My mom just doesn't get it

[SunnyDay16]

My mom doesn't seem to have the same attitude against Autism Speaks that I have. When I told her about it advocating for a cure and how it's approach on autism is meant to spread fear, I felt like my thoughts were dismissed with her saying, "Well aren't they all like that?" "All" being the organizations.

She said they were trying their best and they wouldn't be perfect. She said that Autism Speaks spends a lot of money in their cause so therefore it must be something worth supporting..wrong. She just doesn't seem to understand that AS is an organization that not only makes mistakes, but doesn't even want to understand the true struggles of autistic people. All they want is to spread fear and misinformation to make a quick buck. I would rather die than support an organization like that.

What irritates me more is that she sometimes says she thinks she has Asperger's because she has a few quirks (that practicallly everyone has). It irritates me because she seems to think that Asperger's is really just about having a few tics or quirks. That's pretty demeaning to people who are having issues with their jobs, making friends, being bullied, being isolated, etc because of their Asperger's. It's not a teeheehee omg soooo querrrkkkyy!! thing.

I love my mom, but sometimes her willfully ignorant attitude gets on my nerves. I do get that she doesn't want to admit the harsh reality that not all autistic organizations have our best interests at heart, but it hurts a bit to have my thoughts ignored because it doesn't suit what she wants to believe.

 

[OkRad]

"It's not a teeheehee omg soooo querrrkkkyy!! thing. " That was beautifully put.

 

[Illumination]

My parents, and siblings also see Autism as something that it is not, my parents have always thought it was just "severe Tourettes", even though my Tourettes were never to the point of "severe". -- Their lack of understanding irritates me as I always hear them comment on some of my more "obvious" Autistic traits, which all of them are getting very obvious recently as I'm done trying to act "normal".

I'd have to agree with OkRad on the "It's not a teeheehee omg soooo querrrkkkyyyy!! thing" comment.

 

[the_tortoise]

She said that Autism Speaks spends a lot of money in their cause so therefore it must be something worth supporting

I don't understand her reasoning here. How does amount of money spent tell you anything about whether or not an organization is worth supporting?

Does she assume everyone shares her values, and since she would only spend money on worthwhile things, that must mean that if anyone spends a lot of money on something it must be worthwhile?

Or does she think having a lot of followers/supporters that give you money automatically means you must make some sense....like the number of people that agree with you is some indication of the worth/value/validity/correct-ness of your actions or perspective?

 

[Judge]

To me Autism Speaks is exactly what it appears to be. An organization which advocates for Neurotypical parents of autistic children. However they have never struck me as an actual advocate of either autistic children or autistic adults.

There's quite a difference, whether Neurotypical parents want to acknowledge it or not.

So it wouldn't surprise me if your mother truly believes this organization to be working in your best interest only because it functions primarily in her best interest.

 

[I love roses]

My mom doesn't seem to have the same attitude against Autism Speaks that I have. When I told her about it advocating for a cure and how it's approach on autism is meant to spread fear, I felt like my thoughts were dismissed with her saying, "Well aren't they all like that?" "All" being the organizations.

She said they were trying their best and they wouldn't be perfect. She said that Autism Speaks spends a lot of money in their cause so therefore it must be something worth supporting..wrong. She just doesn't seem to understand that AS is an organization that not only makes mistakes, but doesn't even want to understand the true struggles of autistic people. All they want is to spread fear and misinformation to make a quick buck. I would rather die than support an organization like that.

What irritates me more is that she sometimes says she thinks she has Asperger's because she has a few quirks (that practicallly everyone has). It irritates me because she seems to think that Asperger's is really just about having a few tics or quirks. That's pretty demeaning to people who are having issues with their jobs, making friends, being bullied, being isolated, etc because of their Asperger's. It's not a teeheehee omg soooo querrrkkkyy!! thing.

I love my mom, but sometimes her willfully ignorant attitude gets on my nerves. I do get that she doesn't want to admit the harsh reality that not all autistic organizations have our best interests at heart, but it hurts a bit to have my thoughts ignored because it doesn't suit what she wants to believe.

Maybe she thinks making light of things will make you feel better. Maybe she does not know it discounts you and invalidates you.

 

[Propianotuner]

To me Autism Speaks is exactly what it appears to be. An organization which advocates for Neurotypical parents of autistic children.

That doesn't sound much like autism speaking.

 

[Progster]

Unless you experience it for yourself, you can never fully understand what it actually means to be autistic.

 

[I love roses]

I’m not taking up for moms. I just wonder why I can’t get along with almost everybody. So I am trying to figure out just what these people are thinking when they ditch me because they definately never tell me. Somehow it was supposed to be obvious to me but wasn’t. I got the phrase discounting and invalidating from years and years of counselors using that phrase. I am just now making an attempt to try to learn what people may be thinking and feeling. because obviously they don’t like how I make them feel for whatever reason and they just think I’m hateful, mean, all kinds of negative things, all the while thinking i’ve been super nice.

 

[I love roses]

I do question why Autism Speaks spreads fear. I have an Autistic grandson. Nothing on there gave me anything I could use. We need an in-home caregiver to teach my daughter how to handle him and help him, like NOW! He is smashing his hands through glass windows and is 6. My daughter now thinks she has to move and leave her only support person, her boyfriend, to go to a metropolis to get help. She isn’t low income. We are moving way to slow and losing time. We are told we have to help him early but no one helps us find out how, or who, or where,nor how to afford it.

 

[I love roses]

Her doctor recommended an in home helper. But they never showed up or returned her phone calls. I told her to go back to the doctor and demand another referral.

I called one organization for Autism to get help even for myself. They said all those people are all at Comic-con and gave me some useless phone numbers to call as if we are all egg heads and happy together at some magical place creating things together are pursuing useless time wasting pusuits. In other words they brushed me off and said they were busy and had to take another phone call. This guy was a founder.
i felt like saying if he was that burned out he needed to go home.

 

[SunnyDay16]

"It's not a teeheehee omg soooo querrrkkkyy!! thing. " That was beautifully put.

lol thanks.

 

[SunnyDay16]

I don't understand her reasoning here. How does amount of money spent tell you anything about whether or not an organization is worth supporting?

Does she assume everyone shares her values, and since she would only spend money on worthwhile things, that must mean that if anyone spends a lot of money on something it must be worthwhile?

Or does she think having a lot of followers/supporters that give you money automatically means you must make some sense....like the number of people that agree with you is some indication of the worth/value/validity/correct-ness of your actions or perspective?

I don't get the reasoning either, especially since she doesn't even know what they're specifically spending money on, which apparently goes towards mostly towards research about trying to prevent and "cure" autism. That's not an organization I want to support, because it's pretty clear they're not using the money to actually help us, but to find research that scares people into donating to them.

Your second theory is pretty likely. I don't think that the amount of supporters for AS helps their case though, it just proves how gullible people can be when it comes to the fearmongering. NT people who aren't very educated on autism are the most gullible to this it seems and will just trust any "facts" that come their way without thinking it over.

 

[Judge]

That doesn't sound much like autism speaking.

Indeed. Under the circumstances it's more of an oxymoron.

More a case of "autism co-opted".

 

[I love roses]

My mom doesn't seem to have the same attitude against Autism Speaks that I have. When I told her about it advocating for a cure and how it's approach on autism is meant to spread fear, I felt like my thoughts were dismissed with her saying, "Well aren't they all like that?" "All" being the organizations.

She said they were trying their best and they wouldn't be perfect. She said that Autism Speaks spends a lot of money in their cause so therefore it must be something worth supporting..wrong. She just doesn't seem to understand that AS is an organization that not only makes mistakes, but doesn't even want to understand the true struggles of autistic people. All they want is to spread fear and misinformation to make a quick buck. I would rather die than support an organization like that.

What irritates me more is that she sometimes says she thinks she has Asperger's because she has a few quirks (that practicallly everyone has). It irritates me because she seems to think that Asperger's is really just about having a few tics or quirks. That's pretty demeaning to people who are having issues with their jobs, making friends, being bullied, being isolated, etc because of their Asperger's. It's not a teeheehee omg soooo querrrkkkyy!! thing.

I love my mom, but sometimes her willfully ignorant attitude gets on my nerves. I do get that she doesn't want to admit the harsh reality that not all autistic organizations have our best interests at heart, but it hurts a bit to have my thoughts ignored because it doesn't suit what she wants to believe.

It is indeed irritating. But bad at it is we have to allow people to have their own oppinions even if they are wrong. The only thing to do in this case is find support services for your own self that work for you and do not involve her in the search. Find what works for you and if she hounds you about “ progress” tell her you have a something that is working for you. You don’t have to explain yourself or what you are doing. We don’t have certain promises of “milestones”. We may do better in some ways but not others. No one can “fix” us. We might can grow some like any person but that’s about it. Tell her your glad she loves you and cares, that you appreciate the “ caring” part. If she is obsessed ssje her if she can care about you in some other way, not fixing.

 

[Tom]

Its been said in general, that autistics dislike Autism Speaks, and parents of autistics like it.

They and our (USA) government focus most of the money on the difficult task of identifying autism's genetic signatures. This is supposedly meant to someday lead to a cure, but in fact is more likely to end up used for eugenics, as it is for Down Syndrome today.

"Down syndrome can be identified during pregnancy by prenatal screening followed by diagnostic testing or after birth by direct observation and genetic testing.[4] Since the introduction of screening, pregnancies with the diagnosis are often terminated." (Wiki)

 

[Streetwise]

I do question why Autism Speaks spreads fear. I have an Autistic grandson. Nothing on there gave me anything I could use. We need an in-home caregiver to teach my daughter how to handle him and help him, like NOW! He is smashing his hands through glass windows and is 6. My daughter now thinks she has to move and leave her only support person, her boyfriend, to go to a metropolis to get help. She isn’t low income. We are moving way to slow and losing time. We are told we have to help him early but no one helps us find out how, or who, or where,nor how to afford it.[/QUOTE autism speaks advocates for a cure,The parents are obviously disappointed!!!!!!!!! (to the point of almost employing eugenics)that they didn't produce a neurotypical child .
When the what I would call in the loosest terms organisation started there was so much publicity about non-verbal autistic children who had a lot of comorbid conditions which they blamed on autism all of this is because they were so vain obviously couldn't cope with the fact that a child isn't a toy To worship your vanity !oh how terrible !how could a child have the audacity to not be neuro typical

 

[LearnedCoward]

What irritates me more is that she sometimes says she thinks she has Asperger's because she has a few quirks (that practicallly everyone has). It irritates me because she seems to think that Asperger's is really just about having a few tics or quirks. That's pretty demeaning to people who are having issues with their jobs, making friends, being bullied, being isolated, etc because of their Asperger's. It's not a teeheehee omg soooo querrrkkkyy!! thing.

To be fair, there are many things that I experience more strongly that neurotypicals experience a little of, like sensory overload. They might experience it in a crowded nightclub after too many drinks, but I'll even experience it in my relatively quiet office. Or they misunderstand and they think I'm talking about something else. For example, my need to plan things isn't about being a more organized person* or liking order or whatever, but it's because not knowing what's going to happen is seriously distressing to me. Then there's the stuff that NTs never experience by definition, like my being able to see music. They think I'm making stuff up when I say that.

*I am horribly disorganized in real life

I also take umbrage at the omg soooo querrrkkkyy!! thing. I'm not a geek at all, because I don't identify with any fandoms, don't like the fantasy genre, got into sci-fi late in life, don't watch television at all, and above all *am not cultivating an image so I can fit in with the Geek subculture*. I'm not doing what I do to be quirky, and there are some things that I do that are far beyond quirky.

They said all those people are all at Comic-con and gave me some useless phone numbers to call as if we are all egg heads and happy together at some magical place creating things together are pursuing useless time wasting results.

Yep. See above.

We are not all eggheads by any means. Many of us did poorly in school. We are also not all interested in the same things. For me, if I were to go down the list of stereotypes, some would fit, some couldn't fit worse, and I might have an intense special interest in something completely unstereotypical.* As for being all happy together, I have enough experience with autistics as a general group of people, groups of people as an even more general people, and the Autistic community specifically to know that that's not going to happen. Our neurotype doesn't magically make us all BFFs. There are autistics who annoy other autistics, who themselves annoy a different set autistics. Throw identity politics into the mix, and it's no wonder nothing gets done.**

*What the so-called experts don't get is that it isn't the interest, but the intensity of the interest, that makes it a special interest. It's like loving something versus liking it. Or rather, comparing the soppy happy floating-on-clouds Fluffy Pink Stupids kind of love that numbs all the misery of the world to something that you just kinda do because it's there and it's vaguely enjoyable. I may like jazz music and baseball instead of trains and vacuum cleaners, but it's how I like them that makes them special interests.
**I tried to warn them, but they didn't listen. That may be a story for another time.

 

[I love roses]

To be fair, there are many things that I experience more strongly that neurotypicals experience a little of, like sensory overload. They might experience it in a crowded nightclub after too many drinks, but I'll even experience it in my relatively quiet office. Or they misunderstand and they think I'm talking about something else. For example, my need to plan things isn't about being a more organized person* or liking order or whatever, but it's because not knowing what's going to happen is seriously distressing to me. Then there's the stuff that NTs never experience by definition, like my being able to see music. They think I'm making stuff up when I say that.

*I am horribly disorganized in real life

I also take umbrage at the omg soooo querrrkkkyy!! thing. I'm not a geek at all, because I don't identify with any fandoms, don't like the fantasy genre, got into sci-fi late in life, don't watch television at all, and above all *am not cultivating an image so I can fit in with the Geek subculture*. I'm not doing what I do to be quirky, and there are some things that I do that are far beyond quirky.



Yep. See above.

We are not all eggheads by any means. Many of us did poorly in school. We are also not all interested in the same things. For me, if I were to go down the list of stereotypes, some would fit, some couldn't fit worse, and I might have an intense special interest in something completely unstereotypical.* As for being all happy together, I have enough experience with autistics as a general group of people, groups of people as an even more general people, and the Autistic community specifically to know that that's not going to happen. Our neurotype doesn't magically make us all BFFs. There are autistics who annoy other autistics, who themselves annoy a different set autistics. Throw identity politics into the mix, and it's no wonder nothing gets done.**

*What the so-called experts don't get is that it isn't the interest, but the intensity of the interest, that makes it a special interest. It's like loving something versus liking it. Or rather, comparing the soppy happy floating-on-clouds Fluffy Pink Stupids kind of love that numbs all the misery of the world to something that you just kinda do because it's there and it's vaguely enjoyable. I may like jazz music and baseball instead of trains and vacuum cleaners, but it's how I like them that makes them special interests.
**I tried to warn them, but they didn't listen. That may be a story for another time.

Maybe it needs a thread all its own. That guy really made me mad and he would not have cared not one bit. No one seems to care about adult autism coping problems. It is as if it has not been invented. Do we have to invent it ourselves????

 

[I love roses]

Its been said in general, that autistics dislike Autism Speaks, and parents of autistics like it.

They and our (USA) government focus most of the money on the difficult task of identifying autism's genetic signatures. This is supposedly meant to someday lead to a cure, but in fact is more likely to end up used for eugenics, as it is for Down Syndrome today.

"Down syndrome can be identified during pregnancy by prenatal screening followed by diagnostic testing or after birth by direct observation and genetic testing.[4] Since the introduction of screening, pregnancies with the diagnosis are often terminated." (Wiki)

That is usually up to the parent. I know of several downs and autistics The parents knew and chose to keep theirs. But there is a vibe they are trying to eliminated non functional like euthanasia for elderly also. So your fear is founded. However there does seem to be more and more severe cases of lack of function in new autistics being born and I would like to know why as long as it doesn’t end up in eugenics or breading super races some of the weird possible options.