autism-experts

Feeling like a lab rat.

Looking for scholarly sources about why ABA is severely damaging to autistic people… Finding very little. 

Everyone has studies about how to “fix” autistic people, no one seems to have done any studies about how autistic people feel or whether what’s being done to us hurts us.

But we’re the ones who lack empathy.

If you know of any studies done or “authorities” or “experts” who have spoken against ABA being done to human beings, particularly autistics, please let me know. I have to write a scholarly letter describing this point and the experiences of actual autistic people WILL be considered less valid than the opinions of Non-Autistic “experts”. As usual.

*Screaming inside*

Check Your Advocating Attitude

Check Your Advocating Attitude

Let me start with an admission. As a parent of a child with autism, I hold very strong convictions and opinions when it comes to raising and educating my children. Anyone who has worked with me and/or my son, will attest to that fact. At times, I have been strong-willed, determined and persistent. Indeed, I knew my son best. I knew a lot about autism in general and his autism specifically. I had…

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If you’re having trouble figuring out why your child is engaging in some form of disruptive behavior, there’s a list of very common causes to help you out on the data sheet. Once you have your data form filled out, you’ll probably see a pattern that can be explained by one of the following possibilities. 

– To Avoid a Task –
– To escape from a task –
– To get attention –
– To get something [they want or need] –

– RULE OUT A SIGNIFICANT PHYSICAL CAUSE FOR THE BEHAVIOR It’s important to rule out any serious physiological cause that could be underlying the disruptive behaviors before you start out on a course of interventions. Some physiological conditions, such as an ear infection, a cold, or a headache, can cause pain or discomfort and lead to disruptive behavior. For example, sometimes a young child with a bad ear infection will bang her head against the railings of her crib. Allergies can also result in some types of self- injury, such as repetitively picking at itchy areas of the skin— scabs form, and the child may pick at those until there’s a cycle of never- ending sores. Other painful situations like a cold, headaches, or even PMS in adolescents may cause temporary increases in problem behavior. Obviously, you’d want to take care of the physical problem in all these cases, rather than leaping ahead to behavioral interventions.

— 

Lynn Koegel, Overcoming Autism

When I first read this list of “reasons” autistic people have meltdowns, I almost threw the book across the room. I was alone, so my reason couldn’t have been any she mentions here. Oh yeah, I was having a PTSD-like reaction to finding out what the author of the book thought of me when I started screaming and banging my head in her presence. 

Which was because she had just:

Ignored everything I said about fluorescent lights making it impossible for me to think
Ignored everything I said about being unable to talk to more than one person at a time
Told my cognitive interpreter to stop “talking for me” and let me talk, even though I could neither talk nor type at this time, and even though I was indicating that my cognitive interpreter was expressing my thoughts perfectly well. 
Ignored, for the billionth time, everything we said about how we wanted help teaching me daily living tasks, and instead insisted all I needed was help with social skills because autism was a social disorder not a daily living skills disorder
I was starving and she refused to acknowledge it
But somehow “being completely at the end off my rope after trying hard for weeks to communicate the truth” was not among Lynn Koegel’s possible reasons for a meltdown. Neither were sensory issues or starvation. I’m pretty sure she doesn’t even believe in sensory issues as a significant part of being autistic. I’ve talked to other adult auties whose interactions art her autism center were just as frustrating. 

The only good thing I got out of going there was her telling me I clearly met the criteria for autistic disorder and should get my shrink to validate that with a diagnosis other than PDDNOS, presuming everything I told her of my history could be verified by my parents (it was, easily, and I got a fax with the new diagnosis within days).  But I had been told that before so I think it would’ve happened even without her. 

Oh she was also the one who told me that if we worked on my “anxiety problems” I wouldn’t need to communicate by keyboard as much. Anxiety was the only concession she made to the concept of overload. And it wasn’t much of a concession.  I had just barely heard of autistic catatonia. So I couldn’t explain to her my speech had been getting less reliable for years by then, and that the more I learned to truly communicate, the worse my speech got. In this book I am finding out she doesn’t like AAC devices except as a last resort, and likes to force autistic children to speak at all costs.  Even AAC is only a bridge to speech for her. 

When I finally had my massive meltdown because I’d reached the end of my rope, she took me to a counselor where she and other people explained my behavior and I couldn’t understand a word they said except towards the end, when everyone agreed I did not belong on a university campus.  Which meant when I visited MIT years later (as an honored guest) I kept waiting for someone to throw me out. There’s other problems with MIT but that’s beside the point. 

I have very little respect for anyone who makes their living off autistic people, but won’t listen to us, won’t allow cognitive interpreters, won’t believe in sensory issues, and can’t understand how we could lack daily living skills. Also anyone who thinks the only reason for intermittent speech is anxiety and thinks she can tell at a glance in five seconds of meeting someone, that they have no academic problems (I had nothing BUT academic problems at that time).

Oh and next time an autistic person came took that university they were told “We had someone like you recently. It didn’t work”.  Grrr. 

Who are the true experts on Autism?

Who are the true experts on Autism?

People still debate about how much is actually known about autism.  There are always stories in the news about what may cause autism, and how exactly it is defined. And even recently things such as the female profile have revolutionised autism, and autistic people.  But what really makes an expert on autism?  Some people claim that professionals know best, while others say that to be an expert on…

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archiveofourown.org
Autism isn't a tragedy! - Cyndi - Guardians of the Galaxy (Movies) [Archive of Our Own]
An Archive of Our Own, a project of the Organization for Transformative Works
By Organization for Transformative Works

The link goes to archiveofourown.

This is my nonverbal autistic!Groot series. I’m an autistic fanfic author. This is autism from the INSIDE.

These fics exist to tell other autistic people that it is okay to be your beautiful autistic self. I’ve found that feeling and I want to share it. My fics in no way reflect the experiences of every autistic person out there, however they all involve portrayals of autism that aren’t treated like a tragedy even when the bad sides of it are shown. You won’t see Groot overcoming autism. Nope, you’ll see him overcoming neurotypical/allistic ideals that he has to fit in to be accepted.

I truly hope reading my fics helps people realize four things: Functioning labels are useless, it’s important to presume competence, autistic people aren’t tragic burdens and our voices matter. Don’t listen to what Autism Speaks “experts” say about autistic people. The only true autism experts are autistic people themselves and they are the ones who need to be heard.

You’re welcome to visit autistic!Groot here on Tumblr. He blogs like any other user as nonverbaltree.

Btw, he hates Autism Speaks as much as I do. ;)

Reading Lynn Koegel, which means ranting here periodically.

She says that autistic children who ‘tantrum’ are used to getting their way when that happens, and don’t want to communicate in more understandable ways because they can get all their needs met by ‘having a tantrum’, and therefore parents will have to push through that in order to teach their children ‘real communication’.

Actual research?  Shows autistic kids only resort to tantrums after multiple attempts at communicating in less disruptive ways have failed because the people around them don’t see their actions as commmunication for soe reason (probably many reasons).

If I continue reading this book, expect further ranting.  I read a previous edition of this book years and years ago and was flabbergasted at her lack of basic knowledge about sensory issues. Although it explained a lot about her interactins with me.

As someone on the autism spectrum (I hate that I have to preface my post this way), I truly find it lolz-worthy that people are telling the SU fandom that we are not allowed call Onion creepy because he (might) be autistic. And these posts are mostly coming from people who are like “I know a kid that has autism and he’s just like Onion” (because of course knowing a kid with autism makes you an expert on autism).

And it’s like okay, but Onion has tried to kill Steven and the gems and the crewniverse has purposely made him sinister in some parts????

Like yeah, Onion definitely has a lot of behaviors in common with some (NOTE: SOME) autistic people but that does not give him a free ride to be a cinnamon roll. He does things that are unsettling. Sure, some of those things like licking a glob that looks like Steven or showing a video of your mother giving birth to you are certainly weird but not necessarily harmful, but are we just going to ignore that Onion has stole from Steven, put him in stressful situations, and tried to KILL him?

I’ve already addressed how I have mixed feelings on Onion being autistic exactly because he is problematic and paints an image of autistic people as being violent! but misunderstood!!! Sure, Vidalia isn’t a conventional lady but she doesn’t seem like the kind of mom who would leave her son unpunished for, I don’t know, trying to throw a car on someone with a stolen magic weapon. Onion’s behavior is calculated-he specifically behaves this way in front of Steven when no one else notices-and THAT is what is creepy about him. He’s not like Ronaldo who is just quirky with no level of awareness if he’s going over the top. Onion is very aware that his behavior gets Steven’s attention, even if it is negative. And perhaps he truly does want to be Steven’s friend and the only way he knows how is by upsetting him. But that’s still not cool. It’s harassment, which some autistic people who don’t know any better tend to do. That still doesn’t invalidate their victims’ discomfort or trauma (in more serious situations of course). It’s like when people give autistic men a free ride for stalking women or repeatedly harassing them to get their attention. Although the autistic person may not know any better, it still does not excuse that behavior.

So autistic or not, yes, I am still going to call Onion creepy, even though I myself am on the spectrum. Autistic people can be creepy, although I would be disappointed in Rebecca if this was the sole representation of an autistic person she had on her show.

welcome to my new blog!

I’m hoping this will be helpful for anyone who is autistic, has an autistic friend or family member, or wants to learn more about autism in general

disclaimer: keep in mind that everyone experiences autism differently, so what applies to me may not necessarily apply to someone else

I’m not an autism expert, but I’ve lived with it for 29 years and continue to learn more each day.. I am very grateful to those who have helped me along my journey and I hope I can do the same for others!

anonymous asked:

clearly the anons are the Autisms Experts with degrees and shit and know that every single autistic person ever is clearly identical. Every single one. theyre not allowed to have other struggles because All The Autisms© are obviously the same!

The One And Only Single Autism

Alone? Frightened? Worried?

“No one knows how to help us.”  This was what I once said to my husband.  It was many years ago.  So many, I no longer remember the year.  Along with that realization was this one – “We are in this alone.”  And while, at the time, that thought terrified me, it was the beginning of finding another way.  It was the moment when I realized all these people we were looking to for guidance, didn’t know…

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archiveofourown.org
Autism isn't a Tragedy! - Guardians of the Galaxy

The link goes to AO3.

This is my nonverbal autistic!Groot series.

These fics exist to tell other autistic people that it is okay to be your beautiful autistic self. I’ve found that feeling and I want to share it. My fics in no way reflect the experiences of every autistic person out there, however they all involve portrayals of autism that aren’t treated like a tragedy even when the bad sides of it are shown. You won’t see Groot overcoming autism. Nope, you’ll see him overcoming neurotypical/allistic ideals that he has to fit in to be accepted. 

I truly hope reading my fics helps people realize four things: Functioning labels are useless, it’s important to presume competence, autistic people aren’t tragic burdens and our voices matter. Don’t listen to what Autism Speaks “experts” say about autistic people. The only true autism experts are autistic people themselves and they are the ones who need to be heard.

You’re welcome to visit autistic!Groot here on Tumblr. He blogs like any other user as nonverbaltree.

A Tale of Three Experts

The following post was taken from my old but not-quite-defunct blog, Ballastexistenz.  It was originally posted on March 13, 2007.  Here is a link to the original post.  All words beyond here are the post itself, reproduced in full:

The following is a story I wrote based on an explanation I gave to someone who wanted an easy-to-visualize metaphor of how strange and arbitrary the designation of things like “kinds of autism” and “severity” and stuff are when performed by the average diagnostician/etc. It’s also relevant to my last post about assumptions.

Once upon a time, there were three renowned autism experts: Dr. Johnson, Dr. Smith, and Dr. Shaw. Through meticulous research, they had noted that most autistic people had animals living in their homes with them. Level of function was determined by the amount of iguanas and canaries in a person’s home: five was mildly autistic, ten was moderately autistic, fifteen was severely autistic, and twenty was profoundly autistic. They carried out their assessments of the presence of autism and level of functioning by visiting homes and counting the animals. In reality, the presence of any animals living in the home signaled autistic traits, but the experts were – being non-autistic and Very Professional – overly focused on unimportant details about autistic people.

The first person they assessed was named Julio. Julio had five canaries, ten iguanas, and five pigeons. Dr. Johnson was best at noticing canaries, so he wrote down that Julio was mildly autistic. Dr. Smith was best at noticing iguanas, so she wrote down that Julio was moderately autistic. Dr. Shaw was good at noticing both, so xe wrote down that Julio was severely autistic.

Next, they assessed Jane. Jane had five iguanas, ten canaries, and five ferrets. Dr. Johnson wrote down that Jane was moderately autistic. Dr. Smith wrote down that Jane was mildly autistic. Dr. Shaw wrote down that Jane was severely autistic.

Then, they assessed David. David had twenty iguanas. Dr. Johnson wrote down that David was not autistic at all. Dr. Smith and Dr. Shaw agreed that David was profoundly autistic.

Now they came to Kazuko’s house. Kazuko had twenty canaries. This time it was Dr. Johnson and Dr. Shaw that agreed Kazuko was profoundly autistic, and Dr. Smith who believed that she was not autistic at all.

The next person on their list was named Geoffrey. Geoffrey had nineteen canaries and a tarantula. Dr. Johnson was terrified of tarantulas, but did not want to tell anyone that. He pretended to have assessed Geoffrey and found him not to be autistic. Because he disliked being at Geoffrey’s house so much, though, he wrote down that Geoffrey had a personality disorder that was extremely hard to treat and outside his specialty. This ensured that he would never have to see Geoffrey again. Dr. Smith was not afraid of tarantulas, but because she did not see any iguanas she concurred that Geoffrey was not autistic. Dr. Shaw noted all the canaries and said that Geoffrey was profoundly autistic.

Next came Helen. Helen had fifty cats. The three doctors agreed that Helen was not autistic at all.

Alex’s house had three canaries, five iguanas, a hamster, a pig, four ferrets, a dog, three mice, and two boa constrictors. Dr. Johnson wrote down that Alex had a few autistic traits and might have Asperger’s or PDD-NOS. Dr. Smith wrote down that Alex was mildly autistic. Dr. Shaw was extremely interested in ferrets, and spent xyr entire time at the assessment playing with and watching the ferrets. To make up for lost time, xe wrote that xe had found that Alex was not autistic at all but had several highly interesting neurological traits that were worthy of further study. This was so xe could come back and play with the ferrets.

Penelope had eight canaries, eight iguanas, a rabbit, a ferret, a bear, and a bonded pair of rabbits. While Dr. Johnson would have otherwise written that Penelope was approaching moderately autistic, he was fascinated by rabbits. He spent his whole time hanging around with the rabbits and forgot to count the canaries. He wrote instead that Penelope was highly gifted because she had rabbits in her house. Dr. Smith would have also written that Penelope was hovering around moderately autistic, but she took one look at the bear and ran off screaming. She wrote that Penelope was an extremely disagreeable person with behavior problems, but not autistic. Dr. Shaw played with the ferret and wrote Penelope up, like Alex, as deserving further study for interesting neurological traits.

arethafranklin asked:

I read one theory that Onion is on the autism spectrum and I think it's a likely possibility.

I’m not so sure about that. I know quite a bit about the spectrum and I’m on it myself, and he doesn’t really exhibit any of the symptoms (except maybe being a picky eater? idk). Autistics are hard to understand but our behavior usually has a purpose. Onion is just weird (see: carrying a mouse around in his mouth for a good seven minutes or so). I think he’d have to be pretty low functioning and even then I just don’t really see it. I mean, I’m certainly no expert in autism so I could be wrong but think this might just be a case of tumblr seeing representation where there is none, which is something tumblr does a lot.

archiveofourown.org
Autism isn't a tragedy! - Cyndi - Guardians of the Galaxy (Movies) [Archive of Our Own]
An Archive of Our Own, a project of the Organization for Transformative Works
By Organization for Transformative Works

The link goes to archiveofourown.

This is my nonverbal autistic!Groot series. I’m an autistic fanfic author. This is autism from the INSIDE.

These fics exist to tell other autistic people that it is okay to be your beautiful autistic self. I’ve found that feeling and I want to share it. My fics in no way reflect the experiences of every autistic person out there, however they all involve portrayals of autism that aren’t treated like a tragedy even when the bad sides of it are shown. You won’t see Groot overcoming autism. Nope, you’ll see him overcoming neurotypical/allistic ideals that he has to fit in to be accepted.

I truly hope reading my fics helps people realize four things: Functioning labels are useless, it’s important to presume competence, autistic people aren’t tragic burdens and our voices matter. Don’t listen to what Autism Speaks “experts” say about autistic people. The only true autism experts are autistic people themselves and they are the ones who need to be heard.

You’re welcome to visit autistic!Groot here on Tumblr. He blogs like any other user as nonverbaltree.

Btw, he hates Autism $peaks as much as I do. ;)