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
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.
If you enjoyed this article then please subscribe and follow our Facebook page at Autistic Village.
2 thoughts on “Autism and our Family : A review”
I have not seen the promo/doco for people who are not autistic and we should all feel sorry for them having to cope with us adults who are autistic let alone them suffering by having children who are autistic as well!
A lot of people feel they have to approach my life partner to pull me back into their line, edit me, control me and put me back in my place.
Sometimes he is taken back but what they say and does not respond immediately because he is in shock or focused on something else. Bit whe he goes to say something the person has dissapeared left etc.
We were sitting in our car travelling to Melb and this woman text me telling me thank you for arranging the petition and protest and they didn’t want me helping anymore.
I told her we were in the paper again and on Facebook,
She read what I wrote and started texting me that I am ever to write her name, associate her with me anymore and that I was this big word.
I then am told by my life partner sitting next to me while we were at the petrol station that she had texted him!
Telling him on a personal level that he needed to edit me.
So I texted her telling her to pul her head in, never contact or approach me again and stay away from my husband.
She still texted him again and me.
I had to text her to cease or I was getting a restraining order on her and to watch her mouth in the community or I would sue her for slander.
She shut up.
Point is she had interpreted when my life partner said he helped me by editing what I wrote, meaning I had to reduce a letter to the editor from 2000 Word down to 500!
He told her he doesn’t edit me personally or what I write and he likes my style when it comes to the media and local council/ government etc. I am passionate and well spoken.
Even though he does not fully understand my recent diagnosis he is trying to communicate more and taking note of little gestures, sounds I make that indicate that I am struggling having discussion about certain things with him.
At the protest we held, he saw I was standing toe to toe with a male Councillor and was getting ready to step in but saw I removed myself from the heat of the discussion to calm down and came back composed.
He doesn’t fully understand but at least he is trying unlike the bloke you have talked about in this blog.
He reads as very controlling and in no way supporting his wife and therefore showing his child and wife that they are supposed inferior compared to other people he talks with who are sympathetic towards him having to cope handle his wife and child.
Our relationships break down because we have to learn to be not whomwe are but how our husband/defacto or life partner wants us to be.
They want to not have the issue of aspergers or autism or whatever.
The little white picket fence, family home, socialising with family and friends are not the dream they supposedly signed up for because of autism etc.
I did read the article in the Guardian newspaper and did know what the hell it was REALLY about except that they wanted to promote the Autism Act.
They saidninnthe article that these people worked in good jobs etc bit then they give a statistic that clarifies that the workers are not the norm of autism when it comes to employment.
Anyway, your blog is great. A reality check on flash news.
Oh look people with autism, let’s do a doco and show how hard it is for NT people, being diagnosed by NT people and boo how for the people whomhave to live with them.
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Yes, can and do feel emotions all the time.