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Did you ever think adolescents with FASD or PAE could practice social and cognitive skills in a virtual environment?

Rianne Spaans is a third-year doctoral student in the School and Clinical Child Psychology program at the University of Alberta thought so! Rianne, under the supervision of Dr. Jacqueline Pei and in collaboration with the “programming geniuses” at Technology in Education Specialization in the faculty of education at the University of Alberta are working to develop and test the effectiveness of a virtual environment intervention that targets social and cognitive skills for adolescents aged 13-18  with fetal alcohol spectrum disorder (FASD) or prenatal alcohol exposure (PAE).

This unique and engaging intervention takes place in a virtual environment, or what Rianne calls a “fancy video game.” The style of the game is mission impossible, where players interact online to solve the crime. Different social and cognitive skills are targeted by the types of games played or tasks completed. Such tasks progress in difficulty, starting off easy and becoming more difficult as the game continues.

Rianne explained one of the games “Car Thief,” that takes place in a chop shop where a team of 5 players works together to catch the bad guy that steals cars. The evidence they find in this particular game takes players through different scenarios such as avoiding guard dogs, disarming cameras and examining documents to find relevant names as clues to solve the case.

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Image from Virtual Environment “Car Thief” game, players distracting guard dogs.

Teams of players that work well together catch the bad guy. However, this is not without working on skills such as emotional regulation or attention span. Capture10.pngSome games, for example, are designed to induce frustration or distract players from the task at hand by decoys depending on how the team of players works together.
There are also features like a  “chill out space” where if players do become frustrated they can take a break.

To top it all off, this virtual environment was entirely developed from scratch, from the storyline and characters to the game programming!

Rianne pointed out that there is a need for interventions that engage adolescents stating “It is understandable why they [adolescents] are not wanting to stay in some intervention programs… most programs are boring.” They are just simply not targeting adolescents interests. Rianne is hoping that this project will expand the kinds of interventions out there for adolescents to include virtual environments. As well as to “jump start the development of interventions that are fun and engaging.”

The study discussed in this blog is titled “Social Skills Intervention for Adolescents: the use of a virtual environment” and is currently  adolescents aged 13 up to 18 years old with a diagnosis of FASD or PAE (suspected FASD) recruiting out of the Univeristy of Alberta located in Edmonton.

If you would like more information or to participate in this study, please contact Rianne Spaans at spaans@ualberta.ca

 

See below for more images from the virtual environment intervention!

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Edmonton Alberta is now home to a unique housing facility specifically for individuals diagnosed with fetal alcohol spectrum disorder (FASD). The Hope Terrace Permanent Supportive Housing (PSH) program includes access to a case management and 24/hour support team. This facility is owned by Homeward Trust with the Bissell Centre providing internal and external support services for residents.

Internal supports are provided by a case management team that is able to tailor programming and support to the resident. The needs addressed may range from mental health and addiction supports to daily living and financial skills, however, are unique to the individual needs of the resident.

The case management team’s support workers are able to accompany residents to various appointments and commitment and work to establish a sense of community through group outings and in-house cultural supports for indigenous folks.

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Image source: http://homewardtrust.ca/programs/completed-details.php?id=23

Bissel Centre website for contact & extended information.

Global News Edmonton also covered this story. Click on the link for the news article and footage.

 

Participants wanted for Canadian FASD Media Coverage Study! Please see the below for study information:

Participants wanted for a group interview study about FASD!
We want to talk to you about your experiences with FASD. In particular, we want to hear your thoughts and feelings about examples of Canadian FASD media coverage, to think about how to more effectively communicate information about FASD. Your perspective will be invaluable in helping us to better understand FASD, and the way it is discussed in the public sphere.
Who can participate?
We want to include key stakeholders, like: 1) adults with FASD; 2) parents of and caregivers for people with FASD; 3) healthcare professionals with experience diagnosing or caring for patients with FASD; and 4) FASD communicators (e.g., journalists, public health officials).
What does the study look like?
This study will involve participation in a 90-minute group interview in English. Each interview will include only one stakeholder group at a time (e.g., only adults with FASD, only parents). You will be compensated for your time.
How can I get involved?
If you feel you match the above criteria, please send an email to: john.aspler@ircm.qc.ca.
We will send you a brief online questionnaire to fill out, as well as the informed consent
document for you to look over when deciding whether or not to participate. Sending us an email does not mean you have agreed to participate, and you can choose to stop at any time.
For more information or if you have any questions, please contact John Aspler at:
john.aspler@ircm.qc.ca, or at (514) 987-5500 (extension 3356).

Study Title: Fetal alcohol spectrum disorder in the Canadian print news media: A study of media discourse and key stakeholder perspectives
This study is conducted by an interdisciplinary team of bioethicists and scientists:
John Aspler, BSc, Doctoral candidate, Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM).
Eric Racine, PhD, Director of the Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM), 110 avenue des Pins Ouest, Montréal QC H2W 1R7, Tel.: 514 987-5723, email: eric.racine@ircm.qc.ca.
James Reynolds, PhD, Centre for Neuroscience Studies, Queens University.

If you would like to read our previous blog post on FASD and Media Click here!

April 16th, 2016 The Current on CBC radio presented an episode on Bill C-235 proposed by Liberal MP Larry Bagnell introduced in January of this year. Bill C-235 targets those affected by fetal alcohol spectrum disorder (FASD) that are seemingly caught in the “revolving door” of the criminal justice system in Canada. Offenders involved in the Canadian criminal justice system are often a forgotten demographic of individuals with limited access to effective FASD specific interventions and community transitional programs. 

For more information on Bill C-235 or to listen to the full CBC radio program on this topic please click the above links.

In order to better support those affected by FASD in the Canadian criminal justice system Bill C-235 is proposing the following changes in legislation:

  • Access to assessments for individuals suspected of having FASD

  • Allowing assessment to inform sentencing of these offenders

  • Reintegration plan for community transitions

The CBC radio episode features an interview with Russ Hilsher who has FASD and is a spokesperson for Initiatives for Just communities and discusses his personal experience in the Canadian criminal justice system and the need for programs and services for individuals with FASD involved in this system. As well as discussions on the proposed Bill C-235  with Jonathan Rudin, program director of Aboriginal Legal services and chair of FASD Justice Committee and Dan Brodsky, criminal defense lawyer with the Association in the Defense of the Wrongly Convicted

Image source: http://www.crisisprevention.com/Blog/September-2015/FASD

 

CPI, an international organization focusing on safe behaviour management, recently posted an article written by behavioural therapist Chris Arnold. Arnold Describes key issues faced by individuals with FASD and  how to best support these individuals.

It is a great read -worth checking out if you are looking to learn a little bit more about what life is like for a person with FASD and how we can help them with daily struggles.

Arnold covers some key issues faced by individuals with FASD such as anxiety, the invisibility of the disability, the need for ongoing re-learning, and trouble with: structure, sequences, verbal instructions, understanding cause and effect, and understanding abstracts and generalizations. He discusses how we may misunderstand many of these issues and the implications our misunderstanding may have, as well as specific strategies to support people with FASD.

Click here to read the article

knowfasd

We recently featured our newest project, KnowFASD, in the latest edition of our iNAT newsletter. For those of you who have not yet subscribed to the iNAT newsletter, here is some information about KnowFASD:

Our goal with KnowFASD is to provide a comprehensive site where viewers can learn about the neurobehavioural deficits associated with FASD throughout the lifespan and link to intervention options.

The main homepage of the website is an interactive interface where viewers can scroll through the lifespan of individuals with FASD, with neurobehavioural issues at each developmental stage presented as they may appear in day-to-day life. By clicking on a neurobehavioural issue, viewers are directed to a “wiki” (which works in a similar fashion to Wikipedia) housing information from current research on the neurobehavioural issue at hand. Each wiki page discusses a specific neurobehavioural issue: how it presents, potential causes, and potential consequences. At the bottom of each page, a link is provided to topic-specific intervention options.

Please feel free to visit the site, pass it along, and give us your feedback or suggestions. Check back often as we continue to categorize and upload information.

Visit KnowFASD

In my search for intervention information for this blog, I come across many strategies and research studies aimed at children and youth with FASD, which is wonderful. Early intervention and lots of it is a great thing. However, the reality of the situation is that fetal alcohol spectrum disorders do not disappear with time. If you have an FASD as a child, you continue to have it as an adult.

Research by Streissguth et. al.1 shows that adolescents and adults with fetal alcohol spectrum disorders function academically at an early grade school level. Their average adaptive functioning level (i.e. daily living skills, socialization skills, communication skills) is at the level of a typically developing 7 year old. Sixty two percent of adolescents and adults with FASD showed significant maladaptive behaviours, such as poor attention and concentration, teasing/bullying, crying or laughing too easily, dependency, stubbornness, social withdrawal, impulsivity, anxiety, and sullenness).

In another study on young adults with FASD2, the secondary disabilities associated with FASD (such as disrupted school experience, difficulties in the workplace, trouble with the law,and difficulty living independently) are very apparent in adulthood. Approximately half of the participants had needed special education, with only 38% having passed primary school and only 13% having passed high school. Despite a majority of participants having received some sort of job training/preparation, only 13%  of participants had ever been employed in a regular job. Only 30% of participants in this study were either living independently or with a partner/family of their own. The remaining 60% were institutionalized or in a dependent-living situation.

Given that we often find that adults with FASD function at the level of school-aged children, ideally they should be provided with the same amount of support we would give to a child. However, this is not always the case. According to the Canadian Child Welfare Research Portal, children with disabilities in Canada  receive child welfare protection until the age of 19.  In addition to this, many individuals  with prenatal alcohol exposure do not receive an FASD diagnosis (but still experience neurobehavioural issues and difficulties with daily living), meaning that without a diagnosis they might be cut off from child protective services at an earlier age (children and youth without disabilities in the child welfare system are eligible for child protective services until age 16-19, depending on the province).

Becoming an adult, leaving the  school system, and no longer receiving child welfare services can be a huge loss of consistency and support.

All of this begs the question: What are we doing to support adults with FASD?

In a recent article from the Sudbury Star entitled “We’re just different”, Matthew Pakozdy, a young adult with FASD, speaks about the difficulties and successes of living with FASD.

The take home message from this article? supports are needed for children and adults alike with FASD, and the right supports can make a difference. Pakozdy credits a supportive mother, reliable caregivers/advocates, support staff and friends for the positive changes he has made in his life.

A few other things mentioned in the article as essential supports for individuals with FASD are a permanent cellphone with easily accessible emergency phone numbers, regular income, housing alternatives, and help to foster emotional control and healthy relationships.

With increased awareness and research about FASD, organizations are jumping on board to support adults with FASD:  

Check out Community Living British Columbia‘s “Supporting Success for Adults with FASD”, an online resource for those who work with adults with FASD

MOFASThe Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) holds a support group for adults affected by an FASD every Monday until April 2, 2013 in Saint Paul, MN.

For other posts about adult interventions, see our archived articles under Adult Interventions.

For our readers: Know of an organization that helps adults with FASD? Share it here or send us an email so we can spread the word!

 

References:

1.         Streissguth, A.P., et al., Fetal Alcohol Syndrome in adolescents and adults. The Journal of the American Medical Association, 1991. 265: p. 1961-1967.

2.         Spohr, H.-L., J. Willms, and H. Steinhausen, Fetal Alcohol Spectrum Disorders in young adulthood. The Journal of Pediatrics, 2007. 150(2): p. 175-179.e1.

 

Finding Hope,” A site from the province of BC about the struggles, successes, programs and lives of those affected by FASD, is well worth a look!

The full documentary on the Finding Hope website is a wonderfully touching and informative resource highlighting the lives of several individuals with FASD and their families interspersed with commentary from professionals in the field.

The documentary begins with a look at the lives of several families and their children who are affected by FASD. Interviews with the families and the children themselves provide great insight into what it’s like to live with FASD and raise a child with FASD. The videos contain discussion with professionals in the field regarding diagnosis, physical and neurological effects, cognitive and behavioural issues, prevention, intervention, and the importance of recognizing that the effects of FASD are due to a brain injury rather than wilful choices.

Several interventions are highlighted in the documentary:

Whitecrow Village:

The  camp (L.I.F.E sessions) experience at Whitecrow Village is featured. The camp reinforces the concepts of structure, predictability/consistency, and respect through adapted activities for children with team leaders who have FASD themselves. These activities run concurrently with education sessions for adults. Children, families, and Whitecrow Village staff work and learn together to create a sense of community.

Homeschooling:

One family in the documentary has created a homeschool of their own, hiring teachers to work with the children. They stress the importance of short segments of learning with active breaks and a calm predictable environment.

FASTrack Program:

The FASTrack program at Kennedy Trail Elementary School in Surrey BC is a program with strategies specific to FASD. The program advocates for the importance of communication between the home and school and the importance of translating to other schools the knowledge of what works in this program.

YWCA/Prevention Programs:

The YWCA provides programs to help women make good choices, which is essential in the prevention of FASD and the good parenting practices needed for mothers of children that are already affected

Other highlighted interventions are the ever-important dedicated teachers’ assistants, and provincial programs incorporating key workers  and respite workers who help parents with coping and communication strategies.

On the finding hope website, there is also a compilation of videos on a number of FASD related topics:

  • About FASD
  • Prevention
  • Assessment and Diagnosis
  • Resources for Parents
  • Resources for Educators

Each section contains videos, an overview, links to sites relevant to the topic, and some great downloads with resources and tips.

To our readers:

The documentary concludes with messages of hope from the families and professionals in the video.
Where do you find hope?
Are there any specific interventions or people that have given you hope?

With so much information to take in, it’s sometimes easy to get caught up in research papers, news articles, and statistics and become detached from the real reason that all of this information exists in the first place: The individual people who are affected by FASD.

So for this week’s blog post, I thought I’d take things to a more personal level and post a letter that I found through the National Organization on Fetal Alcohol Syndrome, written by a young lady with FASD.

100 Mile House Free Press published a letter written by Shirlana Vance that she had written and read aloud for FASD day on September 9 in 100 Mile House, BC. She writes with a confident and inspirational tone about her future goals along with the struggles she has dealt with and the help she has had along the way to get to the place where she is today. 

Shirlana speaks about bringing out the strengths and abilities in someone with FASD, stating that “Confidence is key most definitely, along with structure and stability”.

 

Click here to read Shirlana’s letter.

 

 

And, in keeping with our intervention theme, the article notes that Shirlana recently completed a youth employment services program at The Cariboo Family Enrichment Centre (CFEC) in 100 Mile House. CFEC is a non-profit society which runs numerous programs and services for families and individuals, based on the needs of the community, including a program specific to FASD which provides support, information, resources, and assistance with accessing diagnosis and assessment.

To Our Readers

We encourage you to share your stories here, too.

Do you know someone with FASD  who has had a particularly positive influence in their life, like Shirlana has with her parents and CFEC?

Please feel free to share with a comment!

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