28 September 2012

Fairy Tale Forgotten: I don't want to change...

Fairy Tale Forgotten: I don't want to change...

Excerpt:
"So, I stopped seeing my therapist. I didn't like break up with him or anything. I just cancelled my last appointment and I haven't been back in a month or more.

He gave me homework. Like little projects to work on and then report back to him. His most frequent one was my eye contact. He wanted me to look everyone in the eye. Strangers, family, friends, coworkers, people in cars, people who were prepping to jump off bridges, whatever. Anyone.


I can't do that.


He asked me what happens when I look someone in the eye. When I asked what he meant, he said does anyone give you mean looks, say mean things to you, or get angry when you look them in the eye? I said, well, no. He then concluded that nothing bad happens if you look someone in the eye.


Here's where he was wrong. Bad things do happen. To me. Inside me."

Click on the link above for the full story.

25 September 2012

Empathy Forum starts 29th Sep

This is such an important discussion to be having - do you have something to contribute to the conversation about empathy?

"What is empathy and how does it impact our daily lives?  Beginning 9/24, and lasting the entire week, The Guggenheim museum will be sponsoring an online forum, “The Greater Good” which will cover this complex and nuanced topic. Presented in conjunction with the exhibition Rineke Dijkstra: A Retrospective — the forum will look at empathy from many different perspectives. Perspectives will include:
  • What is empathy? 
  • How is it represented across the boundaries of species?
  • What is its influence on how we relate to one another? 
  • In what ways does technology impact empathy, in this complex and changing world?
Click for more information.


Other posts on Aspergers Diary about empathy: 


20 September 2012

19 September 2012

Respecting Autism

Respecting Autism  

An interview with Julia Bascom.
"It's important to me that people I interact with respect my stimming and echolalia as purposeful, meaningful, and communicative--celebrating my differences. It's also important to me that people remember that I am fundamentally a person, and that while autism is a fundamental and inextricable part of who I am, I'm still, by virtue of being a person, more like you than I am different. If you don't think of me as a person, you won't have any reason to value the particular ways I do humanity."
For the complete article, click here.

18 September 2012

thAut Toons

Here's another batch of the latest thAut Toons. Check out the new Pinterest page as well.



Too often, people see autism as a tragedy. 

"I'm so sorry you're autistic."
"I'm not!"




Sometimes autistic people find it hard to connect with others - but it's not always the autistic person who has a deficit. This one is possibly a little confronting for neurotypicals, but that doesn't make it less correct.

"In some ways, my autism makes me so smart that the rest of the world has trouble keeping up with my brain."




Again, in the theme of people seeing autism as a tragedy...

"Are people with autism allowed to be that happy?"
"No!"
"Maybe not, but autistic people are!"





Sensory issues can be a major barrier to communication.

"I'm sorry, but the soap you used today is hurting my nose and my eyes.
I can't hear anything you are saying."




Just because someone interacts differently, doesn't mean they need to be cured, doesn't mean that their life isn't worthwhile exactly as it is, doesn't mean they can't add value to your life.

"I don't talk. At all. But my life is worth living and I am worth getting to know."




The quiet moments are very valuable. Think outside the box a little. Why not choose a friend who doesn't talk?

"Conversation is okay. But friendship is better."





It's not all roses and rainbows.

"Sometimes it's cool to be different.
And sometimes it just makes me sad and tired."




People often equate silence with intellectual impairment.

"He doesn't talk. I wonder if there's anything happening in his head."




Artist: Landon Bryce
Images are sourced from: 
thAutcast: Aspergers and Autism Community
Facebook: https://www.facebook.com/thautcast
Blogazine: http://www.thautcast.com/

11 September 2012

Is autism an epidemic? I think not...

In the years between 2006 and now, the incidence of autism in the USA has increased from 1 in 110 to 1 in every 88 children. Does this mean we have an epidemic on our hands, or is something else at play?

I have long-held that claims of autism being an epidemic is merely sensationalist fear-mongering on the part of the media and the ever-hungry research funding machine. There is absolutely no evidence that autism is an epidemic. Rather, we have become better at describing and therefore identifying it. Some other diagnoses have also been moved across to the autism umbrella as more knowledge has become available and therapists have viewed their patients through a different lens. As well, awareness has increased significantly, and the criteria for diagnosis broadened in the early 90s, in particular by including Asperger's Syndrome.

There are a range of sensible reasons for the increase in diagnosis of autism, the greatest being awareness.



Growing awareness tends to work just like a snowball. The further it runs, the fatter it gets. So as more people become aware of something, still more people consequently become aware, who then make even more people aware - and so the awareness-snowball continues to grow.

I believe acceptance is another significant factor. The history of the politics of autism has meant that until the very recent past, parents were frequently against labelling their children. Instead, families often hid their children from doctors if they thought something might be developmentally "wrong" - and they had very real reasons to do so. That's a whole 'nother article, but the quick version is that a diagnosis often meant parents would be told they had been inadequate and could even mean that children might be removed from the home and institutionalised due to such "inadequacy". It is really only since the 1990s that this fear of external judgement has begun to diminish, and parents have instead been free  to focus their energies more on addressing the needs of their children. A diagnosis helps to do this, so people have become more pro-diagnosis as a result. My belief is that this shift has also led to a great deal more chance of a child being diagnosed, who would previously have not been.

So, the big question is...

Is Autism an “Epidemic” or Are We Just Noticing More People Who Have It?

(click to read the article in a new window)

I highly recommend this article for some insight into what's really going on, rather than buying into all that guff from the sensationalist media.

.

Media Faux Pas...

I've just added a new category on here, which is "Media Faux Pas". This is in response to what seems to be an ever-increasing problem in the media, who so often grasp at an element of the whole issue, or at fear-mongering and sensationalist words like "epidemic" and "disease" - and then spout a bunch of ill-supported or poorly described information at the general public, but claim to be stating facts.

Sometimes it's a media outlet of somewhat ill-repute, so if we have an inquiring mind, we take their comments with a grain of salt; we might not assume they are presenting us with the whole truth. Some of us might research further on information presented by a less reputable organisation. While I feel their input into the social rhetoric and their contribution to the overall hegemony can be vast, I am of the belief that in contrast, the more reputable media organisations ought to subject themselves to an even higher standard of scrutiny before they release their comments into the public arena.

A reputable media organisation reaps great benefit from that very reputation, so they need to work to deserve that reputation. They must always work to ensure that if they present something to the public, it will withstand the test of scrutiny.

This is primarily because being a reputable outlet means that most people will believe what is being said. So if the information is erroneous or presented as fact when it's not supported by relevant experts (for example), it can cause greater long term harm, because more people will see the content as credible.



Below is a very recent example from the New York Times. Here's the intro paragraph:

"So here’s the short of it: At least a subset of autism — perhaps one-third, and very likely more — looks like a type of inflammatory disease. And it begins in the womb."
Click to read on:

"An Immune Disorder at the Root of Autism"

It's an interesting article, but even that title had me worried at the outset. The title is a statement, not just an idea or a question. It puts itself up there next to the announcement of the scientific fact that autism is now found in 1 in 88 children. The author basically says he knows the cause of autism in that title. Very irresponsible, in my opinion.

Anyway, I'm not a scientist, so here's another very detailed article which goes into proper analysis of the content in the NY Times item.

Autism, immunity, inflammation, and the New York Times
"On Saturday, the New York Times online ran a piece from its Sunday Review Opinion pages entitled, “An immune disorder at the root of autism.” The piece is packed with overstatements and overinterpretations and lacks much-needed modulation and qualification. More than that, it promises a "preventative" for autism that is, pardon me, off the hook(worm)."

10 September 2012

Landon Bryce does it again

Here are three more:



Neurotypicals often forget what it must be like to be autistic and to be told that they are such a burden they need to be prevented and/or cured.

"Hush!"
"We're trying to figure out how to prevent you."





It amazes me how sometimes people think they are doing a good deed by being friends with an autistic person. A neurotypical who sees it this way seems unaware that they are telling the autistic person that autism makes them somehow less worthy of friendship, and that they should be grateful for what they can get.

To me it's like saying I am your friend in spite of your blue eyes. A statement like that immediately infers that there must something wrong with blue eyes. Who gets to make that assessment?

"I know you're autistic, but I like you anyway."
"And I like you, even though you aren't."





Quite often, neurotypicals think they know much more about autism than autistics themselves. To me, this seems very silly, because such an assumption locks us out of so much more awareness of the real issues for a real person on the spectrum. Wouldn't it be better to listen and learn in more depth?




Artist: Landon Bryce
Images are sourced from: 
thAutcast: Aspergers and Autism Community
Facebook: https://www.facebook.com/thautcast
Blogazine: http://www.thautcast.com/

08 September 2012

Person-first language - autistic or person with autism?

You might have noticed that I have started using the phrase "autistic people", rather than the politically 'correct' "people with autism". This is not a mistake on my part, but rather a definite choice based on much commentary I have read recently about what autistics would prefer to be called.

I was going to write a whole item about this, but "Mama Be Good" did a great job writing something in the past 24 hours. Her article pretty much mirrors my opinion.

You can view it here.

PS: This is my first post published from the Blogger app on my phone. Gotta love technology! :-)

07 September 2012

Do autistic people have empathy?



I've been saying this for over a decade, so to me it's not radical or new thinking, but it's certainly an idea the neurotypical world has seemingly refused to take on board.

In my opinion, the idea that autistic people have no empathy is a myth. It's a gross generalisation by a group of highly "qualified" people (eg: psychologists/researchers) who are simply guessing at the autistic experience based on outside appearance/behaviours -  instead of asking the right questions and hence finding out what it is that an autistic person truly experiences and feels.

I know, right? The irony of that description is not lost on me either.

According to those so-called experts, we're supposed to believe that all autistic people are lacking in empathy. Remember, these experts are primarily neurotypicals who base these assessments on things they can measure in a scientific, observable way, rather than on anecdotal evidence based on the real day to day lives and thoughts of autistic people (and of those who live with/care for someone with an ASD). They assess this skill of empathy based on and in comparison to the behaviours of the neurologically typical person - but of course the autistic person by definition doesn't fit that profile, so as far as I can tell, the assessment criteria are faulty.

Of course I am just the mother/cousin/niece/grand-daughter/friend/educator of autistic people. I don't have a big science degree up on my wall, nor am I a super-duper doctor or psychologist. So, if you feel the need, take my opinion with a grain of salt. But keep in mind that the opinion I express is based on my experiences and observations, plus a dash of common sense, as well as on what I have heard expressed by autistic people about themselves and their own experiences.

In which case, let's get down to what I really think. In my experience, autistic people are the most empathic people I have ever met. They are the first to pick up someone who has fallen down. In my experience they are the first to sacrifice their own needs in order to help another person. (They are frequently exploited due to this tendency.) I have been in many situations where an autistic person seems to be the only one there who cares that I might be having a negative experience. As best I can tell, it seems that autistic people are very high on the empathic scale, extremely high on the compassion scale, and in fact they seem to absorb the feelings of others even more intensely than the average neurotypical.

However, due to challenges reading body language, sometimes an autistic person won't see the signs that empathy is needed. Sometimes very intense feelings will take over when a sense of someone else's distress occurs, but the autistic person won't necessarily recognise or understand the source of these emotions. Instead of realising that they are experiencing empathic feelings, the autistic person takes the feelings on board as their own, internalises what they are experiencing. Then overwhelm kicks in - potentially leading to shutdowns or meltdowns. This is quite clearly not the same as a lack of empathy.

Conversely, it seems to me, neurotypicals lack proper empathy for autistic people, and this is measurable by how often neurotypical people assume they know, instead of asking, what the experience and feelings are of the person with autism.


For further reading, check out http://www.autismandempathy.com/

...and here's the empathy article that triggered me to write this piece:

http://www.thedailybeast.com/articles/2009/05/11/a-radical-new-autism-theory.html


...

I guess you might be autistic, but I don't think you're doing it right.

"I'm autistic, and I don't have any problem empathizing with other people. That's a myth."
"I do have a hard time with empathy. Does that mean I'm a myth?"






"I guess you might be autistic, but I don't think you're doing it right."
 


thAutcast: Aspergers and Autism Community
Facebook: https://www.facebook.com/thautcast
Blogazine: http://www.thautcast.com/

06 September 2012

How do I parent an autistic child?

20 Ways to parent an autistic person.

How do I do it? The truth is, I wing it, every day. It's not all that complicated really.

First and foremost I focus on the positives. I choose not to live in a place of self-pity, because I don't believe I have anything to feel sad about. I do think he chose the right parent, because he has strengths where I have weaknesses (e.g.: he is more assertive than me), and I have strength where he has need for support (e.g.: I have better organisational skills). I face each situation and adapt the solution to whatever the problem is in that moment. There are probably many other things I do, but below are the top 20 principles I try to live by.

1. I love him, always and unconditionally. He is so loved he gets annoyed with me! :D

2. I accept him, all that he is, both inspiring and challenging, because acceptance allows me to work with the challenges instead of wasting energy fighting them.

3. I support him - in all that he needs to do, all that he wants to be.

4. I choose to be proud of who he is. He inspires me every day, and I tell him about it - I have also taught him to be proud of who he is.

5. I am honest and realistic with him.  The world is a difficult place for him, so I am training him to be able to survive in that world.

6. I advocate for him. Every day I stand up for his rights and try to shift the negative view of autism into one where his strengths are embraced instead.

7. I give him structure and predictability. These things allow him to cope with the more difficult parts of his day.

8. I provide him with opportunities to succeed. If I don't let him try, I'll never know if he can do it.

9. I encourage him in all things - he has been taught to never, ever give up.

10. I place no limits on his abilities. He amazes me every day, why would I assume there is something he can't do?

11. I constantly expand his comfort zone. He tends to be very anxious, so I regularly push him to try new experiences.

12. I ask him questions - I don't assume I know what he is thinking or experiencing at any given moment. Even if I think I've got a situation worked out, I will check in with him to be sure I am on the right track. This requires me to always remember my humility.

13. I protect him. I don't bend to the will of others when they judge and tell me/him that we "should" be doing something differently. We do things the way they work for us.

14. I listen to him. 'Nuff said.

15. I let common sense prevail. If the simplest answer feels like the right one, that's the one we use.

16. I protect his right to have what he needs - such as hand flapping or recovery time alone.

17. I adapt where needed. He is often unable to adapt, so forcing him to do so is counter productive - in which case I see adapting to be my responsibility.

18. I back down when he needs me to. Just because I'm in charge doesn't mean I have to win every situation. And besides, is a win really a win, when it means my child suffers or the situation worsens?

19. I teach him resilience and coping skills. As much as it would be nice for the world to adapt around him, currently they do not, and there are a lot of rude neurotypicals out there. I teach him how to hold his head high in the face of their ignorance.

20. Most importantly - I laugh with him all the time. We have a life filled with giggles and joy, and we face the tough moments together, always looking to find a way to laugh off the stress.

More thAutcast

This first one is about exclusion, and refers to organisations such as Autism Speaks, who have no autistic persons represented in their executive. As an aside: recently a woman applied to work for Autism Speaks. She made it to the final round of the hiring process, then was dismissed because of her need for some flexibility around the needs of her autistic son. She is of course suing.

"If you want us to include you when we talk about autism, you have to stop acting so autistic."




To me, this next one speaks of the gulf between the limited understanding of well-meaning parents/carers and the deeply felt, frequently misunderstood or unnoticed needs of the autistic person. I also see this comic as the two standing together and telling the rest of the world to stop judging. I expect this picture probably speaks to different people in very different ways, according to what they are living every day.

"If you don't have a child with autism, you'll never understand!"
"If you don't have autism, you'll never understand!"



thAutcast: Aspergers and Autism Community
Facebook: https://www.facebook.com/thautcast
Blogazine: http://www.thautcast.com/

05 September 2012

Jacob Barnett - Extraordinary!

Check it out...

Jacob Barnett speaks on TEDxTeen (Youtube video)

"Jacob Barnett is an American mathematician and child prodigy. At 8 years old, Jacob began sneaking into the back of college lectures at IUPUI. After being diagnosed with autism since the age of two and placed in his school's special ed. program, Jacob's teachers and doctors were astonished to learn he was able to teach calculus to college students.

At age nine, while playing with shapes, Jacob built a series of mathematical models that expanded Einstein's field of relativity. A professor at Princeton reviewed his work and confirmed that it was groundbreaking and could someday result in a Nobel Prize. At age 10, Jacob was formally accepted to the University as a full-time college student and went straight into a paid research position in the field of condensed matter physics. For his original work in this field, Jacob set a record, becoming the world's youngest astrophysics researcher. His paper was subsequently accepted for publication by Physical Review A, a scientific journal shared on sites such as NASA, the Smithsonian, and Harvard's webpage. Jacob's work aims to help improve the way light travels in technology.

Jacob is also CEO and founder of Wheel LLC, a business he started in his mom's garage, and is in the process of writing a book to help end "math phobia" in his generation.

Jacob's favorite pastime is playing basketball with the kids at his charity, Jacob's Place. It is a place where kids with autism are inspired every day to be their true authentic selves...just like Jacob.

In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. At a TEDx event, TEDTalks video and live speakers combine to spark deep discussion and connection in a small group. These local, self-organized events are branded TEDx, where x = independently organized TED event. The TED Conference provides general guidance for the TEDx program, but individual TEDx events are self-organized.* (*Subject to certain rules and regulations."

Normal...?

"If you just tried a little harder, you would seem perfectly normal."
"Why would I want to?"


...and what's so good about being "normal"?
...besides, what the hell is normal? Who gets to decide that?


thAutcast: Aspergers and Autism Community
Facebook: https://www.facebook.com/thautcast
Blogazine: http://www.thautcast.com/

04 September 2012

ThAutcast

This is a bit of a plug for Landon Bryce, who is the author/artist behind thAutcast: Aspergers and Autism Community
Facebook: https://www.facebook.com/thautcast
Blogazine: http://www.thautcast.com/

Landon writes some brilliant stuff, but of late he has really grabbed my attention with his very succinct cartoon slides, designed to educate us neurotypicals about the experience of people with ASDs. He holds up a mirror to us, showing us what our words sound like to someone with autism. With just a few words Landon expresses so much, and in a nutshell manages to say some of the things I have been trying to impart for years.


Remember it's about Acceptance vs Tolerance. People with ASDs are different, not defective!

Here are some of his cartoons below (in the order Landon created them). I will continue to share others he as he produces more.


"Don't you want to help us fight autism?"
"Um... No. Not really. I'm autistic."




"Why don't you want to help autistic children?"
"I do. I just don't think you can help people by telling them they are broken."




"This is going to be FUN!"
"Somehow I doubt that."




"Excuse me, doctor? It hurts my feelings when you say autistic people like me don't have empathy."
"Are you sure? According to my research, you don't have feelings to hurt."




"Sometimes I feel good about my autism."
"How can you say that!!!"
"Autism destroys families!"
"If you feel good, you must not really be autistic."
"You are keeping children with autism from being cured!"



"Sometimes I feel bad about my autism."
"How can you say that!!!"
"Autism is evolution!"
"Bad autistic people like you hold us all back!"
"You are encouraging genocide!"




"I'm autistic and it seems rude -"
"Please use people-first language!"
" - Okay. You seem like a person with rudeness when you tell me what to call myself."




"It makes me uncomfortable when you flap your hands like that."
"It makes me uncomfortable when I don't."



"Oh. Could you stop?"




"Why do you want to put yourself down by calling yourself 'autistic'?"
"How is it putting myself down to be honest about who I am?"




"I think autism is a fad!"
"I wish ignorance was a fad."