Posting of new content will be on hiatus. Delays in adding blogs may be lengthy.

Friday, December 21, 2012

Because We Must


The Best We Can

Some Much Needed Levity

It's almost impossible not to have a heavy heart this week--the pain radiates out from Newtown and we, as parents, teachers, as human beings, place ourselves in the feet of the Newtown community. As we grapple with the idea that there is often no way to foresee such a horrendous act, even as people pretend they could and shift to blaming those around the young man who acted so violently, so viciously, with such evil. 

We grappled this week with how to tell our children, whether to send our children to school. We read and watched in horror as the media and people on the internet blamed Asperger's for the shooter's spree killing. We also stood and fought against such ignorance, and then as the individual victims' stories came out, we felt all too keenly the pain and the bravery of the parents, siblings, spouses, children who lost someone. We learned that at least one, probably two of the sweet, innocent children lost were autistic. And we grieved some more.

Grief, disbelief, anger, despair. I have little doubt we all felt that this week, even those who wrote such nasty, awful things about individuals with Asperger's and those grappling with mental health issues. Those who kept posting pictures of weapons and advocated everyone being armed, that more guns were a solution, felt the same things. So did those who advocated strict gun control.

Out of the same swirling morass of similar emotions came vastly different responses. We forget that we all experienced the same emotions. We continue to forget the common humanity that underlies each of us. We see enemies everywhere. And we forget that we are a global community: one people, with all life valuable. 

Each of us can only do the best we can. It's all we've got: the belief that what we do can and does matter, that we can make a difference. It's up to us whether it's a positive or a negative difference.

Somehow we must loosen the heaviness weighing on our hearts and souls while still holding on to the lessons learned: lessons that move us forward into a more full  and "joyful participation with the "sorrows of the world."



Participate joyfully in the sorrows of the world. We cannot cure the world of sorrows, but we can choose to live in joy. --Joseph Campbell

Sunday, December 16, 2012

Links to Articles Concerning Autism and the CT tragedy

Kathleen and I believe that offering multiple perspectives is vital to the health of our community. Open exchange and dialogue are key to creating meaningful change in the larger society.

Speculation, as always, is rampant in the CT tragedy. The need to react, even if knee-jerk, is  understandable.

Below are the pieces we have found covering the intersection between autism and the tragic school shooting on Friday (in no particular order).

http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html

http://www.today.com/moms/i-am-adam-lanzas-mother-another-moms-cry-help-1C7625059

Response to the above post:

http://theautismwars.blogspot.com/2012/12/you-are-not-adam-lanzas-mother.html

http://www.emilywillinghamphd.com/2012/12/autism-empathy-and-violence-one-of.html

https://www.facebook.com/notes/the-autism-life/thats-just-not-what-autism-is/10151246304340896

http://abcnews.go.com/US/wireStory/experts-link-aspergers-violence-17987339

http://www.disabilityandrepresentation.com/2012/12/15/when-children-die-grieve-reflect-dont-scapegoat/

http://leftbrainrightbrain.co.uk/2012/12/15/autism-speaks-statement-on-newtown-connecticut

http://grasp.org/profiles/blogs/statement-from-michael-john-carley-on-the-newtown-ct-shootings?xg_source=activity

http://leftbrainrightbrain.co.uk/2012/12/15/asan-statement-on-media-reports-regarding-newtown-ct-shooting/

http://aspiefrommaine.blogspot.com/2012/12/autism-and-sandy-hookct-shootings.html

http://paulacdurbinwestbyautisticblog.blogspot.com/2012/12/mother-with-asperger-syndrome-grieves.html

http://autismwomensnetwork.org/article/awn%E2%80%99s-appeal-media-sources-covering-newtown-ct

http://thewildeman2.blogspot.com/2012/12/connecticut-school-shooting-and-autism.html

http://laughtercouldbethemissingpiece.blogspot.com/2012/12/sad-sorrow-all-is-quiet.html

http://www.autistichoya.com/2012/12/nameless-things-dismantle.html

http://timetolisten.blogspot.com/2012/12/plea-from-scariest-kid-on-block.html

http://kwomblescountering.blogspot.com/2012/12/how-do-you-explain.html

http://www.mindretrofit.com/2012/12/16/i-tried/

http://minikitkatgirl.blogspot.com/2012/12/thoughts-on-sandy-hook-tragedy-and.html

http://asd2mom.blogspot.com/2012/12/and-so-it-begins-blood-libeling-those.html

http://thegirlwhowasthursday.wordpress.com/2012/12/16/you-are-not-adam-lanzas-mother/

http://feedproxy.google.com/~r/YeahGoodTimes/~3/PB0ZIUeULmc/the-connecticut-tragedy-and-autism.html

http://www.psychologytoday.com/blog/aspergers-alive/201212/the-pain-being-linked-asperger-dx-mass-shooter

http://skeptoid.com/blog/2012/12/17/sinister-speculation-part-1-autism/?fb_source=pubv1

http://mamabegood.blogspot.com/2012/12/so-angry-so-sad-what-now.html

http://feedproxy.google.com/~r/spectrummentor/~3/O6Z9iqgSc-I/

http://confessionsofanaspergersmom.blogspot.com/2012/12/what-i-know-what-i-dont.html

http://feedproxy.google.com/~r/blogspot/pGPmZ/~3/MPmqmpE9XTU/im-autistic-please-dont-fear-me-sandy.html

http://feedproxy.google.com/~r/ToTheMax/~3/rLtVTeGODqM/the-connecticut-shootings-whats-autism.html

http://feedproxy.google.com/~r/GirlWithTheCane/~3/mBIJ9upOsl0/

http://yeahgoodtimes.blogspot.com/2012/12/the-connecticut-tragedy-and-autism.html

http://thelede.blogs.nytimes.com/2012/12/17/dec-17-updates-on-connecticut-shooting-aftermath/#autism

http://diversityisart.wordpress.com/2012/12/17/reblogs-and-thoughts-about-tragedies/

http://crackedmirrorinshalott.wordpress.com/2012/12/17/i-was-one-of-the-scary-kids/

http://www.childmind.org/en/posts/articles/2012-12-16-after-newtown-why-amateur-diagnoses-are-dangerous

http://www.nytimes.com/2012/12/18/opinion/dont-blame-autism-for-newtown.html?_r=0

http://philadelphia.cbslocal.com/2012/12/17/health-asperger-syndrome/#respond

http://www.businessinsider.com/autism-empathy-and-social-cues-2012-12

http://www.autismspeaks.org/news/news-item/autism-speaks-responds-claims-linking-autism-spectrum-disorders-planned-violence

http://www.psychologytoday.com/blog/my-life-aspergers/201212/asperger-s-autism-and-mass-murder

http://www.slate.com/blogs/crime/2012/12/16/gun_control_after_connecticut_shooting_could_australia_s_laws_provide_a.html

http://www.blogher.com/we-need-talk-about-adam-lanza?page=0,0

http://www.blogher.com/ethics-publishing-i-am-adam-lanzas-mother

http://www.blogher.com/frame.php?url=http://sarahkendzior.com/2012/12/17/a-joint-statement-from-sarah-and-liza/

http://fumblingnormality.blogspot.com/2012/12/this-is-reality-and-its-personal.html

http://autismconsecrated.blogspot.com/2012/12/aspergers-in-news.html

http://www.kevinhealey.net/?p=2029

http://www.care2.com/causes/please-dont-pathologize-aspergers-syndrome.html

http://thautcast.com/drupal5/content/being-part-functional-community

http://alienhippy.wordpress.com/2012/12/18/asd-who-do-you-see/

http://autismplanet808.blogspot.com/2012/12/newtown-and-autism.html

http://joashline.com/2012/12/newtown-on-guilt-grief-and-gratitude.html

Monday, December 3, 2012

The Blog Ladies Need Some Links!

Gratuitous sleeping kitty picture.
And now, stills from our show on The Autism Channel!







Here's some topics we'd like to share with viewed (over 7,000 subscribers on Roku):

I'm covering Change and how we deal with it (autistic bloggers please share your posts of how your prepare and handle change!)

We'd also like your how to handle holidays posts!

Your feedback and suggestion for topics you want to see covered would be tremendously helpful. We have a huge opportunity here to bring the best of the online world to the tv viewing world. Controversies are fine, as long as what we're sharing is constructive. Is it thoughtful, is it respectful? And hey, let's cover whether those two criteria are necessary--what if the message is important but worded in a way that doesn't quite meet the respectful? Do we have any right to argue that someone's tone is more important than the message? Should the message be the most important thing? Shouldn't it? 

Your posts on this topic, your thoughts on it would be incredibly beneficial. Do you video blog? We can showcase your blog and highlight  your video. 

Inundate us! The more ideas you give us, the more we can share relevant topics with the community and increase the conversation.

Thank you! Our bloggers are the bedrock of our show. 

Thursday, November 29, 2012

Fumbling Thru Autism Guest Post


Please click through to read the rest of Blue Paint.

“Want to dooo bluuuue paaaaaint!” I have heard my daughter Beth, who is almost 5 years old, make this request hundreds of times. I grab a role of paper towels from the kitchen, roll up my sleeves, and head to the den where her much-loved and often-used easel sits.
We start the well-established paint process. “Okay, what do we need first?”, I say to Beth. “Your smock!”, she says excitedly. I prompt her to reverse the pronoun and she exclaims, “My smock!” I help her put on the smock and help her to ask for the brush and paint cup. Then I ask, “What color paint do you want? Red, blue, or green?”  ”Green,” she says. I stop dead in my tracks. For 2.5 years the answer has been blue, so the answer green comes as a great surprise.
I repeat the paint choices in a different order and, again, she chooses green. Wow, she is finally starting to move on from blue paint. Like every parent, I feel a mixture of excitement, pride, and sadness at a milestone achievement. But unlike many parents, because Beth has autism, some of the milestones I celebrate are a bit different than the norm.
To mark the milestone, I decide we must make a painting that I will call “Homage to Blue Paint” to capture this bit of her childhood before she moves on completely. I have had this painting in my head for about a year. I want it to show Beth being herself, my expectations of parenting Beth, and the merging of my neurotypical world with her autism world. It sounds complicated, but it is simply one part Beth, one part me, with overlap in the middle.

Sunday, November 25, 2012

Guest post-"Everything starts with an A"


  "How do you make it work with children with autism in the family?




I am often surprised by how differently other people live their lives. They can do some really nifty things that are totally alien to us. I'm not criticising or complaining - I am just genuinely in awe of the differences when I notice them. By "other people" I mean families who don't have autism as an ingredient. Neurotypical families. Of course I know that there really is no "normal" - life's rich tapestry and all that - but I am increasingly less aware of our differences unless I really think about them.

Here are a few of those things:
People can "pop" to the shops with their children without giving written notice.
People can attend parties and gatherings and their children merrily fit in with other children and look after themselves at these occasions.
Their children happily eat things that come from the earth or the tree.
Their children do after school clubs or go to childminders without it causing a nuclear explosion at home later.
Their children occupy themselves.
These families can go for a walk on a beach and actually keep on walking without stopping to examine every grain of sand or to fill their wellies with sea water!
These families can do a fun leisure activity that everyone in the family enjoys at the same time - together - all of them...

The list could go on and on. The fact of the matter is that these things seem like little miracles to me. I have no idea what "normal" is these days and, although there is no real "normal" there are a lot of societal expectations of children that are mostly do-able by "normal families": your child will ride a bike, have/attend and enjoy birthday parties, keep his clothes on in public, not make a "scene" after the age of 6?, play football, like going on playdates etc etc

And here's the thing: when you have one/two/three?? etc people on the Autistic Spectrum in your family, it is helpful to learn, pretty early on, that if you aspire to this type of "normal" then you will have a whole truck-load of unfulfilled expectations to bite you on the bum!

A wise woman recently said to me "Don't compare yourself or your family to something that is totally unachievable". This small nugget is possibly one of the most helpful things anyone has ever said to me and I realised that most of the times that I've felt desperate and heartbroken about my children's autism, I had been comparing my family to something that we can't be. That's not to say that we can't be amazing in our own way - my boys totally rock and I love them for exactly who they are. We are just never going to be a Neurotypical family.

In answer to the title of this post, I think that learning to discount the "normal" is the first and most important part of making life work for families with children with autism. Of course every family is different. Every autism family is different too so it's horses for courses here. I can only tell you about what helps us to make life work because some of it we've learnt the hard way and I wish someone had told me some of this when we started out on this journey.

So here goes:

Do what works for your familyFind your own pace of life - the pace that suits your children and you. As much as it would be lovely to attend all parties/weddings/bbq's/bar mitzvahs/concerts etc, if it's really not going to work for your kids, then find a way to do a little bit of it and avoid the rest. I'm not saying that all things that would be challenging should be avoided totally, but, if spending an entire day at a family wedding is going to be like Dante's Seventh Circle of Hell for all involved, then find a way to do a bite-sized chunk of it with your child/children that will be achievable and enjoyable. The worst mistakes we made early on were pretending that we could manage these things and causing J/G and us excruciating amounts of stress and a whole load of knock-on anxiety to boot.

I do sometimes feel that my little family are in one of those videos where we are operating at normal speed and everyone around us is speeded up. But that's ok because that works for us. I'm not saying that that doesn't scald and hurt sometimes, but the alternative - constantly running to keep up and causing my kids large amounts of stress - is much worse than the occasional (and getting rarer) feeling of being left behind by the world.

The next thing that I think is important is to always follow your gut feeling. There are so many autism experts and so much information and advice - a lot of it conflicting - out there. It can be so confusing. I recently saw a video on YouTube about the "biomedical" approach to "cure" autism. It all makes such perfect sense when you watch something like that. But when we looked into that approach a while back and discovered that we were going to have to part with hundreds of pounds a month and force 20 different food supplements into J, who is not into any unapproved food items passing his lips.... Well... gut feeling says "NO". My gut feeling says a big resounding "YES" to never letting my kids feel like they're "broken"; to concentrating on all the brilliant things that they can do, not the things that they can't do; to never saying never; to reading and learning all the time and staying open to suggestions. My gut feeling said "Bring it on" to filling my house with dogs and cats because they have such a positive effect on all of us (and because we are at home rather a lot - taking it at our own pace, remember!) My gut feeling (yes, it IS a big gut to have all these feelings!) was that money would be wisely spent on Occupational Therapy for J - as long as it is Sensory Integration OT (more in another non-gut-related post). Basically, unless your gut feeling tells you to gorge on gargantuan amounts of chocolate, it is probably correct.

Visuals Visuals Visuals! Autism is a visual thing. Spoken words can be overwhelming at times. We always use visual schedules with J even for the little bits of life that seem obvious. Now that J can read, we do written lists with little sketches to back them up. A Saturday visual might be: Play at home - At 10:30 get ready to go to the Library - Walk to the Library with Mum - Chose a book - Walk home with Mum - Have lunch - Play - At 14:30 take Claude for his walk to B Park - Home for Dinner, Play, Bath, Toilet and Bed. It works for us. More complicated outings have separate, more detailed visuals.

Remember the Importance of Solitude to people on the Autistic Spectrum. Solitude is a great healer. When the proverbial hits the fan, quiet time on their own, doing something that they like, is the biggest restorative. I found this hard to accept, initially. A Mother's instinct is to "fix" and hug and soothe. I now know that solitude needs to come before these other things.

Remember that all behaviours have a root cause. My kids don't wind me up for the good of their health! If J suddenly starts biting himself or me, for example, there's normally a reason. Last time it was a wobbly tooth that he didn't know how to get out.

Look after yourself! OoOh I am bad at this one. But it is so so important. If I am operating on one spluttering cylinder, then I am rubbish at being a mum to my boys. I need time to be me sometimes - loud music and dancing and just being without being needed. Vital. I've also found a brilliant counsellor who I can see whenever I feel the need to "explode". Sometimes, I only need to see her every couple of months. Sometimes, when things are all a bit much, I can see her weekly. I can't begin to tell you how much this helps!

Remember that even if something has always worked before, it can all change at the drop of a hat! It's really good to be prepared for this - it took me by surprise the first time. Things and routines that seem totally set in stone can suddenly become defunct. Something else will always come along though...


Active Acceptance - as opposed to Passive Acceptance. I think that's what mostly what I'm banging on about. By "Active" Acceptance I mean that we are constantly learning more about our boys' autism. Reading, researching, trouble-shooting when things go wrong, tweaking, encouraging, pushing their boundaries. We are looking to the future, but never saying never. Passive acceptance would be using autism as an excuse to shut down and blame everything on the big bad A.


So. How do YOU make it work with children with autism in the family? I'd love to know how everyone else does it. I'm open to ideas and suggestions......By "making it work" I mean "functioning"/"enjoying being a family"/"having a good giggle now and again"etc etc. We're still learning all the time - we most certainly don't get it "right" every day of the week but we're getting closer to finding out what we all like and what we all need to be the Hughes Family and we're doing ok!

Monday, November 12, 2012

What Would You Like Us To Cover?

Kathleen and I are so pumped that our initial interviews with Dan Heinlein on I Am Autistic went live this weekend on The Autism Channel (available on Roku).

Photo: This week see a special I Am Autistic show with Daniel Heinlein talks with The Blog Ladies, who's show premieres later in the week!

In our first time on the air, we discussed the industrial bleach "cure" going around, Simon Baron-Cohen and Rachel Cohen-Rottenberg's rebuttal. We talked about inclusion and rejecting excluding the various voices in the autism community, how important we believe diversity is, and how the most important voices in the autism dialogue are the autistic voices.

We've covered some issues in upcoming segments, but we'd like to know what things y'all would like to see covered.

Are you an autistic blogger with an issue in the community you'd like to see us cover? Have you written a post on that issue? Do you know of other voices (like I did with guardianship) covering the same issue from a different perspective?

This is our chance as autism-related bloggers to make sure the things we care about are brought up for a more general audience, our chance to get voices heard, to direct people to you, our bloggers and friends.

We look forward to reading your ideas and getting your links. Thank you, because without you, well, we wouldn't be talking about blogs, would we? We can always fall back to talking about scrapbooking chickens, which could be interesting, but I think you--your voices, your thoughts, your interests are far more important and far more interesting.

Monday, November 5, 2012

A Look at Some of the Segments

Guardianship:

Kim Stagliano: http://www.huffingtonpost.com/kim-stagliano/autism-research_b_1926901.html

Kim Wombles: http://kwomblescountering.blogspot.com/2012/10/have-little-faith-standing-together-or.html

Susan Senator: http://susansenator.com/blog/

Liane Kupferberg Carter: http://www.huffingtonpost.com/liane-kupferberg-carter/adult-child-autism_b_1390123.html
Autism After 16: http://www.autismafter16.com/content/huic-nostrud-typicus-ratis-quadrum

Lucas Works: http://www.lucasworks.org/autism-preparing-adulthood.html

Empathy:

Rachel Cohen Rottenberg's Autism and Empathy: http://www.autismandempathy.com/

Interview with Simon Baron Cohen: http://www.science20.com/countering_tackling_woo/interview_simon_baroncohen_zeroempathy_autism_and_accountability-79669

Rachel's Rebuttal: http://autismblogsdirectory.blogspot.com/2011/07/interview-with-rachel-cohen-rottenberg.html

Baron Cohen's Rebuttal: http://autismblogsdirectory.blogspot.com/2011/09/simon-baron-cohen-replies-to-rachel.html

Self-Diagnosis:

Autism Jabberwocky: http://autismjabberwocky.blogspot.com/2012/10/whats-wrong-with-diagnosing-yourself.htm

http://autismjabberwocky.blogspot.com/2010/11/hazards-of-self-diagnosis.html

http://communities.washingtontimes.com/neighborhood/autism-unexpected/2012/jun/20/why-how-pursue-adult-autism-diagnosis/

http://paulacdurbinwestbyautisticblog.blogspot.com/2012/10/the-big-and-ableist-difference-between.html

http://tal9000.tumblr.com/post/26721339079/presenting-how-to-safely-and-accurately-self-diagnose

http://www.stuartduncan.name/autism/i-have-aspergers-part-1-who-i-am/


Sunday, November 4, 2012

Get Ready for The Blog Ladies (Kathleen and Kim)!





WE'RE HERE!!   This week "The Autism Channel" will start airing "The Blog Ladies"!! A show featuring both Kim and myself discussing all things autism via blogs. Thanks to everyone who participated in "Calling all Bloggers"..The posts that you sent or recommended were wonderfully helpful in putting together our shows. We hope that this brings lots of traffic to your sites. Please stay tuned as we will be asking for more.  But until then-Got Roku?  If you do-sign up for  "The Autism Channel"  You will find us-and a whole bunch of other great shows. It's a positive place-where everyone is included. You can also find out more on Facebook. Come on over and check it out.





Wednesday, October 17, 2012

Guest Post by Autistic and Awesome

Autistic and Awesome has written an interesting piece on facilitated communication. Much of the criticism of FC comes from the scientific and medical fields, with much of the support coming from various universities, like Syracuse, and autism organizations.

In recent months, it's become apparent that FC, despite continuing evidence that it's facilitator co-option, is increasing in popularity in the autism community. It's not an easy thing, in the midst of bloggers who wholeheartedly support FC users, to continue to call foul on FC and the facilitators who are all but ensuring their clients never learn to communicate authentically.

Autistic and Awesome's post can be found here.  This is an excerpt of this must-read piece.

In the autism community, there is a magical world of make-believe.
In the magical world of make-believe, non-verbal autistic children who had received no education in the three R’s, reading, writing, and arithmetic, or anything else either, suddenly know how to use complex language to communicate their complex thoughts and feelings as soon as someone shows up to move their fingers around a keyboard, the bester to rescue them from their trapped existence in their miserable prisons, their bodies that motor fine for many activities requiring fine motor skills, but typing on a keyboard not included.

It should be remembered, if it's too good to be true, it generally is. Critical thinking, skepticism, and a desire to protect the rights of all individuals to learn at their own pace are must-haves in the autism community.

Sunday, October 7, 2012

Calling all bloggers 2

 Hey everyone-I hope that this post finds you all well.  We had a lovely turn out for our last "calling all bloggers post"-thank you all for your help.  As you may have heard-both Kim and myself have become a part of an exciting new project..  We are hosting a show called "The blogger Ladies" on this new autism television channel. What we do is discuss various autism related topics people have blogged about-and then direct viewers to some of the blog posts relating to those topics. We also provide on screen links to the blogs themselves.  Right now, we are still making some adjustments so that we can do the best show possible.

  I think that it is important for you all to know- that we do not critique, dissect, or criticize your posts on air(or at all!).  This is a positive show. What we do do is this-if we are discussing a certain topic we would say something like "blogger name" wrote a funny/insightful/interesting etc. post over at "blog title" here is the link. We would like to provide as many points of view as possible.

  Once again, we are looking for specific topics. (if we are repeating a request-it is because we need more posts)  Here is what we are talking about now-

GFCF diet-pro and con

Shopping-either with kids on the spectrum.  AND As an adult on the spectrum. What is bothersome?  What helps? How do you plan?

Pets/service animals-How does having family pets help-or hinder?  Do you have a service animal? What is that like? How did you go about getting one?  How do people treat you and your service animal?

Military families-how does serving in the military affect getting services.  Do you move a lot?  How does that impact you-or your kids?  etc.

Again-this doesn't have to be your own post.  It could be one that you found to be helpful/insightful/or just made your day.

Thanks so much for all your input.  Both Kim and myself very much appreciate it.

Guest post: American Military Families Autism Support



Guest Post:  AMFAS update.  This is for military families by military families..  This is chock full of links and opportunities for those of you serving in our military.


The air is becoming crisper and the trees are starting to change color, meaning it’s been a year since we put out our last AMFAS Status Update for Fall. We hope everyone is getting ready to start toward the holiday season very shortly.
Since our beginnings in 2008, AMFAS was established to lead the way in supporting our military families as a true collaborative effort. Because of the importance we put on transparency, it’s vital to give a status update on the AMFAS project and share some opportunities you in the community have to help the only organic (by military families) national grassroots effort specifically focused on Autism Spectrum Disorder.
Email list
Earlier this year we started setup of our subscription service but have put off implementing it until this point. Our plan is to start sending out weekly updates on AMFAS-related information to help families keep up to date. You can signup at AMFAS.org or by sending an email to subscribe@amfas.org to be added. People who register on the website are automatically added.
Facebook and other Social Media
If you’ve been on our Facebook page recently, you might have noticed we passed 2,500 community members. This is quite impressive, if you contrast this to other pages with large number of followers, where they are begging anyone to “like” their page. AMFAS policy is we will never pander for a “like” but do ask that you invite military families or others who can benefit from our community to visit. Keep asking questions, sharing information and making suggestions on how we can continue to better our community.
We still have our TwitterGoogle +TumblrYouTube, and earlier this year added Pinterest to our lineup. We will be putting more emphasis into these in the near future.
Website
Last year we launched the AMFAS website, finally finishing what had taken a number of years to accomplish due to work and military requirements, battles with schools, behavioral issues, family obligations and numerous site platform changes. This is still a work in progress as we strive for continual improvement. The site is designed and put together by military families. Much like a special needs diet recipe, you just can’t go out and buy everything already put together like others have done. We refuse to, simply because it’s about putting your heart and soul into the effort and there are many areas we focused on.
Now we’re getting ready to improve on what was built with the next update. This time we are keenly focused on the AMFAS Experience, how each of our areas are complimentary to each other and the benchmarks we conceptualized when the project was started.
Some areas we are working on include finally launching the AMFAS News Service, upgrading the AMFAS Groups content by adding pages and contact information for each group, better integration of the many community functions already on the site and providing a sleeker, safer, stable location for military families and those who support them. Our goal all along has been to create the community area where your information isn’t harvested for profit like other social network websites, because we believe in military families helping military families.
Resource
If you haven’t used our Worldwide Installation Resource, take a look. There are currently 1,084 listings and 533 categories in our website, including all EFMP offices, CDCs, EDIS offices and main installation listings for every base worldwide. Anyone registered on the site can add, rate or review entries around any installation worldwide. Our listings are a bit different since we focus on providing information centric to installations where our families will move to.
Businesses like ABA providers, merchants and support providers are welcome to register and list their businesses as friends of AMFAS. This process was originally meant specifically for ASD support but many of the support areas are applicable to all special needs. . We’ll be upgrading some of the features to make searching easier and streamline the look and feel with the rest of the site.
Military Bloggers Support
It’s now been a few years since we started AMFAS: The Blogs and our numbers continue to grow. We now have 30 bloggers featured with 2,344 posts available for viewing. What’s unique about this effort is that this site is our way to promote these military families. People visiting the site can keep up on the latest blogs all in one place, with all links to articles going directly to the specific blogger’s pages and help showcase them. So far in 2012, this effort has 8,739 visitors looking at over 69,000 pages of blog posts and accounting for 2.21 GB of bandwidth.
AMFAS Groups
Last year at this time we had nine AMFAS Groups setup. Last week we brought our 25th online. We have consolidated the look and feel of all groups for cohesion and implemented guidance for Group administrators to optimize support at the local level. The links below are for the Facebook versions of the groups. If you live near, know someone near there or might be PCSing there in the near future, you need to join in as a member, a team lead for your community or even an AMFAS Ambassador who represents AMFAS in local outreach to improve community support for our families.
Alabama -AMFAS Alabama Group
Arkansas -AMFAS Little Rock Group
Alaska -AMFAS Anchorage Group
California -AMFAS Bay Area Group (San Francisco Bay area)AMFAS Edwards AFB GroupAMFAS San Diego Group
Colorado -AMFAS Colorado Springs Group
District of Columbia/Virginia/Maryland -AMFAS Washington DC- Capital Region Group
Florida -AMFAS Ft Walton Beach Group
Hawaii -AMFAS Hawaii Group
Illinois -AMFAS Scott AFB Group
Kentucky -AMFAS Fort Campbell Group
Maryland -AMFAS Fort Meade Group
Massachusetts -AMFAS Boston Group
Nebraska -AMFAS Offutt AFB Group
Nevada -AMFAS Nellis AFB Group
New Mexico -AMFAS Alamogordo Group
New York -AMFAS West Point – Stewart ANGB Area Group
North Carolina -AMFAS Ft Bragg / Pope Field Group
North Dakota -AMFAS Grand Forks Group
Pennsylvania -AMFAS Harrisburg Group
Texas -AMFAS Dyess AFB GroupAMFAS San Antonio Group
Virginia -AMFAS Hampton Roads Group
Washington -AMFAS West Puget Sound Group

Opportunities
If you would like to volunteer to help AMFAS better support our families, it’s time to take action. Tell families who are in our boots that this is available, invite your EFMP coordinators to visit and learn more about real issues being faced by our military families and offer ideas and input into making our community better.
If you would like to volunteer in any capacity, send us a note to info@amfas.org and tell us what your interests are related to autism and any experience pertinent to helping the community online or locally. AMFAS is not about raising money, being the most popular people or putting our name in lights. We need team-oriented people with passion, not an agenda.
If you want to represent AMFAS in your area, consider becoming an AMFAS Ambassador. Send an email to ambassadors@amfas.org.
If you are a business owner or know of those who are not military families but want to support our cause, we are starting a Friends of AMFAS program to help partner with support agencies, including other nonprofits to better our effectiveness in helping families. Send an email to info@amfas.org.
If you would like to start an AMFAS Group near your installation, either ask on Facebook or send an email to groups@amfas.org.
If you want to add your personal blog to our blogging community or would like to blog for AMFAS or write a guest post for feature on AMFAS, send an email to blogs@amfas.org.
If you want to make a difference for families volunteer to add local resources around your installation to ourWorldwide Installation Resource.
If you are a writer, photographer, videographer, love to make graphics or even blog or vlog, our AMFAS News Team needs your expertise. Send a note to news@amfas.org to get started.
You can also use this feedback form to contact us and tell us how you feel you can assist in this project. Everyone who pitches in can make a difference for our families.  Remember, there are plenty of Special Needs support groups and websites out there for military families. AMFAS is the only one of this type specifically for military families dealing with autism. It’s about all our families.

Friday, September 7, 2012

Guest Post: A Few Things It's Best Not to Say to Parents of Children With Autism



Nobody's perfect. Especially me. We all say things that can be misinterpreted by others at times - stuff that we don't really mean or haven't fully thought through. Things that are well-meant but that can inadvertently make the recipient feel awful. Some people have a need to fill in the gaps - say fluffy stuff to keep the conversation going - or to try to "fix" the other person and make them feel better. A very titchy minority of people are just plain nasty. We're all guilty, now and again, of listening to others with our own agendas playing at full blast over what they're saying. Some people just think that the less said, the better!

Social interactions are full of nuances and expressions and body language. X says "blah" and Y responds with "blah diddy blah" but if the correct intonation or body language isn't employed than we can all get into a terrible pickle.

I'm sure that most things that people have said to me or any other parent on the subject of  our children with autism have been pretty well-meant. On the whole, people want to understand, to listen and to share in our highs or empathise with our lows. But there are some things that people say that, however they are meant, just get me where it hurts. I knew very little about autism before I met my children. Generally people are slightly better informed these days but, unless you live with someone with autism, there are just some things that should fall into the "Approach with Caution" category. I would, however, hate to think that people are walking on eggshells when talking to me about my boys so I've made a little list of the things that are better not to mention when talking to a parent of a child with autism. And I've thrown in a couple of do's too because nobody likes a whinger!



You look tired
Not particularly helpful but thanks for noticing. Yes I am tired. I'm knackered. And so would you be if your child was awake half the night and then you were constantly on red alert, never able, for safety reasons, to just leave your child to his own devices.

There are so many children with diagnoses these days - I don't understand why so many people want a label.
You think I got my children labelled for the good of my health? Hmm. Well actually I wanted to get my kids the help they need from as early on as possible to give the chances they deserve.

He looks fine - if you hadn't told me he has autism I'd never have known
Autism is an invisible disability. It's all the bits that you can't see like the extreme anxiety that give it away. But did you not think the flapping and screeching was a little suspect?

Did you give him the MMR - we gave our kids separates
Well done. No I did not give him the MMR.

You are amazing - I couldn't do what you do.
Thanks. But I am not. I am doing what any parent would do which is my best. Of course you could do that if you had to.

He'll get better as he gets older.
Sigh. No. Autism isn't an illness. It won't just go away. Some things will get easier for him. Some things will get harder.

He'll sleep when he's tired/ He'll eat when he's hungry
Both statements are false when talking about autism.  Some people, particularly people who've had their own children, like to put their experience of what their children did onto all children.

Oh yes my child does that too
Yes I'm sure he does but does your child do this this this this this this this and this too?

They're all brilliant at maths
He has splinter skills - some way above the average and some way below. While J does not have any academic delays, autism is still referred to as a Learning Disability. It's all well and good being able to do your 143 times tables but if you can't tolerate sitting in a roomful of people.... Not all children with autism have superpowers.

Have you tried ear defenders/lavender oil/etc
Sigh. Did you really think I hadn't thought of that when J throws himself to the ground screaming every time he hears a siren. And, believe me, I've tried nearly every sleep aid known to man - I would sacrifice lactating porcupines in his bedroom if I thought it would help him.

Wow, I wish.... could read as well as J can
Thanks. I wish J could live comfortably in the world and have friends.

You needn't have worried - he's fine at this party/dinner/gathering
That'll be those hours of preparation and visuals and the fact that Dave and I are tag teaming him constantly while we're here and unable to give anyone else - including our other son - our attention. And then when we're safely back home, the fall-out from all that stress will commence in full.

What's his name?
He's standing right here - ask him!

Our friends did a Gluten and Casein-free diet/Sonrise/Tantric Cat Bouncing/ whatever  - and their child is totally cured.
I'm happy for them but I don't believe autism is cureable. I have tried the diets but my walls looked like the Turner Prize after a week of gobbing and puking. And that toad-therapy course in Kazakhstan is a tad too expensive.

That child needs a good smack.
I hope that you are reborn as a dung beetle.

My son shouldn't be here - it's like a lunatic asylum
Oh. Did you actually mean that my son and all these other children in this ASD specific nursery that your son is attending are lunatics....! (a mother really did actually say that to me!)

We didn't invite G/J to .....'s party (which happened 2 weeks ago and you've already heard about from everyone else) because we knew he wouldn't want to come.
Ouch. I'm sorry that we are party poopers but please invite them if you're inviting the whole class anyway and then let them say no.

And my least favourite:

Autism? Never heard of it.
Do you actually live in the silt at the bottom of a pond?

And now for the Do's. It's not all negative. There are plenty of things that are ok to say to a parent like me. So here are a couple of examples:

Do you want a glass of wine?
Yes

Do you want another glass of wine?
Yes

Another?
Yup

Thursday, August 9, 2012

Why people on the autism spectrum make good workers


Guest post by John Mark McDonald
 
            I just want to let you in on a few things that you may not be aware of. The autism spectrum is much larger than people know. There are people on the spectrum that are some of the leading geniuses of all time. People on the spectrum are already in critical positions that help keep our nation’s economy afloat. Employing people on the spectrum is not about charity; it’s about finding the right person for the job and keeping them there. As a matter of fact, you probably already know people who are doing important jobs whom you were not aware were on the spectrum.
            Autistic people tend to have several characteristics that make them able to do certain jobs better than your average worker. Some of these qualities are: organization, creativity, superior memory, hyper-focus, calculation ability, routine-focus, and brutal honesty. I’ll try to some personal and general examples of each of these. Now, sometimes these extraordinary abilities can come with a price, and I’ll point this out as well.
            People on the spectrum have a need for things to be organized. If I walk into a store and the shelves are messy and disorganized, it truly bothers me. It bothers me enough that unless I am restrained, I will spontaneously start organizing them (my wife would frequently chastise me with the phrase, “you don’t work here,” whenever we were out shopping.) The right person on the spectrum will keep your inventory organized far better than the average worker without having to be asked or reminded.
  • Downside: Organization is often not optional and can be confusingly inconsistent from an outside perspective. Having things out of place can leave a person on the spectrum distracted and confused until things are put in the “right” place.
  • People you may know: If you have run across a person that can keep an entire store or warehouse organized and always seems to know where everything is without having to look, this person is probably on the autistic spectrum, even if they don’t know it themselves.
            Creativity is also a hallmark of people on the spectrum. We tend to look at things from a slightly different perspective than the average worker, which allows us to do things that can really catch the customer’s attention. Eye-catching displays, memorable slogans, more efficient ways of doing things, and even new products and services that add to your business are things that someone on the autistic spectrum can bring to your business.
  • Drawback: Creativity is a very hit or miss thing. Sometimes even the best seeming ideas just don’t pan out. Also, autistic people can sometimes get stuck on an idea that turns out to be unworkable. A frank discussion may be needed to get us to move on.
  • People you may know: Most new products are created by people on the spectrum as well as things like logos and artwork.
      Superior memory is one of the most useful of the autistic “quirks.” People on the spectrum often become fascinated by something and will quickly become an expert in whatever that is. This often leads to an encyclopedic knowledge that can give you your own in-house expert.
  • Drawback: The subject has to “catch our attention,” and this is not really voluntary. It either fascinates us or it doesn’t. This type of memory is also extremely quirky. I can remember amazing amounts of historical data but can’t remember the names of people that I know quite well. Warning! If we start talking about a subject we love, we can talk for hours.
  • People you know: If you know someone who knows everything there is to know about a particular subject, they are most likely on the autistic spectrum.
      Hyper-focus is another ability that can be very useful to an employer. Hyper-focus allows the person to become completely absorbed by the task at hand and to then do it at an amazing rate for long periods of time. I remember doing an inventory once where I got into hyper focus and I started going so fast that the other people could barely record what I was inventorying in time.
  • Drawback: When someone is hyper-focused they stop noticing anything else around them. It’s often difficult to get their attention and they may not notice you even yelling their name in their ear. Another problem is that they can forget about their physical needs like eating, drinking or taking bathroom breaks and have been know to collapse exhaustion or dehydration when in this state. Having a supervisor or co-worker look out for them and make them take breaks nay be needed.
  • People you know: Artists are especially known for getting into creative “moods” where they will go on marathon creative streaks and forget about things like eating, sleeping or personal hygiene, but turn out amazing works.
      Some people on the spectrum have amazing calculation and mathematical abilities. These people seem to eat and drink numbers. Because of this people on the spectrum make some of the best bookkeepers, accountants and auditors around.
  • Drawback: No real drawbacks for this one.
  • People you know: If you know someone who is more comfortable with numbers than people in one of the above professions, that is a good indication that they are on the autistic spectrum, although they may not know it themselves.
      Similar to the need for organization is the need for predictability. This most often manifests itself as a reliance on routine. This can be very good in an employee as they tend to be always on time and get things done in a set predictable pattern, which they never tire of. While most employees might find this boring, they find it comfortable and reassuring.
  • Drawback: People who take comfort in routine predictability have a hard time with unexpected major changes. The more warning they have, the better they can accept the change.
  • People you know: Anyone can get into a rut, but there are people who have no interest in getting out of theirs and in fact, get quite upset if their regular rhythm is disturbed.
            Brutal honesty is also a common trait among autistic persons. People on the autistic spectrum tend to remember things by how facts and images relate to one another. If you ask a question, they will answer with the relevant facts. This leads to a straightforward and literal answer to the question asked (which can sometimes be mistaken for sarcasm or aggression.) The tendency is to say exactly what they mean and mean exactly what they say. 
  • Drawback: Tact does not come easily to someone on the spectrum. An offhand question that is asked suddenly will usually get a brutally honest answer. Not that people on the spectrum are incapable of lying, but it is difficult to learn and reluctantly used. People on the spectrum do not tend to use subtexts or implications in their speech and do not usually recognize it in other’s speech. (i.e. hints and sarcasm are often lost on them which can lead to misunderstandings.)
  • People you know: People on the spectrum make very good if hard-nosed judges and law enforcement officers.
           
            All in all, people on the autistic spectrum make very good “niche” workers. They are very common is positions like IT, engineering, and accounting, and are often successful in these and similar roles as well as artistic areas like actors and writers. The one caution is that we are very specialized workers: we can do some things better than anyone who is not on the spectrum, but the price we pay is in generalized abilities and social interactions.
            If we are pushed to do the things that we find painful because “anyone can do this,” then the same thing will happen that would happen if you used a cell phone for a hammer, it would break. It doesn’t mean that the cell phone is defective; it’s just being used for something it’s not designed for.
            Similarly, we have trouble with social pecking orders and socialization. If you push one of us to act “just like one of the boys,” it will end in disaster. We are also especially vulnerable to bullying and social sabotage. I have more than once gone from the top employee to fired because of a new person that was uncomfortable with me began spreading rumors and accusations, and every person on the spectrum that I have talked to has similar stories. All it usually takes for this to stop is a word to “leave them alone and let them do their job.”
            Last of all, I want to remind you that the autistic spectrum is wide. It goes from people like the character “Rain Man” who needed help to be able to survive to people like Temple Grandin, who is a world renowned expert in her field to entertainers like Dan Aykroyd and Daryl Hannah. Not every person on the spectrum has every one of these abilities and weaknesses but put one of us in the right position and these abilities will amaze you. 


Scincerely, Scintor  AKA
John Mark McDonald
scintor@aol.com

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