impatience, the child can rush home and cry “abuse”. Autism, a serious condition when real, is being exploited by others for all it’s worth.

And it’s worth quite a lot. A diagnosis of some kind of behaviour “ism” might result in £80 a week disability living allowance. If a parent has to become a carer, it is worth even more. I stress again that there are families who absolutely need and deserve the state’s help with children who really do suffer from neurological disorders, but there are also families whose children are not ill and therefore deserve no such help.

Ms Grant offered no evidence to support this accusation. And parents of really autistic children were angered and distressed. The Sunday Times was overwhelmed with letters and complaints. I wrote a letter pointing out that the statistics were wrong and rebutting her unfounded accusations. My letter was not published. But I am in good company. The Sunday Times also ignored letters from the National Autistic Society's chief executive and NAS branch officers from Scotland.

However Ms Grant did write a follow up piece the week after in which she posed as the injured party! Apparently we were all guilty of trying to shoot the messenger because we did not like the message.

I have become something of a hate figure for those who are not even prepared to concede that this matter should be debated.

If sceptics about official statistics are shouted down, there can be no debate.

Those who live with autism can only be helped by opening up the debate. Shouting down those with unpopular views will do them no favours at all.

Ms Grant wants a debate. I offered her one in another letter.
Dear Sir,
on May 14 you published an article by Katie Grant in your Scottish edition in response to reports that autism in Scottish schools had grown by 600% since 1999. Naturally your journalist was sceptical and suggested that the increase could be explained by misdiagnosis because "Some ‘autistic’ children aren’t ill, they’re just badly behaved."

Ms Grant did not cite any evidence to support her claim which attracted a largely hostile postbag. I posted a letter pointing out that the six fold increase was the result of a change in recording procedures. I apologize for repeating myself but I wonder if anyone apart from the auto-responder actually read my email, which contained this.

"The figures quoted are based on a misreading of the statistics issued by the Scottish Executive. The record clearly states that, "It should be noted that prior to and including 2001 the data was based on pupils with Records of Needs only. From 2002 onwards the data includes pupils with Records of Needs and/or Individualised Educational Programmes."

"So figures from 1999 to 2001 were collected according to much narrower administrative criteria than those from 2002 to 2005. If you view the figures on the Scottish Parliament's website http://www.scottish.parliament.uk/business/pqa/wa-06/wa0508.htm it is clear that the change in criteria for data collection caused an apparent doubling of  autism in Scottish Schools between 2001 and 2002

"But after allowing for the artificial boost that accompanied the change in data collection methods, percentage increases of 52% and 99% respectively between 2002 and 2005 continue to suggest a steady increase in numbers year on year.

"The increases are significant and merit further investigation. But to argue for six-fold and four-fold increases based on these statistics, as happened in the original article in the Scotsman (9 May 2006), is wrong."

I was surprised to read Ms Grant's follow-up this Sunday (May 21) in which she claimed that "My desire was — and still is — to question the reliability of the most recent statistical analysis of autism in Scotland." Has she read my email? Has she taken the elementary step of checking the sources for the alleged 600% per cent increase? Obviously not as she still writes "If sceptics about official statistics are shouted down, there can be no debate."

Let me repeat once again that the official statistics do not support the headline figure of a sixfold increase in autism. This is a straw man erected by the anti vaccine pressure group, Action Against Autism, which was reported uncritically by the Scotsman and accepted by Ms Grant.

Ms Grant cites Tom Berney in support of her claim that there is over diagnosis of autism. I have read Tom Berney's original paper. In it he welcomes, "the development of effective and internationally recognized research instruments for autism [like] the Autism Diagnostic Interview."(ADI) A revised version of the ADI was used by Professor Eric Fombonne in his epidemiological study of autism in Staffordshire between July 1998 and June 1999. He found a prevalence rate for autism of 62.6 in 10000. A follow up study in 2002 found a rate of 58.7 in 10000. The Medical Research Council has adopted a figure of 60 in 10000, splitting the difference.

The alleged epidemic in Scotland's schools fall far short of these figures. The statistics show that 44 in 10000 primary pupils are diagnosed autistic and the figure falls to 26 in 10000 for secondary pupils. So the real story is that, despite improvements, a significant number of autistic children in Scottish schools are still being missed.

So, these two articles by Katie Grant have no basis in fact and would have to be retracted if the Sunday Times was a peer reviewed scientific journal. Ironically, last week's edition of the Sunday Times includes a piece by Brian Deer decrying the falling standards of medical journals.

I do not expect you to publish a retraction. But I would welcome the opportunity to publish a reply to Ms Grant. Her most recent piece was entitled, "Autism: we need a debate." She has proposed and seconded her motion. I respectfully request the opportunity to oppose.

This drew forth the following attempt to patronize me.

——– Original Message ——–
Date: Tue, 23 May 2006 14:55:59 +0100
From: Diver, Brenda <brenda.diver@sunday-times.co.uk>
To: <mike.stanton@dsl.pipex.com>

Dear Mr Stanton,

Thank you for writing to the Sunday Times. I am sorry you have been upset by Katie Grant's article about autism statistics in Scotland. Opinion pieces such as this are designed to be challenging, but when they touch on such emotive or controversial subjects inevitably some readers can find them hard to bear.

I would, however, defend Katie's efforts. She wished to express her genuine scepticism about the huge rise in reported cases of autistic spectrum disorder in Scotland. But in doing so she went to some lengths to distinguish between parents whose children "really are on the autistic spectrum" and those whose children were not, yet who might be included in the latest figures. Her sympathy for the parents of autistic children was apparent in the piece, and I know from talking to her that she regrets any distress which has been caused.

You might be interested to know that we have received a number of other letters on this subject. We hope to feature some of them in our features section this Sunday.

Yours sincerely,

Mike Wade
Ecosse Editor

So, no debate then. And no answer to my last letter which read

Dear Ms Diver
I was not upset by Katie Grant's article. Nor was I challenged. Neither did I find the article hard to bear. I do find it hard to understand why nobody at the Sunday Times is able to respond to my specific points.

1. The premise for Ms Grant's article is that the official statistics indicate a 600 percent increase in autism diagnoses among secondary school children in Scotland. This premise is not supported by the facts.

If Ms Grant cares to check the statistical source for that claim, as I did, she will find that 600 percent is a gross exaggeration and a deliberate distortion of the figures by a tiny pressure group funded by Bill Welsh. His group, which was called Action Against Autism and is now the Autism Treatment Trust, claims that there is an autism epidemic caused by vaccines. Like Ms Grant I reject their claims. Unlike Ms Grant I also reject their maths.

2. Ms Grant has suggested that the increase in reported cases includes children who are not autistic. She offers her own theory to explain this but offers no evidence at all to support her hypothesis. My point is that the hypothesis is not necessary. There is general agreement among professionals that autism is under diagnosed. Scotland probably has the best record for diagnosis in the world and its figures still fall short of the internationally accepted figure of 60 in 10000.

3. I do not doubt Ms Grant's sympathy for parents of children who "really are on the autistic spectrum" I just want to point out that until she can provide evidence to the contrary, that includes all of the children in the official statistics plus a lot more who are currently being missed by the system.

I am posting a link to this blog to the Sunday Times. I am opening up the debate. Ms Grant, Ms Diver, Mr Wade and anyone else at the Sunday Times is welcome to join in.

make school make sense

The National Autistic Society is making its first major foray into political campaigning with its make schools make sense education campaign. The figures are stark enough. According to a survey of NAS members (n=1367)

 

• 40% of autistic children have been bullied in school.
• 25% of autistic children have been excluded from their school.
• 70% of parents are dissatisfied with the level of understanding of autism in their child's school.
• There are more appeals to Special Educational Neeeds and Disability (SEND) Tribunals from parents of autistic children than for any other type of special educational need. 79% win their appeals.
• Just over half of all young people aged 14 – 19 have a transition plan in place. In mainstream schools the figure falls to a third.

Remember these are the figures for parents who are NAS members. As the report points out,

NAS members are necessarily people who have found access to support and information mechanisms. 98% of respondents were able to specify the age their child was diagnosed; therefore this survey does not include those families still battling for answers about why their child is not developing typically.

 

In other words, the NAS survey understates the extent of the problem regarding education and autism in the UK. But the testimony from parents and children assuredly does not understate the nature of the problem.

In year 10, I got to the point where school had become a phobia. As I got in the car to go to school, I started to have a panic attack. Josh age 17

My child has been out of school for over a year which is very upsetting as he has the ability to do very well if taught in the right environment with teachers trained in autism and Asperger syndrome.

The school says my child 'copes' in the classroom but my son constantly says he hates school and self harms over this.

I don't have a school to go to … because the school I was at is no good and we can't find a new one. Sam age 12

I felt mainstream teachers were left to their own devices with no, or little, senior help. Jamie was extremely distressed at school but often hugged the teacher. Senior staff's response was to exclude him. Why can't they help us?

The other children laugh at me sometimes. I don't know why they tease me … I hide under the desk because there are lots of boxes there and that is a good place to hide. Jamie age 11.

You don't get told anything unless you know your child's rights and fight every step of the way.

Et cetera, et cetera, et cetera.

The campaign was launched at the House of Commons by Josh Muggleton, a young man with Asperger syndrome. His dad, John is known to many of us via his website. John also hosts Josh's webpage where you can download the speech he made to launch the campaign.

Here is an excerpt.

It wasn’t just the bullying. It was the lack of understanding of the staff at the school. Nobody seemed to listen to what I was saying. I needed a place of sanctuary when things got too much for me. I needed encouragement from the teachers – not threats.

If the teachers had been properly trained in Autistic Spectrum Disorders then they might have be able to help me cope.

No one deserves to go through what I went through. If I had one wish, it would be that all teachers in mainstream schools had compulsory education in autistic spectrum disorders.

Despite all the depressing tales and statistics in the report and campaign materials that accompany the launch, this campaign has made me feel good about autism. For a start, unlike the infamous Autism Speaks video, autism does speak in this campaign. Not only Josh, but 25 autistic children were interviewed in depth and their views are reflected and respected by the campaign. And it was not just the bright, verbal kids who were involved.

In addition to providing a topic outline to the children before interviews, communication supports and visual prompts were used where children had limited or no verbal communication.

Yes, the NAS is beginning to rock by listening to autistic people of every age and ability and publishing their opinions. As well as trying to help autistic people to cope with the world as it is, the NAS is also working to make the world a better place in which to be autistic.

People see that autistic people are different and just because they are different, they start teasing them … This man in a wheelchair came in … he gave us this little phrase to remember: 'It's OK to be different.'

Join the make schools make sense campaign here.

The Judge Rotenberg Center

Kev has just posted on the JRC. By coincidence this arrived in my inbox yesterday. This email is published unedited apart from a little necessary reformatting and some tidying up of the links. I do not know who the author is. But I trust the person who brought it to my attention.

Please read all of this very important email, and then circulate it far and wide if you agree with it’s purpose.

 

The purpose of this email is to inform concerned individuals about a judicially protected facility that is blatantly violating the basic human rights of severely challenged or disabled individuals. Manyof the residents of the Judge Rotenberg Education Center are people with Autism, some of whom are non- verbal.

 

The Judge Rotenberg Center’s main location and administrative offices are located in Canton, Massachusetts, and it’s 50 other residential homes are located in several cities in Massachusetts. The director of the JRC, Matthew Israel, was a student of the late
B.F. Skinner, a psychologist who was a strong proponent ofbehaviorism, who formed many of his beliefs from experiments with animals.
http://www.infoplease.com/biography/var/bfskinner.html
Israel departs from Skinner’s teachings, in that Skinner believed aversives (described below) should be limited to extraordinary or emergency situations and not for standard training, while Israel relies upon them predominantly for many of his students.

 

The JRC uses level III aversive techniques to alter or suppress selfabusive behaviors or any other behaviors that staff members deem as uncooperative or unfavorable. Aversives used at the JRC, which wasformerly known as the Behavior Research Institute (BRI), include: spanking, pinching, forcing to eat taste aversives (vinegar mix, jalapeno peppers, or hot sauce), withholding food, forcing to smell ammonia, spraying water to the face, forcing to listen to static noises through specially designed helmets, and their trade mark method, the use of the Graduated Electronic Decelerator (GED), which
simply put is a shocking device that delivers a jolt to the student/patient of up to 65 volts of electricity through remote control. These aversives are sometimes administered while thepatient has their hands and feet restrained.

 

Two deaths at the Center raise serious questions regarding their methods. On December 19, 1990, Linda Cornelison, a patient who was mentally retarded and non-verbal, died of causes related to stomach perforations and ulcers. The Center failed to properly diagnose these apparently pre-existing conditions, and failed to provide an appropriate diet and treatment. When symptoms occurred that should have provided an opportunity for further examination, the JRC instead opted to punish her with a plethora of aversive treatments, including 61which were administered on the day of her death. Linda, who had weighed 120 pounds when she began the Center’s food program, weighed just 90 pounds at the time of her death, which was less than one year later. http://normemma.com/lcorneli.htm

 

On the 23rd of July, 1985, Vincent Milletich, a 22 year old student with Autism, died at the JRC’s (Then Behavior Research Institute) group home in Seehonk, Mass. According to a New York Times article, “he (Vincent) had been shackled, fitted with a helmet and forced to listen to static noise through earphones. The Rhode Island medical examiner who performed an autopsy on Mr. Milletich said the victim died of asphyxiation but said it was not known what cut off his oxygen supply.” The article goes on to say, “Judge Ryan said Mr. Israel ”was negligent in authorizing the use of this helmet without having an expert in helmet construction design the helmet or subject it to a safety inspection.”
Source

 

On page 25 of Dick Sobsey’s book, “Violence and Abuse in the Lives of People with Disabilities The End of Silent Acceptance?” Paul H Brookes Pub. Co. (January 1994), the writer reveals, “Vincent Milletich died after BRI workers `pushed his head between his legs, cuffed his hands behind his back, put a helmet on his head with radio static hissing into his ears and masked his face. He went limp and was declared dead on arrival minutes later at Rhode Island Hospital in Providence.’

 

According to Director Matthew Israel’s own words, posted on JRC’s Website, “The cause of death (Vincent’s) was ultimately determined to be natural causes related to his condition of tardive dyskinesia and not due to the restraint procedure that had been employed.” However, his claim is not substantiated in the coroner’s report or the findings of the court, which explicitly stated that asphyxiation was the cause. Vincent’s parents have said that he suffered from epilepsy. Regardless of what other diagnosis Vincent may or may not have had, Judge Ryan DID declare Mr. Israel “negligent” in regards to the helmet that was used in his treatment on the day of his death. This fact is a linkage between the JRC staff and the death of Vincent Milletich that Matt Israel cannot evade with clever words.

 

It should also be known that the Center imposes a diet upon it’s student population that is high in wheat and other grains that have high gluten (a protein) content. Many parents and experts will very quickly point out that gluten, and also casein (a dairy protein) cannot be properly digested by some people with Autism. The result of eating such foods will often lead to hyper, uncooperative, or confused behaviors. The demonstration of such behaviors would undoubtedly lead to aversive treatments being applied to the students, yet the Center’s, and Dr. Israel’s philosophy is not concerned with the cause of behaviors, only the cessation of them.

 

Many foes have arisen to oppose Dr. Israel’s continued use of level III aversive treatments. The Massachusetts Office for Children failed to stop him in 1985. Since 1986, the Massachusetts legislature has been unable to ban their usage. Throughout most of the 1990’s the Massachusetts Department of Mental Retardation was also unable to stop the aversives. The courts have continuously favored the Center. Matt Israel’s cause is also supported by a troop of parents who will always favor keeping their children’s behavior subdued, rather than seeking out treatments that focus upon identifying the causes and meeting developmental and other needs.

 

In 1994 Eye to Eye with Connie Chung attempted to expose the JRC, but Connie may have found Dr. Israel to be far more clever than she was prepared for. Please click on the following link for more details: [Source]

 

Currently, New York Senator Martin J. Golden has introduced Senate Bill 6876, which if approved by vote, will prevent New York schools from sending students to the Judge Rotenberg Center. If you live in the state of New York please email, phone or write your local state senator and plead with them to pass this bill. Here is a link to the text of the bill:
http://assembly.state.ny.us/leg/?bn=S06876&sh=t

This link will allow you to track the progress of the bill:
http://assembly.state.ny.us/leg/?bn=S06876

You will find email addresses for New York Senators at this link:
http://www.senate.state.ny.us/Senatorbio.nsf/Public_MemberEmail?openform

Here is a link for contacting lower house members by email:
<http://assembly.state.ny.us/mem/>http://assembly.state.ny.us/mem/

 

If you are not a New York resident, it may still be worthwhile to email your concerns. You may also want to investigate whether your state is sending children to the JRC. If so, please contact them and remind them that the aversive therapies used by the JRC violate the Individuals with Disabilities Education Act, which requires an extensive focus on positive behavioral interventions. Please contact the Federal Department of Education with any complaints through this link: http://www.ed.gov/about/offices/list/oig/hotlineform.html?src=ct

 

It may also be helpful to contact the Food and Drug Administration (FDA) and demand a re-evaluation of their registration of the Graduated Electronic Decelerator (Shock Device), which is manufactured by the Judge Rotenberg Education Center, Inc. It’s registration number is: 1222743, and it is classified as an “Aversive Conditioning Device, FDA regulation number: 882.5235. Please inform them that this device is being used on individuals with severe forms of Autism who may be completely unable to associate the reason for the pain (shock) with their behavior. They may also suffer from sensory related issues that increase their pain level far beyond what a typical person may experience. Even the aversive shock testing that Dr. Ivar Lovaas performed on people with Autism did not reveal any lasting learned benefit. This fact alone should clearly reveal that the GED is not a suitable “conditioning device,” since it’s effect is quickly lost once the device is no longer employed. This reality makes it evident that the so called “conditioning device” has become an ongoing cattle prod or dog collar, which produces only pain, with no educational benefit. There are other non-invasive treatments that are proven to have long term benefits. Please email the USFDACenter for Devices and Radiological Health at this link: mailto:dsmica@cdrh.fda.gov , or write to them at:
FDA/CDRH/OCER/DSMICA (HFZ-220)
1350 Piccard Drive
Rockville, MD 20850-4307 U.S.A
Phone: 1-800-638-2041 or 301.443.6597

 

Be sure to specify the GED’s registration number. It should also be
noted that this device is NOT FDA approved. It IS FDA registered. If anyone finds references to claims of FDA approval, or has heard Dr. Israel make claims of it being approved, they should immediately report this to the FDA. In conclusion, I want it to be known that this message was originally written by a person who has Asperger’s Syndrome (A milder form of Autism), who chooses to remain anonymous. My sister is
severely effected by symptoms related to Autism, and has been in institutions for 38 years of her life. I have personally seen many cases of self abusive behavior within the hallways of these institutions. With all that I know, and all that I have seen and felt, I would never send my sister to such a place as the Judge Rotenberg Education Center.

My little boy is also diagnosed with Autism. He is the most beautiful and innocent person in the world to me. The idea of someone purposefully shocking him under the guise of
medical care infuriates me. Please read, hear and feel my words as being alive and full of empathy for my fellow friends who live with Autism. Yes! It is possible for a person with Autism to have empathy!

 

At the time of writing, this letter is being witnessed by members of the Autism community, including people with Autism, parents of children with Autism, and professionals and advocates who respect and care for people with Autism. Included in these paragraphs are the collective thoughts and feelings of many of us who sincerely care about how people with Autism are treated.

Permission is granted to distribute this document for positive advocacy purposes. Permission is not granted to make alterations. However, I will permit notations to be added to indicate outdated portions of the text, or to explain the outcome of a legal decision, or other needful clarifications, as long as they are accurate,clearly identified as notations, and they must not detract from the purpose of this document.

 

Thank you for caring!
5/25/06

Katherine McCarron

Katherine McCarron was autistic.

Katherine McCarron was 3 years old

Katherine McCarron was killed on Saturday May 13th, when her mother placed a plastic bag over her head.

Katherine McCarron was not killed because she was autistic.

Katherine McCarron was not killed because of lack of support.

Katherine McCarron was not killed because of lack of services.

Katherine McCarron was killed, according to a Tazewell County Court record, "to end her [mother's] pain and Katie’s pain.”

Katherine McCarron was killed because her mother could not cope with her daughter's autism.

Katherine McCarron's mother decided to kill her daughter and succeeded.

Katherine McCarron's mother tried to kill herself and failed.

Katherine McCarron's mother will have to live with her crime.

Katherine McCarron will not.

Katherine McCarron: In remembrance of you.

With deepest sympathy to Paul McCarron on the death of his daughter, and Emily McCarron, Katherine's younger sister.

POST SCRIPT

Please do not respond to this post. It is a memorial to Katherine and not an invitation to debate. This post is part of Katherine McCarron Memorial Day, by the Autism Hub. On Wednesday, May 24, people will post memorial messages about Katherine McCarron. The next day, the hub will be closed in her memory.

Once more on Autism in Scotland

"Some ‘autistic’ children aren’t ill, they’re just badly behaved" according to the Sunday Times. Following on from the silly scare story in the Scotsman (see my previous post) they try and restore a sense of balance. Let us disregard for the moment their error in regarding autism as an illness. By trying to debunk the autism epidemic nonsense put out by Action Against Autism they finished up arguing that many of us are faking it to excuse bad behaviour and get access to welfare benefits! I kid you not. Well done Bill Welsh and the mercury mafia in Scotland. You really did us proud this time. Here is my letter to the Sunday Times.

Dear Sir,
regarding Katie Grant's article on autism in Scotland (May 14, 2006) I wish to make the following points.

The figures quoted are based on a misreading of the statistics issued by the Scottish Executive. The record clearly states that, "It should be noted that prior to and including 2001 the data was based on pupils with Records of Needs only. From 2002 onwards the data includes pupils with Records of Needs and/or Individualised Educational Programmes."

So figures from 1999 to 2001 were collected according to much narrower administrative criteria than those from 2002 to 2005. If you view the figures on the Scottish Parliament's website http://www.scottish.parliament.uk/business/pqa/wa-06/wa0508.htm it is clear that the change in criteria for data collection caused an apparent doubling of autism in Scottish Schools between 2001 and 2002

But after allowing for the artificial boost that accompanied the change in data collection methods, percentage increases of 52% and 99% respectively between 2002 and 2005 continue to suggest a steady increase in numbers year on year.

The increases are significant and merit further investigation. But to argue for six-fold and four-fold increases based on these statistics, as happened in the original article in the Scotsman (9 May 2006), is wrong.

It is a shame that the Sunday Times took the original report at face value without checking the facts. But I find the spin that your reporter put on the story to be even more disturbing.

The best available epidemiological research in the UK, endorsed by the Medical Research Council, suggests that 1 in 166 people in the UK have an autism spectrum disorder (ASD). Scotland is probably better than than most parts of the UK in diagnosing and recording autism. But the figures in your report still fall far short of 1 in 166 for Scottish school children.

While I welcome Katie Grant's dismissal of the alarmist scaremongering that accompanied these statistics I must take issue with her interpretation that the statistics actually represent the adoption of the diagnosis by parents who find it a fashionable way to explain away their children's misbehaviour.

My son was diagnosed in 1997 at the age of 12 after a two year battle to get referred to a specialist. Diagnosis was low because very few people where qualified to give a diagnosis. Things are improving and the rate of diagnosis is increasing. This is not because parents are adopting the label. This is because NHS consultants are saying that these children meet the diagnostic criteria.

Nor is autism an easy way out for kids with behaviour problems. Pupils with an ASD are more likely to be bullied. They are more likely to be excluded and they are more likely to self harm or attempt suicide than pupils without an ASD.

Regarding access to benefits, autistic children are frequently refused disability living allowance because the system does not recognize the disabling aspects of autism in apparently healthy children. The costs to families in terms of additional expenses incurred and loss of earnings because you have to stay at home with your autistic child far outweigh any possible gains from the benefits system. To imply that we seek diagnosis for financial gain is deeply wounding and unworthy of you.

And while you may argue that your comments do not apply to the real autistic children, the fact remains that all the children identified in the figures from Scotland are "real autistic children" and there are many more who have not yet been diagnosed who suffer equally from ignorance, prejudice and misunderstanding. Your efforts to resist the damage caused by the anti vaccine fanatics in Action Against Autism have only served to compound that damage.

Autism in Scotland’s Schools.

Yesterday I promised to return to the figures for autism in Scottish schools when the detailed figures were published. Just to remind you, The Scotsman claimed that

Official statistics show 825 pupils were diagnosed with autistic spectrum disorder in state secondaries in 2005, compared with 114 in 1999 – an increase of 623 per cent. Over the same period, the number of autistic youngsters in primary schools more than quadrupled, from 415 to 1,736.

The increases emerged in a written parliamentary answer to be made public today.

I read the answer and noticed something that the Scotsman had ignored.

Robert Brown: The information requested is provided in the following tables. It should be noted that prior to and including 2001 the data was based on pupils with Records of Needs only. From 2002 onwards the data includes pupils with Records of Needs and/or Individualised Educational Programmes.

I have taken these figures from the Scottish tables and calculated the real percentage increases. 

	1999	2001	%change	2002	2005	%change
Primary	415	653	+57%	1142	1736	+52%
Secondary	114	224	+96%	415	825	+99%

What this means is that prior to 2002 only those pupils who had been through a rigorous statutory assessment were included. From 2002 the criteria were broadened to include all pupils who were identified as having special educational needs. So under the old system there was a significant change in numbers, up by 57% for primary age pupils and 96% for secondary age pupils between 1999 and 2001.

After allowing for the artificial boost that accompanied the change in data collection methods, percentage increases of 52% and 99% respectively between 2002 and 2005 continue to suggest a steady increase in numbers year on year.

The increases are significant and merit further investigation. But to argue for six-fold and four-fold increases based on these statistics, as happened in the Scotsman, is wrong. We expect the anti-MMR camp to misrepresent the facts to bolster their case. But when they are aided and abetted by a prestigious newspaper like the Scotsman that is a cause for concern.

The “Hidden Horde” just got younger

A report in today's Scotsman gives extensive coverage to the claims of Bill Welsh, Chair of Action Against Autism. The article reports that

Official statistics show 825 pupils were diagnosed with autistic spectrum disorder in state secondaries in 2005, compared with 114 in 1999 – an increase of 623 per cent. Over the same period, the number of autistic youngsters in primary schools more than quadrupled, from 415 to 1,736.

According to Bill Welsh

This is not a Scottish problem; it is a developed world problem, because the same thing is happening in America, Canada, Australia and New Zealand. One common factor affecting children throughout the developed world is the vaccination issue.

"The number of young children who have this previously very rare diagnosis is reaching epidemic proportions and it is being ignored by the medical establishment.

Newspaper reports are hard to interpret. But taking this one at its word suggests that there has been an increase in the number of pupils who are diagnosed with autism while they are at secondary school. Did they regress aged 12 or were they autistic before then? In which case the "Hidden Horde" just got younger. Or are they part of the growing number of children who are being diagnosed at primary school and are now entering the secondary system.
The wording for primary children is more ambiguous. What proportion of these children are entering school with an autism diagnosis and how many are getting a diagnosis once they enter the school system? Could the figures be related to an 11% growth in the number of full-time equivalent (FTE) educational psychologists employed in Scotland since 1999. If so what are the autism figures for Glasgow where the number of FTE educational psychologists has fallen?
There are a number of problems using school data on autism to draw conclusions about prevalence. These have been widely discussed by bloggers. Notably, Joseph has discussed this in relation to the data from California and Orac has discussed the study by Paul Shattuck that questioned the usefulness of school administrative data in epidemiological studies of autism.

The data fluctuates wildly over school districts. In Scotland's case
Aberdeenshire, for instance, recorded a 533 per cent increase among primary pupils over the six-year period, while in the Borders the rise was a relatively small 137 per cent.

Variation and growth can be driven by a number of factors. School districts with poor provision and awareness do not go out of their way to identify autistic pupils. When I began teaching in 1983 my county had no officially diagnosed autistic pupils. But we could identify five in our special school of less than 40 pupil. Districts that do provide services attract parents. The recent drive for inclusion gives schools a financial incentive to identify pupils with special needs, including autistic ones. There is also the problem with diagnostic substitution discussed in Shattuck's paper. If autism is going up are other diagnoses going down? And while school data shows increases it still seriously under estimates numbers compared with the most recent epidemiological studies.

Given all these qualifications what are we to make of the figures? The report in the Scotsman links to an earlier story.

A study published today by Health Protection Scotland reveals that 25 postcode districts in Scotland have more than 20 per cent of nursery school children at risk of catching measles because they have not had the MMR jab.

So all we can say is that in Scotland MMR has gone down and autism has gone up amongst primary age children. It is also rising among teenagers who had their MMR a long time ago. The figures fail to demonstrate a link between MMR and autism and suggest to me that there is no link. But, as reported, they prove nothing. They certainly do not provide any basis for the claims of Bill Welsh and Action Against Autism. I will return to this when the actual wriiten answer to the parliamentary question is published.