Tuesday, April 30, 2013

Book Review: Chicken Soup for the Soul: Parents Writing Inspirational Stories about Raising Kids on the Spectrum

Chicken Soup for the Soul: Raising Kids on the Spectrum

Chicken Soup books are popular and cover inspirational stories ranging from angels to chronic pain, from dogs and cats to Canada. If there's a topic you're interested in, they most likely have a book for you.  Unless you're on the spectrum, so you might want to email them and tell them that the next book needs to be inspirational stories from autistic individuals because autism isn't just about parenting autistic children. 

Not every book can deliver every angle, so criticizing this book for not including autistic voices would be unfair and inaccurate: Jean Winegardner is both on the spectrum and parenting an autistic child. And as we in the autism community are well aware, there are a lot of us parents with children on the spectrum who come to realize our own place on the spectrum.

This is a good book for parents to have when they're feeling down, confused, or weary. It allows for connecting with positive stories in a format where there's no opportunity for angry responses or trolls looking to bring people down. Blogging is great, and many of the writers in the book, including Kathleen, can be found in the feeds on this page, so it's like visiting friends in print form.

If you know a parent new to autism, then this is a good gift to give them. Let's hope that in a year or two, we'll also be able to give them a Chicken Soup book by autistic people, as well.

Sunday, April 21, 2013

The Book Kathleen and I Wish We'd Had

Last month Kathleen and I were asked if we'd review Dr. James Coplan's book Making Sense of Autistic Spectrum Disorders. I love its subtitle: Create the Brightest Future for Your Child with the Best Treatment Options.

If there's such a thing as an autism expert, Dr. Coplan is it and his book is the first book I'd hand new parents. New parents. Not just new parents to autism, but to all new parents. The first chapter alone is worth the price of the book. Far too often, despite what first time parents might read on the pregnancy and new baby websites and in traditional books, they are still often unprepared for what typical development and atypical development are. And with all the fear being spread about autism, it's likely to be the main concern new parents have.

Dr. Coplan's book is detailed and yet easy to read, has easily understood graphics that provide a quick overview of development, and explains autism in a way that is not focused on a deficit model so much as a difference model. His approach is a calm, accepting one and parents will not be terrified if they begin to suspect their little girl or boy fits the autism spectrum traits better than she or he does the typically developing model.

And because his book is no-nonsense and evidence-based, parents who read it before they go googling autism and finding those who are not evidence-based, there's a greater chance that parents reading his book won't panic, won't be desperate, will have a clear roadmap to getting diagnosis and approaching therapies and looking at outcomes. That, my friends, is priceless.

One of the biggest heartaches I've experienced over parenting in the last 23 years is the lack of a guidebook, no clear idea of what to do exactly, and having to find my own way, with some pseudoscientific stumbles along the way. It didn't help that the professionals I dealt with the last two decades were either doom and gloom or clueless, either.

I may be well along the autism path, with my oldest approaching his 24th birthday and the girls turning 12 and 10 this year, but there's still a lot to learn, a lot of growing up to do, and even though I've read countless studies, focused on autism in my master's degree, and read everything I can get my hands on when it comes to autism, I have to acknowledge I can't know it all, keep up with it all, and a handy guidebook to thumb through when I've got a question or am anxious is worth its weight in gold. Dr. Coplan's book will stay by my chair, where I can easily pull it out and thumb through it for hope, for comfort, for guidance, for my three kids. ---Kim Wombles


  I could easily just write "What Kim said" and it would be the honest truth. In the years that we as a family have been aware of autism, I have yet to find a book that helped to explain the many ways that autism can present itself.  A book that not only explained what was going on-but also gave valuable help as to what could be done-In a positive and matter of fact manner. Until now.

 Ten years ago, when my oldest was four, we were basically handed a diagnosis and a hand shake. Kind of  a "Here's your diagnosis-good luck with that!".. We relived the same experience two years later with our next child. I remember feeling so lost-and so very alone.  The doctors and other professionals we were working with seemed to know as little as we did-or did not seem to think it was worth our while to really explore any other options. There was so much that we had to figure out on our own-so many opportunities that I think we missed-simply because we did not know enough. The information was hard to find. 

  In some ways the world has changed since my boys were diagnosed.  There is much more information readily available-especially through the internet.  The problem is in figuring out what is good information and what is not. Having done this for so long-I really thought that I knew most of what there was to know. Until one of my daughters was diagnosed four years ago. I felt so silly for not having recognized it earlier!  As Kim mentioned above-clearer guidelines and a road-map is information that is priceless indeed. Dr. Coplan's book has it all.

  I would absolutely recommend this book to the parents of any child on the spectrum. It is direct, it is matter of fact and most importantly it is positive. It is full of useful and easy to grasp information for parents of newly diagnosed children-AND for veteran parents like myself. This book won't be collecting dust on my shelf.~Kathleen Leopold

If anyone is interested in learning more about Doctor Coplan-I had the pleasure of interviewing him earlier this year for the directory. 

Sunday, April 14, 2013

Guest Post: KATiE MiA/Aghogday

There is a 1 in 271 prevalence of Autism Spectrum Disorders reported in two Amish Counties in a door-to-door screen, from preliminary results of a study in 2011, as opposed to the 1 in 50 prevalence in the rest of the US, from a phone survey of parents for children actually diagnosed, a recent study supported by the CDC. 

Autism is diagnosed as not only symptoms characteristic of the condition, but also as one that impairs one in a major area of life functioning. Acceptance is an ongoing issue in daily life that changes by the moment depending on who one is dealing with. 

One cannot demand acceptance from one that chooses not to provide it, except when there are carrots and sticks that others yield to in response. People often act as if they accept their supervisors or other authority figures, but it does not mean they feel that way inside. 

I suspect that people on the spectrum are more likely accepted by others, in Amish Counties and contribute greatly to society, as there is often enough to do to keep everyone busy for basic survival. Along with enough social roles to fill in a close knit society. 

People in Amish Counties often do not do well in the larger world when they leave there to join the rest of the world. 

It is more likely the social stress of the larger world, which makes characteristics on a much broader autism phenotype, 30 to 45 million people just in the US, observed in every country and small culture in the world, a diagnosis in some cultures verses a continued broader autism phenotype in others. 

It is also potentially part of the reason that some folks, who are being diagnosed at 40 now, would likely be diagnosed at 20 now if born 20 years later because the social demands of this fast paced chaotic culture, now exceed capacity for fuller social adaptation. 

People do not usually get a diagnosis, unless they are having substantial problems adapting. They often remain on that broader autism phenotype. 

The DSM5 now defines Autism as symptoms of a broader autism phenotype that occur in early childhood but may not fully manifest as symptoms of an actual diagnosed condition until social demands exceed social adaptation. 

Every child, later diagnosed with Autism, starts on a broader autism phenotype first. 

There can be many associated factors that lead to the actual diagnosis, including superficial issues such as how the condition may be defined, how it is subjectively assessed, and awareness and accessibility of health care leading to a diagnosing professional. 

I do not think it is practical to use the term Autism for online communities. I like the phrase "neurodiversity communities" as a place where every person who feels "neurodiverse" can feel free to interact with others with an almost unlimited number of neurological differences. 

That is already the effective reality anyway, as many people have not made it to the point, where they feel the need or have access to healthcare to move from broader autism phenotype to actual diagnosis. 

That is as long as everyone is welcome, as is the case most often on some websites, like the Wrong Planet website, where people do not find themselves in the same larger world trap of unspoken political/social ideologies they are not accepted for unless they comply and conform. 

I think in Amish counties, overall, it is an issue of effective opportunity for and resulting social adaptation, which is often associated with acceptance from others. 

I think that overall that is what all social animals look for in life.  I do not generally observe people on the spectrum as anti-social animals. 

I think it is possible to legislate greater opportunities for social adaptation through employment and laws like the ADA. However, acceptance more often depends on social adaptation, which does not necessarily mean being a "social butterfly", as much as finding an environmental niche in a role to play as some type of contributing player. 

People are having a harder time adapting, so overall society is not working, as it should, at least for those who are having trouble adapting. 

Things are getting better for those most severely impacted by co-morbid medical conditions, but that is only a piece of the overall adaptation pie that exists from birth to death. The other pieces do seem to be harder to find for some now than they used to be. 

The result of that is the expansion of people identifying with Autism as a source of online acceptance. That expansion currently, is not effectively inclusive enough for everyone looking for that acceptance on a much broader autism phenotype or what others refer to as "neurodiversity". 

This is a potential source of conflict that exists between some parents of children on the spectrum and other people identifying on a spectrum. They are most often on the same team of a broader autism phenotype, and at times cannot clearly see that commonality, in each other.

Additionally, they are most often looking for the same thing for themselves, support and acceptance. That will probably eventually change for the better online, as the basic opportunity for social adaptation and acceptance in the "real world" does not appear to be moving in a positive direction. 

The Sequester is near evidence of that future. So is increasing avenues of online participation among those identifying with Autism as not just a diagnosis, but also a way of life. 

I think it is unfortunate the potential reasons why the prevalence rate of Autism is much lower in Amish counties cannot be fuller explored by research, because, at least in part, it has become politically incorrect to do so, over the unwarranted vaccine concerns. 

I think this type of research could go a long way in helping people on the spectrum. I provided that comment in the last congressional oversight hearing, as a written one, but the results of that hearing in the continued focus on unwarranted mercury fears, continues to drown some of the valid concerns and efforts that could potentially help people now. 

I believe that offline connections, which do not currently do well past support groups in large cities, are the first step to a larger "real life" community of people on the spectrum. However, I think that part of the reason that the offline connections do not happen, is because the opportunity for online ones continue to expand dramatically. 

In addition, this certainly is not an issue specific to people on the spectrum. 

Most ironically, it could be part of the overall issue of what leads to a diagnosis in the real world for some, moving from that broader autism phenotype to a diagnosed spectrum. 

It is in some ways potentially a "catch 22" situation. 

I had offline connections with people on that broader autism phenotype through most of the course of my life through school and work. 

There were no labels then, however as I look back those people were always there. Those same opportunities I had in my historical field of work I could depend on with job security no longer exist. 

For many reasons, my field of work was a magnet for people on that broader autism phenotype that one could observe nationwide. Effectively, my workplace was a "Neurodiversithy Community". 

One of my co-workers did the "flapping stim", where my "stim" was a religious routine of vigorous exercise.

I never made the connection in his "flapping" and my exercise routine until it was pointed out as a “stim” that some people on the spectrum share. 

There is no description of "flapping" in any diagnostic manual. The only place one can usually find a description is in online autism communities. Alternatively, as was in my case, a real life observation in my "Neurodiversity Workplace". 

I never came across anyone "flapping", in school that I can remember. 

The people have not changed that much but the opportunity for "Stims" has. The idea of sitting still was horrifying to me in the workplace, behind a desk job, as I was hyperactive, now identified as ADHD. 

I might have eventually "flapped" too, as when I was finally trapped behind a computer; I had to do push-ups to release frustration and tension, and eventually succumbed to problems with hypersensitivity to light and sound. 

In trying to explain that to an elder co-worker, also obviously on a broader Autism phenotype, her response was stress does weird "s**t" to you. 

There is now research that shows dysfunction of the stress response and adrenaline associated neuro-hormones, is associated with sensory integration problems. 

I think this is part of the issue for people who are young that are under a level of chronic stress that I cannot imagine in a rural town, with a short walk to a small school, without even stimulation from a TV set. 

For all practical intents and purposes, I grew up in something similar to an Amish County, and my ancestors more so. 

That is how culture used to be for thousands of years. 

People were closer to the earth in hunting and gathering, and/or agriculture. The old order of "Agri" Culture is in many ways like Amish Culture. 

Some of the answers seem blatantly obvious to me because I have experienced so many different perspectives in just one life. 

People now are often born in to an environment of one full serving of cultural complexity on one plate. The yearning for a place where people can successfully adapt is at the crux of many of the problems of modern civilization, I think, and again this is certainly not an issue specific to Autism. 

However, I do think that people on the spectrum are among the effective "Canaries in the Coal Mine", per inherent propensity toward these greater difficulties in this type of new required social/environmental adaptation. 

With that perspective taken, the discussion from the Wrong Planet website related to this issue linked below is in some ways a cautionary tale for the rest of society. Some people in that discussion may be among those singing the song of the "Canary in the Coal mine". 

In this event, not a noxious gas or vaccines are the offender. 

It is a way of life, at least in part, that people are attempting to escape that they are "virtually" trapped in, per "Catch 22", in what is becoming an effective life that is "Matrix", in nature, for some.

Continued Discussion and Informal Poll from the Wrong Planet website linked here:



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