Autism registry

Autism Registry: Scary Government Tracking or Helpful Research?

Some states have recently formed an autism registry. If you are not in a state that has such a registry, you may be wondering what this is, what it’s for, and if you should register should your state ever start something similar. Parents who are very protective of their children may be very wary at first—after all, a state registry that tracks who has autism, where they live, and documents information about the mothers and their children seems a little invasive and scary. However, there are some positive points to registering your children with autism and registering important information about your family.

Autism registry in NJ

Autism research is a very important and positive reason for adding your family to the registry. All of the information the researchers gather about autism, where it seems to be most highly concentrated, the age of both parents when they conceived a child that was later diagnosed with autism, etc., is kept confidential, but it helps determine if there are any common factors. The common factors can then steer researchers in a direction that has not been explored before, as they try to find a cure or a preventive measure and help reduce the frequency with which autism is discovered and diagnosed.

Another reason for registering is so that when there is a cure, a treatment or a preventive measure found, your family can be one of the first ones to hear about it. Researchers who compile the list of names and data can present their findings to you and your child to see if you would like to reverse the disorder (should it ever be possible), or if you would like to remain as you are.

Government planning for the future welfare and financial needs also relies on this collected data. Social Security Administration will have to fairly and accurately predict the number of group homes, nursing homes, special care attendants, disability benefit amounts per person, and life expectancy for healthcare for every autistic child in America. Since the current number of autistic children is growing at an unprecedented rate in human history, there is no data bank to assist the government with these tasks, at least not without the help of the willing and volunteering families and the state registries.

Currently, many states on the East and West coasts of the U.S. have autism registries. Some require that mandatory reporters who discover and diagnose children with autism register your child and your family without your permission. Other states give you the option, while letting you know that if you do volunteer your information, you may be offered more public assistance and referred to extra programs that can help you raise your special needs child.

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Autism by Race Statistics

Shocking autism statistics worldwide

The alarming facts about the United States, autism is one of the fastest growing developmental disorders.  What is the chance of having an autistic child? According to the National Institute of Mental Health, on average, 11 out of every 1000 children is diagnosed with Autism Spectrum Disorder.  This is quite alarming, since the average worldwide is 1 out of every 1,000.  Autism is more common in boys (roughly 2 in 100) than in girls (roughly 2 in 500). In USA alone there are more than 2 million individuals are diagnosed with autism.

Ethnicity statistics on autism

Who does autism affect? Autism occurs in all racial, ethnic and cultural groups.  However, the rate of autism among these groups varies as indicated in the graph below.

Prevalence of Autism by Race

Autism occurs in 1 out of every:

140

       

120

 

100

 

80

60

40

20

0

White

Black

Asian

Hispanic

Several survey shows autism rates higher in white children.

One of the biggest reasons why autism appears more frequently in white children is due to diagnosis.  Although schools are vastly improving upon their methods of identifying potential children with special needs, statistically, a greater percentage of white children are assessed and diagnosed than children of other ethnicities.  In fact, according to Psych Central, white students are twice as likely to be identified with Autism Spectrum Disorder than students who are Hispanic.

Are children of African American, Hispanic and Asian being identified?

Research indicates that non-white autistic children tend to be identified at an older age.  Many of these children are first diagnosed with a speech delay, ADHD, conduct disorder or adjustment disorder. For some children, if two different languages are spoken in the home, any communication delay is thought to be a language barrier.  In some cases, parents don’t have the financial or educational resources to have their children assessed prior to starting school.

Early identification of Autism Spectrum Disorders (ASD)

Regardless of race, ethnicity or culture, any child suspected of having a disability, especially autism, needs to be assessed and diagnosed as early as possible.  By treating autism early, it can greatly reduce symptoms and increase the child’s ability to learn and adapt to his environment.

“Discover” The Latest On Autism Research

It’s always exciting to hear about the different kinds of research conducted for medicine and disorders, including and especially for, autism.  In October’s issue of Discover magazine, an article summary on the front page caught my eye.

“Brain-Bending Research: Treating autism, Alzheimer’s and stroke by re-wiring neural circuitry.”

I immediately flipped to it and settled in to read.

For parents who can’t get past all of the biological and neurological jargon, it might be tough to read and tougher to understand, so I’m summing it up here and everyone can go read the article in full on their own.

What the article boils down to is this:

Neuroplasticity, a highly specialized condition of the brain that allows itself to “rewire” when certain areas are damaged, was the focus of this doctor, her team and their research.  The research is ongoing because they have found some very interesting things that most biologists and neurologists didn’t even think existed.  It defied the standard teachings about the biology of the human brain and how it works.

Because it isn’t ethical or even possible to study living brain tissue inside people’s heads, mice are used.  The mice in this case were denied some very important “proteins” that defend against infectious diseases.  If they were to come into contact with the littlest germ, they would die because they have been bred , essentially, to have no immune system.

I stopped reading here.  My heart sank.  If the future treatment for autism was a trade-off between children inside sterile bubbles and having autism, I think I’d choose the autism.  I read on, anyway.

What happened to these mice next blew me away.  I had heard from many science shows on TV how kids and young adults had almost completely recovered from horrific head traumas and that the brain finds other routes to work, but this new research was just fascinating.  Although the special proteins that aided in the mice’s immune defenses had been taken away, their brains rewired such that the remaining proteins left in the brain caused the neuroplasticity in their little brains to turn them into brainiac mice.  It didn’t matter how old or young the mice were, their brains rewired to think better, problem solve better, reason better and strategize better.

This new data means that the neurological conditions wherein the human brain has been “attacked” and altered might be reversible, or stopped at a point that it does not progress.  Children with autism might never be diagnosed as having autism, and adults with ALS or Alzheimer’s could live longer, fuller better functioning lives.  The only trick is, they would have to produce a medication that only affects the brain and not the body.

These specific proteins are referred to as MCHI.  They hide out in the blood brain barrier but perform and entirely different function there then they do in the rest of the body.  They exist for the immune system in the rest of the body, but act as mini neuroplastic devices for the brain.  What that actually means is that they fix damaged areas of the brain and reroute functions to another area, helping to “switch it/ switch it on”.  According to the article, the doctor’s paper on all of this was published well over fifteen years ago, which means she and her team have come a long way since then.

Because a lot of neurologists believe that autism is a neurological condition and not just a physical or psychological one, the impact this research has on thousands of children is really meaningful.  Although it’s not likely that children who are currently diagnosed with autism will directly benefit from this research, ten to twenty years down the road when other children are diagnosed most definitely will.  By then, today’s children will be in their twenties and thirties, but the hope is that there will be a “neuroplasticity pill” that can make a serious difference in their lives nonetheless.

A rewired autistic brain means they would all be able to speak.  They might have less complications with sound, touch, taste, sight and smell.  They would be less anxious in large groups and more comfortable with people in general.

The flip side, and this is just conjecture  based on the article and the research findings, is that the first test subjects might have to spend their entire lives in a germ free lab.  They might lose some of the magnificent intellectual abilities they have or those abilities might be doubled, turning their brains into “superhuman intellect”.  It could even switch on “dead zones” in the brain during the rewiring process; no one knows for sure, and that is all much further down the road.

Latest findings in the same research by the same doctor shows that new motor neurons (cells in the brain) and the synapses (connections made between cells) are regrown.  That’s pretty intense, because they act as the brain’s “delivery system” for everything else the brain and body do.  Since autism scans of the brain show a deficit in the right kinds of cells, scientists may be much closer to solving the  autism puzzle than we really know or think.

Right now, parents will have to accept their children as they are and contend with the behaviors and challenges as best as they can, but a couple of decades from now that could be quite different.  Then parents will have to decide if they want their children to “be as normal as possible” or stay just as they are.  That is a seriously tough call for any parent who loves his/ her child.

At any rate, the article was truly fascinating an a great read.  It certainly would give any reader and parent of an autistic child pause, and some serious food for thought.  The usual “what if” questions surface, and you’re left wondering just what you would do in that futuristic situation of choice versus the present “no choice”.  A lot of parents might, but then again, a lot of parents love their children no matter what and wouldn’t.

Would you?

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