An Approach to Psychotherapy For Individuals
with FASD
By Brenda Knight
Individual psychotherapy with children and adults with an FASD
is a vital and productive process. Like any individual, each person
with an FASD is a product of genetics, environment, biology and
temperament. Although we cannot control all of these variables,
we can affect change.
Psychotherapy with individuals with an FASD focuses on the need
to be safe, to effectively learn to cope with daily living experiences,
and to maintain significant healthy relationships. Although it is
standard to view successful psychotherapy as leading to independent
living, effective psychotherapy with this population can be most
beneficial if it focuses on interdependence or acceptance of dependence
on trusted supports.
In being open-minded, the psychotherapist needs to avoid the trap
of limiting her perception of the individual to the characteristics
of an FASD diagnosis. It is imperative that the psychotherapist
pursues an understanding of her client’s:
- spiritual beliefs and practices
- emotional responses to life experiences
- social skills
- capacity to recall life history
- physical health
- cognitive function and adaptive behavior
- genetics
- family history
- environmental factors
- cultural differences
- psychological issues, and
- psychiatric disorders.
Setting the stage for therapy
Progress is obviously impossible if the person seeking treatment
cannot attend the appointment. By creating accommodations to appointment
schedules – such as setting up routine times, writing appointments
on color-coded cards, providing transportation and accompaniment
– a psychotherapist can increase her patient’s attendance.
When seeing a new client my goal is to provide an emotionally and
physically safe environment in which the person can cope with the
sensory input without being overwhelmed. To this end, I ensure that
the room remains consistent throughout the sessions to reduce distractions
and provide a sense of familiarity for the client. The lighting
is soft, the room quiet, and the texture of the furniture gentle
to touch; itchy textures or over-stimulating visual patterns can
be too distracting to this population. The room temperature is adjustable,
and extraneous sounds are blocked out to help maintain the client’s
attention.
I must also consider how I appear to the client. I must be safe,
tolerable and not overwhelming. My clothing must not scream in their
face, my voice must not be bland or monotone, and my body language
must be clear, predictable and congruent with what I am saying.
I need to sit in the same chair, introduce our session in the same
manner, speak at a slower pace, and listen with concern. Although
I am a person who is quick on the uptake, I have to be slow on the
output. I need to talk in concise sentences without the use of idioms,
and use language tailored to the receptive language skills of the
client in order to increase the client’s comprehension and
integration.
In addition, I must demonstrate that I have the patience to wait
and the determination to push the envelope when necessary. Clients
must trust that I am not afraid to hear something traumatic or to
simply sit in silence. In time they learn that they have the freedom
to be themselves, and learn that – maybe for the first time
ever – there is no expectation for something in return. Lastly,
I want them to know that laughter in treatment is legitimate.
I am not there to seduce the individual into a false sense of security;
viewing my office as a sanctuary is for them to conclude over time.
I am there to readily provide eye contact when they want it or distance
when they feel visually suffocated. I need to read their cues without
relying on positive verbal feedback – if they are still in
the room with me then we are doing well.
An approach to therapy for clients with FASD
Treatment for the client with FASD is clearly affected by the therapist’s
knowledge of the effect of brain injury on comprehension, verbal
expression, concentration and memory and behaviour. Approaches to
documenting that information with the client and a primary caregiver
positively affect the success of treatment and follow-up.
I have encouraged parents of children with FASD to initiate therapy
when the child is pre-adolescent in order to establish the groundwork
of a therapeutic relationship while the child is managing, and likely
not yet in serious crisis. In this way the therapist can be seen
as an ally for the child and a routine can be restarted, if ever
discontinued, at an older age. We can dive into crisis-intervention
mode with a pre-established foundation of trust. My ethics are integral
to treatment because I cannot depend upon a child to set boundaries
without having first demonstrated limit setting and reciprocal respect
myself.
It is also a goal to teach the child that engaging the parent/caregiver
in the loop of therapy is a necessity that can still be respectful
to the child’s need for privacy. The caregiver can provide
a reality check for the therapist, as self-reporting by clients
with FASD may not be accurate enough to lead to optimal treatment.
My goals as a therapist
I have found the following basic issues should be addressed in
therapy. Some will be appropriate for the child, others for the
adolescent or adult client:
- Maximize the safety of the child/adult by reducing harm and
increasing resilience.
- Provide a safe, uncensored environment as a repository for
emotional pain. The therapist must be cognizant of the balance
between providing an outlet for catharsis while not getting trapped
into a non-productive, pervasive pattern of complaint.
- Become aware of the historical trauma and life experiences
that have affected the individual in order to seek some level
of resolution and the ability to intervene in unconscious choices
that are destructive, and may lead to continued victimization.
- Develop coping strategies for the individual, and/or engage
trusted adults to support the individual in resolving or reducing
current problems.
- Assess the individual for indicators of medical/psychiatric
disorders that require further consultation with other professionals
who prescribe treatment for depression, anxiety, and other psychiatric
and medical disorders.
- Assess the presence of alcohol and substance abuse issues,
and refer to professionals who provide treatment.
- Provide consultation to legal advocates for those clients that
have become involved in the legal system; testify as expert witness
in court proceedings.
- Prepare clients for understanding the implications of sexual
activity and teach them approaches to prevention of pregnancy
and disease.
- Help clients understand their own needs and help them seek
resources for housing, nutrition, counseling and financial support.
- Help clients understand the needs of their children and assist
them in determining what supports would be most effective in maintaining
health care, safety and education.
- With the consent of the client, provide supportive counseling
to his primary support person, parent, relative, partner or caregiver.
- Many clients have experienced frequent losses and deserve to
be supported in their grief. Often as they become older, they
may reconnect with birth family – this can be a trying time
that requires skilled support and planning, as it is not always
a celebratory experience. They may also require support in loss
of elder family members.
- Support those experiencing life threatening illnesses or life
threatening victimization.
Persons with FASD are often misjudged as having limited insight,
or they are considered hopeless because it is assumed that all their
behavior and emotional issues are related to brain function. It
is important to remember that they are people first and their life
experiences have had a profound effect on their capacity to learn,
cope and enjoy life. We need to be present with those individuals
who may have spent so much of their life feeling that those who
should be significant in their life are absent or ineffective.
Therapists working with individuals with FASD should develop a
wide base of knowledge, abilities and skills to become effective.
Here are some areas of expertise needed in this work:
- Communication skills that are specific to relating to individuals
with FASD
- Productive and open recording processes
- Ethical processes for dealing with issues of confidentiality
and sharing with caregivers
- Knowledge of issues related to brain function, especially the
ability to differentiate between what is brain function, what
is temperament and what is learned behavior
- Approaches to understanding and dealing with issues of grief
and loss
- Understanding of co-occurring disorders
- Understanding of substance abuse and resources for treatment
and ways to assist these treatment programs to address the unique
needs of the individual with FASD
- Standards of care for children who’s parents have FASD
- Approaches to caring for the caregivers who are key players
- Approaches for accessing ongoing resources after the age of
consent
- Approaches for the therapist to self-care and to reduce personal
burn out.
It is also very helpful for new therapists to have the support
of seasoned veterans in this area to help them peel the complex
layers of unique qualities, experiences and needs of the person
with FASD.
Caring professionals can become frustrated with social service,
medical and other systems that do not easily meet the specific needs
of the individual with FASD. The risks can be much higher for adults
with FASD than for the general population, thus the need for individual
psychotherapy and professional support should increase as they get
older. We need to make available long-term care so we can help the
individuals as they meet the challenges of adulthood. Otherwise
the patient may receive a jumble of less-effective help over his
lifetime and miss out on fulfilling his potential.
Each professional will develop their own approach to treating individuals
with FASD. I have tried to share some of the basic issues that I
think enhance a positive therapy experience for individuals with
FASD and their families.
Brenda Knight is a psychologist in private practice
in Vancouver, British Columbia. Her practice focuses on providing
assessment and therapeutic long-term treatment to children, adolescents,
adults and their families. She is the recipient of many awards,
and is a well-known speaker on topics related to FASD, deafness,
sexual abuse, and care for the caregiver. She may be reached at
bmknight@telus.net.
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Update from Ireland
By Michele Savage
Things have been moving along very quickly since Iceberg
featured the Emerald Isle in the June
2006 issue. That month, Dr. Tom Donaldson, President of NOFAS
Ireland, and Dr. Peter Hepper, professor of psychology at Queen’s
University in Belfast, appeared via video-link on “Primetime,”
a nationwide current affairs programme on Irish television, featuring
alcohol, pregnancy and FASD.
In March this year the launch of the Report of the Coombe Women’s
Hospital Research commanded immense attention from the media,
and our Minister for Health and Children advised that she intended
to introduce legislation regarding warning labels. Keynote speakers
included the Minister, Mary Harney; Dr. Siobhan Barry, lead author
of the study, and consultant psychiatrist and director of Cluain
Mhuire Clinic at St. John of God Hospital; Professor Deirdre Murphy,
Professor of Obstetrics, Trinity College Dublin; Dr. Kieran O’Malley,
Consultant in Adolescent Psychiatry at the Young People's Centre
of South and East Belfast Trust; Dr. Eugene Dempsey, Consultant
Neonatologist at Our Lady’s Hospital for Sick Children; and
Dr. Ann Hope, former National Advisor on Alcohol to the Minister.
Dr. Chris Fitzpatrick, Master of the Coombe Women’s Hospital,
chaired the launch conference.
Considering that in the recent past it was common practice in Ireland
to give a glass of stout to postpartum women “lying-in”
in maternity hospitals, the universally endorsed message issuing
from the launch that alcohol does not offer any health benefit for
pregnancy and women are advised to stop drinking if pregnant or
trying to conceive in a great step forward. The statement was extremely
welcome, as old habits die hard.
The research threw a much-needed spotlight on the whole issue,
and reflected the vision, expertise, hard work and co-operation
of Dr. Barry’s team of researchers in conjunction with Dr.
Fitzpatrick’s project facilitation. All deserve the highest
commendation.
The Health Promotion Unit of the Irish Department of Health and
Children provided funding for the research, which was in no small
way due to the recommendation of the Irish Strategic Task Force
on Alcohol (now strangely redundant!), and to Dr. Hope, then advisor
on alcohol to the government.
Although this study was the first large-scale piece of research
on alcohol consumption during pregnancy in Ireland, Dr. Michael
Geary attracted media coverage when announcing his research on the
same subject in respect of his clients at the Rotunda Hospital in
Dublin (where he is Master), not long after the Coombe research
was published.
More recently
On Sept. 7, the Irish Chief Medical Officer issued a statement
in honour of International FASD Awareness Day stating that the government’s
advice is not to drink at all in pregnancy, due to the risk of FASD
and neurological damage to the baby.
At last, FASD has come into public view… one radio presenter
went so far as to say, “Sure, doesn’t everyone know
about Fetal Alcohol Syndrome?” What a turn for the books!
We at FASD Ireland wish this were so.
Alcohol and pregnancy again hit the news on October 15 when we
were given a preview of the new label warning against drinking alcohol
in pregnancy. As it stands, the label sends a clear message to everyone,
regardless of literacy level or mother tongue. However, the message
should not be viewed as an attempt to moralise over women’s
behaviour, but as a means to provide knowledge of best practice.
Thus empowering women to minimise risk to their developing fetus.
Unfortunately, there has been no mention of warning notices at
points of sale/service to cover products that are on draught or
pre-poured or carryout bags and till receipts. Such a provision
would enhance protection of the consumer, the vintner, the off-licences
and the producer. The overall message is very tardy, because to
date there has been much ambivalence in Ireland as to the dangers
that alcohol – the most harmful of recreational drugs, including
nicotine – causes to the developing fetus.
It is interesting that the media exposure regarding the imminent
label appeared to originate from the Drinks Manufacturers of Ireland
(DMI) and not the Department of Health and Children. The DMI stated
that they had agreed both to the health warning and to the labels
specifying units of alcohol in a product. The industry’s statement
was that it would be guided by government advice on drinking in
pregnancy; if that advice is that it’s better for women not
to drink then the industry will abide.
The alcoholic beverage industry in Ireland
Since 1989, U.S. law has required that manufacturers of alcohol
products must warn consumers in the U.S. that alcohol causes birth
defects. Although complying with U.S. law in their exports to that
country, the ethos of social and corporate responsibility of the
Irish drinks industry has not resulted in this information reaching
their customers at home.
Such warnings or advisements, had they been forthcoming in Ireland,
would have served manufacturers’ corporate responsibility
to their shareholders well by protecting companies from possible
litigation between 1989 and 2007. Given that FASD occurs in 1 percent
of the population in the U.S. – where only about 22 percent
of pregnant women self-report as drinking alcohol – we can
only speculate as to how many children have been affected during
that period here in Ireland, where a much greater percentage of
pregnant women drink alcohol.
The Working Group on Alcohol (WGA) was required to consult all
relevant stakeholders in respect of alcohol and labelling. However,
FASD Ireland was not included as a stakeholder, despite having lobbied
publicly on the issue since February 2002.
Ireland on alcohol issues in general
We must give serious consideration to the status of the drinks
industry of Ireland, given that responsibility for the implementation
of the recommendations of the Second Report of the Strategic Task
Force on Alcohol (STFA), wherein lie huge implications for health
and welfare, was removed from the STFA and handed to the specially
formed WGA. This was done under the social partnership agreement
Sustaining Progress, in which the drinks industry enjoys a strong
role. Conflicts of interest would seem probable.
We can only imagine the outcry there would have been had such an
important remit been taken away from Ireland’s National Drugs
Task Force! Thus, the choice of which – not all or even most
– of the STFA recommendations should be acted upon did not
come under the remit of the Health Promotion Unit of the Department
of Health and Children, nor the Health Service Executive, nor the
STFA.
Perhaps we Irish are too ready to believe, endorse and cling to
the EU’s classification of alcohol as a food. If we are really
serious about tackling harm from inappropriate use of alcohol, we
need to have a National Alcohol, Tobacco and Illegal Drugs Board,
with no post thereon for the drinks industry.
The European Union and FASD
The European Union (EU) has responsibility in this matter also,
as a duty of care to all residents. Yet the EU has chosen to apply
the principle of subsidiary, so that action is not based on a pan-EU
measure, but is left to the discretion of each member state.
The EU’s roots are in the world of commerce originating from
the then-named European Economic Community, but alcohol is treated
differently than is tobacco. This has implications for the protection
of both EU residents and the public purse.
Fetal Alcohol Spectrum Disorders Ireland (FASD Ireland) has made
representations to the Rapporteur on Alcohol to the European Parliament,
Signor Alessandro Foglietta. We believe that Europe needs to both
classify and treat alcohol as a drug for starters, and that the
recently drawn-up alcohol strategy must be revisited in respect
of fetal alcohol exposure issues. We also believe that the alcoholic
beverage industry should be excluded from the European Alcohol and
Health Forum.
Allies
FASD Ireland co-operates with EUROCARE and Alcohol Action Ireland,
umbrella groups for European and Irish organisations concerned about
harm arising from alcohol consumption.
FASD Ireland appreciates Dr. Kieran O’Malley’s work
in establishing a support group for families/caregivers of children
and young people with FASD and a Developmental Disability Clinic,
both in Northern Ireland. Dr. Siobhan Barry and her husband Dr.
Joe Barry, professor of Public Health Medicine at Trinity College
Dublin, have championed the Fetal Alcohol Cause in Ireland, and
FASD Ireland is indebted to them for their care and concern in no
small way.
Fetal Alcohol Spectrum Disorders Ireland Today
Formerly Fetal Alcohol Support Ireland, we are now called Fetal
Alcohol Spectrum Disorders Ireland and our URL has changed accordingly
to www.fasd.ie. We made this change
because we wanted to emphasise the entire range and scope of conditions
on the fetal alcohol spectrum of disorders. We continue to give
talks/workshops on FASD, and work to raise awareness among Ireland’s
citizens.
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Sinja Update
As reported in the last Iceberg,
Sinja Gibson was chosen to represent Germany in the Special Olympics
World Summer Games 2007 in Shanghai, China from October 2-11. Competing
in the equestrian events, Sinja won two gold medals and one silver
medal! Her point total placed her as the best world rider in the
Special Olympics. Here she is seen in Shanghai with her medals.
Congratulations, Sinja!
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Ireland to Introduce Warning Lables on
Containers Containing Alcohol
by Katy
Jo Vasbinder
The work of Ireland's advocates for FASD awareness has paid off!
In a report
from the Coombe Women's Hospital Research in March 2007, Ireland
learned that 60 percent of 120,000 pregnant women surveyed over
the last 20 years consumed alcohol while pregnant, and about one
in 10 pregnant of the women consumed more than six units* a week,
making it the highest rate in all of the European Union (EU).
The Drinks Manufacturers Ireland agreed to the mandatory placement
of warning labels on all alcohol containers sold in the Republic
of Ireland. By agreeing to do this, they join several other countries
in the EU deciding to do this without being ordered to by the EU
itself, including France
in 2005, Sweden
in 2007, and Finland,
committed to starting in 2009. Advocates for warning labels
in Europe are hopeful that the EU will follow in the direction of
these countries, but so far their efforts have not lead to any concrete
results. Click
here to read more about Ireland's alcohol label.
* A unit is a pint of ordinary strength beer, lager, or cider,
or a pint of strong beer or lager.
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