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.
Scott Hirko Photography
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.