Image by Gerd Altmann from Pixabay
by Nanny Aut
When someone is struggling, you often hear ‘Why didn’t they just ask for help?’. And it’s often just not that easy. Impossible to do, even.
I understand why people don’t want to offer without being asked. To me it feels intrusive, even a little invalidating of the other person, suggesting they can’t cope on their own. It can often feel like you’re saying ‘I’m better than you, let me do that for you.’ And a lot of that has come from messages I’ve absorbed over the years. That as human beings we’re meant to be independent, to need support from no one. That being a ‘burden’ on others is a massive crime.
Those messages are also one of the key reasons that it can feel impossible to ask for help. Asking for help, with those kind of messages sloshing around your head, tell you that you have failed. You are less than. You are a nuisance. An obligation. And however much people reassure you that that isn’t true, they WANT to help, your brain tells you that they’re acting out of pity – lying out of a need to be kind.
It’s not the ONLY reason though.
Communication Differences
Being autistic with communication differences also plays a part. For me, I often struggle to:-
- Identify what help I need.
- Articulate it in a way that others clearly understand.
- Couch it in language that doesn’t sound like an order or demand but is still clear and unambiguous.
The effort to get all of that right and the frustration when it, regularly, goes wrong, is enough to deter me from trying in the first place.
Loss of Autonomy
Asking for help can also feel extremely unsafe. All too often, asking for help is seen as being the same as yielding autonomy. Once you have asked for help, the power can end up handed to the helper who then helps you in the way THEY see fit. Clearly YOU don’t know best about what you need – because if you did you wouldn’t be asking for help.
And that isn’t ok. Even in situations where I lose my power to speak – no one else has the right to be my voice – to speak for me. Not unless they are using the specific scripts I have given them beforehand. Even people who know me really well can get it badly wrong because, with all their best intentions they are speaking from THEIR experience not MINE.
You may THINK you know what will be most helpful in a specific situation, you may even have seen it help others before but MY experience isn’t the same. And because you haven’t lived my experience, your decisions about what will help me best will always be lacking critical information.
Unless there is dialogue where I maintain the autonomy of the final say, it’s all too easy for someone with the best of intentions to get it horribly wrong and make the situation worse.
And that is before you get to the bad faith actors. Who offer help as a power play, specifically to find your weak spots, to learn where they can cause the most harm the most efficiently – all the while appearing ‘supportive’ to the outside world. And if you protest that it isn’t helping – you are labelled as ungrateful and difficult. Challenging. Resistant. Unwilling to change.
Every autistic I know has had that happen more than once in their life. All with negative consequences of varying degree. For me, the worst was being ‘supported’ to the brink of a permanent exit.
Those negative experiences stick with you and that feeling of powerlessness and the fear attached to needing to trust others can be paralysing.
Rejection Sensitive Dysphoria (RSD)
Rejection Sensitive Dysphoria (RSD) can also play a huge part for many of us. The fear that even if we do ask for help, we’re going to get turned down, the fear that we’re not worth help. Or that even if they DO accept, they now think less of us and are going to avoid us in the future in case we ask again.
In the past, I used to keep a mental ledger in my head – noting every time I helped others as a sort of ticket system. I helped you move house, so I can ask for your help when I move house. Don’t get me wrong, I was happy to help, and like being useful and needed. It just gave me permission to ask for help in return. Otherwise, why on earth would ANYONE want to help a failure like me?
And that ledger didn’t work. For different reasons with different people. Some because they were simply users – out for the take. Some because of NT hierarchy mindset – to them I was the subservient helper, so could never be the helpee. Most who didn’t help though, COULDN’T help, they, like many of us autistics were already operating on negative capacity and had nothing left in the tank.
And that failure of the ledger only reinforced the RSD. I didn’t deserve help. Others did, I didn’t.
And the terror of that rejection builds. It can become overwhelming.
One core memory is when I had to ask a parent to drive me into the hospital for an operation. I scripted for over a week. I picked up the phone multiple times before finally ringing. I was halfway into Flood (uncontrollable crying) before I got the request out. And when they started to say it would be difficult for them (social engagement) I bottled completely – said it would be fine and I would figure something out and hung up. And then went into full meltdown because there was no other way out. I would have to cancel my cancer operation entirely. They were my last resort after I had explored every other option.
Luckily, later on, they had a chance to think about it, and they realised that possibly a daughter going in to have a tumour removed was a higher priority than meeting up with friends and called to agree.
I still wake up at nights replaying that first conversation, reliving the terror and panic. For them, I doubt it even registered.
Perseveration on Failure or Rejection
Replays are another barrier to asking for help when you’re autistic. Perseveration is something that many of us experience. Looping endlessly on things that didn’t go well. Looking for a solution that can never be found – Problem Solving Mode – Eternity Edition.
This means we don’t just experience the negative feelings in the moment it happens, but we experience them over and over again, just as fresh as the first time. Which reinforces the RSD, and the trauma making us even more averse.
There are always people out there who are genuinely wanting to help. Waiting to be asked and wondering what’s wrong with them that no one asks them (myself included).
And the answer may genuinely be ‘There is nothing wrong with you.’ You are a safe person who gives autonomy to the person you’re helping, who provides genuine help when the opportunity arises.
It may simply be that the barriers to asking for help are insurmountable for the person needing support.
Autistic Village 