From failure to success: how people are fighting back against fetal alcohol specrum disorder

This blog is my report from the 6th International Conference on Fetal Alcohol Spectrum Disorder in Vancouver in March 2015.

Alcohol. It makes us merry, loosens social constraints. It’s sold to us in a bewildering array of forms and is marketed incessantly to us as soon as we can legally drink. However, it is arguably the most abused drug in the world.

Excess alcohol damages our brain, heart, liver, pancreas and immune system and causes a variety of cancers. According to the World Health Organisation, 3.3. million deaths every year are attributable to alcohol abuse and 139 million years of healthy life is lost worldwide.

Drinking rates are rising, especially in women. According to prizewinning author and recovered alcoholic Ann Dowsett Johnston, some female students are now playing drinking games of “competitive blacking out” and some women are now getting chronic liver disease in their 20s. Moreover, these trends are not confined to any single socioeconomic group. At the heart of the problem, women are drinking alcohol as self-medication for depression, anxiety, loneliness, trauma and abuse. As Ann says, “alcohol is the modern woman’s steroid”.

This is sounding alarm bells because half of all pregnancies are unplanned and when consumed in excess in pregnancy, alcohol causes malformation of the embryo. From just 3-4 weeks old, a 1mm embryo is susceptible to alcohol even before a woman may know she is pregnant. As a result, a child is born every 30 seconds with a major brain disorder due to prenatal alcohol exposure (source, Denis Lamblin).

Brain disorders form part of the diagnosis of fetal alcohol spectrum disorders (FASD), which is an umbrella term covering the spectrum of physical, behavioural and developmental outcomes that may occur after exposure to alcohol in the womb. Children with FASD have recognisable facial characteristics, such as a thin upper lip, small lower jaw, short nose, a flat midface and an indistinct philtrum, the groove that runs from the nose to the mouth.

fas_face-revisedLatest research has shown that alcohol slows down the development of a structure that forms during human development, called the neural crest, which gives rise to a diverse cells including the muscles and bones of the face and the certain parts of the brain. It effectively slows down development of all these structures meaning that they are often incompletely formed. 

Children born with FASD are at a huge disadvantage. More than 60% of kids with have been physically, sexually or emotionally abused (Charles Raineki). Nine out of every ten children with FASD are diagnosed with a psychiatric disorder. Youths with FASD are 19x more likely to be incarcerated and are much more likely to be the victims of crime themselves (Svetlana Popova). According to the National Organisation fior Fetal Alcohol Spectrum Disorders (NOFASD) “FASD is referred to as the ‘invisible disability’ as it often goes undetected, whether it be overlooked, ignored, attributed to another known non-genetic condition or even simply blamed on ‘poor’ parenting or post birth environments.”

What stood out for me at this conference was that delegates represented all stakeholders: researchers, doctors, social workers and even those directly affected by FASD. This gave the conference an emotionally-charged atmosphere. There was laughter and there were tears.

We heard the compelling life story of Paul Burke, father of a boy with FASD. He introduced his qualification as “OCD, ADHD and a DAD.” He stood in front of hundreds of people and admitted “I carry shame, I fed her drugs and alcohol when my wife was pregnant”” and followed it with “What do you do when your child says Daddy, why am I the way that I am?” and Daddy I don’t want to live anymore?”

We heard from Ann Dowsett Johnston that there are many reasons why a woman drinks even after she has discovered she is pregnant. Apart from the reasons mentioned above, women cite peer pressure, social norms and, as we have heard, pressure from their partners. One counsellor told me that one woman said that she couldn’t quit because her husband had told her that if she did, he would go with another woman.

We  heard of the many advances being made into characterising FASD using tools such as magnetic resonance imaging (MRI) , which showed that alcohol slows down the flow of “traffic” along the brain’s “superhighways” that connect different brain regions (Michael Charness and Kristina Uban). We saw the latest three dimensional facial scan data from Peter Hammond. We also saw how the two types of data can be superimposed and how studying developing rats could aid in our understanding of how FASD develops.

Research-Projects-6-300x225Joanne Weinberg presented data showing that prenatal alcohol exposure in offspring of rats showing twice the human legal limit for driving resulted in prolonged inflammatory responses to infection, even as adults. This may reflect that children with FASD have a higher risk of immune disorders. The brain has its own immune system and its own immune cells – the microglia, which ‘tidy up’ neurons that are “past their sell-by date”. Fulton Crews showed that alcohol exposure renders more neurons inactive and mobilise many more microglia than usual, thus disturbing the status quo in the brain’s immune system.

Another exciting topic presented was how environments can interact with genetic sequences. We are all carrying genetic ‘risk’ variants that are only ‘activated’ when you encounter a specific environment. Thus, genetic knowledge could eventually lead to avoiding specific environments. Tatiana Faroud showed a couple of examples that she has discovered. Canadian researcher Michael Kobor presented unpublished data of how alcohol can get “under the skin” and change epigenetic dimmer switches controlling gene activity.

In an exciting development, Cynthia Kane found that an anti-diabetes drug can prevent immune activation in the brain in an animal model, showing a faint glimmer of hope for future treatments in humans.

A great success story came from here in Australia. June Oscar told the amazing story of how, in the remote Western Australian town of Fitzroy crossing, she mobilised the local aboriginal community to rise up and say “enough is enough” to the high rate of FASD and alcohol-related violence, ill-health and suicide. In the Lililwan (“all our little ones”) project, she achieved a change in liquor licencing laws, and was successful at getting rid of “cowboy cops” from the police force, all despite encountering vilification, threats and ignorance.

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June helped establish the Marulu (“precious and worth nurturing”) Unit  that offers help to parents and caregivers of FASD children and promotes  a “no alcohol” messages. We heard from paediatricians James Fiztpatrick and Liz Elliott on how things are slowly being turned around, for example the proportion of healthy birth weight babies is rising. However, there is much still to do, and all despite the government refusing to continue funding the project. James eloquently and passionately talks about the issue in this TED talk.

grogWe heard a similar story from Carolyn Hartness, a Native American, who is revising traditional cultural practices to help heal the “soul wound” of past social injustices, helping to tackle the root of the problem of alcohol abuse. Her culture taught her that “we are all responsible for the health of the next seven generations” and recommended “Even if you don’t care enough about yourself, care for the next generation”.

These messages wee echoed by the presence of multiple support groups who were given ample space among the commercial stands, which is a rarity at conferences. One of the most powerful campaigns was the “Too young to drink” campaign by Fabrica.

TYTD

Support groups also used the power of social media to share their message, as illustrated by Yours Truly.

jeffAll-in-all, this was a great conference in which I was immersed in the subject matter that I am currently studying. It made me  understand the problem and the reasons why research can eventually lead back to the community.

What is autism?

The United Nations has declared that 2 April each year will be World Autism Awareness Day, with an aim of bringing more attention to the condition and help give a voice to the millions of individuals who are undiagnosed, misunderstood or looking for help.

An estimated one in 100 people has autism and autism is diagnosed in almost four times as many boys as girls.

Just as autism is a spectrum of disorders, there are many answers that add up to give the bigger picture of autism. For this I enlisted the help of a number of different autism experts: doctors, psychologists, people living with autism and support groups. Thanks to everyone who gave up their time.

This blog is for all those who wish to know something more about the spectrum that is autism. I have provided a number of links for those interested in finding out more.

 

Doctors and scientists

“Autism is a description of behavioural characteristics which may bring a person great challenges but also great strengths,” Dr Lauren Taylor, a Psychologist from the University of Western Australia. Lauren recommends people seek information from the National Autistic Society, the leading UK charity for people with autism.

“Autism is term that describes a certain pattern of social, communication and other behaviours in humans, and all of the wonders and challenges that these bring.” – Professor Andrew Whitehouse, a psychologist. Andrew represents the Cooperative Research Centre for Living with Autism Spectrum Disorders (Autism CRC).

“Autism is an umbrella term for a set of highly heterogeneous neurodevelopmental conditions which share difficulties in social communication and restricted and repetitive behaviours and interests. These are generally present from early in life with onset variable over the first two years. In the absence of known causes and cures the best approach to supporting individuals with autism is early identification, diagnosis and early intervention. Most people with autism will need some supports throughout their lives.” – Professor Cheryl Dissanayake, Director, Olga Tennison Autism Research Centre, La Trobe University

“Autism is when subtle changes in neuronal wiring turn everyday social interaction and sensory processing into a monumental challenge.” Elisa Hill – University of Melbourne. Elisa recommends the Simons Foundation Autism Research Initiative (SFARI) web site.

“Autism is a spectrum of developmental conditions, caused by a variable and complex combination of genetic and environmental factors, in which altered brain maturation affects various behaviours, including social interaction and communication”. – Professor Tony Hannan, Florey Institute of Neuroscience and Mental Health, Melbourne

 

People living with autism

“Autism is a difference in experiencing, being and doing” – Dr Emma Goodall who is on the autism spectrum.

“As an autistic woman, wife and mother, autism is just a different way of sensing the world. No cure needed.” – Tina Richardson, person on the spectrum.

“Autism is part of what makes me me. I like being me so it’s hard to say it in overly negative terms” – Jeanette Purkis, also on the autism spectrum

“The good, the bad and everything in between.”- Dr Sara Hassan, mother. Sara also went on to say:

“People often wonder what it’s like having a child with autism. It’s best described as follows: it’s having a child with the impulsivity of a toddler but with the strength of an adult. You are constantly on your guard, during every waking minute. It’s the inability to truly relax at the park or at the beach. It’s rejecting kind invitations to friends’ homes because you cannot deal with the chaos that may ensue when your child’s impulsivity rears its head. It’s the staying up at night worrying who will take over the reins of care once you’re gone. It’s the crippling fear of expanding your family, because one child with a disability is hard enough. It’s the disdainful stare of strangers devoid of understanding or compassion. It’s the tears of gratitude at every small accomplishment. It’s the promise that one day, every tear, every hardship, every sacrifice, will be worth it. It is the kindness, compassion and support of those around us that make this journey bearable.”

Next, in the three awesome YouTube clips below, young people talk about what it’s like to live with autism and advise on how to treat a person with autism with respect and dignity, like you would any other person:

Just Like You , Spectrospective and ‘In My Mind’.

Finally, read this guide: How to Explain Autism to People .

Watch, read and learn.

 

Support groups

AMAZE is the peak organisation for Autism Spectrum Disorder in the state of Victoria. Here is an abbreviated version of their definition of autism:

“Autism Spectrum Disorder (ASD) is a developmental condition which affects individuals in two main areas:

  • Individuals have impaired communication and social interaction
  • Individuals have restricted, repetitive patterns of behaviour, interests or activities

ASD affects the way that individuals are able to interact with others and they often find the world to be a confusing place. Difficulty communicating can result in ‘melt downs’ – this differs from a tantrum as the individual does not choose to have a meltdown.

Individuals with ASD often have sensory sensitivities – they may be under- or over-sensitive to any of the five senses.

Every individual with ASD is different.

Some people with ASD have other conditions as well, such as speech and language difficulties, intellectual disability, sleep problems, attention problems, epilepsy, anxiety and depression and difficulties with fine and gross motor (movement) skills.”

 

Other useful and trusted web sites

The Raising Children Network is an award-winning website that connects Australians with tips and tools for everyday parenting, from pregnancy to teens. The Murdoch Childrens Research Institute provides expert content and is a member organisation of Raising Children Network.

The website’s information on autism spectrum disorder (ASD) describe it as “a group of conditions that cause people to have difficulties with social communication, to have narrow interests and repetitive behaviours, or to be over-sensitive or under-sensitive to taste, touch, sight or sounds.

They also say that autism spectrum disorder is “a brain-based condition – that is, where the brain hasn’t developed in a typical way.”

They also highlight that:

“The prevalence of ASD has risen since the 1990s. Research suggests that the apparent increase is at least partly because of:

  • increased awareness about ASD, so more cases are being identified
  • changes in the criteria for diagnosing ASD.”

They go on to say that:

“Evidence also strongly suggests a genetic basis to autism spectrum disorders – that is, the condition might come from the complex interaction of several genes involved in brain development. One specific gene is unlikely to be responsible for ASD. Rather, it might be that several genes combine and act together. Researchers have found many possible genes that might play a role in the development of ASD. It’s also possible that different gene combinations might explain the differences seen in ASD – for example, why one child is more sensitive to sounds than another.

We don’t yet know exactly what causes autism spectrum disorder. In fact, it’s suspected that there might be several causes. Among these are brain development and genetic factors. ASD is not caused by anything that parents do or don’t do while raising their child”.

Their support for parents:

“Any young child might behave in the ways listed above at different developmental stages. This isn’t necessarily a sign of ASD. You know your child better than anyone – the key is to talk to someone if you have any concerns about your child’s development.

If you’re concerned about your child’s development, talk to your health care provider about a developmental assessment. Finding out for sure is the first step to helping your child and getting services and programs suited to your child’s needs.

It’s important to get help and support as soon as possible. The sooner children get intervention services, the more effective these services can be.

A paediatrician, psychiatrist, psychologist or other professional trained in ASD can diagnose ASD. They’ll use a combination of behaviour tests (watching the child play and interact) and interviews with parents about the child’s development.”

Suggested Raising Children Network links:

New links from Publichealthcorps December 2016

This blog will also appear on the Murdoch Childrens Research Institute blog