Autism Awareness Month

[LunicaAshes]

April is autism awareness month. As someone who is on the spectrum myself, I urge anyone interested to do some research into this complex neurological difference.

To many people, they know only the very narrow aspects of stereotypical, low-funtioning individuals. But there are many who struggle with other variations . Some do not even get diagnosed growing up, as I did not. Females often present quite differently when it comes to Asperger's Syndrome.

Most support I see is for parents of children on the spectrum, and most activism is about finding the cause rather than understanding the differences present, so it gets really lonely. But I wouldn't change who I am for the world.

If anyone has any specific questions about this disorder, I'd be happy to share what I know. Please become familiar with the vast array of symptoms of the various manifestations, so that you may be able to recognize it in someone that really needs to understand why they are so different.

I will be posting links and info as time allows.

Asperger's in females (can be very different than in males. These include explanations for why girls are underdiagnosed):
http://autisticconjectureoftheday.bl...s-part-ii.html
http://www.nas.org.uk/nas/jsp/polopo...?a=3370&d=1049
http://www.yourlittleprofessor.com/girls.html


Genetics:
http://autism.about.com/od/causesofa...oldparents.htm

How diagnosis can be beneficial to adults (in Scotland, but can be applied other places):
http://www.autism.org.uk/nas/jsp/pol...?d=1245&a=8018

Links to more links:
http://www.aspergerfoundation.org.uk/info_children.htm
http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=1245

[LunicaAshes]

Diagnostic criteria for the various autism spectrum disorders (pervasive developmental disorders) from the DSM IV TR:

Autism

A. A total of six (or more) items from (1),(2), and (3), with at least two from (1), and one each from (2) and (3):
1. qualitative impairment in social interaction, as manifested by at least two of the following:
(a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
(b) failure to develop peer relationships appropriate to developmental level
(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g.,by a lack of showing, bringing, or pointing out objects of interest)
(d) lack of social or emotional reciprocity

2. qualitative impairments in communication as manifested by at least one of the following:
(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
(c) stereotyped and repetitive use of language or idiosyncratic language
(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(b) apparently inflexible adherence to specific, nonfunctional routines or rituals
(c) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

C. The disturbance is not better accounted for by Rett's Disorder or Childhood Disintegrative Disorder



Asperger's Syndrome

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g.,by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity


B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:

1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g.,hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning

D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)

E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood

F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia



Rett Syndrome

A. All of the following:

1. apparently normal prenatal and perinatal development
2. apparently normal psychomotor development through the first 5 months after birth
3. normal head circumference at birth


B. Onset of all of the following after the period of normal development:

1. deceleration of head growth between ages 5 and 48 months
2. loss of previously acquired purposeful hand skills between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand wringing or hand washing)
3. loss of social engagement early in the course (although often social interaction develops later)
4. appearance of poorly coordinated gait or trunk movements
5. severely impaired expressive and receptive language development with severe psychomotor retardation



Childhood Disintegrative Disorder

A. Apparently normal development for at least the first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior.

B. Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following areas:

1. expressive or receptive language
2. social skills or adaptive behavior
3. bowel or bladder control
4. play
5. motor skills

C. Abnormalities of functioning in at least two of the following areas:

1. qualitative impairment in social interaction (e.g., impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
2. qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
3. restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypes and mannerisms

D. The disturbance is not better accounted for by another specific Pervasive Developmental Disorder or by Schizophrenia.



Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism)

This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes "atypical autism" - presentations that do not meet the criteria for Autistic Disorder because of late age onset, atypical symptomatology, or subthreshold symptomatology, or all of these.

[kate00]

In before the vaccine causes autism crowd

[eazy_mas]

I child with Autism give alot of problem to the family.

It very hard to understand them and what they want. I know a person who his brother have autism and I know my cousin who has autism he is older than me.

For people who one of there family member have autism, you need patience and alot of it.

[LunicaAshes]

I child with Autism give alot of problem to the family.

It very hard to understand them and what they want. I know a person who his brother have autism and I know my cousin who has autism he is older than me.

For people who one of there family member have autism, you need patience and alot of it.

Yes, absolutely. But I'm always disappointed by the outpouring of compassion for the parents of young children with classical autism, while I have yet to see any organizations or activism for those of us who are adults struggling with being somewhere on the spectrum ourselves. I have no way of even having services provided to me, despite needing occupational/physical therapy.

Really, though, I want to focus this thread on awareness and information in general and not my own personal annoyances, so [/rant].

[eazy_mas]

Yes, absolutely. But I'm always disappointed by the outpouring of compassion for the parents of young children with classical autism, while I have yet to see any organizations or activism for those of us who are adults struggling with being somewhere on the spectrum ourselves. I have no way of even having services provided to me, despite needing occupational/physical therapy.

Really, though, I want to focus this thread on awareness and information in general and not my own personal annoyances, so [/rant].

it a tough world. childern are cute so they get more attention than adult.

[LunicaAshes]

Bump.

Added some links to my OP.

[Idontakefishoil]

Yes, absolutely. But I'm always disappointed by the outpouring of compassion for the parents of young children with classical autism, while I have yet to see any organizations or activism for those of us who are adults struggling with being somewhere on the spectrum ourselves. I have no way of even having services provided to me, despite needing occupational/physical therapy.

Really, though, I want to focus this thread on awareness and information in general and not my own personal annoyances, so [/rant].

Care to explain your situation? If not, I get it.

[Dig]

I autism what you did thar.

I'm joking around of course. Reps for raising awareness Sheduma .

[LunicaAshes]

Care to explain your situation? If not, I get it.

I don't mind talking about my own personal experience, or answering any question people might have. I think that's a great way to work towards more understanding.

However, I'd like to leave this thread for posting links and information from an objective/scientific perspective rather than my personal one. I can start another thread if there's any interest in more personal experience/subjective stuff.

[Enso]

A former co-worker of mine adopted an autistic child. That kid was the most an absolute joy to be around. He had almost no use of his arms, couldn't walk, and could not speak....yet he never failed to laugh and smile. He had his struggles of which you could definitely see, but I relished in how the most simple of things made him smile. I'll never forget his laugh.

I also did volunteer work with the Special Olympics as a basketball coach. I HIGHLY encourage everyone at least once in their life to do so. It is a life changing (for the better) experience.

[Ibanez]

If you can, look up a documentary about a savant named Daniel Tammet. He has austism and is crazy good at math and languages.

[LunicaAshes]

If you can, look up a documentary about a savant named Daniel Tammet. He has austism and is crazy good at math and languages.

His name came up at a seminar I was at recently. They were talking about the documentary and his book - Born on a Blue Day

The title is a reference to synesthesia, in which a connection between normally unrelated senses causes an association between seemingly unassociated things, such as days of the week and colors, in the author's case. This is somewhat common in autism spectrum disorders. The woman giving the seminar said that when she recommended the book to a autistic teenage boy she was working with, he said "I was born on a GREEN day!"

It's fascinating stuff, though savants are by far the tiniest minority.

More on synesthesia: http://psyche.cs.monash.edu.au/v2/ps...0-cytowic.html

[Honey75]

My son has autism and yes, we need tons of patience with him and his siblings. A tough job, but somebody's gotta do it!

[911medic]

I'm a parent of a high functioning (not Asperger's) autistic daughter. I appreciate you posting this thread and agree with you that there should be more focus, and money, placed on providing services to adults "on the spectrum" with or without a diagnosis of classical autism. Don't get me wrong, I would like to see a "cure" for autism as much as anyone, but I'd love to see some of the money going into looking for a cure diverted into providing some help for those that are left out because of their diagnosis code.

I have to fight with the school systems because my daughter has progressed to a point where she is now in nearly all typical classrooms and is doing well in school. Occasionally, someone will make an effort to get her diagnosis changed from autistic to aspergers which would affect her services. Fortunately, we have a great MD for her that will not sway from his diagnosis and helps us when needed to protect her.

Good luck to you and thank you for bringing Autism Awareness Month to the board.

Reps to you.

[LunicaAshes]

I'm a parent of a high functioning (not Asperger's) autistic daughter. I appreciate you posting this thread and agree with you that there should be more focus, and money, placed on providing services to adults "on the spectrum" with or without a diagnosis of classical autism. Don't get me wrong, I would like to see a "cure" for autism as much as anyone, but I'd love to see some of the money going into looking for a cure diverted into providing some help for those that are left out because of their diagnosis code.

Interestingly, adults with an autistic spectrum disorder seem to be the only ones who DON'T want a cure. Not to speak for them all, but I've read it many times from many individuals.

I have to fight with the school systems because my daughter has progressed to a point where she is now in nearly all typical classrooms and is doing well in school. Occasionally, someone will make an effort to get her diagnosis changed from autistic to aspergers which would affect her services. Fortunately, we have a great MD for her that will not sway from his diagnosis and helps us when needed to protect her.

Good luck to you and thank you for bringing Autism Awareness Month to the board.

Reps to you.

Reps back, thanks

The school system is definitely ****ty, but it's good to see someone fighting for what their child needs. Don't give up!

[LunicaAshes]

More on synesthesia: http://psyche.cs.monash.edu.au/v2/ps...0-cytowic.html

lol, that article was talking about how synesthetes have a fairly high percentage of people who have "unusual experiences" such as deja vu, clairvoyance, precognitive dreams, etc:

Unparalleled among my collection of other-worldly experiences is that of a woman who claimed to have been abducted by aliens, and to have enjoyed sexual congress aboard their space craft. Having experienced aliens, she confided, human males could no longer satisfy her. (My thanks to Larry Marks for this gem.)

[MURedHawk235]

Is that what's going on? Every time I go to CNN.com there is something about autism. I was wondering what was going on

[BlazerXX]

In before the vaccine causes autism crowd

i don't think vaccines are the sole cause, but they are a contributing factor without a doubt

[LunicaAshes]

i don't think vaccines are the sole cause, but they are a contributing factor without a doubt

I think that some people have a natural sensitivity to them. Many on the autistic spectrum have food sensitivities in one way or another, and when those foods are avoided, their symptoms become more manageable.

Similarly, I think that vaccines are what sets off a pre-existing condition into overdrive for some individuals.

[LunicaAshes]

Don't get me wrong, I would like to see a "cure" for autism as much as anyone, but I'd love to see some of the money going into looking for a cure diverted into providing some help for those that are left out because of their diagnosis code.

Here's a link that talks about "cures" - http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=117

Of course, some people will go too far into the black or white area, but there is something to be learned from them, and a grey area to be found. So much funding has gone into finding the source and "cure" that not nearly enough is known about how autistic brains work.

For many adults, it is viewed as a "who I am" not a "what's wrong with me." I'm not a person with Asperger's, because without how my brain operates, I am nothing. And the Asperger's defines how it operates. It's similar to Deaf culture, which is why you will see me not using the person-first terminology that is common and PC with other conditions.

But again, I don't want to turn this into a preachy thread. I might still start one for personal experience/opinions at some point if anyone wants. There's a lot more to be said, but I want to keep the politics of it out of this one and focus on the science... since the R/P is the unofficial Science section as well.

[ll ReNeGaDe ll]

Cool thread. I work with Autistic children and adults using ABA (Applied Behavioral Analysis).

[1devil]

I think that some people have a natural sensitivity to them. Many on the autistic spectrum have food sensitivities in one way or another, and when those foods are avoided, their symptoms become more manageable.

Similarly, I think that vaccines are what sets off a pre-existing condition into overdrive for some individuals.

My feeling is that the high tech industries are the largest source of the increase in Autism. The field naturally attracts individuals who have milder forms of the disorder such as Aspergers. These were individuals that in the past would not have been regarded has having marketable skills. What you then see happening is individuals who both have the disorder marrying and then having children with more severe manifestations of the disorder. If you look at the largest concentrations of autistic individuals in this country they are almost all in areas with large numbers of people employed by the high tech industries.

[guym]

I know someone who is functional enough, but not able to work. Ask him what day of the week Aug. 5 659 was and he'll tell you. Amazing.

[LunicaAshes]

My feeling is that the high tech industries are the largest source of the increase in Autism. The field naturally attracts individuals who have milder forms of the disorder such as Aspergers. These were individuals that in the past would not have been regarded has having marketable skills. What you then see happening is individuals who both have the disorder marrying and then having children with more severe manifestations of the disorder. If you look at the largest concentrations of autistic individuals in this country they are almost all in areas with large numbers of people employed by the high tech industries.

Yes! I forgot about that. That's definitely a huge part of it. It's like a form of evolution... almost.

[911medic]

I think that some people have a natural sensitivity to them. Many on the autistic spectrum have food sensitivities in one way or another, and when those foods are avoided, their symptoms become more manageable.

Similarly, I think that vaccines are what sets off a pre-existing condition into overdrive for some individuals.

You're right. My daughter's symptoms became worse after she started drinking Nestle's strawberry Quick(hand flapping and stemming). Once we figured out it was the Red Dye 40 in the Quick, and removed as much as we could from her diet, her symptoms improved. People would be amazed how many food products contain red dye 40.

My daughter's autism showed up shortly after her DPT vaccines.

[LunicaAshes]

Article I received via a mailing list:

Brought to you by AutismLink - http://autismlink.com

Father: Child's case shifts autism debate

By Jon S. Poling
For the Journal-Constitutio n
Published on: 04/11/08

http://www.ajc. com/opinion/ content/opinion/ stories/2008/ 04/11/polinged04 11.html

Autism in the U.S. has reached epidemic levels, at 1 in 150 children. Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention, has recently upgraded autism to "an urgent health threat." The most contentious issue of the autism debate is the link to routine childhood vaccines. My daughter's case, Hannah Poling v. U.S. Department of Health and Human Services, has changed this debate forever. Hannah has pointed us in a new and promising direction ?- the mitochondria.

On Nov. 9, 2007, HHS medical experts conceded through the Department of Justice that Hannah's autism was triggered by nine childhood vaccinations administered when she was 19 months of age. This concession was granted without any courtroom proceedings or expert testimony, effectively preventing any public hearing discussing what happened to Hannah and why. Contrary to some reports, the Special Masters, "judges" who preside over the "vaccine court," did not issue a decision.

Four months later, on March 6, with trepidation my wife, Terry, and I stepped forward to announce this news ?- providing hope and awareness to other families. The HHS expert documents that led to this concession and accompanying court documents remain sealed, though our family has already permitted release of Hannah's records to those representing the almost 5, 000 other autistic children awaiting their day in vaccine court.

Mitochondria key

To understand Hannah's case, it is important to understand mitochondria, which act like batteries in our cells to produce energy critical for normal function. Because the government's concession hinged on the presence of Hannah's underlying medical condition, mitochondrial dysfunction, some claim the decision is relevant to very few other children with autism. As a neurologist, scientist and father, I disagree.

Emerging evidence suggests that mitochondrial dysfunction may not be rare at all among children with autism. In the only population-based study of its kind, Portuguese researchers confirmed that at least 7.2 percent, and perhaps as many as 20 percent, of autistic children exhibit mitochondrial dysfunction. While we do not yet know a precise U.S. rate, 7.2 percent to 20 percent of children does not qualify as "rare." In fact, mitochondrial dysfunction may be the most common medical condition associated with autism.

Biological markers

Although unlikely, if the Portuguese studies are incorrect and mitochondrial dysfunction were found to be a rarity occurring in less than 1 percent of all autism, it would still impact up to 10,000 children (250,000 worldwide), based on current estimates that 1 million people in the U.S. (25 million worldwide) have autism. If, on the other hand, the research showing that 7.2 percent to 20 percent of children with autism have mitochondrial dysfunction is correct, then the implications are both staggering and urgent.

Autism researchers do not currently understand whether mitochondrial dysfunction causes autism or is simply a secondary biological marker. Autism clearly has many different causes, and should really be separated into multiple autism(s). I propose that we clearly identify and research the subpopulation term of "mitochondrial autism," which is distinguished by its unique biological, but not genetic, markers.

Based on what we know now, it is time to follow the prestigious Institute of Medicine 2004 report regarding autism and vaccines:

"Determining a specific cause (for autism) in the individual is impossible unless the etiology is known and there is a biological marker. Determining causality with population-based methods requires either a well-defined at-risk population or a large effect in the general population."

A paradigm shift

When the IOM report was published, mitochondrial dysfunction defining an autistic subpopulation was not firmly established. Today there is no doubt that mitochondrial dysfunction represents a distinct autism subpopulation biological marker. I urge health officials and the IOM to embrace their own report and pursue this breakthrough in the science of autism. National public health leaders, including those at CDC, must now recognize the paradigm shift caused by this biological marker with regard to their current position of dispelling a vaccine-autism link.

In light of the Hannah Poling concession, science must determine more precisely how large the mitochondrial autism subpopulation is: 1 percent, 7.2 percent, 20 percent?

Based on the 2004 IOM analysis, if the mitochondrial autism subpopulation is found to be relatively uncommon, then all conclusions from prior epidemiological studies refuting an autism-vaccination link must be discarded. New studies then need to be performed exclusively with the mitochondrial subpopulation. If mitochondrial autism turns out to be common, then we could re-analyze the data from prior studies to determine if these studies were powered sufficiently based on a predicted effect size. If not powered appropriately, the conclusion refuting an autism-vaccine link would again have to be rejected. These statistical concepts are basic.

The current vaccine schedule, co-sponsored by the CDC and the American Academy of Pediatrics, injures a small but significant minority of children, my daughter unfortunately being one of those victims. Every day, more parents and some pediatricians reject the current vaccine schedule. In an abundance of caution, meaningful reform must be performed urgently to prevent the re-emergence of serious diseases like polio or measles.

Need for research

As a neurologist, I have cared for those afflicted with SSPE (a rare but dreaded neurological complication of measles), paralytic polio and tetanus. If these serious vaccine-preventable diseases again become commonplace, the fault will rest solely on the shoulders of public health leaders and policymakers who have failed to heed the writing on the wall (scribbled by my 9-year old daughter).

The mitochondrial autism scenario that my daughter has so eloquently painted has the CDC and public health experts logically cornered. Denial and fear tactics won't close Pandora's Box. Whether we find that mitochondrial autism is rare or common, there is urgent research left to be done to fully understand the interrelationship of vaccines, autism and mitochondria.

Reform of the vaccine schedule will be an important part of the solution, whether vaccines play a major or minor role in autism. Our public health agencies and programs need a reconstruction plan. Day one of the reconstruction hopefully starts at the Vaccine Safety Advisory Committee's Working Group, to be held at HHS headquarters today in Washington.

> Dr. Jon S. Poling is a practicing neurologist in Athens and clinical assistant professor at the Medical College of Georgia.

[Kreig]

I don't need to read the thread to know what is posted here. In after 5 million people claiming to have Asperger's when they really don't. In after people blaming vaccines when vaccines aren't the problem.

Putting very young children in front of television sets for 10 hours a day warps their growing minds. That causes autism. The end.

[LunicaAshes]

I don't need to read the thread to know what is posted here. In after 5 million people claiming to have Asperger's when they really don't. In after people blaming vaccines when vaccines aren't the problem.

Putting very young children in front of television sets for 10 hours a day warps their growing minds. That causes autism. The end.

Um... thanks for making assumptions without reading. Yes, I do have AS. Yes, it is overdiangosed in some. No, I don't think vaccines cause ASDs.

I do believe TV contributes to the problem, but that's more with ADD and not other related conditions. With ASDs, the brain is structured very differently, and various genes are involved. If you read the thread, you'd see where I explained that.

It's related to family history of mood disorders, anxiety disorders, diabetes and auto-immune disorders. It's also possibly linked to having an older father at the time of impregnation.

Still what you thought this thread was about?

Please don't place me in a box. Thanks.

[AKR]

I don't need to read the thread to know what is posted here. In after 5 million people claiming to have Asperger's when they really don't. In after people blaming vaccines when vaccines aren't the problem.

Putting very young children in front of television sets for 10 hours a day warps their growing minds. That causes autism. The end.

good job dave man