View Full Version : Autism: "heartbreak" or acceptance?


BellaVita
04-29-16, 10:03 AM
MODERATOR NOTE: This thread has been split off from a thread about vaccines (http://www.addforums.com/forums/showthread.php?t=177094)so as not to hijack the original thread.

Long story short. I have a daughter with autism. She is now 16. [...] For those of us personally affected, it is a heartbreaking issue.

I don't know if this helps but I have memories [of my feelings/semi-thoughts - when I was in the crib] before the age of 2 and based off those memories I know I thought the same as I do today. I was born autistic and have always been autistic.

It's not a heartbreaking issue, I'm sorry but autism isn't heartbreaking. That sounds as if autistics are a bad thing. Or a disease. We're not.

Thank you for listening.

Socaljaxs
04-29-16, 11:26 AM
It's not a heartbreaking issue, I'm sorry but autism isn't heartbreaking. That sounds as if autistics are a bad thing. Or a disease. We're not.

Thank you for listening.
:thankyou::goodpost::yes: I 100% agree that someone that has any form ,or is considered to fall anywhere along the spectrum of autism, wouldn't and shouldn't in my opinion be considered heartbreaking nor should one be pitied, nor should the parents be looked at with pity either.

The only heartbreaking and sadness that I feel should exist for a person that is autistic, or the family's involved is the lack of acceptance received, and the treatment a person receives due to this.. '"Some"people(this is no way considered true for all, but for some) their is a surrounding attitude that seems to be given when one states a child or an individual is autistic.. I've witness when one is told so and so is autistic the reaction. Attitude issometimes recieved with a " poor me/you,such a Pity, victimized attitude" some parents and others seem to have in regards to this.. Also the lack of patience and tolerance and education that surrounds it along with almost anything that is considered "different" is how their are too many negative and grief that seems to surround it.

Fuzzy12
04-29-16, 12:45 PM
If it's heart breaking for someone then it is heart breaking. I don't think we should make them feel guilty on top of that for feeling that way or expressing it.

Also as far as I know autism can occur on quite large spectrum of functionality. I could be wrong but I can imagine that for some autistics (and their families) autism can cause more problems and more suffering than for others.

BellaVita
04-29-16, 11:31 PM
If it's heart breaking for someone then it is heart breaking. I don't think we should make them feel guilty on top of that for feeling that way or expressing it.

Also as far as I know autism can occur on quite large spectrum of functionality. I could be wrong but I can imagine that for some autistics (and their families) autism can cause more problems and more suffering than for others.

I strongly disagree.

I felt like the person was saying that autism is heartbreaking, and that's why I responded the way I did.

Here's a way to look at it:
Imagine a family of autistics, and if one is born neurotypical they try to change them to make them autistic. What if the words "it's heartbreaking" that this person is neurotypical were used.

If that were to happen, I'm sure people would be greatly offended.

Why is it okay to speak about autistic people in that way?

In my opinion using words like "it's heartbreaking" is detrimental to the autistic community. It pushes the old idea that autism is a tragedy, a disease, something that destroys families.

I wasn't using guilt by the way, I was trying to share why the words heartbreaking can be hurtful.

The majority of autistics don't want a cure, from my research. Even the non-verbal (I dislike functioning labels, but just so you get what I mean: "severe") ones often say they do not want a cure, and also that the verbal autistics do speak for them.

There are many blogs out there written by non-verbal autistics who speak on this issue. It's quite enlightening and definitely worth a Google search. I even read a blog post from a non-verbal autistic who requires 24/7 care who said they don't want a cure and that it hurts them when people suggest that.

By the way, studies show that the outcomes for verbal autistics are similar to the outcomes of non-verbal autistics. (Their life outcomes)

What we need is acceptance, as SoCal mentioned. :)

Fuzzy12
04-30-16, 12:51 AM
I strongly disagree.

I felt like the person was saying that autism is heartbreaking, and that's why I responded the way I did.

Here's a way to look at it:
Imagine a family of autistics, and if one is born neurotypical they try to change them to make them autistic. What if the words "it's heartbreaking" that this person is neurotypical were used.

If that were to happen, I'm sure people would be greatly offended.

Why is it okay to speak about autistic people in that way?

In my opinion using words like "it's heartbreaking" is detrimental to the autistic community. It pushes the old idea that autism is a tragedy, a disease, something that destroys families.

I wasn't using guilt by the way, I was trying to share why the words heartbreaking can be hurtful.

The majority of autistics don't want a cure, from my research. Even the non-verbal (I dislike functioning labels, but just so you get what I mean: "severe") ones often say they do not want a cure, and also that the verbal autistics do speak for them.

There are many blogs out there written by non-verbal autistics who speak on this issue. It's quite enlightening and definitely worth a Google search. I even read a blog post from a non-verbal autistic who requires 24/7 care who said they don't want a cure and that it hurts them when people suggest that.

By the way, studies show that the outcomes for verbal autistics are similar to the outcomes of non-verbal autistics. (Their life outcomes)

What we need is acceptance, as SoCal mentioned. :)

What ever you think about autism if someone says they find it heart breaking it's not anyone's business to tell them that their feelings are wrong. In no way did that poster indicate that they wanted a cure or think less in any way of their child but you can't know how much they are suffering, why exactly they are suffering or if they have a right to feel heart broken or not. We do need more acceptance but if it doesn't apply to everyone it's not acceptance.

I have a relative who is autistic (among other things). To see them suffering due to loud noises is heart breaking. That doesn't mean they are a tragedy or a disease but neither should their suffering be trivialised.

BellaVita
04-30-16, 01:46 AM
What ever you think about autism if someone says they find it heart breaking it's not anyone's business to tell them that their feelings are wrong.

I feel like I need to speak up on things that could negatively affect the autistic community.

I was explaining how it can be a dangerous thought process towards the autistic community. And it can be hurtful.

In no way did that poster indicate that they wanted a cure or think less in any way of their child but you can't know how much they are suffering, why exactly they are suffering or if they have a right to feel heart broken or not. We do need more acceptance but if it doesn't apply to everyone it's not acceptance.

I know, I just thought it might be helpful to mention those things.

This is the phrase I was commenting on, look at the wording:
For those of us personally affected, it is a heartbreaking issue.

The question is: did the poster mean that autism is a heartbreaking issue? That vaccines possibly causing autism is a heartbreaking issue?

Those are the things I'm responding to, if the poster meant one of those things.

Also, what does "for those of us personally affected" mean?

I have a hard time accepting ways of thinking that are dangerous to the autistic community or could cause us to suffer more.

I have a relative who is autistic (among other things). To see them suffering due to loud noises is heart breaking. That doesn't mean they are a tragedy or a disease but neither should their suffering be trivialised.

I think there is a big difference from saying it is heartbreaking to see them suffering, and autism being a "heartbreaking issue."

The difference is, yes, it is definitely heartbreaking to see someone suffer or in mental and/or physical pain.

To say autism is a heartbreaking issue, in my opinion, puts it into the same category as things such as AIDS and cancer.

stef
04-30-16, 02:29 AM
I read this straight away, as the ISSUE of vaccines or not, and relatedly , seeing a loved one suffer, from anything, is heartbreaking; but not autism itself.

midnightstar
04-30-16, 05:09 AM
My younger brother's got aspbergers (sp) (high functioning form of autism), he was born with it and I think it would affect him worse if he was to be "cured" of it, he's never been able to understand NTs and even if autism was cured that would only isolate him more because he wouldn't know how to function "normally".

BellaVita
04-30-16, 05:19 AM
My younger brother's got aspbergers (sp) (high functioning form of autism), he was born with it and I think it would affect him worse if he was to be "cured" of it, he's never been able to understand NTs and even if autism was cured that would only isolate him more because he wouldn't know how to function "normally".

Thanks for sharing midnightstar.

I feel like I wouldn't be me anymore if my autism were cured, because there is no way to separate it from myself. It is a part of how I see the world, interact with it, feel things, know myself, and others.

I would be a person who looks like me, but isn't me.

Fuzzy12
04-30-16, 05:33 AM
That's not the point. The point is that you can't decide for someone else what they are allowed to find heart breaking.

BellaVita
04-30-16, 05:44 AM
That's not the point. The point is that you can't decide for someone else what they are allowed to find heart breaking.

I wasn't. I was educating saying how saying autism is "heartbreaking" can be harmful.

I feel like you're trying to make an issue where there isn't one. I'm not trying to decide someone's feelings. I'm trying to show how those thought processes and speaking about them could negatively affect the autistic community.

They said it's a heartbreaking issue which means something different. (Unless of course the poster pops in and explains how I've misunderstood)

Fuzzy12
04-30-16, 06:15 AM
I'm not making an issue. I'm responding to something you said that was insensitive and hurtful apart from uncalled for. You can continue arguing and listing things that I've never disagreed with but I'm going to bow out of this discussion.

BellaVita
04-30-16, 06:19 AM
I'm not making an issue. I'm responding to something you said that was insensitive and hurtful apart from uncalled for. You can continue arguing and listing things that I've never disagreed with but I'm going to bow out of this discussion.

It was not uncalled for - it is called for to educate others on how their words might negatively affect the autistic community. I do not see how trying to show someone that autism isn't heartbreaking is insensitive and hurtful.

What THEY said was very hurtful to me personally, and I was kindly trying to show them why.

sarahsweets
04-30-16, 08:53 AM
I'm not making an issue. I'm responding to something you said that was insensitive and hurtful apart from uncalled for. You can continue arguing and listing things that I've never disagreed with but I'm going to bow out of this discussion.

I'm not sure what Bella said about autism not being heartbreaking is any better or worse, insensitive or more hurful than what the original poster said about it being heartbreaking to those affected. And I dont think it was uncalled for being that Bella is autistic.

Since that person is not the autistic one, but rather family member, I would say that heartbreaking could be looked at as a poor choice of words. Maybe they meant autism is hard on the family because of the issues their child must overcome or that getting fair and equal treatment makes things difficult, but using the term heartbreaking I think, sounds a bit like they view their autistic family member as a lost cause. Like they can never hope to have a fulfilling life because of autism.

I feel like if the autistic person said "my autism is heartbreaking", it would make more sense because they are experiencing it, and are able to judge just how it feels. I am not saying that poster had any ill intent either, just maybe this is a semantics issue?
Either way, even if it is semantics, the autism community suffers a lot of sterotypes. People think of rain man, and think all autistic people are 'idiot savants' ( hate that term), or all autistic people can play by ear, any tune they hear, or all autistic people rock and bang their heads when stimming. Its just a matter of clarifying the stigma, and in Bella's case, strongly expressing her feelings as someone who is autistic and lives with autism.

I look at it like this: If my husband said being married to someone with bipolar was heartbreaking, I would hope someone would say something to him about it, because it implies that our life is full of manic chaos, risk taking behaviors, gambling,mood swings, etc. It doesnt take into account that I am medicated and that meds have saved our marriage and made life better for us. I say better because without meds things might be horrible.
I am not try to be contrary, I just dont look at what Bella said as uncalled for,

Little Missy
04-30-16, 10:07 AM
Being a parent, I would find it heartbreaking if my child was suffering in any way. But being logical, I would find the acceptance to help my child in every way possible.
I just think practically anything can read, understood, misinterpreted or found to be unacceptable or acceptable but sometimes the written words here, without seeing their faces can be misunderstood or taken as insensitive.

Perhaps the OP is heartbroken that her child will have to work that much harder than other children. Not negatively. Just genuine concern. What parent wouldn't?

I have to choose my battles wisely, and I'm far from it. I do the best that I am able to every single day.

Lunacie
04-30-16, 01:44 PM
My granddaughter is considered high functioning autistic, but it's doubtful that she will ever be able to drive a car, or hold a job.

No I don't find that heartbreaking, and we are doing the best we can to help her learn new things and enjoy her life.

But I have seen others with autism who never speak or find a way to communicate.

They live a life that is so frustrating that I do feel heartbroken for them.

So much depends on the severity of the disability and the kind of support that is available.

ginniebean
04-30-16, 02:07 PM
I sit on both sides of this fence. It is likely I am on the spectrum and at the same time I work with families and autistic individuals, both children and adults.

I assure you many oldrr children and adults do suffer. Much of it can be a lack of acceptance but that's not all of it. Crippling anxiety and other satelite disorders can make their lives hellish even with the best of support.

Many of my clients express a great deal of frustration almost daily. They want to have things like other people. Autonomy is a big one. I let my clients know I'm there to work with then, that I value their input and yes that I empathise with their hurts. Unless I'm willing to be vulnerable in order for them to feel safe with me to even discuss their feelings they won't be able to cross that barrier alone.

Just as it is for anyone, there are moments of heartbreak. Absolutely there are.

Watching a boy who LOVES basketball not be able to get out of the car to go play and cry helplessly. That's heartbreaking. Watching my son break up with his girlfriend is heartbreaking and he does not have autism.

Parents hearts break for the pain their child feels. Even if it is to wish that child didn't have to have all the extra obstacles in front of them. These things must be faced and cannot be denied.

However, if the heartbreak is coming from resentment of the child, of the circumstances. I think that is a parent that needa help. Projecting that resentment to the child or the condition is unfortunate and not so rare. That's when the parent needs help.
The parents of my clients all love their children deeply, their level of personal ability and reaources differ.

Anyway, my 2 cents

Lunacie
04-30-16, 02:19 PM
:thankyou: Bean. That's worth much more to me than 2 cents.

seemingly
04-30-16, 02:28 PM
This is great, ginniebean

aeon
04-30-16, 02:32 PM
“You must spread some Reputation around before giving it to ginniebean again.”

And you, forum software, can **** off. A pox on you.

Lunacie
04-30-16, 02:48 PM
The parents of an autistic child might have a different perspective on whether it's heartbreaking.

We know we won't be there forever to advocate and support our autistic child.

We may be heartbroken for a sibling who have to take on those responsibilities.

My daughter, the mother of my autistic granddaughter, has been depressed and heartbroken lately.

She acknowledges that we go thought some tough times and things get easier. But does that knowledge help when it is tough?

I wish I could share the link to the mom's blog that she linked to, but it has advertising on it.

Very thoughtful blog post from a special needs mom on not only getting the help our kids need, but also about getting the help that parents need.

Helloit'sme
04-30-16, 04:29 PM
I am the original "heartbreaking" poster. I am acquainted with several teens who are severely affected by autism. I was referring to that end of the spectrum. They are teens who are still in diapers, and cannot feed and dress themselves. They are non-verbal or have very little language. They often cry and seem fearful. Of course I have no idea what they are thinking because they cannot articulate it, but based on observation they appear very uncomfortable. They seem to be suffering. It is heartbreaking to witness this. My heart hurts for them and for their families who see them suffer and can do nothing about it. That is all I meant. Case closed.

Helloit'sme
04-30-16, 04:32 PM
I sit on both sides of this fence. It is likely I am on the spectrum and at the same time I work with families and autistic individuals, both children and adults.

I assure you many oldrr children and adults do suffer. Much of it can be a lack of acceptance but that's not all of it. Crippling anxiety and other satelite disorders can make their lives hellish even with the best of support.

Many of my clients express a great deal of frustration almost daily. They want to have things like other people. Autonomy is a big one. I let my clients know I'm there to work with then, that I value their input and yes that I empathise with their hurts. Unless I'm willing to be vulnerable in order for them to feel safe with me to even discuss their feelings they won't be able to cross that barrier alone.

Just as it is for anyone, there are moments of heartbreak. Absolutely there are.

Watching a boy who LOVES basketball not be able to get out of the car to go play and cry helplessly. That's heartbreaking. Watching my son break up with his girlfriend is heartbreaking and he does not have autism.

Parents hearts break for the pain their child feels. Even if it is to wish that child didn't have to have all the extra obstacles in front of them. These things must be faced and cannot be denied.

However, if the heartbreak is coming from resentment of the child, of the circumstances. I think that is a parent that needa help. Projecting that resentment to the child or the condition is unfortunate and not so rare. That's when the parent needs help.
The parents of my clients all love their children deeply, their level of personal ability and reaources differ.

Anyway, my 2 cents

Well said.

BellaVita
04-30-16, 09:25 PM
I'm not sure what Bella said about autism not being heartbreaking is any better or worse, insensitive or more hurful than what the original poster said about it being heartbreaking to those affected. And I dont think it was uncalled for being that Bella is autistic.

Since that person is not the autistic one, but rather family member, I would say that heartbreaking could be looked at as a poor choice of words. Maybe they meant autism is hard on the family because of the issues their child must overcome or that getting fair and equal treatment makes things difficult, but using the term heartbreaking I think, sounds a bit like they view their autistic family member as a lost cause. Like they can never hope to have a fulfilling life because of autism.

I feel like if the autistic person said "my autism is heartbreaking", it would make more sense because they are experiencing it, and are able to judge just how it feels. I am not saying that poster had any ill intent either, just maybe this is a semantics issue?
Either way, even if it is semantics, the autism community suffers a lot of sterotypes. People think of rain man, and think all autistic people are 'idiot savants' ( hate that term), or all autistic people can play by ear, any tune they hear, or all autistic people rock and bang their heads when stimming. Its just a matter of clarifying the stigma, and in Bella's case, strongly expressing her feelings as someone who is autistic and lives with autism.

I look at it like this: If my husband said being married to someone with bipolar was heartbreaking, I would hope someone would say something to him about it, because it implies that our life is full of manic chaos, risk taking behaviors, gambling,mood swings, etc. It doesnt take into account that I am medicated and that meds have saved our marriage and made life better for us. I say better because without meds things might be horrible.
I am not try to be contrary, I just dont look at what Bella said as uncalled for,

Thank you sarah! :thankyou: This post truly meant so much to me, and really helps to explain some things.


:goodpost:

BellaVita
04-30-16, 09:35 PM
I feel like I need to clarify my thoughts:

I'm not saying it is wrong to feel heartbroken over someone's suffering - not at all. I would feel the same. My point is that it could be detrimental to the autistic community to say that autism itself is heartbreaking.

I struggle daily with my autistic symptoms. I'm not one of those "oh she is barely autistic" people that some people might think.
I can't drive.
I meltdown when shopping, I can't do it alone. I can't even go to the cash register - even standing next to someone who is ringing up their things is often too much for me and I have to stand at the front of the store during that part.
I can't safely cross a street by myself most of the time because it's so overloading so I end up just dashing across the street and hope I make it.
I didn't finish college.
I can't work.
I can't be around people without getting overloaded.
If one little change in my routine occurs, I can't handle it and often meltdown. (By the way, meltdowns are totally awful and I wouldn't wish for anybody to experience one)
Noises are painful to me.
The sun is quite painful to me.(it can even make me nauseous)
Certain touches are physically painful to me at times.
Showers are very difficult for me, brushing my teeth is too.
I sometimes lose the ability to speak.
I AM one of those autistics who rocks back and forth and does certain ways of stimming that would probably make you all feel uneasy because you might think it's painful but it actually helps me.

That is just to name a few.

I deal with all of this stuff, yeah. But to me, hearing that autism is a "heartbreak" truly hurts me.

It feels in the same category as "burden" (which I've been called before by a family member) and it also feels condescending somehow.

It would mean a lot to me if people in the future said "his/her struggles are heartbreaking" but NOT saying autism itself is heartbreaking. Like Sarah said, it feels like it's saying I'm a lost cause.

BellaVita
04-30-16, 10:04 PM
I am the original "heartbreaking" poster. I am acquainted with several teens who are severely affected by autism. I was referring to that end of the spectrum. They are teens who are still in diapers, and cannot feed and dress themselves. They are non-verbal or have very little language. They often cry and seem fearful. Of course I have no idea what they are thinking because they cannot articulate it, but based on observation they appear very uncomfortable. They seem to be suffering. It is heartbreaking to witness this. My heart hurts for them and for their families who see them suffer and can do nothing about it. That is all I meant. Case closed.

I hope that those teens can find a way for their voice to be heard through technology.

Speaking is overrated.

There is a blog out there by a nonverbal autistic ("severe" as you'd call it) who requires 24/7 care in the way you described. She said she doesn't want a cure. It's quite an interesting read. Another nonverbal autistic wrote that the so-called "high-functioning" autistics DO speak for her.

Nonverbals also often don't want to speak in the usual way, but through technology.

My heart goes out to those who do not have access to technology or who aren't able to use it. I also hope that those autistics who do require that care get to live the life they wish.

BellaVita
04-30-16, 10:15 PM
I feel like some people aren't understanding what I'm saying. :( or how much this means to me. I'm literally about to cry right now, that's what this topic does to me.

Greyhound1
04-30-16, 10:39 PM
Don't want to see CoolBella cry. :grouphug: I will repeat what I got from your thread for clarification.


I'm not saying it is wrong to feel heartbroken over someone's suffering - not at all. I would feel the same. My point is that it could be detrimental to the autistic community to say that autism itself is heartbreaking.

Fortune
04-30-16, 11:40 PM
My granddaughter is considered high functioning autistic, but it's doubtful that she will ever be able to drive a car, or hold a job.

No I don't find that heartbreaking, and we are doing the best we can to help her learn new things and enjoy her life.

But I have seen others with autism who never speak or find a way to communicate.

They live a life that is so frustrating that I do feel heartbroken for them.

So much depends on the severity of the disability and the kind of support that is available.

It's interesting that a lot of autistic people who eventually communicate tend to have perspectives that are completely ignored in these conversations - and they're marginalized out of the conversations by setting the bar so high that only autistic people who notionally cannot speak for themselves are referenced.

This is beyond frustrating and makes discussions difficult, because any autistic person who can communicate is basically left with the impression that their perspective doesn't count because they have access to language and/or communication.

I don't think it helps much by positioning any autistic people as "heartbreaking" because they are autistic and such language tends to be what drives the eliminationist rhetoric about autistic people (the push at all costs for a cure and/or a pre-natal test to identify autism so potentially autistic fetuses can be aborted).

More generally, disabled people tend to report quality of life close to that of abled people, and it's primarily physicians and specialists who rate quality of life lower because of disability. I don't think there's any reason to assume that quality of life for someone who cannot communicate is necessarily worse because of their autism. There are many factors that may interfere with quality of life due to family members not understanding their needs, institutionalization, bullying in school, or others that are external to the effects of being autistic.

There's a saying relevant to disability activism. It goes "Nothing about us without us." That is to say policy shouldn't be decided without feedback from the people the policy impacts - specifically disabled people in this case. Focusing on notional autistic people who cannot communicate strikes me as a way to have "something about them without them" because of course no one who brings this up ever refers to autistic people who have learned to communicate and what they have said about being autistic.

Anyway, I'm not saying there are no struggles or that no one has a hard time. I've had a plenty hard enough time because of my struggles. I just feel that the way this conversation is framed removes agency from autistic people, framing them primarily as victims of their own neurology.

aeon
05-01-16, 12:04 AM
That’s just lovely, Fortune.

I’d rep you, but the forum is keeping me on the short leash, it seems.


Cheers,
Ian

Fortune
05-01-16, 12:13 AM
The best way to make sure you can rep people when you want to is to give out lots of rep. I think that you need to give 10 or 20 rep on this forum before you can rep a person again, but it's been a few years since I tested it. I think you can only rep ten people a day, too.

BellaVita
05-01-16, 01:49 AM
Please, from the depths of my heart I ask that you all read Fortune's post #29 (http://www.addforums.com/forums/showpost.php?p=1806883&postcount=29) - she really helped to explain things that I had trouble finding the words for.

Thank you.

ginniebean
05-01-16, 04:46 AM
I hope that those teens can find a way for their voice to be heard through technology.

Speaking is overrated.

There is a blog out there by a nonverbal autistic ("severe" as you'd call it) who requires 24/7 care in the way you described. She said she doesn't want a cure. It's quite an interesting read. Another nonverbal autistic wrote that the so-called "high-functioning" autistics DO speak for her.

Nonverbals also often don't want to speak in the usual way, but through technology.

My heart goes out to those who do not have access to technology or who aren't able to use it. I also hope that those autistics who do require that care get to live the life they wish.

Bella, i get you. Speaking may be over rated and yeah nost of the crap that comes out of our mouths is likely not worth saying.

But.. communication.. is not. It's the difference between being acted upon and being able to say "I want"
I was doing behaviour therapy with a beautifil ten year old boy. Still in diapers.

I brought a bag of chips and was speakinh with his mom and he said "chop" his first word! I quickly opened the bag and gave him the whole thing. It was such a moment of joy to knkw that he for one small momeng was able to express his desire AND have it heard.

I do know what you are saying and I think there is value in difference. Having read what you've said, it strikes me, and forgive me if I'm wrong no ome ever truly empathized with you. No one was heartbroken over your suffering.

You've only experienced having to defend yourself as a child against hostility towards your difference. That defensiveness can colour things for you. It can even at times poison the well of your perception. I know it can for me.

I know that all too often the script surrounding "parent/caregivers" dominates and excludes, wails on about how much suffering they go thru, to thr point that it eclipses those actually having to deal with the effects in each moment of their lives. Yeah. It's obnoxious, rude and entitled. And so very often this script is filled with prejudice and bias. Things no civilized person would say without shame about any other difference becomes a free for all of intolerance.

These people exist, it needs push back and I'm with you. But we also need to leave room for the sadness and emotions of people who care.

Sorry if I got it all wrong and was presumptuous.

ginniebean
05-01-16, 04:52 AM
I hope that anything I've said has in any way removed agency.

I'm just a parent and I think like one. It is instinctive to be protective and want to see your offspring happy. Empathy cannot be a bad thing.

BellaVita
05-01-16, 05:45 AM
Hey ginniebean, thanks for your response. I've had to read it over a couple times to try to understand what it means, and I'm still having difficulty understanding.

I will quote part by part to ask questions and to see if I'm understanding it right/respond.

Bella, i get you. Speaking may be over rated and yeah nost of the crap that comes out of our mouths is likely not worth saying.

But.. communication.. is not. It's the difference between being acted upon and being able to say "I want"
I was doing behaviour therapy with a beautifil ten year old boy. Still in diapers.

I agree with you, communication is important.

So is listening to those trying to express things in their own way.

I brought a bag of chips and was speakinh with his mom and he said "chop" his first word! I quickly opened the bag and gave him the whole thing. It was such a moment of joy to knkw that he for one small momeng was able to express his desire AND have it heard.

I do know what you are saying and I think there is value in difference. Having read what you've said, it strikes me, and forgive me if I'm wrong no ome ever truly empathized with you. No one was heartbroken over your suffering.

For the majority of my life, I was mostly surrounded by people who treated me like crap. And no, not much empathy was sent my way.

Then I met dvdnvwls - and my life has forever changed. He truly empathized. He got it. And now I am with people who also "get it" and care and accept me for who I am - and are eager to learn about what I go through.

You've only experienced having to defend yourself as a child against hostility towards your difference. That defensiveness can colour things for you. It can even at times poison the well of your perception. I know it can for me.

This part confuses me.

I'm not sure what you are trying to say here - and I have difficulties understanding context.

But, here is how I understand what you were saying. Please correct me if I'm misunderstanding:

I don't think I'm overly defensive - more like, I feel the need to stand up for the community I'm a part of. I was treated harshly for years and I don't want anyone else to have to suffer. I don't think those feelings are messing up my perception of what was said - I literally copied and pasted the words. The words about autism being a "heartbreaking issue." I already explained this part in a previous post, so I'm going to leave that at that.

Also, I'm not sure how to feel about the "poison the well of your perception" part, I really hope I've misunderstood but it almost sounds like another way to mark over with black everything I've been saying since it must be distorted due to an inaccurate perception.

I know that all too often the script surrounding "parent/caregivers" dominates and excludes, wails on about how much suffering they go thru, to thr point that it eclipses those actually having to deal with the effects in each moment of their lives. Yeah. It's obnoxious, rude and entitled. And so very often this script is filled with prejudice and bias. Things no civilized person would say without shame about any other difference becomes a free for all of intolerance.

These people exist, it needs push back and I'm with you. But we also need to leave room for the sadness and emotions of people who care.

Sorry if I got it all wrong and was presumptuous.

I am confused about your "but we also need to leave room for the sadness and emotions of people who care."

What gave the impression that I'm not leaving room for that? I'm leaving all the room in the world open for that.

I have said time and time again, I have no issue with people expressing their emotions about people struggling.

The only big huge part I take issue with, is calling autism in and of itself heartbreaking.

ginniebean
05-01-16, 05:51 AM
I'm sorry if I've frustrated and confused you. It's really late I'll try and reply tomorrow.

ginniebean
05-01-16, 11:26 AM
Bella, I've thought and thought and I'm sorry. I think it's best if I say no more. I wish I had kept quiet.

Lunacie
05-01-16, 12:32 PM
I really do think that communication can be the make or break point.

My granddaughter may be able to talk, but actual communication is a struggle.

Even those who use computers or other assisted communication find it difficult to express their feelings.

Family has to be detectives and watch for clues.

We are able to tell when my granddaughter doesn't feel well, but have no way of knowing whether it's PMS, or a Migraine, or low blood sugar, or a sore throat, or in one case a broken arm.

BellaVita
05-02-16, 12:02 AM
Bella, I've thought and thought and I'm sorry. I think it's best if I say no more. I wish I had kept quiet.

Okay, I understand.

It's okay to speak here - I'm sorry I was so confused by the post.

Please know I'm not upset or anything. :)

BellaVita
05-02-16, 12:45 AM
Maybe this will help clarify some more:

Example sentences:

What I find totally understandable, and definitely okay with:
I feel heartbroken over the struggles my autistic daughter has.

What I find hurtful, condescending, and damaging in many ways to the autistic community:
Autism is something that is heartbreaking. [Autism is a heartbreak]

I hope that helps somehow.

BellaVita
05-02-16, 06:30 PM
Thank you all for participating.

I do feel like I've been massively misunderstood in some areas, and I do feel the need to vent some of my feelings instead of keeping them locked inside.

It really hurts that it was suggested that I'm trying to not allow someone to be heartbroken, or that I am trying to stop people from expressing heartbreak. I would think that by now, you all would know me and know that I am not like that.

It kinda felt like a slap in the face, really. It was an insult to my character.

I'm still in shock that people would rather jump to that conclusion than say "hmmm, that doesn't sound like something Bella would say - maybe we should see if we're understanding correctly."

I also feel hurt that I kept saying how this was hurting me, yet some people simply seemed to ignore that and not acknowledge I was getting hurt.

I feel like I was silenced in my own thread.

I do appreciate the support some did give, and the helpful posts that were written. It meant a lot to me, thank you. (Also, just noticed the thanks on Fortune's post which means you all listened when I said to please read it - that means a lot to me. Thank you. :grouphug:)

Delphine
05-02-16, 07:44 PM
I've come late to this thread. (ie. just tonight).

So that allows some bit of detached observation to some extent.

It is an extraordinary thread to read, from this perspective. Rereading the whole thing, from start to finish, there is HUGE insight here and much education.

As things unfold, the whole thread reads as a coming together and an understanding... despite the bumps and misunderstandings along the way.

Making room for each other is what life is all about, whether we are 'neurotypical' or marginalised in any way at all. Co-existing, while accepting each others personal strengths and personal challenges.

Life only becomes difficult when there is an 'accepted norm' to measure up to. Unfortunately this has historically been the case.

Imagine a world where every one of us is perfectly acceptable and normal just as we are... where there is no particular standard of normal.... and where the world is set up to accommodate each and every one of us. Where nobody stands out as outside of the norm in any way. Where our ways of being, and the perceptions any one of us brings to the world is just as permissible as anyone else's. Restaurants, social outlets, work environments all set up to accommodate us all, according to our personal needs and challenges.

I like to think that I might yet see that in my lifetime. Awareness is growing all the time. I like to imagine that my grandchildren will hopefully live in such a world. I like to think that that more our awareness grows, the more the old archaic systems break down and make room for everyone.

Fuzzy12
05-03-16, 11:35 AM
Thank you all for participating.

I do feel like I've been massively misunderstood in some areas, and I do feel the need to vent some of my feelings instead of keeping them locked inside.

It really hurts that it was suggested that I'm trying to not allow someone to be heartbroken, or that I am trying to stop people from expressing heartbreak. I would think that by now, you all would know me and know that I am not like that.

It kinda felt like a slap in the face, really. It was an insult to my character.

I'm still in shock that people would rather jump to that conclusion than say "hmmm, that doesn't sound like something Bella would say - maybe we should see if we're understanding correctly."

I also feel hurt that I kept saying how this was hurting me, yet some people simply seemed to ignore that and not acknowledge I was getting hurt.

I feel like I was silenced in my own thread.

I do appreciate the support some did give, and the helpful posts that were written. It meant a lot to me, thank you. (Also, just noticed the thanks on Fortune's post which means you all listened when I said to please read it - that means a lot to me. Thank you. :grouphug:)

I'm assuming that this is directed at me. I'm sorry, Bella, but I find your post above pretty infuriating. I do still think that what you said in the original thread to the poster who mentioned heart break was insensitive and unfair. You are asking for people to give you the benefit of the doubt but you didn't really give that poster the benefit of the doubt, did you? You kept insisting that she meant that autism itself is heart breaking.

I'm sorry if you find me saying that hurtful and I'm honestly not interested in hurting you but that doesn't change what I think.

And yes, I do know you. I respond to what you say and not just your statements claiming that you are something or the other.

BellaVita
05-03-16, 12:16 PM
I'm assuming that this is directed at me. I'm sorry, Bella, but I find your post above pretty infuriating. I do still think that what you said in the original thread to the poster who mentioned heart break was insensitive and unfair. You are asking for people to give you the benefit of the doubt but you didn't really give that poster the benefit of the doubt, did you? You kept insisting that she meant that autism itself is heart breaking.

I'm sorry if you find me saying that hurtful and I'm honestly not interested in hurting you but that doesn't change what I think.

And yes, I do know you. I respond to what you say and not just your statements claiming that you are something or the other.

I'm sorry you find my post infuriating. And also my post was partially talking about things you said but it wasn't just your posts that hurt me.

It still makes me feel hurt that you think I was being insensitive and unfair, especially after another autistic explained how calling autism a heartbreak is not a good thing and explained in detail what it means to us. I'm also wondering if you read Sarah's post because that really helped explain things too.

I am not asking for the benefit of the doubt at all. I'm asking for understanding.

I took their post for what it said - I read things in a literal way and I do not know how else to take things. I tried my best to read the context of their post and the words that came after it, I read it several times.

In fact I did ask questions later trying to understand what the poster meant. I was attempting to understand the true meaning. I feel like I've gotten mixed messages from that member. (Based on a number of their posts)

Did my example sentences not help?

Why is it hard to see that I have no problem with someone feeling heartbroken and in fact think it's a human emotion that needs to be expressed? I've tried again and again to explain that I am for people expressing emotions.

There is one way for the term heartbreak to hurt me.

Fuzzy12
05-03-16, 12:24 PM
Fine. Let's drop it.

Lunacie
05-03-16, 12:25 PM
Maybe this will help clarify some more:

Example sentences:

What I find totally understandable, and definitely okay with:
I feel heartbroken over the struggles my autistic daughter has.

What I find hurtful, condescending, and damaging in many ways to the autistic community:
Autism is something that is heartbreaking. [Autism is a heartbreak]

I hope that helps somehow.

This reminds me of former discussions on whether we should say "I am ADHD" or "I have ADHD."

I've tried several times to figure out why one is acceptable and the other is seen as an insult.

But it just doesn't matter to me which one you say.

I am not denying anyone's feelings on how this gets addressed, just saying I fail to see the insult myself.

Stevuke79
05-04-16, 06:36 PM
If it's heart breaking for someone then it is heart breaking. I don't think we should make them feel guilty on top of that for feeling that way or expressing it.

Also as far as I know autism can occur on quite large spectrum of functionality. I could be wrong but I can imagine that for some autistics (and their families) autism can cause more problems and more suffering than for others.
:goodpost:

For some people the impact of autism can very severe and make life nearly impossible. Sometimes autism manifests with being nonverbal or feces smearing or other truly challenging things.

There is a difference between discouraging the 'victim attitude' and judging people for experiencing the sadnes of theit struggles.

midnightstar
05-04-16, 06:44 PM
This reminds me of former discussions on whether we should say "I am ADHD" or "I have ADHD."

I've tried several times to figure out why one is acceptable and the other is seen as an insult.

But it just doesn't matter to me which one you say.

I am not denying anyone's feelings on how this gets addressed, just saying I fail to see the insult myself.

My understanding with the "I am" or "I have" thing is saying "I am" makes it sound like you are literally the illness you have and that if you didnt exist the illness wouldn't exist, "I have" just means exactly that - you have ADHD (or autism or whatever) :grouphug:

With the autism thing, it depends (imo) how severe the autism is, the more severe the autism the more "heartbreaking" it is for everyone to see what autism can do to people.

Say for example my younger brother is high functioning but as a little kid he'd have really big meltdowns if he couldn't see any of his family or anyone he knew, it took him a bit of time to figure out school is "normal" and took him longer to settle in than it did other kids.

BellaVita
05-04-16, 08:39 PM
It would be interesting if a "severe" non-verbal autistic posted in this thread, I wonder what they'd say.

I have a pretty good idea based on blogs I've read. (Written by "severe" autistics - I put it in quotes because I dislike functioning labels)

Lunacie
05-04-16, 10:26 PM
I do think there's a different perspective between people who have autism and the parents of those people who are "heartbroken" to see their loved one struggle.

BellaVita
05-04-16, 11:28 PM
I do think there's a different perspective between people who have autism and the parents of those people who are "heartbroken" to see their loved one struggle.

That I can agree with. (Hey - I appreciate the way you used heartbroken. I am just pointing this out as an example that I have no problem with in the way the word was used.)

Adenosine
05-28-16, 12:32 PM
It's interesting, because if someone invented a safe, reliable cure for ADHD, I would gladly accept it, and many people employ a stopgap measure (stimulants) in place of that very goal. But autism feels different, somehow, despite being objectively more disabling.

There are certain traits that could be seen as beneficial—intense curiosity, rote memory talents, detail-biased thinking, and savant syndrome—but the last is rather rare, and the others require the primary symptoms to not get in their way too badly. If we could flatten those other difficulties, we might achieve a way of being that could still be called "autistic" in some loose sense, but I am not certain if it would meet the diagnostic criteria any longer. After all, many of our relatives carry obsessions and minor withdrawal, but they do not all qualify themselves.

I perform far better when I embrace it on some level, but that works because it silences my perfectionism and anxiety, which are symptoms themselves. Normalcy might not be the ultimate goal, but sufficient improvement already borders on a cure, unless we wish to diagnose autism in people with minor phenotype traits.

BellaVita
05-28-16, 01:52 PM
jIt's interesting, because if someone invented a safe, reliable cure for ADHD, I would gladly accept it, and many people employ a stopgap measure (stimulants) in place of that very goal. But autism feels different, somehow, despite being objectively more disabling.

There are certain traits that could be seen as beneficial—intense curiosity, rote memory talents, detail-biased thinking, and savant syndrome—but the last is rather rare, and the others require the primary symptoms to not get in their way too badly. If we could flatten those other difficulties, we might achieve a way of being that could still be called "autistic" in some loose sense, but I am not certain if it would meet the diagnostic criteria any longer. After all, many of our relatives carry obsessions and minor withdrawal, but they do not all qualify themselves.

I perform far better when I embrace it on some level, but that works because it silences my perfectionism and anxiety, which are symptoms themselves. Normalcy might not be the ultimate goal, but sufficient improvement already borders on a cure, unless we wish to diagnose autism in people with minor phenotype traits.

Ah, you brought this old thing back to life. :)

I think sufficient improvement has more to do with society accepting us for who we are - and a HUGE part is better resources and help for autistics. (I'm not speaking of ABA therapy when I say help - I mean like helpful services/providing things that we need)

If society embraced us and had funds to help autistic adults, so that we don't feel stuck to face life without any help or support, I think that would be the ultimate improvement.

Pilgrim
05-28-16, 05:15 PM
I don't know if this helps but I have memories [of my feelings/semi-thoughts - when I was in the crib] before the age of 2 and based off those memories I know I thought the same as I do today. I was born autistic and have always been autistic.

It's not a heartbreaking issue, I'm sorry but autism isn't heartbreaking. That sounds as if autistics are a bad thing. Or a disease. We're not.


Thank you for listening.[/QUOTE]

For 7 years I worked in a practice where I worked with some autistic clients, I always found them to be warm and curious. That's why I stayed 7 years.

BellaVita
05-28-16, 06:20 PM
For 7 years I worked in a practice where I worked with some autistic clients, I always found them to be warm and curious. That's why I stayed 7 years.

Awwwww that is so sweet, that post just made me feel all good inside. :)

Adenosine
06-26-16, 10:17 PM
What would really be cool is if we could find some way to enhance the memory and concentration skills of normal autistic people in the manner of those special talents. Of course, that would only help the pride approach if it came from the innate condition on some level, even if you had to use some hypothetical drugs or therapy to get there. I wonder if the typical extreme interests could be channeled to produce them more often.

ginniebean
06-27-16, 01:45 AM
Maybe this will help clarify some more:

Example sentences:

What I find totally understandable, and definitely okay with:
I feel heartbroken over the struggles my autistic daughter has.

What I find hurtful, condescending, and damaging in many ways to the autistic community:
Autism is something that is heartbreaking. [Autism is a heartbreak]

I hope that helps somehow.
i get whst you are saying bella and I don't know if it was me whp hutt your feelings but I feel guilty just for participating in this thread and the other one.

BellaVita
06-27-16, 09:01 PM
i get whst you are saying bella and I don't know if it was me whp hutt your feelings but I feel guilty just for participating in this thread and the other one.

Don't feel guilty at all! You know what though, I also kinda felt bad in the other thread, I unintentionally stepped on toes and I was afraid I offended you, and I wanted to keep the peace so I stopped posting.

I no longer have negative feelings attached to this thread, it's just stuff, and I'm so happy about my life that anything that was said in this thread doesn't affect me anymore. :)

Like, my ADHD part of my brain doesn't let me grasp onto emotions for forever with things like this, so it fades away and I feel happy again. If that makes sense.

I hope everything is cool between us and that you can feel well again too. :grouphug:

ginniebean
06-28-16, 03:12 PM
All cool here :) I can have foot in mouth and not know it. I can unintentionally be hurtful. If it happens let me know. :)

hutchie0109
09-08-17, 11:26 PM
You missed out it's just rubbish, that's the polite version.

wonderboy
09-09-17, 03:07 AM
https://youtu.be/inxIM1aGvZY

Batman55
09-11-17, 12:10 AM
https://youtu.be/inxIM1aGvZY

He makes some good points about breaking down the stereotypes.. and yet at the same time he appears to have unusually fluid speech and a "presence" that I typically associate with NT speakers.

Perhaps vocal disfluency is another stereotype (which I have) that I'm thrusting on him?

At that age--I read 15?--I wouldn't have been able to even understand the material he wrote for that speech, let alone present it with such confidence. So, again... envious.