1. Effective Practices for Supporting Individuals with Fetal Alcohol Spectrum Disorder (FASD)
Presented by Nancy Hall on behalf of
The Southern Network of Specialized Care

2. Presenter Information
Currently, Facilitator for The Southern Network of Specialized Care
Previously, FASD Community Development Facilitator representing 29 service delivery agencies, doctors and parents working in the Hamilton, Burlington, Niagara and H/N communities
Worked in social services for over 20 years as program manager supporting individuals with physical, developmental and mental health issues
Specializing in behavioural consultation and intervention
Member of the FASD Ontario Network of Expertise

3. FASD Ontario Network of
Towards a
Provincial Strategy
Advancing Effective Service Provider Practices in Fetal Alcohol Spectrum Disorder (FASD)
2010
Intervention and Support Working Group
The information presented here is, primarily, the results of a research paper produced by the Support and Intervention Working Group of the
FASD Ontario Network of
Expertise (FASD ONE)
See to find this document, as well as documents dedicated to Respite Needs and Education.

4. Advancing Effective Service Provider Practices in Ontario
Goals:
To determine what practices are most effective with individuals affected by FASD- resulted in a review of existing resources/literature
To determine if service providers in Ontario are using these practices- survey of the parents/caregivers of children with FASD in Ontario

5. Results
Eight primary effective practices were identified as critical in the successful support of this population;
-Emphasis on early diagnosis
-Training and education in FASD
-A paradigm shift to a positive, strength-based approach
-Structure, routine and supervision
-Effective communication approaches
-Awareness of and supports for Sensory Processing Disorders
-Collaborative services
-The need for life-long interdependent supports
30 service providers in Ontario were identified as effective and all 30 confirmed their consistent support and/or use of these eight practices

6. Acknowledgements
Stephanie Jones, co-author of the booklet “Strategies Not Solutions”. Stephanie has acted as a case consultant and has been training professionals in both FASD and successful intervention techniques since 2002
Ann Streissguth, 1997
Dan Dubovsky from SAMHSA FASD Center for Excellence, Rockville MD
Nathan Ory, M.A.
Diane Malbin, MSW from FASCETS, Portland, Oregon

8. Fetal Alcohol Spectrum Disorder (FASD)
FASD is an umbrella term referring to a range of disabilities resulting from prenatal exposure to alcohol. This includes:
FAS- Fetal Alcohol Syndrome- all three facial features, neurological damage
pFAS- Partial Fetal Alcohol Syndrome- 2 out of 3 features, neurological damage
ARND- Alcohol Related Neurodevelopmental Disorder- no facial features, neurological damage

9. FAS – only the tip of the iceberg
FAS & pFAS> Collectively represent
approx. 15% of those affected
ARND>Represents 85+% of those affected- most will go unrecognized
Current research tells us that at least 1 out of every 100 people is affected by prenatal exposure to alcohol- this is permanent brain damage

10. FASD: Impact on the Individual
“Of all the substances of abuse (including marijuana, cocaine and heroin), alcohol produces, by far, the most serious neurobehavioural effects to the fetus”
-IOM Report to Congress, 1996
FASD is the leading cause of disability and with 10% also having a developmental delay, it is also the leading cause of developmental delay.

11. FASD Behavioural Profile- Reflects Poor Executive and Adaptive Functioning
Inconsistent performance
Poor regulation of emotion- acts immature
Poor memory-erratic (esp. short-term)
Lack of abstract reasoning
Failure to predict
Do not understand cause and effect
Fails to generalize
Tendency to be oppositional or boastful with figures of authority
Poor self-monitoring
Poor sense of self
Strong verbal expression
Poor receptive language
Short attention span-erratic/impulsive
Difficulty with time concepts
Difficulty with transitions
Appears unmotivated/ lazy (cannot ‘walk the talk’) or manipulative
Sensory sensitivities very prevalent- watch the environment

12. Secondary Disabilities
Mental health problems-*research may redefine this as a primary disability with 95% affected also having MH problems
Disrupted school experiences (68%)
Confined in prison/treatment centre (55%)
Trouble with the law (68%)
Inappropriate sexual behaviour (52%)
Alcohol and drug problems (30-35%)
Problems with employment (70%) and living independently (82%)

13. Effective Intervention and Support

14. Diagnosis Diagnosis is critical for Effective Intervention
Research indicates that prognosis is best with diagnosis before the age of six
Accurate diagnosis assists caregivers to understand the disability and adjust intervention strategies- Typical behavioural supports tend to be ineffective
Appropriate support and understanding acts as a protective factor against secondary disabilities

15. Diagnosis (cont.) To reduce unrealistic expectations-look more capable
Allows for life long planning for supports
This information may result in the prevention of other affected children (education, monitoring and support for mom)
Using a pre-screening tool to identify those potentially affected or “thinking FASD first…” in the absence of diagnostic services will reduce the occurrences of damage to the child through inappropriate interventions
Early recognition allows for better outcomes for both the individual and their family

16. Oppositional Defiant Disorder
Comparing FASD, ADHD and Oppositional Defiant Disorder Dan Dubovsky, 2008
FASD
ADHD
Oppositional Defiant Disorder
Do not complete tasks
-may or may not take in information
cannot recall information when needed
cannot remember what to do
-takes in information
-can recall information when needed
-get distracted
-choose not to do what they are told
Provide one direction at a time
Limit stimuli and provide cues
Provide positive sense of control; limits and consequences

17. Beliefs Dictate Interventions
Behaviours are willful =Punish
Behaviours are symptoms =Support
*Education and Training in FASD is critical to this understanding!

18. Behaviors, Misconceptions and Accurate Interpretation
Behaviours
Misconception
Accurate Interpretation
Noncompliance
Willful misconduct, attention seeking, stubborn, everyone does this at times
Difficulty translating verbal direction into action, doesn’t understand, chronic memory problems
Repeatedly making the same mistakes
Willful misconduct, manipulative
Cannot link cause to effect, can’t see similarities, difficulty generalizing
Often late or doesn’t attend appointments at all
Lazy, slow, willful misconduct, lots of people are late
Can’t understand the abstract concept of time, needs assistance organizing, needs ongoing support and reminding 18

19. Behaviors Misconceptions and Accurate Interpretation
Behaviours
Misconceptions
Accurate Interpretation
Not sitting still/fidgeting
Seeking attention, bothering others, willful misconduct, normal for this age
Neurologically based need to move while learning/listening, sensory overload
Poor social judgment
Poor parenting, willful misconduct, neglected/abusive childhood
Unable to interpret social cues from peers/others, can’t control impulses
Overly physical
Willful misconduct, deviancy
Hyper or hypo-sensitive to touch & environment, can't understand social cues regarding boundaries 19

20. Why Education and Training?
There is a prevalent lack of knowledge of FASD and its effects in both the general public and the medical field
In addition to the problem of no diagnosis we see high rates of misdiagnosis
Diagnosis is not enough…we must then understand the affects of FASD and what supports will result in success- typical behavioural approaches are not usually successful
Education of professionals is equally important to the education of family and of the individual themselves

21. Paradigm Shifts- Changing understanding
From Seeing Person as:
-Won’t
-Bad
-Lazy
-Lies
-Doesn’t Try
-Mean
-Doesn’t Care, shuts
down
-IS a problem
-Acts Immature
To understanding Person as:
-Can’t
-Frustrated, challenged
-Tried Hard
-Confabulates/ fills in
-Exhausted/ can’t start
-Defensive, hurt, abused
-Cannot show feelings
-HAS a problem
-Is dysmature

22. Changing What we Do From: -Punishing -High Expectations -Failure
-Assuming
-Punishing
-High Expectations
-Failure
-Changing People
-Trying Harder
To:
-Observing
-Preventing Problems
-Appropriate Expectations
-Success
-Changing Environments
-Trying Differently

23. Paradigm Shift We are changing what WE do, not the person
UNABLE not unwilling to understand consequences
“We must move from viewing the individual as failing if s/he does not do well in a program to viewing the program as not providing what the individual needs in order to succeed.”
Dubovsky 2000
We are changing what
WE do, not the person
“If they could get it for themselves,
they wouldn’t need us!”
Dubovsky 2007

24. The Big Picture- Paradigm Shift
We know they aren’t doing it on purpose and they cannot understand consequences, so now what??
Get Curious: When you seek to change the individual, ask yourself what is it that you also need to change.
Notice your own reactions
Catch yourself assuming
Observe disruptions in routine
Look at the environment

25. Think Can’t not Won’t- How Do We Adapt?
FASD looks like…
What we want…
How we feel about it…
What we do… our reaction
The
Results
Re-frame and Prevent
Rigid, perseverates, difficulty stopping/
changing activities
Stop when told, no resistance
He/she is controlling oppositional and bossy
Interrupt, assert control, require transition
Resistance,
Anger,
BIG Tantrum
Adjust workload to achieve closure, give time
Sensory issues- over stimulated, over whelmed, distractable
Pay attention, Sit still, ignore distractions
He/she is not trying, undisciplinedoff task, ADD, Irritated, Anger
Punish, more work, medicate, no recess
Agitation, anger, avoidance, anxiety, tantrums
Evaluate the environment, reduce stimulation, provide breaks

26. Start with Seeing Success
Attendance is success
Not having secondary disabilities is success
Having a good day is more important than completing all assignments
Learning how to self monitor and self regulate is just as important as learning math
Giving the words is not giving the answers
If he is successful in 1 class than why push for more?

27. Positive Strength Based Approach
Assessment includes determining strengths and weaknesses
Includes;
-what they do well?
-what do they like?
-what are their best qualities?
-what do you like about them?
A good program should have a ‘no eject’ policy because of brain based behaviour

28. Using a Strength Based Approach
Effective programs understand behaviors are the result of permanent brain damage- it is not see as willful
A positive approach;
- moves from punishment to understanding and changing the environment or expectations
-moves from trying to change symptoms to changing our reactions
-has no negative carry-over from one day to the next
-the inventory of strengths includes family and service provider strengths to determine strong supports
-positive/strength based activities are never used as a treat or punishment resulting from good or bad behaviour

29. Strengths of People with FASD
trusting
don't give up easily
caring
friendly
artistic
musical
great speakers
creative
working with hands

30. “Find something that the person does well (that is safe and legal) and arrange to have the person do that regardless of behaviour”

31. A Positive Outcome Means Talking about FASD
Talk about FASD – no shame
FASD is a disability
The ability to express their challenges and strengths will help them advocate for themselves in adulthood

32. Structure Supervision Support
Supervision is an absolute MUST. All the time- type/intensity dependent on functional level.
Structure keeps the person anchored in time and reduces anxiety.
Helps them think less-anticipate/predict more
Means doing the same thing, in the same order, in the same manner (with the same cues and prompts) and with the same expectations. These are the rules.
Make a plan of things he is good at/enjoys- for activities when there is none

33. Structure Supervision Support
Support means modeling, cueing, prompting and getting everyone on board with it.
What is modeling?
-Think Aloud-give key self talk phrases
-Follow through
-Write out pro / con lists
-Make the connection again later when they are ready

34. Support (continued)
Focus on what they can do; ensure expectations are within their capacity. -If they fail to follow through on a task, shows signs of anxiety or frustration, some form of accommodation is required -Consider inconsistent performance on tasks
Step in early to prevent escalation of problems -Poor problem solving skills means they have limited capacity to adapt their responses -Brain impairment means they cannot self-correct and will repeat mistakes (perseverate)

35. Structure Supervision Support

36. If there is Going to be a Change
“I have an announcement, there is going to be a change. Sometimes that happens but I’m not going to have a big hairy fit about it.”
Show them what the expected behaviour looks like.
If time, change the calendar, write a post-it note. Organize for them.

37. Repeat after me: Prevention (Overall)
lock up your purse, cupboards and fridge. Colour code her things. Sew up/rip up pockets. Ask “Should we search your pockets?”
Be their external brain. If you know something bad is going to happen if…. Don’t let it happen.
Be ready. A birthday + long weekend + sharing your attention = disaster

38. Memory Strategies Keep your routine!!! “Tacos on Tuesdays”
“House cleaning on Saturdays”
Colour-code to a calendar or day timer
Schedule in locker
Post lists, charts, pictures- visual cues
Review, reteach, remind
“Give gentle reminders rather than nags and then watch him like a hawk” faslink

39. Communication Supports
Individuals with FASD tend to be very verbal with little content.
Receptive language is more impaired than expressive. This presents as a larger problem when we consider that successful outcomes are reliant on receptive language in many situations. Including;
-parenting techniques
-education
-justice system and
-treatment (motivational interviewing, cognitive behavioural therapy, group therapy and AA/NA groups) Dubovsky, 2008.
Consider the total communication approach. Pairing words with pictures, photos, gestures and signs.

40. Communication Supports
Match your language to that of the level of the person. Consider variations depending emotional state.
Use eye contact and exact repetition
10 words or less, simple and clear
Come to the end of the thought and wait a few seconds
Avoid giving instructions in places where you can’t control the environment (the mall)
Body/facial expression exaggerated
State directions in positive terms (what they can do vs what they cannot do)
Check for concrete understanding

41. Communication Supports (cont.)
Refrain from the use of sarcasm and ensure individual has jokes explained to reduce misunderstanding and conflict-concrete
Always refer to persons in a group not ‘they’ or ‘them’- be concrete
Link one task to another to establish sequences i.e. the bus comes after breakfast
Use sign language if possible
Be careful with abstract words (‘get ready’) or generalize (‘watch’)

42. Abstract Language Why?, Wait, Watch, Listen Get ready, Clean up
Join, Get in line
Respond, Choose
Be responsible/appropriate
Do it later, Wait
Use your words, Ask for help
What are you feeling?
“When you’re done, take a cab home.”

43. Visual Cues
Visual cues can be used to reduce the amount of verbal communication required. It can be used to communicate;
Physical Boundaries
Rules
Personal Routines
Schedules
Anger Management Plans
Etc.

44. Pictorial Cueing

45. Pictorial/Visual Cueing
When can we stop using cueing?
When can we stop using pictures?
Sample…..

46. Communicating a Transition
Routine and Structure
Pictures on hand (wall, wallet, desk)
A Gesture
Marking on floors
Visual clock
Watch alarm
Other concrete object

47. Sensory Integration Dysfunction
Individuals with SID have difficulty processing and interpreting sensory information resulting in over or under-stimulation and behaviours.
Defensiveness:
Includes impulsivity, self injury/aggression, avoid contact, picky eater, wears same or inside out clothing, dislikes face washing, hair brushing etc.
Modulation:
Includes distractibility, activity level extremes, difficulty with transitions and low tolerance levels

48. Sensory Integration Dysfunction (cont.)
Registration:
Includes acute awareness of noise/lights/sound/smells, lowered awareness of pain and temperature, tip toe walking, poor body awareness
Integration:
Includes hand preference delayed, poor eye-hand co-ordination and problems with motor planning (may have apraxia)
**OT identification is vitally important as often behaviours are seen in all 4 areas with children affected

49. Sensory Integration Dysfunction
Behaviours resulting from SID should cue us to determine the cause for behaviours rather than targeting the behaviour itself.
To reduce the effects of SID it is important to Modify the Environment. This will;
-Reduce Over Stimulation
-Increase ability to attend
-Increase prediction and ease of transition with posted schedules
-Increase ability to self-regulate with boundaries identified and prepared ‘comfy corners’

50. Possible Environmental Modifications
Pale/ soft colours
Bookshelves turned so all information is not ‘in your face’
Limit number of pictures
Reduce smells/ sounds in the environment (tennis balls on chair legs)
Minimalist environment-less knick-knacks, less furniture, less choices
**When unsure what will help…ASK!

51. Think About His/Her Home and Other Environments
Seating-exercise ball, rocking chair, bean bag chair
Lighting-go natural, watch the glare, lava lamps
Visual Stimulation-de-clutter, muted colours
Calming tools-fidget toys, lap blankets, bubble wrap, weighted backpack.
Organizing-big calendar, gum

52. Comfy Corner/Quiet Area
What is it?
A space that has objects to decrease the feeling of being overwhelmed or over-stimulated
Why is it Important?
The person affected may not be able to vocalize the feeling of getting over- stimulated and suddenly there is a behaviour. They need to learn what activities calm them and practice them to develop life long skills in self monitoring and self regulation

53. Comfy Corner Ideas Reading cabin made out of washing machine box
A closet
A tent
Tarp lean
Bookcase without shelves secured to the wall
Sunglasses, headphones and a hoodie

57. Sensory Diet What is it? Why? When?
A balance of sensory feedback activities
Includes a combination of alerting, organizing and calming activities
Why?
Affected individuals often can’t feel when they are getting wound up or lethargic or just right.
Teaches them how to recognize where their engines are at and how to keep feeling just right.
When?
Often throughout the day (consider time of day- after school, before test or other stressful activity)
Eventually, they will ask for it (keep items on hand when leaving home)

58. Sensory Diet Ideas Alerting
Crunching dry cereal, popcorn, chips, crackers, nuts, pretzels, etc.
Taking a shower
Organizing
Chewing on gum, granola bar, bread crusts, bagels, licorice, dried fruit, etc.
Pushing or pulling heavy loads

59. Sensory Diet Ideas Calming Sucking on a hard candy, frozen fruit bar
Pushing against walls with hands, shoulders, back, butt, head
Back rubbing
Taking a bath.

60. Sensory Ideas
Adults may be more subtle but still in need of sensory integration.
A firm hand on shoulder with medium pressure
Need to go to a quiet place to think
Needs many smokes to calm down
Needs sun glasses while in the car
Loves to push, pull, lift heavy loads
Likes to wear heavy work coat and hat
Let adults guide you to what they need

61. A Focus on Collaborative Services
FASD is complex and often requires a variety of different support services
“Agencies working together synergistically tend to increase the effectiveness of services provided to clients with FASD” Dubovsky, 2007
Case managers can survey all service provider supports, coordinate the services, arrange for collaborative planning and the modification of supports through education

62. Life Long Interdependent Support
Brain impairment is life long.
There is consensus among experts that individuals with FASD are unable to stay organized or focused and are easily influenced by others. There is a limited capacity to exercise good judgment, anticipate consequences and stay safe.
Therefore, they will need long term external structure, support and supervision- an external brain or brains

63. Dealing with Resistance ~ Building the Relationship Letting it be their idea “Maneuvering” for Success

64. Resistive Behaviour Has Many Roots
“Problems translating verbal directions into action” Allan Mountford “I’d rather look bad than stupid”
Overly stimulated “I can’t take it anymore”
Unresolved grief and loss issue related to time of year “My birth mother gave me up on my birthday” Bill Dubovsky
Patterned behaviour with authority (sarcasm) tit for tat constantly
Negative Blueprint “I’m always in survival mode even when you show me you care about me”

65. Overcoming Resistive Behaviour by Letting It Be Their Idea ~ Nathon Ory www.fasdconnections.ca
Remember that normal teen issues are:
a. feel in control b. feel independent from authority
Goal: Give the person the idea of what he or she would actually wish to do
1st: Get the idea in their mind
Create “accidents” that will cue the person to do the desired behaviour
Then: Agree with them by going in their direction.

66. Maneuvering the Environment for Success
Creating an optimal environment for compliance, self-confidence and success.
Do:
What you are comfortable with
What it takes to get others on board
Have one lead person
Don’t:
Let others convince you that the truth is best
Let others convince you that she has to know everything

67. Maneuvering the Environment for Success - Examples
Setting up his first apartment and/or job
Check it out first, have her drop by spur of the moment.
Make safety issues part of the lease/contract.
Get others saying the same thing (bus drivers, cleaning staff, landlords, etc.)
Let them think… “Yes, of course you will….”
Remember it’s like you are dealing with a youth with Alzheimer's

68. Time Visual timer, ticking timer or time timer
Be careful when you say 2 o’clock. It could mean 2:01 to 2:59
Use charts to link time and activities I.e. clocks, words, activity (bathroom chart)
Give adults in SIL a watch that can be programmed to go off at curfew
Gadgets that have hourly chimes or pill containers that can be set for up to 5 alarms (Circuit City)

69. Money Teach money association to objects
Point out good spending decisions
Create a learning savings in class and keep track on a white board, where appropriate
Before going in to the store, talk about what’s going to happen, make a list and stick to it!
Stay on top of important purchases with care givers. If the buying day is coming, keep reminding her of the expectation.
Always give a ticket rather than money
Never give a credit card or gas card-make up a reason why you can’t have one either
Own up to your mistakes. Think aloud.
Get a Power of Attorney

70. Life Skills Make one day a week cleaning day and don’t change it!
Have instructional pictures on machines
Make a shopping list and go at low times
Buy food mixes that have pictures
Use the microwave when ever possible
Pictures or words for all shelving and cupboards

71. Self Care/Hygiene
Create Bathroom charts with pictures of clocks and matched activity for morning routines
Practice shaving with a razor, putting on a condom
Encourage practicing for feminine hygiene
Use egg timer for teeth brushing
Teach/model how to use soap, shampoo, toothpaste- don’t assume they know how. Check regularly to see if they have forgotten

72. Rages
Poor emotional control in 3 seconds
Frequently does not understand social cues until it is too late
Unable to verbalize the issue in the moment
Prevent it. Low stimulation, lots of breaks
Be gentle and direct when it is escalating
Coach others not to engage or push back during a rage
When it is over make apologies and move on
Later review calming strategies for next time.

73. Confabulation If I think it, it must be true
I hope this is what happened
I don’t want to get into trouble so…
Perception is complicated by long-term memory problems
He must persist in the story no matter what
Do not confront a minor lie (exaggeration)
Be gentle but firm. “I am mandated to call___ whenever there is confusion about and event. We need to get this issue cleared up”.
Teach the moral lesson much later- no punishment

74. Stealing If no one is around it, it is not owned by anyone
Finders Keepers
I see other people doing this
I NEED this ___ to survive
Prevent it. Label all her things
Ask “Do you need to show me your pockets?”
Have her dump out her backpack
Gently point out what is not hers
Give back immediately
Give the lesson later- not about punishment

75. Accommodations FASD is an invisible physical disability
Brain structure and function is changed
Behaviours are symptoms
Trying harder to change behaviours makes things worse
Recognizing the disability and providing accommodations prevents problems
This is what we do with people with visible disabilities
It works

76. The Southern Network of Specialized Care
Purpose: To promote and enhance services for individuals with developmental disabilities who need specialized care for co-existing mental health issues and/or significant behaviours (Dual Diagnosis)
Develop & Promote Relationships Across All Sectors
Develop Specialized Clinical Skills & Services
Education
Research
Recruitment & Retention
Data – Gap Identification
Unified Community Voice
For more information contact Nancy Hall at or X312

77. Resources
Edmonton and Area Fetal Alcohol Network. (2004). FASD strategies not solutions. Published by The Government of Alberta Children’s Services.
Graefe, Sara. (2006). Living with FASD: A guide for parents. Vancouver: Groundwork Press.
Kranowitz, Carol. (1998). The out-of-sync child: Recognizing and coping with sensory integration disorder. New York: Skylight Press.
Malbin, Diane. (2002). Trying differently rather than harder. FASCETS, Portland, Oregon.

78. Resources (cont.)
Streissguth, Ann. (1997). Fetal alcohol syndrome: A guide for parents and families. Baltimore: Brookes Publishing.
Streissguth, A., & Kanter, J. (1997). The challenge of fetal alcohol syndrome: Overcoming secondary disabilities. Seattle, WA: University of Washington Press.
Trudeau, Debbie (Ed.). Fetal Alcohol Syndrome Society Yukon. (2002). Trying differently. A guide for daily living and working with FAS and other brain differences. 2nd Edition.

79. Resources recommended by Ontario Service Providers
"Once Upon a Time: Therapeutic Stories that Teach and Heal" and "Once Upon a Time: Therapeutic Stories to Heal Abused Children (revised edition) by Nancy Davis PhD. Saskatchewan FASD Tip Sheets www/skfasnetwork.ca
Best FASD Sites
Fetal Alcohol Spectrum Disorder, by Toronto FASD Coordinating Network 2008
Strategies Parents find Helpful in Raising Children Living with FASD, prepared by Czaee Rajwani. Toronto: St. Michael’s Fetal Alcohol Spectrum Disorder Clinic, 2007.

80. Resources recommended by Ontario Service Providers (cont)
FASlink Discussion Forum is an Internet mail list for individuals, families and professionals who work with FASD. This provides support and information 24/7. To join FASlink go to
Olderfas is a support group and discussion list for parents only. They welcome family members/parents/caregivers supporting for older teens with FASD who are transitioning to adulthood. Diagnosis is not required. To join go to
Picture This: Life as a Parent of Children with FASD (podcast):