Thanks in large part to the Autism Votes
initiative, there has been a near domino-effect of states pushing for autism
insurance reform. Missouri, California, Oregon and Virginia are the most recent
states that have made headlines in the past few weeks related to this issue.
In light of the current legislative efforts to have autism-related services
covered by insurance, many parents and families are continuing to seek out what
states are the most "autism friendly."
Nearly four years ago, our site published a list that included what we felt at
the time, was the top states to live in for autism support and
services. The list was compiled from extensive research efforts, but has
since become outdated.
As we have found over the years, the problem with rating states is that
circumstances are often very fluid and things can change very quickly. Additionally, services can be vastly different from county-to-county or city-to-city. As such,
any "top" lists are subject to flaws.
Then there is the issue of subjectivity. What was found is that two families residing in the same state can have two vastly different
experiences. As a result, one may tell you the state is terrific, while
the other will say how horrible it is.
If anyone is looking to relocate to a state that will be best suited for your
child with autism, it is suggested that you do extensive research and not
rely solely upon an article, news report or limited information. Talk to
parents, educators, and caregivers who reside in the state and get your hands on
as much information as you can.
Probably the most beneficial resource about individual states and how they
relate to autism can be found on the Easter Seals website. They have a
tremendous amount of information compiled on each state that will be extremely
beneficial to potential and existing residents who are in need of autism
The Easter Seals list can be an excellent start to your research, but like anything else,
should not be solely relied upon when you make a decision on where to live.
Hopefully, in the near future, we will see sweeping federal legislative changes
that address autism so everyone, regardless of where they live, will be on a
level playing field. Until then, be sure to fully equip yourself with knowledge and information to give your child the best future possible.
The number one cause of death of individuals with autism involve incidents
associated with wandering, which include exposure to the elements and drowning.
Both occur frequently and a quick glance at the latest autism news headlines
will reinforce these unfortunate statistics.
Children with autism are typically drawn to water. Regardless of the tactile stage of recovery,
we came from a safe, liquid-filled womb that the subconscious still remembers well.
Furthermore, water is soft and exerts equal, unchanging pressure evenly across the body, thereby
preventing the trigger of painful touch issues often found with tactile and sensory dysfunction.
Then there is the problem of not always having gag or panic reflexes. Autopsies of
autistic persons involved in accidents typically show no signs of struggle. Most
incidents involving a drowning happen within seconds, even to those with autism who have been in the water numerous
times. When submerged, water is inhaled into the lungs as if there were no built-in
receptors to stop this from happening. From bathtubs, to lakes and even public fountains,
individuals with autism will be drawn to water and need to be protected.
Since we can’t enclose our neighbor’s pools or the water fountains in community
parks, what shall we do?
The answer is quite simple: we must enroll our children in swimming
lessons. The YMCA is not just a great song from the 1970’s, but a great and
often forgotten resource that is very helpful for many activities. Membership at
your local "Y" will be very beneficial to both you and your child.
Upon joining, tell everyone that your child has autism. They may already have some good awareness or they might need some time to do research.
Drownings are happening at an alarming rate to those with autism. Protecting
your child can start by notifying your neighbors with pools and spas that your child is
autistic and is drawn to water. Public awareness is your responsibility and swimming lessons are a
must. They are also fun.
Get started immediately and don’t allow your child to become another tragic
statistic. You will find that the time spent together in and around the pool
area will be rewarding and a tremendous bonding experience as well.
Over five years ago, when we first received our son’s autism diagnosis, one
of the first questions I remember asking myself was, "Why me?"
"Was I being punished for something I had previously done?"
and "What did we do to be dealt such a painful lot?"
It’s reasonable to assume that most parents have posed these tough questions at some point during their autism journeys. However, as
I’ve come to embrace my son’s condition over the years and after spiritual
growth and maturity, my question now is, "Why not me?"
Some of the most compelling verses in the Bible that deal with this vexing issue
can be found in John 9:1-3.
When encountering a man who was blind from birth, Jesus’ disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
The response from Jesus, in my opinion, helps address most of these difficult
questions we have related to my child’s condition: "“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in
When looking at our challenges from this perspective, we will soon discover that
there is a greater purpose for our pain and trials. We have been called to be
light in the midst of darkness and to bring hope to others who are facing
similar challenges, all while God can be glorified in the process.
I realize that for some, this may not be applicable due to your particular
beliefs. However, this does not change the fact the YOU have been chosen for a
greater purpose and YOU have been called to step up, step out, and be a beacon
of hope to others.
Perhaps you will one day run a major autism organization. Perhaps you will
start a local support group. Maybe you will be a political advocate and bring
forth legislative changes in regards to people with autism and other special
needs. Or maybe you will be there for only one family, providing hope and
support for them during their darkest hours.
Do not waste the opportunity you have been given through your child’s condition
to leave an everlasting mark that will bring hope and inspiration for many more
families that are sure to follow our path.
I am not "cursed" nor am I "being punished" for what has
happened. To the contrary, I have been given an incredible gift and an
opportunity to make a difference in other people’s lives, all while allowing God
to be seen through me, glorifying Him in the process.
A wrongful death suit against the Los Angeles Police Department highlights the need for police to be
properly trained in recognizing and interacting with
children with autism.
Mohammad Chaudhry, a twenty-eight year old Pakistani-American was fascinated with how people survive brutal conditions and made it a habit to sleep outdoors. The account of what happened,
news reports, is as follows:
¨It started as a routine police encounter after officers spotted a shadowy figure lying under a balcony behind a Hollywood apartment building. The man, Mohammad Usman Chaudhry, was cordial at first. He handed over his ID and chatted with officers about his shoes, other cops he knew and how he stayed dry when it rained.
Moments later, he was dead."
The officers in question report that Chaudhry was glancing around suspiciously and appeared to be pulling something from his waistband. The officer who fired shots contends Chaudhry pulled out a knife and lunged at him, but his partner saw no weapon, and Chaudhry´s heartbroken family contend a knife was planted after the fact.
Indeed, until the suit was filed, the knife in question was never tested for Chaudry´s
DNA and when it finally was, there was no evidence that the slain man had ever made contact with it.
There has been an alarming uptick in the number of cases such as this, including a police brutality suit in Seattle over an autistic teen stopped for jaywalking who ended up with four police officers on him, a broken nose, and a concussion.
Some police departments have begun to educate officers in dealing with
individuals with autism, but they are simply only one-hour classes. Autism advocates point out that law enforcers need at least eight hours
of training in how to distinguish autism from psychiatric impairment and drug influence, then interact successfully to avert more unnecessary tragedies.
Dennis Debbaudt of Autism Risk and
Safety Management, runs an organization that involves the training of law
enforcement officials for just these kind of scenarios. Autism Key previously
interviewed Mr. Debbaudt, who is an ex-law enforcement official and a father of
a child with autism. In the interview, he gave some very insightful information
about the need for the kind of training his organization provides. That
interview can be heard here.
Hopefully, more law enforcement agencies will take advantage of the available
training to better equip police offers and first responders in dealing with
those with autism. If not, cases like the one involving Mr. Chaudhry will
continue to take place.
I have been somewhat criticized for making myself and my child a
"walking billboard" for autism. I have listened to and given much thought
on this matter, keeping my child’s privacy in mind. However, my most recent research into the difficulties presented
for emergency workers, thanks largely to a number of authors who have written much on this subject,
has reassured me that I am in fact, doing the right thing.
Should something happen in your home such as a fire, emergency crews will arrive
and they’ll need to have as much information as possible about your child. Any
child will be scared in such an instance, but think about how your autistic child will
feel when "alien" looking creatures show up with axes and breathing
masks — they will most likely hide and stay hidden. They may not, or very likely,
CANNOT cry out for help. They will most likely not respond when they are called
out to. As a result, the emergency workers will need any information they can
IF and when they have rescued your child, first responders must also know that your child needs unique treatment. This is a two-way street. Your child needs to be prepared and
the teams of people helping in your community need to be prepared as well.
Regardless of what the emergency may be, whether it includes emergency workers or retail employees, information about your child’s special needs
is in the best interest of you and your child.
Personally, I will be contacting the city to see what it would take to have a street sign with
"Child With Autism" placed in front of my apartment. This will guarantee that whether an emergency team responds to an injury, a wandering incident, a burglary or any other situation, they will be prepared to respect and assist my child in whatever the case may be. It may also help your neighbors to understand the screams that accompany your child’s typical
meltdowns, which may otherwise be misinterpreted.
My child wears t-shirts with autism slogans, my purse has puzzle pieces on it and I am having our sneakers painted with autism slogans and cause ribbons. I just ordered 2 yards of the
autism puzzle piece fabric and will be thinking of other ways to decorate
When we recently moved into our new neighborhood, I walked up and down my street and told
everyone about our journey. My child is four and will tell you himself that he
has autism. He may not know what that means, but upon hearing his declaration, those in the community will know that he is special.
Labeling your child is essential for social, medical and educational resources,
as well as emergency response teams and overall community awareness. Telling the world your child
has autism is also one of the first steps in coming out of denial. You need to both learn and prepare for what your child’s best interests really
Perhaps it’s pride, shame or our own idea of "protecting" when we fail
to notify others about our child. The age-old stigma that was placed on
those with special needs cannot be broken if we don’t all bring this out into the light. The
current numbers of autistic persons that are known are just the tip of the iceberg
due to those undiagnosed and those in hiding. Coming forward is a necessary
element to place autism at the global forefront where it belongs.
Emergency response teams have difficult jobs. Don’t make their work harder, or even impossible, because you are afraid or have justified guarding
your autism "secret." Above all, don’t wait until it is too late.
It’s not just your child that needs help coming out of the darkness — it is
you as well.
Turn the lights on in the scary closet to reveal that there are no monsters, then proudly tell the world,
“My child is unique, isn’t yours?”
Any parent with a school-aged child knows that both classroom issues and homework
can often be overwhelming for students. And no one knows that better than the parents of
a child with autism. Not only do autistic students have an academic curriculum, but they have a social curriculum which is every bit as demanding and exhausting. Deciphering a myriad of social cues, making incessant transitions, contending with sensory input –
it’s a day’s work in itself. Is it any wonder that they balk when it’s time to hit the books at home?
Parents, take heart. Accomodating for a child with autism is their legal right.
Extensions on due dates and taking a class pass/fail instead of having a letter grade can be very
helpful in easing the stress and anxiety that are commonly associated with
academics. If your child is dyslexic as many with autism are, proper spelling should not impact his or her grade. If writing out ideas is particularly
odious or poor penmanship associated with fine motor skills is a problem, your child can
have a scribe.
Additionally, accomplishing assignments in short bursts with breaks in between
can relieve the stress of a long assignment.
The renowned autism expert, Dr. Tony Attwood, has written extensively on the subject of homework
and academics for autistics in his books and articles. After invoking his sage advice that autistics work no more than thirty minutes a night on school work, one teacher let me
initial my son’s homework after a half-hour spent, then considered him done.
In the classroom, many useful ideas can be written into an IEP such as using a keyboard instead of taking notes longhand, having a calculator, learning math with computer software instead of in a group, and creating a cozy corner with pillows and books for the
over-stimulated youngster to retreat to.
Listening to an iPod is helpful as well
if your child is soothed by music. Middle and high school students can be
dismissed five minutes early from class to avoid the crush of humanity in the
halls and be given time during the day to do their homework at school.
You know your child best. Give free expression to your ideas about what would enhance their learning experience, then work to have them implemented.
Improvement in the quality of your
child’s educational life through your efforts, on their behalf, is a profoundly gratifying experience
and something that should not be overlooked.
Earlier this month, we wrote about an upsetting incident involving the arrest of a girl with special needs on a school bus. The officer in the incident,
Deputy Mark Perrin, was fired as a result of his actions:
One of the pressing questions that has yet to be asked in that case is, "Where was the bus driver in this
incident and why didn’t
he/she immediately let the officer know about the child’s
condition when he stepped onto the bus?"
This poses the larger issue of the need for proper training and awareness for
EVERYONE who will potentially come into contact with special needs kids on a day-to-day or
week-to-week basis, particularly school bus drivers.
Recently, after a lengthy conversation with the state head of
School Transportation, Special Education, I was asked to write a paper that
would be used in semi-annual training for drivers and monitors.
My training information has since been implemented and is being used as a positive
training and educational tool. This all stemmed from my son’s monitor and driver, who
both refused to greet or speak with him on his forty-five minute bus
trip each day.
After the training was implemented, they began to greet and speak with him
on a daily basis.
Here are some excerpts of the paper that was implemented in the
AUTISM is at epidemic levels and still increasing.
Of the children who are screened, less than 1 in 52 boys are predisposed to
autism spectrum disorders.
Less than 1 in 200 girls are also affected.
These numbers are based solely on the children screened. Estimates of the population that are not screened are over 50%.
This is up over 400% from 10 years ago.
There are many other and overlapping spectrum disorders that are on the rise
such as ADD, ADHD, Tourette’s Syndrome, and OCD.
Perhaps if we think of autism as delays, it will no longer sound so overwhelming. Whether it is batting a ball or potty training, we are all delayed in some areas. Autism, however, affects
social behaviors. Kids may not be expressing needs, likes or wants, but they
have them just like
They also may be over-expressing them with temper tantrums, meltdowns and
other behaviors that involve "acting out." Of course it’s much more complicated than
that, but this will help you understand and not be as confused or overwhelmed
when dealing with an autistic child.
Autistic kids appear to be typical kids.
What can we ALL do to help?
Children with autism have interrupted senses. There is ongoing research and detailed information about their skin, pain centers, taste, smells, hearing, sight,
and light sensitivity. If the area is affected, it will either be too sensitive, not
enough, or not working at all.
Children with autism kids also take everything literally. If you say it’s raining cats and
dogs, they will look out the window and think of puppies and kittens are falling from the
sky. Say exactly what you mean and try to avoid such clichés.
Children with autism think in pictures and visual stimulation is what they crave. Think of
Barney, Chris Rock or whoever you think of as highly animated. Now think of watching the
news and imagine Jim Carey or someone else similar as the news anchor! Yes, it would be worth watching and you couldn’t help it. It would also be fun. It’s not WHAT you say, it’s HOW you say it.
Children with autism remember each and every part of their lives like a photograph. Your
face and your expressions will burn into their memories like a scrapbook. Everyone likes to be remembered as smiling and
Please be animated. Use gestures. Vary your voice and expressions. Don’t be fooled into thinking the kids don’t understand everything you say
or don’t say.
Though they have many similarities, no two autistic children are the same, just
like snowflakes. Neither are typical kids. Neither are we.
To date, autism is not deemed "curable." It will exist for a lifetime. There is NO degree of severe or mild upon diagnosis,
that judgment is made depending upon the amount of therapy it will take for the
kids to "catch up." No one knows until the evaluations are done and accommodating therapy begins.
Adults with autism are generally "quirky." Quirky people are fun to be around and uniqueness is what makes us all interesting and remarkable.
These kids CAN grow up and lead functional lives and each person in their life can
help (or hinder) that possibility.
Since they need to feel safe, as we all do, please make eye contact, know their
names and do not underestimate what they might be thinking.
Children with autism need to be welcomed by the world they are born into, kind of like
being a new kid at school. Something as simple as being greeted and invited to sit at a lunch table instead of eating alone in silence can
literally change a life.
Drivers and especially monitors, imagine that YOU can be the one to change that life.
Now, don’t imagine anymore — go out and make a difference!
Every parent of a child with autism knows the financial and emotional burdens of
the disorder, the long waiting lists for services, the exorbitant costs of
services, all the while the clock ticks on vital early intervention.Historically, lack of insurance coverage for autism has left many in dire
This January, Oregon entered the fray as
the first state of 2011 to introduce autism insurance reform legislation with
both a House and Senate version of the bill.
The article posts a link to AutismVotes.org
which presents a map of the country detailing the status of legislation in each
state — a fascinating overview of the national movement to get all 50 states on board.It’s encouraging to discover that more progress has been made than one
might imagine.Twenty-three states
at this time have enacted autism health care reform with only Oklahoma, Utah,
and Wyoming having done nothing whatsoever.
On January 21st of this year, California
was the next west coast state to introduce legislation to make sure autism
treatment is covered by insurance.This
bill takes on the insurance companies as well, mandating that loopholes be
closed so that insurers cannot impose arduous waiting periods for payments.It also prohibits them from shifting costs to public agencies, avoiding
taxpayer burden and concomitant wrath.
But even when states have enacted autism
reform laws, it doesn’t mean the problems are over.AutismVotes.org is also confronting inequities instates where insurance plans aren’t required to cover autism services if
they are ¨self-funded."Assuring
there is across-the-board parity is another ambition of the group.
According news reports, Smith was a therapist for the South
Carolina Early Autism Project, but it appears the organization is denying the
assault took place on their watch as there are some discrepancies between his
time with SCEAP and when the alleged crime(s) occurred. For good reason, many
involved in the case appear not to be talking to the media.
It’s also unclear what kind of acts Smith may have committed, but one report says an attempted choking incident occurred back in 2009.
It’s not known if that incident is tied to the current criminal sexual
misconduct charge or if it was a separate, unrelated incident.
What’s interesting is in his mug shot, Smith appears to be wearing a wedding
ring. It’s not uncommon for child predators to marry or pretend to be married as
a "front" to help gain the trust of victims and their families. It’s
too soon to say if that applies to this case or if Smith is in fact married, but
what’s interesting is that police have stated that there may be other victims,
which would fuel the speculation of a possible double-life.
Additionally, reports say that Bradford Smith has posted a $50,000 surety
bond and is currently out on bail.
It’s cases like these that really emphasize the need to overhaul the criminal
justice system when it comes to those who prey on and take advantage of our
children and special needs population. The courts need to come down HARD on individuals that violate the trust that is given to them
by parents and their children.
This case will be monitored closely and if in fact Bradford Smith is convicted of these crimes, it is our hope that he is punished to the fullest extent of the law. If convicted, he faces up to 30 years in prison.
On January 21, 2011, CNN.com ran an Op-Ed by Dr. Rahul K. Parikh stating that parents of unvaccinated children should pay substantially higher insurance rates than those who are in compliance. He argued that the discrediting of Dr. Andrew Wakefield,
once and for all, settled the issue of vaccines and autism. Furthermore,
it was suggested that the obstinate parents who refused to be convinced, must now pay exorbitant premiums for their unvaccinated children,
who are putting everyone else at risk.
Dr. Parikh´s central premise that the repudiation of one study settles this
issue once and for all is illogical, if not ludicrous.
When asked if there is life elsewhere in the universe Carl Sagan sagely replied, ¨Absence of proof is not proof of absence."
The same can be said for the vaccine controversy. The disgracing of a single study does not constitute proof that there is no correlation between the rise in autism and the rise in the
number and types of vaccinations required by law.
Dr. Jacqueline McCandless, the brilliant clinician and autism expert came to Dr. Wakefield´s defense by circulating a petition stating, ¨Dr. Andrew J. Wakefield’s findings of gastrointestinal pathologies in a subgroup of children with autism are very important. His persecution is akin to the persecution of Semmelweis¨.
For the unknowing, of which I was one, Ignaz Semmelweis was the nineteenth century Hungarian physician who advocated hand washing by staff in hospitals to reduce infection. He was ruthlessly scorned, then later
vindicated (You can read Dr. McCandless´ entire statement at the Age of
Rather than ending the vaccine debate altogether, the current media blitz of the dangers of Dr. Wakefield and his study have intensified the need for more clear-eyed, impartial research by scientists whose only aim is to find the truth,
whatever that may be.
The cynic in me says this will never happen, but the idealist says it must. The backlash against Dr. Wakefield and
the questioning of parents is evidence that the plates of society’s bedrock assumptions are bumping up against each other and inexorably shifting.
All information in this site is presented for support and educational purposes only. It is not intended to substitute for medical treatment or visiting a licensed medical physician. 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.
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