goldenheartedrose:

soultired:

Y’know, lets not get into whether or not a cure would be good for autistic people as a whole.

How about we talk about the fact that a cure is years, if not decades away?  And that’s if a cure is possible at all, which it entirely might not be.  If it is possible, it might not be able to help autistic adults.

A massive chunk of the money that goes to autism support goes to finding a cure.  Not treatments for symptoms, not actually supporting autistic people, not giving autistics coping skills, not educating others on how to accommodate us and why accommodations benefit everyone, not even supporting families and caregivers.  Finding a cure does nothing for the problems we face right now.  Finding a cure isn’t benefiting you, autistics who want a cure.  Autism isn’t going to kill you, it’s not going to get worse.  There is no reason to prioritize a cure over everything that we could do right now, that would improve your life right now. 

That is the problem I have with Autism Speaks, with allies, and with the basic idea of a cure.  It is wasting precious time and resources that could go towards people who are suffering, who don’t have to be, not because of some nebulous possibility but because of things we can do right now, right here, if people just cared enough to stop vilifying autism and actually help autistic people.

Yes.  This is basically what it comes down to for me as well.  Why are we not helping autistic folks that exist NOW? The amount of money that Autism Speaks makes in a year is staggering.  Seriously, if half of that or even a quarter of that could be applied to something good - to assistive technology, to service animals, to training medical professionals and parents how to deal with basic things like “how to handle a meltdown” or better yet, “how to avoid your child’s meltdown triggers in the first place”.  And even better than just helping children, but helping teenagers and adults with things like job training, finding a job that won’t cause severe anxiety and meltdowns every day, communicating needs to school services and to employers rather than just praying that you won’t face discrimination because you’re different? All of these would be fantastic.

But that’s not where the focus is, and it’s pissing me off.

draggle:

We’re not operating in my generation, and yet it seems the disability parent community forgets that.  So I keep coming back to it in comparisons, which doesn’t necessarily work because times have moved on.  Maybe a lot of people are indeed stuck in their own childhoods when trying to apply life to their children.  Maybe they just don’t think their children communicate.  It’s probably a combination of both lines of thinking.

Example:  Cell phones exist.  Cell phones exist for discounted family prices.  If your child is old enough to choose to go places unsupervised, or with older children or teenagers, then your child should have a cell phone.  It doesn’t have to be a tripped-out cell phone, it just has to be a phone where necessary people like you can be spoken to or texted to.  This is a basic safety measure in today’s world.

Autism $peaks promotes tracking devices for “wandering” autistic people.  From the start, this caused such events as a gay teenager escaping abuse being tracked down, and of course his parents were praised.  ”Autistic Wandering” was added to the DSM-IV.

People wander.  Doesn’t make them lost, as the saying goes.  At any rate, kids will get lost regardless of neurotype.  What young child hasn’t wandered off in a mall or a supermarket?  Does it worry you sick?  Of course it does.  But you did it, too.  Your kid is probably hiding in clothes racks or eating free samples.  It doesn’t need to be seen as pathological.  It’s something children naturally do.  You wouldn’t consider a baby or a toddler’s lack of danger awareness to be pathological, would you?

Now, I’m terrible at maps.  But I’m good with directions if I’ve been to a place before on multiple occasions, even if I haven’t been there in years.  We just moved to a new state this summer, and I’ve been lost and my husband and friend and sister-who-visited have been lost because we’ve haven’t been here before.  Plus, my friends who have been cartographers say the maps here suck unless you already know where things are.  Even I could see the maps here suck unless you already know where things are.

Everyone gets lost.  Almost everyone who can leaves without telling people, and I’m not saying they should, especially if they’re younger, but it’s a thing people do.  Pay phones used to exist for that purpose.  Even in the rural mountainous south, pay phones existed.  Pay phones were imperfect, and “nothing” was even more imperfect, and fairly useless for nonverbal people.  But that’s not where we are now.  We have devices that cost less than tracking devices, devices that people can use to call home.  On their own free will.

The tracking devices are promoted mainly because of a belief that the number one death cause of autistic individuals is drowning.  Autism $peaks says it accounts for 91% of said deaths.  Autism $peaks makes up their statistics.  (The 1 in 88 percentile of someone being diagnosed autistic stat comes from the CDC, not A$.)

Children have wandered and, tragically, drowned.  The majority have not been autistic.  Some have.  They were young.  When I was a baby, a family friend’s baby and I were outside and he wandered into a pool and drowned.  I did not.  If you think I have great self-preservation, I was an 8 year old girl who held metal over my head in a lightning storm on a mountain because my brothers jokingly told me to.

Little ones have bad senses of self-preservation on the whole.  They’re to be protected.  They’re to be equipped for learning better.  A tracking device and a wandering diagnosis is so often used to instead stifle teaching and squash any semblances of dependence.  Repeated “wanderers” are often described as showing signs of abuse.  Hmm, wonder why that is.

My 17 year old daughter and 17 year old niece spent last week unsupervised in Cincinnati.  They have cell phones and had a place to stay.  This was good fortune for them.  I would have worried a lot more than I did if they didn’t have cell phones.

I wouldn’t want either of my nephews to do this, not at this time.  I don’t think they have enough adult skills for this type of adventure yet.  I agree with my sister that the autistic nephew should have clear identification on him, because he does not pass -  and because he has brown skin.

But I’m not going to say never.  They can learn.  Quite differently from each other, but they can both learn.  And heck, the 7 - 17 year old girls wander waaaay more than the teenage boys, and that’s part of why I trust them.  They’ve shown the worst that can happen, and it’s not so bad.  One of the 3 year olds goes off, too, and we have a swimming pool and used to live near a stream soooooo we’ve kept doors closed and are teaching her to swim.

I am sure most parents love and want what is best for their children.  The Rapunzel method isn’t what is best.  That’s been proven over and over and over.  The Rapunzel method only brings about distrust on both sides.

The wandering issue is one of the methods people use to paint Ari Ne’eman as something he is not.  He is not a villain out to let your kids drown.  All he really said on the matter was that wandering ought not to be pathologized.  He is a lot more like parents than many parents think, in that he wants to help all autistic children as best they as individuals need help.  The media intentionally portrays him as a very selfish yuppie who is only looking out for so-called “high-functioning” people, and this caused a lot of folks, myself included, to see him as such.  The ploy?  To make neurodiversity look wrong, of course.  He’s not what people say he is, and the slander he gets is darn cruel, ageist, and untruthful.

dunkelrosen:

• Here on Tumblr, we have the tag “actuallyautistic” 
• This tag, as its name suggests, are for people whom are actually autistic.
• This includes all people whom are on the Spectrum, such as Aspies, Autistics, NVLD, Rett’s, etc. If your spectrum quotient is over 25 or if you are diagnosed on the spectrum, then the actuallyautistic tag is right for you. 
• Its purpose is simple: it’s a tag so that people can easily find what people on the Spectrum think about various issues relating to them. 
• Posting using the tag “actuallyautistic” if you are not actually autistic is inappropriate, and frankly, a lie.  You are not actually autistic.  Feel free to use other tags, such as “autism”, “autism speaks”, “asphergers”, etc. 
• You do not get an exception if you are the allistic/neurotypical family member or friend of someone on the spectrum, as this does not make you actually autistic. I’m related to men, that does not make me a man or give me the right to go around saying “My dad, one of my closest family members, is a man, so I am qualified to speak about issues facing men!” 
• If parents are looking under “actuallyautistic” it’s because they want to hear the testimonies of people whom are actually autistic.  If they are smart enough to turn on the computer, they are smart enough to realize that this is the opinion of autistics only. You do not have the duty or the right to invade this tag to try and reach those parents. 
• Questions? Comments? Concerns?

malraiplayswow:

• Family member of Autistic person.
• Family member of Autistic person.
• Family member of Autistic Person.
• “Hay guise donate to my autism walk CURE AUTISM NOW!”
• Family member of Autistic person.
• Family member of Autistic person.
• Puzzle piece.
• Puzzle Piece
• CURE AUTISM NOW
• Something actually relevant to Autistic people.
• Puzzle piece

yousillyqueer:

White privilege is when the white CEO of a “charity” organization can talk about killing her autistic daughter in public and get nothing but money and sympathy thrown at her

but a poor WoC who loves her autistic child has him taken from her

agirlcalledhome:

What’s wrong with my stimming?

What’s wrong with my withdrawing from social situations? 

What’s wrong with my not understanding sarcasm?

What’s wrong with my autism?

What’s wrong with me?

These questions are all differently worded ways of saying the exact same thing; what is wrong with autism, and autistics? I’d like to know. I don’t understand why you hate us. I don’t understand why you want to fix us. Tell me. Please.