26 December 2012

Firework


The above lyric excerpt sums up how I feel about autism, and what this blog is really about. To me, autism is not a list of deficits to be fixed or cured, but is instead a range of unique strengths that neurotypicals like myself are highly unlikely to have. The world is a richer place as a result. I just wish more people would take the time to identify and work with those strengths.

As 2013 draws near, I am finding loads of inspiring autism stories out there. Here's the most compelling one I've seen of late. Grab a tissue, if you're anything like me you'll probably need it. :D

Autistic girl Jodi Di Piazza sings "Firework" with Katy Perry live at Night of Too Many Stars

Katy Perry tweeted this was "the most important moment thus far of what I do.” 

www.youtube.com/watch?v=QX-xToQI34I

 

07 November 2012

ADHD Goes to School, by Mark Bertin, MD

Article Excerpt:

When a child has a language delay, people tend to accept this fact at face value: Joseph is 6 but speaks like a 3-year-old. While understandably upsetting to many parents, no one expects Joseph to speak differently before he is able. There's a scramble to start services and a patient approach while allowing language to develop.

The same attitude does not hold for attention deficit/hyperactivity disorder (ADHD). ADHD is a developmental delay in a broad skill set called executive function. A huge body of research defines it as a medical disorder; neither parents nor children benefit when people suggest otherwise.

Executive function represents our capacity to self-regulate, encompassing everything from focus and impulse control to long term planning, prioritizing, organizing our lives and emotional control. It is required for social interactions and classroom learning. Imaging studies confirm that children with ADHD experience immature brain development, showing again that it's neither a child's fault, nor a parent's, nor society's.

A child with ADHD may be 6 years old but going on 3 when it comes to self-regulation. Often parents hear, or even feel themselves: He's just lazy. He needs to get his act together. He knows better. Yet inconsistency is inherently part of ADHD, with moments of clarity balanced by a perplexing inability to hold it together over an entire day. So he probably does know better -- but without typical executive function, lacks the skills of other children his age to follow up.

Link to full article:
http://www.huffingtonpost.com/mark-bertin-md/adhd_b_1517445.html

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."



29 August 2012

Proposed DSM-V Revisions

The time is drawing ever-nearer, when we will have to contend with a new set of diagnostic criteria for what will now be named "Autism Spectrum Disorder". There will be no more Asperger's Syndrome, no more Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), no more Childhood Disintegrative Disorder.


The main reason for the changes is due to advances in research and knowledge since the DSM-IV (psychiatric manual for diagnosing mental disorders) was published in 1994. For a start, there's no strong body of research evidence distinguishing High-functioning Autism from Aspergers. Even Tony Attwood says that the only difference between the two is how they are spelled.

The use of the term Autism Spectrum Disorder isn't new, it's been prevalent for some time now, used as an umbrella term by professionals the world over. Meanwhile, there are many people diagnosed with Asperger's ("Aspies") who feel that removal of their label is tantamount to stealing their identity. My son says that no matter what, he will always be an Aspie. But by the same token, he just as readily identifies with the title Autism because we have used the two terms equally in our household. Asperger's is a form of Autism, that has always been true, so we have used the language accordingly.

There is some serious concern that many people with less severely debilitating forms of autism, who might have been diagnosed under the DSM-IV, will no longer be diagnosable under the DSM-V criteria. This concern is based primarily on one study, and I have read some responses to that study which suggest it doesn't offer enough evidence to prove that point. However it's still a valid thing to be concerned about, especially if people are going to find themselves without supports and medical assistance when they truly need it.

I am still working out my own views on all of this, so I can't express a solid opinion just yet. Just as there was with ADHD, the chatter out there in the world is that Autism is being overly diagnosed at the moment (whether or not I agree with that chatter is also yet to be determined). I'm also tired of hearing about the (in my opinion fictional) "epidemic" (that's a whole other rant). So while I hesitate to state this in black and white, maybe it's possible that some people who wouldn't be diagnosed under the new criteria, shouldn't be diagnosed anyway. Then again, if people with legitimate need are left out in the cold because of poorly written criteria, that's obviously very bad.

Our pediatrician has made it clear that my son would easily still be diagnosed with Autism under the new criteria. But then he started out as profoundly affected and only after many years of sheer bloody-minded effort from many people since he was 12 months old, he then fit the Asperger's criteria, with a few additional quirks/challenges thrown in. So maybe there are other kids who find life a little less challenging than he does, but who still need help, who might not be eligible under the new criteria. That remains to be seen, but I hope that's not the end result.

I do believe the re-labelling is an important step, at least on a psychosocial level. Too long have invisible lines been drawn between different groups in the Autism community, separating children by their level of functioning, comparing and saying some are "worse off" than others. On the surface it might seem that way, but in fact all people with ASDs deserve acknlowedgement and support on their journey. Such comparison does not help anyone. Too long has this division been used as a weapon in debates about what is needed and what should be done for people with Autism. I believe the labelling will provide greater unity within the Autism communities around the world, as parents and carers as well as those with ASDs all realise they are walking the same difficult path, each with their own complicated obstacles to overcome.



The new diagnostic criteria will be as follows:


Autism Spectrum Disorder

Must meet criteria A, B, C, and D:


A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people
B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:
1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). 
2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D.         Symptoms together limit and impair everyday functioning.

http://www.dsm5.org/proposedrevisions/pages/proposedrevision.aspx?rid=94#




Other interesting articles on this subject:
http://theconversation.edu.au/dsm-v-and-the-changing-fortunes-of-autism-and-related-disorders-5071
http://autismcrisis.blogspot.com.au/2010/02/proposed-new-autism-criteria-dsm-v.html
http://www.modernmedicine.com/modernmedicine/Modern+Medicine+Now/DSM-V-criteria-for-diagnosis-of-autism-criticism-r/ArticleStandard/Article/detail/779115

16 July 2012

Listen to parents, they know what they're talking about

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Validating emotions before punishing behavior

...quoted from the Autism Discussion Page, a very useful resource.


Validating emotions before punishing behavior

When a child is upset and acting out, we tend to focus on “stopping the behavior” as our first priority. When doing so we often punish the behavior, without first understanding “why” it is occurring. Often the child doesn’t have (1) good abilities to control their emotional impulses, and (2) have good skills in handling their reaction to their emotions. So, when we punish the behavior, we are punishing their emotions as well. This tends to invalidate the child, and does not teach them a better way of handling their emotions. I often recommend that whatever technique you use to reduce problem behavior, first “acknowledge and validate” the child’s feelings, then deal with the behavior. Try starting out the intervention this way:

1. Acknowledge that the child is upset "Wow..John, you really look upset to me!"

2. Next, validate that is ok to be upset, "I understand how that you are upset because you cannot have ______ right now. That might make me upset to." This does not mean you have to agree with him, or approve of his behavior, just acknowledge and validate how he feels.

3. Finally, help the child problem solve or understand when or how he might get what he wants. Focus on what you want the child to do, not on any negative behavior.

4. If the child is too upset to talk reasonably with you, simply say "You are too upset to talk right now. That's ok, you let me know when you are calm enough to talk." Then minimize any attention given to the upset behavior." Do not try and reason with a child who is acting out. So little emotion, speak matter of factly, and only reason and problem solve once the child calms enough to talk reasonably.
5. After the child calms down enough to talk, then return to steps 1-3.

This respects the child, even if we are punishing the behavior. Focus first on the feelings, not the behavior. “It is ok to be upset, but not ok to hit.” In order to reduce a negative behavior, you need to focus on training an better alternative way of responding to take it’s place. “How do you want the child to respond” when he is upset? Sit down with the child and work together to identify alternative ways of responding. Once you identify one or more, then practice and role play the desired response, until it becomes more automatic. Then, when the child is upset, validate his feelings, and then coach him to use the response you two have been practicing. You will find that you are then “teaching” the child, rather than simply punishing the child. The child see you as a “working partner” with them, and will try harder to develop more appropriate ways of acting.

Understanding Challenging Behaviour Part 2

 ... quoted from the Autism Discussion Page, a very useful resource.


Understanding Challenging Behavior Part 2: Core Deficit Assessment

Understand the core deficits of the disability to interpret the function of behavior!

For most of us, the often extreme reactions we see in children on the spectrum can look bewildering to us. We are taught to look at the observable triggers of the behavior, and the observable effects that the behavior has, in order to understand the “function” that behavior serves. However, what we see on the observable surface is not enough to understand the function the behavior serves. We often are quick to punish, or extinguish, a behavior, before understanding the adaptive function the behavior serves the child.

It is important to understand the core deficits of the disability to understand the true functions the behavior serves (what the behavior is communicating). You have to understand the (1 sensory challenges (sensory defensiveness, overload, arousal issues), (2) cognitive deficits (inflexible, black and white thinking; difficulty shifting gears; limited ability to evaluate consequences; poor empathy, etc.), (3) emotional deficits (poor frustration tolerance, limited emotional regulation, emotional overload, etc.), (4) social difficulties (difficulty reading social cues, reading effects their behavior has on others, etc.) (5) communication issues (difficulty expressing thoughts, feelings, and perspectives) and (6) medical/biological issues (digestive, allergies, weak immune system, etc.) in order to understand the “adaptive function” that drives the behavior. Once we understand the “core deficits” of the disability, the behavior is much easier to understand. In addition, once this function is identified, then we can provide the proactive supports needed to lessen the stressors driving the behavior, and teach more acceptable, alternative behavior to serve the same function.

If your child is having problems at home, or school, make sure those who are designing strategies for changing the behavior, understand your child’s unique vulnerabilities, and core deficits, that will help explain the behavior. Until you understand how the child experiences the world, you will often misinterpret what the behavior is communicating. The two links below will take you to two documents that will help you indentify and understand some of the core deficits (vulnerabilities) that must be understood. The first (Fragile World on the Spectrum) gives a summary of the different areas of vulnerabilities and strategies to support them, and the second document, “core deficit assessment” scale, you can use to help identify the your child’s specific vulnerabilities. If you understand these vulnerabilities, then you can accurately interpret why certain events result in such extreme reactions from the child. Understand first, before trying to change behavior. This is a simple check list that is meant to identify areas of vulnerability. It is not an all inclusive list, but a summary of common deficits that will lead you to look more closely into each areas of concern.


Fragile World on the Spectrum
https://docs.google.com/open?id=1mBVbanii-njBz3NsAEJqNK8haRiarACSX3vaiRcqp392vMeDDB4EWBwMCpYH

Core Deficits Assessment Scale
https://docs.google.com/open?id=0B1DaJtXzRn91YmRlYjU2ZmUtY2Q2Yi00ZWNmLWI5MzctOThmZTk3ZjMxZDdj

Understanding Challenging Behaviour

 ... quoted from the Autism Discussion Page, a very useful resource.


Understanding Challenging Behavior Part 1: Functional Behavior Assessment

(This is the same article as the one posted earlier in the “discipline” series, except it has a comprehensive “functional assessment form” for doing assessments. This is the professional evaluation tool I use when assessing challenging behavior)

This series will go more in depth in how to incorporate a functional behavior assessment (analysis of behavior) with a core deficit assessment (analysis of the autism vulnerabilities) to get a more thorough understanding of your child’s behavior challenges. The documents that are attached are meant for professional evaluations (forms that I use), but are helpful for everyone. This first article in the series will describe the process of doing a “functional behavior assessment”.

All behavior serves a function (purpose) for the person. Behavior occurs for a reason(s). It serves a function for the child. The child may be acting out to escape or avoid something uncomfortable for him, may be doing it for the attention or reaction he gets from others, may be for stimulation when bored, or to gain something that he desires. The child may be screaming because he has no other way of communicating that he is hungry, frustrated, or in pain. He may be screaming because the demands placed on him are greater than his current skills in dealing with them. He may be screaming because he is overwhelmed by the sensory chaos of the load noises, bright lights, and strong smells in the grocery store. He may be screaming because his sister just took his favorite toy from him, or screaming because he just stepped on something sharp. Consequentially, the same behavior can occur for a variety of reasons (under a variety of conditions) and several behaviors (screaming, biting self, hitting others) can occur for the same reason (escape or avoid something undesirable).

Identifying the function(s) the behavior serves give us a good understanding of why it is occurring, the purpose that it serves for the child, what is maintaining the behavior, and some ideas of how to go about supporting the child and reducing the problem behavior. It can be troublesome to try and change a behavior before understanding the purpose that it serves the child, and the conditions under which it occurs. Reducing the problem behavior may be as simple as modifying some of the conditions causing the behavior (reduce demands, provide added support, etc.) or changing the way we react to the behavior (support rather than demand, minimize our emotional reactions, redirect, etc.). Often times we do not have to change the child at all, but modify the conditions (often our own behavior) surrounding the behavior. In other cases, we may need to teach alternative behaviors to replace the ones we wish to decrease.

When doing a functional assessment, we try to define the conditions occurring just prior to the behavior, that may be influencing (triggering) its occurrence. These conditions are usually called “antecedents” to the behavior. They set the stage for the negative behavior to occur. By tracking (documenting) when, where, what is occurring, as well as with whom, at the time the behavior is occurring, we are can identify common conditions (antecedents) that elicit the behavior. Maybe it may occur when certain demands are placed on the child, under certain sensory stimulation (bright sunlight), when left alone with nothing to do, etc. By noting these conditions each time the behavior occurs we can isolate out certain common patterns (conditions) that produce the undesirable behavior. Identifying what conditions the behavior occurs can tell us a lot about what function the behavior serves for the child (escape demands, attention, getting something, etc.) Often we can reduce the frequency of the behavior simply by eliminating or modifying the conditions (antecedents) that elicit the behavior. If we can change the conditions triggering the behavior (reduce the demands, provide more frequent attention, give frequent breaks, etc.) we reduce the need for the child to engage in the behavior. Even if we cannot eliminate or modify the conditions, we can provided added support (greater assistance) or accommodations to help the child adapt to the conditions (e.g. sunglasses to minimize bright lights). Changing the antecedent conditions triggering the behavior is often the best, and easiest, way to reduce the unwanted behavior. Change the conditions before trying to discipline the child.

We may also look at under what conditions does the behavior “not occur”. If the behavior does not occur when added support is given, then we may want to increase our support to minimize frustration. If the behavior occurs when the activity occurs in the morning, but not when the activity is in the afternoon, then we may change the time of the activity until the afternoon. If we can identify times and conditions when the behavior is less likely to occur, then we may want to increase those conditions. So, by identifying when, where, and under what conditions the behavior does occur, and when it reliably doesn’t occur, we can make major modification in these conditions.

In addition to identifying the conditions triggering the behavior (antecedents), we also want to identify the immediate effects (reactions) the behavior has immediately following its occurrence. Again we want to note what occurs (especially how people react, and what effects the behavior has for the child) immediately following the behavior (e.g. withdraw demands, reactions of others, getting something he wants, escaping situation, etc.). These are the gains, or payoffs. that the child receives from engaging in the behavior. These effects are often what are reinforcing the behavior, and increasing the likelihood that it will occur again under similar conditions. By identifying these effects we can often modify the effects so that the behavior does not provide the same payoffs for the child, thus decreasing the likelihood of occurring again under similar conditions. We may want to minimize our reaction to the behavior, if our attention seems to reinforce it, or we may want to make sure the child doesn’t get to what he wants by throwing a tantrum, or get out of doing things by acting out. Or, we may want to teach the child better, more adaptive ways, of obtaining the same effects (saying “stop” or “help”, rather than hitting, when wanting to escape a difficult demand).

As you can see, by changing the conditions that elicit the behavior (antecedents) and the effects (consequences) that occur immediately following the behavior, we can significantly modify the likelihood of the negative behavior occurring again. Most recently, the emphasis has been on identifying the conditions that trigger the behavior and building in added supports to either eliminate or modify the antecedent conditions, or providing accommodations and/or added assistance to minimize their negative effects. This way we are reducing the stressful conditions that trigger the child’s undesirable behavior.

In addition to changing the conditions, once we identify the function (purpose) that the behavior serves, we can also begin to teach other, more acceptable, behavior that can meet the same result (purpose, function). If the child chews on his shirt for stimulation to stay aroused, we might substitute chewing gum to take its place. If the child yells in class to get the teacher’s attention, he might be taught to raise his hand instead.

The following documents will provide you with a comprehensive functional behavior assessment form, that I use to evaluate a challenging behavior, a flow chart summarizing the components of a functional behavior assessment, and a power point presentation on doing a functional behavior assessment.

This link will take you to a comprehensive “Functional Behavior Assessment Form”
https://docs.google.com/open?id=0B1DaJtXzRn91OTdyZDVFTzNpT0k

Also, this link will take you to a nice flow chart for Functional Behavior Assessments:
https://docs.google.com/open?id=0B1DaJtXzRn91WnJDOGhDWkFOTDQ

Power point presentation on “Reducing Problem Behavior
https://docs.google.com/open?id=0B1DaJtXzRn91YURwV1NCdzFRbk9QSFktbmt4cXd5Zw

Different, not defective

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