Despite greater awareness and a better understanding of the disorder, autism
rates continue to climb at an alarming rate, with more parents than ever before receiving the devastating news of an autism diagnosis.
However, while the maze of a loved one’s diagnosis can be quite overwhelming, there is some
potentially great news. As the first wave of children from the initial autism
epidemic transition to adulthood, we are seeing many of them leading very functional
and happy lives. Autism is a lifelong condition, insofar as affecting a person’s
need for support, special accommodations or assisted living (to lesser or greater
extents). However, things such as college, a career, marriage and family are
proven to be very much attainable.
Autism will be typically first diagnosed according to code 299.00 of the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV),
which falls under the category of "Autistic Disorder." The diagnosis will
then go on to list specific areas of delays or disturbances and there is typically
no stated degree such as "mild" or "severe" in the initial diagnosis of
an autism spectrum disorder.
In most cases, the level of severity depends on what age a diagnosis occurs, how much
accommodating therapy will be received and the amount of growth an individual will show with given therapies.
Low functioning autism is determined by an IQ (Intelligence Quotient) of 80 or below. This number is very low and is typified as those needing complete assistance in almost every area.
With that being said, many cases that appear to be stereotypical, classic or
severe, turn around in a relatively short period of time.
In order for this to take place, a tremendous amount of work must be carried out in the home or
natural environment, which includes intensive applied behavior analysis (ABA)
therapy. My four-and-a-half-year-old son was a stereotypical, wall-staring, head-banging, speechless child less than 2 years ago. Today, he is a happy, functioning child with
only a severe speech impairment, inability to transition well and some social
Conversely, what often appears to be a "mild" case of autism can
quickly regress into something much worse without the proper therapy and ongoing treatment, both in a therapeutic environment and
There are no "middle functioning" children and in actuality, there is a very small percentage of
"low functioning" children, with the greatest proportion having the ability to be
In some cases, autism can be misdiagnosed as Landau-Kleffner Disease, Rett’s Syndrome, Heller’s Disease,
Hyperlexia or Tourette’s Syndrome. Regardless, all neurologically-based delays and deficiencies are best treated as
early as possible with behavior modification and accommodating therapies holding the greatest weight.
Not long ago, roughly 50% of all children with autism spectrum disorders were thought to be low functioning. As was pointed out to me today, Temple Grandin was thought to be mentally retarded and was earmarked for institutionalization. Now, Dr. Grandin is an acclaimed writer and speaker on the subject of ASD and
animal behaviors. She also has attained her PhD and teaches at Colorado State University.
It’s a good thing her mom ignored the doctor’s recommendations.
With the early screening and diagnosing capabilities now currently available, the percentage of
those with "low functioning" autism should be less than 15% if the correct behavioral therapies are
administered at the appropriate time.
This should provide comfort to the wave of parents who have recently received
their child’s autism diagnosis, as well as those who are yet to come.
In the end, the child diagnosed with autism today is likely to be joining the ranks of some of the most
brilliant, creative and talented minds our society has ever produced.
According to her blog, an incident occurred this past New Year’s Eve while on
a trip to Orlando, Florida when her and her family were dining at the ABC
Commissary restaurant in Hollywood Studios (part of the Walt Disney World
Resort). Broadfoot claims that while eating
at the restaurant, a group of "aggressive, rude and possibly drunk teenagers"
began blowing noisemakers directly at her 4-year-old child with autism, causing
him to repeatedly hit himself in the head. Apparently, the teens found this
reaction amusing and continued their actions to the point where they
"targeted" her child. When the boy’s uncle asked them to stop, stating
that they were "torturing an autistic boy," one of the teens
responded, "That’s not my problem." Broadfoot said
the incident was a classic case of bullying.
When a manager was called over to intervene, she too was unsuccessful at getting
the rowdy teens to stop and then stated there was nothing else she could do.
There are a couple of troubling elements to this story. The first involves the
actual incident itself and the other involves Disney’s response once they
learned of the ordeal.
Assuming everything happened as Broadfoot claims, the restaurant manager should have
immediately escalated the incident to security when the teens were defiant of
the requests to stop their actions. However, it appears as if the manager didn’t want to be inconvenienced by
escalating the situation and that is totally unacceptable.
But the most concerning part of this incident came after it occurred, when
Broadfoot communicated with a Disney guest communications service
representative through telephone, then email. Upon learning the details of her
story, the Disney rep emailed her the following:
"…I am very sorry for the disappointment you experienced
during your family’s New Year’s Eve celebration at Disney’s Hollywood Studios
I wanted to personally assure you that your feedback has been considered
taken seriously [sic]. The safety and well-being of our guests are of the utmost
importance to us in all aspects of our operation. Our Cast Members are
instructed to assist Guests requiring assistance and their families to our
First Aid stations located in each of our four theme parks. These locations
are established areas where your family can seek comfort during experiences
like the one you encountered from the actions of other Guests…."
So if a child with special needs (or anyone else for that
matter) is being harassed by other guests at Disney World, it is the family’s responsibility
to flee to a first aid station for "comfort?"
Even if Broadfoot had been instructed by the restaurant manager to do so, the
family would’ve had to uproot themselves in the middle of a meal — all
because they were unfortunate enough to sit next to some obnoxious teens.
happened to the concept of security?
In response to the Disney email, Broadfoot followed up on her blog with the following:
"The idea that we should have to take our dinner to the first aid station,
one of the "safe havens," in order to ensure our children weren’t
bullied, is nothing short of ridiculous."
Disney World has always been a pleasant place for our family to
visit. The parks do an excellent job at accommodating our son with autism and
ensuring we have a great time.
However, it appears from this incident that Disney needs to review how they
handle these types of incidents in future, both when they occur and after they’ve happened.
The burden should not be placed on the guests (particularly those of special
needs children) to seek a first aid station when they are being harassed or
Many children with autism endure bullying on a regular basis and we need to do a
much better job, regardless of where that may be, to ensure our kids our
protected by those who get amusement by preying upon the weak and vulnerable.
The New York Daily News reports that Brandon Strong, a ten-year-old student with autism and ADHD, has been systematically punished at
a New York charter school for exhibiting symptoms of his conditions. He has
reportedly been detained during lunch and after school for behavior that
includes talking to himself, failing to look teachers in the eye and fidgeting.
Strong was once a successfully mainstreamed student, but is now having problems
sleeping and throwing fits when it’s time to go to school.
Meetings with school officials have brought no resolution and they have maintained that
the parents are exaggerating the issues and not on board with the school’s
methods of preparing their son for college.
My two sons, who both have high functioning autism, have been in similar scenarios
all of their lives. A few years ago, I was told by a teacher that my one son
"would never be successful in his class or any other" because he was unable to take handwritten notes,
wouldn’t talk when called upon and didn’t make eye contact with the teacher.
Outraged, I transferred him to another school, where his new teacher recognized his charm and potential. She made
it a point to show him great respect in front of all her students and they ended
up following her lead. My son eventually ended up receiving the top citizenship award at his grade school graduation, thanks
in large part to his caring and compassionate teacher.
Although it sometimes can be effective, changing schools in the middle of the year or during a critical time in a student’s life is not the answer. It
is the school that must conform to the child, not the other way around. Accommodations for students with disabilities is the law, but the reality is that classroom
policies can be shockingly regressive. Many teachers and administrators just don’t understand autism or the laws surrounding it.
Often when problems arise with a teacher, administrators take a defensive
posture instead of working in conjunction with parents to create a program that works for
As for young Brandon Strong, toys made specifically for fidgeting exist and can
be handled without causing a distraction. Specialized cushions allow for undetectable squirming. Eye contact is to be encouraged, but
failure to do so should never be met with punishment. Additionally, the teacher
should let it be known to the class that they are to be supportive of everyone, and if Brandon needs to talk to himself sometimes, then
Getting a student with autism ready for college does not entail forcing them to
behave like a neurotypical person. It means giving them a level playing field and a safe
environment to develop intellectual and social skills.
Time and time again, private and public schools fall short in providing the quality of education mandated by the
law and parents are forced to fight for the rights of their child. If the
situation leads to an adversarial battle, it is best to bring in outside help from an autism advocacy organization.
Many times, teachers will view special needs students as a nuisance and will do
whatever they can to force a child out of their class. But what our schools need are
more teachers who genuinely care about all of their students, regardless
of the issues they may have.
In the end, the most successful outcomes occur when all parties sit down together and brainstorm about what
is best for the student and then implement that plan.
With the meteoric rise of social media Web sites such as Facebook and
Twitter, many individuals and groups now have the opportunity to reach large
numbers of people to promote awareness, advocacy and attention for their causes.
Such is the case with autism, where a dramatic spike in prevalence over the last
10 years has prompted many people to the take to the Internet to help, support
and encourage others through the popular online social networks.
Stuart Duncan is the father of a five-year-old child with autism and one such
example of how Twitter can be effectively used for advocacy efforts. Operating
under the handle @autismfather, Duncan has amassed nearly 2,000 followers in the
last year and has since been interviewed by CNN and recently helped raise
thousands of dollars when Samsung offered $5 for every tweet that contained the
Duncan has a loyal online following and is currently planning to use Twitter and
other Web sites as ways to implement an "upgrade" to Autism Awareness
Day this coming April 2nd.
"My goals are quite lofty," he said. "The world is already aware
of autism, but doesn’t truly know what it is. We feel the message of awareness
is not enough, so the plan is to implement something known as Autism
Understanding and Acceptance."
Duncan says there are already twenty charities and companies on board to help
support the cause, with more to follow.
Duncan’s story is just one example that shows how the Internet has leveled
the playing field for normal, everyday people. In year’s past, awareness efforts
were typically reserved for the large multi-million dollar organizations such as
the American Red Cross or the Muscular Dystrophy Association, requiring lengthy
telethons and big budgets to raise funding and awareness. However, the Internet,
via Facebook and Twitter, has completely changed the landscape of how people are
reaching out to others.
Zoey Roberts is a British Columbia resident on the autism spectrum who has
taken to Facebook over the last 3 years to promote autism awareness and also
give others insight into her Asperger’s Syndrome. With social situations a
challenge, Roberts is able to use Facebook as a tool to connect with others to
both receive and offer support.
Roberts has over 3,000 friends (Facebook.com/AutismRights) and runs multiple
Facebook groups that allow her to share her experiences and unique perspectives.
"Through my online advocacy, I’m able to accomplish not only autism awareness,
but also give others the opportunity to see things from the point of view from someone on the
autism spectrum," said Roberts. "Using Facebook, my goal is to
eventually create autism awareness, peace, unity and hopefully acceptance as
With more than 500 million active users on Facebook and over 200 million Twitter
users, social media has become the vehicle of choice to promote causes and
awareness. As recent events in Egypt and the Middle East have demonstrated, a
voice that was once drowned out can now be heard loud and clear through the use
of these types of sites.
And with autism rates continuing to climb at exponential levels, we can expect
to see many more emerging voices on behalf of autism in the near future.
As the 135th Westminster Kennel Club Dog Show wraps up in New York City, it
has been difficult not to reminisce the many, many hours spent with our son
watching dog show reruns on Animal Planet over the years. His affinity for
animals (dogs in particular), has always been very strong and may have been
partially explained by a USA
Today article published this week, discussing the benefits of dogs for children
The article cited several studies proving the positive benefits of canines, including
the results of research conducted in 2010 that concluded the following:
"The study measured the salivary levels of cortisol, a stress hormone, in 42 children with autism at three different times: before and during the introduction of a service dog to their family, and after a short period during which the dog was removed from their
family … The researchers concluded ‘that the introduction of service dogs translated into reducing cortisol levels
and the number of disruptive behavioral incidents in children with ASD.’"
These results come as no surprise. Animals have always been fascinating to
our child. Not soon after he was diagnosed with autism, we soon found ourselves
taking almost weekly visits to the local zoo, where he was captivated by the
many animals on display. It was during these times, when his condition seemed to
vanish for the several hours we were there.
Over the years, his love for animals only grew stronger and eventually, he could
recognize and identify even the most obscure of animals. His library soon became
stocked with books on mammals, sea creatures, dinosaurs and of course, dogs. In
retrospect, it was during these years when the healing had begun.
Dogs are recommended for children with autism not just for companionship, but as
stated earlier, the potential therapeutic benefits as well.
4 Paws for Ability is an Ohio-based organization that specializes in dog
placements for those with disabilities and focuses heavily on those with autism.
Their tagline is "providing canine miracles for people with disabilities
worldwide." The group has been responsible for placing over 500 dogs around
the world and offers canines for disorders ranging from seizures, deafness,
mobility issues and autism. Families in need of a service dog can apply
directly online at their Web site: http://www.4pawsforability.org
If a child has been diagnosed with moderate-to-high function autism and a
service dog is not needed, a trip to the local animal shelter may go a long way
in providing immeasurable benefits. However, parents need to remember that dog
ownership is a big responsibility and should not be taken lightly. In addition,
a pet allergy test should be considered prior to a dog entering the home to
avoid heartbreak down the road.
Grandin has proven, individuals with autism are often able to connect with
animals in very deep and meaningful ways. In particular, dogs can teach a child
unconditional love, responsibility, compassion and provide unparalleled
companionship that can potentially change the course of their lives.
Jenny McCarthy and Her Son, Evan (Courtesy: Teach2Talk)
It is estimated that between 25%-30% of those diagnosed with an autism spectrum disorder will suffer at least one seizure before the onset of puberty.
Varying in degree and intensity, these incidents can be incredibly traumatic for
parents to witness, particularly if it’s a first-time episode.
“Ugh. Evan had a seizure. We r in the ER. He’s doing better. Just laying next To him. Could use prayers again right about now.“
unknown how severe the seizure was, but McCarthy’s son, Evan, was diagnosed with
autism in 2005 and has a history of them, even requiring
medication to control them at one time. It’s unclear if he is currently taking any anti-seizure
For many parents of children with autism, seizures often manifest during a
sickness such as the flu, common cold or stomach virus, but they can also strike at
any time and without warning.
When our son had his first seizure, it was a very traumatic experience as I
witnessed him violently convulsing for over two minutes, all while he turned
blue in the face. With a lack of awareness about what was happening, I
felt completely helpless about what to do at the time.
If your child or loved one is unfortunate enough to suffer from a seizure,
here are some important things to keep in mind:
• Remove any nearby objects that will cause bodily injury
• Protect the person’s head with a pillow, cushion, towel, or any other soft object
• Carefully and gently place the person on his or her side
• Do not attempt to move the victim to another location
• Do not put anything is the person’s mouth, including any water or fluids while the seizure is still occurring
• Most importantly, stay calm. Witnessing a seizure can be extremely frightening and traumatic, especially when it happens to a loved
Our thoughts and prayers are with Ms. McCarthy and her family, and we wish Evan a
full and speedy recovery.
The Windsor Star reports a great idea coming from our neighbors to the north
in having local police departments create a voluntary online registry of citizens with autism in their community.
A successful pilot project exists in Ottawa, where last year, police teamed with the their local autism chapter to give officers quick access to critical information in
the event of an emergency.
Michelle Helou, a Windsor mother of a son with autism, is now taking it upon herself to see the
registry program expanded to her city. Non-verbal and prone to wandering, she fears what would happen
to her son if he encountered police and was unable to respond to their questions or became aggressive from sudden movements. Ever fearful of him becoming lost, she
also wants to be certain he could be brought home safely by police.
Recent events certainly give merit to her concerns. The tragic death of a man
with autism shot to death in Los Angeles and the savage beating a jaywalking
teen with autism in Seattle highlight police departments´ lack of preparedness in dealing people with autism in their
A registry accessible from a squad car can provide police with a variety of
valuable information, including contact information, nicknames, physical descriptions,
a person’s means of communication, known routines, inclinations for wandering and
favorite attractions. The data might also recommend the best ways to approach
a person, their favorite topics of conversation or in the case of a young child, favorite toys.
At a time when police officers receive little or no training in dealing with autism, it could also reinforce in the moment what
not to do, such as becoming suspicious and hostile if a person mimics speech or refuses to make eye contact, or
won’t talk at all. The reminder to turn off bright lights, speak in a calm voice, maintain physical
distance and not mistake autism symptoms for insubordination could go a long way towards averting
a disastrous encounter with law enforcement officials.
It’s going to take a local effort to bring this great idea to our country’s metropolitan police departments. If unconnected to support groups,
individuals can start their own campaigns and for those who do belong to a local autism chapter,
this issue should be brought up as a matter of priority.
Privacy advocates will certainly have their say in this matter. However, the
benefits of instituting autism registries across the country would far outstrip
any privacy concerns that may arise from them. And as long as the programs
remain voluntary, there should be no reason for resistance.
Regardless of how old our children with autism are, registries would go a long way towards keeping them safe in their
John Robison admits to being a problem child. Often sad, lonely and unable to
make friends, he was shuffled from school to school and therapist to therapist,
all while his Asperger’s Syndrome went undiagnosed.
An electronics savant who saw wiring in patterns of color, Robison dropped out
of high school and started working with rock bands, eventually engineering the first flaming guitar for the band
Kiss. He later became well-known for his 2007 book, "Look Me in the Eye," a poignant memoir of being a socially isolated misfit who
didn’t discover his autism until he was nearly 40 years old.
His brother is author Augusten Burroughs of "Running With Scissors" fame.
It was Burroughs who encouraged his older brother to write down his life
story and Robison initially agreed for his own entertainment, never imagining
that he would go on to become a New York Times best selling author and public figure.
John E. Robison is yet another example of how individuals with autism continue
to shatter stereotypes and how they are contributing to our society. In fact,
Robison himself stated that the world needs those with his condition, which is
something to be "cherished and celebrated."
Robison’s book now has a teaching guide and is used in curriculum from middle school through college.
He often makes personal appearances at autism conferences, sometimes in tandem with his friend Temple
Grandin, and he is an adjunct professor in the department of Communication Sciences Disorders at The College of Our Lady of the Elms in Chicopee, Massachusetts.
Robison’s second book, "Be Different," is completed and will be
released later next month. And on February 24, 2011, he will be featured on Discovery
Channel’s "Ingenious Minds," which should be a fascinating look into
his background and life story.
If you’re unfamiliar with the name of John Elder Robison, you will soon be
hearing much more of him as he continues to emerge as a powerful advocate for
those with Asperger’s and
other autism spectrum disorders.
Advocates for low-income, minority students and students with special needs, including the Rhode Island Disability Law Center and The Autism Project of Rhode Island scored a major victory in Providence
last week when Education Commissioner Deborah Gist announced she would scrap
a plan for a three-tiered high school diploma system tied to standardized test scores.
The plan called for students with high scores to receive an “Honors’’ diploma, those with average scores to earn a “Regents’’ diploma, and ones who score “partially proficient’’ to be granted a
basic Rhode Island diploma. Children who fail the test would have the opportunity to take it again. If they fail a second time, but other requirements are achieved, they could
still graduate with a certificate.
Opponents claimed the proposal created a state-sanctioned caste system that would stigmatize struggling students and haunt them when seeking future employment or college admission. Based on recent test scores, they countered that almost all students who
were poor, minorities, had disabilities, or were learning English would get the lowest tier diploma, if they
even got one at all.
Currently, a student is required only to take the standardized test to qualify for a diploma, receiving
one regardless of their score.
Prior to abandoning the proposal, Commissioner Gist took to the opinion pages of state newspapers to expound upon the virtues of the tiered system for honoring excellence. But hundreds of students, teachers and leaders turned out at public hearings in January to
fiercely oppose their opposition.
When at the end of the meeting, Gist acquiesced to public will, the executive director of The Autism Project thanked her
for acknowledging that "just as we don’t all learn the same, we don’t all test the same.”
Commissioner Gist stated that children with special needs, limited English skills or
who had recent traumatic events in their lives such as a house fire or the death of a parent
should be given modifications and accommodations on future standardized tests and the results of those tests would not be tied to diplomas.
While it’s important to have high standards for students in our school systems,
the correct decision was made in scrapping this program. There are plenty of
other ways students can be acknowledged for their achievements, including SAT
and ACT scores, president’s lists and grade point averages. This proposal was superfluous
and unnecessary and would have lead to further stigmatization, which is
something children with autism and other special needs already have to contend
with on a regular basis.
a Q&A portion of its website, the Mayo Clinic weighed in on the gluten
free, casein free (GFCF) diet for autism. Dr. Jay Hoecker, emeritus consultant
for the Department of Pediatric and Adolescent Medicine,
stated that there was "no evidence that special diets are an effective
autism treatment" and that "restrictive diets can lead to nutritional deficiencies."
Thanks in large part to a lack of autism awareness, there are many alternative treatments
and therapies (including the GFCF diet) that desperate parents seek out and end
up being more harmful than helpful.
Any home-brewed diet based on a lack of evidence, should not be used haphazardly. A professional nutritionist or doctor should be overseeing any type of diet being used on a child on a
regular basis. Without these measures, a child’s health can be severely
affected. Not many caregivers have access to the knowledge and diagnostic tools
such as blood work, urine samples, blood pressure, vitals or are nutritionally savvy
enough to keep a child’s well being properly monitored.
I too, tried the gluten-fee, casein-free diet for my son and ironically enough,
his healing began when I ended the diet and put him back on milks, yogurts, Happy Meals, Pediasure and Ensure.
We’re spinning our wheels and are more interested in fads rather than facts. I have never read a single
report stating that ABA (Applied Behavior Analysis), floor time, complete dedication,
or any other behavioral modification therapy was harmful. These are the things
we should be focused on.
Temple Grandin’s mother did not use the GFCF diet. Neither did the majority of parents of the greatest known adults
with autism who are now fully functional in our society.
One can search any number of alleged "fixes" and find someone touting
results. My son is my result. The parents I study with and blog with are real
and the diet did not work for them either. The positive results in GFCF studies could have
very well been brought on by other underlying factors.
Granted, there are instances when a gluten-free casein-free diet is warranted if
a child with autism has been diagnosed with allergies related to certain foods. However,
this is often the exception and not the rule.
The GFCF diet is expensive and often forces already strapped families to spend their last
leaving them discouraged and distraught when the results don’t come.
I, like many other parents, am witnessing first-hand the behavioral modification
approach and a complete turnaround in my son’s life. It is remarkable, miraculous and above all, it
does not cost us anything other than our time.
Early detection and intervention of autism is the best approach to help our
children. Let’s stay focused and base decisions on
recommendations from organizations like the Mayo Clinic instead of jumping on
bandwagons and treatments that have yet to be proven by research.
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Once again, our nation has been rocked by another young adult conducting a murderous rampage that ends multiple lives, including his own. My heart sank when the shooter in the latest tragedy, Elliot Roger, was identified as having Asperger’s Syndrome (AS). Barely past Sandy Hook with Adam Lanza, and now this. Even with some news […]