Understanding social media for parents / carers

The internet and social media can help us connect with others, but it can also have its risks, particularly for parents and carers of autistic people. 

The online world can have fantastic information and community support, but it can also expose families to misinformation, intense debates and even harassment. Find out how to use social media to support you rather than add to your stress. 

Understanding the impact of social media

Images and videos of ‘perfect’ people on social media can be difficult for autism families to see. Seeing post after post about your friend’s children achieving milestones or enjoying family outings that aren’t accessible to your child can make you feel isolated or encourage you to compare your family and your parenting to others. It’s important to remember that every family is unique and has struggles, no matter how perfect their life may seem online. 

It’s not uncommon to see some strong opinions on social media, particularly around autism. What can even start as a harmless post or discussion can quickly descend into a toxic debate or see users targeted by trolls or individuals looking to push their agenda. Be selective about the discussions you engage in on social media to protect your own privacy and wellbeing. Remember, it’s not your responsibility to educate everyone about autism, or correct every rude comment; often, these people are trying to bait you into an argument, anyway. 

Although the internet is full of excellent autism information, there’s also plenty of pseudoscience and misinformation, too. Be wary of websites that promise ‘miracle solutions’ to ‘cure’ autism or address challenging behaviours - you’ll quickly find that these aren’t supported by any evidence or science. Doing your research when looking at any service provider or professional advertised online will help you avoid wasting both your time and money, and potentially causing harm to your family.

Your family’s safety and privacy online

Being part of a community, especially one that understands the challenges of autism, can be empowering. However, it’s important to remember that autism affects individuals differently, and no two families or autistic individuals will have the same strengths, support needs or background. 

Be cautious when deciding to share personal experiences or situations involving your autistic person. While being open can lead to support from others, it can compromise an individual’s privacy if you’re not careful. Weigh up the benefits of sharing personal stories or information against an individual’s right to dignity and privacy, particularly if the post were to be re-discovered. 

Sharing photos and videos online

Sharing photos and videos on social media has become a regular part of life. However, when sharing content that features other people, particularly people with disability, there are safety and ethical concerns families must consider. Here are some things to consider before sharing photos or videos of others online:

Consider why

Whether it’s a sense of pride, a call for community support, or just sharing a moment of joy, understanding why you post helps your social media behaviours reflect your values.

Seek consent

Where possible, involve your child in the decision. This respects their personal boundaries, makes their opinion feel valued, and helps them practise having conversations around consent and take ownership of information shared about them, which are important self-advocacy skills. You could start this conversation by explaining why you want to share the photo and who can see it. For example: ‘I’m proud of you for getting your first job, and I’d like to share a photo of you in your work uniform with your grandparents. Is that okay?’ 

Always ask for consent from other parents or carers before posting or sharing images that include their children, no matter how old they are. This helps maintain trust and respect for other families’ preferences. And when in doubt, or if you cannot ask permission, it’s best not to share. 

Consider privacy

Before uploading a photo or video of your child, consider what private information your post might reveal. Avoid sharing images showing your home address or other private information. Sharing these details publicly can expose your child to safety risks online and offline. 

Be mindful of the metadata embedded in digital photos, including the location, date, and time the photo was taken. Many social media platforms may strip this data, but some might not - keep this in mind or research how to protect your data on different platforms. 

Review the privacy settings on your devices and/or social media accounts to control who can see your posts. Additionally, make sure your friends understand your privacy preferences before they share or tag photos of your children. Every photo shared contributes to your child’s digital footprint, which can grow and remain online indefinitely; it’s crucial to consider how the images you share might affect them in the future. 

Consider terms of service and community guidelines

Many online groups have rules or community guidelines to keep their members safe. When posting in a group, consider whether the photo or video respects the community guidelines or if the group is a safe space for you to share personal content. If a group does not uphold their guidelines well, or you have seen instances where other parents/carers have experienced harassment, consider carefully what you post or comment.

It’s important to remember that once a photo is uploaded to a social media platform or in a group, it may become the platform's property. Always read the terms of service to understand how your posts can be used by the platform or third parties. 

Share photos and videos without social media

There are also ways to share photos of your children that don’t involve social media. For instance, sharing via email, secure online services, or messaging services (e.g., group chats with family or friends only) can provide more control over who views your photos and how they are shared.

While sharing photos online has risks, there are also positives. Sharing can encourage a sense of community among families, provide emotional support, and help parents and carers through the challenges and joys of having an autistic person in their family. It’s about finding the right balance that respects your child’s privacy and your desire to connect with others.

Addressing online trolling, bullying and abuse

One of the challenges the anonymity of the digital world can present is trolling. Trolling is a form of online behaviour where individuals deliberately provoke, upset, or bait people into reacting emotionally. Often, trolls post controversial, inflammatory, or off-topic messages in online communities with the intent of disrupting a conversation and getting a reaction. This behaviour can vary in severity from mild irritation to serious harassment. Common characteristics of trolling include:

• Saying things they don’t believe or exaggerate their true feelings to provoke a response.
• Hiding behind fake names or profiles gives them the courage to say things they wouldn’t usually say in person.
• Downplaying the seriousness of their actions and saying that those upset by their behaviour are overreacting or need to toughen up.
• Targeting individuals or minority groups to humiliate them based on characteristics such as race, religion, gender, sexuality or disability.
• In some instances, trolls encourage others to join in, creating a pile-on effect to overwhelm the targeted individual.

The impact of trolling can be significant and affect an individual's mental health and wellbeing. People who are targeted by trolls may experience stress, anxiety and depression, and the impersonal and often aggressive nature of trolling can make individuals feel isolated, attacked, and powerless. 

If you’re experiencing trolling, or you know someone who is, here are some steps you can take:

1. Don’t feed the trolls: Engaging with trolls only fuels their behaviour. Ignoring attempts to bait you is important, as responding can escalate the situation.
2. Collect evidence: When trolling becomes harassment, it’s important to collect evidence such as screenshots, logs, or recordings to report the behaviour.
3. Use platform tools: Most social media platforms and online forums have tools to report and block trolls or turn off post comments. Learn how to stop trolls from contacting you on your social media platforms.
4. Seek support: Online harassment can be distressing. Reaching out to friends, family, or professionals for support can help reduce the emotional toll of dealing with trolls.
   

In some situations, victims of severe trolling that involves harassment, abuse, threats to safety, or hate speech can take legal action. If you believe you are being trolled in this way, collect evidence of what is happening and report it to the police.

Finding supportive online spaces

Despite these challenges, the internet can also offer positive support and genuine help to autism families. Many online communities are monitored to prevent and address bullying and misinformation and can provide comfort and advice that is practical and empathetic.

Finding the right community requires research and often some trial and error. Look for groups that value respect, privacy, and individuality, avoiding those dominated by negativity or judgment. Positive online spaces encourage sharing experiences and advice in ways that uplift rather than compare or criticise.

Balancing online and offline life

While the online world can be fantastic, it’s important not to depend on it to meet all of your needs. Engaging with your local community, joining in-person support groups, creating circles of support and seeking professional help are other fantastic ways of getting the help you need. These connections and professional support options can provide a sense of belonging and support that virtual ones often cannot fully replicate.

As wonderful as the online world can be, make sure time spent on devices isn’t replacing family time or other important activities, such as exercising. Remember, the online world should enhance real-life connections and experiences, not replace them.