I interact with a lot of parents of disabled children, in a variety of settings. I think the most common question I am asked is approximately "so you have this same disability as my kid, what does my kid need?"
Why don't you ask them?
I don't know what your kid needs. I am glad! So glad you are asking me, looking for adults like me, who have similar disabilities to your child, to learn from. I think that can help so much with learning. But I don't know. I don't know the things that your child loves, the passions your child has, the thoughts your child thinks. I can't know them. I'm not your child.
I can give advice. I can tell you We Are Like Your Child. I can tell you patterns exist, and that you should pay attention to patterns. I can talk to you. I can tell you things to read. I can help you find ways to learn how to listen to your child, and help you find ways to communicate with your child.
But I am not your child, and I cannot know what your child is thinking.
And similarly, you are not your child, and you cannot know what your child is thinking. You cannot know what your child can understand. Have you asked? These questions you are bringing to me, have you brought them to your child, and heard their thoughts, instead of just hearing mine, as useful as hearing the thoughts of a disabled adult is? Because the decisions of your child are what matter here. Your child has autonomy. Your child needs autonomy.
Sometimes, that's the things I need to say, is your child is a child and that means your child will grow up. Sometimes that's the things I need to say, is that you are being told disability is scary, and not, look, your child is a person we need the ability to make decisions over what we want to do, how we want to do it. We need to be able to rebel. We need to be able to enjoy things.
Sometimes that's the things I need to say, is simply. Have you asked? Because of being told, over and over, that you need to turn to professionals, and eventually that meaning you are learning you can ask me instead. But not realizing you can simply ask your child, when it's your child's life that you are controlling.
So have you?
Have you asked? Why don't you?
"But they don't understand"
You. Don't. Know.
You don't know what your child is thinking. You don't know what your child knows. You don't know what your child can do and what your child wants to do and what your child has never been given a way to do, because of people never saying it is available, and what people have been making therapy therapy therapy therapy and never letting there be a way to live instead of try to have us get fixed. You don't know.
Do you know they understand? No. Do you know they don't? No. You have absolutely no reason to know they don't. So find a way that communicates with them. Pay attention. Provide options. Try things.
Do they need more time to process? Do they need pictures? Do they need things provided in multiple ways at once? Do they need reduction of sensory input? Do they need things the same, or different, or anything, when being asked questions? How works? I know what works for me, I don't know what works for others. But assuming it works for you, doesn't mean it works for your child, and because what works for you doesn't work for your child, doesn't mean your child doesn't understand. It means that particular option doesn't work.
Or you might tell me they can't answer you. But answering doesn't need to be in words.
Have you provided any sort of AAC system that isn't their body language anyways though? Have you looked into what works, and given time to learn, and treated it as communication and not as behavior to be learned?
Have you recognized body language as communication?
You're telling me echolalia and stims aren't communication. Bah. Are you paying attention? Sure, communication is multi-level and not always direct and when you're expecting the words to mean what they say, you aren't getting that. But are you paying attention to when they're said, why they're said, how they're said? Are you paying attention?
Are you listening to the communication that is your child's instead of expecting your child to match your communication to make it easier for you?
You ask me, what you need to do for your child, but are you asking your child, are you asking your child in your child's language, are you listening to your child's language in response, are you realizing not everyone needs to say your language always, in the first place?
I can help.
You should be asking questions. Your child should meet us. Your should read things written. Things by disabled adults are so so helpful, and you, yes you, need autistic friends. But your child needs asked too.
Ask. Listen.
To us. And to your child.