“Inclusion”: A lesson learned from a student with a disability

A recent blog post by Edmonton FASD Network described a story of a school teacher who was stunned by the strengths shown by a child with disabilities who was a 17-year-old deaf, blind and autistic boy. He

(https://edmontonfetalalcoholnetwork.org/2018/11/13/vancouver-teacher-is-schooling-educators-on-the-value-of-inclusive-classrooms/)

“It was a really big lesson. The learning I had that day was not about me learning about his disability, but it was my inability to see that he was competent,” Ms. Moore

Now she is telling her story to everyone… You can read the full article here

Students with learning disabilities, intellectual disabilities, ADHD, Behavioural problems and physical/sensory disabilities which include children with FASD require ‘special needs education methods’ to include them with the rest of the class. Teachers of children with special needs have great responsibility in recognizing children with different disabilities and guide them for proper education and inclusion within the class using ‘less restrictive environement’ and individual education plans.

According to Popova 2016 the cost of special educational needs of children with FASD in Canada exceeds $53 million, which could be an underestimation considering FASD as an invisible disability in most cases and go unrecognized. Therefore, the demand for efficient special needs education programs, well-planned and executed individualized education plans for each child with FASD or similar disabilities and providing proper training for all the teachers interacting with children with disabilities.

Kudos to all the great ‘special education teachers’ and supporting professionals for dedicating their lives to make the lives of children with disabilities better. Their voice may, in fact, raise awareness of disability and special needs among all the teachers and encourage them to practice ‘inclusion’ in every classroom.

Note: The expressed opinions are of VR Medical & Science Writers.

 

Confabulations or ‘Telling False Stories’ Associated with FASD and Resources for Parents

What is confabulation?

Confabulation is a memory disturbance in which a person confuses imagined scenarios with actual memories with no intent to deceive. Most cases of confabulation are the result of dementia, brain damage, aneurism or Wernicke-Korsakoff syndrome (thiamine deficiency due to alcoholism).” says Traci Pedersen in her Psych Central article (Pedersen, 2018). Confabulation occurs due to some errors in their memory that may lead to creation of false realities, a distorted memory of events, or differently remembering existing memories which are done unintentionally (Brown et al., 2016). Individuals with brain damage to the frontal lobes and associated cognitive impairments may tend to confabulate.

What is the impact of confabulation on children or adolescents with FASD?

Due to the nature of the harmful effects of alcohol on the brain, children with Fetal Alcohol Spectrum Disorders (FASD) tend to say things that are not happening in reality. Simply put, they may say things that are not true, probably in a very convincing manner, as they may believe what they are saying is true (J Brown et al., 2017; McGinn, May 2013). In other words, children with FASD may make things up that may not be true, but without the intention of deceiving anyone (J Brown et al., 2017). One may consider as lying but in fact, it is not considered as intentional lying as it is caused by neurological defects caused by damages to the frontal lobes of the brain (McGinn, May 2013). Unfortunately, the same concept applies to some cases where individuals with FASD would confess to crimes that they have not committed (Brown et al., 2016; McGinn, May 2013).

What is the impact of FASD-associated confabulation on parents of children with FASD?

As a result of the array of deficits associated with FASD, individuals impacted by this disorder may be at an increased risk to confabulate compared to their non-FASD counterparts. Confabulation of new memories from real and fictional experiences is a common issue in FASD.” says Brown and colleagues in their guide for mental health professionals (J Brown et al., 2017). Moreover, children with FASD may tell stories or things someone may consider as lies by filling gaps of their memory, due to their impulse control problems. The Healthy Child Manitoba program handbook for parents and caregivers describe this as “Some children and teens with FASD may struggle with lying if they have trouble controlling their impulses. They may tell a lie when they think it is what the person wants to hear, when they do not want to disappoint someone or if they are trying to get someone’s attention. With impulsive behaviour, it might seem like a good idea to tell a lie at that moment, but they have not thought ahead to the consequences of telling the lie.” (Healthy Child Manitoba, 2016).

For these reasons, if a child with FASD confabulates that their parents or caregivers have tried to harm them hurt them, parents may get in trouble for alleged child abuse or neglect. In a guidebook for  school psychologists and counselors regarding FASD, it was mentioned that a child with FASD may lie or confabulate in cases where someone told them to do so (child may do it to please them) or he/she misinterprets intentions of others (for example, interpret bumping into each other as an attack or holding the arm as trying to hurt) or the child may be simply responding to a memory of history of an actual abuse (Colorado Department of Education). Therefore, the criminal justice system should be careful in responding to allegations of child abuse for parents and caregivers of children with FASD. They should try to identify whether the child is telling the truth or is confabulating. A systematic fact-checking for the accuracy of the information provided by the child is a good way to start such allegations (Jerrod Brown et al., 2017). Moreover, children with FASD can be provoked or induced to make allegations of abuse and thus law enforcement professionals and childcare/social workers should not act irresponsibly to take the child away from parents or accuse the parents without checking the facts (Bernet, 1997). Whether the allegations are completely true or false, the impact of such child abuse or neglect allegations against parents or caregivers of children with FASD can be highly stressful for the family and may have other consequences as social stigma, discrimination by the society, relatives or friends from whom they need help to take care of a child with FASD, losing the child to the child care services, get arrested and sent to jail. If parents or caregivers have no way of proving and providing evidence that their child with FASD was confabulating or fabricating a story, they may face severe consequences.

 

Resources for parents and the criminal justice system

1. Raising awareness within the criminal justice system

For reasons discussed above, the law enforcement professionals and the criminal justice system should be aware of the behaviors of individuals with FASD. In an article which provided suggestions for the criminal justice professionals, it was mentioned that Criminal justice professionals should be aware that when interviewing someone with FASD, they may unknowingly provide inaccurate information and contradictory statements….Recognition and knowledge of confabulation during the investigative process may prevent the potential for wrongful arrest, conviction, and subsequent incarceration of an innocent individual. (Brown et al., 2016). Both the individuals with FASD and their parents/caregivers may become victims of the justice system due to confabulations. Therefore, raising awareness of confabulations associated with FASD within the criminal justice system and establishing protocols to avoid wrongful consequences of such events will be highly beneficial and be appreciated by the families of individuals with FASD.

Following are some important links for criminal justice professionals when dealing with children who may have FASD and may confabulate on child abuse by their parents. This information is also important for parents and caregivers who may have been accused of child abuse by children with FASD.

 

Protocols for recognizing signs of confabulations and communicating with them

Recognizing the signs of confabulation is very important. There are two types of confabulations (Pedersen, 2018), 1) Provoked: patient invents a story or make a statement in response to a pressured question; 2) Spontaneous: patient makes up stories without an apparent reason. There are studies which have reported fairly successful evaluation methods of both types of confabulations Pacific Assessment of Confabulation, the Sacramento Assessment of Confabulation, Nijmegen-Venray Confabulation List-20, Provoked Confabulation Test and Dalla Barba Confabulation Battery (Brown, 2017; Rensen et al., 2015).

For example, the Nijmegen-Venray Confabulation List-20 (NVCL-20) is an observation scale for quantifying confabulation behavior that can be used at a clinical setting and detects both provoked and spontaneous confabulations (Rensen et al., 2015). This test was in fact designed to measure confabulation of patients with “Alcohol-Related Cognitive Disorders” (Rensen et al., 2015) and therefore, might possibly be used for FASD as well, which needs to be assessed empirically in clinical settings.

A webinar by Dr. Jerrod Brown, proposes 10 tips for law enforcement professionals regarding how to communicate with an individual (child or adult) who may have FASD, so that confabulations could be recognized, and specifically legal consequences of confabulation could potentially be avoided.

The 10 tips are listed below (Brown, 2017).

Ten Tips For Communicating With An Individual Who May Have FASD

  1. Use simple, concrete and direct language

  2. Avoid leading questions

  3. Explain things slowly to allow more time to process the information

  4. Ask the individual to explain what you said in their own words to ensure understanding of the direction or question

  5. Inquire about contacting a mentor, advocate, or case worker who can offer support

  6. Conduct the conversation in a quiet setting free of distractions

  7. Give the individual space and avoid physical confrontation

  8. Maintain a calm and collected demeanor at all times

  9. Gather corroborating evidence or statements

  10. Provide frequent breaks to protect against distraction and mental fatigue

As the children with FASD have language deficits, it is very important to communicate them in a sensitive manner to understand whether they tell the truth or not.

Collectively, the society, criminal justice system, healthcare professionals, school teachers, social workers and parents/caregivers should be aware of the possibility of confabulation by children with FASD and take necessary precautions to avoid wrongful accusations/allegations and victimization of both parents/caregivers and individuals with FASD themselves.

Note that the views and opinions expressed here are those of the VR Medical & Science Writers.

References

Bernet, W. (1997). Case study: Allegations of abuse created in a single interview. J Am Acad Child Adolesc Psychiatry, 36(7), 966-970. doi:10.1097/00004583-199707000-00019

Brown, J. (2017). Confabulation: A review for forensic professionals.   Retrieved from https://s3.amazonaws.com/CONCEPT/Wednesday+Webinar+2017/Confabulation%3A+A+Review+for+Forensic+Professionals/Final_Confabulation+2017+Handouts.pdf

Brown, J., Huntley, D., Asp, E. W., Wiley, C. R., & Cich, J. (2017). Confabulation: Implications for criminal justice, forensic mental health, and legal professionals. J ARCHIVOS DE MEDICINA, 8(5), 217.  Retrieved from https://pdfs.semanticscholar.org/0380/2a1b4da26bd2304144c498b33882d2b044ca.pdf

Brown, J., Huntley, D., Morgan, S., Dodson, K., & Cich, J. (2017). Confabulation: A guide for mental health professionals. Int J Neurol Neurother, 4, 070.  Retrieved from https://www.pathwayscounselingcenter.org/Confabulation%20-%20A%20Guide%20for%20Mental%20Health%20Professionals.pdf

Brown, J., Oberoi, P., Wartnik, A., Winkauf, E., & Herrick, S. (2016). Fetal alcohol spectrum disorders (fasd) and confabulation: A review for criminal justice professionals  S.A.F. Océan Indien.  Retrieved from https://www.safoceanindien.org/fasd-and-confabulation/

Colorado Department of Education. Take another look: A guide on fetal alcohol spectrum disorders for school psychologists and counselors.  Retrieved from https://www.cde.state.co.us/cdesped/fasd_anotherlook_schoolpsychologistscounselors

Healthy Child Manitoba. (2016). Every day is an adventure: What parents and caregivers need to know about fetal alcohol spectrum disorder (fasd).  Retrieved from https://www.gov.mb.ca/healthychild/fasd/fasd_caregivers.pdf

McGinn, V. (May 2013). Fetal alcohol spectrum disorder and confabulation.  Retrieved from http://www.fan.org.nz/__data/assets/pdf_file/0018/36135/FASD_Confabulation_McGinn_2013.pdf

Pedersen, T. (2018). Confabulation  Psych Central.  Retrieved from https://psychcentral.com/encyclopedia/confabulation/

Rensen, Y. C., Oosterman, J. M., van Damme, J. E., Griekspoor, S. I., Wester, A. J., Kopelman, M. D., & Kessels, R. P. (2015). Assessment of confabulation in patients with alcohol-related cognitive disorders: The nijmegen-venray confabulation list (nvcl-20). Clin Neuropsychol, 29(6), 804-823. doi:10.1080/13854046.2015.1084377

 

Towards a Standard Canadian Definition of FASD

For a common and accurate definition of Fetal Alcohol Spectrum Disorder…

canfasd

At CanFASD, we have been working to create a common definition of FASD for use in a Canadian context.

We believe that if all governments, service agencies, and researchers use a common definition of FASD, it will:

  • Reduce stigma, given that many existing definitions are quite harsh and use incorrect or outdated information
  • Increase understanding of the disability
  • Increase consistency in our messaging
  • Reduce confusion

When talking about FASD, we recommend that individuals avoid:

  • Referring to FASD as something that is “caused by” or is “the result of” a mother consuming alcohol while pregnant, as this can inadvertently place blame
  • Fatalistic terminology and phrasing (e.g., “with no cure”, “devastation”, “preventable”, and “average life expectancy”)
  • Outdated terms, like “mental deficiency” and “mental retardation”
  • In line with our language guide, avoid the terms primary and secondary disabilities

Our draft definition has received feedback from our CanFASD staff, our team of Research…

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Do you think testing the newborns for prenatal alcohol exposure is ethical? A good article…

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What is this research about?

Fetal Alcohol Spectrum Disorder (FASD) is the leading cause of a developmental disability (DD) that could be prevented. The quality of life of people with FASD is improved when they begin interventions at an early age. It is not yet possible to screen a fetus for FASD before birth. Tests are under development that could be used to identify newborns that have been exposed to alcohol in the womb. There are ethical concerns that must be considered before a prenatal alcohol exposure (PAE) test is done. This research talks about the common ethical concerns related to screening for FASD.

What did the researchers do?

The researchers conducted a literature review using 3 databases. A variety of key words connected to FASD were used for the literature search. Ethical concerns with PAE tests were found after a review of relevant literature.

Clickhere to download full…

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