results in sufferers being good at small talk but without substance; a kind
heart but a violent temper; complex needs but no insight; a small frame with big
expectations and perhaps saddest of all, a damaged mind with a beautiful face?
Anne Russell 2005
Alcohol and Pregnancy – A Mother’s
Responsible Disturbance – First Edition
The sentence above was published in my first book,
Alcohol and Pregnancy – A Mother’s Responsible Disturbance. Since then it
has worked its way around the world and back to me with a comment from a man
living with FASD. He was offended anyone would say that he ‘suffered’
from FASD – he didn’t. He managed his condition without suffering. I am grateful
for his comment as it offers a positive perspective on a condition that is often
viewed as quite negative.
I acknowledged that the word ‘suffering’ may not have been
the right word for him, but it is the right word for my son and it is the
right word for many people with FASD. Those living in remote areas, individuals
without a diagnosis – unrecognised and unsupported – trying to manage their
lives alone until they can no longer endure the consequences.
I would be the happiest person on the planet if nobody
suffered from FASD but that, unfortunately, is a pipe dream.
It’s a diverse condition with a wide spectrum of effects
ranging from the incredibly complex to the almost wholly functional. For those
families with the more challenging effects, it’s not just the complexity of a
person’s needs over his or her lifespan, it’s also the sheer frustration that
they experience when their child is refused FASD-informed support services and
enlightened diagnosis and planning.
While some organisations are keen to train staff on FASD so
they can better support clients with the symptoms of FASD, others don’t seem to
understand that children who look neuro-typical can have a disability. There are
far more people with FASD than most can imagine. They are struggling with
inappropriate diagnosis, unsuitable medication, harmful therapies and misleading
and hurtful comments.
Few medical professionals seem to know what to do with a
child, adolescent or adult with FASD other than diagnose them with ADHD and put
them on Ritalin. I’ve actually seen eyes roll when I have tried to talk about
FASD in relation to my own family. I’ve been stressed and depressed from years
of rejection for services and ignorance, and so have become tearful. In the
world of FASD in Australia, tears do not seem to evoke compassion. To many, they
are a clear indicator that the mother herself has the problem, not her child who
can look and behave as though completely neuro-typical for short periods –
perhaps even the length of time it takes for a doctor’s consultation. Those
children who show clear signs of hyperactivity are diagnosed with ADHD on the
Families live with FASD and love their affected children.
We suffer when the teacher tells us that our child is lying and stealing even
though she has been told that it is a symptom of FASD and it is not an
indictment of the child or his parents. To those who do understand, it is called
confabulation and misinterpreting ownership, not lying and stealing, and its
source is brain-based, not values-based.
This is when parents suffer. We suffer when the teacher
wants us to do something about it otherwise our son will be in detention every
day for the next month. We know that reward and punishment don’t work but others
believe that if they punish the child enough, eventually something will stick.
What sticks is anxiety and depression which can lead to self-medication and a
lifetime of addiction and pain.
We know that our children try so hard to please so we all
suffer when we see that their anxiety has outweighed their desire to persevere.
This cycle continues until the child has been inculcated with the certainty that
she is worthless, inconsequential and stupid. This is usually achieved without
malice, but the lifetime consequences are the same.
Children with FASD leave school early to get away from the
pain. They try to get work and because they are so good at talking, they do. But
it’s a hard lesson when they find that nothing has changed. The environment is
different but the experiences are the same. Their mental health suffers and
strengthens their addictions. Parents know something is wrong, and doctors
discuss parenting classes. Nothing seems to work, timeout has no effect, and
pleading just encourages more meltdowns. As they get older, they become known to
the police and eventually they do something that can’t be ignored.
Whether or not ‘suffering’ is the right word, FASD can have
far-reaching consequences for the individual, the family, and everyone with whom
he or she is likely to come into contact.
Foreword 2nd edition – Dr Doug Shelton
DR DOUG SHELTON, MBBS DIP PAED FRACP
CLINICAL DIRECTOR, COMMUNITY CHILD HEALTH SERVICE LINE DIRECTOR, CHILDREN’S
SERVICES, SPECIALTY AND PROCEDURAL SERVICES, GOLD COAST HOSPITAL HEALTH
SENIOR LECTURER, GRIFFITH UNIVERSITY COMMUNITY CHILD HEALTH
FASD is permanent diffuse brain injury caused by prenatal
exposure to alcohol. The underlying brain damage cannot be fixed. FASD is more
analogous to cerebral palsy or stroke than it is to mental illness.
I am now firmly convinced that FASD is
relatively common [2%-7%], mostly undiagnosed, and leads to terrible outcomes
including suicide, early death, substance abuse, unemployment and incarceration.
The prevalence of children in statutory care with FASD ranges from 6% to 28%
depending on the jurisdiction. The annual cost of a child with FASD in
out-of-home care in Canada is up to $2,000,000 Canadian in their lifetime with
no rationale that the same costs would not be true in Australia.
Australia has minimal investment into FASD
prevalence and diagnosis but no investment in treatment. Australia has no
treatment programs for FASD. Thus, once diagnosed, we do not have anywhere to
send these children for management or treatment and no local resources to offer.
The only Australian resources are two national organisations, the unfunded
Russell Family Fetal Alcohol Disorders Association and the minimally funded
NOFASD Australia. Both organisations are struggling to adequately support the
huge number of parents and carers begging for advice, support, reassurance and
People with FASD have some of the worst
outcomes of anyone in our community. Once diagnosed, parents/carers must have
the skills to intervene and advocate for their child in the education system,
the mental health system, the health system, the disability support system and
probably the police, justice and corrections systems. Until there are
appropriate interventions for children with FASD they will continue to have
terrible outcomes, many of which can be prevented or ameliorated.
Intervention for children with FASD is a
lifelong priority; the condition does not necessarily diminish when children
reach adulthood. Parents and carers desperately need an Australian ‘How To’
guide that will map out a path forward and help them to plan a lifetime of
intervention shifting the odds toward better outcomes. This book is that guide.
Parents living with FASD reading this book will see similarities in their own
situation through Anne’s and will be able to better advocate and support their
own children by using strategies Anne has found helpful. If not Anne’s story
then perhaps one of the other fourteen stories that are found in the latter half
of the book. All will be helpful.
Anne Russell has a proven track record in
advocacy and support for children with FASD and their families. Anne has
accurately identified the complete absence of local intervention options and
hopes to fill this gap by updating her successful first book with a second
edition − Alcohol and Pregnancy: My Responsible Disturbance. The second
edition is a combination of her first and second books and the culmination of
living with FASD for 34 years and supporting other families for 16. I know it’s
Anne’s goal to help people understand FASD through her own lived story and to
raise awareness of FASD in Australia.
This is an exceptionally honest account of a family living
with FASD, well written and informative. It is not only good reading but will
provide parents with a variety of in situ strategies, accommodations and
interventions along with examples of behaviour and situations which will
resonate with anyone living with this condition.
In this book, Mick and Seth have agreed with and
approved all references with respect to their experiences, their activities and
their lives. From the very beginning of our journey with FASD they were willing
to stand up and be counted about the effect it had on them.
I admit my
objective has always been to reach the broadest audience possible given the
critical nature of this information. The more we talk about alcohol and
pregnancy, the more likely we are to be successful in reducing the high number
of babies born daily with a diagnosable injury from prenatal exposure to
alcohol. In Australia, that number stands at a very conservative 40.
from Mick and Seth, this book, like many medical and health-related journal
articles, could have been clinical and dispassionate. But instead, I have been
told, it is powerful and evocative.
In addition, it is
important for people to understand that there are such vast variations in
effects that it is impossible to predict the level of injury. The contrast
between Seth’s and Mick’s life stories highlight this point well. What we can
say is that if we know one child with FASD we know one child with FASD.
Those of us who
understand FASD are passionate about helping to increase the knowledge base of
Australian parents and parents-to-be and especially keen to ensure that any
information disseminated is accurate and consistent. Training is critical.
However, training without a parent, caregiver or person with FASD as facilitator
or co-facilitator can result in participants having an incomplete or
one-dimensional understanding of FASD.
I believe that
every research project, every study group, survey, panel, board, and diagnostic
clinic must have at least one parent, caregiver or individual with FASD
representing the perspective of the consumer.