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“I’m like a wasp in a jar – I see and hear people around me but when I try to get into their world I just keep hitting the glass.”
THESE ARE THE words of a person with autism – the complex developmental disorder that affects one in every 100 people worldwide.
Autism has long been known as the ‘hidden condition’ because it may not be immediately evident in people who have the disorder. The result is a sector that has been historically underfunded, meaning its services lag far behind that of other disabilities, often leaving people with autism unable to reach their full potential and live independent lives.
Enabling people with autism to break through the metaphorical glass jar is at the heart of the Autism Bill which I brought before Dáil Eireann last Friday. The Bill received unanimous cross-party support in the chamber and was accepted by Minister for Health James Reilly, who acknowledged the need for a national policy response to autism. Tánaiste Eamon Gilmore said it was an ‘historic day for people with autism’ and that it marked ‘a first step in making autism a national priority’.
As a local TD for the constituency of Cork South-West, I have encountered too many families who are frustrated with poor access to autism services locally. Their stories struck a chord with me and it was clear that something had to be done on a political level to address their very genuine and sincere concerns.
Ireland has been trailing its European counterparts for many years in this particular policy area. Since 2008, Autism Acts have been introduced in England and Northern Ireland, while Wales and Scotland implemented national autism strategies which I understand are working well.
Now the Irish Government has fallen into step with these jurisdictions by approving an Autism Bill that provides for a national autism strategy. It aims to ensure a unified standard of autism care nationally and that services are delivered in a more consistent manner.
Currently autism services in Ireland are under-developed and lack co-ordination. A HSE review published in February 2012 found that autism services varied from patchy and ineffective in some places to comprehensive and integrated in others. A national autism strategy would put an end to this postcode lottery system while also ensuring equity of service and early intervention.
Measures such as an autism awareness campaign and clear pathways of support for families are covered by the strategy. It also provides for the establishment of a data collection system and the commissioning of research to record and report the incidence of autism here. The lack of available data on autism in Ireland is something which stakeholders repeatedly flag as being a key problem in terms of planning for future service needs and something which further differentiates it from other disabilities.
A fundamental aspect of the autism strategy is that it will be cross-Departmental and will require various ministers to plan and implement strategies in their own sectoral areas. For example, there is scope for the Department of the Environment to ensure the type of housing provided to people with autism is commensurate with their needs and abilities. I also believe there is a role for the Department of Jobs to devise job-ready programmes for adults with autism who may progress through the education system, or to encourage businesses to run special programmes for hiring autistic employees who may possess certain valuable skills such as focus and attention to detail that are common characteristics of the condition.
Not only is this legislation autism-specific, it is also adult-specific. Many Irish parents with experience of autism will tell you that appropriate services cease to exist once their child turns 18 and that there are no transitional arrangements available to ease their child into the adult services. Many parents have likened this experience to ‘falling off a cliff face’ and the vacuum is thought to be the main reason why adults with autism have high rates of depression, unemployment and social isolation.
Why does this ‘cliff face’ occur? As adult services are organised into separate mental health and learning disability teams, adults with autism often end up falling between two stools because autism is neither a learning disability nor a mental health condition – it is a developmental disorder (although it does happen from time to time that people with autism have an accompanying learning disability and/or mental health needs). Therefore the structure of adult health services effectively discriminates against adults with autism and is a leading cause of inequality for them.
An autism strategy will address this anomaly in the system and ensure that parents won’t have to endure the awful uncertainty of not knowing how the needs of their autistic child will be met once they turn 18.
Last Friday was a historic day for people with autism in Ireland. It marked the first time in the history of our State that an Irish Government acknowledged the rights of citizens with autism and those of their families. It will ensure that future Governments will be obliged to meet the needs of these people – whether those needs are of an educational, social, health, economic or environmental nature.
This legislation is our first step in making autism a national priority in this country and I hope it will be a springboard for many new developments in the autism field in Ireland. I know that we will all look back on this monumental legislative development as the first step in a truly historic journey towards breaking the glass jar of autism.
Deputy Michael McCarthy is a Labour Party TD for Cork South-West and is also Chair of the Oireachtas Committee on the Environment, Culture and the Gaeltacht. McCarthy was elected to Dáil Eireann in 2011, having previously served as a member of Seanad Eireann for nine years. He is also on the Constitutional Convention. McCarthy first entered public life in 1999, when he was was elected to Cork County Council for the Skibbereen Electoral Area, making him the youngest county councillor in the country that term.
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Excellent article. Only a few weeks ago we had newspapers going mad over a massive % increase in the tax burden on the lowest paid, failing of course to realise that before the USC, the lowest paid paid little or no tax to begin with!
I am 94% confused and 6% bored…….
This assumes that confusion and boredom are mutually exclusive and that one cannot be both bored and confused at the same time. If you view boredom as a subset of confusion you should be able to restate your mental condition with more numerical clarity. Hope that clears it up.
excellent and timely piece. I have always been of the opinion that journalists should do stats in uni considering how intergral they are to modern journalism and how bad they are understood.
Very interesting article.
George Orwell demonstrated in his novel 1984 how meaningless statistics can manipulate people. Public relation and advertising companies have made fortunes using statistics to help their clients rip off people. Don’t forget that this slot machine will pay out 75% of the time.
It’s a well known fact that 63% of statistics are made up on the spot…
I am 94% confused and 7 % bored, in comparison to the last contributor!
The HIV example assumes there are no false negatives. Is that right?
Actually, it’s slightly more complicated than that. A HIV test has such a high positive predictor value (PPV) that it is virtually impossible to get a false negative. So this leads to the crazy situation where a positive test only implies 50% chance and a negative is zero!
I left out a slight detail for brevity mind; I’ve talked about the low risk group which is more Irish folk. But consider IV drug users. Their rate of infection is 1.5% meaning if 10000 got tested, you’d expect 150 with it flagged positive and one false positive. So your odds on having the disease if you’re high risk with a positive test – 150/151, 99.37%. Much worse than the 50% for low risk!
Bottom line – stats in isolation can be very misleading and we always need a reference class!
If you look up Bayesian probability you’ll see how to incorporate false negatives into the formula.
As an aside, the use of percentages in relation to temperature on the Celsius or Fahrenheit scale is ill advised because they are not strictly quantities in the way that cents or inches are.
In all fairness, while scientists and other professionals might get the stats wrong very occasionally in scientific journals, it’s basically irrelevant in context of the ongoing dog’s breakfast which is the reporting of any kind of numerical information by regular journos, most of whom seem hopelessly innumerate.
Im in 110% agreement with this article…
My head hurts
New subject for students……..”statistical engineering”
%ages over 100 have always irked me
I’m 110% behind you on that one! ;)
I’m corrected. 0.01% is 10,000 times 0.0001 = 1.
My favourite is when new sports boast about their rates of growth.
If you start a sport,and 4 people join that week,your growth rate is a massive 400%/week,allowing the 5 of you to briefly claim yours is the fastest growing sport in the world!
One type of journalistic error I often see is the simplistic reporting of performance against expectation. For example, reporting that tax revenues were slightly better than Department of Finance estimates sounds good, but it doesn’t really tell us much. The reports often don’t tell us whether the estimates themselves were high or low (perhaps deliberately low) to begin with or whether the revenues were higher or lower than last year – which would be much more informative.
Another area the newspapers often confuse is changes in rates of increase or fall. For example, a fall in the rate of GDP growth from 2% to 1% might be reported as a fall in “GDP” when in fact GDP has risen.
Great read.
83.25% of these comments relate to how the above article represented itself.
If they used percentage points in a lot of situations it would help clarify things. ie 3% to 4% is a 1 percentage point increase.
ECB increases mortgage interest increases by 1%.
If the rate goes from 3% to 4% that’s a 25% jump. You WILL pay 25% more on your loan – if only it was 1%.
Thank G Charles I see everything in a different light now…….
Good article, there’s a good TED talk here (“Battling bad science”)about the same thing, although in some cases far more sinister applications:
http://www.ted.com/talks/ben_goldacre_battling_bad_science.html
Excellent article,
Nothing is more annoying than the accidental misapplication of statistics and / or the cynical misuse……..except perhaps the complete lack of understanding in the general public. (of which of course they are not to blame)
It should be included in a standard education, outside of science degrees. Anything that highlights this more is to be welcomed.
Good job.
I’m reminded of Disraeli’s famous quote about lies, attributed to him by Mark Twain.
Great article.
This is a really good example. Statistics can be used as evidence in a way that is quite misleading.
At least two hundred per cent of readers know that this headline isn’t true
If you have two loans for the same amount one at 3% for 30years and the other at 4% for 30years, you will pay 33% more for the loan at 4%.
After 20years the 4% loan has cost 21% more, after one year the 4% loan has cost 0.97% more…..
Boom, the power of compound interest!
Stats are wrong in article HIV test is 99.99% accurate. You test 10,000 people. Test gives 10 people with positive HIV test. HIV Incidence is 1:10,000. Thus 9 out the 10 are free of HIV. So the chances of having HIV Is only 10% WITH a positive test.
No, sorry – you’ve made a rudimentary mistake there. 10000 ; 1% is 100, 0.1% is 10 and 0.01% is 1. You’ve mixed up 99.9% with 99.99%. Easy mistake to make…
Ironic title on the piece (then again, there are probably more readers for “We’re all being misled” than “We’re almost all being misled”:)) but a good point very well made, David.
I know I’m coming to this debate long after the party is over but just seen it now and why not?
Let’s assume that FF calculated Lab received an average of 60 minutes and FF 20 mins. The following are valid percentage calculations and statements:
1. Lab have 200% more air time than FF ((60-20)/20 x 100)
2. FF have 66% less air time than Lab ((60-20/60 x 100)
3. Lab have 300% of the airtime of FF (60/20 x 100)
4. FF have 33% of the airtime of Lab (20/60 x 100)
It is not correct, I believe, to state that the statement from FF ‘Fianna Fáil is now getting more than 100 per cent less access to Prime Time than the Labour Party in the same position.’ is clearly wrong (I know you haven’t done so). It is a contorted and contrived recasting of statement no. 1 (FF have 200% less air time than Lab) that is misleading as that comparison you would normally expect to see would be as per statement no. 2. There are no absolute rules when comparing two numbers as to which must be the denominator in the percentage calculation, however there is custom, practice and expectation and clearly they have not adhered to that here (your reference to a faux pas).
However I disagree with you that the underlying problem here is innumeracy. I believe that the problem here is the cynicism of spin. They wanted a bigger number (200% v 66%) so they went for it as it suited their message. They are relying on the general innumeracy of the wider population to get away with it.
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