Getting Started with Social Media

Medical Home Portal on Social Media

The Medical Home Portal administrators realize that many families use social media. Since the Medical Home Portal strives to provide accurate information to families and their providers, the administrators utilize some of the most popular social media platforms to try to reach families. Portal Facebook and Twitter posts are intended to be useful to families and providers and we strive to provide trustworthy information.

Overview of Social Media

Social media platforms, websites, and applications enable people to quickly share information with other social media users and the general public. Much of the information that is shared focuses on personal experiences of everyday life. For example, someone might post a comment about a restaurant they are visiting for lunch or share pictures from a birthday party. However, businesses and other organizations also use these social media platforms to interact with individuals in their communities, and to share information and gather feedback about their organization. However for families of children with special needs it provides a much needed and timely support and resource system. Parents can access quick answers regarding the many different issues, challenges and share the victories with others “who get it”. Social Media has become an important way for families to not be so isolated and have a virtual network of other parents and caregivers at the time of need, even if that is in the middle of the night.
Each social media platform has its own terms, and the lingo is sometimes confusing. Please refer to the Glossary below to review terms used by various social media platforms at the time of publication.
The individual using social media, providing a posting, or sharing information, is required to have an account with that social media platform (Facebook, Twitter, etc.) and the account is generally associated with personal information about that user, such as name, age, and address. Usually, individuals with an account will interact (“follow,” “like,” “link,” etc.) with other account holders. Posts are usually ordered with the most recent post at the top of the page and older posts following further down on the page. Many platforms have age limits restricting use to teenagers and adults. The Children’s Online Privacy Protection Act (COPPA) requires operators of websites or online services to ensure that children under 13 years of age don’t share their personal information on the Internet without the express approval of their parents.
The content shared in the Medical Home Portal is intended for parents, primary caregivers and providers of children with special needs.


Comparing Personal and Organization Accounts

While some platforms have different account types for businesses/organizations and individuals, most require an individual account to be linked to the organization account. For example, Facebook has a separate type of account or “page” for nonprofit organizations, but the administrator of that account must have a personal Facebook page. Twitter, on the other hand, does not differentiate organizations from individuals but still requires an individual to establish the account. Usually, an email address is required to establish accounts.
Why does this matter? Consumers and families should watch for indications that an account belongs to an individual, for-profit business, nonprofit organization, political organization, club, or other type of group. Knowing who is behind an account will help you to better understand the information you find there in terms of bias, purpose, and trustworthiness. For example, a post on social media about the benefits of a particular treatment for autism has different trustworthiness and different aims when it is posted by the parent of a child with autism, a business that sells a product claiming to treat autism, a nonprofit organization claiming to help families find treatment resources, or a government organization claiming to provide research about a treatment method. Remember, too, that social media platforms do not monitor their account holders very closely. Someone can make up a fake organization with a fake account holder and use that account for scams. Social media can provide a wonderful addition to your community and resources, but it’s important to maintain a critical and questioning eye, too.


Many social media platforms use advertising to generate income. The advertisements are usually targeted to certain types of users or account holders. Social media platforms use powerful search engines to review account-holders’ posts and personal information, and then target advertisements to help advertisers products, thereby encouraging them to purchase more advertising in the future. For example, if you are a twenty-one-year-old female who lives in New York City and post about a new purse you just purchased, you are likely to see advertisements on your account for local stores that sell purses, as well other products that might be of interest to young women. Similarly, if a family posts about their child with cerebral palsy, they may see advertisements for assistive devices or summer camps for children with special needs. Additionally, any other accounts that are linked to that particular social media account, such as Gmail, Google+, Google Play, Google Maps, Google Search, etc., will share information to target advertising. Some users find these targeted ads useful in helping them find products or services they are interested in, but for many people these ads are an invasion of privacy. The important thing to know is that social media platforms are able to gather quite a bit of information about their users, and not all of this information is kept private. If you are concerned, be sure to read the privacy policy of a social media platform before you sign up for an account.

Monitoring Posts

Some online groups provide some monitoring of users accounts and posts, but humans do not monitor most social media platforms. A Yahoo Group or Facebook group may have an administrator that reviews information, either before or after it has been posted. Check the rules for any group you are interested in joining or following.
Most social media platforms have reporting systems to help account holders with problems. For example, Twitter and Facebook allow a user to block or report followers they do not want, or who are posting offensive material, from excessive, unwanted advertisements to pornography. While most social media platforms have terms and conditions that prohibit bullying, families should be aware of the potential for users to intimidate children. Additionally, families should be cautious if they choose to meet other media users in real life, since some users may provide inaccurate information in their profiles and through discussions with other users.

General Privacy Tips

Privacy Settings

Some social media platforms allow account holders to keep some personal information private. If a platform has privacy settings, your family can decide how public you want your information to be and set the privacy settings to those limits. Each social media platform will have different tools you will need to understand in order to adjust the settings. There are usually default, or starting, privacy settings that share some information. It may take some reading to understand and set privacy settings, but it is worth taking the time to do so.

Limiting Information in Posts

As you post on social media accounts, try to remember that other account holders and, often, the general public can see your posts and the information you have not kept private. If you select privacy settings that hide birthdates and addresses, but post an invitation to a party at your home, and then receive happy birthday wishes on your birthday, then the public now has two pieces of personal information about you. Personal information can be misused by criminals or used inappropriately by marketers and scams. Such information might include pet names, relative names, middle names, social security numbers, phone numbers, favorite things, and childhood memories. Be wary about your posts and privacy settings, and try to limit information about planned vacations that will indicate when you will be away from your home.

General Posting Etiquette and Ownership

Content Etiquette

As you post information on social media platforms, try to keep the posts appropriate. Families often allow older children to read content on social media sites as they learn about their own disability. Keep this in mind as you make posts. Ask yourself, “Would I let my children or grandmother read this post?” Try to avoid offensive language, rumors, personal attacks, and sharing too much personal information or intimate details. Your child may be struggling with acting-out behaviors, but your child would probably not appreciate you providing strangers with all the details of her destructive, explicit, embarrassing or potentially illegal behaviors. If you make any complaints about businesses, providers, or other families those individuals may read them. Try to keep your complaints respectful and civil, using language that you would use if you were speaking directly to the individual in front of the public. Remember that other organizations, such as insurance companies and employers, will also read your posts. If you are requesting benefits or equipment for your child, those organizations may visit your social media accounts to see if they find information that contradicts your request or that demonstrates inappropriate use.

Picture Etiquette

Post pictures you would share with your grandmother, boss, and the next person you ask for a job (remember that a picture of a young child in a bubble bath may seem innocent to the family, but there are others in the general public that may view the picture differently).
Once you post pictures, documents, or files, to a social media account, the social media platform usually owns those files. The fine print of the user agreement for the social media platform may allow the social media organization to use pictures in advertisements. The social media account may allow you to delete your pictures, but they still remain on the servers of the social media platform, such as Facebook, and on the electronic devices (computers, tablets, phones, etc.) of anyone who downloaded them. There are so many people that use social media and post pictures, making it unlikely that a picture of your child will be used in advertising, but it is possible. Remember to ask others for permission before using, sending, or posting their pictures.


Social media groups are collections of users who share an interest in a particular topic or activity. Even around a medical topic, such as autism, there are many groups that focus on different sub-topics, from insurance to causes to treatment, and many other topics. Groups are usually “closed,” meaning that users have to sign up or apply to be a part of them. An administrator, often the creator of the group, usually decides who can join. Posts within the group may be monitored or not. Posts are usually comments, questions, or responses to questions. Some platforms have no text or size limit. The accuracy and truthfulness of posts may not be monitored or verified. Since groups only include members that usually agree with the group, there may be little opportunity for people with opposing views to see and comment on the posts, leading to greater bias and risks of “groupthink.” Groupthink happens when a group accepts a position or theory based on peer pressure, or lack of other information, even though some members of the group may secretly disagree with a position or know that it is false. Social media groups can provide a great community of like-minded people, and sometimes they offer useful information, but make sure to seek out varied perspectives and reliable resources to verify the things you learn about on social media.
Users join groups for various reasons. Some people are seeking others like themselves, or they want to share their experiences, and hear about others’ experiences. Similar to joining an in-person support group in their local city, online groups may offer families the first opportunity to find others facing situations similar to their own, such as having a child with a very rare genetic condition. An online autism support group may help families find treatment resources; tips for adapting to daily routines, and autism-friendly events. Users often share personal information within groups, and they ask or answer questions posed by other group members. Users may feel a sense of safety from the closed group and the virtual community of like-minded members.
However, due to the personal nature of posts on group sites, members sometimes post complaints or comments about other members, organizations, or providers that they would not usually share in face-to-face conversations, or public venues. Be cautious in what you post and read on groups, as with other social media. There may be other families in the group who have the same provider, or the provider himself or herself, may be members of the same group and read those complaints. When families have complaints about an organization or provider, sharing those complaints directly with the organization or provider is usually the more appropriate way to seek resolution to problems.

Types of Social Media

The following is not an exhaustive list of social media types, but offers an overview of many popular platforms.
Facebook is well-known social media platform that allows users to connect with “Friends” and other personal connections. Posts are usually brief, and can include pictures and links to other websites.
Facebook allows you to set your privacy settings to decide who can see your profile, posts, or photo albums. Families should remember that pictures posted to Facebook, like other social media platforms, become the property of Facebook and can be used in its advertising.
Businesses, nonprofit organizations, clubs, and other groups can have Facebook pages. Users must be over 13-years-old but younger children may find unauthorized ways to create or access accounts.
Twitter is a very popular platform designed for short messages that may include links to other websites, users, pictures, and topic streams. Messages must be 140 characters or fewer. Many users post “news” items to let “Followers” know what is happening on a particular topic. Hashtags (the “#” symbol followed by some characters) are often used to place messages into topical “threads” or groupings. Twitter has been used as a powerful tool in political events and revolutions.
Organizations and individuals may have Twitter accounts. The account holder must be over 13 years old and families are encouraged to talk to their children about what they see on Twitter since the posts are available to the public.
Google+ is integrated into a user’s Google suite of applications and contains other features, such as games, photo sharing, videoconferencing, and event posting.
Another Google application, YouTube allows users to upload videos for the general public. Videos include entertainment, commercial advertisements, instructional content, and home-videos. You can also choose password protect video content if you wish to share it with only a select group of people.
Myspace is another large platform, similar to Facebook, which allows users to share information about their lives and interests. Myspace users are generally teenagers and young adults. Music is a key feature of the platform and users can listen to uploaded songs, playlists, or radio stations. The platform has a “bulletin board” feature, blogs, picture sharing, instant messaging, and video sharing.
LinkedIn provides a way for professionals to connect with each other. Increasing their number of connections helps professionals network with each other, seek new jobs and other professional opportunities. Employers post jobs and screen potential candidates. Organizations can form groups to connect their employees to each other, post jobs, make announcements, and hold discussions. Basic accounts are free.
Pinterest allows users to post or pin pictures and images to their account. The images are organized into topic groupings and can link to other websites. Users can “re-pin” an image they find on another Pinterest page to further share or promote it. Similar to other social media platforms, once the image is posted, Pinterest keeps a copy and Pinterest or other users can then use the image. Accounts are available to both individuals and businesses.
Instagram allows users to post photographs to their account. The images can be tagged, labeled, and even posted on other social media platforms, but Instagram does not allow links to other websites. Similar to Pinterest, the images may be personal photos, or pictures of text such as favorite sayings, advertisements, or documents. As with other social media platforms, there is controversy regarding the ownership of the image and whether Instagram has the authority to sell users’ images.
Blogs, or web logs, often contain longer posts than other social media types. While they sometimes convey information, they usually include the personal insights or stories of the author. Although a blog post may seem similar to a news story, blogs are not typically an objective reporting of a topic. Blogs are often personal online journals, and the user can determine who has access to the content.


  • Account: Registered access to a product such as an internet social media platform.
  • Account Holder: Individual who has registered access to a product or social media platform.
  • Administrator: Individual or group of individuals (administrators) who are allowed access to an account for the purposes of managing or modifying the account including the profile and content.
  • App or Application: a specialized software program that runs on your mobile device or your computer and provides access to an internet-based program.
  • Blog: An abbreviation of “Web log,” which is a newsletter or personal journal posted on the Internet. Blogs include text, optional images, links, and reader comments.
  • Default: Original or starting settings. Some settings may be able to be changed from the original setting while other settings may not be able to be changed.
  • Download: Accessing a file from the Internet and making a copy on a user device.
  • Dumbphone: Cellular phone that does not access the Internet or have other advanced features, but may include camera and texting ability.
  • Endorse: A Linkedin designation that confirms that another user has the skills as listed on their account.
  • Feed: Ongoing lists of posts, usually listed by date with the most recent post at the top of the list. See also Timeline.
  • Follow: The act of subscribing to another user’s posts on Twitter, Instagram, and other social media. The posts of followed users are inserted into the feed for the subscriber or “follower.”
  • Followers: the users that follow another user in Twitter, etc. Followers are displayed in a list.
  • Following: Users that are subscribed to a single user of Twitter, etc., displayed in a list.
  • Friend: To invite or be invited to connect with another user on Facebook.
  • Friends: Users that are connected to another user on Facebook.
  • Like: to endorse, support, or agree with a post on Facebook.
  • Link: (1) to connect with other users on LinkedIn (2) a URL that connects to other web content on the internet or world wide web; usually a page, file, or image.
  • Going Viral: See Viral.
  • Handle: the public username for a Twitter account, displayed in the URL on the social media page and preceded by the @ symbol. Other users can send a direct message to the user using the @ symbol followed by the handle.
  • Hashtag: On Twitter and Facebook, using the # symbol with a word, phrase, acronym, or other text will cause post to be listed in an aggregate of posts with the same topic thread.
  • Monitoring: The process of checking posts for inaccurate or offensive content, performed by one or more users or administrators.
  • Organization Account: Social media account for a business, club, or other group rather than for an individual. An organization account may have a different display or appearance and may have additional administrative features.
  • Personal Account: Social media account for an individual user.
  • Platform: A social media site, software, or business organization that provides access and hosts a network of accounts.
  • Playlist: Lists of songs, videos, or other media on the user’s personal device or user account that may be private or shared with other users.
  • Pin: On Pinterest, the act of posting an image on a user account (verb form), or the posted image itself (noun form). On Facebook, placing a post at the top of the user account page rather than only having the post in the list of posts or the timeline.
  • Post: Used as a noun or a verb. The picture, text, or other item that a user presents on the social media platform. The act of placing the item on the social media platform.
  • Re-Tweet: On Twitter, re-posting another user’s post (Tweet) for the purpose of sharing it with followers.
  • RSVP: Asking for a response or responding to a request. The acronym for the French phrase, “réspondez s’il vous plait” or “please reply.”
  • Scam: Request or post that is used to trick other users into providing personal information, money, or access to their electronic device (computer, tablet, phone, etc.). Scams include phishing, Trojan horses, and other methods.
  • Smartphone: Cellular phone that can access the internet and usually has other functions such as the ability to use apps.
  • Social Media: Electronic platforms and applications used to allow and encourage people to build virtual social networks, connect to each other online, and share information.
  • Tag or Tagged: Providing brief information about an image, such as listing the people in or the location of the picture. Generally increases the ability to search for images, people, and places.
  • Thread: Multiple postings about a specific topic. Usually in reverse chronological order.
  • Timeline: The list of posts from a user on Facebook, usually in reverse chronological order with the most recent post at the top of the list. See also Feed.
  • Upload: Moving a file from a user device to the Internet.
  • URL: Uniform Resource Locator; Internet address.
  • User: Individual account holder.
  • Username (see also Handle): Publically displayed name or nickname for the account holder or organization.
  • User Agreement: Legal contract between the account holder and social media platform.
  • Viral: The phenomenon of a post, video, or image being re-posted or rapidly spread from user to user (the way a medical virus replicates itself). Also known as “going viral.”


Information & Support

For Parents and Patients

Kids Online Privacy
The FTC has several good videos about young people staying safe while online.

"Generation Like"
The PBS show Frontline recently aired a program “Generation Like” that delves into the “the evolving and complicated relationship between teens, social media, pop culture, and big brands.”


Authors: Alfred Romeo, RN, PhD - 7/2014
Tina Persels - 7/2014
Reviewing Authors: Shena McAuliffe, MFA - 7/2014
Gina Pola-Money - 7/2014