Navigating social media for parents and 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 families managing a new autism diagnosis to see. Seeing post after post about other 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 your time and money and potentially causing harm to your family.

Your family's safety and privacy

Being part of a community, especially one that understands the challenges of autism, can be liberating. 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. 

The decision to share any personal experiences or situations involving your autistic child online should be approached with caution. While openness can lead to support from others, it can compromise your child's or your family’s privacy if you’re not careful. Weigh up the benefits of sharing personal stories or information against your child’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 involving children, there are safety and ethical concerns families must consider. Here are some things to consider before sharing photos or videos of your children online:

Consider why

Whether you post to express pride, call for community support, or share 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 teaches them how to have 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 learning to tie your shoelaces, and I’d like to share this video with your grandparents. Is that okay?’ 

Always seek consent from other parents before posting or sharing images that include their children. This is courteous and helps maintain trust and respect for other families’ preferences. When in doubt or if you cannot seek 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, your child’s school uniform, or any other details identifying them. Sharing these details publicly can expose your child to online and offline safety risks. 

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 the platform or third parties can use your posts. 

Share photos and videos without using 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 raising children. 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 to disrupt normal conversation and get a reaction. This behaviour can vary in severity from mild irritation to serious harassment. Some users will even comment or join online communities for the purpose of trolling others, which is something to be aware of in online groups. 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, giving them the courage to say things they wouldn’t usually say in person. This can also apply to other people online who are not trolls, but it is something to be mindful of.
• 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.
• Getting defensive when confronted or exposed, usually reverting to insulting or attempting to silence other people
• 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 can an individual's mental and emotional 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 the steps you should 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, which 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 judgement. 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 local communities, joining support groups in person, and even professional counselling are other fantastic ways of seeking support, particularly in the early days of your child’s diagnosis. 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.