Teaching Children with Autism about Confidentiality using Social Stories

Hello Everyone,

No post in July.  I have been working on an article for Building Blocks Magazine, a quarterly periodical focused on individuals with special needs and developmental diagnoses, using my last post on suggestions for parents to help their children manage news and media anxiety.  It is scheduled to be published in their upcoming September, 2017 issue and I will have copies in both their downloadable and published form for you to use. 

In the meantime, I have been doing some research in response to numerous parent questions about explaining confidentiality to their child with developmental diagnoses.  Somewhat surprisingly, there is not much information available, let alone resources, to assist parents and, critically, service providers such as doctors, lawyers, and mental health professionals, in explaining the hugely important topic of client information privacy.  It is all the more surprising considering all the ethical and legal implications of client-professional privilege and regulations around the protection and sharing of private information.

As we all know, the term “confidentiality” is, as we believe, relatively straightforward and means that “the information revealed by a patient or client to a professional is private and has limits on how it can be shared with a third party, usually requiring knowledge and consent of the individual before being shared”*.  Of course, concrete definitions have to be subject to rules and regulations that facilitate professionals in these relationships to do their jobs, namely communicating important information to other providers and family members that may assist in the care or advocacy of the individual.  Often times, such information may be considered private by the individual in the care of these providers and therefore fall under the scope of “confidential information”.  What the individual may reveal to his/her therapist, he/she may not reveal to their primary care doctor.  However, this information may be critical to the doctor’s ability to provide competent, comprehensive care to the individual, leading to a most necessary document called a “release of information”.

The complexities of multi-systemic care for individuals with developmental diagnoses, particularly children, make the understanding of confidentiality and use of releases of information critical to the child and family.  It is all the more important when considering children generally do not, due to their developmental/cognitive stage, grasp the more abstract aspects of implications and consequences stemming from confidentiality around private information beyond a basic understanding of the concrete definition “My information is private and not to be shared”.  Consequently, children and those with developmental diagnoses may not understand the importance of sharing information with providers or the limits on sharing and may run the risk of sharing too much; the consequences of doing so are often irrelevant or not understood in that moment.

Helping children with developmental diagnoses understand confidentiality and its uses and limits, along with release of information, is important to ensuring smooth flow of helpful information to all service providers so the best care can be given.  Since many children with developmental diagnoses often struggle with the pragmatics (day-to-day appropriate usage) of social interactions, and the crux of confidentiality is the appropriate management and protection of information shared in a social setting, a social story can be an excellent tool for teaching your child about confidentiality, its uses, limits, and most, importantly, its relevance to the them. 

I have created a social story, which you can find at the end of this post, explaining confidentiality and explaining releases of information.  Please note that social stories are more effective when images are included to help establish the retention of the concept; I have purposely not included images with this story for that very reason.  You know your child best and what visuals they respond to best.  Please use the stories and add your own images that your child will respond most to.  The story can be used as is or broken down into confidentiality and parental consent and releases of information, depending on how your child processes information.  The story will be all the much more powerful.  Also remember that you can tailor this social story to a specific provider or providers as you need to.  I have opted to use “therapist” for purposes of creating the example.  The stories here are templates and more effective when made relevant to your child’s situation.  Lastly, your use of the social story will be enhanced if you introduce it in advance of the situation where your child needs to know about confidentiality and releases of information.  Please refer to my post about social stories for further information and suggestions.  Good luck and remember that understanding confidentiality does not need to be complex or something requiring memorizing government regulations!

LET’S LEARN ABOUT CONFIDENTIALITY AND SHARING PRIVATE INFORMATION!

Today I am going to meet with my therapist for the first time.

A therapist is someone who is specially trained to work with children, like me, deal with tough problems happening in my life. 

Some examples of tough problems a therapist can help me with include dealing with bullies, being in charge of my emotions and understanding them, and how to express myself appropriately.

When I meet with my therapist, I am creating a special relationship where I can trust them to help me and I can share what is bothering me.  I know they will listen to me

This type of special relationship is called a client-patient relationship.

Because of this relationship, my therapist and I are able to talk about my (insert what child is seeing therapist for) together. The information I share will remain private and will not be shared with anyone.

My therapist will not share what I tell him/her with anyone else because it is CONFIDENTIAL.

This protection of my private information by my therapist is called confidentiality.

I understand that I do not know my therapist when I start working with them.  My therapist understands I may need time to trust them before I will be willing to share my private information (insert what child is seeing therapist for).

The more comfortable I am with my therapist, the more private information I can share with them about my (insert what child is seeing therapist for).  My therapist can be more helpful to me when I share information with them.

Because of our special client-patient relationship, my therapist understands that it is very important to keep what I share with them private so I feel comfortable sharing (insert what child is seeing therapist for).

My therapist knows not to share what I tell them unless I tell them they can do so.  This is called giving permission. 

My parents are also responsible for keeping my information safe since they take care of me.  When they give permission to my therapist to know my information this is called PARENTAL CONSENT.

Parental consent is very important because my parents have to decide who can know my private information so they can give me the best help. They consent to providing information about me because they believe it will allow others to help me.

There will be times when it will be important for my therapist to get consent so he/she can share information from my parents with other individuals who help me such as my doctor, school teacher, or school counselor.  He/she will talk to my parents to get permission to share my information.

My therapist needs to share information that helps keep me safe, such as if I tell them I am being bullied, or if I am in danger, and to help my other care providers do the best job they can taking care of me.  (You can add your own relevant examples).

In order for my therapist to share my information safely, my parents need to sign a RELEASE OF INFORMATION.

A release of information allows my parents to give permission to my therapist to speak only to care providers my parents and I want him/her to speak to.

My parents and I will describe what information my therapist can share with other care providers on the release of information before signing it.

I know my parents and therapist will help me understand why my information is being shared and answer any questions I have.

Confidentiality, parental consent, and a release of information are very important and are required by law.

I can feel comfortable working with my therapist knowing he/she has to follow the law and wants to help my parents keep my private information safe.

END OF STORY

 "© Jonathan Rhoads (2017) PERMISSION TO USE OR MODIFY GRANTED IF CREDITS ARE MAINTAINED" 

*Miller-Keane Encyclopedia and Dictionary of Medicine, Nursing, and Allied Health, Seventh Edition. © 2003 by Saunders, an imprint of Elsevier, Inc. All rights reserved.