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MCee

Member
Oct 28, 2017
2,452
Bay Area
That article is so far outside my family's experience with ABA therapy that I don't even know how to begin to respond. It's been an incredibly positive experience for my kid.

I guess the bottom line is, get information from medical professionals and don't believe everything you read on the internet.

Yeah, pretty disrespectful to the kids who really benefit from it and to the people working hard to help kids develop skills in ways they wouldn't just going through life as if they didn't have any deficits.
 

Murfield

Member
Oct 27, 2017
1,425
Maybe part of the problem is shaking initial impressions?

Are there activities outside school he can do that involve other children not from school?

Once people (particularly children) make their mind up about you, they often don't care how much progress you make.
 

nopressure

Member
Oct 28, 2017
1,414
I work with a behavioural analyst and that's not at all my experience of the therapy. The child's feelings and emotions are absolutely considered for interventions and uses positive reinforcement, not negative punishments.

Many of her cases are children that are non verbal or have severe challenging behaviours - a behavioural approach completely makes sense for these children. E.g. She had a child that kept pulling out his PEG tube (which he needs to live) and required unpleasant repeat procedures. It's a life changing intervention for some families.
 

jb1234

Very low key
Member
Oct 25, 2017
7,232
Havent read every post here but there doesn't seem to be a ton from people who have autism and grew up with it. OP that section that talked about him screaming about sonic hit home so hard. Thats still me at 29, tho mostly just ranting to my wife now haha.

Now my experience may very well be different from someone else(because remember its a spectrum, with a wide varity of how it can effect people_ but for me school was horrible. I had usually 1-3 friends i could talk to in my grade but that was about it, the rest either ignored me or picked on me. So after awhile i just became the quite kid in class where everyone would just be like"Oh HE doesn't talk to people, he prefers to draw" Now I was at least lucky the trailer park i grew up in had other nice kids who kinda got used to my quirks so outside of school I was able to be pretty normal.

Growing up it does get easier to manager, ive seen a few posts say people grow out of their quirks(or something along those lines) and thats not quite true. Its more you learn how to mask yourself around other people so you appear normal. I feel lucky ive got a wife who loves me and a job that allows me to sit in front of a desk and create all day (game industry artist) but im an adult who at a surface level looks functional when in reality i still have all those same quirks i had as a kid, I just got better at hiding them and THAT in of it self is so tiring. Because then people who dont know expect you to react to things normally but then BAM something catches me off guard and now im having a sensory overload in a meeting with 30 people and i have to get out. Those moments suck because its better to lie about something like a bathroom emergency than to explane to people that noise was too loud and i need to get away

Yeah, this sums up my experience with adult autism (Aspergers was the original diagnosis) very well. There's certain elements I'm able to hide but I get easily overwhelmed in unfamiliar circumstances/social situations and can melt down. As you said, it's also exhausting trying to act "normal" in front of people who expect it. I have difficulty making eye contact (have to force it) and a bunch of physical tics. I found it much easier to make online friends although I do have several IRL ones (my best one moved away, unfortunately).
 

LL_Decitrig

User-Requested Ban
Banned
Oct 27, 2017
10,334
Sunderland
He is an adult, he's 30 now. On one hand, it's terrifying for me. I didn't grow up with an autistic family member like my wife, and although he's high-functioning, he's still very much like a little kid. He gets overwhelmed with his emotions. But I've seen him get violent, and the general consensus is that when he makes a promise he will keep it, even if it takes him years to act on it. But no one in his family is going to contact the authorities about it. If I did that, I think it would destroy my marriage. My wife adores her brother, even with the threat. She grew up with him like this her entire life, and she's seen how unfair life has been to him. She's got a huge capacity to love and forgive, and to her, he will always be her little brother that just wants to have a normal life.

Best I can do is put my foot down and say that once she's pregnant, he can't be a part of our life anymore - until he decides to rescind his threat of violence. But since he's freezing us out already, there's not really much else for us to do except be heartbroken that this is what his situation is like.

I'm glad you wouldn't do anything without consulting your wife about her extremely vulnerable brother. If you're going to be raising kids, you'll both need to rely on one another, basically forever, with all the important decisions. This is one of the first decisions in that process, and it sounds like your instincts are sound.

And yes, of course you must try to mitigate the potential harm to your future family in the light of this threat. That's the right way to express your concerns and I know you'll have to trust your wife's view on this. Try to let her instincts guide you, but don't be scared to express concerns on the equally vulnerable future family.

I'm British and a lot of the time I have to assume that people I'm talking to here live in countries where the police are not friendly, well trained people wearing boots and a stab vest with a pair of handcuffs and, sometimes, a little can of pepper spray. Life must be so much worse if you have to deal with heavily armed psychopaths with a badge.
 
Oct 25, 2017
8,354
Gordita Beach
Eventually you learn to act a certain way by watching others and emulating them. Brings its own issues, but I don't feel as weird. Sucks that I have to plan everything out in my head from responses to movements but oh well.

It will likely get better for your kid, probably introduce some other problems but that's life I guess
 
Sep 12, 2018
656
User Banned (3 Days) - Inappropriate Driveby
Its hard to put into words how painful it is to watch my kid at the park trying to interact with other kids and their parents. It's taken years to get him to be able to be social, and to use words, and get the courage to go up to other children to ask them to play. However, he still has problems with boundaries and personal spaces, so if he likes someone he'll tell them that he loves them and give them a hug. He'll want to play chase when other kids have moved on to other games. He'll be excited to tell them about what is on his mind, but he hasn't given them any context of why he's yelling out about Sonic, so they don't know that he's wanting to reenact Smash Bros battles. So they distance themselves from him.

My friends' kids don't say it, but they don't want anything to do with him. If they come over to swim, they will swim by themselves, leaving him to play alone. I won't talk about birthday parties.

How do I deal with this? How do I keep my child from turning into a sad and bitter person?

Joke thread?
 

Nothing Loud

Literally Cinderella
Member
Oct 25, 2017
9,987
I'm in a similar position, and I feel like it is ruining my 6 yr old boys life, and the lives of those around him. We're in the middle of a diagnosis. He probably has P.D.A - Pathological Demand Avoidance, which means that he won't do a fucking thing he's asked. Just getting him to brush his teeth or get dressed is a daily battle. He is constantly being excluded from school. They're talking about referring him to a special school (P.R.U.). He's unlikely to ever be able to get a proper education or a hold down a job. My younger daughter seems to be "normal" but she's copying him. It is literally getting harder and harder to love my own child because his behaviour can be so bad, and it's getting worse. 2 years ago he seemed to be "a bit of a handful" and now he's basically disabled. He has attacked teachers and smashed up school property. He literally dismantles things in his room. My wife is tired and imprisoned in the house. I am considering quitting my well paid job to live 200 miles away where we have family, but I literally would have to leave the industry I currently work in and more than half my wage. I've lost friends because we never get to socialise, Im drinking more than I should be and my whole life is just to deal with this now until I'm dead.

So yeah, autism is a bitch.

I'm sorry to hear that. Caregiving is exhausting. What country are you in? Are you seeking disability resources and government resources? Have you thought of paying for in-home therapists and caregivers with your well-paid job to take over the caregiving part time so you and your wife can focus on your own self-care more often? You and your wife need your own time for health and boundaries, so if you can find a nanny or therapist that is willing to put up with the child for even a few hours a week, that can make a major difference in your stress.

Acceptance and commitment therapy might help you. A lot of distress comes from psychological inflexibility where people become miserable by focusing disproportionately on how things "should be," injustices, etc. in other words, it's possible that that may be giving you some stress. This therapy helps you work on accepting reality as it is and focusing on addressing your values in life instead.

In your country, does your child have the right to special education resources? In USA a lot has to be ruled out and tried before a kid gets sent to an alternative school. Does the school he goes to have proper resources for his learning disabilities?

Please don't be offended. These are just some ideas that came to mind
 
Last edited:

Deleted member 44129

User requested account closure
Banned
May 29, 2018
7,690
I'm sorry to hear that. Caregiving is exhausting. What country are you in? Are you seeking disability resources and government resources? Have you thought of paying for in-home therapists and caregivers with your well-paid job to take over the caregiving part time so you and your wife can focus on your own self-care more often? You and your wife need your own time for health and boundaries, so if you can find a nanny or therapist that is willing to put up with the child for even a few hours a week, that can make a major difference in your stress.

Acceptance and commitment therapy might help you. A lot of distress comes from psychological inflexibility where people become miserable by focusing disproportionately on how things "should be," injustices, etc. in other words, it's possible that that may be giving you some stress. This therapy helps you work on accepting reality as it is and focusing on addressing your values in life instead.

In your country, does your child have the right to special education resources? In USA a lot has to be ruled out and tried before a kid gets sent to an alternative school. Does the school he goes to have proper resources for his learning disabilities?

Please don't be offended. These are just some ideas that came to mind
Not offended. UK. We're in the process of getting a final diagnosis, but it's pretty clear at this stage that something is very wrong. I'm reading back what I wrote and it seems selfish that I talk about my own feelings a lot, but this situation really is crushing all the joy out of our lives. As soon as we get the final diagnosis, we're looking at funding for home schooling which might be the best answer for us. He's such a smart kid WHEN IT SUITS HIM, but the manner of his condition, which means that he has serious probems doing most things that are required of him is so frustrating. It's like he has this condition that means he can't help but act like a little shit, but even though he can't help it, the bottom line is he still acts like a little shit. He comes across as obnoxious, which is a terrible reality. We're about to get the help we need hopefully, but in the UK the Conservative party have stripped a lot of funding from the services we need. We're getting pretty desperate. Hopefully once the diagnosis is pinned down, we'll have a better idea of how to handle this.
 

///PATRIOT

Banned
Oct 27, 2017
524
I'm in a similar position, and I feel like it is ruining my 6 yr old boys life, and the lives of those around him. We're in the middle of a diagnosis. He probably has P.D.A - Pathological Demand Avoidance, which means that he won't do a fucking thing he's asked. Just getting him to brush his teeth or get dressed is a daily battle. He is constantly being excluded from school. They're talking about referring him to a special school (P.R.U.). He's unlikely to ever be able to get a proper education or a hold down a job. My younger daughter seems to be "normal" but she's copying him. It is literally getting harder and harder to love my own child because his behaviour can be so bad, and it's getting worse. 2 years ago he seemed to be "a bit of a handful" and now he's basically disabled. He has attacked teachers and smashed up school property. He literally dismantles things in his room. My wife is tired and imprisoned in the house. I am considering quitting my well paid job to live 200 miles away where we have family, but I literally would have to leave the industry I currently work in and more than half my wage. I've lost friends because we never get to socialise, Im drinking more than I should be and my whole life is just to deal with this now until I'm dead.

So yeah, autism is a bitch.
Hugs to you mate.
 

aett

Member
Oct 27, 2017
2,027
Northern California
My eight year old son is also autistic and has been in various therapies since he was two. He tends to either ignore kids at the playground or get really close and talk about whatever random facts he's currently interested in. His classmates, especially the girls, seem to like him a lot and try to help him, but then there are times when he has a meltdown and everyone looks really uncomfortable. (Note: he was recently diagnosed with ADHD and recently started taking medication for that as well as a small dose of medication to help with his explosive meltdowns.)

While I'm glad that classmates are generally nice to him, it's worth noting that he didn't receive a single birthday invitation during the entire second grade school year. That sort of thing makes me sad, but those parties are also really stressful for me as his parent.
 

Deleted member 44129

User requested account closure
Banned
May 29, 2018
7,690
Thank you

While I'm glad that classmates are generally nice to him, it's worth noting that he didn't receive a single birthday invitation during the entire second grade school year. That sort of thing makes me sad, but those parties are also really stressful for me as his parent.
Yeah, parties are hard. That's been a big one for us. He tends to be happy at them, but the other kids are like "Why is this kid under the table?", "Why wont he play the games normally?
 

Pooh

Member
Oct 25, 2017
8,849
The Hundred Acre Wood
Kudos to all you parents trying to do your best with your child. I work in an environment with a lot of spectrum kids (as well as behavioral issues and things) and nothing breaks my heart more than seeing a kid with parents that are simply not equipped either intellectually or emotionally to help their special needs kid. I've learned so much from co-workers about the educational system and how much it fails these kids as well. I can't imagine how hard it is day-to-day. You are doing heroic work.
 

///PATRIOT

Banned
Oct 27, 2017
524
This thread teaches me that if I ever have a child, teach him humbleness, respect and understanding for other children with this condition.
 

Zedelima

▲ Legend ▲
Member
Oct 25, 2017
7,720
He is an adult, he's 30 now. On one hand, it's terrifying for me. I didn't grow up with an autistic family member like my wife, and although he's high-functioning, he's still very much like a little kid. He gets overwhelmed with his emotions. But I've seen him get violent, and the general consensus is that when he makes a promise he will keep it, even if it takes him years to act on it. But no one in his family is going to contact the authorities about it. If I did that, I think it would destroy my marriage. My wife adores her brother, even with the threat. She grew up with him like this her entire life, and she's seen how unfair life has been to him. She's got a huge capacity to love and forgive, and to her, he will always be her little brother that just wants to have a normal life.

Best I can do is put my foot down and say that once she's pregnant, he can't be a part of our life anymore - until he decides to rescind his threat of violence. But since he's freezing us out already, there's not really much else for us to do except be heartbroken that this is what his situation is like.



No worries! It is really heartbreaking. He does see a therapist, and he has for awhile now, but I'm not privy to how that's working for him.
I dont want to scary you, but you should be afraid

I have a cousin with similar problems, and his brother wanted a dog. He said he didn't like dogs and the brother got one anyway
He always thretened to kill the dog, but no one never took it as a truth (he always made threats, but never said in kill anything, so no one believed that he would go that far), even i didn't believed.
One day when we was alone with the dog...the neighbours called the police, what he did...i dont wanna to go into detalis. He's locked in a clinic until this day (is been 3 years) and probably will never be able to get out, even his family doesnt want to. They said that as long they can pay the clinic, he will stay there because they are terrified. Even i offered help to pay too, because he said that if he ever get out, he will kill my aunts.
 
OP
OP
Mr Jones

Mr Jones

Banned
Oct 25, 2017
2,747
Yeah, parties are hard. That's been a big one for us. He tends to be happy at them, but the other kids are like "Why is this kid under the table?", "Why wont he play the games normally?

Yup, same. My kid doesn't like a lot of people clapping, which also means he doesn't like the Happy Birthday song, because usually clapping follows it. So he gets real agitated during that. None of the birthday games really interest him, so the best birthdays are at Chucky Cheese, where he can play games, or one of those places with the big indoor hamster maze style gyms, where he can chase others.

However, he only has two kids where he gets invited to birthday parties, and one of those two basically ignores him the entire time, so there's that. :|