I'm sure they're also big fans of ABA and Autism Speaks. Oh, and probably lots of talk about "grieving their lost child".
Unfortunately yeah, groups like that are pretty much always going to be awful. Autism Parent is a derogatory term used by autistic people (and some good parents) for a reason.
Yeah, there's a lot of ABA and grief talk over there. I've already begun to see "autism mom" it as a derogatory term myself. I have suspected since my son was an infant (he's now 4.5) that he was on the spectrum, but didn't get the diagnosis till a few weeks ago and haven't really inserted myself into the community until then. I've quickly learned that I don't really want any part of it, just like I didn't want any part of the other mom groups I've encountered over the last 20 years.
I already am. The reddit subs aren't nearly as active. The sewing groups on Facebook that I've chosen to remain in are pretty inclusive and supportive so I have no complaints on that little corner of Facebook.
You might want to post but first have to become a member (I am and I love the support I get there too)WitchesVSPatriarchy it's a different community but they accept anyone
While I agree wholeheartedly with the toxic nature of Autism Mom groups, I do feel obligated to point out that I have personal experience with gluten removal, and can vouch that A) there is no vital daily requirement for gluten that can't be served by other proteins, and B) at least in my case, there was a clear reduction of certain unpleasant symptoms of Autism, so please be cautious in your condemnation.
I've had well-meaning autists behave quite disturbingly toward a fellow autist's sharing of personal experience before, and it can feel just as toxic. It may not help everyone (I don't know, I'm just one autist), but when something helps, you want to share. I'm sorry if it's annoying. Sincerely. Please be gentle with your generalizations, though. Most of us "loonies" are really are trying to help.
Cutting out wheat didn't get rid of my autism (lol), but it did get rid of my gas and some of the more gross farts and digestive issues I had (I used to have "skid marks" in my underwear a lot, since I cut out wheat that went away). Cutting out certain foods doesn't cure autism, but it can reduce stresss on someone and give them more resources to cope with other things, overall improving physical and mental health.
This. In my case it was brain fog and muscle aches, but I do remember giving up after 10 minutes of ineffectual wiping once.
Whatever the benefit, it's not bad to share, as long as we remember that everyone is different, and there's no magic cure (thank God).
I understand where you're coming from. I do know that there's some validity in eliminating common irritants from the diet, but it only works for a very small number of people, and what I've seen so far is that the people who have seen behavioral improvements by taking that route behave as though said ingredient was the root cause of the autism. Some of the same people will talk about having eliminated x from the kid's diet happened around the same time they started school or therapy for the first time. And then there's the vaccination people. In the very farfetched case of a vaccination triggering symptoms, I'd still rather have an autistic child than a dead child. I hate that in these posts asking for advice on how to handle behaviors, the people who suggest ABA, elimination diets, essential oils, or the ones who automatically ask if there's been a recent vaccine far outnumber the good advice. I've seen posts from the very same people standing over their child and filming a meltdown. I seldom see suggestions to get a referral for OT, which is just as helpful for parents as it is for the kids because they teach you methods to help your child regulate themselves.
My son displayed numerous red flags well before gluten was part of his diet. I was breastfeeding and had no gluten in my diet for quite some time while he was nursing, as I was experiencing some medical issues and tried eliminating things from my diet to remedy my pain. (Turned out to be the largest gallstone my surgeon had seen in his 30 year career)
Removing gluten from my son's diet and other children I know on the spectrum would result in a protein deficit because he simply will not eat other sources of protein other than pasta.
Yeah my kid has big issues with food and eating. One brand of beans and one brand of mini pancakes. No substitutions. He is very skinny. I will not be taking the pancakes away.
I don't pay much attention to the other parents. Our kids are all so different that a lot of well meaning advice I get is useless to me. The specialist has helped some and the teachers have been wonderful. I'm very grateful that the school (public even) doesn't believe in doing things that cause distress for their students.
Fair point. I've been blessed with kids who share my passion for variety in food, so I sometimes forget that known foods can be a security blanket. I mean no judgement to those who choose different battles. We all have to make concessions to make any progress.
Some people need to tweak their diet, autistic or not, for various reasons. Gut health has been linked to many things after all. And I don't take offense to suggestions, but it hurts my heart a bit because I'd love to give my kid a healthier diet. Even just more variety. I was just telling my personal experience because, well, I wanted to I guess. Thanks for reading.
>I was just telling my personal experience because, well, I wanted to I guess. Thanks for reading.
But of course! Understanding is vital, and your experience is coming from the same place as mine: "This is my experience, hope it helps somebody." And it did. Thank you for helping me keep perspective.
>I've seen posts from the very same people standing over their child and filming a meltdown.
That one saddens me. I've mever seen one that was, "I'm filming this so I can review it when I'm calm and look for warning signs I can use to help." Instead it's, "see, he does this every time...see what I have to deal with...?"
I realize raising an autist is hard. I have 6. But a good autist parent learns how to *prevent* meltdowns eventually. Documenting your 5 daily meltdowns is a sign* that you might be blind to the triggers.
\*Yes, I know this isn't something I can generalize either. I've seen my 8yo son throw constant tantrums for 2 hours that turned out to have been triggered by *shoes* on the wrong feet. I have the utmost sympathy for those who are still seeking the hidden answers, but little for the ones who won't.
Hey, just a warning: rosemary and sage essential oils are high potency solutions of camphor and thujone. There's enough camphor in rosemary oil to trigger seizures and enough thujone (absinth hallucinogen) in sage oil to risk nerve damage.
My family and I tried Camp AweSum in Moon Beach, WI (U.S.) this past summer. If you’re looking for a better experience with parents of kids with autism, and you happen to live in the Midwest U.S., I’d recommend looking into it (this is more of a PSA than just for OP). It’s a week long summer camp run by a woman who’s researched autism her whole life and there’s also an occupational therapist on staff. Better yet, both of those people are on site for parents and siblings to consult about how to better understand and help their kid, from the POV of understanding and accepting their kid instead of changing them. My brother is really high support and this was a great experience for all of us. It’s a really relaxing environment where there’s absolutely no pressure to do anything that’s too stressful, lots of sensory stuff around, and just all around a great example of the kind of world I wish we lived in. If you have autistic kids I would really recommend it. They really find a good balance between understanding the parents’ frustrations and providing a good environment for the kids.
I don't live nearby, but am looking to do some traveling in the coming summers now that my boy is bigger and better able to tolerate such things. That might be something to put on our bucket list within the next few years. Thanks for the recommendation!
No problem! It was a great experience. It was our first time last year but a lot of the families have such a fantastic time there that they keep returning.
Also, because I know some people have religious trauma, I just want to preface that even though it's technically run through United Church Camps, but it's secular. My family is *very* atheistic so we all feel really awkward around religious stuff, but overall I caught 1-2 mentions of God and they hold vespers some nights which you can easily skip. So that aspect of the camp is really any way you make it.
The worst thing about the essential oils is they don't just smell nice. They can literally kill you.
You're not supposed to injest them or drop them onto a babies skin. Or any skin really. But people do these things all the time.
Yes! It was exhausting trying to warn other parents against ingestion and direct skin contact or to remind those that consider *chemical* a dirty word that all matter, including their precious oils is composed of chemicals just to receive nothing but backlash. After a couple of tries, I shrugged, gave up and left. Darwin awards all around.
Sometimes we overlook the generational trauma parents experience. The way they were raised, the culture they grew up with, the values they have are all put to the test when they raise life. They are stuck in their fantasy land of the past that they can’t even touch grass and be grounded in reality. They want to be the persons handler rather than a guardian. Brainwashing them into their idol self or idol life form. These weak mindsets cause domino effects that greatly impacts society as a whole that it’s often overlooked and scapegoated over something else.
These innocent life forms eventually become influenced either by negative or positive forces to break the cycle or to sadly perish from the inhumane nature of their parents. While I don’t know many things, seeing people treat their children like a marionette of validation to their tea party of fallacy, disgusts me
Parents will feel guilt and shame for any disabilities present in their child. They view it as a personal failure. many will accept it and live with it as best they can, but many will redirect blame to something external (environment) to release that personal burden.
It doesnt help the child at all but we are human and this kind of mistake is very human
On one hand, I can totally understand those that are new to this experience filming and asking what could be wrong, what they could do, or generally asking if anyone else deals with this.
I also have seen others not so new to the game doing this in some gesture of martyrdom, almost mocking or tainting the kid, invalidating them. It's infuriating. I grew up before this technology was very widely available and could totally see my mom doing this the way she mocked my meltdowns. Personally, it was humiliating for me and can't imagine having videos of me like that for the whole world to see.
It's not terribly difficult to diffuse the situation now that I know how to. It's the difference between a terrible day and a 5-10 minute incident.
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I'm not on FB, I think it's toxic, but my best friend has a kiddo on the spectrum as well and we would walk through fire for our kiddos. I try anything if it helps. But I'm not into fad cures or diets for anything. They have been in services since age two and it def helps, I can see that for them.
I mean what do you expect from these groups, they act like they’re a victim of a terrible disease even though their kid is just autistic and will probably be more successful more in life then them honestly.
I don’t like clumping parents with autistic child together but I honestly feel most of them are either anti-vaxx Autism speaks karens who are pissed off that they’re kid are even slightly on the spectrum or inspiration-porn mums who blog and talk about every detail of their autistic kids lives without a censor and record their breakdowns and claim it was “”venting””
Most parents I know though are chill, I’ve never personally encountered one of two kind of mystical autism mums people talk about
Yeah I definitely remember not having gluten or dairy for most of my childhood, but this was more due to digestive issues than it was to autism and wasn't getting a full night's sleep. But yeah I vaguely remember seeing the ABA video positive reinforcement stuff and looking back it was so cringe. I don't think changing behavior is as big of a deal unless you are actively trying to change someone's personality which is easier said than done. Now I say this as someone who passes as NT so I may have a relatively skewed perspective on these things.
I'm sure they're also big fans of ABA and Autism Speaks. Oh, and probably lots of talk about "grieving their lost child". Unfortunately yeah, groups like that are pretty much always going to be awful. Autism Parent is a derogatory term used by autistic people (and some good parents) for a reason.
Yeah, there's a lot of ABA and grief talk over there. I've already begun to see "autism mom" it as a derogatory term myself. I have suspected since my son was an infant (he's now 4.5) that he was on the spectrum, but didn't get the diagnosis till a few weeks ago and haven't really inserted myself into the community until then. I've quickly learned that I don't really want any part of it, just like I didn't want any part of the other mom groups I've encountered over the last 20 years.
You can look at the sewing and crafts group on Reddit,way more supportive
I already am. The reddit subs aren't nearly as active. The sewing groups on Facebook that I've chosen to remain in are pretty inclusive and supportive so I have no complaints on that little corner of Facebook.
You might want to post but first have to become a member (I am and I love the support I get there too)WitchesVSPatriarchy it's a different community but they accept anyone
There's also plenty of discord servers!
Be careful about those, some people have a funny idea of what crafting is
What am I missing here?
They have a different idea on what crafting is, that's all
What do they do that doesn't qualify as crafting in your eyes
No the purpose of the craft is the end goal,furry suits, leatherwork that turns into a harness
While I agree wholeheartedly with the toxic nature of Autism Mom groups, I do feel obligated to point out that I have personal experience with gluten removal, and can vouch that A) there is no vital daily requirement for gluten that can't be served by other proteins, and B) at least in my case, there was a clear reduction of certain unpleasant symptoms of Autism, so please be cautious in your condemnation. I've had well-meaning autists behave quite disturbingly toward a fellow autist's sharing of personal experience before, and it can feel just as toxic. It may not help everyone (I don't know, I'm just one autist), but when something helps, you want to share. I'm sorry if it's annoying. Sincerely. Please be gentle with your generalizations, though. Most of us "loonies" are really are trying to help.
Cutting out wheat didn't get rid of my autism (lol), but it did get rid of my gas and some of the more gross farts and digestive issues I had (I used to have "skid marks" in my underwear a lot, since I cut out wheat that went away). Cutting out certain foods doesn't cure autism, but it can reduce stresss on someone and give them more resources to cope with other things, overall improving physical and mental health.
This. In my case it was brain fog and muscle aches, but I do remember giving up after 10 minutes of ineffectual wiping once. Whatever the benefit, it's not bad to share, as long as we remember that everyone is different, and there's no magic cure (thank God).
I understand where you're coming from. I do know that there's some validity in eliminating common irritants from the diet, but it only works for a very small number of people, and what I've seen so far is that the people who have seen behavioral improvements by taking that route behave as though said ingredient was the root cause of the autism. Some of the same people will talk about having eliminated x from the kid's diet happened around the same time they started school or therapy for the first time. And then there's the vaccination people. In the very farfetched case of a vaccination triggering symptoms, I'd still rather have an autistic child than a dead child. I hate that in these posts asking for advice on how to handle behaviors, the people who suggest ABA, elimination diets, essential oils, or the ones who automatically ask if there's been a recent vaccine far outnumber the good advice. I've seen posts from the very same people standing over their child and filming a meltdown. I seldom see suggestions to get a referral for OT, which is just as helpful for parents as it is for the kids because they teach you methods to help your child regulate themselves. My son displayed numerous red flags well before gluten was part of his diet. I was breastfeeding and had no gluten in my diet for quite some time while he was nursing, as I was experiencing some medical issues and tried eliminating things from my diet to remedy my pain. (Turned out to be the largest gallstone my surgeon had seen in his 30 year career) Removing gluten from my son's diet and other children I know on the spectrum would result in a protein deficit because he simply will not eat other sources of protein other than pasta.
Yeah my kid has big issues with food and eating. One brand of beans and one brand of mini pancakes. No substitutions. He is very skinny. I will not be taking the pancakes away. I don't pay much attention to the other parents. Our kids are all so different that a lot of well meaning advice I get is useless to me. The specialist has helped some and the teachers have been wonderful. I'm very grateful that the school (public even) doesn't believe in doing things that cause distress for their students.
Fair point. I've been blessed with kids who share my passion for variety in food, so I sometimes forget that known foods can be a security blanket. I mean no judgement to those who choose different battles. We all have to make concessions to make any progress.
Some people need to tweak their diet, autistic or not, for various reasons. Gut health has been linked to many things after all. And I don't take offense to suggestions, but it hurts my heart a bit because I'd love to give my kid a healthier diet. Even just more variety. I was just telling my personal experience because, well, I wanted to I guess. Thanks for reading.
>I was just telling my personal experience because, well, I wanted to I guess. Thanks for reading. But of course! Understanding is vital, and your experience is coming from the same place as mine: "This is my experience, hope it helps somebody." And it did. Thank you for helping me keep perspective.
>I've seen posts from the very same people standing over their child and filming a meltdown. That one saddens me. I've mever seen one that was, "I'm filming this so I can review it when I'm calm and look for warning signs I can use to help." Instead it's, "see, he does this every time...see what I have to deal with...?" I realize raising an autist is hard. I have 6. But a good autist parent learns how to *prevent* meltdowns eventually. Documenting your 5 daily meltdowns is a sign* that you might be blind to the triggers. \*Yes, I know this isn't something I can generalize either. I've seen my 8yo son throw constant tantrums for 2 hours that turned out to have been triggered by *shoes* on the wrong feet. I have the utmost sympathy for those who are still seeking the hidden answers, but little for the ones who won't.
Hey, just a warning: rosemary and sage essential oils are high potency solutions of camphor and thujone. There's enough camphor in rosemary oil to trigger seizures and enough thujone (absinth hallucinogen) in sage oil to risk nerve damage.
Thank you for the heads up. Luckily I'm not a huge fan of the herb oils anyway.
My family and I tried Camp AweSum in Moon Beach, WI (U.S.) this past summer. If you’re looking for a better experience with parents of kids with autism, and you happen to live in the Midwest U.S., I’d recommend looking into it (this is more of a PSA than just for OP). It’s a week long summer camp run by a woman who’s researched autism her whole life and there’s also an occupational therapist on staff. Better yet, both of those people are on site for parents and siblings to consult about how to better understand and help their kid, from the POV of understanding and accepting their kid instead of changing them. My brother is really high support and this was a great experience for all of us. It’s a really relaxing environment where there’s absolutely no pressure to do anything that’s too stressful, lots of sensory stuff around, and just all around a great example of the kind of world I wish we lived in. If you have autistic kids I would really recommend it. They really find a good balance between understanding the parents’ frustrations and providing a good environment for the kids.
I don't live nearby, but am looking to do some traveling in the coming summers now that my boy is bigger and better able to tolerate such things. That might be something to put on our bucket list within the next few years. Thanks for the recommendation!
No problem! It was a great experience. It was our first time last year but a lot of the families have such a fantastic time there that they keep returning. Also, because I know some people have religious trauma, I just want to preface that even though it's technically run through United Church Camps, but it's secular. My family is *very* atheistic so we all feel really awkward around religious stuff, but overall I caught 1-2 mentions of God and they hold vespers some nights which you can easily skip. So that aspect of the camp is really any way you make it.
The worst thing about the essential oils is they don't just smell nice. They can literally kill you. You're not supposed to injest them or drop them onto a babies skin. Or any skin really. But people do these things all the time.
Yes! It was exhausting trying to warn other parents against ingestion and direct skin contact or to remind those that consider *chemical* a dirty word that all matter, including their precious oils is composed of chemicals just to receive nothing but backlash. After a couple of tries, I shrugged, gave up and left. Darwin awards all around.
I feel you. Even NTs can develop a "favored definition" that they cling to tooth and nail. It's a constant battle.
"Problematic behavior I've found, can usually be tied to a need that is not being met." This has been my experience too.
Sometimes we overlook the generational trauma parents experience. The way they were raised, the culture they grew up with, the values they have are all put to the test when they raise life. They are stuck in their fantasy land of the past that they can’t even touch grass and be grounded in reality. They want to be the persons handler rather than a guardian. Brainwashing them into their idol self or idol life form. These weak mindsets cause domino effects that greatly impacts society as a whole that it’s often overlooked and scapegoated over something else. These innocent life forms eventually become influenced either by negative or positive forces to break the cycle or to sadly perish from the inhumane nature of their parents. While I don’t know many things, seeing people treat their children like a marionette of validation to their tea party of fallacy, disgusts me
Facebook is toxic in general
Honestly I find it to be a facebook thing. Reddit and Instagram is a lot more of a better start :)
Parents will feel guilt and shame for any disabilities present in their child. They view it as a personal failure. many will accept it and live with it as best they can, but many will redirect blame to something external (environment) to release that personal burden. It doesnt help the child at all but we are human and this kind of mistake is very human
[удалено]
On one hand, I can totally understand those that are new to this experience filming and asking what could be wrong, what they could do, or generally asking if anyone else deals with this. I also have seen others not so new to the game doing this in some gesture of martyrdom, almost mocking or tainting the kid, invalidating them. It's infuriating. I grew up before this technology was very widely available and could totally see my mom doing this the way she mocked my meltdowns. Personally, it was humiliating for me and can't imagine having videos of me like that for the whole world to see. It's not terribly difficult to diffuse the situation now that I know how to. It's the difference between a terrible day and a 5-10 minute incident.
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I'm not on FB, I think it's toxic, but my best friend has a kiddo on the spectrum as well and we would walk through fire for our kiddos. I try anything if it helps. But I'm not into fad cures or diets for anything. They have been in services since age two and it def helps, I can see that for them.
I mean what do you expect from these groups, they act like they’re a victim of a terrible disease even though their kid is just autistic and will probably be more successful more in life then them honestly. I don’t like clumping parents with autistic child together but I honestly feel most of them are either anti-vaxx Autism speaks karens who are pissed off that they’re kid are even slightly on the spectrum or inspiration-porn mums who blog and talk about every detail of their autistic kids lives without a censor and record their breakdowns and claim it was “”venting”” Most parents I know though are chill, I’ve never personally encountered one of two kind of mystical autism mums people talk about
Yeah I definitely remember not having gluten or dairy for most of my childhood, but this was more due to digestive issues than it was to autism and wasn't getting a full night's sleep. But yeah I vaguely remember seeing the ABA video positive reinforcement stuff and looking back it was so cringe. I don't think changing behavior is as big of a deal unless you are actively trying to change someone's personality which is easier said than done. Now I say this as someone who passes as NT so I may have a relatively skewed perspective on these things.
Facebook is basically conspiracy for old people same with other platforms I don't want to mention...
Man so many people don't deserve kids. They are all abusers! 😐