Searching for a cause

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Hello,

I work for Birth Defect Research for Children, a national non-profit organization that provides information, support and parent matching for families of children with birth defects and functional disabilities. We also sponsor the National Birth Defect Registry, a research project designed through a collaboration of seven scientists to identify associations between prenatal factors and birth defects both structural and functional. Autistic Spectrum Disorders are included in the conditions we collect data on in the registry.
In 2009, we released a report of 137 cases of Autism Spectrum Disorder in the registry. We found several intriguing trends in our cases such as;
• Over 60% of our cases with ASDs also had structural birth defects. These were primarily Central Nervous System and Craniofacial Defects.
• Seven cases of ASDs reported chromosomal disorders. There were also two cases of Goldenhar Syndrome. Goldenhar Syndrome has been previously linked with Autism.
• 40% of our ASD cases reported associated developmental problems but not structural birth defects.
• 21 families who reported one child with an ASD had other children with structural birth defects. Seven families had two children with an ASD (including one set of twins).
• In 12 cases, one parent served in the first Gulf War. In 13 cases, one parent was a Vietnam veteran.

I am happy to email you the full Autistic Spectrum Disorders Report since I am unable to post a link to it.

Since these findings were based on only 137 Autism cases, we would like to expand the number of registry cases to 500 or more so that we may explore these trends on a deeper level. If you are a parent of a child with an ASD, please take the time to visit our website at birthdefects . org and read more about the National Birth Defect Registry. We hope you will decide to participate. The registry is sponsored by public donations and personal information is never released without your permission. Another benefit of the registry is our parent matching option. This option allows us to connect you to parents who have children with the same conditions as your child.
Please do not hesitate to email or call with any questions. We will also be at the 19th annual Center for Autism and Related Disorders conference hosted by the University of Central Florida. We hope to release this report during Autism Awareness month but need your help.

For a start, you might want to be aware that many of us here do not consider autism in and of itself a defect. Yes, many of our children are disabled in one way or another by various aspects of autism, but there is more to the story than labeling something a "defect." I am sure you are a reputable scientist and I sincerely hope my feelings are wrong, but your post is setting off my internal "eugenics alarm."

I'm a big fan of accurate scientific research, and am as curious as the next person about the causes of autism, but I think cause is far less relevant than ensuring autistic people get the help they need.

I wasn't going to respond because I feel pretty much the same as momsparky, but I'll throw in my 2 cents. I think it is important for science to discover the cause or causes of autism, if for no other reason than it will surely lead us to a much more profound understanding of how all human brains work. But, I don't think there is anything my son needs to "recover" from, which is what the Center for Autism and Related Disorders proclaims to offer in huge 78 pt font on the home page of their website. So, I don't how closely, if at all, you are related to that organization but you might want to think twice about invoking their name. Many, not all, here are not much about a "cure" for autism. Granted many of the parents here have kids who are high functioning and different views have been expressed from some members who have kids on the low functioning end of the spectrum.

Yikes. You are barking up the wrong tree.

Good Morning everyone! We certainly did not mean to stir the pot. Our relationship with CARD was simply that they helped direct families to our registry. We are independent of any organization. Our goal is to expand the number of Autism cases so we can see if the trends we found in our previous study hold true. We do not conduct these studies for the benefit of any specific scientific organization. If you read our about section you will find the story of how BDRC was founded. This organization was started by a woman who went through her own fight to find the cause of her son’s birth defect. She then spent her time helping others do the same. If you read about Betty's story you will see she is no stranger to fighting the hard battles.

We do however, appreciate your feedback.


Our director also wanted to include a note so I will post it as well.

Dear Mom Sparky,

I am sorry that you were troubled by the wording of our message. While birth defects are generally considered to be structural in nature like cleft palate, missing limbs and heart defects, there is a new research that suggests that disturbances in the formation of the systems that run the body can also occur in the prenatal period. These would include the immunological, neurological, and endocrine systems. Outcomes from these disturbances could be chronic illness; childhood cancers; learning and attention disorders; thyroid and pituitary disturbances and possibly Autism Spectrum Disorders.

In the data that we have analyzed from the National Birth Defect Registry, 60% of the cases of ASDs have occurred in the context of structural birth defects which clearly have a prenatal not a post-natal origin. We were surprised by this result and that is why we are seeking more cases.

Regarding the term birth defect. This is a scientific description of a bodily difference at birth, not a suggestion that a child is defective.

While treating ASDs is naturally a top priority for parents, I know that you would want to prevent ASDs in other children.

Sincerely,


Betty Mekdeci
Executive Director
Birth Defect Research for Children

That is a bit of a yes and no, actually, because many of the issues one sees with ASD's are less about there being anything wrong with the child, than the fact that the child has to live in a society which does not suit them. And then there is the Downs Syndrome problem: the "cure" many people will come to,if given the opportunity, is to have the ASD child never be born.

I appreciate you taking the time to respond and interact, and I will come back when I have more time. I actually have wondered about possible connections between my son's cesearean birth and either sensory issues or severity of his hyper-mobility, for example.

Ok well I am not a parent just someone who has enough Aspergers Syndrome symptoms to be diagnosed with it if only I could afford to do so.

But I do find this post a bit intresting because I actually do have some rather odd things going on...the most I was ever told really was it might be some sort of genetic mutation I would be more specific but I would have to find the letter they sent me from the last tests that were done to get the details. But yeah they found some unusual genetic/physical characteristics and as far as they could tell it was not causing me any physical symptoms but weird none the less. I have some difficulties in life, but I don't feel that curing me to the point were I am neurotypical would help....I feel like its society that needs a cure.

Also not sure if this is the AS that causes it, but some of my differences are good things.....that I would probably lose if I were cured, so I am not much into the idea of preventing further cases of Autism as that too me says someone does not want us 'weirdos' around anymore.

Questions:

Specifically, what information are you looking for?
What steps will you take to ensure participant anonymity/confidentiality etc.?
Who will have access to participant information?
If this is a National Birth Defect Registry you are talking about won't anyone outside of whereever you are from be excluded?

Lastly, you don't seem very professional. You don't have any particular regard for the sensitivity of this issue. First you use terms such as defect when you ought to know that many parents do not feel this way. You should have been especially careful since you apparently weren't even using the 'lay' understanding of the word*.

Secondly, in response to complaints about your terminology you go on to enforce your biased opinion that a) all parents want to or ought to want to 'cure' their children, b) all parents want to or ought to want to prevent ASD in other children. I would like to know what you mean by 'prevent' ASD. It would seem to me that even should you identify potential risk factors for ASD the only course of action would be to abort the child before they are born. What exactly are you implying?

I think you should stop and think about the way you communicate to parents in future. You need to be more careful. This is a sensitive issue.

Yup, alarm bells are really, really ringing now. Autism is barely understood. Many of us who have it don't even have the benefit of a diagnosis. However, classifying it as a "defect" means that your organization has even less of an understanding of it than the general population. At the moment, I'm not talking about the implied ableist thinking that appears in the language of your post, which I also have a problem with: http://en.wikipedia.org/wiki/Ableism

I'm talking about another issue entirely: what if - even though I'm not saying there is anything wrong with that - autism isn't always a disability or, as you put it, a "defect." (An antique word I REALLY have a problem with, because it implies that we are somehow non functioning machines with parts that don't work.) There is good evidence to suggest that autistic qualities are an important part of human evolution. I'm not trying to say that autism is all lollipops and roses, for some people the disabling aspects are the predominate force in their lives - and those people need help and understanding.

I'm trying to say that if you start by placing your focus on the disabling aspects of autism, you and those you represent will have a very distorted view, and I have a feeling this may extend to other communities. In other words, registry of autistics who (or whose parents) perceive themselves (or their children) to be extremely disabled or defective, which is what you are likely to get with your current approach, will not give you a less distorted picture.

In short, you have skewed the results of your research before you even begin by the choice of the title of your organization, and by the language you use when you seek participants.

I'm a big fan of this blog on Psychology Today, and the current post is timely to this discussion: http://www.psychologytoday.com/blog/asp ... disability

I agree with DW. Our kids, my kid, and I do not "suffer" from autism. We are only disabled by living in a society that doesn't suit us. Note: I am not saying world. There are ways to get around the sensory issues and other issues that are problematic--at least when societal attitudes haven't made it impossible to obtain or use these ways.

It's not that I mind the research so much. The connections are interesting but your organization does smack of eugenics. You have clearly stated it. Genomics research has the potential to do a lot of good, but it is a double edged sword. I don't think that the human race has the wisdom to play God with genetics.

Who gets to decide what is a "defect"? My uncle was born with one arm. I don't know if he'd rather have been born with two arms but the determination he built within himself to do anything anyone else could do led him to build the first Non-Smokers Inn in the United States. This became one of the pieces in the movement to end nicotine abuse. Disabled? Hardly. Today with the "womb with a view" a person like him might very well be aborted.

I have been so blessed reading the posts by the "low-functioning" autistics on this forum. I know in person and online so many autistics or people with other unusual traits who could greatly contribute to society if given just a bit of support and a whole lot more acceptance.

I agree your data is skewed. The only thing you can possibly say from your data is that ??% of respondents with birth defects also have ASD. NOT the other way around. There is no way your data says anything about those with ASDs.

You are going to get quite a backlash here discussing a "cure".

Yes, our lives have difficulty but we wish that organizations would spend their time HELPING our kids, not trying to rid the world of them.

Unfortunately, I am unable to send the link to our site in its complete form. You can find more information about who we are and a FAQ about the registry at birthdefects dot org

Our director is happy to reply to any questions over our private email. We certainly appreciate any concerns you may have. I will point out that we have never said we are searching for a cure. In fact, it is the position of our organization to learn about the possible CAUSE of any functional disability or physical birth defect. In fact, our director was one of the first people to stand up against the pharmaceutical company that released Bendectin, an anti-nausea pill given to pregnant women in the 1970s.
We are dedicated to identifying the preventable causes of birth defects. This has led us to focus on associations between birth defects and exposures to radiation, medication, alcohol, smoking, chemicals, pesticides, lead, mercury, dioxin and other environmental toxins.

Again we thank you for expressing your opinions.

I would be interested in solving the question of if ASD sometimes negatively affects someone worse than it has to, because of some intertwine between environmental factors and the genetics, but not the existence of ASD. Granted, I have a high functioning child, so I have the advantage of being pretty sure he will live a happy, successful and independent life but, as with many parents here, I also think I have one of THE coolest and most interesting kids EVER. Yes, he has challenges, but if getting rid of those means getting rid of all the things that make him amazingly unique, I wouldn't do it, and neither would he. He is how he is because of the ASD; it all comes together. ASD doesn't only create challenges, it also creates kids who can literally watch the grass grow. We can learn from them.

But, in a family full of genetic ASD, I do have to wonder why my son carries negatives the generations before him didn't have to. How they got "so" bad. Sensory issues and hyper mobility/disgraphia/hypotonia. He IS disabled by the hyper mobility/hypotonia/disgraphia, even though he isn't really by the other things.

Kids like ours teach you to challenge your assumptions of what is normal, what is defective, and what a person should want in life. I consider that a GOOD thing.

Unfortunately you did start things off by using the dreaded "D" word. As a person with Aspergers, I certainly don't see myself as "defective" anymore than someone with brown hair, or buck teeth is defective. Technically, we all (AS & NTs alike) have our "defects."

"Regarding the term birth defect. This is a scientific description of a bodily difference at birth, not a suggestion that a child is defective." You know, even if this is a scientific term, it is still offensive to many of us.

You also used the dreaded "C" word. Autism is NOT a disease or infection that one can "cure." Yes, I would like to find out the root cause of Autism, but talking about a "cure" is not a popular idea among most Autistics.

As I see it, the only "defect" is the way that NTs see us and treat us. The first thing that should be addressed is respect. No matter how we are, we are all still human beings. We have feelings, even if we don't show them.

Ooh, sorry OP, you just walked through a minefield and tripped every single mine. Luckily you posted this in the parents section.

If I was a jerk, I'd tell you that you'd have better luck in the Autism Politics and Activism section. I'm not a jerk. DO NOT post this there. You will be eaten alive.

So you don't want to cure autism, you just want to prevent it? Woah! I'm getting out of here. So many mines!