Action For Autism

David Kirby on Autism in Scotland

Autism in Scotland

Scotland has a population of just over 5 million people. In 2004 The Scottish Executive published the Audit of Services for Autistic People Statistical Report. This was the result of a questionnaire sent out to all local authority/National Health Service partnerships. Two areas, Borders and Western Isles failed to respond and were excluded from the subsequent ananlysis of results. As a consequence the Audit deals with a total  population of approximately 4.9 million people.

The Audit found 3412 children and young people under 18 with a diagnosis of an autistic spectrum disorder. The Audit could only find 645 adults with a diagnosis of an autistic spectrum disorder. This finding has been taken as further proof of a putative autism epidemic by journalist David Kirby writing for The Age of Autism. Unfortunately for Kirby, he obviously has not read the report in question. Instead he offers

Many thanks to Clifford Miller for furnishing the Scottish audit data.

Miller also furnished this graph which Kirby faithfully reproduces.

A misleading source 

It looks like a figure taken from the Audit. But this figure is not in the PDF version that Miller links to. Nor is it in the word.doc that I have read. The clue is in those weasel words at the top of the figure, “Data Source.” Yes, Miller invented the figure based upon data gleaned from the audit. This would matter less if it was an accurate representation of the data source. But it is not. If we start at the bottom with “Average age of diagnosis of autism - approx three,” Average age of diagnosis is nowhere mentioned in the Audit. Furthermore, the Audit only contains data on people aged 3 years and older. So is Miller claiming that everyone in Scotland was diagnosed around their third birthday? How does he explain Howlin and Moore [1997] who found a mean age of 5.69 years for diagnosis in Scotland?

Miller’s second innovation is to give us four age groups: those born up to 1954, and those born in 15 year birth cohorts: 1955 - 1970, 1971 - 1986, 1987 - 2002. These are not the age groups in the data source. The Audit does not refer to date of birth. It refers to adults over 50, adults aged 25 to 49, adults aged 18 to 24 and children aged 3 to 18. As 18 is the legal age of majority in Scotland I am going to assume they mean “up to but not including 18″ when they refer to children. Of the birth dates you can derive from these ages: up to 1954, 1955 -1979, 1980 - 1986, 1987 - 2001, only the over 50s group matches. 

Miller is also dishonest when he compares adults to children in the same graph. Data for children is derived from the responses of 13 NHS boards. Only 10 NHS boards provided adult data. Those missing are

Ayrshire and Arran -  population  376,000

Forth Valley - population               300,000

Greater Glasgow - population    1,200,000.

So the figures for adults are based on a population of approximately 3 million rather 5 mllion. They exclude Glasgow, the most densely populated urban area in Scotland. None of this matters to Miller. He believes there is a world epidemic of autism in children, a pandemic that is caused by “vaccines.” He does not specify which vaccines, or which components or how they might be acting to cause his pandemic. He argues that if there is no pandemic there ought to be 500,000 autistic adults requiring 24/7 care in the UK. This is plain silly. Never mind that we are talking about a spectrum of need, where most autistic adults do not require 24/7 care. If Miller were right there ought to be 133,500 autistic children requiring 24/7 care in the UK. Some do require constant care but most clearly do not.

A tenfold error

So much for Kirby’s source. What does Kirby make of this material? It turns out that he makes a complete pig’s ear of it.

Let’s look at the numbers. There are approximately 34,000 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 2,125 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year.

If the rate of autism in Scotland had remained unchanged between 1955 and today, then there are many, many uncounted adults going without support, services, or even much recognition.
In fact, at 2,125 cases on average per year, there should be 65,875 people with autism in Scotland between the ages of 22 and 53 years alone. But only 600 have signed up for any help at all, in a country with universal healthcare, no less.

Which begs a few questions: Where are the other 65,275 people in that age group with autism? Why have 109 out of every 110 adults with autism never sought, nor received, any special attention for their particular needs? Why have they not been counted? And why is there no national outrage over the neglect of so many thousands of fellow citizens going without services that they need?

In a country the size of Maine, with a population much smaller than New York City, it seems that the government would be able to locate and help these people.
Unless, of course, some of them are not there.

These figures are hogwash. Kirby may be able to use a calculator but he cannot read a graph. The figure is 3,400 not 34,000.  Incredibly this post has been up for over a week now and nobody seems to have spotted such an egregious error, neither managing editor Kim Stagliano, nor editor Dan Olmsted and certainly not Kirby himself. And none of his  supporters has posted a correction in the comments section, not even Barbara Fishkin who commented,

David

Thank you for this. Such piercing information. We won’t know what to do with our kids with autism as they age because THERE IS NO PRECEDENT. There never were kids afflicted like this before, in these numbers. We had better start preparing to make life work for our kids as they get older! Barbara

No there never were kids like this in these numbers before because these numbers are wrong! Over on Barbara’s website I read that:

Barbara Fischkin has taught students how to read and write journalism, creative nonfiction and fiction in the university classroom and for the country’s most respected writers’ organizations and institutes.  Her innovative method for teaching writing across the curriculum simulates the atmosphere of a newsroom and utilizes the techniques of the fiction writing workshop, while emphasizing the crucial difference between fact and fiction.

Hm … yes, that crucial difference between fact and fiction.

FOOTNOTE:

Kirby has published the same article on the Huffington Post. There are a few minor changes - a different title and no acknowledgements for Clifford Miller. I suppose that if you write for a rag like Age of Autism, sponsored by Generation Rescue linking to someone like Miller gives you credibility with the mercury malicia. But it is best to be more discreet if you want to be taken seriously as a journalist writing for a genuine internet newspaper. Oh and one other thing, if you want to be taken seriously it is best to take your readers seriously. Which may be why Kirby corrected the 34,000 figure in his HuffPo version below, but could not be bothered for his AoA readers.

EDIT: Kirby originally posted near identical versions of his post on AoA and HuffPo, both containing the egregious error. Thanks to Matt for providing the link. When people make corrections to published blogs they usual draw attention to it themselves as I am doing now. I thought journalists were supposed to have professional standards that placed them above the citizen blogger in the informational hierarchy. Apparently not.

Let’s look at the numbers. There are approximately 3,400 young people with autism in Scotland, born during the 16 years from 1987-2002. That is an average of 212 cases per birth cohort. But among older people, born during the 31 years between 1955 and 1986, there are only about 600 reported cases, or just over 19 cases a year. Click here to Download file

If the rate of autism in Scotland had remained unchanged between 1955 and today, then there are many, many uncounted adults going without support, services, or even much recognition.

In fact, at 212 cases on average per year, there should be nearly 6,600 people with autism in Scotland between the ages of 22 and 53 years alone. But only 600 have signed up for any help at all, in a country with universal healthcare, no less.

Which begs a few questions: Where are the other 6,000 people in that age group with autism? Why have 1 out of every 11 adults with autism never sought, nor received, any special attention for their particular needs? Why have they not been counted? And why is there no national outrage over the neglect of so many thousands of fellow citizens going without services that they need?

Taken at face value these are reasonable questions to ask. Whether it is reasonable to ask them of a data source compiled by civil servants from existing records is another matter. I will be much more interested in the questions and the answers that will arise from the recently announced Audit of Adults with Autism. Real data, fit for purpose is an all too rare occurrence in debates about autism.

May 11th, 2008 Posted by Mike | adults, autism epidemic, journalism, vaccines | 24 comments

Petition the UK Government for Autism

Barbara Wilson, the National Autistic Society Regional Councillor for the South West has had a petition to the Prime Minister accepted by the office of the Prime Minister. UK citiizens can sign the petition on the Prime Minister’s website

The petition reads:

    We the undersigned petition the Prime Minister to make it
    compulsory for Local Authorities, NHS and Social Care to work
    together to produce a strategy with guidelines for Autism /
    Asperger syndrome  including diagnosis, pathways to services
    and criteria that are realistic and address supportive and
    lifelong support,rather than waiting for people to fall into
    crisis before services respond.  Also to create a national data
    base of the numbers of people diagnosed as being on the ASD
    spectrum.

    for people on the Autism/Asperger Spectrum specifically to
    address the issues on Fair Access to Care and support that many
    consequently fall through the services. Also adopting a clear
    pathway to services for adults on the spectrum who currently
    are referred to as ‘high functioning’ rather than awaiting
    their move into ‘crisis’ To include more preventative and
    supportive approach. We need to have a national data base on
    the numbers of people affected.  Currently services are only
    estimating numbers consequently do not see the need for
    strategies and specific services.

I am sure this petition will strike a chord with many people in the UK and chime with the experience of autistic people and their families around the world. In the UK we have plenty of good practise guidelines for health, education and social care but very little effort on the part of government to mandate these guidelines or provide adequate funding. Sometimes these guidelines come together and are implemented in the provision of children’s services. Even so,

• Over 50% of children are not in the kind of school their parents believe would best support them.

• 66% of parents said their choice of school was limited by a lack of appropriate placements for children with autism in their local area.

• Only 30% of parents of children in mainstream education are satisfied with the level of understanding of autism
  across the school.

• In mainstream schools only 27% of parents say that all their child’s teachers could adjust their approach and
  teaching materials - and therefore meet their legal duties under the SEN and Disability Act (2001).

• Special Educational Needs Co-ordinators (SENCOs) are responsible for co-ordinating provision for children with
  autism in schools, yet 23% of parents are dissatisfied with SENCOs’ level of understanding of autism.

• Over 40% of children with autism have been bullied at school.

• 45% of parents say it took over a year for their child to receive any support. 

• There are more appeals to the Special Educational Needs (SEN) and Disability Tribunal in England about
  autism than any other type of SEN. 79% of parents who appealed to the Tribunal in this survey won their case. 

• Parents say the biggest gap in provision is social skills programmes. 

• 1 in 5 children with autism has been excluded from school, and 67% of these have been excluded more than once.

• Only 53% of young people aged 14 to 19 years have transition plans, falling to just 34% of students in mainstream schools.

Source: Make Schools Makes Sense Autism and education: the reality for families today. (NAS 2006)

The Makes Schools Make Sense Campaign did make a difference. The government has responded to our concerns and made a number of commitments designed to improve education for autistic children in England. That still leaves the rest of the United Kingdom. But it is a start.

If the situation for children is bad, then for adults it is dire. This year, the Think Differently About Autism Campaign is focusing on adults under the slogan “I exist” Its main points are that,

• Nearly two thirds (63%) of adults with autism do not have enough support to meet their needs.

• 92% of parents are worried about their son or daughter’s future when they are no longer able to care for them.

• 61% of adults with autism rely on their family financially and 40% live with their parents.

• 60% of parents believed that a lack of support has led to higher support needs later on.

• At least 1 in 3 adults with autism are experiencing severe mental health difficulties due to a lack of support.

 Source: I Exist. The message from adults with autism in England (NAS 2008)

Barbara’s petition can only help to focus attention on these problems. Autistic people and their families, along with autism professionals and advocacy organizations spend a lot of time arguing about important issues like causation, cure and the various interventions that are supposed to help autistic people fit in with society. But while we may disagree on how to assist autistic people in coping with society, we should all agree to support Barbara’s petition and campaign to make society better able to understand and cope with autism. 

NB. Throughout this blog post I refer to England and link to materials pertaining to NAS campaigns in England. This is a consequence of the different forms of government that pertain throughout the United Kingdom and the way these differences impact upon the provision of services. There are parallel campaigns in Scotland, Northern Ireland and Wales that take account of these differences.

April 23rd, 2008 Posted by Mike | Autism rights, National Autistic Society, adults, autism advocacy, disability rights, education, government, parents | 4 comments