My first professional blog attempt


Welcome All!

The objective of this blog is to advocate, educate and inform my readers by providing an 'insiders view' to the screening, assessment and interventions for adults with Asperger's Syndrome (AS). Timely articles and postings will include topics such as screening, evaluation, self-manangement techniques, specific differences, evidence-based interventions (EBI), Alternative Behavioural Analyses (ABA) and much more.

As a trained counsellor, I was recently diagnosed AS and so this blog also dares to share part of my own journey through assessment & adjustment -- and eventually seeing the issue "with new eyes"; and other salient issues that might affect those struggling to come to grips with their diagnosis (especially those diagnosed later in life, like I was).

Created as a practical and useful resource, this blog will attempt to offer its visitors essential information -- hopefully useful for informing other counsellors & mental health professionals, advocates, barristers, Special Ed instructors, and, most of all, for those NT adults with "Spectrumite" partners.






Thursday, 26 January 2012

Love Is Blind, Marriage Is the Eye-opener



http://www.psychologytoday.com/blog/my-life-aspergers/201112/love-is-blind-marriage-is-the-eye-opener

Speaking On The Spectrum: Autism News for Tuesday, January 24, 2012

Speaking On The Spectrum: Autism News for Tuesday, January 24, 2012: 1- Technology Gives Parent of Autistic Child Peace of Mind: http://fox4kc.com/2012/01/20/technology-gives-parent-of-autistic-child-peace-of-...

Autistic Adults - A special program on autistic adults in Singapore

Check out this vid -- "How do Auties in Singapore define life?"

http://www.youtube.com/watch?v=nXJEXnCFikI

Dear School Personnel, Community Members, Teachers, Parents and Neighbors

‎Sunday, ‎26 ‎June ‎2011, ‏‎8:00:42 a.m.


To Whom it May Concern,

I am the parent of a special needs child. I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics. Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee. Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.
I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.
I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.
I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.
I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.
I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children. The growth did not come without much pain and many tears but it came.

So I ask you, please

The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind. Give a smile of recognition for what that parent is going through. Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations. Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included. Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome. When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of their disorders or the obsession with perfectionism. The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them. They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits. Take a minute before that call and know that they appreciate all you do and want a collaborative relationship in their child’s education.

The next time you are in the teachers lounge, please do not discuss their child. Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period. Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law. Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities. Understand that educating a child with special needs is one of the most difficult tasks a parent can face, know that the last thing they want is an adversarial relationship. Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions. Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.

The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello. Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel. Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences. Take the time to talk about compassion, acceptance and special needs. Please remember that your child learns from you. Be a role model, mirror respect and discourage gossip.

The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits. Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting. Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember ”illness”.
Know that it is this generation that can stomp the stigma and create a world of acceptance.

The next time other parents are talking about “Those Kids” be our heroes, stand up for us.

The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children. Take the time to know us.

AFTER POST: Thank you for the tremendous response to this writing and requests to post or share on your blogs, websites or educator sites. Feel free to copy in its exact form and use author credits to comply with copyright.



Wednesday, 25 January 2012

DSM-5 Committee: Don't Reduce the Criteria for an Autism Spectrum Condition in the DSM-5

Why This Is Important

WHEREAS . . . we, as adults and teens on the spectrum (as well as we, their loved ones) do not want to return to the days prior to the DSM-IV, when most of our (their) behavioral differences were thought of as character deficits

WHEREAS . . . the DSM-IV did not (as has been stated) financially drain clinical or government resources; on the contrary, the DSM-IV, in a big picture sense, actually saved money given the long-term cost of (a) children who if not educated properly would cost more in services later on, and who because of their appropriate education could be productive citizens as adults, and (b) individuals who by knowing who they were had their capacity for anxiety, depression, or anger lessened—thus decreasing incarceration and homeless rates and reducing their dependence on others to lead productive lives

WHEREAS . . . The DSM-IV did the world great good by broadening the criteria, thereby expanding our notions of behavioral pluralism and increasing the self-esteem of innumerable individuals: Furthermore, without the DSM-IV there would most likely not be anti-bullying campaigns; (given two wars since) the much-needed increase in attention to Post-Traumatic Stress Disorder; and a multitude of other, big picture improvements for us all

WHEREAS . . . autism spectrum diagnoses are not “over-diagnosed,” especially given our still-limited understanding of how these conditions manifest in women; and how many under-represented, economically-challenged communities (especially belonging to minority groups) still have not been properly evaluated

WHEREAS . . . the proposed changes to the DSM-5 contribute to the emotionally-destructive “competition of suffering” (between opposite ends of the spectrum) that the autism world was finally starting to back away from, wherein non-GRASP and non-like-minded entities often attempted to invalidate the seriousness of another’s experiences

WHEREAS . . . the DSM-5 has attempted to implement these changes in bad faith by releasing news thereof at a time when they had no outlet available to the public for receiving commentary

WHEREAS . . . the DSM-5 Committee’s autism spectrum experts seemingly carried no real expertise or experience with either (a) the end of the spectrum at risk with these changes, nor (b) adults; and we object not to the participation of these individuals but to the overall, and very poor composition of the Committee

WHEREAS . . . the DSM-5 Committee’s attempts at damage-control (including many statements of “Well, your child may or may not qualify, but don’t worry. Wait and see instead.”) only furthers our confusion over what their true motivations could possibly be in implementing such backward revisions

WHEREAS . . . the DSM-5 Committee is not beholden to, nor should they be guided by proven or unproven economic concerns whatsoever; that they should instead be guided solely by a concern over our mental and emotional well-being, which these changes dramatically threaten

THEREFORE . . . I believe that the proposed narrowing of criteria for an autism spectrum diagnosis will cause catastrophic and irreparable damage to (1) the future of innumerable children on the spectrum who need specialized education, (2) innumerable parents with children receiving specialized education, (3) innumerable adults on the spectrum who are receiving services under the current criteria, and (4) anyone on the spectrum needing to know that their behavioral differences are the product of wiring, and not personal defect. Don’t reduce the criteria for an autism spectrum condition in the DSM-5.

Click here to go to change.org to sign

In thanks,

Michael John Carley
Executive Director

How An Asperger Syndrome Diagnosis Saved My Marriage

Published 19 Jan 2012


It was my wife Kristen, a speech therapist who had worked with autistic children, who was most suspicious about my behavior. After we were married and living together, she started noticing little "things" about me that were consistent with Asperger Syndrome, a mild form of autism: impaired social reasoning; persistent, intense preoccupations with certain interests; unusual rituals and behaviors; and clinical-strength egocentricity.

Oh, and my thumbs look like toes, so I'm, like, a total catch.

At that time, things were not going well between us. Though we had been best friends since high school, our relationship had been reduced to little more than delicate coexistence. We were both constantly feeling misunderstood, under-appreciated, and resentful towards each other. We didn't talk very much, because if we did, it usually led to arguments. We felt hopeless, sad, and confused, the way people do when they've lost their best friend.

We never could have predicted we'd feel that way when we were first starting out together. After I was diagnosed, however, the fact that we were experiencing these marital problems seemed less surprising. It didn't take long for me to realize that perhaps there was a connection between the fact that our marriage was in dire straits, and the fact that I had this mild form of autism that manifests itself in ways that tend to destroy relationships.

Learning as an adult that I fit the Asperger's profile might have been shocking or unsettling. But it wasn't. It was cathartic and eye-opening. I had always understood that I was different, and I had always felt that I was struggling with things that didn't seem to be a challenge for other people, but I never knew why. With my diagnosis, I was given insight into how I work. I felt empowered and full of hope, which is a great feeling for anyone with such silly-looking thumbs.

And Kristen was given a new perspective on who she was married to. She could see that I wasn't unwilling to tune into her needs or be more flexible, but rather that I was unable to do those things sufficiently, without her help. There is a huge difference between being unwilling and being unable. Kristen was essentially handed a user manual for her husband (and who doesn't need one of those?), which she used to learn how to engage with me more effectively. She learned, for example, that she had to overtly express her feelings and needs if she wanted me to be responsive to them, and that I operated best during social events if I had a clear mental image of what to expect beforehand: "They're serving dinner at 6:30 with dessert to follow, and then we'll probably chit-chat over coffee before we leave. Decaf, if you're wondering."

Armed with new self-awareness and intense determination, I started looking every day for ways to manage the behaviors that had been wreaking havoc on our marriage. I wasn't interested in a complete personality overhaul; I just wanted to become more in control of myself. So, I started keeping what I called a "journal of best practices," which was a collection of personal maxims that I wrote down and tried to practice everyday: "Don't change the radio station when she's singing along," "Apologies don't count when you shout them," "It's better to fold the laundry than to take only what you need from the dryer," "Don't hog all the crab Rangoon." (Yep. Did I mention I'm a catch?)

Working together, guided by love and my best practices, Kristen and I were able to transform our failing marriage into the happy marriage we'd always wanted. I learned how to manage my behaviors on my own and be a better husband. Occasionally I took things a little too far--holding routine performance reviews to measure my progress week to week, for instance--but for the most part, my Asperger zeal and single-minded determination served us rather well on our journey of reconstruction. Best of all, we were able to renew our "bestfriendship," which is what I wanted more than anything.

So, if you ever find yourself staring at your partner over breakfast and wondering who the $#*! you married--and you will--just know this: there is hope!


David Finch's essays have been published in The New York Times, Slate and Psychology Today. "The Journal of Best Practices" [Scribner] is his debut memoir. He lives in northern Illinois with his wife, Kristen, and their two children.




SOME INITIAL REACTIONS TO THE DSM-5 REVISIONS

Study about potential effects of new autism definition spotlights the Ingelfinger Rule


Reactions to a New York Times story from last week about a new definition of autism that could limit the number of people diagnosed with the condition — and therefore eligible for support and services — have turned into a good case study in how the Ingelfinger Rule works.
For the uninitiated, here’s how veteran medical trade reporter Bob Finn describes the rule:
Franz J. Ingelfinger, M.D., (1910-1980) was editor of the prestigious New England Journal of Medicine (NEJM) from 1967-1977. During his tenure he decreed that for an article to be published in his journal it must not previously have appeared elsewhere. The rule prohibited authors from releasing their results to the news media before the date they were published in the journal. A small number of other journals (such as JAMA) developed similar policies, and the net result is that scientists are often afraid to talk to reporters for fear that they’ll lose the opportunity to publish in JAMA or NEJM (or Nature or Cell or Science).
The new study, by Yale’s Fred Volkmar and colleagues, took a look at the likely effects of the new Diagnostic and Statistical Manual of Mental Disorders (DSM) criteria for autism. The fifth edition of the DSM is scheduled to be published in 2013, and has already been plagued by controversy. As the Times reports:
The new analysis, presented Thursday at a meeting of the Icelandic Medical Association, opens a debate about just how many people the proposed diagnosis would affect.  The changes would narrow the diagnosis so much that it could effectively end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal. “We would nip it in the bud.”
A DSM committee member told the Daily Beast that the Icelandic medical conference was a “notably random forum in which to present such findings:”
“We’re really just hearing about this today,” says Cathy Lord, the director of the new Institute for Brain Development and a member of the DSM committee working on the diagnostic changes (Volkmar at one point was a member of the committee, but resigned). “It was not sent to the committee, it was not brought up to the committee, and it’s embargoed, so technically they’re not even supposed to be talking about it. You’re supposed to not even release the information until it comes out in the journal.”

But that’s not actually how journals typically interpret the Ingelfinger Rule, as Embargo Watch readers may recall. Scientists are free to present findings at scientific conferences, and even talk to reporters, as long as they don’t court that attention. And that seems to be what happened here, according to what Volkmar told Embargo Watch:
I presented the preliminary results – on a subgroup – back in October at [the American Academy of Child and Adolescent Psychiatry] – to much discussion in the large group but zero press attention. One of our problems was that the DSM V approach kept changing so we had to redo and then redid for the entire group – it is the latter that has been accepted.
It seems unlikely the paper, scheduled to published in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP), will fall victim to the Ingelfinger Rule and now be rejected:
I checked with the editor before Iceland — where of all things the New York Times picked it up! — and presented only what we had previously presented at AACAP – one single slide – go figure. We won’t be talking about the entire sample until the paper comes out.
What this does highlight, of course, is that Ingelfinger can prevent a full discussion of findings, even if peer review is done and dusted. It’s unclear when the whole paper will be published so that such a discussion can happen. I’ve contacted the editor of the JAACAP and will update with anything I learn.


Taken from http://embargowatch.wordpress.com/2012/01/23/study-about-potential-effects-of-new-autism-definition-spotlights-the-ingelfinger-rule/




Monday, 23 January 2012

Brain enlargement is associated with regression in preschool-age boys with autism spectrum disorders



http://www.pnas.org/content/108/50/20195

CRACKING THE ENIGMA: Do kids with autism have big brains?

CRACKING THE ENIGMA: Do kids with autism have big brains?: Brain coral, the Whitsundays, Australia Like most things in autism research, the idea that people with autism have big brains g...

Is There a Common Neuroanatomical Substrate of Language Deficit between Autism Spectrum Disorder and Specific Language Impairment?

INTERESTING JOURNAL ARTICLE -- have a squiz if curious...

http://cercor.oxfordjournals.org/content/early/2011/11/01/cercor.bhr292

CRACKING THE ENIGMA: The Adventures of DataThief

CRACKING THE ENIGMA: The Adventures of DataThief: DataThief by Jed Pascoe : R eproduced with the artist's permission Having spent much of the past week struggling to make sense of my d...

Best Practice Autism: Executive Dysfunction and ASD

I liked this post...

Best Practice Autism: Executive Dysfunction and ASD

Best Practice Autism: DSM-5: Rethinking Asperger's Disorder

Lee's an amazing individual -- I can tell from his passions and his posts... have a look and tell me if I'm right!

Best Practice Autism: DSM-5: Rethinking Asperger's Disorder

IDEA takes a stand on the DSM-5 debate...

In your opinion, does IDEA have the right "idea"?

http://blogs.edweek.org/edweek/speced/Zirkel%20Article%20on%20Autism%20Litigation%20Disproportional.PDF







Sunday, 22 January 2012

FAIT DU COMPLET or more review needed???

Listen to an interview with Allison Molloy, CEO of Autism NZ  speaking with TV1 about the proposed revisions to the DSM-5 re: AS diagnoses.

What's your views???

http://tvnz.co.nz/national-news/alison-molloy-impact-autism-re-evaluation-video-4696852