“Parents of autistic kids don’t listen to the perspective of autistic adults” is a common complaint I see on Twitter. Apparently, parents tend to say Terrible Things like “I know my child best” and “your autism is different to their autism”. And then autistic people get upset because, technically, there is something about the lived experience of being autistic that a neurotypical parent won’t understand because they are not autistic. And every autistic person knows that what autism looks like can change hugely across the lifespan. Heck, it can change hugely across a month. And autistic people can get really very hung up on these two points because we do so love a technicality (I am speaking in generalisations here) and there’s that not being listened to thing that can be hard.
The problem is that Autistic and NotAutistic are two different languages, two different cultures, two different sets of social norms. And we can easily forget how different they are, because they exist in parallel in the same spaces and use the same sounds. It feels like they’re not that different. It feels like they shouldn’t be that different. So Autistic people respond to NotAutistic as though they are speaking Autistic and then get upset when the NotAutistic people are upset that they didn’t respond in NotAutistic. (I think the technical term for this is The Double Empathy Problem.)
Add to that, if the autistic person has been through ABA, they will have been traumatised by that and will be absolutely fearful that this parent is going to, even with the best of intentions, allow something like that to happen to their child. So their reaction will be even stronger, and thus more off-putting to NotAutistic parent. (Remember, NotAutistic parent won’t know what Autistic concern looks like.)
There’s also a confounding factor known as AutismMums(TM) – parents (and it is generally the mothers from 6 years of observation) for whom their child’s autism is their entire identity. The parent sees themselves a martyr, a victim of their child’s autism, and Nobody Knows What They’re Going Through (except we do, because they post it all over social media without concern for the child’s privacy or dignity). They want their child to be “Normal” and they want everyone to feel sorry for them. What they do not want is some autistic adult suggesting ways to help their child be their best autistic self. This is a confounding factor because the chances are, an autistic person won’t be able to tell whether or not any given parent asking for help is an AutismMum(TM).
So we have two sides both feeling really defensive, using the same words to mean different things, trying to have a conversation about things that evoke some of their deepest fears. (If an autistic kid is having daily meltdowns, it’s because they are totally overwhelmed and/or don’t have the skills to adequately communicate their needs in a non meltdown way. The natural conclusion for the parent is that they have utterly failed their child. Which is not true. They’re reaching out for help and trying to listen, which is the opposite of failure. AutismMums(TM) excepted.) I mean, it’s no wonder Autistic Twitter has some kind of communal megameltdown about this on a regular basis.
What’s not okay is to call parents oppressors, to harass and troll autistic advocates that suggest that there may be some middle ground, or to claim that we as autistic people know the autistic kids better than their own parents (and yes, I have read all these things). We don’t live in their houses; we don’t know their favourite colour, or what they sound like when they gurgle with delight at the water coming out the tap; we haven’t watched in fear as they hurl the trampoline across the living room or launched themselves at us with arms and legs flailing. We don’t have to hold our breath each night hoping that they will eat enough calories. Yes, we know what it is like to feel and do those things, but we don’t know what it is like to observe helplessly and without the inuitive understanding that is lived experience. It’s that tricky Double Empathy Problem all over again.
The Autistic response to “my kid is having meltdowns when I try to make them do XYZ, help!” is going to be a breakdown of the sensory challenges with XYZ and an explanation that the meltdowns are because the child is in pain or totally overwhelmed and your best solution is to stop attempting XYZ until you have worked out what the issue is. And here are some totally weird left field ideas that will potentially address the issue. The fact that these suggestions indicate that the child may have been suffering for years while the parent forced compliance, and the associated feelings of guilt and failure, wouldn’t really come into the conversation. Nor would the fact that the proposed solution makes your family look even more odd than they did before. (That’s not to say that autistic people don’t feel guilt about these sorts or things – we do. We just address it and resolve it differently.)
The NotAutistic response to that sort of query is to firstly validate the parent’s feelings. (Cue Autistic “what? But it is the kid that’s struggling!”) To listen and say that it’s soooo hard. To make a joke about having wine. To either offer solutions that will enforce compliance or to say they have absolutely no idea what to do. The entire conversation would happen from the parental perspective – what do I have to do to get this kid to do what I want them to do? There would be lots of assurances that the parent is not doing anything wrong. (Cue Autistic: “But if the kid is having meltdowns every single time then clearly the parent is doing something wrong!”) NotAutistic “you are doing nothing wrong” and Autistic “you are doing nothing wrong” can have very different meanings. As I previously said, same sounds, different culture.
This doesn’t mean that Autistic people can’t communicate with NotAutistic. Rather, it means that we need to sort of approximate NotAutistic customs when we do so. Almost every autistic person I know hates the Shit Sandwich technique (say something nice, say the hard thing, say something nice) but it’s a thing because it works (for NotAutistic people, at least). This doesn’t mean we have to lie or make things up. We just need to remember that these parents are really stressed, and so if we are to help them, and their kids, we need to do our very best to be Not Offended. (Which is tricky.) We need to be kind and Autistic. The two are not mutually exclusive.
I like a list, so here’s some practical suggestions for how a conversation can go
– if you are a NotAutistic person asking an Autistic person for help, expect the answers to come as practical advice rather than emotional support.
– if you are Autistic and a NotAutistic asks for help, check whether they are venting, looking for emotional support, theoretical knowledge or practical suggestions. You might suggest some resources if they are looking for theoretical knowledge (especially if it’s something like ABA). Do not expect them to actually access the resources you give them. (This is to manage your own wellbeing- it’s not a reflection on NotAutistic people.)
– if you ask an Autistic person for help, listen. Respect that they are speaking from a different place to you, that their ideas around social norms are different. They will most likely take your request very seriously and will want to do everything they can to help. They will most likely tell you too much, and things that will hurt, and that you would deem socially inappropriate. Compared to NotAutistic, we definitely overshare! Whatever is said is done because we think we are answering your question.
– if you’re NotAutistic, try to make your question really really really specific.
– if you are Autistic, try to remember to keep your answer shorter than normal. Also start by reminding the parent that you know they love their kid and that they have been trying their hardest. Reflect on the fact that this parenting malarkey is much harder than they would have expected. DO NOT SAY that it is probably harder for the kid. This may be true, but it is not helpful.
– Try to remember that you both have the child’s best interests at heart. It’s okay to stop and revisit a conversation.
– Autistic people don’t do tone. Or if we do, it’s blunt and factual. I don’t think there’s a way around this.
– when talking about emotive topics, the social skills of both Autistic and NotAutistic people suffer. This is why slow and short conversations are better. It gives you time to decompress.
– if you realise you are dealing with an AutismMum(TM) disengage.
– similarly, if you find yourself as a NotAutistic dealing with someone who is telling you things like “your kid is better off without you” or similar, disengage. They’re the autistic equivalent of AutismMums and they do not speak for the Autistic community in general.
– be patient and be kind. To yourselves and to each other.