All three of us are parents (each of us have two kids) and educators who are aware of the need for guidance when posting about parenting on social media.
We have all found social media helpful when attempting to connect with others (e.g., family, friends, other parents) but have also been hurt by posts from other parents and caregivers. As a result, we have put together a list of concerns around social media posts that parents with children on the autism spectrum may have and how to address them.
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The three of us have a complicated relationship with social media in terms of our parenting and discussed some of the issues parents face, especially as Bethany and Maggie worked on their chapter about better babies contests (early 20th century) and developmental milestones (e.g., crawling, talking, walking, pincer grasp, etc.) as documented on social media.
Dan relates to social media challenges specifically as the parent of an autistic child. We believe this is a list you could share with people in your life who do not parent a child with autism.
1. Language is constantly changing and families approach language in various ways:
Our personal language choice of “autistic” is in support of the preferences of many (but not all!) in the autism community, who emphasize that “autistic” acknowledges autism as intrinsic to an individual’s identity. “Child with autism,” on the other hand, separates the disability from the person in a way that often stigmatizes it. There are ongoing debates on this subject, and some parents may prefer “child with autism” or similar constructions.
We are also using the word “neurotypical” throughout the rest of this list. For us, “neurotypical” does not mean “non-autistic,” and it is not derogatory. It means performing in a way that fits with dominant standards for “normal” neurological and cognitive functioning. In emphasizing the experiences of parents of autistic children, we do not intend to speak for the experiences of autistic individuals themselves. Relationships between autistic persons and their parents or caregivers are subject to ongoing debate, and are ultimately too complex and diverse to be captured in a single article.
What words do your friends and family use to describe the people they love? How do they frame their experience? Consider this carefully before posting during “Autism Awareness” weeks or months. Not everyone wants to “light it up blue,” and that is okay.
2. Parenting Challenges:
Parenting challenges are a frequent topic of social media posts. They have the potential to build community around the shared difficulties and worries of raising a child. They can also unintentionally alienate, isolate, and exclude your friends with autistic children. To be clear, this shouldn’t be a competition of “who has it worse,” and it isn’t possible to always “get” or account for the experiences of your friends or family members with autistic children.
But a good guideline for posting about your own parenting problems is to consider a taken for granted factor that comes with the difficulties of raising neurotypical kids. For example: managing after-school schedules, being pulled away to birthday parties on weekends, or taking your children out to dinner can all involve legitimate frustrations.
Compare this, however, with what it might be like to have children with motor planning or social challenges that limit their participation in sports, to never being invited to birthday parties, or to dealing with stares and snickering from other children when you go out for pizza.
When you post in an effort to commiserate with other parents, consider the benefits of building community with parents of neurotypical children against the costs of possibly alienating your friends with autistic children; is this a problem your friends with autistic children would “love” to have (e.g., “my child talks all the time!”) or is it perhaps one they can sympathize with (e.g., a scare at the doctor’s office)?
Your friends with autistic children probably recognize you have legitimate struggles, but if you do the work of weighing and comparing what you face and the daily struggles they face, that work will show.
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3. Developmental milestones:
We live in a development-obsessed culture, where disabilities like autism are often represented as realizations of parents’ worst fears. This is largely because autism is treated as a medical pathology rather than as a diverse and legitimate way of being in the world. For this reason, some neurotypical parents of autistic children believe they must “fix” their child, while others try to un-learn associations with pathology to embrace autism as inherent to their child’s personhood.
Wherever parents of autistic children are in the process of addressing or accepting their child’s disability, posts celebrating developmental milestones like first steps, first words, or graduations can often bring up feelings of loss over abilities or accomplishments they may never experience. For autistic children deemed “high functioning” (more on this as a problem below), the outside appearance of typical development may leave you unaware of substantial challenges around sensory sensitivities, communication difficulties, or pressures to appear “normal” in order to prevent bullying and stigmatization.
Many parents of autistic children face the prospect of never having a conversation with their child, or have to worry about serious injuries due to motor planning challenges. Remember: framing helps. Frame the announcement as something particular to your kid, and acknowledge that individuals are different with a range of experiences. Even a quick nod to the broader issues can help dispel some of the tension of milestone culture.
For example, is your sweet kiddo walking now? That’s amazing! Maybe a post with a caption like, “There are lots of different kids with different bodies and different ways of being. Today our kiddo took his/her first steps!”
4. Diagnoses, jokes, and stereotypes:
Increased awareness of autism has also brought about an increase in the use of popular but sometimes problematic terms and images. For example, parents with autistic children are often asked whether their child is “high functioning” or “low functioning.” This is very common language; doctors and therapists use it frequently when talking to parents of autistic children, and some parents may use it themselves.
Just be aware these labels might reduce unique, complex individuals down to a list of what they can and cannot do. In addition, autistic individuals labeled “low functioning” are often underestimated, while autistic persons labeled “high functioning” are often denied necessary services and support. “High functioning” and “low functioning” belong to a longer list of common terms to be aware of when posting on social media. Glossaries of problematic and preferred terms, and guides for language use, are available online.
It is also important to be aware of stereotypes, especially as autism is being represented more and more in popular culture. Common pop culture stereotypes include savantism, social awkwardness, lack of empathy, inability to communicate, and behavioral instability. Unfortunately, increased awareness of autism has also made these stereotypes popular.
People often describe socially uncomfortable coworkers as “on the spectrum,” or joke that people exceptional in math must be autistic. Such jokes are not merely limited to uninformed people; they’re remarkably common and hurtful and should be avoided. For kids, try the book by “When Charlie Met Emma” by Amy Webb on Amazon and check out her tips at the end of the book for navigating issues of bodily and social difference in public spaces with your children.
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Reading up on these problems doesn’t guarantee you’ll always use terms “correctly.” Generally speaking, we advise trying to learn what terms are problematic so you can avoid them. Or, you can try to avoid labels and armchair diagnoses altogether.
Here are some tips you can share with caregivers who do not have a child on the autism spectrum:
- Before you post, pause!
- Follow, like, and comment on accounts that illustrate and celebrate neurodiversity
- Unfollow accounts that do not celebrate neurodiversity
- Be aware some parents of children with autism may feel isolated
- For some parents without children with autism, parenting “gets easier.” However, some parents have increased needs like more meltdowns, stronger bodies, and/or lack of accessibility, so it may be easier to stay home
- While some parents go out on dates (pay babysitters) or adult-only vacations, parents of special needs children spend a lot of money on medical bills
- Be aware some kids are not invited to birthday parties, etc.
- Some complaints are difficult to hear, like “My kid talks all the time!”
This article was featured in Issue 95 – Managing Autism Together