Asperger Syndrome in Girls More Common than Once Thought

Asperger’s Syndrome (or Asperger Syndrome or AS) is a form of high functioning autism, characterized by obsessive interests and a difficulty in making friends. While commonly characterized as a “mild” form of autism, it is devastating in its own right. 

Starting in the 1960s, scientists theorized that boys inherited only one male X chromosome from their mothers, but girls inherited two (one from each parent). Thus, girls do not develop AS because the extra X chromosome from their fathers somehow “protects” them from it. This premise was never successfully proven.

Today, experts are realizing that the frequency of AS in girls is much higher than previously believed. The male-to-female ratio of Asperger’s is thought to be 3-to-1, but Dr. Tony Attwood, the world’s foremost authority on Asperger’s Syndrome, maintains that there is actually much more parity between the sexes in incidence. 

"Aspie" boys often appear like “little professors” who are experts in one subject, but Aspie girls are more like “little philosophers.” They often appear odd or aloof or seem to live in fantasy worlds. Typically in elementary school, they cling to a single best friend and the loss of that friend is very traumatic. 

All Aspie children have problems navigating the social world. However, when boys get frustrated, they tend to act out in aggressive ways that garner adult attention. Aspie girls tend to internalize their suffering, appearing shy and passive. 

Aspie girls have a facility to camouflage their social confusion and successfully mimic social behaviors. Since they do not understand how to process and express emotions in a normal way, their faces often develop a “mask-like” quality. With a permanent smile on their faces, they constantly attempt to please others. 

Tragically, these “good girls” rarely get the help they need and this results in low self-esteem, depression (often clinical), vulnerability to relationship predators or living in abusive relationships, excessive weight loss or gain or selective mutism, among other things.

Girls can be identified as having Asperger’s Syndrome through their special interests and unique behaviors. The diagnosis is a point of liberation for them to understand why they experience the world as they do and discover they are not alone.

I have to admit, this description of Asperger’s in girls rang like bell in my own life, right down to my best friend moving in fourth grade being as traumatic as a death. Having high functioning sons, I see a lot of myself in them and it inspired me to take the autism test for adults featured on our website. I scored a “35," the typical score for someone with Asperger’s. 

While it’s too late to undo all the hardships I bore as an undiagnosed girl with Asperger’s, it does bring me new clarity and peace of mind in looking back on my life. Hopefully, with new information, more girls will receive the help they need and avoid the perils of camouflaging their pain all too well.

To access the Autism Spectrum Quotient Quiz for adults, visit http://www.autismkey.com/autism-spectrum-quotient.php

Autism Awareness Month Still a Work in Progress

Leading up to this year’s Autism Awareness Month, I began with real hope in my heart. I knew that a trailer would be released on April 1st for a new documentary film entitled "The United States of Autism" ( http://usofautism.com ) that my family and I were featured in and we were also celebrating World Autism Awareness Day again on April 2nd. I truly thought this was a year of action and even took it upon myself to personally call 250 social service and corporate entities to find out if any of them had plans for the month. My hope quickly turned to disappointment.

Of those 250 organizations, not one had plans to do anything for the public, their employees or those dealing with autism. No education, activities or action plans were in place. In fairness, the feedback was a little skewed because I omitted a few companies that have been visible supporters of Autism Speaks for a few years ( Toys R US and Lindt Chocolate, to name a few). Additionally, The White House had refused to join in on the light it up blue campaign and we were able to bring attention to the administration’s lack of follow through on promises to appoint an Autism Czar this term.

One bright spot this year was the daily messaging and replication of news on social media sites. Countless tweets have been sent this month on the topic of autism awareness and action by myself and others, but I wish more would get involved. The world is watching. 

A mother has taken it upon herself to personally tweet every celebrity, asking them to retweet basic statistics and facts about autism. In about a two week period, about 25 have responded. However, a retweet alone is not enough and more celebrities need to do more by stepping up and getting involved.

I have to commend Autism Speaks for turning up the spotlight on a few television shows. I also admire the series Holly Robinson Peete has done for The Talk CBS, as well as Robert MacNeil for coming out of retirement to bring attention to his grandson and family. Overall though, the voices of parents and those in need are still not loud enough and awareness without movement to action only highlights the negligence on our part.

In an ideal world, the walls between the "have" and "have-nots" get knocked down. The unfortunate reality is that there are dramatic differences in availability of services for families based on higher incomes and demographics. I think this is socially, morally and legally wrong. This must change. We have seen enough buildings lit up blue, walks, runs, safety fairs, statistics and stock market bell ringings. It’s now time that we cross the street and ask our neighbors what they need. 

Recently, I heard and tweeted the following quote: “One person cannot help everyone, but everyone can help one.”

I initially heard this on a local Christian radio station broadcast in the Chicago area while introducing a missions trip to help desperate children in Peru this summer. Juxtaposed against the backdrop of Autism Awareness Month, I was frustrated that very little had been said about autism. 

Many times, autism is so complex and so overwhelming, it paralyzes people to the point of inaction. It is our job to simplify it so people respond. 

A good Samaritan recently mowed my yard and others have helped with buying and cooking my son Tanner’s special GFCF diet food. Simple moves and acts of kindness such as these could save a life. Respite is only a dream for many families. There is much more need than there are those willing to help.

This year, do your best to get involved and turn the awareness of April into action all year round. 

God Bless. 

Fire Safety for Children on the Autism Spectrum

istockphoto.com/jonlin

Lately, much attention has been given to the problems of autism wandering and the risky interaction between autistic individuals and the police. A less discussed and equally important issue that combines elements of the other two is fire safety for children on the autism spectrum.

Children with autism (CWA) are at a higher risk in a situation involving a fire because of their propensity to retreat to a favorite hiding place when feeling threatened. Their fear of an approaching firefighter due to their mask and equipment can also cause them to flee from help. Even those who have successfully escaped a burning building have died re-entering attempting to find a prized possession. Once outside, their risk of flight is elevated by the shock of the scenario and the sensory overload of emergency vehicles, lights, radios and police.

It’s essential to develop a plan of escape for your home and go over it with your children. This includes picking a gathering spot outside the home. 

The Autism Society of America (ASA) offers a helpful guide to fire safety for individuals with autism at : http://www.asmonline.org/programs_law_fire.asp  

Their guide includes the following suggestions:

  • Be sure that a smoke detector is placed in or near the CWA’s room, as well as on all levels of the home. Test those smoke detectors frequently to make sure they are in working order.
  • Teach your child the basic fire safety tips like stop, drop and roll and touching a door before opening. 
  • It is imperative that one family member be specifically assigned the responsibility to get that person with ASD out of the home and to a place of safety.
  • It is critically important that this person also stays with their loved one to ensure that they do not re enter the home to retrieve a favorite object or attempt to flee the situation.
  • If your loved one is non-verbal, prepare a laminated card containing basic information about your child (including any allergies to medication) in case of a medical emergency.
  • Be proactive by providing your local fire department with as much information as possible about your loved one. This includes advising them of the location of the loved one’s room and other places they may flee in an emergency situation.
  • Visit the firehouse on multiple occasions, so that your loved one can see a fire-fighter with all of their protective and fire-fighting gear, including the oxygen masks, axes and hoses, so that they can grow accustomed to them. Also, acquaint them with medical equipment, such as stethoscopes, blood pressure cuffs, oxygen masks and stretchers, so that they might be prepared in the event of a medical emergency.

When my sons were preschoolers, they became fascinated by a picture book about firefighters. This proved to be a great springboard to visiting the local firehouse, where they received a grand tour and got to sit in the fire truck. They went home with coloring books and badges and we played “stop, drop and roll," interspersed with “stay low and go” games on the lawn (stay low and go involves crawling to prevent smoke inhalation). Making a game of it reinforced the ideas without creating anxiety about being in an actual fire. I felt reassured that my sons were comfortable with firefighters and basic safety and we were as ready as we would ever be.

I was reminded of these times as just this month, a heartbreaking incident occurred in Arizona involving a 12-year-old boy with autism who died in a fire at his family’s mobile home after he became confused and ran back into the house. He has been described as a hero for initially notifying his family of the fire when it first broke out. Details of the tragic story are included in the video below.

A house fire is the last thing anyone ever expects, but being prepared as a family and taking extra precautions will go a long way in staying safe if such an incident should occur.



James Durbin Covers Muse on American Idol

Week after week, American Idol contestants are challenged by judges Randy Jackson, Jennifer Lopez and Steven Tyler to step it up and take chances. James Durbin did just that this week, with a cover of Muse’s "Uprising." Along with an accompanying marching band of drummers, Durbin executed what was arguably the best performance of the night.

After the song, the judges heaped praise on James for his originality and predicted he would be the strongest performance of the night, despite the fact that he was the only the second singer to perform.

Tomorrow, Durbin will learn whether or not he will advance to the American Idol top 6. If so, he will be even closer to competing in the Idol finale, which takes place in late May. However, the competition this year is extremely fierce and it will take the support of all of his fans and supporters as well as new ones if he is eventually to be crowned the next American Idol.

Durbin, who has been diagnosed with both Tourette’s and Asperger’s Syndrome (a high functioning form of autism), has been a frontrunner since the season began. His vocal range, along with dynamic performances have won over fans week after week. Additionally, when his backstory emerged, he garnered much support from the autism, Tourette’s and special needs communities. His die-hard fans are affectionately known as "Durbinators."

Doctor Misconduct Further Clouds the Truth About Autism

I have said for many years that contradictory studies or even the studies that are simply false, will always have supporters as long as the results are what those people want to hear.

This is never more evident than when doctors behind those studies are found guilty or accused of doing something wrong and people continue to support them, even to the point of fabricating conspiracy theories to justify their actions.

I bring this up now as new cases have hit the newswires surrounding two prominent doctors well known within the autism community.

Denmark scientist Poul Thorsen has just been indicted for fraud for allegedly embezzling a $1 million grant for autism research from the Centers for Disease Control (CDC). Thorsen was one of the doctors involved in a well known study in Denmark that compared autism rates in children across the entire country vaccinated with the MMR vaccine versus those that did not receive the MMR. His results showed that there was no link between the vaccine and autism.

Another well-known doctor that has recently come under attack is Dr. Paul Offit, the co-founder of the rotavirus vaccine. Offit has been very outspoken in recent years in defending the safety of vaccines, as well as the current vaccination schedule. Just this week, Offit was accused by the OC Register of making unsubstantiated and/or false statements in connection with a 2008 story when responding to a CBS News report from that same year.

The reason I bring up these two stories is because they have heavily reverberated throughout the anti- and pro-vaccine communities, causing a lot of suspicion and outrage.

If the allegations in these cases are in fact true, what else are these doctors capable of? Does this also cast doubt on their studies’ findings or other past claims as well?

Perhaps your conclusions about these stories greatly depend on what you thought of these doctors and their conclusions in the first place. If you didn’t believe them before, then these stories will only further solidify your skepticism and doubt.

Dr. Andrew Wakefield, another doctor involved in a recent controversy, was accused of acting fraudulently and was allegedly paid $800,000 by personal injury lawyers to produce certain results in a 1998 study. Wakefield’s conduct ultimately resulted in a retraction of his findings in the Lancet medical journal and the loss of his medical license.

However, none of his purported actions swayed his supporters in the slightest and there are now murmurings on the Internet about how Wakefield was in a position to alter information, whereas Thorsen wasn’t. Others claim that Offit is in the pocket of pharmaceutical companies and that Wakefield is their target — the stories and conspiracy theories go on and on.

The point is that these stories simply prove one thing: doctors are fallible and therefore can often be just as unreliable as the average person.

Unfortunately, however, parents and those living with autism are the ones who ultimately suffer from all of this confusion and are left trying to make sense of the contradictory information.

What you’ll often find is that the average person is most likely to listen to the results they already believed to be true in the first place. They believed it to the point where they felt they knew it as though it were fact. A study or a doctor saying it simply confirms it. And once that confirmation is in place, those people will protect their convictions, even against overwhelming evidence to the contrary.

Which studies are we supposed to believe then? The one with doctor A that allegedly steals? The one with doctor B that allegedly lies? Or the one with doctor C that allegedly makes it all up?

I don’t have the answers and I won’t believe anyone who says they do. Because I have to remember that what I want to hear is coming from a fallible person that is susceptible to the same mistakes, temptations, errors and faults as everybody else.

Another Child with Autism Wanders and Drowns

Blake Murrell

In what has seemingly become a regular occurrence, another child has tragically died in a wandering and drowning-related incident, this time near Tulsa, Oklahoma. 

Four-year-old Blake Murrell, who had autism and was non-verbal, was found deceased in a duck pond yesterday afternoon just a short distance from his home. Murrell was reported missing at around 11:30 a.m. by his mother and was found and recovered about 4 hours later.

As we recently reported, autism wandering deaths have become so prevalent in recent years, some of the largest autism organizations in the country have teamed up to form AWAARE, a group that focuses on preventing wandering incidents and wandering-related deaths through education, resources and awareness.

Children with autism are prone to wandering and are often attracted to water due to its texture. A child with autism can disappear out of sight in a matter of seconds, so it’s very important that parents, caregivers and educators be extremely vigilant on this issue.

To obtain a very helpful wandering brochure from AWAARE, visit: http://www.awaare.org/docs/wanderingbrochure.pdf  (Adobe Reader Required).

This story is a parent’s worst nightmare and our thoughts and prayers are with the family during this difficult time.

Siblings of Children with Autism Carry Special Burdens

When a child has autism, most of the family’s energy and resources go towards that child. Siblings carry their own special burdens as they experience all the hardships and stress attendant with autism, yet may feel they get less of their parents’ attention. More is expected of them than their sibling and they can experience this to be elementally unfair. They are party to people’s hostile reactions when their brother or sister causes a scene in public and may resent the negative attention and even feel embarrassed or pained.

Often, the neurotypical child is the person in the family better able to calm their sibling who is melting down or help them navigate their world. Although both my twins are on the autism spectrum, one has less severe problems than the other and I habitually looked to him for help with his brother. From a very tender age, it was obvious that the twin connection superseded the parent connection. I considered it a blessing and tried very hard to keep both sons’ needs in balance, but truthfully, my more stable son was rendered a “little adult,” despite his own challenges. He was the eye of every storm and I looked to him often. 

Parents should give their weight-bearing child the chance to express what it’s like for them to have a brother or sister with autism. These siblings often hide their concerns and become the overachiever or the “easy” child who harbors feelings of invisibility within the family. There is a danger that just like other caregivers who sacrifice too much, they may be giving up their childhood or missing opportunities to just be a kid. Making special one-to-one time expressly for your neurotypical child goes a long way towards letting them know that they are not losing out to the more needy brother or sister. 

Siblings have a huge influence on children with autism. In fact, a groundbreaking study published in the latest edition of the Journal of Child Psychology and Psychiatry suggests that the influence of siblings actually determines the social behavior of children with autism. Children with autism who have younger siblings demonstrate a significant advance between the ages of three-to-five years in “theory of mind,” or the ability to perceive that everyone has their own intentions, beliefs, desires and emotions. Normally, even the highest-functioning child does not score well in theory of mind before age thirteen, yet these very young children excelled. 

Unsurprisingly, siblings of children with autism are often deeply compassionate and wise beyond their years. 

This month as a part of Autism Awareness Month, there was a school sponsored event where siblings explained autism from their perspective to their classmates, serving as both ambassadors and liaisons between the autistic and neurotypical worlds.

Clearly, siblings of children on the autism spectrum have a special role to play within the family and community. As such, extra care needs to be taken to honor and support them. Towards that end, many organizations have started groups expressly for siblings of children with autism. Facebook now has a page just for siblings-of-Autistic-Children:   http://www.facebook.com/pages/Siblings-of-Autistic-Children/179729994860 

And here is a national organization to connect siblings of children with autism with support:  http://www.siblingsupport.org

Caregiver Accused of Molesting Young Boy with Autism

Jeremy Shawn Stockton - Courtesy: LAPD

In what appears to be an alarming and disturbing trend, another incident has been reported involving sexual misconduct between a caregiver and a child with autism. This time, a case has emerged from the Los Angeles area, where an in-home caregiver has been arrested and charged with 11 felony counts of committing a lewd act upon a child and three felony counts of oral copulation of a person under 14.

Twenty-nine year old Jeremy Stockton, a caregiver to special needs children, was taken into custody last week and is currently in jail on a $1.4 million bond. Stockton is accused of committing the alleged crimes on a young boy with autism from March 1, 2008 to March 26, 2011. He was arrested when the youngster came forward with allegations of molestation.

This case is sickening and mirrors an incident we reported on several months ago involving a special needs caregiver in South Carolina. Much like the current story, police suspect additional victims in that case as well.

There needs to be greater accountability in these types of incidents and authorities need to identify how this type of behavior (if proven true) was able to go on for such a long period of time and what type of background and screening process was implemented by Wellspring, the local agency that employed Stockton.

This is also a perfect example of the need for parents to be extra-vigilant about who comes in contact with their children on a regular basis. Children with autism, especially those who are non-verbal, are ideal targets for sexual predators because of their inability to properly communicate or report incidents of abuse. As such, parents need to be extremely sensitive to who they are entrusting their children to.

Jeremy Stockton has pleaded not guilty and is due back on court on May 3 to determine if there is enough evidence for him to stand trial. We will provide updates on this case, as they emerge.

Bill Seeks to Eliminate Restraint and Seclusion in Schools

On April 6, 2011, U.S. Rep. George Miller (D-CA) introduced The Keeping All Students Safe Act, legislation designed to prevent school children from being abused as a result of inappropriate uses of restraint and seclusion. Government investigations have found that these abusive practices are used disproportionately against children with disabilities such as autism and most often at the hands of inadequately trained staff. The legislation first passed the House a year ago with bipartisan support, yet never became law.

Since the bill failed in March 2010, dozens of instances of maltreatment have been reported across the nation. Children have been tied up with duct tape, sat on by untrained staff and locked in rooms for hours at a time – abuses tantamount to torture. 

The Keeping All Students Safe Act would introduce minimum safety standards to prevent abusive restraint and seclusion in schools across the country. Similar protections already exist in medical and community based facilities, but like corporal punishment, public schools are the last bastion of unrestricted child abuse. After two years, states will be required to have their own policies in place to meet new minimum standards, which would apply to all schools and preschools receiving federal education support. 

The Government Accountability Office (GAO) found that abusive restraint and seclusion were widespread in schools across the country. Typically inflicted by untrained personnel, these practices were largely used as a routine disciplinary tactic, rather than in response to an emergency.

Seclusion in this context means the act of involuntarily confining students in areas by themselves. Restraint is a restriction of an individual’s freedom of movement. Restraint can and has become fatal when it blocks air to the lungs. Ropes, duct tape, chairs with straps and bungee cords have been used to retrain or isolate young children in some of the cases examined.

Only twenty-three states have meaningful restraint and seclusion laws or regulations. Currently, only thirteen states ban the use of restraints that impede breathing, only ten states ban mechanical restraint and ten states ban chemical restraints.

Specifically, the legislation would:

• Allow physical restraint or locked seclusion only when there is imminent danger of injury, and only when imposed by trained staff;
• Prohibit the use of any mechanical restraint, such as strapping children to chairs, misusing therapeutic equipment to punish students, or duct-taping parts of their bodies; 
• Prohibit chemical restraint, meaning medications used to control behavior that are not administered consistent with a physician’s prescription;
• Prohibit any restraint that restricts breathing; 
• Prohibit aversive behavioral interventions that compromise health and safety, such as denying students water, food, or clothing, denying access to toilet facilities, or using noxious stimuli such as pepper spray in order to control behavior; 
• Prohibit schools from including restraint or seclusion as planned interventions in student’s education plans, including Individualized Education Programs (IEPs); and 
• Require schools to notify parents after incidents when restraint or seclusion was used. 

It’s remarkable that in 2011, this legislation is even necessary. The reality of just how barbaric our school systems actually are is utterly shocking. One of my own children suffered such abominations and it scarred him for life. It rendered him anti-authoritarian, a logical consequence, but one not conducive to attending school. It pains me because I know why he feels the way he does, yet I want him to be able to access education and have a range of choices about his future. 

Attention to the issues of corporal punishment and isolation and restraint are long overdue in a country that considers itself a leader among civilized nations. As the number of cases of autism continue to explode, the heat is on to develop best practices for educating children on the spectrum.

Martial Arts Proven Beneficial for Individuals with Autism

istockphoto.com/Nikada

A recent and growing trend that has provided many benefits for children on the autism spectrum involves their engagement in karate and other martial arts. 

A 2010 research project conducted by the University of Wisconsin physical therapy department confirmed what parents were already reporting — in the course of learning martial arts, children with autism essentially came out of their shells and grew more socially assertive and cooperative. They exhibited better balance and motor coordination, eye contact improved and play skills were further developed. Greater self-esteem was also reported, with the added bonus of these kids being able to defend themselves, if need be.

Karate and martial arts assist kids on the autism spectrum with the ability to concentrate and focus their attention in a consistent and highly structured environment. Additionally, parents find that new skills carry over into home and at school. The release of energy in a safe and ritualized environment can bring a child to a new sense of calm. Friendships are formed around a shared activity and that sense of belonging can be the greatest reward of all.

If contemplating martial arts for your child, it’s always good to consult with his or her doctor prior to beginning any physical training. Observe the class before committing your child to it. It should be small and solely for children with autism, at least initially. Higher functioning children may be able to integrate into regular classes immediately. Confer with the instructor about your child’s needs and make sure you feel you can successfully partner with them.

Once your child is underway, have them practice at home in a no pressure environment and offer encouragement and reinforcement for the moves they have already learned. A demonstration for siblings or other relatives will also go a long way in building confidence and self-esteem.

Martial arts offers therapeutic rewards and parents will enjoy the fact that their child can participate in activities that other kids take for granted. And with summer fast approaching, it just may be the perfect activity to consider.

 
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Visitors who desire to apply or use any information listed herein are urged to consult with licensed healthcare professionals first. All information is deemed reliable but its accuracy can't be guaranteed.

Did You Know?

  • * In 1970, Autism affected 1 out of 10,000 children
  • * Autism now affects 1 out of 88 children
  • * Autism affects 1 in 54 boys
  • * 1.7 million Americans have some form of autism
  • * 4 out of 5 autistic children are boys

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