The Reason Why We Fight
Despite the recent proposals by various states to pass or introduce autism
insurance reform, the reality is that most states in the country are still
extremely deficient when it comes to providing autism-related funding and
services. The lawmakers have realized the error of their ways and are now grandstanding
before the media (and everybody else) gets a grip on reality about what has been
One year ago, I left everything in Washington State, including my home and older children, to move to
upstate New York to get the best possible services for my four-year-old son with
autism. Washington is currently ranked 48th in resources for autism and New York is ranked
fifth. The westernmost accommodating states are Wisconsin and Missouri. The rest are in the
northeast, and include New York, Pennsylvania, and New Jersey.
Add in a tremendously low cost of living in upstate New York (because of the harsh winters), and you have
one of the best places to live for autism services. Families have been migrating to these
top states for help for the last ten years and thankfully, they are getting it.
In my opinion, Boone County, Pennsylvania, is the number one place to live, hands down. However, the million-dollar Pocono lifestyle and homes are
way out of most families’ budgets. That’s why I came to Onondaga County, New
York, where my son is receiving up to a half-million dollars in therapy and services each year.
Australia and the United Kingdom are way ahead of the US in providing proper
treatment and therapy to all diagnosed persons with autism. Catching up will be
difficult. At the current rate, our Social Security system (and other
government programs) will be bankrupt within seven-to-ten years. The estimates
of the well drying up in 2037 are incorrect, and lawmakers know it.
Don’t get too exciting when reading the latest headlines about autism
"reform" and lofty promises by lawmakers. These rarely trickle down into hands
of a child’s immediate needs. In fact, due to the lack of properly trained
professionals, it will take years to see any meaningful difference.
I spent fourteen months advocating and battling for services in Washington State. This is a
no-tax state, which was part of the problem. After tremendous paperwork, getting advocates
involved, and nasty battles, I ended up with 3 days a week, 2 ½ hour early
intervention sessions with unprepared teachers. As a result, we had minimal results and
non-productive speech. The teacher and speech therapist meant well but lacked the training and
skills needed to be effective. I appreciated their efforts, but the reality was
that my son was not thriving.
The school district did not want to give my child summer school or an ESY (Extended School Year).
This was critical because it’s been proven that without three or more days of a school
program and therapy, a child with autism will show regression. As a result, an
effective autism school and/or early intervention program will be year-round and
not just occur during the regular school year. Study the IDEA (Individuals with Disabilities Education
Act) laws and know them before your first IEP (Individualized Education
Program) meeting, so you are well-informed about these issues.
What Washington gave me in place of not having a summer program, was a self proclaimed
"Autism Therapist." After four sessions into her therapy and personally witnessing her slamming my child into his chair, whiplashing another student, and having zero progress with another, I
pulled my child out. She grabbed my arm forcefully as I was leaving with my family, seething with anger and tried to intimidate me saying, “your child is a hard
one.” A call to CPS should have been made, but I vowed to focus solely on my son’s healing
and not get bogged down in lawsuits or "he-said, she-said"
Without a doubt, the best programs in Washington pale in comparison to the worst programs in New York.
If that were not the case, I wouldn’t be foreclosing on a half-million dollar horse farm, recovering from a divorce
or given away most of my things.
My studies and conversations with other parents and personal experiences have led me to the conclusion that the state you are in will
define your child’s future.
As stated, lawmakers are continuing to hash things out, but these changes will
not make an immediate difference when it comes to hands-on therapy. So if your state does
happen to pass laws handing out cash or institute legislative mandates, there is
the secondary issue of finding the properly trained persons to address the
therapies and services that are being funded.
Don’t believe people just because they are in an administrative or authoritative
positions. They are not all bad, but the majority lack the proper knowledge and training. There’s no excuse since the research has been completed and proven.
Your child doesn’t have a lot of time. Moving to a state where resources are available
five days a week through a school system should be strongly considered. You need
to have access to an agency like Enable, who will bring ABA into your home well
after the early intervention period is over.
Forty-percent of non-verbal autistic children will never speak. My son was almost one of them.
This high percentage is directly linked to the lack of trained persons and no access to accommodating
services in the majority of our states..
I cannot explain the joy I felt when two months of New York-style therapy brought out my son’s full speech at
three years old. Now, thanks to the great state of New York and the SPICE program, I can finally hear him tell me and write his likes, dislikes, feeling,
Most importantly, he hugs me, kisses me and says, “I love you mommy, I really love you, I love you forever and ever!”
Washington State left my son and I with little hope when I was told, “he’s a hard
one." In only 9 short months, the services provided by New York
caused me to receive daily progress reports and happy handwritten pictures
expressing my son’s love for me.
It’s treasures like these that make moving 3,000 miles away, along with
countless other sacrifices, all worth it in the end.
It was this past August on my son’s fourth birthday when I hooked up his
VTech V.Smile game for the first time.
In the pattern of how I have been teaching him new things, his older brother and I took turns playing while
he eagerly watched on.
After finally getting his chance, his first experience was disastrously adorable and produced
a lot of smiles, but no gaming skills. I have learned not to get stuck on game
rules and focus on the bigger picture.
V.Smile, with a joystick, is a great starting point to the interactive gaming
world for children with autism. Games vary from beginner, like Wubbzy and Winnie
the Pooh, to the more difficult games such as Scooby Doo and Toy Story. It’s
important to have a range of games on-hand with various difficulty levels because once a child grasps the joystick and functions, there’s no telling what he
or she can do.
The V Motion controller is much harder and requires a child’s upper body to
engage (similar to a Wii), instead of just a handheld joystick. We tried this briefly when one of
our controllers broke, but it was just too difficult. As such, the V Motion is
not a good place to start unless your child is accustom to playing a Wii.
Most of the games, including those from Nickelodeon and Disney, can be played on either
format (V Smile or V Motion), but you will need to read each game box carefully. If your budget is tight,
eBay and Half.com are great resources to acquire previously owned games. I have seen
used consoles, with controllers and games included, for under $25.00 (plus shipping).
These games help improve hand-eye and body coordination, which is a great
alternative to having your child aimlessly stimming and staring into the
TV all day.
VTech teaches by using numbers, counting, letters, spelling, shapes, colors, sizes, tracing, matching,
and math. There’s also a hand-held version which can be taken into the car and along to stores.
VTech is also valuable for children with autism because you have the option to
play from one level to the next, or you can choose whatever level is best suited
for your child. There’s also a learning area, and in many cases, a sing-along
option with lyrics. There is a microphone option on many of the consoles, which
adds the dynamic of karaoke.
Since August, my son has learned to correctly spell from Mickey Mouse, learned upper and lower case
letters from Winnie the Pooh, and practiced math with Buzz and Woody, all while
his favorite characters cheer him on.
As usual, the biggest lesson was mine. I will never again make the mistake of underestimating what my son’s hands and brain are capable of.
I highly recommend the VTech V.Smile. Its ease-of-use, simplicity, and diversity
are great for teaching. I encourage parents of moderate-to-low functioning
children with autism to check it out and don’t forget the extra controller so
you can join in on the fun!
Mohammad Usman Chaudhry (AP/Chaudhry Family)
The Los Angeles Times is reporting
that a federal jury has awarded $1.7 million dollars to the parents of an autistic man killed by a Los Angeles police officer.
Mohammed Usman Chaudhry was a Pakistani-American with high functioning autism whose keen interest in how people survive on the streets led to an encounter with Officer Joseph Cruz and his partner. The officers questioned Chaudhry as he slept beneath the stairs of an apartment house. Cruz maintained that out of nowhere, Chaudhry had attacked him with a knife and he had no recourse but to shoot him.
However, DNA testing of the knife and his partner´s conflicting account failed to support his claim.
The jury unanimously found that Cruz had used excessive force and acted in “a reckless, oppressive or malicious manner.”
The trial put the City of Los Angeles in an embarrassing position. After the Chaudhry death, Cruz had been fired in an unrelated incident for lying in a police report about a prisoner he had allowed to escape. When Cruz tried to get his job back, the city successfully argued that he was not credible and no longer deserved to be a police officer.
Then, during the Chaudhry hearing, City of Los Angeles lawyers were placed in the unenviable position of having to argue to the jury that Cruz was totally truthful about the circumstances of Mohammed´s Chaudhry´s death and no choice but to shoot him.
Not enough police departments have begun training officers in dealing with the burgeoning population of citizens with autism in their midst, and those who have need to go into more depth than the cursory one hour course commonly used.
Interestingly enough, the $1.7 million dollar amount matches the same
number of individuals estimated to be living with an autism spectrum disorder in
the United States. That would mean Chaudhry’s family has been awarded roughly
one dollar for every person with autism in the United States.
It’s unclear if the jury was making a statement, or if the award amount is purely coincidental.
Either way, the court victory shows that municipalities now have 1.7 million reasons to get more training
for their officers so similar incidents are avoided in the future.
Today, the Virginia House of Delegates moved closer towards providing
increased autism coverage for residents of the state. HB 2467 advanced on
a "voice vote," despite opposition by some House members. The
proposed bill would mandate coverage of applied behavior analysis for children
with autism between the ages of two and six, with a max. annual cap of $35,000
Some complained that the bill doesn’t do nearly enough as the requirements would
apply to state government entities and not to self-insured businesses or businesses with 50 or fewer
employees. A similar bill is moving through the Senate of Virginia.
The actions of the state of Virginia are part of a broader movement nationwide
to increase coverage of services for individuals with autism spectrum disorders.
Autism Votes, an initiative launched by Autism Speaks, has had a major role in
helping to enact this type of legislation across the country.
While these proposals by individual states are welcomed news, what is needed
even more are sweeping federal changes that will help address the issue of
autism services and insurance. Only then, will we begin to see parity across all
fifty states in relation to services and support. As of now, many states,
including some of the larger ones, are seriously deficient in the types of
services and programs they offer.
Although the bill is not what many wanted to see, at least Virginia is taking a
step in the right direction to increase services for its residents.
Now if only Utah,
Wyoming and Oklahoma would get on board.
For families of children with autism, we know all too well the challenge of
communication between us and the child. Autism affects both receptive and expressive
communication skills and can often leave everyone frustrated at the inability to convey a simple request.
But Apple has unwittingly revolutionized the autism world with the technology of the iPad (or iPhone or iPod Touch). Coupled with downloadable applications, or ‘apps’, that have been developed to enhance communication between children and their parents (or caregivers, teachers and therapists), the results are nothing short of miraculous as
families are able to engage in quality time together.
Culled from several sources and parental input, here is a list of apps that are popular with special needs families:
Apps for Communication:
– Provides a full-featured augmentative and alternative
communication (AAC) solution for those who have difficulty speaking. It contains text-to-speech voices, up-to-date symbols, powerful automatic conjugations, a default vocabulary and much more. Proloquo2Go, available for iPhone and iPad at $189.99, is considered a good alternative against buying an expensive AAC device.
2. First Then Visual Schedule
– Allows the creation of visual schedules that provide positive behavior support through the use of images that show daily events (i.e. morning routine or therapy schedule) or steps needed to complete a specific activity, (i.e. using the restroom). First-Then Visual Schedule is completely customizable to each user’s individual needs and personal voice recordings and images can be added directly from their computer or iPhone camera (in addition to the images in the application’s stock li-brary) to create a schedule. This personalization allows for schedules to be created and updated on the go, helping transition through unexpected changes in a daily routine.
Extremely useful for individuals in scenarios where visual schedules serve to increase in-dependence and lower anxiety during transitions through different activities. First-Then Visual Schedule is available for $9.99, currently offered in English and is compatible with iPhone and iPod Touch.
– Just tap a picture and TapToTalk speaks. Each picture can lead to an-other screen of pictures for more detailed conversation. TapToTalk allows the creation of personal AAC albums, with an option to add your own pictures and sounds, to meet the specific needs of the user and includes a library of over 2,000 pictures. Albums created in TapToTalk Designer are “synced” over the internet directly to your iPhone, iPad or iPod Touch. The TapToTalk app is available for free, but there is a yearly
– People with autism have trouble interpreting emotions and under-standing what different facial expressions may represent. Autism Xpress helps
individuals recognize and express their emotions through its fun and easy to use feelings chart. The Autism Xpress iPhone app is available for free.
– Grace is a digital version of the Picture Exchange Communications System, a book that helps those unable to speak to build sentences from relevant images. The app starts with 400 images that were chosen by non-verbal people as communication starters. For example, categories include colors, food and drink, my body, and places. Grace allows the users to build their “photo vocabulary” by snapping their own photos to use within the app. Grace is available for $38.
Apps for Parents:
6. IEP Checklist
– An Individualized Education Program (IEP) is designed to support the educational needs of school aged students with disabilities. The IEP Checklist App helps parents of students with special needs become better informed advocates by making IEP information easier to access. Version 2 has active links to the relevant lan-guage in the federal regulations, allows users to record the IEP meeting or record notes, and has the capacity to print out notes and click on a checklist as requested items are discussed. The IEP Checklist app is free.
7. Behavior Tracker Pro
– allows the tracking and graphing of behaviors by frequency, duration and rate. Option to record a video of behaviors or interventions to for later re-view with parents, teachers and therapists. Available for $29.99.
8. Autism News Reader
– grabs the top stories from the best autism health news and information sites and delivers them to your iPhone. Available for $0.99.
Many autistic children also respond well to music and art, and some enjoy fast moving games or interactive storybooks. Since a child’s preference varies, here are some of the apps that my two sons enjoy (prices vary):
- ABA Flash Cards
- Doodle Buddy
- Toy Story
- Spongebob Marbles and Slides
- Crash Bandicoot Nitro Kart
for more details.
An eleven-year-old autistic boy in Edgewood, Washington with a keen interest
for X-Box games, was recently labeled a ¨Cheater¨ by Microsoft for allegedly
tampering with his account to boost his gaming scores. This comes from a boy who didn’t play basketball because he believed taking the ball was stealing, so seeing the word
¨Cheater¨ beside his name and losing his gaming achievements
was particularly devastating.
His mother contacted Microsoft, who stood by their assertion. Apparently, the ¨Halo¨ whiz had given his login information to a third party who likely boosted his scores.
The right thing to do would be to remove the label, restore his legitimate achievements, give him a new username and password, and
educate him (and others) about the need to keep information private. But Microsoft insisted
on treating this case as they would any other.
This disheartening event calls to mind the general issue of gaming as a whole.
Parents of children with autism are usually uneasy to see their already-isolated children
consumed with video games for hours-on-end in front of a TV screen.
But researchers are beginning to see that quality in a different light, capitalizing
on an autistic child’s extreme focus, adeptness with computers, and love of repetition as a teaching tool.
Enter John Lester, creator of ¨Brigadoon," an online game specifically for
those with autism.
He describes his creation at
“The idea is to create a private haven where people dealing with Asperger’s/Autism can practice their socialization skills in an environment where everyone knows everyone else. People dealing with Asperger’s/Autism sometimes have real difficulty dealing with social situations, and they are often filled with great creative ideas. Brigadoon gives them a place to meet other people also dealing with Asperger’s/Autism, a place to socialize with each other, and a place to build and create their own world filled with wonder and beauty.”
In January 2011, MNSBC reported that researchers across the globe are now developing more
and more video games for autistics.
A multimedia, computer-based game designed to teach facial processing skills is in the works under the title ¨Let’s Face
It." As a suite of mini-games, the program uses photos, sounds and positive feedback as part of a
reward system to encourage kids to decode
people’s facial expressions and emotions.
Cutting-edge researchers in Ireland are also creating games to study cognitive skills in
those with autism, using gesture recognition software that registers the players’ movements and transfers them to the screen.
“From my work, I know that a lot of children [with autism] have production skills we never would expect,” says Maggie McGonigle, leader of the project and an expert on non-verbal communication. “So I’m hoping that language-like skills are locked up in their brain even if they can’t speak.”
Soon there will be a plethora of choices that tap into an autistic child’s passion for video games.
These are great resources that will help take advantage of a child’s
strengths, allowing them to develop much needed skills to help better prepare
them for day-to-day life and hopefully for many, independent living.
And rest assured, they
won’t risk being branded a cheater by Microsoft.
If you have an a child with autism, you will invariably at some point hear the term, ¨Sensory Processing Disorder¨ (SPD).
¨The Out of Sync Child¨ by Carol Kranowitz, is one of many greats books on the subject and comprehensively addresses this condition, which can many times be debilitating for both parents and children, disrupting day-to-day life in a significant way.
Here is a description of what that term means, provided by the
Sensory Processing Disorder Foundation:
“Sensory processing refers to our ability to take in information through our senses (touch, movement, smell, taste, vision, and hearing), organize and interpret that information, and make a meaningful response. For most people, this process is
automatic. We hear someone talking to us, our brains receive that input and recognize it as a voice talking in a normal tone, and we respond appropriately.”
Children who have a Sensory Processing Disorder (SPD), however, don’t experience such interactions in the same way. SPD affects the way their brains interpret the information that comes
in. It also affects how they respond to that information with emotional, motor, and other reactions.
For example, some children are over-responsive to sensation and feel as if they’re being constantly bombarded with sensory information. They may try to eliminate or minimize this perceived sensory overload by avoiding being touched or being particular about clothing. Some children are under-responsive and have an almost insatiable desire for sensory stimulation. They may seek out constant stimulation by taking part in extreme activities, playing music loudly, or moving constantly. They sometimes don’t notice pain or objects that are too hot or
cold and may need high intensity input to get involved in activities. Still, others have trouble distinguishing between different types of sensory stimulation.
Sensory Processing Disorder is distinct from autism, although they often co-exist. The medical mainstream has yet to recognize
it and you won’t find it in the diagnostic manual. In addition, its
treatment is not covered by insurance.
I first heard about SPD when my son was in elementary school and was so riddled with anxiety, that life was truly harrowing. Every morning, I was a nervous wreck as I tried to find my son the perfect pair of socks. If the seams were too thick, or not lined up just
right, he would go into meltdown mode and we couldn’t get out the door.
The same went for labels on shirts. Cutting them with scissors often left a scratchy
remnant, only compounding the problem, and cutting too close to the seam would create a new hole in the garment.
And speaking of holes in shirts, my son would chew the front of his shirt until it was sopping wet and riddled with teeth marks.
When we finally made it out of the house, the onslaught of traffic noises caused him to physically reel to the point where I had shield him from careening into the street.
His psychiatrist kept upping the ante on the kinds and dosages of drugs he was prescribing him, but my intuition told me that if I could address his sensory triggers, his anxiety would be diminished.
But how is this done?
Fortunately, there are products that address these and other issues, bringing immediate relief to child and family. Seamless socks eliminate the daily morning meltdown. Shirts without labels make dressing no big deal. A specially designed, orthodontist approved chew toy for youngsters and adults lets them work their
teeth and jaws without ruining clothes and having to contend with the feeling of damp fabric against skin.
Noise-reducing headphones make an astounding difference both indoors and out. Filtering out cacophonous background noises affords an immediate sense of calm and improves functioning in public places. And
finally, a weighted blanket instantly comforts when the world gets to be just too much.
Sadly, a principle source of all these products, Sensory Comfort, is going out of business. But they are clearing out their remaining stock at big discounts and have provided links to their suppliers.
But whereas Sensory Comfort used to be the only game in town, a Google search of ¨Sensory Products¨
now turns up multiple new companies.
Take small, practical steps to help your child experience his world with greater ease and calm. Little things can make a big difference in their lives, and everyone close to them shares in their gains.
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.
Here to View All the State Profiles for Autism Resources and Services
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.
Click here to locate
a YMCA in your area
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.