Penn State's Autism Conference Being Webcast

Thanks to Trish for the heads-up on the Autism Conference at Penn State this week. It is being webcast live for free!

Go to this page for the schedule of presentations. It would be awesome to be there in person, but I'll take vicariously from my recliner, too!

From Lisa Rudy at About.com

While autism spectrum disorders are usually diagnosed in childhood, autism does not disappear when people hit the magic age of 21. In fact, more and more adults now have autism spectrum diagnoses, and the numbers will grow dramatically over the next few years.


Despite the fact that autism is a lifelong challenge, most websites, books and public presentations about autism focus on very young children. It would be easy to get the impression that only infants, toddlers and elementary school students can be autistic!


This site has been as guilty as any in selecting far too many photos of adorable children to represent "the autism spectrum."


Now, I'd like to take a positive action to right the balance!


If you're a teen or adult with an autism spectrum disorder (or you love a teen or adult with an autism spectrum disorder), you are invited to tell your story on the Autism at About.com blog. Here are the details:


I will publish your personal story, memoir or blog post, as written, provided that it:
Is no longer than 1,000 words
Does not contain any four letter words or personal attacks
Does not contain any ads or recommendations to patronize a particular therapy or therapist


You are welcome to include up to two photos with your submission, provided that you have the rights to the image. If you do send a photo or photos, please include a caption and a credit. There's no obligation to send a photo.


Send your blog, story, or memoir to autism.guide@about.com - and I'll publish it right here. I'll let you know right away that it's up, and I'll promote it on my facebook site. You're welcome to promote as you see fit! Please write me, too, with any questions.

Summer Sunflowers (and a request for posts)

In the midst of hot summer heat (at least for a lot of us), what better than some sunflowers to add a smile.  Plus, you didn't have the brave the broiling heat to get the shots; you can sit in the hopefully air-conditioned comfort of your homes (or in front of fans), or if it's winter where you are and no flowers in sight, and enjoy the blooms.

Happy Friday, people. I hope you all have something to be joyful about. 

And don't forget those beat the back-to-school jitters posts! Even if it's old, even if it's only generally school related, please share with me and let me post it here!

Combating Autism: ONE bill that has bipartisan support

ARTS Rx : Social Skills Group Registration

ARTS Rx has open registration for our 4 week Summer Social Skills Group
Series for special needs children between the ages of 3-8. Our Sunday
program includes Art Therapy and Dance/Movement Therapy Groups. Art and
Dance/Movement Therapy provide a non- threatening medium where unique
outcomes are possible. We offer an integrated approach that combines
hands-on creative arts experiences through the modalities of art therapy
and dance/movement therapy with best-practice interventions to address
treatment goals such as: Social Skills, Coping Skills, Communication,
Sensory Integration,Attention Span, Self Esteem and Developmental Growth.

Sessions:7/31, 8/7, 8/14, & 8/21

Time:10am-11:30am

Group Size: Small groups with 8 participants maximum, Ratio of children to
staffis no more than 2:1

Price:$35 per session/Sliding Scale Fee Available/50% Discount on Sibling
Registration

Location:39 West 14th Street, Suite # 508, NY, NY 10011

Easy accessible to subways: N,Q,R,4,5,6, to Union Square, F to 14th
St./6thAvenue, OR 1,2,3 to 14th St./7th Avenue, Free Street Parking
Sundays

Individual Sessions also Available.

For Registration Please Contact :

LinaMeza-Murillo

(917)596-8517

Lina@ARTSRx.com

An interview with Rachel Cohen-Rottenberg of Autism and Empathy

An interview with Rachel Cohen-Rottenberg of Autism and Empathy.

Where does you interest in the subject of autism and empathy come from?

For a long time, I've been very troubled by the stereotype that autistic individuals lack empathy, and by the lack of specificity that people bring to the discussion. There are three kinds of empathy -- cognitive, emotional, and expressed -- and yet it's unusual to find people taking care with which one they're talking about. Much of the time, one hears generalized statements along the lines of "autistic people lack empathy" or "autistic people have impaired empathy," and most people interpret those statements to mean that we lack the ability to feel with and for other people. In my experience, and in the experience of many others in the autism community, that is very decidedly not the case.

What made you decide to create a separate blog on autism and empathy rather than just continue to discuss it on your own blog? Is this in part a response to Simon Baron-Cohen's latest book, The Science of Evil?

While I've had an interest in the subject for a long time, Simon Baron-Cohen's latest book was the catalyst for my decision to create the site. Both the book and the interviews he's done about it trouble me a great deal. While he himself acknowledges that it is very difficult to measure emotional empathy, he continues to assert that autistic people have an impairment in this area. I'm also very concerned that he considers autistic people to have zero degrees of empathy -- and that he includes that assertion in a book about various forms of psychopathy, which he characterizes as deriving from zero degrees of empathy as well.

I should point out, in fairness, that Dr. Baron-Cohen considers autistic people to have "zero-positive" empathy while psychopaths have "zero-negative" empathy, but his assertion that we are on the zero end of the scale fails to account for the fact that many autistic people, autism parents, and autism professionals report normal-to-high levels of emotional empathy, and that there is no test that can reliably measure emotional empathy at all. And for most people, the idea that we are "zero-positive" isn't going to be particularly comforting or result in greater acceptance; all it really says is that we lack empathy but do not mean harm. I work as a caregiver, and I can tell you for certain that my employers would not hire someone they believed would do harm and not intend it! They want someone with empathy, sensitivity, and responsiveness, and fortunately, they are able to see that I have all of those things. But for many people, the stereotypes loom very large.

In order to counter the prevailing mythology, I decided to start the Autism and Empathy website. It exists as a place to gather together two types of information: 1) the stories and experiences of autistics, autism parents and family members, autism professionals, and anyone else with an interest in the subject and 2) critiques of current autism theory, along with research that counters the stereotypes. The Autism and Empathy site allows people to come together and read about the subject in one place.

What bothers you the most about the research involving autism and empathy? Do you think the wrong kinds of questions are being asked?


My main difficulty with the research on autism and empathy is that it so often fails to take into consideration the nature of autistic experience. It tends to see autistic people only through the eyes of the non-autistic observer, and then interprets the results as they might be interpreted if a non-autistic person were manifesting the same responses. So, for example, if you have a child who laughs hysterically when someone is hurt, a non-autistic observer will likely draw the conclusion that the child has no empathy; after all, the observer thinks, why else would the child laugh in response to another person's pain? But if you look at the situation through the eyes of the autistic child, who has an acute experience of the sensory and emotional world, who is flooded with sound, with visuals, and with the intense emotion of the situation, and who does not have the language to describe his or her experience, then the hysterical laughter signals something very different. It is a physical response to being overwhelmed and a sign that the child is in distress. In fact, it may signal a very high level of empathy on the part of the autistic child, who may be having immense difficulty shielding from the experience of the person in pain.

Certainly, for the sake of a child's ability to navigate the world and relate to a variety of people, it makes sense to work on more appropriate responses; but for some autistic people, who have great difficulties with communication, conventional expressions of empathy aren't possible. The lack of conventional expression is not the same as a lack of emotional empathy; but, all too often, the research makes that huge, unwarranted interpretive link.

There is also the difficulty of judging cognitive empathy only from a non-autistic point of view. It's clear to me that people with similar minds and similar experiences have an easier time understanding one another's cues and guessing at one another's feelings. And, because there are more non-autistic people than autistic people, the average person is able to guess correctly more of the time. On the whole, autistics do have difficulty interpreting the nonverbal cues of non-autistic people; however, many of us do quite well at interpreting what's going on in the experience of another autistic person. When a non-autistic person generalizes that autistic people have impaired emotional empathy, he or she is showing equal difficulty in reading the nonverbal cues of autistic people and understanding our states of mind.

To me, the difficulty of reading people who are very different from oneself and imagining how they might feel is not a problem of impaired empathy. It's a problem of reaching across the divide of vastly different experience, which is a challenge for all human beings.

Do you think that a subset of individuals with autism might truly lack all forms of empathy, that the spectrum is wide and encompasses all ranges of empathy levels or do you see those individuals with autism who apparently lack empathy as being misunderstood?

Of course, there are autistic people who lack empathy, just as there are non-autistic people who lack empathy. We're human beings, after all. But I don't think that these differences in the autistic population have anything to do with where the autistic person is on the spectrum; some parents of kids on the moderate-to-severe end of the spectrum have reported seeing empathy in their children, and nonverbal autistic people who can write describe their experiences of empathy quite well.

Do you see a difference between the autism community itself and how it views autism/empathy and the larger world and how it views autism/empathy?

Very much so. The myth that autistic people are cold, emotionless robots who cannot understand or care about the feelings of others is alive and well in the larger world. Inside the autism community, though, one of the few things that most of us agree on is that this stereotype is highly inaccurate. So often, I read words from parents like the following: "When we first got the diagnosis, I was afraid that my child would never feel empathy, never care about the feelings of other people, never love me. And as we progressed on our journey, and I saw that my child feels the emotions of other people acutely, and shows care and concern, that was my first preconception to fall by the wayside."

Who do you hope will read your blog? Who do you hope will contribute to it?

At this point, my goal is for parents, family members, and autistics to come to the site and see that their experiences are not an anomaly. So far, I have obtained permission to post numerous pieces by autistics, parents, and professionals, and I've only just begun the process of collecting all the information that's out there. The site also contains links to research about autism and empathy, and to critiques of the current literature.

Ultimately, of course, I want people outside of the autism community to come to the site and see a wealth of information that dispels all the stereotypes they've heard.


What do you hope will be the end result of a blog on autism and empathy?

I hope that the larger world will come to see autistic people as full human beings, with the full range of human feelings, and that we can turn away from the stereotypes toward greater understanding.

Showcase: WOMANWITHASPERGERS's "The Empathy Question, Revisited"

The Empathy Question, Revisited: Theory of Mind, Culture, and Understanding
July 25, 2011

WRITTEN BY WOMANWITHASPERGERS


The recent opening of Rachel Cohen-Rottenberg’s new Autism and Empathy website has started me thinking about the whole empathy question in regards to autistic people again. In my first post about autistics and empathy, I mentioned Theory of Mind issues as one of the possible reasons why there is a perception that autistic people lack empathy. With what I had read about Theory of Mind at the time, I’m now reexamining the concept and wondering if I had gotten it slightly wrong, especially in light of the recent challenges that other autistic writers have made to the prevailing ideas about autistics and Theory of Mind.
The Sally-Anne Test

The prevailing idea about autistics and Theory of Mind goes something like this: having good Theory of Mind means that a person is able to determine the contents of both one’s own mind and the minds of others; conversely, autistic people are unable to determine or reflect on the contents of other people’s minds. In short, the idea is that autistic people are unable to understand other people’s minds and know that others think differently than they do. This idea was put forth in Simon Baron-Cohen’s 2001 paper on the subject, and I’m sorry that I didn’t unpack it a little further before writing my first post about empathy and autistics. Now that I have, I again have to say: what a load of bullshit.


Cracks in the Edifice

To me, possessing a Theory of Mind means that one is able to get inside someone else’s head – and dare I say, heart – and understand what he or she might be thinking or feeling. This practice can be evident in many applications, both practical and creative. For example, my craft as a poet – especially one who frequently writes persona pieces in the voices of other individuals – requires me to get inside someone else’s head in order to write. The words, idioms, and imagery may have been generated by me, but I do this whilst wearing the “skin” of someone else. According to Dr. Baron-Cohen, I should not be able to do this at all, due to an “impaired” Theory of Mind. But I do, and do so frequently. How does one explain this?

It might be easy to explain me away as an anomaly: a possessor of Raven Medicine (if you are into Native American Spirituality), or perhaps someone who has learned how to do this by mimicry. However, I do not believe I am alone in my capabilities to do this. Other autistics are stepping forwarding and speaking about their own perspectives and experiences empathy as well as their abilities to discern what others are thinking or feeling: Cohen-Rottenberg debunked the idea on herJourneys with Autism blog and Yusuf Smith systematically took apart Dr. Baron-Cohen’s ideas on his blog.

Other autistic writers are questioning the very nature of empathy itself. Aspie Rhetordiscusses an article by Dennis Lynch, “Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West” which argues that true empathy requires a “bodily displacement” – in other words, to walk in someone else’s shoes, you literally must remove your feet from your own. Aspie Rhetor also states earlier in her post that “empathy… can only be remotely successful when engaged between people with similar backgrounds, people who occupy similar social stations”. Considering these points, one has to wonder if true empathy is ever possible: how able or willing are we to remove ourselves from our own shoes and truly understand the viewpoint of someone else, especially if they are fundamentally different from us?

Culture Clash

Aspie Rhetor’s statements intrigued me and I started to think about the issues of empathy and culture. The reigning experts on autism may not be taking cultural differences into account with the whole empathy question – and by culture, I do not simply mean race (which is NOT a biological truth but a sociological and cultural construct anyway), ethnicity, religion, etc. One must broaden the connotation of the word “culture” when considering this question.

To begin, how do we define “culture”? The World English Dictionary includes the following definitions in its entry for that word:


“1. the total of the inherited ideas, beliefs, values, and knowledge, which constitute the shared bases of social action 2. the total range of activities and ideas of a group of people with shared traditions, which are transmitted and reinforced by members of the group: the Mayan culture”

If we accept this definition as valid, then we must think beyond the general idea of culture and consider non-traditional connotations of the word. Organizations have their own distinct cultures – for example, I can identify and describe the distinct culture of my place of employment. One could argue that each family has a culture. Both entities fit the second definition’s requirement of having “shared traditions, which are transmitted and reinforced by members of the group”.

Now, let’s expand this out to the idea outward and generalize it a bit more. What if neurotypicals could be considered part of a wider “culture”, and autistics part of another? While I realize I am stretching this a bit, I ask you to consider this idea for a moment. As Aspie Rhetor and others have suggested, neurotypicals may have schemas of what is considered “correct” empathy – which is an inherited idea by other neurotypical individuals. Those who do not display empathy according to these schemas may be labeled as “lacking empathy”. However, I think of many people who have left comments on this blog who have discussed their own experiences with expressing and possessing empathy, as well as some of the writers on the Autism and Empathy website who describe not only their own empathetic reactions but those of their autistic/Aspie children. Additionally, I think of Laura Nadine’s video, “My Violin Cries” in which she talks about how she dealt with the loss of her violin teacher and mentor, as well as this short video by AspergerSquare8, “Autistic Awareness – Empathy”. All of these individuals attest that at least some of the autistic population possesses empathy.

So, given the above, could it be that what is often misconstrued as a “lack of empathy” is simply the failure of one wider “culture” to understand another? In other words, could the consistent claims of lack of empathy on the part of autistics be the result of neurotypical researchers/scientists/psychologists/etc. judging autistic empathy by neurotypical standards?

Wearing the Other’s Shoes

I recall when the movie  Avatar was released that there were many who were critical of the whole premise of the film, which chronicled the desire of a member of a dominant culture wanting to become the “other”: a human becoming a Na’vi and then eventually wanting to join them. Race relations were discussed in light of the film, suggesting “White arrogance” and parallels to Dances with Wolves. After hearing and reading some discussions, and reflecting on these discussions, it is easy to wonder if it is ever possible to wear the shoes of another…especially if it’s someone from a perceived “majority” culture trying to understand someone from a perceived minority. By extension, it’s also easy to wonder if most neurotypicals will be able to understand or empathize with autistic people.

What I might term “dominant culture arrogance” is present in many forms and in many civilizations. For example, one might example caste relations in India and conclude that some arrogance exists on the part of those in higher castes which would stand in the way understanding or empathy – for example, a Brahmin attempting to see the viewpoint of or empathizing with a Harijan. Or, if I wish to avoid the “majority/minority” dialectic, I might suggest another term: “cross-cultural arrogance”. In this case, it could be defined as the tendency to consider one’s own culture/group/etc. to be universal, natural, or even superior versus that of another. But in either case, the arrogance would exist.

What would cause such arrogance? One might conclude that this arrogance, along with prejudice and biases, were inherited from parents of other family members; unless one choses to reject them, they remain with an individual throughout adulthood. Included with this arrogance would be a natural tendency to look down on those from a different, or perceived “minority” culture (the “other”).

Additionally, another factor which could stand in the way of empathy is simple ignorance – a lack of knowledge or understanding about the other culture in question. This kind of ignorance may be caused by a lack of exposure to the “other”, possible due to a lack of opportunities (e.g. not actually knowing an autistic person, thus being ignorant of what one would be like). What’s also interesting is that another cause of this kind of ignorance would be the very prejudice and arrogance I spoke of earlier – such characteristics would cause a person to notwant to get to know the “other”, thus the ignorance continues.

The Requirements of Empathy and Understanding: Truth Versus Fiction

It is easy to wonder if one can truly remove oneself from one’s own shoes to truly experience the world through the eyes of another. This, I would think, would require one to leave one’s own culture, upbringing, personal prejudices, mental filters, and even perhaps one’s own identity behind to do this. For many, this is certainly no small task – it is easier to empathize with someone that you can easily identify with.Yusuf Smith gives the example of the attitudes of French feminists towards Muslim girls who wish to wear veils, stating, “they identify with the girls who do not want to, and insist that their right not to wear the veil comes before the right of those who insist on wearing it to receive an education or, in some cases, employment”. In other words, this would be a form of flawed empathy, and I would imagine it would be very hard for those feminists to imagine themselves wanting to wear a veil. This would require those feminists to leave behind their own ideas, beliefs, and mental filters.

Similarly, it is easy for neurotypicals to imagine a hellish, painful existence as an autistic, basing their assumptions upon their own ideas/beliefs/prejudices. However, in his article, “Don’t Mourn for Us”, Jim Sinclair says that “the tragedy is not that we’re here, but that your world has no place for us to be”. I know this is true from personal experience, as my personal pain related to Asperger Syndrome has nothing to do with the Asperger’s itself but more to do with its encounters in a neurotypical world, which include emotionally painful things such as misunderstandings and prejudice as well as physically painful things such as sensory overload.

However, once prejudice and arrogance has been removed and any “culture clash” I spoke of earlier has begun to melt away, I believe that successful acts of understanding and empathy can occur. First of all, we must remember that the human existence can be summarized by basic needs and desires. I think of Abraham Maslow’s Hierarchy of Needs in which specific needs fall into five categories: physiological (sleep, food, drink), security (financial stability, a safe neighborhood), social needs (belonging, love), esteem needs (self-esteem, personal worth), and self-actualization needs (personal growth and fulfilling one’s potential). While some of these basic needs might manifest differently with each individual, I would argue that these categories are very basic and could encompass many different specific needs and desires. Even beyond these five categories, it might be possible to define the human experience with need and desire as two distinct states of being: the joy, satisfaction, or feeling of security in having one’s needs met versus the pain, sorrow, frustration, or anxiety at either losing something that meets a need or not having a need met at all. I think that the understanding of these two states – the joy and the sorrow – is the basis of empathy, unclouded by prejudice, unclouded by personal belief, and unclouded by specific personal desires.

Second, since any act of empathy must begin with the other person in mind, we must attempt to understand the other person with whom we are attempting to empathize – in other words, trying to find out what he/she wants or needs. This can be as simple as asking a question. Depending on the situation, the question might be, “do you need a hug?” Or, “how are you feeling?”, Or even more basic, “What can I do to help?”

Beyond Theory of Mind

Given what I believe that acts of empathy (at least expressed empathy) require, it would seem to me that Baron-Cohen has incorrectly expressed his idea of what Theory of Mind is. I believe that his “Theory of Mind” should actually read more like this: it is the ability of a person to determine the contents of one’s own mind as well as the ability to correctly assume – using current beliefs, shared cultural artifacts, and basic cultural assumptions – what the contents of another person’s mind would be. And according to this definition, this means that anyone – not just autistics – would be likely to have impaired Theory of Mind if they are blinded by prejudice, ignorance, incorrect cultural assumptions, and even a lack of respect for the other person.

As documented above, empathy does not require that someone be skilled in this particular “Theory of Mind” and simply requires a desire to understand, put away personal prejudices, and reach out to the other is required. Judging from my own experiences, as well as the experiences of other autistics, I am certain that autistic people are capable of this kind of understanding and empathy. The prevailing definition of “Theory of Mind” be reexamined and considered. Its continued perpetuation will continue to be damaging to autistic people and unfortunately continue to promote the “lack of empathy” myth which continues to plague the autistic community.

Must Read for All Who Seek Medical Treatment for Autism

We are faced with a dizzying array of potential treatments for our children, some peddled with promises of quick cures, others with caution. Prometheus has a must read for parents up on his blog. Please take the time to give it a read.

Beat the Back-to-School Jitters: I'm Not Ready by Lisa Quinones Fontanez

I'm Not Ready by Lisa Quinones Fontanez

It's no secret that our kids have trouble transitioning. And with 23 days left (but who's keeping track?) until the end of The Boy's final school year at his current placement, I'm trying to prepare him.

When I know there will be a change in our routine, I explain it to him using the words "first" and "then." First we'll go to the supermarket and then the park. Or, First school, then Sensory and then Home. I do this because he always needs to know what's coming next.

For the last few weeks, I've been telling The Boy, that soon he'll go to "a different school."

The times that I've said this to him, he's replied, "We're going to take the train to the school?" Sometimes it comes out as a statement, other times like a question. And I wonder what school he's thinking of, since he's taken the train with me to interview at four schools. But I know it's too complicated a question to ask. And I don't want to him to say "the school with the tree" because that was my absolute dream school and we were rejected.

This week, I've gotten two calls from The Horizon Program and while I'm looking forward to The Boy starting there. I still have my doubts. As I'm typing this, I feel my heart beating faster and I'm trying to breathe in and out slowly to calm my anxiety. Still, my hands are shaking and my fingers tapping nervously on the keyboard.

Am I making the right decision? I can't tell you how often I've asked myself this question. How often I've been unable to sleep over it? It's a foolish question, really. Because I know I would question any new school - even the dream school.

Because I'm not ready for him to go to kindergarten. I'm not ready for him to grow up. I'm not ready to let him go. He's already lost his first tooth. And has a second one ready to come out. He's starting to push my hands away when I try to help him with things. His favorite phrase of the moment is "all by myself." He wants to brush his teeth all by himself (even though he can't). He says he wants to take the bus to grandma's house all by himself (even though he won't). And says he wants to pour his juice all by himself - this he can do. Well, almost.

The Boy is starting to show independence in self-help skills. I know, that's great! Especially since some are part of his IEP goals. And it makes me so proud to see how far he's come and every inch of progress makes me more hopeful for the future. But can't he need me just a little bit longer?

Come September, The Boy may not have any trouble transitioning. The Boy may get on that school bus on the first day of kindergarten without looking back. Maybe all this anxiety is for nothing. But if he does have difficulty transition, he'll have the proper support, and he'll adjust quickly.

But in the meantime, who is going to help me with these transitions? Because I really wish there was someone to tell me what's coming next.

Beat the Back-to-School Jitters

Beat the Back-to-School Jitters (cross-posted at Countering)


I've been immersed the last several weeks in trying to put together a local "Beat the Back-to-School Jitters" events here on August 10. Both fundraiser (although parents and children can attend free) and information and tool provider, it's proving to be both time-consuming and energizing to line up sponsors (come on, sponsors!), vendors, speakers, volunteers, and door prizes. I've been on the phone, in businesses, and on the computer working to make this happen. And I've had some wonderful friends help me with this. It's coming together, and I can't wait to see families walk through those doors and hopefully leave two hours later, armed with tips, tools, information, and the absolutely vital realization that they are not alone.

I'd like to give them a little more than that, though. I'd love it if bloggers would share their posts, their worries, their tips, and their tools. We'll run them on the directory, and every attendee will leave with the event with a business card for the directory so that they can read the offerings on their own time. I'll showcase those entries that are up on the directory when I give my presentation. Help me show my local community just what a great international community there is out there, show them the diversity and the acceptance that they'll find.


Please email me your link or your piece to kwombles@gmail.com and I will get the pieces posted as they come in. Thank you!

Showcase: AlisaRock from Autism Experience

AlisaRock from Autism Experience

If you want my body, and you think I’m sexy…

Last night, I asked my son for a kiss good night, and I swear he tried to slip me some tongue.

Eeeeewwwwwww.

Puberty has hit Conor full force this year.  This was to be expected.  He turned twelve in February, after all.

Whenever you ask someone with an older child on the spectrum about puberty, their face darkens immediately and they say, “It’s so hard.” They just shake their heads.

Maybe they couldn’t find the words to accurately describe it.  Or maybe, just maybe, it was too horrible to say.  Like saying the name out loud… Voldemort. I can never get a straight answer.

Conor has always loved the ladies.  The prettier the therapist, the faster Conor would run up to the classroom in our home.  Blonde, brunette, Asian, Caucasian, Jewish, atheist… Conor didn’t discriminate, as long as the girl was pretty.  Sorry, Mr. Matt, but you just couldn’t compete.

My husband and I used to joke about it all the time.  A few months ago, he even made one of his therapists a CD of various songs.  When I asked him why, he said simply, “So she can listen to it in her car.”  If I had had any Barry White songs, he would have slapped them on that playlist so fast… so fast.

But now I know why everyone’s face darkens when they think about puberty in their child with autism.  Conor has all these sexual feelings that he has no idea what to do with.

And he doesn’t care about social norms. We’re going to have to put together an entire behavior protocol about putting his hands down his pants in public.  He just doesn’t understand that this is something he should do in the privacy of his room. Or maybe he just doesn’t want to follow the rule. Or he just doesn’t care. I’m not sure.

He wants to hang out with the ladies, but he has no idea what to do.  So he resorts to sniffing their hair surreptitiously or, gulp, licking a girl’s arm while swimming next to her in the ocean.  (Hey, he likes girls and he likes salty things, so…. Why not?  I swear, ask my brother-in-law John, he saw it too.)

And, since I’m the closest female to Conor, I get lots of questions, like pointing at my breasts or my crotch and saying, “Can I touch that?”  “No, Conor, that’s private.” Mostly, he listens.  Mostly.

But that’s not all.  What I remember most about my own puberty is the moodiness.  All those hormones floating around, wreaking havoc.  One time, I cried because my birthday was on Thanksgiving.  That was it, nothing major.  Just… didn’t want my birthday on Thanksgiving, I guess.  Actually, I think I turned twelve that year.  My poor parents.

Moodiness for Conor signals unpredictability.  He’ll be playing the Wii happily, then run into the kitchen looking for someone to punch.  He’ll go along with the exercise program quite happily one day. The next day, the treadmill is some exotic torture device that apparently requires the user to yell at the top of his lungs for twenty minutes.

This moodiness, the ups and the downs, would be easier to take if we didn’t try to do things as a family.  Like taking a vacation.  Going to a ball game. Or exist in the same house.

You never know which Conor you’re going to get… nice, happy, easy go lucky Conor, or mean, scowling, short fuse Conor.

Or Conor on the prowl….   EEEEEEEEEWWWWWWWWWW.


Check out Rod Stewart in these really hot leather pants.  Tee hee.


http://youtu.be/Hphwfq1wLJs

Center for Autism Ranked in Top Three Non-Governmental Organizations Providing Largest Financial Support to Autism Research

FOR IMMEDIATE RELEASE

Media Contact:
Daphne Plump
Tel: (661) 478-6512

Center for Autism Ranked in Top Three Non-Governmental Organizations Providing
Largest Financial Support to Autism Research


The U.S Department of Health and Human Services' Interagency Autism Coordinating Committee ranks the Center for Autism and Related Disorders in the top three non-governmental financial supporters of autism research in the United States.

NATIONWIDE    July 19, 2011 -- The Center for Autism and Related Disorders, Inc. (CARD), one of the world's largest autism treatment centers that provide state-of-the art therapy, has been named one of the top three largest non-governmental financial supporters of autism research in the United States, and the only for-profit organization in the top three-tier ranking. The research findings come from the U.S Department of Health and Human Services' Interagency Autism Coordinating Committee (IACC), whose mission is to provide a blueprint for autism research that is advisory to the Department of Health and Human Services and serves as a basis for partnerships with other agencies and private organizations involved in autism research and services.

"It's a great honor to have our enduring commitment to research recognized at the highest level," says Jonathan Tarbox, PhD, BCBA-D, CARD Director of Research and Development. "The vast majority of our research is on applied behavior analysis (ABA) methods of assessment and treatment. Our team's approach also includes any topic which may hold promise for producing information that could improve the lives of individuals with autism."

CARD's research department is committed to the scientific method as the only valid approach to evaluating treatment for autism. The team's mission is to conduct empirical research on the assessment and treatment of autism and to disseminate research findings and derived technology through publication and the education of both professionals and the public.

For more information about the CARD research department, visit: http://centerforautism.com/research-mission.php.



About the Center for Autism and Related Disorders:
The Center for Autism and Related Disorders (CARD) has earned a reputation as one of the world's largest and most experienced organizations effectively treating children with autism, Asperger's syndrome, PDD-NOS, and related disorders. Following the principles of applied behavior analysis, CARD develops individualized treatment plans for each child, and provides autism services around the globe.

For more information about CARD, visit www.centerforautism.com.

showcase: Libby from Grateful for the good days

Libby from Grateful For The Good Days

Why I've decided to blog/Doctors always notice

I finally went to the doctor today after what has seemed like months
 of being sick off and on.  I had to take Isaac with me because
 Andrew was at work.  I could tell it was going to be a struggle
 when he kept grabbing the office's door knob and saying, "help, I'm stuck!"
 Today has been one of those days where Isaac seems to be more in his own
world than in reality.  He was grumpy from the minute I picked him up
 from school.  His teacher sent home a book titled,
 Just be nice...and say you're sorry! and a less than praiseworthy report sheet.
  These are the kinds of things that leave me in detective mode- wondering if
 his body still isn't rid of the cheerios he ate last week or if his yeast is up or
 if being sick is causing him to not be himself.

We were, as always, waiting longer than expected to get into the doctor.
  He was bouncing between being nervous and being hyper.
 He was not having good listening.  He kept laying on the floor.
  When the doctor came in he was talking to himself and using character names
 instead of real names.  He had no sense of personal space and just about climbed
 in her lap to get to her computer.  After the third time of trying this after being
 told not to, my doctor looked at me and asked, "Is he...?"  I just said,
 "PDD-NOS...on the spectrum...yeah."  While I like to tell myself that other
 people don't notice that he's quirky, or if they do, that they just chalk it up
 to him being three- Doctors. Always. Notice.  And it always sucks when they do.
  My heart sinks like my secret is out.  Not that it is a secret.  I'm not embarrassed
 that he is on the spectrum, but I've lied to myself enough to think that other
 people really don't notice.  It's not for my sake that I don't want them to
 notice- I'm the first to tell people about it, but it's for his.  Because I know
 one day people won't think his quirks are so cute anymore.  And they'll judge.
  I know we're getting closer to that day.

We left the office to go get my prescription.  While putting him in his car seat,
 Isaac looked up at the sky and said, "Look! People!"  I told him they were
 clouds in the sky.   He repeated me, but then said, "Look! People in the sky!"
 I shrugged.  Who knows what he really sees?  I'm starting to realize just how
 different things must look to him.  He has a totally different nervous system
and brain than "normal" kids.  It was 3pm.  His singing for speech class
 would be starting in a half hour.  My need-to-be-in-control brain was trying
 to push this little boys limits.  He looked tired and not himself, but I was still
 determined to get him to that class after picking up my medicine.  After
that doctor's inquiry my "fix it" mom mode was kicked into high gear.
  He would go to speech class.  He would learn to talk "normally".
 People wouldn't notice so much.  We pulled into Meijer and I called my dad.
  I just had to tell someone what that doctor asked about my baby,
 and how it made me feel.  "It's just hard.  When he's like this,
 I don't know what to do.
  I don't know how to help him get back in balance."  I sobbed.
  Dad gave his usual calming "I know."  I said goodbye and hung up
 to go into the store.
  I turned around to look at Isaac.  He was sound asleep in his car seat.
  I sighed.  This boy didn't need singing class.
 He needed a nap so that he can get over this cold.
 He had been up since 6am.  So we went home instead.

He's napping.  I'm blogging.  It's been something I've wanted to do for a long time,
 but haven't until now.  I didn't want people to think I felt sorry
 for myself or that I was complaining.  But I think part of going
 through the process of accepting that your kid is different, and that it's
 going to be a long and windy road takes talking about it.  My poor dad
 has been my sounding board for the past 3 years.  It's time to give
him a break, and give other people a chance to read the day to day
 of one mom's journey with a quirky kid.

Showcase: Carolyn at Neurotpyical Mom

From Carolyn at http://neurotypicalmom.com/:

My seven year old has Aspergers and I need to become a Pediatrician.  It still feels very strange to say both of those things.  Perhaps because we have only had an official diagnosis for 5 months?  But that's not it, not really.  Getting the diagnosis was such a relief, after years of Z being thrown out of schools, acting oddly on play dates, destroying our house and making me curl up in a ball and cry weekly.  No, once we had the diagnosis I actually exhaled.  Consciously, I never even knew that I was holding my breath, but I must have been.  For five years at least, because once I heard Aspergers, my first thought was, 'finally, thank god!  Now we can actually help him!'  And help him we did.  A whole new world opened up to our sweet boy, he began to blossom in ways that I could never have imagined.  Our relationship flourished as it never has before.  We are close now, he comes to me when he's sad, just last week - he told me he felt sick!  Hence the need for the aforementioned medical degree.  

What a huge victory that was!  I can assure you that has never happened before in his entire existence.  I've spent most of his life feeling as if I were a perfect candidate for 'Worst Mother of the Year' award.  Especially when I would do things like take him on a plane and he would say, casually, mid-flight,  'huh, my ear just popped'.  Why - you might ask - does his ear pop?  Well, that would be because of the raging ear double ear infection that he had prior to getting on the plane.  The one that I never knew about - I swear!  

The doctors would always look at me with reproach, 'this looks like it's been going on for a while, Mom', they would say as I looked at them helplessly, a mix of guilt and anger churning in my gut.

'Do you think I knew and I kept it from you? That there is any part of me that would want him to suffer, EVER?  No folks, he didn't tell me.  He didn't act different in any way.  He was his normal self, running around the house, banging into walls, falling on the floor and laughing.  He was only BUSIER, MORE EXCITED and MORE FRUSTRATING - that's all!  That's the only clue I would ever have that all was not right in Z's world.  And, I'm sorry, sometimes I missed the signs.  I didn't do it on purpose, I would just get busy, in the way that parents do and suddenly it would occur to me that Z was acting like he was on a day pass from the loony bin and had been for the past 48 hours...

How much would be solved if I was a pediatrician.  Then, if Z started acting a little more hyper and I could break out the stethoscope and look in his ears.  Or pull out a throat swab and test for strep.  How I could avoid so much pain for Z (not to mention all of the judgement for me).  If I have one more doctor look down his or her nose at me and treat me like I'm a bad mother I think I will lose it.  I may actually scream the words throbbing in my head!  

'I'm not doing it on purpose!'  

'He didn't tell me!' 

And when he's really sick, the times that I actually do know how bad he feels because his behavior is soooo over the top,

'I want to help him too',  

'I want to hold him and make it better',

'I want him to stop screaming every time I touch him'

'I want some peace'

Most of all, I just want to know how to make my baby feel better, it must be hell to be in his mind sometimes. I can’t even imagine and if I try to, it hurts my heart.  Maybe if I was a pediatrician, this would all be better.  At least, that's what I tell myself.  Soooo, anyone know any good schools that take stay-at-home moms?  Or perhaps there is a way you can get that M.D. online?  Any thoughts?  Anyone? Bueller?

Showcase: "I'm the Parent" by Tanya Gonzales

The following is an incredible piece by a wonderful woman I met this week (one of many wonderful men and women I met at a conference I attended). Each day, I am amazed at how awesome, how giving, how compassionate so many of the families impacted by autism are (and that includes the family member on the spectrum--awesome, giving, compassionate). They and their family members with autism should be celebrated, appreciated, and applauded for getting up each day and moving forward, working harder, giving a little more.






I’m the Parent….
by Tanya Gonzales


I’m the parent of a beautiful young boy with Autism. So often I find myself thinking what it means to be the parent of a special needs child and the feelings I often wish I could scream from the roof tops. I have captured some of them here and share them as a way of hopefully building understanding, for I’m the parent of a special needs child.

Teachers, I’m the parent of a special needs child and I know that as a special needs teacher, you face many challenges in the class room, I know this because I’m the parent. Sometimes I wish you would be as quick to tell me about his victories as you are about his problem behaviors. I long for the day you can’t wait to tell me about something he has accomplished and that you would realize how bad I need to hear that, because I’m the parent. The parent who mourns lost dreams and wonders if my child will be able to accomplish even just the basics, and live a fulfilling life. The next time you say to me in disgust that “he was in time out most of the day and just out of control” please take a moment and remember, I’m the parent, and a few kind words, or a gentler approach would be much appreciated. Please also know that I will always have concern for his safety, want the best education, advocate on his behalf, and will not make apologies if, while I am caring for my son, I use a strong tone, stand my ground, or fight for what my son is entitled to because I’m the parent of a child who cannot do this for himself.

Strangers, as you stare and wonder why I can’t control my child or if he’s a spoiled brat. I wish that you would just know, I’m not a bad mother, my son is not a spoiled brat, I’m the parent. I’m the parent of a child who sometimes can’t handle his environment, has a hard time waiting, is over stimulated, or is just trying to process all that is going on. Instead of staring, offer a hand, or just a simple act of kindness, a smile, a wish for a better day. I’m not a bad mother, I’m the parent of a beautiful child who blesses me in more ways than your staring, judge mental eyes will ever know.

Friends, most of you know me as an outgoing, some say strong, independent, no nonsense woman and most of the time that is true but please also remember, I’m the parent of a child who has needs that sometimes drain me but mostly break my heart. I’m often filled with questions, “what will happen to Jordan if something happens to me”, “will he drive? Love? Marry? live on his own? have a seizure and hurt himself?” “will he eat regular food? have I been a good mom? have I done enough?” Sometimes I am so overwhelmed it’s all I can do to get out of bed but I must, for I’m the parent. Please understand that like Jordan, I can’t always cope with my feelings and at these times please know that sometimes I need space, sometimes a strong shoulder and listening ear, sometimes a cheerleader to tell me to keep going. Sometimes I just need you to know that underneath the silliness, the sometimes false bravado, the “life of the party” mentality, I’m the parent of a child with special needs.

And my dearest Jordan, you are a child who constantly amazes, inspires, and enlightens me in ways that I can’t always articulate. Each time you touch, hug or kiss me, look at me with those beautiful big eyes, lay your long arm, with man like hands around my shoulder, I thank God that I’m the parent. The parent that gets to brag to all my friends about your genius qualities. I’m the parent that gets to laugh every day, see your face light up every day when I pick you up from school, and know soul deep love that overwhelms me and fills me with the greatest joy. Aaah yes, I’m the parent.

Resource Readers Should Check out!

http://www.wcmhblogs.com/autism/
From the site:

"About TheAutismPuzzle.org

TheAutismPuzzle.org is your source for all things relating to Autism that invites you to be part of capturing and reflecting on the news and events that take place every day in the community.

The purpose of the web site is to provide a central meeting location where all viewpoints and ideas are welcome. The web site is intended to foster the open exchange of personal stories, thoughts and knowledge in the Autism community – posted by contributors.

These contributors have volunteered to post entries on the site and will encourage other community members to join in the discussion by posting comments, starting a thread on the forums or asking questions for the community to ponder. The contributors are from the Autism community from parents and medical professionals to advocates for many of the Autism community’s organizations. If you would like to become a contributor, click here to contact us."

Showcase: Scott J Shea

From Scott J Shea (make sure you check out the whole series of posts!)

Part 5: Autism and Geert Hofstede's Cultural Dimensions Theory - Uncertainty Avoidance Index

->Part 4<-

The Uncertainty Avoidance Index (UAI) from Hofstede measures how a culture handles ambiguity, uncertainty and change. Those groups that measure high on the UAI tend to experience high anxiety regarding uncertainty and seek to limit or minimize the uncertainty in any given situation. Cultures that measure low on the index try to have as few rules as possible, are more pragmatic and are more tolerant of change. Examples of countries that are high on the UAI are Greece, Russia, Poland and Portugal (contrary to popular views of Germany is it much closer to the middle). Countries that score low on the scale are Sweden, China and the UK; while the US is low at a score of 46 it is not the lowest by far.

From a theoretical standpoint I think the Autsim subculture would score very high on this index. In fact I suspect most readers of that last statement said "well, duh". Ritualistic behavior, precision and the need for sameness are hallmarks of of autistic behavior at all levels and sometimes, depending on the situation, this has been included as part of the Autistic Advantage (source).

For those of us in low scoring countries like the UK, Australia, Canada, China and the US (map) I cannot think of a stronger point of conflict between the subculture and culture as a whole. In those countries that are high on the Index many of these behaviors may be seen as well within cultural bounds offering a rare break for ASD folk in their attempts at integrating with society.

I would go into detail regarding Kwintessential's tips for dealing with cultures that score lower than us on UAI but I imagine they are well known in practice, if not theory. All of us in low index countries have had to learn to deal with the changes common to the neurotypical society around us and being told to be more flexible. I would be interested to hear how someone from a high UAI country experiences this dimension.

As suggestions to those of us on the Spectrum I would say focus on the anxiety created by the changes with typical anxiety measures such as meditation, calming talk, a type of tea that works for you and possibly medication.  Xanax has been used for anxiety attacks but the potential for addiction and misuse make it impractical for any sustained usage. Some anti-depressants have been for effective for reducing anxiety in general and may be a good line of defense against total meltdowns.  Here are a couple of articles that offer anxiety remedies to try: 5 Quick Ways & 25 ways to relieve anxiety

->Part 6<-

Helpful resources:

World Map of Uncertainty Avoidance

Uncertainty Avoidance - Tips

5 Quick ways to overcoming anxiety

25 ways to relieve anxiety

Autism Success Stories - Axel Brauns

Autism Success Stories - Axel Brauns

Each week in conjunction with Autism Care UK, who specialise in autism support services and autism treatment, we have been celebrating some of the most high profile people along the autism spectrum. This week’s autism success story profiles German author and filmmaker Axel Brauns.

Who is Axel Brauns?

Born in Hamburg, Germany, Axel Brauns is a writer and filmmaker who is highly respected within his own country. After school Brauns began studying law, however he stopped his studies in 1984 to concentrate on his writing.

He has published numerous novels and created the popular German literal character Adina Adelung, and been nominated for the German Book Prize. As well as this, in 1992 he penned his bestselling autobiography Shadows and Coloured Bats – Living in another world where he describes his autism, which he says affected him from the age of one. Braun’s first feature film was Tsunami and Stone Piles and was critically acclaimed.

Braun is also the subject of the full length documentary The Red Carpet which focuses on his autism as well as his creative process and his life in general, a clip of which can be seen here - http://tinyurl.com/redcarpetclip.

Axel’s Experience of Autism

Like many on the autistic spectrum, Braun is fascinated in studying a particular topic. In Braun’s case, it is a reference book about German racing horse statistics and genetic information: German Harness Racing Studs.  It was as a result of the joy that reading this book that inspired Brauns to write books of his own. He states in the film “My dream was to write a book that pleased other people as much as this book pleased me”. Axel realised that unlike him most people are interested in stories as opposed to race horse statistics, so decided to start writing fiction.

In his younger days Braun was unable to speak. As he grew older Axel painstakingly taught himself facial expressions, speech patterns, and even comic timing by watching films and reading books. His persistence paid off. Axel admits he still feels uncomfortable around people he doesn’t know and forces himself to spend time in public.