Autism labels are controversial.
The “high functioning” label leads to ignoring people’s difficulties, and the “low functioning” label has been used to devalue people’s abilities.
Many people grew up unaware of autism, aware that they were “weird” and “different”, and are only just now discovering that they are autistic. The diagnosis comes with grief, and also a huge sense of relief that you can stop pretending that you were built the same as “everyone else”.
Other people, grew up with autism, and were very aware of it. They were put in special education, often with the goal of helping them to overcome what others saw as their disability and their differences. They could be the victims of ABA-style training, designed with intentions to help, but often teaching them to value the appearance of conformity, over their internal needs for self-regulation.
The two communities are seen by the outside as divided. One side, able to speak and support themselves and maybe even work, are seen as barely disabled, maybe only sensitive, or still “weird”, despite the existence of the diagnosis. The other side, less able to speak, supported by care-workers and with little chance of genuine work, are seen as de-humanised, low intelligence, and treated as voiceless.
When you advocate for neurodiversity, you’re told you can’t relate to the poor voiceless souls who “suffer” from autism. This can happen to activists who are non-verbal, but type fluently on the internet, free from the other constrains of socialisation.
The obvious answer is; but who else can relate? Who else can relate than people who grew up with the weight of “autism” like a yoke around their neck, only to become adults who succeed according to their own criteria? We know how easy it is to silence an autistic voice, and how important it is to start listening instead.
We don’t like to use the labels of high functioning or low functioning, but the divide of those of us who are able to mask, advocate, and occasionally get by unnoticed and those of us who are never allowed to forget that the world sees them as disabled, and unable to have a voice.
To acknowledge that people who are unable to speak still have voices is vital, but it’s pushed against by certain advocates, carers and business owners with a vested interest in controlling the narrative of a dependent disability.
People still push for a “cure” instead of learning about how autistic brains work, and how to communicate better, and how to help people to thrive as themselves.
This is despite the fact that autism is developmental condition, not a disease. True awareness, accessibility and acceptance vastly improves people’s happiness, confidence and abilities.
The comparison of those who look like they are coping (however narrowly, and with however much hidden work and support behind the scenes that might be) and those who are forbidden by the perceptions of others from the dignity of independence and self-determination, is not fair to anyone.
It’s like the difference between someone swimming in deep water, and someone being pushed under a wave. They are both in the water and unable to control it, either precarious or actively being pushed under by it.
The swimmer might have stronger arms, but it’s taking a lot more concentration and energy than the person sitting on the beach or in the boat, just to keep their head above water.
The person under the waves might be swimming just as hard, but because they are in rougher waters, their efforts aren’t seen and they have even less chance to succeed.
The point is that it’s the water we need to look at changing, not the people’s swimming skills.
We need to accept that a flotation device might be helpful. We need to help calm the seas of low expectations and victim narratives, to give dignity to people who are currently judged too disabled to have a meaningful voice.
And we need to continue to work on recognizing the kinship of those who are all out at sea together, even when we have different amounts of salt water in the way.
I think that would be good for all of us. ❤
Thank you for reading, I genuinely appreciate it.
I don’t always have the right words to say things first time, this post was difficult to write. I’d love to know what you think, if I’ve struck the balance of honesty and fairness that I was trying to strike, or if I’ve inadvertently caused offense and need to change anything.
I’m really pleased with my water metaphor, and I’m hoping to expand on it some time soon, so please watch this place and consider subscribing if you liked it too! I post every week now, and have done for several months 🙂