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Posts tagged autism

9,856 notes

Why I am against Autism Speaks (made rebloggable by request)

transstingray:

goldenheartedrose:

Autism Speaks is the most well-known charity autism charity.  Just because they have the most media coverage and celebrity support does not mean they are a good organization.  

  • Autism Speaks does not have a single autistic member on their board.
  • Autism Speaks only spends 4% of their budget on “family services”.
  • The majority of Autism Speaks’ money goes toward research, and the majority of that research is to find a way to rid the world of autism, and thus, autistics.
  • Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
  • Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter.  This has now be removed from Autism Speaks’ Youtube channel but can still be found elsewhere.
  • Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film comparing autism to cancer, AIDS, and blaming autism as the reason why marriages break up.

In short, Autism Speaks makes it much harder for those of us who have autism to be taken seriously.  Autism is considered to be a child’s disease (not that it’s even actually a disease at all), and you will often hear people say “where are all the adult autistics?”  Well, we’re right here in front of you.  We may have been misdiagnosed with learning disorders, mental retardation and other mental illnesses when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now.  We vary in where we fall on the spectrum.  Don’t make assumptions about us because we can use a computer.  

For further reading, here are a few resources about Autism Speaks:

Why Autism Speaks is No Good for Autistics. 

Autism Speaks Does Not Speak for Me.

I’m Autistic, But Autism Speaks Doesn’t Speak for Me.

An Autistic Speaks about Autism Speaks.

A Chart Regarding Autism Speaks’ Allocation of Funds

Editing the original post so that I can include which Autism related charities to support.  Let me say that besides the first one, all of them are very parent-oriented organizations, meaning that adult autistics may have issues with them.  These are ones that I have either heard recommended highly by autistic parents (meaning autistic people who are parents, not “autism parents”) or that I’ve personally interacted with.  None of them are perfect, but these are far better places to donate your money if you’re looking for a charity to support.

Autistic Self Advocacy Network

The Doug Flutie Jr. Foundation for Autism

The ARC (this is not autism specific, but our local one has a couple of autism-specific events, so was worth including).

ASAN Flyer about Autism Speaks

Edited 9/13/2012 to include this link, which is a news segment about a mother whose job offer with Autism Speaks was rescinded after she asked for accommodations in regards to caring for her autistic son.  She later resolved the issue with childcare, but they rescinded their offer anyhow.

every once in a while i reblog this

(via fracturedrefuge)

Filed under autism autism speaks actuallyautistic

15 notes

Almost half of teens with autism bullied: study

Close to half of all teenagers with an autism spectrum disorder are bullied at school, says a survey of their parents.

The results, published Monday in the Archives of Pediatrics & Adolescent Medicine, suggest that rate is much higher than the estimated 11 percent of bullied kids in the general population.

It also says that anti-bullying measures are not tailored towards vulnerable populations, like those with ASD, and are largely ineffective. No crap.

Filed under actuallyautistic autism bullying

164 notes

codeman38's tumblings: What an auditory processing deficit looks like

aspergersissues:

codeman38:

sofriel:

These are some of the things that I have difficulties with. If you know me offline, this might be relevant to your interactions with me, I guess. 

Reblogging this, with my own commentary interspersed, because your auditory processing issues seemincrediblysimilar to mine.

  • Distinguishing sounds- I have trouble distinguishing rhyming words, even when they’re spoken in isolation. Bat, hat, that…I have trouble hearing the difference. So when listening to people, I end up hearing something like this “What xxxx you xxxx tonight? I wanted xxxx with xxxx so we’re xxxx downtown.” I have to try and fill in the blanks. Sometimes I’m able to. Often I’m not - when that happens, sometimes I ask for repetition, but sometimes I try to just get it from context, which can cause confusion.

I hadn’t really thought about it, but I have this issue to some extent as well. For me, it’s especially bad with /s/ vs. /f/ vs. /θ/ (sail, fail, *thail) and with /h/ vs. /p/ (hop, pop) at the start of words. Lip-reading helpsa lotwith this for me.

  • Remembering things told to me orally- it’s reeeeally hard. I have to focus intensely to remember stuff people say to me. And anything longer than a single sentence is basically hell to remember. 

I totally have this problem. And of course, people always think that I’m exaggerating when I say I need to write things down when I’m being given oral instructions. No, I knowfrom experiencethat I need to write them down!

  • Actually processing what was said to me - one thing I do a lot is saying “what?” right after someone says something to me, and then immediately following it up with a response. My mom hates it, says I shouldn’t say “what” if I actually know what was said. The problem is that when Idohear things, it takes me a little longer to actually understand what they mean and how I’m supposed to respond. 

Yep, I know this as well. I’ve actually had a few times where someone said something to me and it took several seconds before it finally dawned on me what those noises actually meant. And in the meantime, I’m just staring blankly while the little cogs turn around in my mind trying to make sense of it…to say nothing of formulating a response that actually makes sense once I do decipher what was said…

  • Understanding anything with background noise- my sensory gating abilities (aka the cocktail party effect) are almost nonexistent. Because of bullet point #1, I have trouble understanding speech normally, but when you addanybackground noise, it becomes almost impossible. It doesn’t even have to be loud. Talking while music is playing, for instance. Doesn’t work, and I feel rude asking people to turn off the music (if that’s even an option). If we’re in a loud environment, you should probably just assume I can’t understand you at all and would be better off switching to ASL or writing. 

SO MUCH THIS. I seriously do not understand how people can socialize at all in most environments that supposedly are designed for socializing. This was pretty much my downfall at a conference I went to last month; I loved all the academic presentations and stuff like that, but I couldn’t stay in the poster rooms for too long at a time because so many people were all talking at once, and the social events, held at places with pop music blasting loudly and hundreds of people all talking at once on top of it, were absolutelyhellish.

This is also a large part of why I watch TV and movies with subtitles. Actors have a tendency to mumble these days, but the sound mixing folks don’t help by making the background music and ambient noise as loud as the actors!

  • Noticing when people are talking to me- for some reason, I have a hard time with this. I think it’s partly also because basically no one actually talked to me in elementary and middle school so I’m not used to the idea of people approaching me. But yeah, it’s tough to tell when I’m being addressed, plus when someone speaks to me and I’m not expecting it, it’s almost guaranteed that I didn’t understand what they were saying.

This has happened to me several times as well. But from two different directions.

I’ve also experienced the thing where I didn’t notice that someone was trying to get my attention. A lot of times, it’s just that I thought the person was addressing someone else near me, and they only made it clear when I didn’t respond. But on more than a few occasions, it was a situation where they were very clearly addressing me, not someone vaguely near me, and my brain just didn’t manage to decipher the speech— it’s like my brain was in some sort of non-speech processing cycle until kicked into gear.

But then, I’ve also had the opposite situation— thinking that someonewastalking to me when they actually weren’t. The one scenario where I remember experiencing this sort of thing a lot was in gym class; suffice it to say, “Coach” and “Cody” soundverysimilar when you’ve got screwy auditory processing.

  • Phones? I never associated my problems using phones to my auditory processing deficit before but now I wonder if that’s part of it. Anyway, I have extreme difficulties having phone calls with anyone I am not extremely close with. It causes me seriously debilitating anxiety.

Yep, same here. I can manage it to some extent with people whose speech patterns I’m familiar with (though it’s still far more exhausting than talking in person because of the lack of coping strategies), but I havelotsof misunderstandings and just general incomprehension whenever I have to call a stranger.

This is partly because there’s no visual feedback. A lot of the time, I fall back on things like lip reading when I’m dealing with an unfamiliar speaker. But of course, I can’t do that on an audio-only medium!

But that’s not the whole story either, as I’ve done OK with unfamiliar speakers in things like radio interviews. The bigger problem, for me, is the horrifically low frequency cutoff on phone lines. Remember all those consonants that I mentioned having trouble distinguishing? Much of the frequency range that distinguishes them is entirely beyond the high-pass filter applied to sounds coming over the phone. Even people with normal auditory processing have great difficulty telling over the phone whether someone is “sailing” or “failing”. (There’s actual published research on this!) And that’s assuming a good mic on the other person’s end; sometimes I’ve had to talk to people on the phone whose speech sounded like a cross between mumbling and Charlie Brown’s teacher from the Peanuts specials, because their phone’s microphone was so poor.

I’m rebloging this for the phone part. I’ve never hear this explained so well before. I have the same issues and could never verbalize why.

Filed under autism actuallyautistic GPOY

21 notes

goldenheartedrose:

girljanitor:

goldenheartedrose:

myloveforautism:

It was 1 in 110 in 2011 now it’s 2012 and it’s 1 in 88 Are you Autism Aware ? #autismawareness #aspergers #proudautismmom #aspiemom #myloveforautism #myloveforautismboutique #autismangel #autism ❤💙💚💛 (Taken with Instagram)

Woo! More comparing autism to life-threatening diseases!
I don’t believe there was that big of a jump from 2011 to 2012. It was simply that we were operating on old numbers (from 2008?), so that’s what it seemed like.
Higher rate = more accurate diagnoses.

individuals=/=
childhood
juvenile
pediatric
INFANTILIZE MUCH???????

That too. There are many of us who are finally obtaining diagnoses, answers as adults and are included in this stat (along with adult autistics who were dx as children). I hate the way only kids are mentioned in these discussions.

Didn’t you know? There are no autistic adults. Autistic children simply transform into beautiful butterflies and fly away on their eighteenth birthdays.

goldenheartedrose:

girljanitor:

goldenheartedrose:

myloveforautism:

It was 1 in 110 in 2011 now it’s 2012 and it’s 1 in 88 Are you Autism Aware ? #autismawareness #aspergers #proudautismmom #aspiemom #myloveforautism #myloveforautismboutique #autismangel #autism ❤💙💚💛 (Taken with Instagram)

Woo! More comparing autism to life-threatening diseases!

I don’t believe there was that big of a jump from 2011 to 2012. It was simply that we were operating on old numbers (from 2008?), so that’s what it seemed like.

Higher rate = more accurate diagnoses.

individuals=/=

childhood

juvenile

pediatric

INFANTILIZE MUCH???????

That too. There are many of us who are finally obtaining diagnoses, answers as adults and are included in this stat (along with adult autistics who were dx as children). I hate the way only kids are mentioned in these discussions.

Didn’t you know? There are no autistic adults. Autistic children simply transform into beautiful butterflies and fly away on their eighteenth birthdays.

Filed under actuallyautistic autism

9 notes

I don’t look at people during conversations.

laughingintothefire:

There’s too much to interpret. 

Gestures, expressions, what they’re actually saying….it’s a lot of information to process. 

Often, it’s more information than I can process.

I usually look near the person, and they either don’t notice or don’t say anything.

But eye contact is just…ugh.  

This is pretty much what I do as well.

(Source: marigolds-sorry)

Filed under actuallyautistic eye contact autism sensory social skills

19 notes

tal9000:

[Image: A graphic titled “Mercury Poisoning and Autism: It isn’t a coincidence” next to a black-and-white photo of a pale-skinned blond child with short hair. It shows two columns labelled “Symptoms of Autism in Children” and “Symptoms of Mercury Poisoning in Children”. The two columns are identical: “Loss of Speech; Social Withdrawal; Reduced Eye Contact; Repetitive Behaviors; Hand-flapping, Toe-walking; Temper Tantrums; Sleep Disturbances; Seizures”]
sherlocksflataffect:

squidward-sheeran:

porn-farr:

squidward-sheeran:

libranheart:

 Click on the photo to watch the trailer for the movie ‘For the Greater Good’ or Watch it below  and pass it on also see if they’re having screenings near you.

these are symptoms but they aren’t diagnostic. also tempter tantrums aren’t a symptom of autism. >.>

temper tantrums: a symptom of childhood, actually so stop labeling them as autism symptoms, Autism Speaks/similar organizations

YEP. to label a temper tantrum a meltdown is really misleading because it makes it sound like a kid can just stop having a meltdown at will and that they’re always just doing it because of bad behavior.

Signs of mercury poisoning include:
Red palms & soles of feet
nerve pain
visual field narrowing
loss of coordination
shedding skin/hair/nails
high heart rate
profuse sweating
None of those is a sign of autism.

Wait, are seizures an autistic symptom? I mean, yes, a lot of autistic people are epileptic (probably disproportionate to the general population?), but as I understand it autism is not generally classified as a seizure-causing disorder?
Also toe-walking and hand-flapping as a sign of mercury poisoning? [citation needed].

No, autism does not cause seizures.

tal9000:

[Image: A graphic titled “Mercury Poisoning and Autism: It isn’t a coincidence” next to a black-and-white photo of a pale-skinned blond child with short hair. It shows two columns labelled “Symptoms of Autism in Children” and “Symptoms of Mercury Poisoning in Children”. The two columns are identical: “Loss of Speech; Social Withdrawal; Reduced Eye Contact; Repetitive Behaviors; Hand-flapping, Toe-walking; Temper Tantrums; Sleep Disturbances; Seizures”]

sherlocksflataffect:

squidward-sheeran:

porn-farr:

squidward-sheeran:

libranheart:

 Click on the photo to watch the trailer for the movie ‘For the Greater Good’ or Watch it below  and pass it on also see if they’re having screenings near you.

these are symptoms but they aren’t diagnostic. also tempter tantrums aren’t a symptom of autism. >.>

temper tantrums: a symptom of childhood, actually so stop labeling them as autism symptoms, Autism Speaks/similar organizations

YEP. to label a temper tantrum a meltdown is really misleading because it makes it sound like a kid can just stop having a meltdown at will and that they’re always just doing it because of bad behavior.

Signs of mercury poisoning include:

  • Red palms & soles of feet
  • nerve pain
  • visual field narrowing
  • loss of coordination
  • shedding skin/hair/nails
  • high heart rate
  • profuse sweating

None of those is a sign of autism.

Wait, are seizures an autistic symptom? I mean, yes, a lot of autistic people are epileptic (probably disproportionate to the general population?), but as I understand it autism is not generally classified as a seizure-causing disorder?

Also toe-walking and hand-flapping as a sign of mercury poisoning? [citation needed].

No, autism does not cause seizures.

Filed under autism actuallyautistic

25 notes

autisticspectrumpositives:

[Image description: A white rectangle with orange lower-case text in the upper left-hand corner “as+” and orange lower-case text in the lower right-hand corner “autisticspectrumpositives.tumblr.com”. In the center of the page, there is black text “Knowing more about a topic than your teacher”. End description.]
submitted by allecto

The instructor for my synthesizer class told me I easily could have taught the course.

autisticspectrumpositives:

[Image description: A white rectangle with orange lower-case text in the upper left-hand corner “as+” and orange lower-case text in the lower right-hand corner “autisticspectrumpositives.tumblr.com”. In the center of the page, there is black text “Knowing more about a topic than your teacher”. End description.]

submitted by allecto

The instructor for my synthesizer class told me I easily could have taught the course.

(Source: )

Filed under GPOY autism actuallyautistic