Naturally, parents have a lot of questions about autism when their child is first diagnosed. There are a lot of supportive facebook groups which allow parents to ask for advice and insight from autistic adults.
Here are a few guidelines on how to respectfully ask an autistic person for advice:
Many autistic adults understand that parents new to their child’s autism diagnosis will inevitably say something “wrong” or offensive, whether it’s using the terms “severe autism/high-functioning autism,” using person-first language (“with autism”) to refer to all autistic people, or misinterpreting their child’s behavior as having negative intentions toward the parent.
Parenting is hard, regardless of neurotype. Autistic adults understand that. But we also need parents to understand that we get many questions every week or even every day about helping their children, and it takes an emotional toll.
Sometimes, especially on bad or stressful days for parents, these questions can be shrouded in ableism and venting about the autistic child, even sometimes blaming them. It’s important for parents to remember that when their child grows up, their child may be the one giving advice to parents.
Ask yourself how you would like your autistic child to be treated in that situation. Ask yourself if your language is respectful of both the autistic adults you’re asking emotional labor from, as well as to your autistic child.
1. Don’t use functioning labels
Although functioning labels may be used by doctors or psychologists, aside from the Level 1/2/3 autism diagnoses, they are not diagnostic terms. Instead of “severe autism,” say “autistic and nonverbal” or “autistic with epilepsy” or “autistic with an intellectual disability.”
And really, only say those things if it’s relevant to the question you’re asking. Usually, just saying “autistic” is enough.
Another term that might be helpful is “high support needs,” but again, only clarify that if it’s relevant information. Functioning labels aren’t specific to individuals and only perpetuate myths about autistic people. You can qualify what struggles you’re currently having by simply explaining the details relevant to the advice you’re seeking or obstacle your child is facing.
“Severe autism/high-functioning autism” are not diagnostic terms, nor are they very helpful.
2. Don’t blame “the autism”
Parents have rough days sometimes, whether or not their child is autistic. However, those days are often when parents of autistic kids want help. This is why some questions can come across as venting about their autistic child rather than genuinely asking for support. Many of these questions are presented like this: “Suzie was so disruptive at the grocery store today and had a meltdown. It was so awful, and people just stared at us. How can I stop her from melting down?”
A way to be more empathetic to your child might be, “Suzie was so distressed and overwhelmed in the grocery store today and had a meltdown. I didn’t know what to do. People were just staring at us. What is the best way to help her in that situation?”
Another way parents often blame “the autism” is by framing “the autism” as doing something, as if it’s separate from the child. For example, “Her autism made us have to stay home for the day.” This subtlely implies the autistic child is the problem, instead of addressing the autistic child’s distress with leaving the house.
Another example is when autistic children are being interpreted as “talking back” to the parent, when often the child is asking a question or wants to clarify a statement due to anxiety. A parent may have misinterpreted the child’s stressed out tone of voice as anger or defiance.
Some parents have also thought their autistic child was intentionally being manipulative, rather than in sensory distress or genuinely upset. I often say that with almost any behavior, there’s almost always a reason for it. Whether it seems like a good reason to the parent or not, it’s still a reason which likely needs to be understood and supported.
3. Misinterpreting behaviors as negative intentions
Some parents, especially in stressful situations or after a particularly difficult day, may write in the heat of the moment that their child is purposely disrupting a space, or harming them. For example, some autistic children, especially young children, may hit their parents when they are upset.
Parents may assume that their child doesn’t like them or is doing this on purpose to hurt them, when often it is because the autistic child is highly distressed due to change in routine, frustration of trying to communicate their needs, or sensory distress, overload, and pain.
Also, many autistic people have described parents as their “safe space” to let out emotions, especially after pretending to be neurotypical and being in sensory distress during the school day. They know you will still be there after it all.
In 99% of situations with autistic kids, they are in distress and don’t know what else to do. They may not even have control of their impulses. They are not intentionally trying to hurt you.
To parents who want to make a post about a stressful situation like this, after a long day of parenting, please take a breath if you can, calm down, or even write in a private document first before making a post on social media.
And if you need further support, consider seeing a therapist to work through your feelings surrounding your child’s diagnosis and your expectations.
It is reasonable to be stressed from the lack of support by schools and family. Autistic adults understand that. No one’s saying that raising kids is easy, especially when parents have to work extra hard to get proper supports for their kids and may face parental blame from family or doctors.
Am I going to stop giving advice due to these phrasing issues? In most cases, of course not. But this means I have to spend more time explaining the 101 of neurodiversity, along with answering parents’ questions. A little thoughtfulness goes a long way.
Note: I appreciate all of the parents who take the advice of autistic adults and adjust their language to reflect that as well. There are many (both autistic and allistic) parents who quietly read the posts and comments in social media groups to educate themselves, and many parents who ask questions respectfully.
Because autistic adults respect your children, observing a few empathetic, compassionate rules will help you to not just change your language, but to change your perspective.
Thank you to all the parents who listen to the autistic community and are doing the best to support their autistic children.
Her blog can be found here: http://www.autisticsciencelady.wordpress.com