But, creating autistic mice?  Really?  First, that which we call “autism” is a collection of observed behaviors.  Most observable human behaviors can have multiple causes.  Just because you can recreate a facsimile of those observed behaviors in mice doesn’t mean there’s any causal relationship between what you did to the mice and what happens in a normal, naturally-developing autistic human.  That seems pretty obvious to me.

So what is the scientific value of scanning the brains of these artificially created autistic mice?

I totally get testing out the scanning technology to make sure it works.  I also see the value of the scanning technology; I suspect it’s going to help researchers gain a better understanding of the working differences between so-called “normal” brains and autistic brains.  (Though, I disagree with these researchers starting with the assumption of pathology or wrongness.)

But what conclusions can we really draw from scanning the brains of mice which scientists have manipulated to demonstrate autistic-like behaviors?  Do these scientists really think they’re going to gain insight into naturally-occurring human autism by scanning the brains of these mice?

Am I missing something?  Really, if you understand this leap of logic, which to me seems like driving off a cliff versus jumping to a different level of reasoning, please share!

On another note, this seems a bit more promising:

This type of finding—an inherited difference that cannot be explained by variations in genes themselves—has become increasingly common, in part because scientists now know that genes are not the only authors of inheritance. There are ghostwriters, too.

…

It also adds another layer of significance to our daily lives. A number of environmental factors, from nutrients to temperature to chemicals, are capable of altering gene expression, and those factors that manage to penetrate germline chromatin and escape reprogramming could, in theory, be passed on to our children and possibly our grandchildren.

…

Given the elusive nature of inherited epigenetic modifications, it seems that, despite decades of investigation, scientists remain on the brink of understanding. The possibilities, however, seem endless, even with the constraint that, to be inherited, epigenetic modifications must affect gene expression in the germline, a feat that even genetic mutations rarely accomplish. But with the skyrocketing prevalence of conditions such as obesity, diabetes, and autism, which have no clear genetic etiology in the majority of cases, as Brunet pointed out, “It seems that all complex processes are affected by epigenetics.

While scientists continue to search for definitive evidence of transgenerational epigenetic inheritance in humans, the implications so far suggest that are our lifestyles and what we eat, drink, and breathe may directly affect the genetic health of our progeny.”

What can I say?  I like it when scientists discover that what they knew wasn’t all there was to be known.  This is the science that attracted me so much in my childhood:  Science as exploration and discovery, not science as a god or using science to “prove” politically- or ideologically-motivated beliefs.

The idea that nurture might affect nature as a ghostwriter appeals to me.  Our lives are not predetermined by the genetic makeup of our ancestors, but products of on-going choices that echo through generations.  And we just might have a scientific way to study a portion of that phenomenon.

I didn’t really expect a response from the magazine.  I certainly didn’t expect the response that I received from Stephen Roberts:

I stumbled upon this blog by chance and it pains me that this is the image you’ve gained of myself, my associations and my magazine, The Dark Fiction Spotlight.

I wish to tell you about the autism anthology that will never be. 

[You read the rest of the comment here.]

Well, to say the least, this required a retraction.  But I was curious.  I wanted to know more.  So, I contacted Stephen Roberts, and was granted an interview.

You stopped participating in the autism anthology you were working on with Autism Speaks.  Where did this project come about and what ultimately made you make the decision to pull out of the project?

Well, to be honest, I’m new to the politics and such of autism. All I knew was what I learned from my nephews as I watched them grow. I was tapped by a publishing company preparing to launch that was to be run by a good friend of mine and she said she wanted to do the occasional charity anthology, to which I immediately thought of autism and my nephews.

Once announced, I received a great deal of support from the literary community, but also an outcry as to whom I’d associated myself with and more so my nephews, as they were to be involved in the cover art.

I immediately hit the web and started looking up every forum on autism I could and I found out that autism speaks.org didn’t represent my views on autism to say the least.

You are still interested in pursuing a similar project.  What are you looking for in recipients to the funds you raise?

I would still love to do something to help out the families touched by autism, namely the education of children and even the continued education of adults. I have found that many people write off those with autism, whereas all they need is a bit of patience from us to show us how brilliant they are.

I’m open to collaborate with somebody that has the vision and perhaps even the connections to get the funds earned to the proper place.

I also feel like we need more sites that represent the community of those touched by autism and not just the same biochemical explanations. More communication, less misinformation.

You are helping your sister raise your nephews, who have diagnoses of autism.  How has that changed or shaped your views on autism? 

Frankly, I knew little to nothing about autism several years ago, but when my oldest nephew was diagnosed (he’s 8-years-old now, his brother is 6-years-old), I sort of understood it, but mostly just did what I had to do for them on a day to day basis. I know their autistic, but to me they’ve never been “special” or hindered by anything.

I guess we (my family) must be doing something right, as their schools consider them to be gifted and they grow both socially and academically in leaps and bounds. 

What do you consider the most important areas for research in autism?

Again, to me I believe it to be all about education. Isn’t it a magical idea that my nephews could be given a shot that would immediately “fix them”, giving them perfect speech and altered personalities?

I do not mean to insult anybody on their views, but I just personally feel that education is key to the benefit of an autistic child as to ensure a healthy and prosperous adulthood.

I’m always open to learn more about the study of autism and welcome all opinions and websites to learn from.

If you had the opportunity to interact autistic adults, what would you most like to learn from them?

 If I could ask anything, it would be what I can potentially look forward to in the growth of my nephews. I’d love to know their views on the political stances taken on autism and the politicians who seem to be asking everyone but them.

I know that autism doesn’t make you “slow” or anything to the like, but in fact simply one who views this world from a different perspective. That’s something special in itself and anybody should want to converse and learn from them.

I hold my nephews to the highest of standards as far as their futures go and I’d just love to be able to know the stories of others and what they’ve achieved as individuals. Much like how a high school student might want to know what to expect in college, I’d just love to see what’s next. 

What change do you consider most important in how we, as a society and a world, address the challenges presented by autism?

I think we all just need to listen more. For one, I think that the whole puzzle piece symbolism is absolutely insulting. I don’t know if this is the consensus of the community, but once I really thought about it I didn’t like it. It implies that they’re not human or just don’t fit with us as a society.

What I’ve seen with my nephew’s teachers is that patience is key; all students are different, but they will tell you what they need if you’re willing to listen. No assumptions, no exceptions. 

For my readers who also write speculative fiction, can you give any tips on how to break into The Dark Fiction Spotlight?  (Also, do you have any idea when submissions will open again?)

Well, I wouldn’t say it takes much more than a love for your craft and the darker side of fiction to fit in with us folk. We’re open to most concepts as long as it’s dark in nature and the only thing we do not like are those who don’t take writing seriously.

We as a group do not believe in writing to be a hobby anymore than it is a talent to be born with. All the best writers I know don’t sleep some nights as their so obsessed with their craft.  Unhealthy? Perhaps. Does it pay off at times? Yes.

But all in all, Daniel, Stacy, Thadd and I are pretty easy folks to work with, at least I think so.

Unfortunately The Dark Fiction Spotlight is on hiatus, but not in a negative sense. We’re developing a solid game plan to take our 4theluv/contest money e-zine and evolving it into a print/digital magazine at pro rates. This is something we take very seriously and do not wish to rush just yet. We’re also considering anthologies, contests and things to the like on the site until said launch, so please do keep in touch with us and or visit the site to see what’s going on.

The site:

www.thedarkfiction.com

TDFS submissions/query e-mail:

tdfspublication.subs@gmail.com

While I cannot apologize for my gut reaction, I sincerely apologize to Stephen Roberts, The Dark Fiction Spotlight, and my readers for not researching the proposed anthology more extensively.  I know I’ll be check in with The Dark Fiction Spotlight from time to time, and I hope you do as well.  And I hope Stephen Roberts gets to edit the anthology he was hoping for!

One such study relates to visual skills.

Children with autism may lack certain visual skills needed to be independent in adulthood, new study findings suggest.

For example, they might find it harder than other adults to find shoes in the bedroom or apples in the supermarket, according to researchers at the University of Bristol in the United Kingdom.

The study authors asked 20 children with autism and 20 typical children to press buttons to find a hidden target among multiple illuminated locations in a room. One side of the room had more targets than the other side.

The children with autism took longer to recognize patterns in the test structure that would help them choose where to search for the targets. The findings suggest that the ability to search for objects in a large-scale environment is less efficient and less systematic in children with autism compared to typical children, the researchers pointed out in a university news release.

Personally, I’m a little skeptical that the findings (concerning finding hidden targets in multiple illuminated locations) can be generalized to finding shoes or apples, or that the delays in these skills identified in autistic children necessitates a similar lacking in autistic adults.  However, it does strike a chord with me.

One responsibility that seems to be primarily mine in my household of men is keeping track of things and finding them once they go missing.  To me, it’s always seemed to be a skill of thoroughness.  You put things back into their place, and when they’re not there you look everywhere until you find it.  But, perhaps, there’s more to it than that.

Perhaps I am able to identify things in a manner that my husband and children cannot.  Whether it’s a perceptual ability or a skill, I don’t know.  I mean, if you literally cannot see what you’re looking for—and by see, I mean differentiate the object you’re looking for among the clutter—, then how can you find it?  But, perhaps it is a skill.  Perhaps it is one of those skills that neurotypical individuals (and some neurodiverse individuals like myself) pick up more or less naturally to the extent that they don’t know how to teach it to those who do not acquire the skill in a similar manner.

It’s worth some thought.  Perhaps if I spent less time being annoyed that I am expected to know where everything is even after they’ve moved them and more time helping them develop this skill of minding and finding that I take somewhat for granted, then perhaps we would all be better off. 

On the other hand, from what I’ve heard from other mothers (and not just mothers of autistic kids), this seems to be a common complaint among women.  Perhaps it’s a male/female thing.  I mean, if the study didn’t account for the imbalance between boys and girls with diagnoses of autism, but had a balance between boys and girls in their typical peer group, then perhaps the difference they recorded could be less about typical/autistic development and more about male/female development.

So, what do you think?  Is it a skill or an ability?  Is it related to autism or something else?

For those who don’t know, I am a professional writer—a professional writer at the beginning of my career, but a professional writer nonetheless.  I write full-time.  I make money.  I have been professionally published.  I’m writing two novels and a non-fiction book, along with many other shorter projects.  I market my skills to local businesses (and sometimes not-so-local businesses) and I get paid well for my work.

My point is that I have many interests.  One of the interests I’m resurrecting, after years of studying business, is my fiction.  I’ve neglected my fiction sorely over the last decade of child-bearing, autism-diagnosing, and degree-getting.  Now it’s time for that passion to be re-born.

While I make some effort to keep my variety of interests separate, there is some overlap.  The main character of one of my novels is rather Aspie-ish.  (Though, I’m not going to call her an Aspie—if, for no other reason, then because she’s a fairy.)  My other novel, which is being co-written by a friend of mine, has strong “outsider” themes.  My non-fiction book melds my interests in autism and business and confronts one point where those interests overlap.

Then, there are other, less pleasant, intersections.

I receive many newsletters for writers, including Writing World.  I scan the articles and choose which ones I’ll read in detail.  One I chose to read in detail was about dark fiction markets, written by C. M. Saunders.  This article recommended The Dark Fiction Spotlight as a token-paying market that publishes dark fiction.  So, I checked it out.  As I was scanning pages on the website I found a sub-tab called “Anthology for Autism.” 

Hmm, I thought.  Now, that could be cool!  I have an idea of for a short story that is both dark, science fiction and involving an autistic main character.  The story isn’t written; it’s one of many projects that has been postponed due to time-constraints.  But, I figured if there’s actually a market for it…

So, I started reading about this anthology, and it starts with:

About Autism Speaks:

Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Since then, Autism Speaks has grown into the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we’ve been able to accomplish and look forward to continued successes in the years ahead.

Oh, dear.  It didn’t look quite so promising any more.  But, I kept reading.  Maybe they’re open-minded.  But, then…

I repeat:

Anything that will offend Autism Speaks will offend me and will not be considered.

Honestly, my story would definitely offend Autism Speaks.  And, frankly, I wouldn’t have it any other way.  I remember trying to interview someone at Autism Speaks once.  It didn’t go well.  It wasn’t even an advocacy piece, but that didn’t matter.  Even a piece designed to inform parents of their information options offended the Autism Speaks representative I spoke with.  They were only willing to participate if they had full control over what I wrote, which is an ethical no-no in the journalism world.

So, I took a break from my bullying series to warn my fellow speculative fiction writers and autism advocates that The Dark Fiction Spotlight or Lady Luck Publishing might not be publishers you want to patronize or write for.  As much as I hate to write off potential markets, I won’t be pursuing any opportunities with them.

* * *

For those who read this blog and don’t already know, this last part provides reasons why such an affiliation with Autism Speaks requires me to boycott this company and it’s zines.

In a sense, all of this is about bullying. 

Autism Speaks claims they exist to advocate for families with autism, but only 4% of the donations goes to those families.  They fund research, and one of their major projects seeks a way to diagnose autism in utero, which is a form of eugenics.

That is why I disagree with Autism Speaks’ agenda.  But that, in and of itself, does not warrant boycotting (though it is why I would not donate to their organization).

Autism Speaks goes even further than this.  Autism Speaks is an organization that intentionally spreads fear and despair.  They use advertisements that amount to hate speech against autistics.  They encourage parents to fantasize on camera about killing their autistic children, and use this as a reason why autistics should be eliminated from society.

They use “Autism Speaks” as their name to claim that they speak for autistics; they don’t.  Autistics can and do speak for themselves, like these protesters.  On the site for the anthology, there’s this branding slogan: “Autism Speaks. It’s time to listen.”  Autistics, in return, says: “Autism Speaks needs to listen.”  Instead, Autism Speaks actively tries to silence those not in agreement with their eugenics agenda.

If this wasn’t bad enough, they engage in unethical business practices.  They mislead donors as they raise funds for their research.  They try to control media elements, as they did when I tried to interview one of their representatives.  And they bully their way through politics and the social landscape.  Their message is clear:  If you don’t feel bad (or even homicidal) about having an autistic child, then there’s something wrong with you, because autism has stolen your child’s soul.  (Yes, the soul-stealing is paraphrased, but with their very words one of their representatives has used.)

As an organization, Autism Speaks is a bully—a well-funded, politically powerful bully that believes that eugenics is the solution to autism.  And that offends me.  They use their size and their wealth to attempt to stomp out disagreement.

And they create anthologies where one point of view is all that can be expressed, because they don’t want their audience to become aware of differing points of view.

That offends me.  Autism Speaks offends me.  As a business person who believes in ethical business practices and as a parent of three children with diagnoses of autism, Autism Speaks offends me.  And I cannot write honestly and not offend them in turn.

I wouldn’t change that even if I could.

Autism treatments: Risky alternative therapies have little basis in science

Alternative therapies amount to uncontrolled experimentation on children, investigation finds

The article starts with a little boy whose parents are currently involved in a bitter custody battle.  One parent, the mother, is subjecting the boy to a “complex treatment regimen” that involves the child taking many pills, being injected with vitamin B12, receiving intravenous infusions of a drug used to leach mercury and other metals from the body, as well as taking megadoses of vitamin C, a hormone and a drug that suppresses testosterone.  The father opposes these treatments.

Unfortunately, this little boy is not alone.

But after reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, the Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.

The therapies often go beyond harmless New Age folly, the investigation found. Many are unproven and risky, based on scientific research that is flawed, preliminary or misconstrued. (Tsouderos & Callahan)

And here’s where the kudos comes in.  Sure, as a parent of three children on the spectrum, I’ve heard about all of this.  I know these therapies are opportunistic bunk.  Yet, I still read articles in otherwise respectable periodicals promoting all this bunk.  And here is the Chicago Tribune devoting precious reporting time and significant space in their newspaper to debunking the bunk.  To say I’m impressed is, well, an understatement.  They just might get a subscription out of this!

Also noteworthy:  This article links to these FAQs which states, among other things, that while researchers at John Hopkins have noted neuroinflammation in their studies of autistic brains that this should not be used as a reason for treating people with autism with anti-inflammatory medications, which the researchers fear might happen.

Read this to find out more:

Autism treatment: Science hijacked to support alternative therapies

Researchers' fears about misuse of their work come true

So, I’m pleased with the reporting going on at The Chicago Tribune at the moment, which I find particularly pleasing because this newspaper seems to have close ties to the graduate school I intend to attend.

While I certainly recognize why this distinction would be appropriate from a research stand-point, I propose an equally important distinction would be to consider parental response.  After all, behavioral patterns of the children are not within the parent’s control, but the behavioral response of the mother is within her own control.  The news brief concluded with this statement from researcher, Leann Smith: “We need to find more ways to be supportive of these families.”  I do not disagree, but perhaps there is something more immediate that parents themselves can do for their own health and well-being.

See I have a hypothesis: mothers who accept autism will have more healthy stress levels and less stress-related health risks than mothers who are constantly fighting against autism.

The key thing for me is this:  “Cortisol levels were found to be significantly lower than normal, a condition that occurs under chronic stress, yielding profiles similar to those of combat soldiers and others who experience constant psychological stress,” (emphasis added).  Considering that many mothers who are traumatized by their child’s autism use language similar to that used in warfare – like “fighting” and “battle” – is it really surprising that they would have profiles similar to combat soldiers?  They are combat soldiers—they are waging a war against autism.  Think of the “I Am Autism” video.  That video used the language of war, not unlike the language used when describing terrorism that happens in one’s home country.

As parents, we can choose to bring stress upon ourselves by waging a war against autism, embracing the psychological risk-factors of a soldier’s lifestyle in the process.  Or, we can choose to be parents, not soldiers, and simply raise our children.  Personally, I believe the latter is the better choice, for our own sake and for the sake of our children.  I hope they continue this line of research and add other factors to see how parental responses to autism affect the outcomes for those parents.

Now, research also coming out of the UK sheds further light on this very important issue.  I read this article posted in Medical News Today:

This ground-breaking study shows for the first time an estimate of how many adults are living with autism spectrum disorders (ASDs) in England. The study into the prevalence of autism spectrum disorders among adults shows that one in every hundred adults living in households has the condition - broadly the same rate as that cited for children.

The implications of this research are, in my opinion, nothing short of profound in their implications of the politics of autism.  Further relevance is revealed in these findings:

While 1.0 per cent of the adult population had an autism spectrum disorder, the rate for men was higher (1.8 per cent) than for women (0.2 per cent). This was in line with studies among child populations which show higher rates amongst boys.

People who were single were more likely to be assessed with an autism spectrum disorder than other marital statuses.

Among men, prevalence of an autism spectrum disorder was lower among those with a degree level qualification than among those with no qualifications.

Men renting their home from a social landlord were more likely than those living in other types of housing to have an autism spectrum disorder.

Adults with an autism spectrum disorder were no more likely to be using services for those with mental or emotional problems than the rest of the adult general population.

If I ever doubted we needed to take a serious look at how we, both in the US and internationally, approach autism this offers a never-before-seen glimpse that shows very clearly that we do.  Misinformation and assumptions having us looking for causes and solutions to this false “epidemic,” when what we really should be doing (and should have been doing all along) is using our resources to find ways to solve problems people with autism face every day.

Elesia of Aspitude! is a woman with Asperger’s who is also a Research Assistant for Academic Autistic Spectrum Partnership In Research and Education (AASPIRE).  She recently wrote a post called The Fingerprint of Autism that reminds people that each person on the autistic spectrum is a unique individual.  As obvious as that seems to me, it really is worth saying, because there are people who just don’t get it.

Besides, there’s a really cool picture of a blue butterfly!  What can I say, I appreciate pretty things. :-)

The RUN FOR AUTISM – Chicago is OAR’s largest fundraising event of the year.  This year, The Bank of America Chicago Marathon launched a fun and interactive opportunity that allows you to leave your “digital mark” on the Windy City in anticipation of the marathon on October 11^th.

We invite you, your friends and family to log-on to www.chicagomarathon.com/footprint and create a free personalized digital footprint, which includes a shoe tread, personal photo, quote, and your support for OAR. Just select “Run for Autism - Organization for Autism Research” from the charity dropdown menu and create your footprint. Be sure to save the jpeg image so you can share your footprint others, inviting them to log-on to create their own footprint and show their support OAR.

The first 50,000 people to create their footprint will earn $1 donation to charity of their choice, including OAR. You don’t have to be a RUN FOR AUTISM participant to make your mark on Chicago this fall; create your footprint today and spread the word.

Now, I’m not planning on joining the run for autism.  I’ve been to Chicago – twice.  I’ll go again, but spending $30 + (not including gas, food, or other expenses) to participate in an event just isn’t in our budget.  Especially when I’m not 100% on-board with the organization.  However, leaving a footprint sounded worthwhile.

It’s a little hokey, but it gives you the opportunity to choose from a variety of charities (including OAR, but not them exclusively) for a bank to donate money to, which seems like a good cause just about any way I look at it.  If you’re going to do this, you have to design your footprint by October 9^th!

“The two-year project will measure the effect of telemedicine support on parents’ ability to provide PRT to improve functional verbal communication in their children with ASD.”  It compares parent treatment with and without telemedicine support after the same initial training program.  If telemedicine support proves effective it may provide a cost-effective means of helping families provide effective learning environments for their autistic children that facilitate the development of readily recognized social communication skills.  In many areas, cost and shortage of services result in long waiting lists and limited service options, therefore if this procedure proves effective it will increase access to timely treatment options.

As a side note:  “PRT is an evidence-based model that uses both a developmental approach and the science of applied behavior analysis (ABA) procedures to target areas that underlie the core symptoms of autism, including impairments in social interaction, communications, and repetitive/ restrictive behaviors.”  The value of the “evidence-based model” may seem questionable after reading Michelle’s post.  However, OAR states:  “Among the myriad interventions that claim some degree of effectiveness with individuals with autism, interventions based upon the principles of applied behavior analysis (ABA) have the most comprehensive and sophisticated research base by far.”  That, admittedly, offers little reassurance in the face Michelle’s report.