Author: Nanny Aut
When autistics venture into autistic support forums or education forums for parents, you often hear the same refrains. We are portrayed as unempathetic, judgemental and bullying, when nothing could be farther from the truth. A lot of us are parents, and a lot of us care for the welfare of other autistic children as if they were our own. We understand how precious your children are to you. We understand how much you love them and want the best for them. It is so fundamental an understanding we don’t believe it needs to be said.
We understand how precious your children are to you. We understand how much you love them and want the best for them. It is so fundamental an understanding we don’t believe it needs to be said.
We understand much more than some people give us credit for, including the tendency of the majority (NTs) to read between the lines. What we often don’t understand, is what this invisible communication says to you, because we don’t do this. Communication can be confusing enough without adding hidden meaning. Which is why we are clean, clear and direct. We leave no space to read between.
We try to moderate this somewhat in NT-led forums, understanding they are the majority culture there. In the same way that most of us do our best to accommodate for NT needs in the wider world. However, the best education on autism that a parent can get is from autistic-led forums. We know what your child is going through, because we were those children, before we grew up and figured things out a bit. And entering those forums can be frightening for parents with little or no knowledge of autistic culture. And they shouldn’t be, because we are absolutely not there to attack you, we are there to help with effective advice and information.
And we understand where you are coming from and why you might feel like this.
We understand your discomfort in talking with autistics on our terms, in our style of communication, using our cultural references.
We understand, from a lifetime of lived experience, how uncomfortable it is to be in a space where the majority culture is not your own, where social interaction and language choices are different to your natural social style. Where you aren’t aware of the unwritten rules and are afraid of inadvertently stepping on a mine that you didn’t see. We understand that it may be a bigger shock to some, because, unlike us, who are by now, very familiar with ‘travelling between countries’, this may be the first time that you are even aware that there are other equally valid cultures out there.
We understand, from a lifetime of lived experience, how uncomfortable it is to be in a space where the majority culture is not your own, where social interaction and language choices are different to your natural social style.
We understand how scary it is to be a parent. When you have a child, no matter what their neurology, you are intensely aware that you have the most precious responsibility and getting it wrong can cause a lifetime of harm. Which is terrifying before you even add the mountain of ‘should’s and ‘ought to’s that society piles on top of us.
We understand self-doubt and not trusting your gut and letting professionals and others persuade you to do things that go against your instincts. Probably better than most given a lot of us were trained to perform as NT from an early age and ignore our gut and natural instincts, complying to others because our self-belief was deleted.
And we understand that for many of you who are autistic but yet to recognise it, that this self-doubt is every bit as strong as it is for us. Because, by being raised NT, you have internalised the same message that we did – that you are wrong and THEY are right.
What we need you to understand:
We focus on the solution. So, if a parent, in a misguided effort to help, offers harmful advice, we will be clean, clear and direct in identifying the harmful practice. We are criticising the practice, not the parent. Too many of us have suffered badly because of people doing the wrong things for the right reasons. So, we speak up to avoid it happening to the next generation. It in no way implies that we see you as abusive. Just the action you are advising. Unlike NTs we don’t do hidden messaging, so if we genuinely believed that YOU are an abuser, we would say ‘YOU are an abuser’. We don’t, we say ‘This practice is abusive’ because – this practice is abusive.
We don’t judge you for getting things wrong. Everyone gets things wrong. We do our best with the information we have and we are very aware that information about autism is in the main part very, very poor. If it wasn’t, there would be no need for education groups like this. Know better, do better, and we know most parents do this.
Everyone gets things wrong … Know better, do better
We do judge you if you refuse to listen or try to push NT beliefs and culture in an autistic space. If you ignore us or talk over us. We understand learning something you are doing is wrong is really uncomfortable, painful even, but rather than lashing out or blaming us for your discomfort, take a beat. Recognise that both of us have the same goal – the well-being of your child. Recognise that we may see things that you don’t because you don’t have the lived experience of being autistic that we do, or the lifetime of figuring out where the damage came from.
We may see things that you don’t because you don’t have the lived experience of being autistic that we do, or the lifetime of figuring out where the damage came from.
Being scared is valid, parenting is scary. Getting things wrong is scary. Blaming us for that fear is not. Many parents ascribe judgement for getting things wrong where there is none. Many assume we are calling you abusive when we are only talking about the practice you are following as being abusive. Many assume we believe you don’t love your children because we tell you that you are getting things wrong. We don’t. That is on you to take a beat and do a perspective adjustment.
We will be direct. We will be honest. Many of us will speak from a place of deep pain and/or anger. But we are here. Showing up for your children. Doing our best to guide and give clear information that will make your children’s lives better, and by extension yours. Because we care very deeply about the outcomes for children like us.
We are here. Showing up for your children. Doing our best to guide and give clear information that will make your children’s lives better, and by extension yours.
You are very much welcome and wanted here. All we ask is that you respect and accept our communication style and do not seek to change it. This is our space, we have invited you in to share our knowledge and experience, but in here we are the majority culture and you need to be the one doing the adapting to our social rules and communication styles.
So welcome to Autistic Village, welcome to our autistic world, and welcome to your learning journey.
One thought on “This is Us – A Field Guide to Listening to Autistic Advice”
Thank you for this and for sharing with us parents of autistic children your experience and offering help. I am learning to understand my 5 years old son.