Lines: Drawing Them, Stepping Over Them, Obliterating Them

Community is important; all too often in our lives as special needs parents, we can and are isolated. We are left to our own devices; we are given inadequate guidance, advice, or information regarding our children and their issues. We don't know where to turn and we don't know who to turn to.

Back when our journey began with our son, there was barely an internet; there was hardly any chatter on autism. I've written about those times: the bad books, the bad shrinks, the bad times, all around. It wasn't easy. There were years of fractured days and splintered nights, times I felt like I was barely holding on, and that no one really understood. And there was no help, no break, little hope. It was not good.

So I get it. I do. I have the utmost compassion and empathy for those new parents struggling with this bewildering diagnosis, their child's staggering needs, the confusion, the isolation, the sheer exhaustion. I get the fear. I get the despair. I can close my eyes and be 22 again, with an infant son who screamed unless he was nursing, to be 25 again and have a preschooler who was nonverbal, still in diapers, and preferably naked. I can close my eyes and be 30 and holding my nine year old son in his hospital bed, after his stroke, his right side paralyzed, his speech gone. I remember those months after the stroke when he had to learn it all over again, when we were once again cleaning his bowel movements off the floor and wherever else he cared to go.  I get it.

I get it. I do. It can be incredibly draining to parent children with autism and other neurological disorders. We're ill-equipped to think of ourselves as caregivers past a certain point in our children's lives, and we are often left with no community support, with no respite care, with no one but ourselves to work with our children. And when we have multiple children, the demands increase, especially when each child has an neurological condition. It's daunting, overwhelming, and it can feel like there will never be a light at the end of the tunnel.

And we need to vent. We need a safe place to let it out, our pain, our fear, our frustration, our exhaustion. We need desperately to know we are not alone.

I really do get it. And I get when you are at the bottom of the pit, it's impossible to think there's any other place but the pit. You think it will never get better. You can't remember a time different, and it's impossible for you to imagine how it will ever improve.

And as long as you are in that pit, isolated, alone, and certain in your convictions that it won't get better, it won't.

You may not have put yourself in that pit, but you're there now. And the only person who's going to get you out is you. YOU. Friends can be lined up along the pit, holding their hands down to you, throwing you lifeline after lifeline, but if you don't reach up and grab, you will stay in the pit.

We each of us draw lines, boundaries, that we believe we will not cross until we've crossed them. We may not realize until it's way too late that we've smashed these lines we've drawn, obliterated them out of existence.

We can and should be there for each other, support each other, and we should be able to express when we are in despair, when we are broken, when we need some help.

We must learn to ask for help when we need it, and we need, even as we are mired in that pit, that wasteland that we think goes on forever, to realize that our actions in that pit will follow us out and into the world and into our children's lives.

Our pain does not give us license to hurt or abuse our children. It does not give us license to degrade them or dehumanize them.  These are not lines we can cross.

Our children depend on us, need us, demand the better angels of our nature. We are not perfect and we will fail them, but we can not for their sakes or our own afford to fail them when it comes to respecting their innate value and dignity.

I don't know what the answer is, how to respond, what to say, when I've seen that line obliterated. It gives me tremendous pause. But let me suggest this: if all you see is pain and the pit when you see your child, you've walked up to that line and started stepping across it. It's time you reached out and got some help.

An After-Christmas Smorgasbord: Rhetorical Questions, Political Correctness & Tone Deafness: Rejecting the Angry Places

Twitter, facebook, various blog directories, Yahoo and Google news alerts are all familiar ways to most readers to get caught up with the world, and specifically for us, the autism-related world. This morning I read Susan Senators' serious post about the way the world views her two oldest sons and Autism and Oughtism's piece on when it's okay to laugh and when it's not. These are heavy pieces and speak to our human frailties, tendencies to inaction or covert action. They both speak to the pain we can feel as parents and to our darker moments. They're not light reading, but they're thought-provoking and worth the effort. It was not a bad way to start the morning, just a serious way to start it.

What came next in my things to read  this morning came through Wrong Planet's twitter feed: "Asperger vs NT war.: Who would win?Why? Assume that the Neurotypicals and ASD in the war are both equal in terms...http://bit.ly/gjOzT9." There are a few answers to the thread, most saying NTs would, and one saying whoever had the most money. And all I could think is what the heck kind of question is that to ask the morning after Christmas, any day for that matter?

What is with this way of framing the world two dimensionally that we all do it? The haves and the have-nots, the in-group and the out-group, the disabled and the non-disabled. It's not that cut and dried. It's not that black and white. And as long as we focus on false dichotomies, it's going to be incredibly difficult to build a truly supportive, inclusive community.

The personality traits (when we remove aspects of crippling disability that are involved on the severe end of autism) that are involved in autism are spread throughout all of humanity; there is no clear dividing line between a fictional neurotypicality and Asperger's, and neither state of being is superior or more worthy. I look at my children and see my husband, my parents, my brothers, and myself reflected back from them. I see shared personality traits and quirks and issues that make us the complex, interesting people that we are. I see the adversities that my children work to overcome, some of which I've had to overcome as well. The idea, the very notion, of positing a war with Asperger's and NTs is absurdity. 

I get that my kids are literal thinkers; so many who are not on the spectrum are literal thinkers as well. That isn't something the ASD has the corner on. I get that many on the spectrum have difficulty with theory of mind. So do a whole lot of folks who are not on the spectrum; drive through a school parking lot and you'll see lots of evidence that most folks aren't using their theory of mind. There is a tremendous overlap of traits, attitudes, and behaviors between all people, so that we have more in common that not. We must focus on these areas of commonality in order to build community. We must see the humanity in others and recognize that it is the same humanity within ourselves.

We must be willing to join our friends in their darker, sadder ponderings, as I did with Susan and Autism & Oughtisms this morning, so that we can be a support, so that we can bear witness, even when we're not quite certain what to say in response, so that we are none of us alone on this journey. 

But I think we have to reject the kind of rhetoric displayed, even if in jest, on Wrong Planet this morning. I think it's easy, terribly easy to set ourselves up as one side in a battle against an implacable enemy, and I have no doubt that many in this community do indeed set themselves up in this way: bitter enemies on a battlefield, each certain of their mental superiority and the righteousness of their cause. 

I read them hammer down the other, time after time, day after day. There's no exchange of ideas, no transmission of information, just an incessant, pointless hammering, with people thinking it perfectly acceptable to call pediatricians "Propaganda Prostitute for the Vaccine makers" and another to cast me as her "old foe, KWombles, hi Kim, speaking out in deception on the side of toxic vaccines...Good thing people aren’t duped by you here working to do so as most are awake now a days & those in the dark or on the fence are soon to meet reason & logic once they start paying attention." The one thing I can say absolutely is that I've never considered this particular individual a foe.

Reading blogs and forums in our community can be landmines waiting to be set off, setting us up to take a tailspin if something connects too painfully, or if we read something so utterly off the deep end that we wonder at both the moral compass and sanity of some of the people we come across. And I wonder, when I read those so far entrenched, what must the weight of their burdens be to be so utterly lost and devoid of hope, of light, of reason? I do not consider them my enemy, my foe, or an outsider; I am not naive enough to think we can change those people, reason them out of positions they didn't reason themselves into in the first place, but keeping a check on them is a good thing to do. There is an underbelly to this community and at any moment, it can reach out and try to tear us down into it.

But it is an underbelly, not the whole beast, not the entire story, and there is so much love, so much light, and so much beauty in the midst of pain and heartache that the journey of being part of this community is well worth the price of admission. Heather writes about embracing Christmas, this first one without her daughter, and I am overwhelmed by her grace. Eric writes about his son and celebrating Christmas and the issues they face with his son's seizures, and I am honored to watch this father battle for his son's life and well-being. Born 2b Me wishes his readers a merry Christmas, as do many of the bloggers on the directory, and there is joy and peace and love on most blogs this holiday weekend. Corina offers a lovely drawing at her blog, and Clay shares some coca-cola videos at his blog. Matt has a cartoon on Rudolph that will make you smile. 

And so this morning, I end my reading on an upnote, amazed at the grace, the fortitude, the joy, and the compassion that is out there in our community, just waiting to be found and shared. I have seen into the dusty corners where our fears lay, I've seen into the closet where the monsters lie in wait, and I have pulled the shades to the sides of the windows and let the sun in. All these things are a part of our world, our community. And we must face them all, ideally together, so that we are none of us alone and without hope.

Autism and Genetics: Emily Willingham

 More videos by Emily Willingham at http://www.youtube.com/user/biogrrl68.

Additional relevant pieces:

You, as Gestalt

Real science: Copy number variation and autism

And today she's over at TGPA:  Recent Autism Studies in the News: Overpromising, Big Time.

Guest Post by The Epi Times: Oh, Baby! or Intro to Mendelian Genetics

I read a comment this morning on a blog that had me cringing at the lack of understanding of genetics. As parents, we need to work to be better informed in the basics of science, and we need to guard against the assumption that we understand something (this comment was offered with complete confidence but was woefully off the mark).

Reposted by permission. Please see the original at The Epi Times. Thank you for writing this! :-)

...

True story (maybe): I was working as a medical technologist, a lab boy, in a rather large hospital near the nation's capital. That night, I was working in the blood bank section, doing routine blood types and setting up blood for patients going to surgery the next day. I loved that job because, about every hour or so, I'd have to literally run to the emergency department to deliver O-negative blood for someone who had just been shot, stabbed, or been in a bad car accident. That allowed me to take in some of the adrenaline that late-night weekends brought with them. Oh, the stories I can tell you. Yet the one story that has stuck with me all that time is the interesting case of a child whose blood type made no sense when compared to the parents' blood types. It took five hours, lots of research, and one phone call to clear up the mystery. More on that case and an intro to Mendelian Genetics, as always, after the jump...

Their genes are varied, unique, but never "defective" or "faulty"

BLUE EYES OR BROWN?
My wife was surprised to know that people in my extended family had blue or green eyes. She was even more surprised to know that there are plenty of Mexicans with blue eyes. Now, my wife is in no way someone that would stereotype on purpose, but it is a reasonable assumption that people from one country or region of the world outside the United States tend to be homogeneous (of one consistency) in skin, hair, and eye color. After all, you don't see a lot of short, black-skinned Germans, do you?

Uh... Well... Uh... Move on, nothing to see here...

There is a simple explanation as to why some of my cousins have blue eyes while I don't: GENETICS. Very simple genetics (so simple that they are taught in elementary schools nowadays) are often called Mendelian Genetics, named after Gregor Mendel. Mendel explained in the 1860s that seeds (peas) seemed to inherit their traits (color and texture) in a patter that could be statistically predicted. Of course, more and more people worked on this as the years went by, and we came to the understanding that there are two types of genes (alleles) that rule over inheritance patterns.

DOMINANT GENES
Dominant genes are those genes that code for something (eye color, skin color, height) regardless of their inheritance pattern. That is, they always "express" themselves. Brown eyes are coded for by a dominant gene. So it doesn't matter what my wife brings to the table (genetically speaking) with her beautiful hazel eyes. Our children have a very good chance of being brown eyed. Then again, there is a slight chance that they inherit blue eyes. Why? Because I might carry a recessive gene for blue eyes. (I haven't tested myself, nor do I need to.)

RECESSIVE GENES
Recessive genes, on the other hand, code for something but are susceptible to being "covered" by dominant genes. So I might have a recessive blue eyes gene which is being covered by my brown eyes. My wife, on the other hand, has both recessive genes (one from each parent) for blue, hence the color of her eyes. There is a 1 in 2 chance that I'll pass on the recessive gene, while her chances of passing it on are even at 1:1 (since she has no dominant brown eyes gene or she'd have brown eyes, too). Our overall chance of having a brown-eyed baby (a latte baby, if you will) is 1 in 2 (because 0.5 chance of blue eyes multiplied by 1.0 chance of blue eyes is 0.5, or a 50% chance). If she had brown eyes too, then the chance of a brown-eyed baby would be 75% (1 in 3) because 0.5 multiplied by 0.5 is 0.25, or a 25% chance of a blue-eyed baby.

All we are saying is "give peas a chance"!

So, just like I can have a blue-eyed baby, my uncles and aunts had blue-eyed babies, my cousins. Those cousins can marry a brown-eyed person and have brown-eyed babies who, in turn, can later have blue-eyed babies, "skipping a generation." See? It's not that complicated, is it?

COMPLICATED ENOUGH?
As you can see in the graphic above, yellow and green peas can "give birth" to white peas. Look closer, and you can see that their texture is different as well. Mendelian genetics is not a very hard concept is you just keep looking at what is dominant and what is recessive. In the graphic, green color (R) and a rough texture (Y) are dominant. So any combination of genes from both "parents" that have an R will be green, and Y will make them yellow. Lowercase "r" will mean yellow, and lowercase "y" will mean smooth IF AND ONLY IF there are no dominant genes to cover them.

REAL LIFE
In reality, there are a wide variety of genetic conditions that afflict many. They are rare, yes, but they are still important to look at. One condition that behaves very "Mendelian" is cystic fibrosis (CF). Cystic fibrosis is a condition where the lungs produce excess mucus, and they are not good at getting rid of that excess mucus. Folks with CF suffer from all sorts of lung infections because viruses and bacteria that get in there are difficult to clear out. The pancreas of a person with CF also produces a thick mucus that prevents the proper processing of food. As it turns out, a person with CF inherits two recessive genes for CF that cause the overproduction of that mucus. Someone who has only one recessive gene from one parent is okay (though they still have some slight problems). Those folks with the recessive genes grow up, get married, and the gene moves on down the lineage. Now, if two people meet and have a child, and they both have the recessive gene, then, like with blue eyes, there is a 25% chance that their child will have CF.

Other conditions that behave the same way are sickle cell disease and Tay Sachs disease. Together, they are called "Autosomal Recessive Disorders".

WHERE IT GETS CONFUSING
It is confusing and very frustrating to parents of children with autosomal recessive disorders that they gave birth to children with the disorder without any prior warning because they were healthy. If they were healthy, why would their children have such horrible conditions? Why didn't the gene "die out"? Well, it didn't die out because it's recessive, meaning that you need to be "unlucky" enough to have two people with one gene each get together in order to have a child with the disorder. Even then, it's only a 25% chance that the child will be full-on sick. There's a 25% chance that the child will have none of the recessive genes and only the dominant ones (in which case the genes do end there). But 25% and 25% do not make 100%. There is the remaining 50% chance that the child will also be a carrier of the gene, like the parents... And the gene lives on.

A 50-50 CHANCE
Of course, there are those conditions that are caused by dominant genes. In those cases, the affected people usually make it to adulthood. If they were to procreate with someone else who did not have the dominant gene, they would have a 50-50 shot of having an affected baby. The bright side there is the 50-50 chance of an unaffected baby. Huntington disease is such a dominant genetic disorder.

A very dangerous 50-50 shot...

GENES DON'T DIE, THEY JUST FADE AWAY
So you can see from these examples that genetic conditions can't really be "washed away" from the population even if everyone was to be properly screened. The Nazis wanted to try this, and they failed miserably not only because of their misunderstanding of genetic conditions but because they were dealing with humans. No one is allowed to tell us who to love and when and how. No one is allowed to tell us whether or not to have children. Choice, it seems, is helping genetic conditions move on down our lineages. And that's not such a bad thing.

It's not a bad thing because genetic variations, even if they cause disease, allow for us to be varied and strong as a species. One of the first steps in evolution is mutation, so it's not all that bad that we have some folks with different genes. It may be a very difficult existence to live with a genetic condition, but it's just one of those things that make us human. It's not easy, but it is needed. I know, I know... Easier written than done. However, there is very real evidence that folks with sickle cell disease do not get infected with malaria since the malaria parasite cannot infect and reproduce in the sickle-like red blood cells of those folks. Even CF isbelieved to be a genetic adjustment to diarrhea-causing diseases like cholera.

Other genetic mutations just make you dress ridiculously

Of course, there are other ways in which genes can cause disorders to be passed down from one generation to the next, but I promised to keep this post simple and short(-ish).

THE BABY WITH THE WRONG BLOOD TYPE
Alright, so, where was I? Oh, yes... So I received cord blood for a blood type on a baby that was born late one night. The baby's blood type was O-negative. I'll spare you the genetics class and tell you that O-negative babies can only be born from a pair of "negative" parents. Type O can be inherited from parents who are both A, both B, one A one B, one A one O, one B one O, or both O. If one parent is AB, then the baby MUST be A or B, never O. Trust me on this one.

Guess what blood type the father was? That's right... AB-positive. The mother was O-negative. I had to do the blood type because the mother was a candidate for "rhogam", an infusion of antibodies designed to get prevent her from making antibodies against the Rh factor (positive/negative) of the baby if the baby is positive since the father was positive. So, to recap... Baby is O-negative. Mother is O-negative. But father is AB-positive. That is, the father had all three dominant genes (A, B, and Rh). The baby could only be A-positive/negative or B-positive/negative, nothing else!!!

OH, SNAP!
I didn't know about the father until the obstetrician called me after I released the results of the baby's blood type. "Lab boy," she said, "I need you to retest the baby's blood."
"Why?" I asked.
"Because the father is AB-positive." If you could only see the expression in my face. The father had recently returned from overseas. He was in the military, and he had his blood type on his dogtags. Not only that, but he had been severely injured a few months back, so he knew for sure he had the right blood type on his tags. It was going to be a long night.

RESEARCH, RESEARCH, RESEARCH!
I spent the latter part of the night researching into whether or not the baby could be that blood type, given what we knew. I called the American Red Cross and spoke to some very experienced blood bankers. We all agreed that the Mendelian Genetics did not agree. There were only so many blood types the child could be. I read through several books on genetics and on blood inheritance. It appeared to me that a divorce was likely to happen. The obstetrician asked me to test and retest the blood. She even sent the father down to the blood bank to be tested. She then drew a sample from the mother for testing. It was all still the same, until...

BONUS POINTS
If you can tell me what really happened without reading any further down, you get bonus points and maybe even some "mad props".

You're not my Dad... maybe!

ELEMENTARY, DR. WATSON
Well, her name was not Watson, but what happened was quite elementary. I happened to notice that another cord blood was put in the sample case at around the same time as the child in question. Heck, I only noticed this because I had to re-test the cord blood so many times. So I took out that other sample and tested it. It was B-positive. This made me curious, so I called the obstetrician and asked if I could go up and draw blood from the child, based on my findings. She agreed, and I did. Indeed, the child's blood was B-positive. I called back and asked to speak to the nurse who collected the blood samples. She tearfully told me that she honestly did not know which sample was which since she had not labeled them at the bedside. Instead, she had waited until she got back to the nurses' station, with both samples in her pocket, and then decided to label them there. She was out of a job by the end of the night, from what I heard.

I hear she's doing well, though.

ONE LAST POINT AND A FINAL MESSAGE
As I stated above, there are other genetic conditions/disorders that cause trouble and are inherited in different way that plain Mendelian patterns. They are many times unpredictable... and almost always heartbreaking. They are heartbreaking because you see a pair of parents and extended family who blame themselves for their child's condition. If something was wrong with my genes, I would also feel imperfect and thus guilty for my child's disease. Even now, in 2010, there are plenty of conditions which we are discovering to have a heavy genetic component to them.

In some cases, genes are necessary but not sufficient to cause a disorder. This may be the case with some conditions like autism or allergies. The other factor is somewhere in the environment. When the environmental factor works upon the defective gene, the disorder is manifested. ("Defective" is too strong a word. A gene is a gene is a gene, and we are no where near understanding the "why" these genes have come along in our evolution.) If you or someone you know is concerned about a genetic condition or about passing on a genetic condition to your children, please talk to a genetic counselor and your health care provider... And don't think for a minute that your genes somehow determine your worth. Like with everything else, it's what you do with those genes to the benefit of others that will be the true measure of who you are and how you will be remembered... how your legacy will live on.

Jen's Blog Gems!

Our first post isn't much, just a request for help categorizing bloggers. Most of our blogs here are just snippets. But sometimes, we go on for a bit. This is the first one where we really discuss on the directory our purpose.

Seeds of Hope Holiday Gift Card Link

We're sharing the following at the request of the ELIJA School. 

The ELIJA School for Autism is an incredible institution that focuses on treating some of the gravest cases of Autism in children.  Due to the recent state budget cuts, the ELIJA School is searching for new ways to receive financial support for their programs and this holiday season they have created a unique holiday card that makes for an influential and uplifting gift.  With the Seeds of Hope Holiday Gift Card, supporters can make a donation to the ELIJA School in the names of their friends or colleagues, who will then receive a beautiful card ornamented by the ELIJA tree made out of removable seed paper.  This is a great last-minute gift that will truly make a difference as people join together to plant the seeds of hope.

Seeds of Hope Holiday Gift Card Link: https://elijaorg.ipower.com/contribute/donate-now/holiday-gift.php?

Presents under the tree...

 

  It is the holiday season for many of us..A time of mad rushes..shopping, cooking..celebrating. A time of highs and lows..of joys and stresses..it is a busy time. I also think of it as a time of giving thanks-of taking a moment and looking at all that I have... a wonderful family, remarkable friends, I am part of a community...I have such joy and I am blessed.  Our directory has steadily grown-our community flourishes.

  Both Kim and myself want to take a moment to thank you.  When we started this directory, the most important aspect to us was community building. We wanted a place where everyone, regardless of their opinion had a place to be heard..a place to be listened to. A place to share ideas, stories, struggles and triumphs. Where we could all learn from each other-free of charge.

  To me, finding a new blog is like opening a present on Christmas morning. It is a new story, a new perspective..new ideas-and how wonderful is that?  Sometimes you come a cross a post that really hits home.
Something that makes you think, or laugh-or just nod your head in total understanding.  There have been many of them for me this year.  Too many to list.  Yesterday, I was discussing this with Jen (a wonderful blogger), and she suggested we list some of our favorite posts/blogs of the year. What a fabulous idea.  So, I am going to extend that invitation to everyone in our community. What are some of the best posts you have read or written?  What has inspired you, or made you laugh, cry..or think?  What posts made a difference?

  I want to start a yearly tradition here.  Pretend this post is a tree and your comments are the presents. Let us know which blogger made a difference to you-what posts stood out?  I'll take all of your comments and put them in an end of the year package for all of us to share.

  Until then, both Kim and myself wish you all the most wonderful stress free holiday season.  Peace and joy to everyone...
Kathleen

  

Autism Science Foundation and A Recipe For Hope

Last week, Kathleen and I were delighted to post a guest post by Alison Singer for Recipe4Hope at the Autism Blogs Directory.

This week, I'd like to share here my recipe for hope and encourage readers to be moved to action. Kathleen and I have written over the last year about acceptance, appreciation, and accommodation. At Squid's prompting, we added action to that list of As.

Earlier this year, I wrote in response to Autism Awareness month: "On this day, this week, this month, and every other day, we should seek to help, to reach out in compassion, to those who are still new to this journey, to gently remind them that this isn't about them, the parents. Autism awareness is about the individual on the spectrum, about seeing them, their value, their worth, and appreciating them as they are: human in all its glorious diversity."

Awareness is important, but it's not enough. In psychology, I teach students that there are a series of steps we must all go through in order to get to the action. It is not enough to be aware of a situation (although that is the necessary first step). We must believe that it is something that requires action, then we must decide that it is our responsibility to act, choose how we'll act, and finally, carry out that action. At any point along this decision chain, we can abort and do nothing, even if we feel action is needed, even if we think we should act, even if we know what we should do.

Action comes after awareness. Acceptance, appreciation, and accommodations are all actions; they are all conscious decisions that require behavior to be implemented. If I accept you, my behavior will demonstrate that. I will include you in my in-group; I will converse with you, and I will treat you with respect and appreciation. In order to appreciate you, I must first accept you. If I accept you, if I appreciate you, then I will make whatever accommodations are necessary for you to function successfully.

Action is not, unfortunately, an inevitable consequence of awareness. You have to decide that action is needed, and that it is your job to commit to an action.

There are a lot of charities asking for money, a lot of individuals, as well, out there, asking for assistance. Far too often, we see people in need, and we do not act. In a zero sum world, there will always be losers. I think many of us may feel impotent or incapable of helping. Too many people asking, too many people needing, and we can be overwhelmed at the decision of who to help and how much to help.

I don't have any easy answers, but I believe that when we find a charity or a foundation whose principles or outreach we agree with, we should help to the degree we are capable. We should carry out our convictions and act. I'm not tooting my own horn, and I'm not suggesting that my contribution to the ASF is vast, but it is what I could give. While most of my charitable contributions I keep to myself, I think that writing about and promoting a charity, asking others to act, is more likely to prompt that action when we can show that we have the courage of our convictions, that we mean what we say, that we do what we can do. That's why my name  is on the Chefs page at Recipe4Hope. I wanted readers to know I believed in the ASF enough to act.

That act, that simple charitable contribution, is a recipe for hope. In the act of giving, we receive much more than we let go of. I don't believe in a creator, but I do believe in man's fundamental character: most of us care about others, most of us want to make the world a better place.

Sometimes, that involves our wallet. Sometimes, it involves our words. And sometimes, it requires a little more overt action on our part. Whatever you decide, I hope you will act to make the world a better place. Maybe it's not the ASF's mission that speaks to you. Maybe it's the local food bank. Maybe it's the Salvation Army. Maybe it's Toys for Tots. Maybe it's to provide respite care for a family in need. Whatever it is, I hope that you will feel joy in the act of giving and help to prove that this is not a zero sum world.

The Directory Goes to Twitter!

Our twitter handle is @KandKofABD. Please follow and share it; we'll follow back. We're really hoping to add more blogs to the directory, so if we're missing blogs, please send the links via twitter or comment here, or leave it at our facebook page. 

Guest Post by Alison Singer: Won't you be an ingredient in our Recipe4Hope?

Won't you be an ingredient in our Recipe4Hope?

By Alison Singer, President of the Autism Science Foundation

2010 has been an incredible year for autism research. There were many new discoveries and so much for our community to celebrate. I’m especially excited to see that the genetics studies we’ve been funding are starting to yield valuable information about autism’s biological roots. While we have learned a lot, there is much more for us to uncover about what causes autism and which treatments are the most effective.

Scientific discoveries are only possible with the right blend of ingredients. We need smart scientists, with great ideas, asking the right questions, and the resources necessary to carry out their work. 

The “right ingredients” metaphor reminded me of baking holiday cookies with my kids. My daughter, Jodie, has a tendency to want to pour lots of flour into the bowl (and to watch it fly around the kitchen).  While that’s certainly fun, it doesn’t make for a yummy cookie.  She is getting better at measuring and mixing, but she still has a way to go.

In fact, this is true of the autism community overall. We have made good progress, but there’s still so much we need to do.  At the Autism Science Foundation, we are committed to funding and supporting the most promising scientific leads.  Although we are under two years old, we have already funded our first round of grants and have been endorsed by the American Academy of Pediatrics, the Centers for Disease Control and the National Institutes of Health. Leading scientists from around the country are serving on our Scientific Advisory Board. And our websites, YouTube pages and social media efforts are helping bring new research information directly to families so that science can be put into practice to help real people.

It is in this spirit of science and hope that the Autism Science Foundation created the Recipe4Hope campaign. This special year-end giving campaign is raising critically needed funds for autism research. This holiday season, won't you join us in giving the gift of outstanding research to children, teens and adults with autism?

The centerpiece of the Recipe4Hope campaign is a heartwarming video that showcases a mother and child baking holiday cookies, mirroring the message that sound scientific research takes the right ingredients used the right way to create the right results.  Maybe we don’t need sugar and spice for autism research, but we do need insight, creativity, tenacity, hope and funding. That’s why every dollar donated through Recipe4Hope will go directly to autism research.

We welcome your financial support and encourage you to share why you believe autism research is important with your own social network. By lending your voice to this cause, we can do amazing things for people with autism.

There are several social media tools you can use to help spread hope through the Recipe4Hope campaign for autism research this holiday season. Read about all the fun ways you can get involved, including sending us photos of your family baking cookies to be shared on Facebook and Twitter.

This holiday season, outstanding research is the greatest gift we can give our families.  I hope you will give that gift  through the Autism Science Foundation.