Finding Common Ground

by Nanny Aut

This is a challenging time for the autism/autistic community – when community is needed more than ever before – we are instead seeing division – not just autistics vs. autism parents but also across the lower support / higher support divide.

I recently saw a facebook post by The Autism Dad asking how we can work against this. Now, given past postings I am not sure whether he was including the autistic community in this conversation or only speaking to the ‘Autism Parent’ community. I will give benefit of the doubt and assume he meant everyone – autistics and parents of autistics alike.

And it’s difficult – all too often it can feel like parents of autistics see adult autistics as the enemy – yet another outsider who is only there to judge and criticise.

Some of that is based in trauma – when just about everyone you turn to for support uses parent blame to deny the support you need – then you are likely to assume the same intentions when someone steps in offering new advice.

And some of it is based in differences of communication style. Which can go very, very wrong – very quickly. Especially when we are pointing out something that is harmful to us or causes us trauma.

Years ago I wrote a post for Autism Inclusivity – an autistic-led facebook group where parents look for advice from autistics. Parents had started to become really aggressive, making it feel unsafe for autistics to offer advice. And parents also felt attacked when the advice wasn’t the ‘You’re doing great, Mamma’ they were hoping for.

I recently saw it reposted – and I feel it bears reposting here, because we need to be able to work together – we are all after the same goal – a better world for autistics.

Here it is:

(NT is short for neurotypical – the majority neurotype)

“Parents – we understand your discomfort.

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 have had a lifetime of experience ‘travelling between countries’, this may be the first time that you are even aware that there are other equally valid cultures out there.

A lot of us are parents. 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 scary it is to be a parent. 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 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 you are wrong and THEY are right.

What we need you to understand:

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.

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. We have had a lifetime of experience of being on the sharp end 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.

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.

Being scared is valid, parenting is scary. Getting things wrong is scary. Blaming us for that fear is not. Many parents are ascribing judgement for getting things wrong where there is none. Many are assuming we are calling you abusive when we are only talking about the practice you are following as being abusive. Many are assuming 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.”

NOTE – The best advice for parents is usually found in autistic-led forums – where it is autistic culture first and foremost – but even outside these arenas, where it is majority culture first and foremost – if you encounter autistic voices – it would go a long way to establishing mutual understanding if you recognise where autistics are coming from.

Parents know their child best – how they will respond in certain situations. What they may not know is the WHY or the needs of an autistic neurology. And that is 100% not their fault – you can’t be expected to know information you haven’t yet had access to. Or realise that the information you are using is bad – when it’s paid professionals who are peddling this misinformation.

It takes the lived experience of autistics to fill in that information gap. And we are here for you – and your children – if you are willing to let us in.