Young Jeremy is a wonderful young man, he loves to play in the park, to experience the input of the world around him, the sights and sounds, the feeling of air on his skin, the breeze as it rushes past his ears. The textures of the trampoline mat against his skin. The sand of the sandpit as it flows through his fingers. Jeremy has an incredible rich experience of his world, and its relation to his sensory world. Jeremy effortlessly categorises the world around him, the leaves of the trees, the tiles on the walls, the pebbles in the garden, the caterpillars and birds.
Jeremy’s ability to
make files and folders in his mind for all these categories is prodigious. He is a very capable boy in so many ways. As Jeremy walks through the world he absorbs the written words that bombard him in signs, advertisements, and the like, with such veracity his internal vocabulary is massive.
Despite this, Jeremy, is labelled in an unfair way, that assigns him one of the dreaded functioning levels, that despicable label of “Low Functioning”, all because, Jeremy is unable to speak with his mouth parts. Jeremy longs to communicate with the people around him, his mum, his dad, his sister. Unfortunately though, Jeremy’s mum and dad are 100% set on Jeremy speaking with his mouthparts. There is to be no sign language there is to be no PECS, there is to be no ACC.
While Jeremy plays happily at the park enjoying his surroundings, his mum Maria sits, thinks, watches, and cries. Maria thinks about the day she learned that Jeremy was Âûtistic. Maria cries. Maria thinks about lost dreams, maria worries about how Jeremy is different, and not typical like other kids. Maria weeps profusely and sobs out grieving ideas of the loss of a child she never had. Jeremy pauses i his play at the sound of his mothers sobs, Jeremy tries to understand why his mother is upset, Jeremy hears her talk over coffee to her friends about all the loss, Jeremy reads over Maria’s shoulder as she writes of the grief of losing the child she never had.
Jeremy wonders what it all means, how can my mum grieve the loss of me, I am here he thinks, I am not lost, or locked away I am here, I want to tell you mum of my thoughts, my feelings, my hopes and my dreams, the words are there I can see them on the surface of my mind, I just can’t get the mouth parts to obey. Please let me have something to tell you.
Please mummy, thinks Jeremy, please mummy don’t grieve for me.
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What has come above is a work of fiction. Fiction can convey truth in a powerful way. What this piece of fiction intends to portray is an unfortunate effect of the negative narrative that is prevalent about Autism and Autistic children. There is so little narrative around Âûtistic adults that it is hard to make a judgement of whether that is a negative or positive narrative or a negative narrative.
I am sure I have posted this video previously but see here again an example of the extreme negative narrative that is promoted by, what is probably the largest Autism charity in the world.
Is it any wonder then that it is a difficult task for autistic advocates and autism advocates to encourage parents of autistic children to not grieve the child they believe they have lost. To not spend time sobbing and crying for something that never existed but rather to accept, include and celebrate the child they in fact have. To do all that is possible to encourage that child to be every thing they can possibly be. To find every way they can to accommodate and support their child to make their communication accessible to them and their peers.
Regular readers will know, I am a proud autistic. I advocate for acceptance, I advocate against horrible treatments. As shown particularly in my last few posts. I am a proud autistic and I am here, alive, living, not locked up, or locked away, not missing. None of those things is true of me. Nothing of those things of true of autistics.
Autistic people are human people. Autistic people have communication. Autistic people have strengths. Autistic people have weaknesses. Just like every other group of people who live on this planet, autistics have strengths, weaknesses, skills and challenges.
I appeal to mothers, fathers, brothers and sisters, uncles and aunts, neighbours of autistic people, I appeal to you, to look not for what we lack the ability to do, but look please for what we can give to you, how we can bring you joy, how we can bring you richness to your life. Please I implore you to never think about the loss of the child that never existed. Please never go down that line.
You haven’t lost something you never had, but if you allow yourself to think that way, to act that way, to talk that way, you might end up in a situation where you do in fact lose what you do in fact have!
Please don’t grieve for me! Please.
![I am Autistic. [or] I support those who are Autistic.](https://i1.wp.com/proudautisticliving.com/wp-content/uploads/2016/08/identity-concept_f1zJLODO.jpg?resize=440%2C264)
I don’t grieve for my son’s inability to speak. He has ACC and PECS. They help him communicate his needs. He cannot type complex ideas. rpm hasn’t been the answer either. I think he would like to communicate things he cannot through PECS or ACC. He and I are happy regardless. He is a joyous person. I take from that he is content. I don’t speak for him. But I’d like people who dont know him personally not to make any assumptions about him or to speak for him as an individual, even if they share one diagnosis, autism. His experience includes the apraxia, intellectual disabilities, and epilepsy. Without experiencing those ourselves we can’t make assumptions. He is as much an individual as anyone else.