Thursday, March 27, 2014

1 in 68

1 in 68. Speechless.


Autism now affects 1 in 68 children; 1 in 42 boys

Posted by on Mar 27, 2014 in Featured | 0 comments

Autism now affects 1 in 68 children; 1 in 42 boys

Autism Groups React to New CDC-Reported Prevalence of 1 in 68 Children
WASHINGTON, DC (March 27, 2014)—Today, the U.S. Centers for Disease Control and Prevention issued the newest autism prevalence statistics.  For children born in 2002, the prevalence of autism was 1 in 68; 1 in 42 boys.  Almost 60,000 US 12 year-olds likely have autism.  Thirty years ago, autism affected 1 in 2,500 children; there has been a 37-fold increase.
Katie Weisman of SafeMinds stated, “Broader criteria and awareness cannot account for this magnitude of increase.  The federal government continues to spend millions of dollars ineffectively and ‘potentially duplicatively’ according to a recent GAO report.  We need to identify environmental triggers for autism, prevent them, and develop effective treatments.”
Holly Bortfeld of TACA stated, “The federal government has spent $1.6 billion on autism since 2006, but the money is not helping those affected in meaningful ways. We need to improve medical treatment for the many co-occuring health concerns of individuals with autism and address the wave of students who are aging out and entering an adult world with no plan for them. ”
The Autism Policy Reform Coalition (APRC) is advocating for changes in the U.S. Government’s response to the autism crisis and represents a constituency of over 100,000.  The APRC is calling for significant changes in the Combating Autism Act, which is to be reauthorized by Congress this year.
“Since 2011, 44 U.S. children with autism have died after wandering away from a safe environment,” stated National Autism Association President Wendy Fournier.  ”Our federal government must recognize these deaths, and the urgent needs of our most profoundly affected population. They suffer silently in pain from untreated medical issues; they are abused, bullied, and may be at increased risk of suicide. Their deaths and injuries are preventable through an appropriate federal response, which our coalition is dedicated to securing.”
The AUTISM POLICY REFORM COALITION includes:  Autism is Medical, Defending Academic Integrity and Research Foundation, Generation Rescue, National Autism Association, SafeMinds, Talk About Curing Autism, and The Thinking Mom’s Revolution.  Its mission is to educate public officials and to encourage legislation that will make a measurable difference in the lives of the persons with autism and their families.
To view the report in it’s entirety, click here.

Monday, March 24, 2014

Parenthood Magazine's shout out to ABA

Thank you, Parents Magazine, for talking about ABA and warning parents about alternative treatments.


Autism Therapy and Treatment Options

No two kids on the autism spectrum are the same, and often, neither are their treatments. Here's what you need to know about finding the right approach for your child.

Autism Spectrum Disorder (ASD) has two main hallmarks: difficulty with communication and social interactions and a tendency toward restricted, repetitive patterns of behavior and interests. But no two children on the spectrum are alike, which can make an ASD diagnosis particularly overwhelming. It can be hard to understand which aspects of your child's behavior and development are part of her ASD and which are typical for her age or just idiosyncratic parts of her personality. You may also worry that your child's issues are too severe or ingrained for treatment to make much difference, but it's important not to lose hope. "With good treatment, many and increasingly more children will get better," says Parents advisor Fred Volkmar, M.D., director of the Child Study Center at Yale University School of Medicine. "By that I mean they will grow up to be self-sufficient adults who can live independently. They may never be problem-free, but we see many children do very well."
If your child has been diagnosed with ASD, you'll need to find an autism specialist who can partner with you in your child's care. That specialist may be a neuropsychologist or neuropsychiatrist, a clinical psychologist or psychiatrist, or a developmental pediatrician. "The key is that he or she has special training in understanding the needs of kids on the spectrum," says Michael Rosenthal, Ph.D., a pediatric neuropsychologist who specializes in autism at the Child Mind Institute in New York City. Your pediatrician should be able to make referrals; you can also contact the Autism Response Team at Autism Speaks for help finding a qualified specialist in your area. Once you find the right therapist, he or she will work with you and your child to devise a treatment program that will look something like this:

Find the Right Behavioral Therapy

"When we see a newly diagnosed 2- or 3-year-old, our first goal is to get him into pretty aggressive early intervention known as applied behavioral analysis [ABA]," Dr. Rosenthal says. "There is a tremendous amount of research to show that this is the way to go." An ABA-trained therapist will work with your child for 25 or more hours per week, systematically encouraging desired social and communication behaviors and actively teaching the kind of social interactions that other children learn intuitively. The list of goals may include improving attention span, building social interaction skills, and developing verbal and nonverbal communication skills.
Depending on your child's specific needs and progress, other evidence-based approaches might be used. These include pivotal response therapy (PRT), which is derived from applied behavioral analysis; the Early Start Denver Model approach, known for its developmental curriculum of skills; or the TEACCH approach (Training and Education of Autistic and Related Communication Handicapped Children). Many children with ASD also benefit from occupational, physical and speech-language therapies, and others need a kind of hybrid approach, in which therapists choose from a variety of methods to meet their needs. "With children on the milder end of the spectrum, we often find that all they need is a little bit of speech-language therapy to help with social skills," Dr. Rosenthal notes. "Other kids really need the total treatment package."
It's important to understand that most public school systems offer only one kind of autism program. "It varies tremendously by school district whether your child can be in an ABA-based classroom or one with a developmental approach," Dr. Volkmar says. "We run into problems when a kid is diagnosed but the only program available isn't a good match with his needs." If you think your child's current therapeutic approach isn't working, talk to your specialist about the best strategy for switching to something different.

Consider Medication if Appropriate
"Medication can't fix autism itself but it can be useful if a child has some associated problems," Dr. Rosenthal says. For example, some children with ASD also experience high levels of anxiety, inattention, or hyperactivity; medications are often prescribed to help with those issues, which can otherwise interfere with their social and behavioral progress. "When medication can help get the symptoms of the associated problem under control, we often see a big jump in a child's progress," Dr. Rosenthal notes.

Be Wary of Alternative Treatments

Diets, vitamins, and chelation (a process that is said to remove mercury or other heavy metals from the body) have all been touted as treatments for ASD. But "none of these have any reliable science behind them," Dr. Rosenthal says. And some (particularly chelation, which can cause kidney or liver damage) can be very dangerous. If you want to pursue an alternative therapy for your child, be sure to consult a qualified physician first.

Will My Child Recover?

It's important for parents to understand that autism is often a lifelong condition, without any known cure. But good behavioral therapy is extremely effective, especially when it's started as early as possible. "It's not a question of whether a child with ASD can make progress--it's a question of how much progress," Dr. Rosenthal says. In 2013, researchers at the University of Connecticut co-authored a landmark study published in the Journal of Child Psychology and Psychiatry, which showed that some children with ASD can achieve "optimal outcomes." "The 34 children identified in this study were making friends, doing well in school, and generally functioning well," says Dr. Rosenthal, one of the study's co-authors. "They had effectively moved off the spectrum. It's too soon for us to say why these children did so well, but early behavioral intervention does appear to be key." Further research is needed to replicate the results in a bigger population and understand more about what worked so well for these children. Dr. Volkmar, who was not involved in the study, notes that the term "optimal outcome" is subjective: "I know one college-aged boy who by many definitions has 'moved off the spectrum,'" he explains. "But he also can't do his laundry, so we have a long way to go before he's fully functional in all areas of life." But Dr. Volkmar, too, wants parents to stay optimistic. "I have seen many young children make tremendous progress," he says. "There are so many reasons to be hopeful."

Friday, March 14, 2014

Flashback Friday 2005 (they grow so fast)

I was going to post a picture of Joey at 5 months old in his St. Patty's Day pajamas, but why? He did look cute but that day has little meaning to me.

Instead I selected a picture from June 2005.

This picture of Joey shopping with me always reminds me of how lucky I was that I worked for a company that allowed me to switch to working nights so that I could spend everyday with my sweet Pepper. I wish I could get those days back. Being home with him this week reminds me of those days and how time goes so fast. The time we spend together gets less and less with each passing year. I am so lucky to be his Mom. For those Moms home with their babies, enjoy every "first," every giggle, every moment you can. Before you know it, they will be saying "I'm Italian, deal with it."

Monday, March 3, 2014

Losing the Autism Dx - A doctor's persepective

It sounds like Joey isn't protected from having to get a reassessment, but that's ok, because his school doesn't acknowledge his dx anyway.


Why Are Children Losing Their Autism Diagnosis?

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Why is this happening? Did their autism resolve? Did the parents ask for a second opinion?
In many of these cases the answer to all of these questions is a resounding "no" -- the children didn't change one little bit. What changed was the criteria for diagnosing autism, which is now based on the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This is the guidebook that is used to diagnose a range of different conditions including depression, bipolar disorder, and schizophrenia. There has been some debate as to whether the use of DSM-5 will reduce the number of people diagnosed with autism. Autism Speaks, a prominent autism advocacy group, has established an online survey that is beginning to discover that people with autism are being "undiagnosed" after having been reevaluated under the new criteria.
So why are people worried about losing their autism diagnosis?
A diagnosis of autism helps to ensure that special educational and social opportunities are provided to that individual; additionally, health care insurers are under increasing pressure not to deny coverage to people with an autism diagnosis. The reality for many people is that the loss of their autism diagnosis takes away many of these very helpful, sometimes crucial resources. I should emphasize that the gold standard for diagnosing autism remains a specialist clinical assessment. Doctors and other clinicians may very well have different opinions. Blood tests, brain scans, or psychological testing cannot make or rule out autism.
A little caveat
In order to prevent every child from having to undergo a reassessment, and with the knowledge that losing an autism diagnosis can impact health care and educational resources, a clear caveat was placed into the DSM-5. A stipulation that I feel many people with autism and their caregivers don't know about. This caveat can help protect families from being forced to undergo a "reassessment" on demand from any organization. The DSM-5 clearly states that anyone with an established autism, Asperger's, or pervasive developmental disorder that was diagnosed prior to release of DSM-5 should continue to be given the new diagnosis of autism spectrum disorder. This becomes especially important if there has been no clinical change in the child. It doesn't mean that the parents cannot seek out a second opinion, or that if their child develops new symptoms then other conditions cannot also be diagnosed.
As a physician, I realize that a fundamental part of my work involves moving past a diagnosis, and trying to make my patients lives better. While some children with autism may also have psychiatric or medical conditions that I can help treat, the vast majority benefit hugely from suitable educational and social skills resources. The reality is that these resources are so tightly tied to an autism diagnosis, that "undiagnosing" these children would be detrimental to their longer term outcomes. Our health care and educational systems struggle to help children that require assistance but lack a diagnosis.
Picking and Choosing
I think it would be duplicitous for any organization to pick and choose the components of DSM-5 that one would adhere to when looking at a child with a possible autism diagnosis. We cannot on one hand use the criteria to attempt to "undiagnose" a child with autism (and in the process put their educational, social, and healthcare services into turmoil), while on the other hand deciding to skip over the explicitly stated caveat that a previously made autism diagnose should persist.
I understand, and many researchers have pointed out to me, that grandfathering these autism diagnoses is scientifically messy at best. It may take decades to "clean up" the science; in the meantime, it's my duty to advocate for my patients.
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