Years ago, I researched different states in the possibility of moving, using only two criteria: 1. a state we wanted to move to and 2. a state that provided similar autism-related services that New York did. To make a long story short, we are still in New York; I enlisted comments from groups and message boards on Autism Speaks Social Network and looked at what the states themselves listed on their State Government websites, and found specifically, Florida and North Carolina lacking. Feedback from New Jersey advocates was encouraging, but not enough for us to move one state over. Despite recent landmark legislative reforms mandating insurance companies to cover autism-related services, many states still lack the actual service providers.
What are top places to live for people with autism?
- By Ryan Jaslow
(CBS News) For children and adults with autism, where is the best place to live?
For many Americans with a family member on the autism spectrum, the best place to live is where they can access different educational, medical and recreational resources without having to drive to another city or state.
In 2011, nonprofit advocacy group Autism Speaks conducted a social media survey of 848 members of the autism community from 48 states and Washington D.C., about the quality and accessibility – among other factors – of supports and services where they lived.
The answer for most? Treatment options and support resources, including education and respite care, are hard to come by. Seventy-four percent were unhappy with the autism services in their area, while only 26 percent said they were generally happy.
“These survey results confirm what we hear every day from families – that they are struggling to get their children services that are essential to their development and well-being,” Bob Wright, co-founder of Autism Speaks, said at the time.
Those who were unhappy reported “by very large margins” they had to travel considerable distances – more than an hour – for treatments and services, said medical services were difficult to come by, and noted that few, if any, recreational services were available locally.
Across the board, respite services were lacking in all areas. Respite care is temporary “relief” for primary caregivers, in which trained professionals can step in, allowing parents to increase their social and emotional well-being. According to Autism Speaks, parents often sacrifice their own health to meet the care-giving needs of their children – which are plenty when it comes to doctor’s appointments, school issues, and legal battles, among other factors.
The majority of respondents said educational services were available in their community, but there was an inconsistency in quality for some areas. Among people who responded positively when asked of local educational services, less than a quarter those services were hard to obtain. For families generally unhappy with their local autism resources, an “incredible” 83 percent described difficulties, such as they couldn’t find specialized experts to best place their child, needed to change schools or districts, or had to resort to expensive legal action.
Which places fared worst?
Texas, Virginia, Tennessee, Ohio, Florida, Michigan and California had the most negative responders.
The top 10 metropolitan areas according to members of the community were: The greater New York, Los Angeles, Chicago, Cleveland, Philadelphia and Boston, Northern New Jersey, Minneapolis/St. Paul, Seattle and Milwaukee
This year’s survey is not due out until the fall, but Peter Bell, executive vice president of programs and services at Autism Speaks, told CBS News he doesn’t anticipate big changes for 2012’s survey.
“Sadly the environment for autism hasn’t changed dramatically, and certainly the same kinds of things – including more respite services, recreational activities, helping our children feel part of those communities, and education” are still issues for families, he said.
Families still need to fight in many cases to get appropriate education for their child’s needs. One of the findings was people who can access educational services can be more satisfied.
“In every community and market – even in the ones where people are satisfied – a lot of them still had to work for it.”
Bell told CBS News he is the father of a 19-year-old son with autism, and despite having lived in three of the top 10 metropolitan areas on the survey, he’s still had to travel to different parts of the country for services.
“This is an issue that almost every family runs into,” Bell said. “Something that doesn’t’ cost an arm and a leg, and doesn’t have a whole lot of travel demands.”
Has anything changed for families since last year’s survey?
Since last year’s report, five more states have passed autism insurance reform laws, including New York and California – states with metropolitan areas featured on last year’s survey. The laws require insurers to provide behavioral treatments that are often required for autism.
Autism Speaks operates the largest database of resources for parents in the world, Bell said, constantly updated by members of the organization in the field or when parents bring new services to the organization’s attention. With more than 50,000 resources available, ranging from early intervention programs to pediatricians to even a local barber who has experience cutting hair of kids with autism.
- Empire State Building, JFK Tower Honoring World Autism Awareness Day (newyork.cbslocal.com)
In life, all things are not black and white. ” There are grey areas in between,” says Phyllis Kuhn.
Her son David was born with autism. It’s the grey part of a black and white world.
But what is black and white and beautiful is what David can do on a organ keyboard. His mother says, ” I get tears in my eyes and I’m not a person who cries easily. Who would have ever thought this would happen?”
Because of his autism, David has always had problems communicating with others. Through music he has found a way to speak to others.
Phyllis Kuhn never lost faith seeing her son struggle with autism. “I don’t blame God, things happen. Maybe it was for a reason.” She see’s his musical talent as a gift.
The license plate on David’s car says it all, ” R – gnist.” Music has given David both pride and purpose.
I received an email this morning from The Autism Action Coalition. Here are the primary points:
New Autism Rate: 1 in 88
Rumors are swirling that the federal government will release this Friday the next round of official autism prevalence statistics and the news will be grim, the “official” autism rate is expected to be 1 in 88, up from 1 in 110 in 2010, which was up from the 1 in 166 rate in 2008. Given the 4 to 1 ratio of boys to girls, the rate for boys is probably in the neighborhood of 1 in 48. The autism rate has doubled in four years. This is a public health catastrophe.
The federal autism research budget is the same now as it was in 2007. That means we are spending less for every case of autism now than we were five years ago.
The federal budget has increased by a trillion dollars a year since 2007, rising from $2.8 trillion to $3.8 trillion. That means we are making proportionally less effort on autism now than 5 years ago.
The following link is a “Take Action” button which will take you to a standardized letter which you can customize and send to your Senators as well as President Barack Obama:
Also, this from www.Salem-News.com:
CDC to Announce New Autism Rate of 1 in 88, and Believes CDC Likely to Declare ‘No Public Health Emergency’ and ‘No Epidemic’
Special thanks to: bloggingforautism.com
(WASHINGTON DC) – This week, the Canary Party expects CDC to announce a new autism prevalence rate of 1 in 88. As boys are diagnosed with autism at four times the rate of girls, this translates to 1 in 48 boys. That new rate would be an increase from the previous 1 in 110 reported two years ago by the CDC’s ADDM (Autism Developmental Disabilities Monitoring) Network. This would only be the latest uptick in the autism rate reported by CDC, as the disorder was diagnosed in 1 in 10,000 in the 1960s, and the rate was virtually zero before 1930.
The Canary Party also expects federal health authorities to continue to downplay the seriousness of the skyrocketing autism rate, just as they have done for the past two decades since the rate began rising dramatically. Canary Party Chairman and autism father Mark Blaxill, drawing on his own experience working with federal agencies on autism for many years, commented, “No matter how high the autism rate soars, the CDC’s continued denial of an autism epidemic is certitude comparable to death and taxes.”
History shows us that Polio was called epidemic when the rate was only one in 2,700. The American Academy of Pediatrics recently called trampoline injuries epidemic, even though that rate was only about one in 1,200 children for the year the those injuries were reported (1996). By these measures, The Canary Party holds the position that autism should have been declared an “epidemic” many years ago. Some have offered the excuse that only infectious diseases can be called epidemic, but as the CDC has announced that obesity is epidemic in the U.S., the Canary Party believes that this leaves the agency with no good explanation for failing to characterize autism as such.
Ginger Taylor, Executive Director of The Canary Party, echoes the questions that autism parents have been asking for years: “How did we go from one in 10,000 children born 50 years ago being diagnosed with autism to 1 in 88 diagnosed today? Why do the Centers for Disease Control refuse to call the avalanche of autism diagnoses in the U.S. anything more than an “urgent public health concern?” Why is the federal agency downplaying a national emergency with special wording created just for autism – Urgent Public Health Concern – a label that is not used to describe any of the thousands of other disorders and conditions the agency tracks? When dozens of published research papers and multiple congressional hearings have shown that the primary causes of autism are environmental, and include vaccines and their components, why has CDC failed to offer any advice to new parents on how to decrease the chance of a child developing autism? Why has CDC chosen not to even attempt to identify which children are the subset vulnerable to these environmental exposures so that they can be handled with greater care?”
Taylor further said, “We hold the CDC accountable for failing to warn parents about the risks of these exposures, and especially for CDC’s own bloated, one-size-fits-all vaccine schedule – which exploded in the late 80’s after vaccine makers were indemnified against litigation by Congress.”
Canary Party member Lisa Goes added, “The vaccine schedule – never tested for safety as a whole – is a vast, uncontrolled human experiment on a generation of children.”
The Canary Party calls on Americans to demand that federal health authorities call this what it is, an autism epidemic, and to demand that government take action to make our air, water, foods, medicines and vaccine program safer. Please contact your legislators and President Obama. www.usa.gov/Contact/Elected.shtml
Please spread the word and urge your legislators to take action to protect and work for the benefit of all children on the Autism Spectrum.
- New CDC Autism Rate: Expected to Increase to More Than 1 in 100 (beyondautismawareness.wordpress.com)
While this news is certainly startling, it is not unexpected, in my opinion. This fuels my drive as a parent of an Autistic child, and advocate for Autism Awareness to spread the word as loudly and frequently as possible to reach as many people, especially legislators, to become involved in Autism-related efforts. In the span of 8 years since Mike was diagnosed, I have seen this rate increase from 1 in 150 to this prediction of more than 1 in 100. Spread the word. Get involved for yourself and your loved ones.
New CDC Autism Numbers Coming Soon; Rate Increase to Over 1 in 100 Expected
Autism was reported as a new condition in American children born in the 1930s.
The CDC – photo courtesy: bellsouthpwp.net
(WASHINGTON DC) – Officials at the Centers for Disease Control have promised to release their most recent autism prevalence numbers sometime “in the spring,” which officially begins tomorrow. Most likely the release will give rates from the 2008 report of the Autism Developmental Disabilities Monitoring (ADDM) Network on eight-year-old children born in 2000.
Over two years ago the CDC reported autism rates of 1 in 110 in children born in 1998. Early reports indicate that rates for children born in 2000 have risen above 1 in 100. According to sources, the new rates could be announced as early as next week.
Chairman of the Canary Party Mark Blaxill said, “We’ve been waiting for years to get these numbers from the CDC, but most of all we’ve been waiting for health authorities to face the reality of the American autism epidemic. Something terrible has happened to a generation of American children and the CDC refuses to declare autism a public health emergency.”
In order to assess the new report, the Canary Party urges the public to consider the following:
• These statistics are many years behind the current situation. Since the onset of autism begins in infancy, before three years of age, these statistics are effectively a decade old.
• Utah, one of the ADDM reporting sites, has already published their results for the 2000 birth year. The risk for autism in eight-year-olds born in Utah in 2000 was 1 in 77. This is a 73% increase from Utah’s 2002 ADDM statistics, which showed a rate of 1 in 133 for children born in 1994.
• Autism was reported as a new condition in American children born in the 1930s. For many years reported U.S. autism rates were low, not much higher than 1 in 10,000. Starting with children born around 1990, autism rates began exploding. Some authorities attribute this increase to the inclusion of Asperger’s syndrome in official diagnostic criteria, but Asperger’s syndrome only makes up a modest portion of total autism cases and cannot explain such sudden and large increases.
• The ADDM Network has never reported breakdowns within the autism spectrum, making comparisons to past prevalence reports difficult. Without the ability to separate rates of Asperger’s syndrome from other autism categories, the CDC has failed to address the impact of Asperger’s syndrome on autism time trends.
• The ADDM Network reporting sites have also changed frequently, making comparisons even with the CDC’s own autism reports difficult. High prevalence sites like New Jersey were removed from the ADDM Network and lower prevalence states like Florida were added. These shifts make the increases appear less alarming than they truly are. Nevertheless the last CDC report showed an increase of 57% in just four years.
• The ADDM Network reports begin with children born in 1992, so they miss the crucial inflection point in autism rates around 1990. Yet the CDC’s own statistics from New Jersey, an early ADDM site, show rates for autistic disorder rising from ZERO in the 1988-89 birth years to 1 in 128 by 1993.
The only plausible explanation for these rapid increases is a change in the environment affecting millions of American children. A recent study on California twins — the largest autism twin study ever conducted — reported that the environment explained over 60% of autism causation, and by some estimates over 90%.
The Canary Party calls for all Americans to watch for the new autism rates and demand action from public health authorities.
On Thursday, March 15th (the Ides of March) our school district held another seminar on autism. The topic this week dealt with the siblings of a child with autism, and how they deal with their situation. With more children being diagnosed with autism, and many within a family where several children are neuro-typical, it’s raised some questions on how these children feel about their sibling with autism taking more time and attention from their parents.
We started with a panel of siblings, and they fielded questions about what they were expecting, and how autism has influenced their lives. And then we had a presentation from Utah Family Voices about how siblings have expressed their concern. The presentation was very informative, and doesn’t just apply to siblings, but for any children that feel “neglected” by additional attention being given to a child with autism.
One question that came up was how having a sibling with autism affected dating. Most of those who answered the question said they haven’t seen a problem, as they tend to look for someone that is more compassionate and find their sibling as a perfect test. Others have said that it has changed their dating experiences, but often they were not “serious” relationships that were affected. What the director from Utah Family Voices shared is that most siblings want to find someone who is understanding of their family, including their sibling with autism, and want someone that is supportive. Personally, having grown up with a brother who was undiagnosed but has Aspergers, I found that he was a very good judge of character in many of the young women I was dating.
The Role of Caregiver
This was a big one: the Role of the Eldest Child in taking on responsibilities of the Parent when they are gone. The reality of many children on the spectrum is their dependence on others to live. They require care at some level, and parents will not generally outlive their children. It’s difficult for many parents to think about that eventuality, but it is nonetheless true. And often, parents assume that their oldest child will be willing to take care of their sibling once they are gone. For the sibling, they often resent this assumption.
Of course, this doesn’t change the reality, and many siblings just deal with that requirement. But the time to talk about the responsibilities and how it will affect their lives is early on: they need to know when they are in their early teens what is expected, and what they want to do with their lives. It helps them have that responsibility in mind, and perhaps give them the chance to decide if they want to be a care-giver, or just a support. It’s a tough discussion to have for all concerned, but one that needs to be had as early as possible.
Explaining Autism to Friends, Family, and Strangers
This was a big topic as well, because it’s something with which we have all had to deal at some point or another. It was focused on friends of a sibling, but it became more of a discussion on how others perceive autism, and how we can educate them. autism is a genetic rewiring of the Brain that we are just starting to understand. As such, those with autism behave differently than others, but don’t have any outward differences that distinguish them as “special needs”. During the 1960’s, it was believed that autism was the result of bad parenting, and that has somehow stuck. So we talked about how we can educate others to the realities of autism.
There have been a number of different responses. Some talked about cards with details and websites that explain autism listed. Others talked about various t-shirts that exist that say “I have autism, be nice to my Mom”, or “You can stare all you want, but I still won’t acknowledge you”, or my personal favorite, “If you stare hard enough, you may cure me, and then we can work on your social issues”. We found that the best response to the criticism of autism is to handle it with humor, and then find ways to educate others. For family, often it’s a good documentary on autism (found on most PBS stations, websites, and video stores), or a news piece. For friends, the News or websites that outline what autism is, and how it affects the lives of those around them. For everyone else, websites that outline research generally helps, particularly for those healthcare and education professionals that seem skeptic as to the realities and extent of needs children with autism have. That is where the cards come in handy.
Siblings often get angry, resentful, and frustrated that their lives are changed from “normal” because of a child with Autism. And while we would like to think that our children are completely supportive because they understand how important it is we help our children with special needs, they have a natural reaction of wanting more attention. They therefore find ways to act out, sometimes even to the extent of declaring their hatred of their sibling.
What we as parents need to understand is that our children are reacting normally, and that these feelings are real and need to be discussed. Sometimes our children will not want to discuss their resentment, because they know it’s wrong and feel guilty about those feelings. But while they may not be what we expect, they are still very real feelings that need to be addressed.
How do you know your child is resenting their sibling with autism? They will often react in one of the following ways: Mimicking behavior: they will start to act like the child with Autism in hopes of getting the same sympathy and attention. Rebellion: common for many children wanting attention, rebellion against their parents is a way of getting attention, even if it’s negative attention.
Vocal about Resentment: often, particularly the younger children, will declare their “hatred” of the other child. The younger they are, the more truthful they will be in the moment. It doesn’t mean they really hate their brother/sister, but they may hate the situation for the moment.
So what can we as parents do to help our children deal with their feelings?
Acknowledge their feelings: let them know they are important by letting them vent. Sit down and talk with them about their feelings, and let them be heard. It may not be immediate, but it needs to happen without any judgement. Your children need to feel comfortable coming to you with these feelings, even when they know it’s wrong (Especially when they know it’s wrong!).
Don’t use autism as the reason: Never tell your child “We can’t go because your brother/sister has autism”. That immediately breeds resentment. Instead, talk to them about limitations, and ask them what they think would happen if their brother/sister were put in that situation. How would they feel? How would their brother/sister feel? How would others react? How would the family feel?
Keep it in perspective: make sure your children understand the impact that special needs place on everyone’s life, including your own. They need to know what you are experiencing as well, to put their feelings in perspective.
Not equal, but fair: Often children feel they are not getting equal treatment, and think it’s not fair. The story that the director from Utah Family Voices shared was a child who felt they were being neglected because their parents were always having to take care of her brother with autism. Her parents turned to her and, after acknowledging her feelings, pointed out that she was more than welcome to take care of her own brother. At that point, she realized all that her parents managed for her, and she didn’t want it. She realized that it may not be equal, but it was fair to her.
We as parents worry a lot about our children, whether they have special needs or not. The good news is that most siblings of a child on the spectrum tend to be more compassionate people, and go into the compassionate fields like teaching and medicine. As such, they look for those who are like-minded, regardless of with home they think they are in love at the moment.
If you have a child with autism or Asperger’s syndrome (AS) you probably have come across acronyms that you don’t understand. I have compiled a list of some of the most common acronyms to help you better understand when talking with medical professionals and educators.
AAC – Assistive Augmentative Communication – communication using a picture board, recorded messages and other non-verbal communication methods
ABA – Applied Behavior Analysis – analysis and tracking of behavior to help develop strategies
ABC – Applied Behavior Checklist – checklist used during applied behavior analysis
ADA – Americans with Disabilities Act – Federal law protecting the rights of those with disabilities in the workplace and other institutions who receive federal funding
ADD – ADHD – Attention Deficit Hyperactivity Disorder – a neurobiological disorder characterized by inattention, hyperactivity and impulsivity
ADOS – Autism Diagnostic Observation Scale – test used by medical professionals to screen for autism
AIT – Auditory Integration Training – a type of therapy used to improve symptoms of auditory processing problems
AS – Asperger’s syndrome – An autism spectrum disorder characterized by significant difficulties in social interaction, repetitive behaviors and special interests
ASA – Autism Society of America – a national advocacy organization
ASD– Autism Spectrum Disorders – a umbrella term used to describe the five types of autism disorders, from mild to severe
ASL – American Sign Language – a language using sign patterns consisting of hand gestures and shapes
CARS – Childhood autism rating scale – test developed by TEACCH to diagnose autism
CHAT – Checklist for Autism in Toddlers – a checklist used by General Practitioners at around the age of 18 months to screen for autism
DAS – Developmental Apraxia of Speech – a motor speech disorder
DD – Developmental Disabilities – general term used for all developmental disabilities, including autism and Asperger’s syndrome
DH – Developmentally Handicapped – cognitively impaired or intellectual functioning significantly below average
DSM – Diagnostic and Statistical Manual – extensive manual published by the American Psychiatric Association listing all mental illnesses with diagnostic criteria
EEG – Electrocephalogram – a test recording brainwaves used to test and identify seizures
EI – Early Intervention – Services provided by counties and states beginning at birth and continuing until the age of 3
FAPE – Free and Appropriate Education – educational, special educational and related services provided to students at no cost based on state and federal laws
FC – Facilitated Communication – communication through a keyboard or other device to communicate with the help of a facilitator supporting the hand or arm
GARS – Gilliam Autism Rating Scale – a rating scale used to diagnose autism
HFA – High Functioning Autism – individuals who are academically capable and verbal but still have symptoms of autism
IDEA – Individuals with Disabilities Act – federal law mandating a free and appropriate education for all students with disabilities from the age of 3 up to 21
IEP – Individualized Education Plan – a written document written by parents and educational professionals detailing services needed to help a child with disabilities in school
IFSP – Individualized Family Service Plan – A written plan used in early intervention services
LD – Learning Disabled – classification of a number of conditions which result in difficulty learning
LRE – Least Restrictive Environment – used in educational purposes, a child is entitled to be educated in the least restrictive classroom
MR – Mentally Retarded – a term referring to cognitive impairment along with deficits in adaptive behaviors
NICHCY – National Information Center for Children and Youth with Disabilities – a national information source for children with disabilities
NIH – National Institutes of Health – U.S. medical research center
NT – Neurologically typical – term used to refer to those individuals who do not have autism or AS
OCD – Obsessive Compulsive Disorder – an anxiety disorder characterized by compulsions and obsessions
ODD – Oppositional Defiant Disorder – disorder characterized by ongoing uncooperative, defiant or hostile behaviors
OT – Occupational Therapy – therapists who may work with children with autism using play therapy, find ways for coping with sensory processing disorder and other daily activities
PDD – Pervasive Development Disorder – a group of five disorders characterized by delays in development of basic functioning
PECS – Picture Exchange Communication System – a form of communication using pictures and symbols
PEP or PEP-R – test to assess for autism and provide information on treatment strategies
PT – Physical Therapy – therapy for those with limited abilities to move and perform functional actiities
RDI – Relationship Development Intervention – a therapeutic approach where therapists and parents take on the role of coach
SI – Sensory Integration – therapy to help those with sensory difficulties better manage these issues
SLP – Speech Language Pathologist – a speech therapist with at least a master’s degree and who is certified and licensed
SPD – Sensory Processing Disorder – commonly seen disorder in children with autism spectrum disorders
SPED – Special Education – special education services provided by schools
TEACCH – Treatment and Education of Autistic and Related Communication Handicapped Children – An educational approach developed for children with autism
Medical Abbreviations Dictionary: http://www.medilexicon.com/medicalabbreviations.php
“Medical Acronyms, Abbreviations and Symbols,” Date Unknown, Staff Writer, The University of Memphis: http://www.memphis.edu/hss/clnt/pdfs/MS-ClinicalNutrition-MedicalTerm.pdf
“Some Common Abbreviations,” Date Unknown, Staff Writer, MedlinePlus: http://www.nlm.nih.gov/medlineplus/appendixb.html