Archive | August, 2011

Autism Study of The Month: Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study

the_warner_siblings

Recurrence Risk for Autism Spectrum Disorders: A Baby Siblings Research Consortium Study

Source: http://psy2.ucsd.edu/~kdobkins/O,2011.pdf

Abstract

Objective: The recurrence risk of autism spectrum disorders (ASD) is estimated between 3 and 10%, but previous research was limited by small sample sizes and biases related to ascertainment, reporting, and stoppage factors. This study used prospective methods to obtain an updated estimate of sibling recurrence risk for ASD.
Methods: A prospective longitudinal study of infants at risk for ASD was conducted by a multi-site international network, the Baby Siblings Research Consortium. Infants (n=664) with an older biological sibling with ASD were followed from early in life to 36 months, when they were classified as ASD or Non-ASD. An ASD classification required surpassing the cutoff of the Autism Diagnostic Observation Schedule and receiving a clinical diagnosis from an expert clinician.
Results: 18.7% of infants developed an ASD. Infant sex and the presence of more than one older affected sibling were significant predictors of ASD outcome, with an almost three-fold increase in risk for males and an additional two-fold increase in risk if there was more than one older affected sibling. In contrast, the age of the infant at study enrollment, the sex and functioning level of the infant’s older sibling, and other demographic factors did not predict ASD outcome.
Conclusions: The sibling recurrence rate of ASD is higher than suggested by previous estimates. The size of the current sample and the prospective nature of the data collection minimized many limitations of previous studies of sibling recurrence, including
ascertainment bias, stoppage, and over-reporting. Clinical implications, including genetic counseling, are discusse

Press Release from Source

You can read here: http://www.ucdmc.ucdavis.edu/newsroom/newsdetail.html?key=5594&svr=http://www.ucdmc.ucdavis.edu&table=published

Translation

Researchers studied 664 participants in the US and Canada, finding that 132 infants met the criteria for an Autism Spectrum Disorder.

54 children received a diagnosis of “Autistic Disorder”.

78 children received a diagnosis of PDD-NOS.

80% of all children with an Autism Spectrum Disorder were male.

The over all rate of Autsm was 18.7%.

The rate in which there was one older sibling with Autism was 20.1%.

The rate in which there was more than one older sibling with Autism was 32.2%.

In My Opinion

This is simply my opinion of the story, stop reading if you do not want opinions and are happy just having read the details of the original study itself.

This study does not assume any “causes” which means that, even though many people will pull a genetic association out of this, it could still imply a common environmental element to the siblings.

While a much larger study than previous studies, it is still a fraction of all families and even still, the numbers are averages. Which means that the risks will be higher than 18.7% for some families but also less than 18.7% for some families.

As I always say… there is always a risk, no matter what you do or what you know. There’s never a 0% chance.

These are studies on the risk of Autism, there are other risks such as being still born, born with cancer and so on and so forth. To add up all of the risks of all the possibilities could lead to insanity. If no one ever had a child due to risks, there would be no children.

 

“Autism Study of the Month”
The purpose of the Autism Study of the Month series is to provide unpolluted (by the media) information about the studies released at least once a month in the study of possible Autism causes or risks.
You will find links to the actual studies, get to read the “abstract” of the study and, when possible, get the PR release from the source.
When it comes to science, let’s leave the media out of it.

Comments { 3 }

When Autistics Write About Autism

There’s a very unfortunate bit of irony happening within the Autism community that is far more disappointing than ironic… we encourage Autistics to speak up and to not be afraid to say what is on their mind but then when they do, we attack them for not saying what we want to hear.

This has happened quite a few times over the years but even more so in the last week as autism.about.com had a series where adults with Autism were asked to submit a piece about themselves and what they stand for.

Repeatedly, these people would put themselves out there only to be met with some scathing comments from people. Several people have written about this as it really does have a big impact on the Autism community… and here’s why:

Autism Introverts

Autism itself is defined as a social and communication impairment which means that speaking out about something probably doesn’t come very easily. We encourage our children as well as all people with Autism to speak up.. especially about Autism.

Only an Autistic can describe what it’s like, how it affects them. We parents can give secondary accounts, how it affects us and how we perceive it affects our children but when it comes to first hand accounts, we need Autistics to break through their shell.

More so than that, we just want people to be who they are. Autistic or not, don’t be afraid to say what you have to say. Being who you are is one thing that only you can do. But many Autistics are either afraid, uncomfortable or just simply not interested in putting themselves out there.

As a result, Autistics make the best Autism Advocates but because of the nature of Autism itself, it also makes them the worst advocates.

arguingDisagreeing is hard to do

In society, not just the Autism community, it’s not uncommon to see people attack others that they disagree with.

On the internet, people don’t have to look you in the eye to say something hurtful. That makes it a lot easier. You don’t have to deal with their unease, their obvious fear, their expressions… you can just say the most hurtful thing you can think of and leave.

This happens far too often and it’s not just limited to hot topics like religion or politics. It happens far too often in the Autism community as well and not just between parents.

I’ve seen Autistics write about themselves, how proud they are of themselves. Often they write about how they advocate on the higher functioning end of the spectrum only to be attacked by parents that have children on the lower functioning end of the spectrum because they didn’t say what they wanted to hear. The parent disagrees so adamantly that they attack the Autistic person because what they say doesn’t mesh with the parent’s experiences.

It happens with many other topics as well… sometimes they get attacked for the most simple things too, seemingly random things. They can just be positive and be attacked for it, or negative and attacked for it. There’s no rhyme or reason. Nothing is safe.

On the surface, it appears that simply stating “I disagree with what you’re saying because” has become impossible to do, instead becoming a verbal attack of some kind on their intelligence, their logic or some other personal aspect of their being.

No Free Pass for Autistics

All of this is not to say that Autistics can just say or do anything they want without judgement. Autistics still have to abide by the same code of ethics, etiquette and behaviors as the rest of us. Autistics can’t just make their own attacks on people or be rude and not expect some backlash.

If we are to be fair and wish for equality in acceptance, then those that behave poorly should expect some anger in response.

Not all situations are uncalled for… in some cases, an Autistic will be rude or do things that are simply unacceptable and the response from the people is not entirely unexpected. Perhaps some would call it over board but certainly not unexpected.

I Am So Disappointed

In most cases, I am simply disappointed. I’m not sure I can put it any other way than disappointed.

Many times people say things I disagree with and most often times, I don’t say anything. If it’s blatantly wrong however, I may speak up but I’m always careful to be respectful. I don’t know those people, I don’t know what drew them to their conclusions.

I respectfully disagree and state what I think and why. It’s always been my experience that this is the proper way of civil discourse.

What I see most of the time, however, is people calling each other idiots (or other derogatory names) and question their intelligence, or upbringing or something along those lines. Usually they state what they think and don’t even provide a reason for it… they just make their attack, their stance and that’s it. Giving people no recourse but to attack back since there’s very little to either understand or make a case against in rebuttle.

It is so very hard to take something you’re passionate about and disagree with someone respectfully. It’s even more difficult to be civil with someone that so strongly contradicts your beliefs.

But it’s not impossible.

Acceptance… We’re Not Ready

I really want for society to be more understanding… I really want for people to be more accepting of the differences in people, especially when Autism is involved.

But I think it is very clear that we’re just not ready…. as a society, we’re simply not there yet.

Until we can put aside our own hatred, our own anger, we can’t expect those that don’t understand Autism to do it.

We encourage Autistics to come out of their shell, to speak up despite their anxiety and fear and then, when they say something we disagree with, we immediately lash out and bully them back into their shell.

We do this to our own community, we do this to our own children… and yet we expect others to be more respectful?

There is something fundamentally wrong and I am so very disappointed by it.

The Autistic Me has a great post about all of this, some others have discussed it on Facebook and Twitter and in response, Lisa from Autism.About.com has since taken down the 2 most recent posts that were written by adults with Autism.

If it was your child

My advice is, when you see a post by a person with Autism, imagine that person is your child. Imagine you’ve encouraged you child for many many years to speak up and to be brave… to not worry about what people say and just share who they are with the world because who they are is beautiful.

If you and everyone could do this, the responses would be vastly different. Even if you disagree, you’d respond with respect.

Disagreements do not need to be charged with anger or hatred. Disagreements can be made without assumptions of the person. Disagreements can be made without attacking the person.

If that was your child that spoke up proudly, you might still disagree but you’d disagree in a very different manner.

If you are an Autism Advocate, then perhaps you should consider that all people with Autism are your children. For we speak for all, not just our own children. And we encourage all, not just our own children.

Don’t be so quick to hate. Don’t be so quick to assume a person’s history or intelligence level just because you disagree with them.

Speaking out is hard. Be proud… even if you disagree. Be respectful, even if you disagree.

If you won’t… how can you expect others will?

Comments { 28 }

Autism blogs are not news!

I’m finding more and more of a disturbing trend lately… where Autism blogs, by parents, are deeming themselves news media and submitting their work to Google News and other sources.

The media, especially aggregators such as Google News, make it especially easy these days for average people to be heard… not just heard, but to be included in with the other news stories.

Many news sources allow “reader opinions” or even let them write in as “editorial pieces”… which is good, to a point. However many people don’t differentiate these stories from actual, fact checked and verified news stories… not that actual journalists are a whole lot better these days, but you get the point.

fact or opinionWhen the news isn’t the news

There’s a code by which journalists go by, or at least should go by. That is that they reports facts as facts and opinions as opinions. That means that they need to get on the phone, go to the locations, talk to the people and verify that facts are facts.

The news agencies have a very real obligation to the public to bring current, accurate and fact checked information… obviously this doesn’t happen very well, especially with recent events in the media but in practice, this is how it’s supposed to be.

Blogs are a way for people to share their opinions, to add commentary to what they find in the news and to share information that they have acquired. Bloggers can do a fair amount of fact checking but for the most part, the fact checking involves what they read from the media, from other bloggers, from other websites that have random information and some people even use Youtube.

Two wrongs do not make a right

Many bloggers find that the media is slanted or even lie to tell their own versions of stories… so those bloggers write their blogs to combat what they find in the media, to argue their side of the story.

Eventually, they discover that they can submit their own stories as news sources as well, thinking that their own slant will help to balance the system but this couldn’t be more wrong.

First of all, two wrong opinions, event if opposites, have no guarantee of being right. Also, even if one is right and one is wrong, who should the reader believe? Because most people will believe one and not the other, rather than find middle ground or seek more information.

Worst of all, most people won’t even read information from both sides in the first place.

No room for a second opinion

People don’t read the news from various sources to get a second opinion. If they get their news from one source, they depend on that source…. and will rarely go to another source. Especially if it’s the same story.

Which means that they won’t fact check it themselves, they just believe what they read and take it as fact. You see it all the time when you talk to people that argue with you on current events… they’re so sure of something that you believe differently… it’s because you got your news from different sources.

If a person believes your blog posts to be their dependable news source, good for you…  bad for them. I feel bad for them because they now think your opinion is a fact. And whether you are right or wrong… no opinion is fact.

When the solution only adds to the problem

I see these blogs in the Google News lists and I cringe. Actually, I see red. It really upsets me.

These people, upset that the media is deceiving them, go out of their way to deceive people. What kind of messed up logic is that??

It’s even worse when I continue on to read them and it’s so blatantly obvious that it’s an opinion, and more so, a wrong opinion… that is so blatantly obviously slanted to their own views…. that’s what really upsets me.

Now, there’s nothing wrong with having a blog, there’s nothing wrong with even getting hundreds of thousands of readers… if people like your reading, like what you’re saying… great work! Good on you.

But your blog is not news!!!

I wish there was a way to “report” these sites or people such that they’d be de-listed because there’s just no way that they should be included with other news sources.

But as it stands, there is no way to do that. We have to filter ourselves and just hope we can recognize a blog post from a news source.

If our community isn’t messed up enough with the conflicting messages we send the public, do we really need to make it worse by doing this?!?

Comments { 0 }

Autism – Etiquette and Proper Behaviors

Recently, I’ve been reading a few articles where Autistics would do or say things that society would generally consider wrong, or bad behavior, and other people would actually defend them, stating that it’s one of the challenges of Autism.

I have an issue with this.

etiquetteLearning Etiquette

The fact of the matter is that no one is born with good manners. All children have to be taught what is considered a good behavior and what isn’t… as well as etiquette. Saying please and thank you is a good start.

But more so than that, children learn how to eat with their mouth closed, to not slurp their drinks, to respect their elders and so on and so forth.

Autism Etiquette

Is there any reason that a person with Autism should not be taught etiquette or what is considered bad behavior? Of course not.

Temple Grandin often explains how her mother put a lot of emphasis on proper etiquette and how much that helped her later in life.

Children need to learn these things early with or without Autism as behaviors are difficult to change, especially if there is some lack of understanding as to the differences between various similar behaviors. That is to say, for an Autistic, one behavior could be considered acceptable, another not acceptable and yet be very similar in nature. This could confuse them.

So who doesn’t have good behaviors?

The fact is, there’s only two times that someone has bad behaviors…

  1. The child is not taught. The parents, for what ever reason, do not teach a child proper manners, etiquette and behaviors
  2. The child, or person later in life, makes a conscious choice to have bad behaviors

We’ve all said something wrong or done the wrong thing from time to time, but we usually learn from those mistakes. We usually adjust our behaviors along the way.

That applies to those with Autism as well. When you feel bad for what you’ve said, you don’t do it again.

It’s not ok to just be rude or to continue bad manners and use Autism as an excuse. It’s not an excuse. I may lead to some confusion but it’s not an excuse to live a life of bad manners.

Dear Parents

Teach your children good manners. Don’t presume that they won’t “get it”, don’t presume that they aren’t absorbing what you say and certainly don’t presume that it will just never apply to them because they have Autism.

If you want your child to “fit in” with society, you’re going to have to teach them what society will expect of them.

Some people will dismiss the bad behaviors your children exhibit later in life but no everyone will. You would be much better off instilling good manners in them early. It will serve them well in life.

Comments { 7 }

Autism Study of the Month: Ancestors that had mercury poisoning increases risk of Autism

Mercury

Ancestry of Pink Disease (Infantile Acrodynia) Identified as a Risk Factor for Autism Spectrum Disorders

Source – http://www.tandfonline.com/doi/abs/10.1080/15287394.2011.590097?journalCode=uteh20

Abstract

Pink disease (infantile acrodynia) was especially prevalent in the first half of the 20th century. Primarily attributed to exposure to mercury (Hg) commonly found in teething powders, the condition was developed by approximately 1 in 500 exposed children. The differential risk factor was identified as an idiosyncratic sensitivity to Hg. Autism spectrum disorders (ASD) have also been postulated to be produced by Hg. Analogous to the pink disease experience, Hg exposure is widespread yet only a fraction of exposed children develop an ASD, suggesting sensitivity to Hg may also be present in children with an ASD. The objective of this study was to test the hypothesis that individuals with a known hypersensitivity to Hg (pink disease survivors) may be more likely to have descendants with an ASD. Five hundred and twenty-two participants who had previously been diagnosed with pink disease completed a survey on the health outcomes of their descendants. The prevalence rates of ASD and a variety of other clinical conditions diagnosed in childhood (attention deficit hyperactivity disorder, epilepsy, Fragile X syndrome, and Down syndrome) were compared to well-established general population prevalence rates. The results showed the prevalence rate of ASD among the grandchildren of pink disease survivors (1 in 25) to be significantly higher than the comparable general population prevalence rate (1 in 160). The results support the hypothesis that Hg sensitivity may be a heritable/genetic risk factor for ASD.

PR Release from Source

You can read here: http://www.swinburne.edu.au/chancellery/mediacentre/media-centre/news/2011/08/australian-research-finds-autism-risk-

Translation

Essentially what they are saying is that they found 522 people that were diagnosed with “Pink Desease” or mercury poisoning a long time ago and then checked out their grandchildren.

What they found was that 1 in 25 of those children were on the Autism Spectrum… which is a mighty big leap from the 1 in 160 children currently estimated in Australia.

The idea is that those 522 people must have had a greater weakness to mercury to be poisoned by it when other children were not… which, genetically, could mean that their children and even grandchildren would also have a greater weakness to it.

Thus, being exposed to it in seafood, dental fillings or preservatives in some vaccines may trigger a response in those children, including Autism.

My Opinion

This is simply my opinion of the story, stop reading if you do not want opinions and are happy just having read the details of the original study itself.

1. Aside from mercury poisoning symptoms having nothing in common with Autism symptoms, one would have to wonder how many, if any, of those 522 grandparents are Autistic.

2. The study makes no mention of verifying any of the original 522 people’s claims of having mercury poisoning. Being so long ago, it’s entirely possible they were misdiagnosed or not diagnosed at all. There was also no mention of verifying the grandchild’s Autism diagnoses either.

3. The rates, while still higher, resemble the rates found in the Korea total population study. A comparison of a control group vs comparing numbers of children being diagnosed on a regular basis is likely to be radically different for multiple reasons, including parents not recognizing the signs in their children, inappropriate facilities/services and so on.

4. If true, this would indicate that Autism is still largely genetic and is triggered by a toxin, such as mercury. Meaning that Autism could simply be onset since birth or “awoken” by introduction of some outside toxin, such as mercury.

I’ve long held the belief that Autism is not a “one cause, one cure, one story” disorder… that the reason it eludes scientists so much is that there is no one answer.

Do I believe that this study is the answer to it all? No. But it could lead to further answers. It certainly has a better chance than some other recent stories, like this one.

I have my doubts about this one as a lot of wholes were left open in terms of verifying data, it’s collection methods and what the numbers really mean.

But that doesn’t mean that there isn’t some real validity to it’s findings.

As I find more information, more insights, I’ll continue to update this article.

 

“Autism Study of the Month”
The purpose of the Autism Study of the Month series is to provide unpolluted (by the media) information about the studies released at least once a month in the study of possible Autism causes or risks.
You will find links to the actual studies, get to read the “abstract” of the study and, when possible, get the PR release from the source.
When it comes to science, let’s leave the media out of it.

Comments { 2 }