Alcohol in the frame. Again.

Is alcohol to blame for the ‘autism epidemic’?

Possibly like many if not most other people, I thought Foetal Alcohol Syndrome was a condition that affected the children of alcoholics – those who drank every day throughout their pregnancy or binged regularly. I knew that a couple of glasses of wine with a meal once every week or two wouldn’t do any harm, particularly later in pregnancy. I was supported in that belief by many a doctor and magazine or newspaper article. True, some people said it would be better not to drink but in a context where a glass of Guinness a day was even said to be good for babies because of the nutrients it contained, the total abstainers seemed extreme in their caution.

As the years went on and the question of alcohol and pregnancy began to be discussed more openly, like many women, I worried at the beginning of pregnancy that over-indulgence in the weeks before I realised I was pregnant – what would now be defined as binges, to be honest - would affect the baby. Hyper-emesis or milder morning sickness put paid to any desire to drink at all during the first three or four months and, as the pregnancies progressed and everything appeared to be normal, the concern faded. As with most women, bingeing or heavy drinking never entered into it once I knew I was pregnant but I drank sporadically – never more than two at a time. If the worry about drinking in the earliest stages survived at all to the end of pregnancy, it disappeared completely with confirmation that my babies were healthy and normal. By the time specific learning disabilities were diagnosed – years later - the idea that it might have anything to do with alcohol never occurred to me and, it appears, neither did it to the stream of professionals I have seen in all that time. Not a whisper of a possibility. Nothing, in all the literature I have scoured, the seminars and talks I have attended, the hundreds of discussions with other parents, had ever once suggested a link with alcohol and other learning difficulties. Two articles in a magazine titled ‘The Frontline of Learning Disability’published last week have changed all of that.

Cynthia Silva, Senior Psychologist and Michele Savage, Spokesperson for Foetal Alcohol Support Ireland, have delivered what should be a sobering message to any mother of a child with learning difficulties who has ever taken alcohol at any time during her pregnancy. Prompted by what they have written to investigate this subject, it seems there has been some discussion of it in the Irish media during the last 12 months – that the alarm has begun to be raised here - including in a Prime Time programme. Nevertheless, in 2007 Michele Savage still has this to say:

‘Diagnosis is not a means to attribute blame. There is very little general awareness in Ireland about the risks of alcohol and half of all pregnancies in Ireland are not planned. So much damage can be done by the time a woman attends her GP, not to mention before her first appointment at the maternity hospital.’

The situation was certainly no different in the UK when my last child was born almost eleven years ago. But the crux of the matter, as I understand it, appears to be that alcohol goes on damaging the foetus long after it has been taken by the mother. This is big, worrying news. It is not the case at all, as many people believe, that the mother’s own liver and organs are filtering alcohol from the baby’s bloodstream – it goes directly to the baby within minutes in the same strength that it circulates in the mothers bloodstream. But unlike with the mother the alcohol has nowhere to go – so it is actually doing more harm to the foetus than it is to the mother herself. Moreover, ‘alcohol is more toxic to the foetus than nicotine or any of the other recreational drugs’. The other dangerous misapprehension is that it is safer to drink later in pregnancy when the baby is fully formed. The idea has been circulating for a while that it is only the early months in which the risk of doing damage is high. Research shows that there is specific and serious brain damage, with recognisable behaviours and difficulties associated with heavy drinking in later pregnancy. The brain goes on developing after birth so there is no sense in which it is mature at any stage of pregnancy.

“There is no proven safe amount and no proven safe time for alcohol during pregnancy – the placenta cannot and does not protect the foetus from alcohol. Dr Peter Hepper (Queens University, Belfast) has found that there are concerted differences in responses between foetuses which had, and those which had not, been exposed to lower doses of alcohol than previously thought to be dangerous…The central nervous system is susceptible to damage right throughout the entire nine months of pregnancy, and the reality of the far-reaching effects of alcohol-related neurodevelopmental disorder will not be evident until long after an infant has left the care of the maternity hospital. Although prenatal exposure to alcohol is the leading known cause of avoidable educational disability, only 25% of children with FASD will be thus affected. 7.8 times more Irish pregnant women drink alcohol than their American counterparts. (Barry et al 2006). Given that FASD occur annually in 1% of all US births, Ireland has serious cause for concern, as there is good reason to believe that up to 1800 babies born here each year are at risk of being affected, to a greater or lesser degree, by these avoidable lifelong effects. The government has a responsibility in this area, and it is a scandal that successive Irish governments have been passive for so long regarding alcohol and pregnancy, while now emphasising the benefits of folic acid in prenatal care. Not only does alcohol interfere with the absorption of folic acid and minimises the benefits thereof, the drug does more damage than nicotine or any of the other so-called ‘recreational’ drugs.”*

If you are inclined to dismiss your alcohol consumption as a possible cause of your child’s difficulties, then it might be worth looking at the symptoms of FASD:

*Cognitive deficits, such as memory problems, or developmental delay
*Executive functioning deficits, such as problems following multistep directions
*Motor delays or deficits, such a clumsiness or tremors
*Attention deficits and hyperactivity
*Poor social skills, such as interrupting others and misreading cues
*Behaviour problems, such as aggression or not finishing tasks
*Speech and language specialists

And in case you are still not persuaded to consider the possibility, then the following might finally convince you because the behaviours described overlap almost exactly with the features of Autism/Asperger Syndrome /ADHD and other conditions as they present in many cases:

“The greatest problem often is a marked discrepancy between seemingly high verbal skills and an inability to communicate effectively. The combination of poor self-control and inadequate communication skills create social problems. Many students employ and interpret speech quite literally. These children frequently lack the skills to make logical decisions; they must be taught how to make reasonable choices and given many opportunities to practise. Their difficulties may appear to be deliberate misconduct or attention seeking, while actually being neurologically based problems with memory or comprehension. These students experience difficulty with organisational skills, abstract and conceptual thinking, regardless of intelligence or age. They also have difficulty internalising and generalising rules. This becomes more difficult when every setting the child is in (home/school/community) has different rules. Due to problems of short-term memory and information processing, the child with an FASD cannot remember or apply various rules in specific situations, thus repeating the same mistakes over and over.”**

Perhaps like the majority of people, again, I had no idea this is what FASD looked like. I had seen pictures of children severely affected because of heavy maternal drinking – it was a whole other world of problems. But as with autism, it seems there are degrees of FASD and perhaps out of an intention to alert people to the serious dangers, or because it is only really within the last 20 years that a greater knowledge of it was accumulating, the lesser-affected children don’t seem to have featured in public discussion of this issue. It’s obviously important that people do not rush to the conclusion that FAS is the explanation for their children’s difficulties. Useful information on the diagnosis of FAS is available at the link below, which is to a paper by Caron Byrne, Consultant Psychiatrist at the University of British Columbia, entitled ‘The Criminalisation of Fetal Alcohol Syndrome.’ The title refers to the much higher incidence of imprisonment and social dysfunction among people with FAS. With regard to diagnosis, it can be seen at the link that there are multiple factors involved, often but not always involving noticeable facial features, such as a flattened mid-section on the face and additional folds of skin on the inner part of the eyelids. The eyes may also not be as wide as normal. These symptoms have tended to be the first signs that doctors have looked for and because they are not necessarily present in less severely affected children, many are going unrecognised or mis-diagnosed:

http://depts.washington.edu/fadu/legalissues/CFAS.pdf

Could the increase in the incidence of ASD/ADHD diagnoses be traced to the time when women began to drink like men? The timing fits - that’s for sure. Women of my generation were the first to take the men on where drinking was concerned. It was practically a feminist statement to drink a pint and to shun the ‘lady-like’ half- pint and to match the men, drink for drink. Many of us were determined no longer to be the ‘weaker sex’ and to demonstrate our toughness in every way we could. Friday and Saturday nights were almost always devoted to boozing – down the pub and then off to a disco until 2 or 3. Together with a bunch of other outraged young women, I once staged a confrontation at El Vino’s, the journalists’ pub on Fleet Street in London in the early eighties. They had rules forbidding women either to order at the bar or to drink pints. Many column inches were devoted to El Vino’s blatant sexism in the Guardian and in magazines like Spare Rib, the long since defunct monthly feminist magazine. We found a couple of willing men to order five pints of lager for us and when they brought them back to our seats we drank them ostentatiously, the better to attract the loud argument with the manager which we so much wanted to have. The whole bar got involved and a blow was struck for womankind that night, we were certain.

Then there was the lunchtime drinking culture that was rampant in the eighties. A chain of popular cellar wine bars sprang up all over London and it was nothing remarkable at all to spend a couple of lunch hours every week wining and dining with customers and colleagues. The Friday night after work-scene was a near permanent fixture. Partnerships and pregnancy put and end to all that for most of us, however.

Now, in middle age, with our child bearing years behind us a new opportunity to drink has worked its way into our lives, or rather we have worked it in ourselves: wine. Wine consumption among our generation has soared. I'm a stereotype. Along with many of my peers I have been involved in an on/off love affair with wine. It began in earnest eight years ago with a wine tasting competition in San Francisco, which followed six weeks of intensive ‘training’. The culture surrounding wine is insidious. It’s seen as a ‘respectable’ little mood-lightener and it goes down so sweetly and demurely with food. It’s not ‘drinking’ drinking. If you were seen to be drinking the equivalent amount in spirits or pints of beer, the spectacle of it would jar in a way that drinking wine does not. You can see a bottle off over four or five hours – a glass or two while you prepare a meal; a glass or two while you eat it; a glass or two while you watch the box or do whatever it is you do. Well, it’s not as if you’re hanging around in gutters with a bottle of meths, is it? There is no unseemly behaviour involved. That’s all bullshit, of course - it does its damage whatever way you go about it - however it takes you. Surrounding your drinking with gourmet food and expensive interior design in a leafy suburb doesn’t alter the significance of what you are doing and the danger of making it an inherent part of your daily routine at home will very likely have tempted many a younger woman to have a glass during pregnancy where previously she would have had none. Cracking open a bottle with the evening meal has become the norm for many a young couple.

But now the die has been cast and our daughters are facing into a culture of drinking in which it is wholly unremarkable for them to drink as much or more than the men and for both sexes to routinely drink themselves, literally, into near comas. And yet we now know that women’s bodies are physically incapable of coping with this. Here is one repentant feminist, I can tell you. I wish I could have understood earlier that aping what was possibly the worst of men’s social habits (or aping them at all, come to think of it) was not a particularly clever way of asserting my equality with them or of having ‘fun’. A lot of us would have to admit that alcohol has played a distorting and exaggerated part in our lives considering all that we had to choose from. Before anyone is tempted to let men off the hook, and given the damage we know that alcohol can do to a developing foetus, there has surely got to be a corresponding effect on male sperm –half of the genetic equation. Let’s not turn this issue into another form of woman and especially mother bashing. It’s not that long ago when children with ASD were said to be suffering from ‘frigid mother syndrome’ – an explanation that misogynists everywhere were only too delighted to promote. Are we going to see any research into whether the children of alcoholic men are disproportionately affected?. Might certain learning disorders and disabilities be attributable to alcohol consumption absolutely?

It’s incredibly painful to think that you may have been the cause of your child’s disability – that it was entirely avoidable. The thought of their lives, blighted and disadvantaged for such a reason is awful to bear - little that could make a parent feel worse. Every time they see their child they will be reminded of it – every resulting difficulty for the rest of his or her life will be there to reinforce the feeling, to say nothing of the child’s own difficulties and frustrations. The trouble and worry caused to other people – siblings, friends, other family and the community will haunt parents too. If you don’t have children affected by learning disability then it is worth looking into that bleak place and resolving never to put yourself or any future child you may have at the least risk of ending up there. "If you're pregnant, don't drink. If you drink, don't get pregnant."

There is quite an incentive to go into denial about this problem, isn’t there? So, would that be connected to the inexplicable reluctance/failure to confront this problem publicly – given all that has been known about it for the last ten years or more? Why is it that the people who know about FASD have had so much difficulty getting the information across? Might this issue be the one to deliver a fatal arrow to the heart of our drinking culture? It surely ought to be. But who stands to loose out and why?

The last thing that is needed is to stigmatise the affected children – or their parents. Imprisoning people in shame and despair will not help – parents need to be able get on with it, to confront the problem head on, acknowledge the truth however painful and focus on optimising the possibilities for their children. A supportive environment is the only way that will be possible. If a culture of blame is brought to bear it will drive the problem underground with disastrous consequences not just for FAS-affected people but also for society as a whole. Children whose true difficulties are not addressed will not be able to function properly and given the alarming figures we are looking at a potentially enormous amount of social dysfunction – and all the expense that goes with it - within a very short space of time.

Nevertheless, it’s clear from Savage and Silvas’ articles – and many other studies as well - that many children with FASD are being misdiagnosed. Let’s not add the consequences of denial to a devastating mistake – it’s the children who will end up paying again. That said, if there is no political will to do anything meaningful – to invest in the necessary educational supports and therapeutic interventions then people may find that they are no better off. Our present government has a policy of minimising the diagnoses of ASD/Asperger Syndrome in any case. According to Silva and Savage, FASDs are suffering from even worse neglect because they are not even acknowledged as requiring educational and other supports even when they are diagnosed. In addition to accepting our own possible culpability in the situation, we need to challenge the underlying rationale for this state of affairs, which seems to be that, if the problem is not officially recognised, it doesn’t exist and therefore requires no action. So we have the ludicrouse situation where there is a disincentive for parents to be upfront, for people to actually prefer a mis-diagnosis.

In the US, naturally, they have responded to the situation with zeal: they want to criminalize and imprison mothers who drink during pregnancy. For God’s sake, let’s not get into this here. Inevitably it is poorer mothers who are feeling the brunt of this approach – particularly in areas where rates of drug and alcohol addiction are high. So these children, on top of everything else, end up losing their mothers when they most desperately need them. If we want to blame anything then the thing to blame is alcohol itself and the near religious devotion that we accord it in our societies. From that perspective, most of us share some element of responsibility. As Silva and Savage point out:

“Ireland has the highest level of binge drinking in the EU. A binge is considered to be any time an individual consumes more than four drinks in a single evening. In Ireland for many young women of child bearing age this would be just the beginning of a good night out.”

Is alcohol always to be the defining characteristic of the Irish nation? Road deaths, absenteeism, broken/violent homes, early deaths, teen pregnancies, public disorder, mental health problems and now, possibly worst of all, the loss of normal life for a generation of children are the legacies of our obsession with it. What will the ultimate cost to our society be? Our collective denial on this point is tantamount to a form of national suicide.

Something is causing the widespread learning difficulties which have perplexed us all for some time now. Perhaps it is a combination of factors – but if we are looking for a common cause, what is there that is so pervasive a habit? Vaccinations have been accused and there does seem to be some cause for concern there – however controversial – there is too much first hand evidence to ignore them as a problem. But not even the most fervent opponent of vaccinations would claim they are solely responsible for the massive epidemic of learning disabilities. Alcohol is firmly in the frame. Again.

More about FASD can be found at the Foetal Alcohol Support website which has excellent links to other sites and sources of information:

http://www.fasd.ie/

*Michele Savage
Coordinator and Spokesperson, Fetal Alcohol Support Ireland
**Cynthia Silva, Senior Psychologist

For teachers and parents – report from Trinity College:

http://www.tcd.ie/niid/research/FASD.pdf