Autism and our Family : A review

by Nanny Aut

This article has taken a while to write – because my first response was anger and frustration so intense that I was unable to take any objective stance at all. The first impression screamed ‘Autism Mom’ vibes – where the documentary was, for the most part not about autism at all, or even Paddy’s family, but about Paddy’s feelings about autism. And those feelings weren’t positive for the main part. Only in the last few minutes does he express a begrudging recognition that this is the family he loves dearly and he wouldn’t change anything about them – even the autistic bits.

However, time and perspective – and recognising that the title isn’t accurate – has helped me take a more measured view.

If we stop taking it as a documentary about autism – which it isn’t – and start taking it as an honest discussion of a parent’s journey on discovering their child is autistic, then this documentary is pretty powerful. Because I think Paddy’s journey is a pretty fair representation of what a lot of parents experience on first being told that their child ‘has autism’.

First, there is the fear – so overwhelming in Paddy’s case that it caused severe depression and a refusal to even discuss the topic. Interestingly, the fear led Christine in a different direction – she did a very autistic thing – when anxious about something, deep dive on the facts. The more information you can gain, the more back in control you feel.

Then there is the misinformation and the poor access to valid information. Paddy was told by a professional that autistics can’t feel emotions – and will never feel love. Not only is that very much not true (thankyou Baron-Cohen for that damaging myth) but it is terrifying for a parent to hear. It is a fundamental drive for most parents to love their children and to know that their children feel loved and safe. And in Paddy’s case it was enough for him to want to ignore the fact that his children are autistic – because the belief that they would never know they were loved is so unbearable.

And it IS a common fear, because we don’t express our emotions in expected ways, our language of love can be very different and if you don’t know what you’re looking for, the signs can be missed. The insistence of playing side by side instead of together, the sharing of joy through info-dumping, the sideways glance to check you are still paying attention. And when we are non-speaking we don’t even have the words ‘I love you’ to reassure the parent.

I have lost count of the number of times I have identified the love signs for parents – signs that are there in flashing neon for an autistic but initially invisible to NTs.

All through this documentary, Paddy went to speak to ‘experts’ who were all NT and while they all had good intentions, they had, at best a partial understanding. Even the ‘great’ NT autism guru, Simon Baron-Cohen admits that he still doesn’t understand. Here is a hint for those experts – start talking to autistic adults instead of observing and assuming. Recognise that the majority of academic literature out there is severely flawed because it didn’t include authentic autistic voice – instead it is interpretation through heavy, unrecognised researcher bias. Basically poor Theory of Mind (yes, still looking at you S B-C, who because of your own poor Theory of Mind penned another destructive myth that autistics lack Theory of Mind – oh, the irony!).

When they did speak to autistics, it wasn’t to find out about the autistic experience except in the most superficial way – such as how did they feel about their diagnosis, or can autistics lead independent lives or why being late to school can make you anxious. And they were surprised and a little bit patronising about the answers. ‘You have two jobs, and a boyfriend, that’s amazing!’ to a 24 year old in supported housing. ‘But that’s a normal thing to feel!’, when told that being late makes you anxious because you are going to get into trouble. As if he was expecting some exotic, unfathomable reason. And Paddy saw the boy as a real trooper for not being bothered about his diagnosis.

‘I don’t care me – I’m living my life’ – definitely quote of the documentary.

Even stranger, Christine is only given a marginal voice. Even though she did a deep dive for information on autism and was diagnosed as autistic on the program, her opinion and her voice was very much treated as secondary. Even when she tries to explain masking, Paddy shuts her down and talks again to the ‘experts’, who do, in fairness, try to reinforce what she’s saying. This was a real shame because when she did speak, she offered genuine insight and I would love to see a documentary where Christine is the primary voice.

Paddy spent more time talking in detail with another parent about the heartbreak of having an autistic child. Their information has all come from bad sources – they were advised to hold their child in a headlock to give them a haircut! And they think the resultant fighting, struggling and biting is because the child is autistic – not because haircutting is a challenge sensory wise and can be traumatic and then your own parent traps you and tortures you without your consent. Wouldn’t you try to fight free?

Their son is a non-speaker – this would have been an excellent opportunity to educate the public about alternative forms of communication and the importance of focusing on communication instead of speech. Instead, all we hear is that they just kept hoping that eventually he would start talking, but at sixteen they’ve given up hope of that happening.

What this documentary brought home is the barriers we are facing in gaining acceptance and understanding. Even though Paddy goes ‘This is my gang, and I wouldn’t change a thing’, we feel that that is an aspiration not reality. Because he doesn’t yet see his family in all their autistic glory or understand anything about our neurology. Even Christine, his wife, feels the need to mask around him, because she has been taught from childhood that her natural way of being is unacceptable. And he still won’t tell his children they’re autistic and is even uncomfortable with Christine telling them that she is autistic. That isn’t acceptance.

There was no acknowledgement in the documentary that his fears weren’t valid and based on myths not facts. There was no attempt to develop genuine understanding of being autistic. It was all from a viewpoint of ‘How this impacts me’ and ‘How others will see my children.’ And this is an extremely common mindset, not just amongst parents who are suddenly catapulted into a world they know nothing about, but amongst the professionals and other parents they turn to for advice. And so rather than it being challenged, it’s reinforced. When there are negative behaviours, there is no hunt for the cause, only for ways to extinguish that behaviour. And unwittingly, by doing so, they harm the child they love so dearly.

It also reinforced the fact that when scared, the herd instinct becomes stronger. When feeling lost, scared and alone, you look for others who are just like you, so you can be lost and scared together. This means that rather than seeking out autistic voices who are ‘other’ and alien, they seek out other NTs, some of whom just offer bad advice because they don’t have access to better information and some who actively exploit parents’ fear and ignorance for their own commercial gain.

This is why it is so important, if you are an NT parent who has overcome their discomfort and has found the value of autistic voices, that you amplify us. When we say we are a valuable source of information, we are ignored or shouted down. However, when one of their own speaks up for us, that carries weight.

And for those who still prefer the safe echo chambers of parents who get you, and don’t make you feel bad for accidentally abusing your children or promoting harmful messages about your children, take a beat. Ask yourself whether you are in these groups to make you feel safer and more in control, or whether they actually help you understand better what is going on in your child’s head? Ask yourself, are they really ‘All About Autism’ if they actively chase off and shut down autistic voices who try speak up and offer better information? If autistic voices aren’t safe to speak up, and are actively bullied off – are these really the voices you want to listen to? Voices that will bully your children in exactly the same way and are trying to teach you how to bully your child?

Because the one thing I know is that you love your children deeply, and while part of your fear is fear of the unknown, part is fear for your children and the life they will lead. And knowing you may have made mistakes is devastating to deal with, even when you made them with the best of intentions and with what you believed was good information.

We are not there to shame you, or even judge you. We are simply there to provide better information – know better, do better. And to help you create the best life for your children. So please, give us the opportunity to do that, come talk to us. The only reason we are there, in autistic-led advice groups, is to make things better for your children than they were for us – all you have to do is listen.

For those on Facebook – here are some good autistic-led advice groups to join:

Ask Me I’m Autistic (24 hr rule)

Ask Autistic Adults – Resource for Parents of Autistics

Autism Inclusivity

I am also working on a resource list including Autistic advocates that are worth following, so keep an eye out for that in the New Year.

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