I came back from the UK to Canada a few times in the past to see family and when I spent time with them … I came really close to getting them to talk back to me. My brother would always come home later and then say: “gooo gooo gaga”. I was like, “what the hell are you doing? I’m almost able to get them to repeat what I say”. He was like, “oh it’s fine, they’ll pick it up”
Years passed. I came back to move in with my brother and when the kids were 4, almost 5. Guess what? They’re not toilet trained and they have speech issues. They can say colours, numbers, and shapes and can sometimes repeat things but they have no concept of sentences and stuff. My mother’s helping them take care of the kids but she’s addicted to her phone and speaks mainly in Chinese and didn’t really understand the purpose of getting the kids to learn incrementally. Their actual mother and father just keep saying “they’ll pick it up”. My brother actually said: “oh, it’s okay, you know why I’m not worried. Grade 1 teachers can still change them”. Their mother was like: “they’re autistic! I’ll change them as long as they need!”
The fury it sent through me while I was there was insane. I’m not a parent but while I was living there, I got them connected with my behavioural therapist friend and did so many speech exercises with them. I remember specifically knowing they loved to be picked up. Every time I picked them up, I said “up” and worked all their phrases from there. It was one of the hardest thing I’ve ever had to do. Especially when their parents come home and my mother would just undo a lot of my progress because they would just do things for them instead of letting them do it themselves. Toilet training these kids was no picnic either … I had to hold one of them down onto the portable toilet thing when he was constipated to half understand the concept. Did I do anything the best way? Most certainly not. However, these two kids can talk now and they were toilet trained after a few months.
I’ve never felt so drained and so angry at my brother and his wife for being so absolutely inept.
I had a child with ASD who couldn’t draw a bath by the time they were 10. My wife and I were separated and she just coddled them. Once I realized their siblings were doing it for them, I spent 2 weekends showing them what to do and the problem was solved. Years worth of delay because they’re “special”. Still dealing with the aftermath of that attitude where just because things will be harder for them their mom didn’t even try.
Genuinely this is why it’s important to humanize autistic people. If you paint autistic people as incapable with high support needs, they won’t get the help they need to grow up. It fucking sucks, and organizations like Autism Speaks contribute to this notion of autistic people being a drag on society instead of people who just need to be taught things a little differently sometimes.
This reminds me of a story. I knew someone who worked with an autistic person, and he’d keep answering the door in his underwear. She’d say, “Hey, you need to get dressed,” and off he’d go to get dressed, but she complained that this just kept happening. So I said to her, “Did you try telling him that he should be dressed before he answers the door?” Well, no, of course she hadn’t told him that because obviously she doesn’t want him answering the door in his underwear. So I told her, “The next time this happens, tell him, ‘It’s not appropriate to answer the door in your underwear. When I’m coming over, make sure you’re dressed before you answer the door.’” And what do you know, this autistic retiree doesn’t answer the door in his underwear any more. For her, at least, which is still an improvement, and at an age where most would have given up on him learning anything new. It just needed to be presented to him in a clear, unambiguous manner and he was happy to comply.
As an autistic myself, having specifics is definitely helpful. While my masking has helped with understanding intent and all that, that is after at least 3 decades of life to pick it up.
They say parenting comes with no guidebook, and that’s true…but OTOH, maybe common sense isn’t so common either.
I’m not here to judge anyone: I have two ASD kids and am ASD myself. That shit is hard.
One of the good things I did as a parent is enrolled my kids in a year of Montessori based pre-school. They teach the kids to clean, cook, use keys, use locks, look at people when talking, put beads on a string, brush teeth and hair, make cups of tea, use scissors etc. I know Montessori is seen as a sort of hippy-dippy thing but my experience has been the exact opposite. Don’t get me wrong, I still had to take my eldest to Speech Pathology but they (the school) laid a good foundation.
One thing to mention that might help you: ASD kids have whack bodily perception. They literally have to be taught that “feeling full bladder” = “need to go pee”. It seems insane but they just don’t…notice it, until too late. The don’t understand the body sensation.
Lot’s weird little body quirks like this.
Anyway, good luck to you. I always think to myself “be kind; everyone one is fucked up one way or another”
[Long rant]
My brother has two twin autistic boys.
I came back from the UK to Canada a few times in the past to see family and when I spent time with them … I came really close to getting them to talk back to me. My brother would always come home later and then say: “gooo gooo gaga”. I was like, “what the hell are you doing? I’m almost able to get them to repeat what I say”. He was like, “oh it’s fine, they’ll pick it up”
Years passed. I came back to move in with my brother and when the kids were 4, almost 5. Guess what? They’re not toilet trained and they have speech issues. They can say colours, numbers, and shapes and can sometimes repeat things but they have no concept of sentences and stuff. My mother’s helping them take care of the kids but she’s addicted to her phone and speaks mainly in Chinese and didn’t really understand the purpose of getting the kids to learn incrementally. Their actual mother and father just keep saying “they’ll pick it up”. My brother actually said: “oh, it’s okay, you know why I’m not worried. Grade 1 teachers can still change them”. Their mother was like: “they’re autistic! I’ll change them as long as they need!”
The fury it sent through me while I was there was insane. I’m not a parent but while I was living there, I got them connected with my behavioural therapist friend and did so many speech exercises with them. I remember specifically knowing they loved to be picked up. Every time I picked them up, I said “up” and worked all their phrases from there. It was one of the hardest thing I’ve ever had to do. Especially when their parents come home and my mother would just undo a lot of my progress because they would just do things for them instead of letting them do it themselves. Toilet training these kids was no picnic either … I had to hold one of them down onto the portable toilet thing when he was constipated to half understand the concept. Did I do anything the best way? Most certainly not. However, these two kids can talk now and they were toilet trained after a few months.
I’ve never felt so drained and so angry at my brother and his wife for being so absolutely inept.
Thank you for making a part of the world at least a little bit better. Your efforts are worth it.
Honestly, thanks. I never heard my brother say that although I know he is appreciative … but like, I’ve never heard it. So thank you.
I had a child with ASD who couldn’t draw a bath by the time they were 10. My wife and I were separated and she just coddled them. Once I realized their siblings were doing it for them, I spent 2 weekends showing them what to do and the problem was solved. Years worth of delay because they’re “special”. Still dealing with the aftermath of that attitude where just because things will be harder for them their mom didn’t even try.
Genuinely this is why it’s important to humanize autistic people. If you paint autistic people as incapable with high support needs, they won’t get the help they need to grow up. It fucking sucks, and organizations like Autism Speaks contribute to this notion of autistic people being a drag on society instead of people who just need to be taught things a little differently sometimes.
Exactly so.
This reminds me of a story. I knew someone who worked with an autistic person, and he’d keep answering the door in his underwear. She’d say, “Hey, you need to get dressed,” and off he’d go to get dressed, but she complained that this just kept happening. So I said to her, “Did you try telling him that he should be dressed before he answers the door?” Well, no, of course she hadn’t told him that because obviously she doesn’t want him answering the door in his underwear. So I told her, “The next time this happens, tell him, ‘It’s not appropriate to answer the door in your underwear. When I’m coming over, make sure you’re dressed before you answer the door.’” And what do you know, this autistic retiree doesn’t answer the door in his underwear any more. For her, at least, which is still an improvement, and at an age where most would have given up on him learning anything new. It just needed to be presented to him in a clear, unambiguous manner and he was happy to comply.
As an autistic myself, having specifics is definitely helpful. While my masking has helped with understanding intent and all that, that is after at least 3 decades of life to pick it up.
They say parenting comes with no guidebook, and that’s true…but OTOH, maybe common sense isn’t so common either.
I’m not here to judge anyone: I have two ASD kids and am ASD myself. That shit is hard.
One of the good things I did as a parent is enrolled my kids in a year of Montessori based pre-school. They teach the kids to clean, cook, use keys, use locks, look at people when talking, put beads on a string, brush teeth and hair, make cups of tea, use scissors etc. I know Montessori is seen as a sort of hippy-dippy thing but my experience has been the exact opposite. Don’t get me wrong, I still had to take my eldest to Speech Pathology but they (the school) laid a good foundation.
One thing to mention that might help you: ASD kids have whack bodily perception. They literally have to be taught that “feeling full bladder” = “need to go pee”. It seems insane but they just don’t…notice it, until too late. The don’t understand the body sensation.
Lot’s weird little body quirks like this.
Anyway, good luck to you. I always think to myself “be kind; everyone one is fucked up one way or another”