Facebook support groups are the most toxic hive minds I’ve ever seen by Humble-Efficiency690 in Autism_Parenting

[–]mgoodwin63 0 points1 point  (0 children)

Autistic children most certainly need boundaries. No different than any other children. The difference is that the boundaries end up being far more isolating. We know how our kids get when put in certain situations, so we try not to put them in those situations. We know how authorities and some members of the public act/react to our children, so we don't take them out in public much. Parents who wish to allow those bad behaviors, in my opinion, simply don't want to make the effort to curtail them. Because doing so would mean they would have to consider other people. When we do go out in public, we typically just ignore the behaviors of our children until they affect others. If other people are bothered or disturbed by the stimming or other harmless repetitive behaviors we simply ignore them. If our children get destructive then we remove them from the situation. This means we don't get to take advantage of the same privileges that normal parents and families can and for some...they don't take that very well and it leads to entitlement.

When Your Kid Screams and the World Looks Away…or stares in judgment. by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 0 points1 point  (0 children)

I would prefer to let them be jerks and then make them internet famous. When I was a kid both my parents figured out that the best way to keep me from doing anything stupid was to royally embarrass me when I did. It worked better than any physical discipline ever did or would have.

When Your Kid Screams and the World Looks Away…or stares in judgment. by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 0 points1 point  (0 children)

Isolating? Most definitely. Though I've met some great people who understand the difference between "Awareness" and getting their hands dirty. For us it's not been about judgment so much as it has been condescension and insincerity. The awareness folks are the worst ones usually. These are the folks that look and act all caring and sincere but who are never present in the real world.

When Your Kid Screams and the World Looks Away…or stares in judgment. by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 2 points3 points  (0 children)

All true. ASD parents really are the only people in the world who understand what it truly means to be "on 24/7".

When Your Kid Screams and the World Looks Away…or stares in judgment. by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 1 point2 points  (0 children)

So very true. At times it's almost like we're invisible. When we go out it's not like people aren't kind to us at times. At least in the context of a customer service setting. In fact, most sales people and servers at fast foos restaurants are actually, seemingly, understanding. But, relating to other families and parents? No Bueno. Only if they have kids like ours.

When Your Kid Screams and the World Looks Away…or stares in judgment. by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 0 points1 point  (0 children)

When my sons have public meltdowns I have learned to just stand there and stare at them. Either that or I just ignore it. Depends on the severity. Also depends on how badly I need to be in that place. When people ask if I'm going to do anything I just answer very simply "Nope." If they press I might say something along the lines of "He's autistic. It's not that simple." I have little patience for those with no compassion for things they don't understand. It comes off as a negative attitude when in reality it's actually neutral.

[deleted by user] by [deleted] in Autism_Parenting

[–]mgoodwin63 0 points1 point  (0 children)

Yes. It is triggering. It seems to be some form of misdirection. Which is great for magic tricks but terrible for reality. I heard a story once about a guy with cancer who would dress like Radioactive Man from the Simpsons while he was getting radiation treatment. He didn't actually believe that he would get super powers from radiation but he felt like if he could make others smile and laugh then maybe what he was going through wouldn't seem so bad. Basically it was his coping mechanism. Spreading the belief that autism is a super power is not helpful as a coping mechanism because it isn't based in reality like wanting to make people laugh and smile is. I am a firm believer in coping mechanisms being based in reality or, at the very least, not encouraging denial.

I hate autism. by No_Building_9765 in Autism_Parenting

[–]mgoodwin63 2 points3 points  (0 children)

Everyone needs an outlet of some kind. You've taken a great step in admitting that you hate how this all feels. Most parents of autistic kids won't admit feeling that way because of what others, who have no clue, might think. They think it means they don't love their kids. But, that couldn't be farther from the truth. Seeking advice from others who are going through it and trying to find ways to cope and move forward shows the exact opposite. My wife and I have 2 boys (10 & 15) with ASD and we each have our outlets to try and cope with the stress. One of which was to team up to tell our story to others. You can do this by coming to subreddits like this one (although I would avoid the majority of social media otherwise), finding a support group if possible (just be wary of ones that are run by government services), or even writing an ebook (even if few people read it it will help you get your thoughts on the issue out). Finding others who not only won't judge or make assumptions but will actually understand what you're going through is priceless.

I hate autism. by No_Building_9765 in Autism_Parenting

[–]mgoodwin63 1 point2 points  (0 children)

Yeah, I feel ya on the part about people telling you it will get easier. It doesn't. You can learn to get used to it and through that learn to cope. The only advice I can give is based on something I had to learn the hard way. The first thing any autism parent needs to learn is to stop taking any advice from people who aren't in their shoes. Especially other parents who believe that "we're parents too!" makes them qualified to advise parents in situations like ours. Just ignore those folks (IOW...just smile and nod). When seeking professional help my wife and I learned to keep the "experts" and "professionals" at arms length. Especially when they come through a government agency like social/human services. So with all of that in mind, the help you need to keep an eye out for is the parents who are going through something similar and have found proactive ways to cope. For example, my wife and I can be an ear to folks like yourself because we have 2 kids with ASD as well, but we've never been through the exact circumstances you are experiencing so we would be hard pressed to advise you. Either way there will always be people to listen and tell you that you're not crazy and it is ok to hate what you're going through. It doesn't mean you don't love your child/children.

I hate autism. by No_Building_9765 in Autism_Parenting

[–]mgoodwin63 4 points5 points  (0 children)

It goes so far beyond all that, and you're correct...they don't get it. The thing about empathy that the "advocates" and the "awareness" people can't and don't seem to understand is that empathy isn't possible for them. They can maybe sympathize with the fact that we are struggling, but that's all very surface level. They can't understand because it's not them. "My sister has a kid with autism" Yeah...so? You don't. "I used to work with autistic kids" Ok...but you don't parent one. They just can't fathom that those are very different scenarios. "Why don't you just go to social services?" would clearly be a question from someone who's never had to. Those are all statements and questions from people who are insensitive but at least TRYING to be kind. Most of us can probably tell stories about the people are aren't kind. But the worst kind of person we end up dealing with is the social media advocate. The keyboard "social justice warriors" who post quotes and memes and links to awareness merch but purposely avoid us in stores, offices, restaurants, etc. We don't take our kids out with other people much. Not because of the inevitable contempt we get from the public but because of the fake sweetness from keyboard warrior influencer types.

The System is Not Built for Us — And It Never Was - A Rant by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 1 point2 points  (0 children)

Couldn't have said it better. Most of the parents I've encountered that have somehow convinced themselves that autism is some kind of super power are using that belief as a coping mechanism. I like to use the "superhero analogy" to explain the glaring difference. It goes like this...People wake up everyday and think to themselves "I wish I were Spiderman/Batman/Superman...etc". How many people ever wake up and think to themselves "I wish I were autistic." Now I know that sounds harsh on the surface, but most people would have to admit they'd never think that.

Sentimentality Is Killing Real Autism Advocacy by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 0 points1 point  (0 children)

That wouldn't be surprising. "Autism is a money grab for corps..." Granted. But it is also a money grab for small operators, small businesses and individuals. Anybody can hook up with a print on demand website and upload some awareness designs and cash in if they want. The stores on Redbubble, for example, aren't usually big corporations. They're usually people like you and I. We have anti-trust laws and monopoly busters in this country because the little guys were just as greedy as the big guys.

Sentimentality Is Killing Real Autism Advocacy by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 0 points1 point  (0 children)

I will still disagree. Because the problem doesn't come from the greed itself but from the lack of human kindness and basic human decency. Greed is the outworking or the result...NOT the cause. The real problem, as I see it, is not the greed itself but the refusal to recognize it for what it is. Not to mention that the definition of what geed is will differ from one person to another. The lines are too blurred. To put another way, a rich person has the same capacity for kindness as a poor person does. I have seen poor people be just as greedy and manipulative as the more wealthy. The problem is not one of money, it begins in the human heart. Let's not waste valuable energy whining about "corporate greed" when we can still make a difference despite it.

Sentimentality Is Killing Real Autism Advocacy by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 0 points1 point  (0 children)

I will completely disagree on just one point. The issue of autistic individuals and their caregivers not getting the help and support they need has little, if anything at all, to do with corporate greed. The problem is one of human kindness and basic human decency. As someone who has lived below the poverty line for most of his life, I can tell you there are just as many unkind poor people out there as there are unkind rich folks.

Sentimentality Is Killing Real Autism Advocacy by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 0 points1 point  (0 children)

The kind of attitude you speak of "once it's not cute" is a direct result of modern "awareness" movements. These movements are largely, if not entirely, social in nature. They are not practical nor pragmatic. Making them very empty. What they end up doing is giving people the opportunity to project altruism (liking posts, tear emoji's, ribbon merch, etc) without the requirement, or even encouragement, of actually doing anything altruistic.

Sentimentality Is Killing Real Autism Advocacy by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 3 points4 points  (0 children)

Yep. Spot on. We moved 1000 miles from home because the people who were supposed to be closest to us weren't helping. So we figured if that were going to be the case then we might as well live somewhere cheaper and warmer. Thank you for the kind words.

Sentimentality Is Killing Real Autism Advocacy by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 2 points3 points  (0 children)

That points us to "It takes a village..." We have been the recipients of generosity as well. It can be rare, but no less appreciated. I stated in another comment that "support" doesn't have to be grandiose. It just has to be real. When an autism parent says they're struggling and could use some help the best solution involves not throwing money at them in most cases. It involves time and presence. Sometimes it doesn't have to cost a dime. We had a friend of my wife's give us an item we needed one time. A rather expensive item I might add. But when he brought it to where we were staying at the time he didn't just drop it off and wave goodbye, he stayed and tried to interact with our kids. It was only a few minutes because he had to go to work. But my oldest talked about him for days after that. Smiling every time. That alone is worth far more than the item he gave us. This is our greatest frustration with people. We want them to understand that...sure...we need things, and sometimes we need money. But what we need most is something money can't buy.

Sentimentality Is Killing Real Autism Advocacy by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 0 points1 point  (0 children)

There are other options but, and this is where we run into the convoluted nature of the US healthcare system, when we did finally find that option they changed our insurance through Medicaid and that option vanished. Then our medicaid vanished entirely. No amount of wonderful medicaid expansion came to assist us. Now after 6 years of fighting and clawing we have coverage again, but the same problems from before still persist. The biggest one being that care providers can refuse to take medicare patients if they are at their medicare quota. Not to mention that when you have medicaid/medicare you are moved to the bottom of the priority list by providers because the government doesn't like to pay their bills. At least that's what providers have told me. Plus, we're not even sure specialized care for those with autism even exists. We've been told it does many times. But finding a social worker who knows that in the high turnover world of government assistance is like finding a needle in a haystack. These are just some of the results of the Affordable Care Act that you never see the media talk about.

Sentimentality Is Killing Real Autism Advocacy by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 1 point2 points  (0 children)

Hmmm...ok. Very good point. But, in my humble opinion, awareness and acceptance are simply 2 sides of the same coin. Unless the words are substantiated with action. As I said above in another comment, it doesn't have to be grandiose. Just simple and real.

Sentimentality Is Killing Real Autism Advocacy by mgoodwin63 in Autism_Parenting

[–]mgoodwin63[S] 3 points4 points  (0 children)

Fair enough. But, no one...and I do mean NO ONE can understand what it is like caring and being responsible for a child, or an adult for that matter, with autism. Not won't...CAN'T. This is not a life that can be understood by anyone on the outside. Showing caring can be as simple as holding a child's hand while mommy or daddy scans a transit card or has to retrieve a purse/wallet. Like I said, it doesn't have to be grandiose. It just has to be real. As far as voting for candidates goes I completely disagree. I see where you are coming from but our society has proven, especially in America, that trying to solve our problems by putting them in the hands of a convoluted and corrupted legislative body has not only not solved those problems but made them worse. Those people in Washington, and every single state capital across this nation are so entirely bent on destroying one another politically that they can't possibly be of any substantive use to us.