Tag Archives: These Girls

Question?: Rett Syndrome

John asks…

Why are diseases that are found to be curable/reversible in mice?

not in humans?

Serious answers only please.

Asking b/c Rett Syndrome ( a devastating neurological disorder) was completely reversed in mice like 3 years ao & I don’t understand why the same basic concepts that made that possible can’t be used in living humans suffering from this horrible disease

OCTOBER IS RETT SYNDROME AWARENESS MONTH
Care Today-Cure tommorow !

admin answers:

Great question and thanks for posting about Rett Syndrome and helping raise awareness!

In the experiments on mice (1 1/2 yr ago) they silenced the MECP2 in the mice (with insertion of a “stop cassette”), and then un-silenced it to see if the effects would be permanent like they believed they would be. So the mice didn’t actually have Rett Syndrome and in RS there is no “stop cassette” built into it to turn on again. So the real outcome of this study showed that once a cure/treatment is found, these girls could possibly be normal again and not neurologically damaged permanently…this is amazing in itself but doesn’t mean we are any closer to a cure.

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Question?: Rett Syndrome Treatment

Steven asks…

Where does all the money really go-breats cancer awareness?

Okay breast cancer is one of the most well known & publicized diseases out there & they are always doing walk-a-thons to raise money for a cure.

They probably gross more charitable money then any other organization & I just find it puzzling & dis-hearting that to this day there still is no cure for it. I mean there are treatments & in most cases it is survivable but I just dont get where all this money goes.

Im not trying to hurt anybodies feeling & I know alot of people have lost a loved one to this & in no way am I trying to minimize how important awareness & finding a cure for this is but like I said it is kind of disheartening that the most well known disease out there has yet to find a cure..how are less known & underly supported disease suppose to find a cure ( i.e. Rett Syndrome, pancreatic cancer, autism, etc…)
Dizedd, supposing you do have two autistic kids (something tells me you’re a fibber though) then you would know its a pretty wide spectrum ranging from mild to severe. Rett Syndrome being one of the most severe on the spectrum. Look it up, instead of ranting & trying to make me look bad & then tell me seeing what this horrendous syndrome does to these girls you dont think they (& they’re families) deserve a cure

you should be ashamed

admin answers:

I think the movie, Lorenzo’s Oil, gives a good example of what is going on in most organizations that are saying they are looking for cures, etc. Don’t worry about autism, they are already more than decades above the rest. There are gobs of people already recovering their children from autism, so they can live independently. I can’t imagine why anyone would want their children to stay disabled. I personally would not want to be disabled. You can find these gobs of people all over the place. My children no longer have autism. And by the way, one was not treated till age 14, recovered at age 15, and no, he does not want to go back to what he describes as living in a fog and also being mistreated by teachers and students. He is making college plans, etc. And is very happy that he can now live independently. There are so many places you can go to learn about it. Yahoo Groups on autism has gobs of forums. There is probably even one for parents who just want to complain that others should not speak about recovery around them. But, if you are looking for an understanding of health, politics, causes and effective treatments for autism, you will find it.

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Aspergers Syndrome in Young Women

What is it really like living with Aspergers Syndrome? Frankly people with this type of Autism Spectrum Disorder vary as much as everybody else. Last summer at the grand old age of thirty something I realized that I have Aspergers Syndrome.

This came about following the diagnosis of my son who also has an Autism Spectrum Disorder. Like many other people in my position I also have an older daughter who is not autistic and I have been happily married for the last 14 years.

Today we are experiencing a new autistic phenomenon i.e. there are now an increasing number of parents who are only realizing that they themselves have Asperger’s Syndrome when their child is given an Autism Spectrum Disorder diagnosis.

I grew up in a totally different world i.e. 1970’s Ireland where Aspergers Syndrome was totally unheard of. If you had this condition back then there really was nobody to assess you or even an available diagnosis, as this so defined milder form of autism, only officially became a diagnosable condition in 1994.

So growing up I just learned through trial and error how to cope. Australian Professor Tony Attwood has a particular interest in studying the psychological make up of young women with Asperger’s Syndrome. He too feels that the so called ‘Aspie female,’ learns her social rules through observing other girls from a young age. Eventually he claims she can in fact become a master of deception. Often a woman with undiagnosed Aspergers Syndrome have expertly learned how to copy every move, conversation and mannerism from her non-Aspie friends and associates. Observation and intuition, along with being female often means that the young Aspie woman often presents very differently from her male counterparts.

However no matter how good these girls become at acting the part or as one successful Aspie female author once put it in a very well received autobiography i.e. Donna Williams in her book, ‘Pretending to be Normal.’ Inside in these young women’s minds there exists unimaginable turmoil.

Dr. Tony Attwood has also often pointed out in his extensive writing about girls with Aspergers that these females can certainly act the part of being neurotypical but underneath the facade these girls are often psychologically very insecure or maybe even unstable. Many young women out there without an official diagnosis of Aspergers Syndrome will often go on to develop other problems that may mask their primary condition completely. Often to such an extent that this diagnosis never becomes recognized as the real source of their sensitivity, pain or anguish.

The young woman with Aspergers Syndrome can often develop any myriad of other issues because they actually have undiagnosed Aspergers Syndrome. Many female ‘Aspies,’ who have never received any early intervention and no on-going support whatsoever unfortunately often cannot take the strain of denying who they really are continuously. Every social interaction must be psychologically rather than instinctively played out until it becomes a tough, wretched existence constantly living with the pressure of trying to be something that you are not.

Pretending to be normal unfortunately can also lead to the development of personality disorders such as Borderline Personality Disorder or Narcissistic Personality Disorder. Or a myriad of other psychological conditions such as recurring Depression, Social Anxiety, Obsessive Compulsive Disorder, Alcoholism, Drug Addiction, or Anorexia Nervosa.

It is very unfortunate that this is still happening considering how much information is now available about Aspergers Syndrome. While many people may still not know an awful lot about the condition they will at least have heard of it. There are practically no people today who do not know at least a few individuals who are on the Autism Spectrum.

Many people told me my son was just shy, didn’t talk much and wasn’t highly sociable because he was like me. But I on the other hand have always known that I felt different but I just never knew why. I did know though that I didn’t want my son to spend his life wondering why he felt on the outside looking in like I did. Instead I want my child to know from an early age why he feels different and in doing so give him a strong sense of self-worth that will hopefully allow him to grow up understanding fully who he is and how his mind works.

There are still huge economic and bureaucratic barriers to diagnosing children with Aspergers Syndrome, in Ireland in particular. Also with the current bleak state of the economy cut-backs are affecting all children with psychological conditions hugely.
If you look the same as another child then many may just think that you seem a bit strange but there’s nothing obvious to worry about. What we need to make people more aware of in this country is that an undiagnosed autistic child is very likely to go through severe emotional trauma inside their minds growing up and this unfortunately often leads to them having a low sense of self-worth that will then affect their whole life.

Children with autism lack often social skills can have great communication barriers and often think and feel with great sensitivity. I believe that if you give a child with Aspergers Syndrome/ High Functioning Autism the appropriate early intervention then they can go on to live a rich, fulfilling life. However deny them this help and they will be a burden on the state forever due to the psychological damage they will suffer in their formative years.

Mary is currently a full-time carer to her son Adam but hopes in the near future to return to a part-time career as a freelance journalist and writer. She is currently blogging about her experiences of living with Aspergers Syndrome in Ireland today on her facebook page: https://www.facebook.com/mary.kellygodley. At present she is also working on a Memoir, ‘On the Spectrum,’ about her personal experiences of Aspergers Syndrome and her son’s autism story.

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Autistic Disability – How To Recognize The Different Autism Types

Autistic Disability

You may hear autism referred to as a PDD. This stands for Pervasive Development Disorder, and is a blanket leg work for the multiple different autism types. When talking approximately autism most people think of an autistic child in the classic sense, but that is clearly one of the kinds that are used to diagnose children through the present order in today’s world. Autistic Disability

Though the film Rainman is probably the most well-known source that most people base their understanding on, there is more to this condition than what was depicted in the movie. Some children are very similar to Dustin Hoffman’s character, but there are many more different autism types and levels of function known today. The Rainman type of autism, or classic autism, is otherwise known as Kanner’s, and was named for the doctor who studied it in the 30s and 40s. Autistic Disability

This is a lower functioning type of autism characterized by severe communication and socialization problems. These children are hard to reach, and do not interact with most people. They can be clumsy due to poor motor skills, and are prone to repetitive motions and actions. They might have tantrums when the smallest changes in their environment or schedule are made. Some do not speak, and others speak on a limited basis. Autistic Disability

Rett’s Syndrome is also one of the lower-functioning types of autism. This happens in girls only for some reason, and is often paired with mental retardation. These girls are greatly impaired when it comes to movements, and they rarely speak. This autism type has been classified as a genetic defect. There seems to be no explanation as to why it only affects girls. Autistic Disability

All other types are attributed to males 75% of the time. Childhood Disintegrative Disorder is something that is very shocking for parents, perhaps even more so than children who are identified early with Rett’s or Kanner’s. This is something that happens after a child has appeared to develop quite normally. They have the usual range of speech and motor skills for their peer group. Autistic Disability

Then at some point, usually between ages two and four, they regress into a severe form of autistic disability. No one is sure why this happens though some believe surgery or illness can bring it on. That is not true for all of these children, however, so nothing concrete has been proven. Don’t let your love ones suffer anymore! Lead them out through Autistic Disability program now!

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Different Types Of Autism – How To Recognize The Different Autism Types

Different Types Of Autism

You may hear autism referred to as a PDD. This stands for Pervasive Development Disorder, and is a blanket term for the many different autism types.

When talking about autism most people think of an autistic child in the classic sense, but that is only one of the types that are used to diagnose children with this condition in today’s world.

Though the film Rainman is probably the most well-known source that most people base their understanding on, there is more to this condition than what was depicted in the movie. Some children are very similar to Dustin Hoffman’s character, but there are many more different autism types and levels of function known today.

The Rainman type of autism, or classic autism, is otherwise known as Kanner’s, and was named for the doctor who studied it in the 30s and 40s. This is a lower functioning type of autism characterized by severe communication and socialization problems. These children are hard to reach, and do not interact with most people. They can be clumsy due to poor motor skills, and are prone to repetitive motions and actions. They might have tantrums when the smallest changes in their environment or schedule are made. Some do not speak, and others speak on a limited basis.

Rett’s Syndrome is also one of the lower-functioning types of autism. This happens in girls only for some reason, and is often paired with mental retardation. These girls are greatly impaired when it comes to movements, and they rarely speak. This autism type has been classified as a genetic defect. There seems to be no explanation as to why it only affects girls. All other types are attributed to males 75% of the time. Different Types Of Autism

Childhood Disintegrative Disorder is something that is very shocking for parents, perhaps even more so than children who are identified early with Rett’s or Kanner’s. This is something that happens after a child has appeared to develop quite normally. They have the usual range of speech and motor skills for their peer group. Then at some point, usually between ages two and four, they regress into a severe form of autistic disability. No one is sure why this happens though some believe surgery or illness can bring it on. That is not true for all of these children, however, so nothing concrete has been proven.

The higher functioning form of autism is known as Asperger’s. These children can often be misdiagnosed in the early years. They have better communication and socialization skills, but they are still somewhat limited. However, many of these children aren’t diagnosed until they are in school when the difference their peers and themselves become more apparent. They often respond well to behavioral treatments, and can have a very ‘normal’ life if they are put through these programs and therapies at the earliest possible age.

There is another type of autism called PDD-NOS. This is when a child is thought to have autism, but their condition does not seem to be associated with the other four more definite types. They have autism, but they seem to fall out of each category. They may have symptoms or behaviors that fall within all of the other different autism types, but do not fit one type exclusively.

Most children with any of these five autism types will be diagnosed before the age of five, and the prognosis will depend on the function of the child, and how early they can begin to go through therapies.

There is no cure for autism, and because the reasons why some children develop this condition are so unclear, there is no way parents can prevent it from happening. More research is needed to find the origins of the condition. Once that can be found, perhaps a cure or more effective treatments can be administered, tailored to the different types of autism. Different Types Of Autism

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