What it's like...

[Crossbreed]

All kids do dangerous things because they don't understand danger, but this is the kind of thing I have to watch for 24/7. If that wood pile was not stable it would have certainly seriously injured him or even killed him. He doesn't listen to "NO" he just covers his ears and does whatever he's obsessing over, no matter the danger. Twice in the past 2 weeks he ripped his hand out of mine and ran into the road one time and in a busy parking lot the other. With my knee still recovering, there was no way I could catch him and all I could do was literally pray that he didn't get hit. Raising a child with severe autism is not for the impatient or the faint of heart.

That is the story of my ASD2 son growing up (now 32). He still does the adult equivalent, in terms of impulsive actions with no anticipation of consequences.

What you are seeing is actually two conditions.

1. He has the base social/communication issues that are experienced across the whole spectrum. (He thinks outside of the NT box.)
2. From your description, it sounds like he lacks a healthy "executive function" [XF] and, possibly, is OCD. These are not traits of ASD1, but frequently seen in ASD2/3. They are evidence of a brain injury on-top-of ASD(1).*

While ASD1s still think outside-of-the-box, our intact XF serves as a provisional safety boundary for us. We may not care if a choice/behavior is unpopular, but we will still consider if it could injure us.

As an autistic, yourself, you may be able to connect on point #1. (I do with my ASD2/3 children.) But his behaviors that are tied to the aforementioned brain injury are going to be as foreign to you as they would be to any NT parent (because we do not share that common ground).

In our experience, we just had to be a physical barrier when necessary. Most parenting strategies expect/require the child to have a capacity for age-appropriate XF. (As an aside, our ASD3 daughter [now 25] exhibited a marginally better XF than her ASD2 brother...)

We didn't know this at the time, but finding strategies for managing children with TBIs may give you another angle to try.

*See Autlanders, Thriving Outside of the Box: Autism Subtypes...

 

[Major Tom]

That is the story of my ASD2 son growing up (now 32). He still does the adult equivalent, in terms of impulsive actions with no anticipation of consequences.

What you are seeing is actually two conditions.

1. He has the base social/communication issues that are experienced across the whole spectrum. (He thinks outside of the NT box.)
2. From your description, it sounds like he lacks a healthy "executive function" [XF] and, possibly, is OCD. These are not traits of ASD1, but frequently seen in ASD2/3. They are evidence of a brain injury on-top-of ASD(1).*

While ASD1s still think outside-of-the-box, our intact XF serves as a provisional safety boundary for us. We may not care if a choice/behavior is unpopular, but we will still consider if it could injure us.

As an autistic, yourself, you may be able to connect on point #1. (I do with my ASD2/3 children.) But his behaviors that are tied to the aforementioned brain injury are going to be as foreign to you as they would be to any NT parent (because we do not share that common ground).

In our experience, we just had to be a physical barrier when necessary. Most parenting strategies expect/require the child to have a capacity for age-appropriate XF. (As an aside, our ASD3 daughter exhibited a marginally better XF than her ASD2 brother...)

We didn't know this at the time, but finding strategies for managing children with TBIs may give you another angle to try.

*See Autlanders, Thriving Outside of the Box: Autism Subtypes...

Thanks for all the information, I will check that link out. He is diagnosed as ASD3 with ADHD and intellectual disabilities. It is quite possible he got some brain damage while he was being born, my wife had a very difficult labor and delivery. She stopped breathing several times, so that had to affect him as well.

 

[Crossbreed]

It is quite possible he got some brain damage while he was being born, my wife had a very difficult labor and delivery. She stopped breathing several times, so that had to affect him as well.

Did he have odd behaviors from the beginning, or did you see a clear regression at some point in time?

 

[Major Tom]

Did he have odd behaviors from the beginning, or did you see a clear regression at some point in time?

He was fairly normal until about a year and a half old(other than not breast feeding). Then he stopped looking when we called his name, didn't smile as much and started vocally stimming A LOT.

 

[Crossbreed]

He was fairly normal until about a year and a half old(other than not breast feeding). Then he stopped looking when we called his name, didn't smile as much and started vocally stimming A LOT.

That is when the brain damage would have taken place.

THIS POST speaks of a likely contender for that injury.

 

[Major Tom]

That is when the brain damage would have taken place.

THIS POST speaks of a likely contender for that injury.

I wonder how he could have gotten brain damaged at that age? He was never dropped or shaken or anything like that. I figured if he is brain damaged, it was because of lack of oxygen at birth.

 

[Major Tom]

That is when the brain damage would have taken place.

THIS POST speaks of a likely contender for that injury.

You know, I just remembered something. Right around that age I was standing near my open sliding door giving my boy a bottle, and then I heard a loud noise and then both of us got blasted with pesticide that the city was spraying on the trees, like literally wet and coated. I couldn't breathe. I gave him to my wife and ran out there shirtless and chased those guys spraying pesticide and nearly strangled them... I screamed every obscenity at them I could think of and they jumped in their trucks and drove away. I then Went and showered because like I said I could barely breathe. I wonder if that was the cause. We bathed him too but infants are so sensitive.

 

[Major Tom]

Here is the censored version. This song both reminds me of my son and what it takes to raise him.

 

[Crossbreed]

This song both reminds me of my son and what it takes to raise him.

Mary got pregnant from a kid named Tom that said he was in love
He said, "don't worry about a thing, baby doll I'm the man you've been dreaming of."
But three months later he say he won't date her or return her calls
And she swear, ".... if I find that man I'm cuttin' off his balls..."

(It sounds like you need to stay clear of Mary...!)

 

[Major Tom]

(It sounds like you need to stay clear of Mary...!)

No worries there, I'm already married faithfully.

 

[1LegoLover]

That's exactly what is needed for his safety and that is probably exactly would happen if you used one. Certainly dirty looks at the very least. They compromised with me by holding onto my shirt tail. I causally mentioned that once on a forum back when I was 13 and someone asked, why are they doing that to you?! I said it's so I don't wander out into traffic and get killed.

I tried leashes because I was at my wits end as a single mom with twin boys. They are 17 now and as I write this I am actually laughing.
Not on that day though, they were 3, the idea was to trick or treat just at the neighbors directly across the street & the next door neighbors to the right and left of us. (They wanted to see the boys costumes because my ex mom in law had made monkey costumes).
So they are all out in their respective driveways with they kids favorites kitkats and reeces cups.
The kids are in costume; I get them each in their harness. We start out the door and make our way down the driveway.
I think - this is pretty good - then Whamo! - they each take off in the opposite direction, get to the end of the leash, sit down and start crying.

 

[Major Tom]

I tried leashes because I was at my wits end as a single mom with twin boys. They are 17 now and as I write this I am actually laughing.
Not on that day though, they were 3, the idea was to trick or treat just at the neighbors directly across the street & the next door neighbors to the right and left of us. (They wanted to see the boys costumes because my ex mom in law had made monkey costumes).
So they are all out in their respective driveways with they kids favorites kitkats and reeces cups.
The kids are in costume; I get them each in their harness. We start out the door and make our way down the driveway.
I think - this is pretty good - then Whamo! - they each take off in the opposite direction, get to the end of the leash, sit down and start crying.

Wow, single mom with autistic twins? My hats off to you! My wife and I can barely control our one son... You must be one tough cookie.

 

[GrownupGirl]

It's good the OP isn't looking for sympathy because she's not going to get it from me. Instead I feel sorry for her son for being put in these videos without his consent just to show the world how "difficult" he is. There is a disgusting trend of parents filming their autistic children at their "worst moments" such as when they have a meltdown, making the rest of the world believe that all autistic people are like this. Meanwhile adults on the spectrum like myself either get completely ignored or people think we're better off dead for being "unproductive" and other garbage. Screw the world.

 

[Ezra]

It's good the OP isn't looking for sympathy because she's not going to get it from me. Instead I feel sorry for her son for being put in these videos without his consent just to show the world how "difficult" he is. There is a disgusting trend of parents filming their autistic children at their "worst moments" such as when they have a meltdown, making the rest of the world believe that all autistic people are like this. Meanwhile adults on the spectrum like myself either get completely ignored or people think we're better off dead for being "unproductive" and other garbage. Screw the world.

Raising a child with significant/severe autism is a hugely difficult ordeal. I say that from the perspective of being a teenager with significant/severe autism. I know the tremendous struggles my parents have gone through.

Really it is tremendous struggles that we, me and them, have gone through together. I do not think it is possible for someone who has not experienced it from either end to truly grasp what it's like.

In my opinion the OP is an outstanding father of a child with significant/severe autism. Much like my own. A lot of the progess I have made beyond what the experts said I would achieve, I owe to him. I feel that Major Tom's son is in good loving capable hands.

 

[Ella Spell]

The OP posting an example on an autism support website and engaging in meaningful dialogue about parenting is much different from people who post autistic children's meltdowns on YouTube for mass media to consume. I'm against that as well and understand how it's harmful. In contrast, The OP is a loving and dedicated autistic parent who fights diligently for his son to have respect and dignity. I don't think there is any message in his video apart from "I love my child". This is a support site and he is seeking support and encouraging other autistic parents to be proactive and protective guardians at the same time.

Three cheers to Major Tom.

Yes it's hard for autistic adults and I'm a parent of an autistic child too. I speak with support for this incredible community as well as for the rights of children to be loved and protected by their parents, like MT's son so clearly is.

 

[Juliettaa]

It's good the OP isn't looking for sympathy because she's not going to get it from me. Instead I feel sorry for her son for being put in these videos without his consent just to show the world how "difficult" he is. There is a disgusting trend of parents filming their autistic children at their "worst moments" such as when they have a meltdown, making the rest of the world believe that all autistic people are like this. Meanwhile adults on the spectrum like myself either get completely ignored or people think we're better off dead for being "unproductive" and other garbage. Screw the world.

I felt sad reading your post, that you would view the OP as one of those parents.

It's so evident from @Major Tom's posts that he loves his son deeply and he is not making videos for the entertainment of others.

 

[Major Tom]

It's good the OP isn't looking for sympathy because she's not going to get it from me. Instead I feel sorry for her son for being put in these videos without his consent just to show the world how "difficult" he is. There is a disgusting trend of parents filming their autistic children at their "worst moments" such as when they have a meltdown, making the rest of the world believe that all autistic people are like this. Meanwhile adults on the spectrum like myself either get completely ignored or people think we're better off dead for being "unproductive" and other garbage. Screw the world.

You are taking my intent on this thread completely the wrong way. I love my son more than you could ever know. I find it sad how people twist other people's words and efforts into something they are not.

 

[Major Tom]

It's good the OP isn't looking for sympathy because she's not going to get it from me. Instead I feel sorry for her son for being put in these videos without his consent just to show the world how "difficult" he is. There is a disgusting trend of parents filming their autistic children at their "worst moments" such as when they have a meltdown, making the rest of the world believe that all autistic people are like this. Meanwhile adults on the spectrum like myself either get completely ignored or people think we're better off dead for being "unproductive" and other garbage. Screw the world.

And btw I am also autistic myself.

 

[Ezra]

You are taking my intent on this thread completely the wrong way. I love my son more than you could ever know. I find it sad how people twist other people's words and efforts into something they are not.

I think GrownupGirl only saw the title and that their was a video and made a snap judgement. The fact that you were being called "she" indicates that. You are quite clearly male in the video so I doubt GG watched it. I know I have made the mistake of jumping to a wrong conclusion based on just a glance at a post, especially if I was in a bad mood at the time.

 

[Ezra]

There is of course controversy in posting videos of autistic children. Although the one posted in this thead was brief and quite innocuous in my opinion. You can't even see his face. If I did not know better I would be wondering what the big deal was because to me it just looks like a little kid playing. But I know from personal experience the whole "NO NO" routine as I constantly put myself in the danger zone.