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I live with a child who spends entire days with videos on his tablet. We can't take him anywhere because if the trip differs from what we told him (trip duratio

I live with a child who spends entire days with videos on his tablet. We can't take him anywhere because if the trip differs from what we told him (trip duration or locations), we have to abort the trip to prevent a meltdown. His inflexibility means he can't hold a job or go to school or training. He can't do household chores without prompting and handholding. He will never live alone or have anything resembling a functional life. We have to make plans for how he will live after his mother and father die. We have to make space for his meltdowns that seem to come out of nowhere. His mother nearly bankrupted herself paying for private school for kids on the spectrum. His parents sued the local school system because they didn't have any teachers who had any skill with autistic children. couldn't protect him from bullying and couldn't or wouldn't follow the IEP. (Note: this is one of those events that ruin retirement plans). The state claims to have resources for my partner and her child, but when they try to get help, the state says it didn't realize she would need that much help. Then there is the never-ending struggle to get appropriate psychiatric and psychological help for him, and if you think it's hard to find a psychiatrist for ordinary mental illnesses, finding someone who knows how to deal with kids on the spectrum is almost impossible. His disability has had a negative impact on my relationship with his mother. As she has to make room for her child's emotional outbursts, I make room for my partner's angst about having a child who will never function on his own. There is a big loss of day-to-day intimacy because you never know when you will have to put up an emotional barrier against his behavior. yea, in my eyes, that counts as broken

ElijahLynn 29d ago
Thank you for sharing your lived experience, it is meaningful. I suspect some who say they like autistic traits, mean "level 1" on the ASD. May I ask if this child is level 2 or level 3 ASD? I'm imagining it is quite a different reality with level 1 vs level 2/3. https://www.autismspeaks.org/levels-of-autism https://www.autismspeaks.org/levels-of-autism
- iteria 29d ago
  My child is a level 1. It has cost me thousands and thousands of dollars to get her help because no one wants to give her resources because she's so high functioning. So high functioning! Yes my child who has random panic attacks and bolts in random directions. My kid who had a meltdown because I forgot to tell a friend that if she goes to one particular park, they have to get ice cream. My kid who is 7 and was suicidal from the social isolation that's starting up. And now that she's self-harming, now people want to give help! But not for the under lying issues. She's so high functioning (aka female and coping decently). She doesn't need pragmatic language help or social help or any of that stuff. Her spiraling is just purely chemical imbalance. Here's some pills. My kid is truly high functioning. Only professionals tag her immediately. For everyone else it takes some long term intimate interaction to realize something is wrong. Any autistic adult who says this is great is coping. I have talked to too many high functioning autistic women and there only seem to be two camp: lots of mental health issues with possible commitments or intense treatment that their parents poured so much money into. And never of those is okay or what I'd wish on a kid. I didn't even know it was possible for a 7 year old to be suicidal without a major life event and apparently this is just a thing with some high functioning autistic kids. This is not okay.
  - forestrywat 29d ago
    I'm dx'd level 2. I was diagnosed until later. It's hard to be an autistic kid, full stop. Nothing but empathy for you and your daughter. If it's any consolation, childhood years can be very tough around that age for autistic kids, but many of us find significant communities once we get online and around other autistic people our own age. Many of us go on to be very successful and happy adults once we find our niche.
- rickydroll 29d ago
  He's never been classified that way as far as I know. I would say somewhere between level 1 and level 2. He writes very well. But speaking person to person, not so good. And as I described, there's significant rigidity in his behavior. For example, when he cooks, he can't generalize. Cooking is by time, not appearance, food has to come the same packaging etc.
  - forestrywat 29d ago
    Level 1 is minimal assistance needed. Simply "requires support". Might need headphones sometimes or additional space to process feelings. This can often be just some extra coaching or training. Level 2 is "requires substantial support". This is where there are significant obvious impairments to daily life. You may not see emotional reciprocity, and peer relationships may be difficult. Sensory sensitivities may be more pronounced. Level 3 is where people may be nonverbal or not always verbal. They may need significantly different communication systems like pictures. Aggressive outbursts, repetitive and narrow interests, self harm like head banging, shutdowns or meltdowns from moderate to mild stimulae are not uncommon. They will likely need supervision and may need support to consistently complete basic daily tasks like eating, toileting, etc. I'm diagnosed level 2. What you are describing does not at all sound like level 1. Perhaps you've flipped the scale and meant somewhere between 2 and 3?
    - rickydroll 29d ago
      You're probably right. I may have flipped the scale. I see most of what you describe in level 2 combined with significant difficulty being flexible. At the same time, he writes very well expressing his emotions and insights. He can handle basic things like hygiene, laundry and food prep if it's pre-packaged but has a hard time with emptying the dishwasher. Frequently when he does things around the house, he is watching videos on his tablet in one hand and using the other hand for the task.
deleted 29d ago
[deleted]
cuttysnark 29d ago
Sounds like your relationship is suffering. If it’s as you describe, in my eyes, that counts as broken. Do you have any biological children? This child is not yours, you made that sufficiently clear.
- 999900000999 29d ago
  Not everyone should be a step parent. GP, you don’t have to do it. I’d much rather be alone forever than treat another human being as a mere obstacle to my happiness.
  - rickydroll 29d ago
    It's one of those choice not choices. I love my partner a lot. We bought a house together with a great yard with a significant fruit and veggie garden. Separating would be significantly destructive / damaging on both a personal and financial levels. That said, I entered this relationship without fully understanding the impact of an autistic child. I would not condemn anyone who refused to be in a relationship if the other person had an autistic child.
    - 999900000999 29d ago
      > I would not condemn anyone who refused to be in a relationship if the other person had an autistic child. Let me correct that for you, > I would not condemn anyone who refused to be in a relationship if the other person had a child. Being a step parent is one of the most difficult things a person can do. If you can’t or don’t want to do it that’s fine.
      - rickydroll 29d ago
        That's a good correction. Heck, leaving space for the child to grow up and have their mom when they need them and not helping if it is not asked for is difficult at times. From my admittedly limited experience, the parent and child have relationship that will keep you on the outside even if the family has made a conscious choice to include you as a step parent. I have made a conscious choice to be okay with being on the outside. My deepest relationship and commitment is with my partner. Everything else is secondary... except maybe watering the plants in the garden during a drought.

ElijahLynn 29d ago

Thank you for sharing your lived experience, it is meaningful. I suspect some who say they like autistic traits, mean "level 1" on the ASD. May I ask if this child is level 2 or level 3 ASD? I'm imagining it is quite a different reality with level 1 vs level 2/3. https://www.autismspeaks.org/levels-of-autism https://www.autismspeaks.org/levels-of-autism

iteria 29d ago
My child is a level 1. It has cost me thousands and thousands of dollars to get her help because no one wants to give her resources because she's so high functioning. So high functioning! Yes my child who has random panic attacks and bolts in random directions. My kid who had a meltdown because I forgot to tell a friend that if she goes to one particular park, they have to get ice cream. My kid who is 7 and was suicidal from the social isolation that's starting up. And now that she's self-harming, now people want to give help! But not for the under lying issues. She's so high functioning (aka female and coping decently). She doesn't need pragmatic language help or social help or any of that stuff. Her spiraling is just purely chemical imbalance. Here's some pills. My kid is truly high functioning. Only professionals tag her immediately. For everyone else it takes some long term intimate interaction to realize something is wrong. Any autistic adult who says this is great is coping. I have talked to too many high functioning autistic women and there only seem to be two camp: lots of mental health issues with possible commitments or intense treatment that their parents poured so much money into. And never of those is okay or what I'd wish on a kid. I didn't even know it was possible for a 7 year old to be suicidal without a major life event and apparently this is just a thing with some high functioning autistic kids. This is not okay.
- forestrywat 29d ago
  I'm dx'd level 2. I was diagnosed until later. It's hard to be an autistic kid, full stop. Nothing but empathy for you and your daughter. If it's any consolation, childhood years can be very tough around that age for autistic kids, but many of us find significant communities once we get online and around other autistic people our own age. Many of us go on to be very successful and happy adults once we find our niche.
rickydroll 29d ago
He's never been classified that way as far as I know. I would say somewhere between level 1 and level 2. He writes very well. But speaking person to person, not so good. And as I described, there's significant rigidity in his behavior. For example, when he cooks, he can't generalize. Cooking is by time, not appearance, food has to come the same packaging etc.
- forestrywat 29d ago
  Level 1 is minimal assistance needed. Simply "requires support". Might need headphones sometimes or additional space to process feelings. This can often be just some extra coaching or training. Level 2 is "requires substantial support". This is where there are significant obvious impairments to daily life. You may not see emotional reciprocity, and peer relationships may be difficult. Sensory sensitivities may be more pronounced. Level 3 is where people may be nonverbal or not always verbal. They may need significantly different communication systems like pictures. Aggressive outbursts, repetitive and narrow interests, self harm like head banging, shutdowns or meltdowns from moderate to mild stimulae are not uncommon. They will likely need supervision and may need support to consistently complete basic daily tasks like eating, toileting, etc. I'm diagnosed level 2. What you are describing does not at all sound like level 1. Perhaps you've flipped the scale and meant somewhere between 2 and 3?
  - rickydroll 29d ago
    You're probably right. I may have flipped the scale. I see most of what you describe in level 2 combined with significant difficulty being flexible. At the same time, he writes very well expressing his emotions and insights. He can handle basic things like hygiene, laundry and food prep if it's pre-packaged but has a hard time with emptying the dishwasher. Frequently when he does things around the house, he is watching videos on his tablet in one hand and using the other hand for the task.

deleted 29d ago

[deleted]

cuttysnark 29d ago

Sounds like your relationship is suffering. If it’s as you describe, in my eyes, that counts as broken. Do you have any biological children? This child is not yours, you made that sufficiently clear.

999900000999 29d ago
Not everyone should be a step parent. GP, you don’t have to do it. I’d much rather be alone forever than treat another human being as a mere obstacle to my happiness.
- rickydroll 29d ago
  It's one of those choice not choices. I love my partner a lot. We bought a house together with a great yard with a significant fruit and veggie garden. Separating would be significantly destructive / damaging on both a personal and financial levels. That said, I entered this relationship without fully understanding the impact of an autistic child. I would not condemn anyone who refused to be in a relationship if the other person had an autistic child.
  - 999900000999 29d ago
    > I would not condemn anyone who refused to be in a relationship if the other person had an autistic child. Let me correct that for you, > I would not condemn anyone who refused to be in a relationship if the other person had a child. Being a step parent is one of the most difficult things a person can do. If you can’t or don’t want to do it that’s fine.
    - rickydroll 29d ago
      That's a good correction. Heck, leaving space for the child to grow up and have their mom when they need them and not helping if it is not asked for is difficult at times. From my admittedly limited experience, the parent and child have relationship that will keep you on the outside even if the family has made a conscious choice to include you as a step parent. I have made a conscious choice to be okay with being on the outside. My deepest relationship and commitment is with my partner. Everything else is secondary... except maybe watering the plants in the garden during a drought.