Emma Dalmayne, badass UK activist, shares her thoughts on video.
Thank you. I empathise with every parent in such a situation, but not the direction and perspective it leads them, and only after empathy first for the vulnerable person I centre on, the #actuallyautistic individual, so overlooked, so massively overlooked, that half a life is the most many ever see because of how life tramples over them, suffocates them.
There is so much in every such parent video I have watched – for empathy, for support, for advice, for learning, for further examination, for criticism, for concern, for hope.
There are good impulses in such videos as that mother made, and deeply concerning reactions to such challenges by the same mothers, all mixed-up.
Real fears parents have
– and also fears just for themselves.
Selfless longing for their child
– and selfish longing too.
Descriptions of weighty tasks upon a parent
– and weights parents can put on their martyr selves too easily.
Wanting cure for the incurable – autism
– but also wanting help with dual diagnosis matters, those things that are not autism, not identity.
Feeling so alone
– and making autism about the non-autistic, missing another kind of deeper aloneness and abandonment that creates, for autistics.
A love that has half arrived
– and a certain blocking possessiveness.
Knowing the hard work of changing their dreams for their child
– struggling to instead see the child’s own dreams.
Wanting a child to learn
– coercing a child to behave.
Aching for normality
– not seeing that means the child before them would be no more.
A desperation that yearns for communication
– a certain desperation that leans to end one or more lives.
– yet fearing there is no better parent for your child at the same time.
Getting perspectives massively wrong
– yet coming the hard way to immense insights of beauty.
Being entitled to the point of just not seeing how autistics see things
– but also experiencing entitled looks and attitudes from those socially watching you, critically.
Sometimes listening is the minimum and the maximum another parent may feel they can do.
But for autistics, the ones dying early, the response must be to refocus on the child at risk, put at greater risk by such public displays, back to whatever is in the best interests of the child being central, never the parents.