Autism: mysteries and myths and the need for research
Scope sheds some light on a condition which, at £32 billion per annum costs the UK more than heart disease, stroke and cancer combined.
In its 2007 paper which successfully set out the case for an Autism Act for Northern Ireland Autism NI put the annual cost for Northern Ireland at £840,000,000. Using the same calculus that cost has now risen to £960,000,000. Given that in 2007 the autistic population of Northern Ireland was 17,000 and that today it is estimated to be more than 30,000 spending is not keeping up with need.
Little is known about the causes of autism or even whether the rising numbers is down to increasing prevalence or better diagnosis and awareness. Although support can help those on the spectrum, this is a lifetime condition for which there is no known cure. There is even a debate led by some autism activists who don’t even think in terms of cures, but of celebrating diversity.
The latest statistics show the prevalence of autism (including Asperger Syndrome) in our school population. As elsewhere in the world it is rising – from 1.2% in 2008/2009 to 3.3% in the current school year. They appear to suggest that prevalence in Northern Ireland is the highest in the UK.
The reasons for such increases is not known but has been the subject of intense debate, controversy and even scandal.
Some scientists have speculated that environmental factors are at play, there have been claims that pesticides and other pollutants are linked. In 1998 Andrew Wakefield published what is now a discredited paper claiming a link between the MMR vaccine and autism. He was subsequently struck off the medical register for unethical behaviour, misconduct and dishonesty. Wakefield’s claims helped boost the anti—vaccination movement which has led to the re-emergence of measles and whooping cough. Children have died as a consequence of not being vaccinated.
Recent research carried out in Sweden and published in the British Medical Journal suggests that autism is not on the rise and that the reason for the increase in recorded prevalence is more accurate diagnoses from clinicians. But there’s no definitive, universally accepted answer yet.
There is evidence that genes are a factor in some forms of the condition. It is not linked to emotional deprivation or the way a person has been brought up.
For the moment, at least, the cause or most likely causes, of autism remain a mystery.
As too does the much higher prevalence in males. The Northern Ireland paper found that whilst 5.1% of boys in schools had autism, the figure for girls was just 1.5%, this makes boys three times more likely to develop the condition.
Theories abound on this. They vary from teachers under-diagnosing autism in girls, to diagnostic tools which work well for males and thus misdiagnosing females, to the “extreme male” theory that ascribes the condition to the impact of foetal testosterone on brain development. This too is a mystery, as is the comparatively high incidence of gender dysphoria amongst the autistic population.
The Northern Ireland report contains two quite puzzling statistics to add to the unanswered questions. The first shows that autism is more prevalent in urban than in rural areas and the second that there are significantly higher levels in areas of multiple deprivation. It shows that 14% of children identified with autism were from the most deprived Multiple Deprivation Measure (MDM) decile in Northern Ireland, while 8% of children identified with autism were located in the least deprived decile of the country.
It also states: “The rate of autism in school aged children in the 10% most deprived areas in Northern Ireland stood at 4,550 cases per 100,000 population in 2018/19. This was almost three fifths (58%) higher than the regional average, 2,879 cases per 100,000 population, and more than two fifths higher than the rate in the 10% least deprived areas (3,200 cases per 100,000 population).”
The scale of the difference between deprived and more prosperous areas is striking. What is striking about this is that there appears to be no existing research to support links to autism to poverty or urban living. Given the scale of the discrepancy it is important that the Department of Health commission research to find out what is behind this. Could it be greater knowledge in urban areas, better support and diagnosis? Or are there other factors in play?
At Scope we have previously written about cancer and the huge strides that have been made in understanding cancers, developing treatments and making it in so many cases a condition people die with rather than from.
Autism is not at the same stage.
Getting at the cause or, more correctly, causes will be more complicated than cancer. Autism is officially described as a lifelong developmental disability that affects how people perceive the world and interact with others. Yet even that is controversial, with some autistic campaigners saying it is not a disability at all and should be seen instead as a “condition.”
Autistic people see, hear and feel the world differently to other people. Autism is not an illness or disease. It is also a spectrum condition, meaning that it affects different people in different ways. Some also have mental health and or learning difficulties which means that they require different levels of support.
Although the existence of the condition is well known there are many misconceptions. Only 16% of people with autism feel that the public understand them.
There is no biopsy that can be performed, no blood test, no X ray that can provide the kind of evidence that pathologists can use with cancer.
Just as the causes of autism are still not known, so too do treatments and supports vary. No two people are the same and so therefore even opting for the right strategy to support someone on the autism spectrum can be a challenge.
And this is further complicated by a range of quacks attempting to prey on people with the condition.
Last year the Westminster Commission on Autism published a disturbing report exposing charlatans peddling often highly dangerous “treatments” and “cures”. It cited the huge number of interventions available and concluded: “It can be difficult to know which interventions are genuine, approved, effective and ethical and which are harmful, unapproved, unethical or a waste of money.”
These include crystal therapy, ear candles, vitamins, spiritual intervention, aromatherapy, exorcism, stem-cell transplants, exposure therapy (including slapping), acupuncture and some cases where people were encouraged to drink bleach.
The Commission pointed out that there was no one single authority that people could report concerns to and recommended an inquiry into the peddling of unsubstantiated treatment and cures. Its paper includes a useful chart on warning signs that treatments may be harmful. These include those that require faith to work and ones which purport to be cure-alls.
The condition is clearly one which needs more research: both to understand the causes of autism and to help improve interventions to make life better for those on the spectrum.
Yet researchers from the London School of Economics have pointed out that we spend just £4m per year on autism research, as compared to cancer £590m)heart disease £169m or stroke £32m across the UK. That means that we are spending just £180 on research for every million on care. Given the gaps in our knowledge and the fact that autism is a life long condition that simply does not make sense.
Further information about Autism in Northern Ireland is available through Autism NI at autismni.org.
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