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A Taste of Autism in the East

July 8, 2013 in Special Education Articles by Jess

There’s a hair roller stuck with a piece of Velcro to a piece of card on the wall. Alongside it is a separate strip of cardboard with a small card attached with Velcro, on which is a picture with the name of what’s on the image hand written underneath. These two strips of cardboard demarcate the gap between the least and most able students in this part of the autism school in Beijing, China.

I’ve taken a short, dusty walk from the original Stars and Rain autism school to this building which teaches around 6 students aged 13-18 at any one time. When I arrive there are only five students, four adolescent men and one female. Chinese Special Educational Needs teachers, who have little in-service training and still less status for their work, use TEACCH (the Treatment and Education of Autistic and Communication Related Handicapped Children) methods and visual timetabling to achieve goals and develop communication. On the day I visit, there are two teachers and three German volunteers whose internships program sees them stay for a year in the capital’s suburbs, working daily in the upper school and sleeping in local accommodation. Read the rest of this entry →

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The Affordable Care Act and Autism Insurance: A bait and switch?

July 7, 2013 in Special Education Articles by Jess

The rate of autism is on the rise. Current estimates about the prevalence of the condition are that it affects one out of every 88 children. Among boys the rate is even higher at one out of every 54. It’s so bad that the advocacy group Autism Speaks has called it an epidemic.

For parents of autistic children the most effective option for treatment has long been Applied Behavioral Analysis (ABA). Numerous studies have shown the effectiveness of ABA both in the long and short term. The therapy helps children learn the essential life skills that help them succeed well into adulthood.

However many families face the issue of how to afford such treatment. Daily sessions can cost anywhere from $20,000 to $100,000 each year, and the therapy is not always covered by insurance. Read the rest of this entry →

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Using Ecological Assessments to Set Meaningful Goals for ABA Interventions

January 14, 2013 in Special Education Articles by Jess

When professionals develop ABA intervention programs for students with ASD and other disabilities, they use many different approaches when selecting goals.  Some use criterion-referenced assessment tools such as the Assessment of Basic Language and Learning Skills- Revised (The ABLLS-R) or The Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) to set intervention goals.  Others use informal assessment procedures such as interviews with students, caregivers, and teachers, checklists, and informal observations to set goals for ABA interventions.  What professionals do not typically use nearly enough are ecological assessments to set goals for ABA interventions. Read the rest of this entry →

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Embedding an ABA Intervention During Read Aloud

September 4, 2012 in Special Education Articles by Jess

It is well documented that students with ASD benefit from ABA interventions.  It is also well documented that children with disabilities (including students with ASD) benefit from inclusive classroom experiences with the necessary services and supports integrated into the classroom to improve learning outcomes.  When students with ASD are included in general education classrooms, ABA interventions can and should be embedded into as many different instructional and non-instructional activities as possible to provide the intensity of intervention they often need to meet their social communication, behavioral, and academic needs.  Many teachers consider ABA as a 1:1 intervention that can only be implemented in therapeutic settings.  However, as I discuss in my books Bringing ABA into Your Inclusive Classroom and Bringing ABA into Home, School, and Play for Young Children with Autism Spectrum Disorders, ABA interventions can be implemented within everyday routines and activities across home, school, and community settings. Read the rest of this entry →

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Thoughts on Independence

August 29, 2012 in Special Education Articles by Jess

The overriding goal for most students with disabilities is to become independent.  Very often, IEP goals include the specification that skills should be demonstrated “independently.”  We use this word a lot in special education, but it sometimes seems as though there are different interpretations.

To me, independent means without prompts or other assistance.  It means that a skill is performed from start to finish, with no cues or guidance beyond those normally available to anyone performing this skill.  To take a simple example, if all of the children in the classroom take out their reading books upon the teacher’s instruction “Please take out your reading books,” then that is what independent looks like for my student who may have autism, ADHD, or another challenge.  It is not independent if my student takes out his reading book only after his one-to-one aide has repeated the instruction, or if he opens and reads from the book but the teacher took it from her own desk and handed it to him. Read the rest of this entry →

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Inclusion Isn’t Just for “High Functioning” Kids with ASD

May 30, 2012 in Special Education Articles by Jess

It seems that there is a popular belief system that only “high functioning” kids with ASD can be served in inclusive classrooms. Many stakeholders including parents of kids with ASD, special education teachers, general education teachers, and administrators share this belief. I am going to go out on a limb here and challenge those of you who believe that inclusion is only for “high functioning” kids to read further and see if I can persuade you to think about it differently. Regardless of ability and functioning levels, all children should have opportunities to be included in general education classrooms to learn alongside their typically developing peers. The learning opportunities that take place in general education classrooms cannot be replicated in self-contained special education classrooms. The question that often comes up is this: “How do you know when you should place a student with autism (or any other disability for that matter) in an inclusive classroom?” While my first instinct is to say, “All kids should be included in general education classrooms,” I know that answer doesn’t cut it. Read the rest of this entry →

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Managing Special Needs in a Big Family

May 1, 2012 in Special Education Articles by Jess

Hi, my name is Mac and I am a stay at home mama of 5 boys, we live in St Louis, Mo. My husband, “Big Daddy”, has 2 boys- Thing 1, a 17 year old bipolar rebel, and Thing 2- 16 with ADHD. I have 3 of my own. An 11 year old, Walter, who is also ADHD. Alexander the Great, 9, has severe autism and ADHD (since, you know, autism never travels alone). Goofy is the baby at 5 (and our last dose of ADHD). Read the rest of this entry →

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The Inspirational Teacher Series – Nicole Eredics

April 30, 2012 in Inspirational Teacher Series by Dennise Goldberg

We have started a weekly feature on Special Education Advisor called the “Inspirational Teacher Series“. Our goal is to help SEA readers understand the hard work and dedication educators put forth every day. We also want to highlight the positive experiences of educating our students with a disability.

Today is our very first installment of the Inspirational Teacher Series and I couldn’t think of a better person to start with than inclusion specialist, Nicole Eredics. Read the rest of this entry →

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What Autism Awareness Should be About

April 12, 2012 in Special Education Articles by Jess

Autism Awareness Day has come to a close. The blue puzzle pieces will disappear from Facebook pages and billboards, the media will focus their attention on other topics of interest, and we will return to business as usual. And business as usual is not OK.

When I first entered the field over twenty years ago, autism was considered a rare condition. When people asked what I did for a living, they often misheard me and thought I worked with “artistic” children. Today, autism is no longer the rare diagnosis that impacts someone else’s child. Our extended families, our neighbors, and our coworkers are now all touched by autism. With 1 in 88 children receiving a diagnosis, the sheer number of individuals with autism heightens awareness in and of itself.

For many conditions, awareness is key because awareness promotes detection, and with detection comes a relatively clear path towards treatment. Take, for example, Lyme disease and many forms of cancer. Better prognoses are attached to early detection. Within a few short weeks of detection and diagnosis, patients typically receive science-based treatment. If their conditions are not detected early, then access to such treatments is delayed and their conditions will likely worsen.

In the world of autism, detection is not the “be all and end all.” We do not just have a detection issue in autism, but also, and perhaps more importantly, we have an intervention issue. It is my hope that the conversation about autism awareness will be broadened to focus upon the obstacles that separate individuals with autism from effective, science-based intervention, and that those that separate their families, caregivers, and teachers from accurate information about autism intervention.

I leave you with 10 ideas about what “autism awareness” should be about.

1. “Autism Awareness” should recognize the need to differentiate effective treatments that are scientifically validated from the plethora of “therapies” and “cures” lacking scientific support. Autism treatment has become a multimillion dollar industry with 400+ alleged treatments and thus, science sadly placed on the back burner. This means that heart wrenching testimonials, surveys that are pawned off as scientific research, and outrageous claims abound, making it challenging for parents to determine the best course of action for their child. The aggressive marketing of these “therapies” and “cures” is absolutely overwhelming for parents who are desperate for accurate information to help their children realize their fullest potential. For most other medical conditions, a provider that disregards proven intervention and uses a fringe treatment may actually be sued for malpractice. Such safeguards do not yet exist for autism treatment.

* Please see our treatment summaries for information about the presence or absence of scientific support for scores of autism treatments at www.asatonline.org/intervention/autismtreatments.htm

2. “Autism Awareness” must recognize the responsibility that we have, as a society, to make sound choices. I use the term “society” given the myriad of stakeholders who make critically important decisions for persons with autism – not just parents, but siblings, teachers, treatment providers, administrators, program coordinators, and tax payers. Decision-making power comes with tremendous responsibility. There are far too many individuals with autism who are not receiving effective treatment, are receiving ineffective treatment, or are subjected to treatments that are, in fact, dangerous. Every minute of ineffective intervention is one less minute spent accessing effective intervention. Every dollar spent on an intervention that does not work depletes resources available for intervention that does work.

* Please see the questions that appear at the end of this article to promote more careful decision making at www.researchautism.org/uploads/roadless.pdf

3. “Autism Awareness” must recognize that available information (and information providers) varies greatly in accuracy. As we know, not all information on the Internet is reliable and accurate. Often Internet information is deemed equivalent in relevance, importance, and validity, to research published in peer-reviewed scientific journals. It is not.

4. Autism Awareness” must include careful and responsible reporting by journalists who fully embrace their role as “public educators” and are committed to the dissemination of accurate information. There are dozens of “miracle cures” and “breakthroughs” for autism that receive widespread media attention, even if they have not been proven effective. Unfortunately, treatments actually shown to be effective typically receive the least amount of media attention. It is hard to imagine that things will improve dramatically for the autism community in the absence of more accurate representations of autism treatment in the media.

* You will find examples of accurate and inaccurate reporting at www.asatonline.org/media_watches. ASAT is undertaking proactive steps to enhance accuracy in media reporting.

5. “Autism Awareness” should recognize the critical need for newly diagnosed children to access effective treatment as soon as possible. We know that early intervention can make a huge difference. We also know that we have a limited window of time to prepare children for the least restrictive setting once they enter public school. The fact that resources allocated early can save a tremendous amount of resources over an individual’s lifespan does not always enter the conversation when evaluating costs and benefits. That must change.

6. “Autism Awareness” should also instill hope for a better tomorrow for those individuals who are not part of the “best outcome” group. With the right treatment, individuals with autism can lead happy and fulfilling lives. Research indicates that interventions such as applied behavior analysis (ABA) can effectively help children and adults with autism realize their fullest potential. The conversation about “cure” often delegitimizes and derails important conversations about how we can help individuals with autism live and work independently, develop meaningful relationships, reduce challenging behaviors that may limit opportunities, access faith communities, and enjoy the array of recreational pursuits that are available within their communities. Those are important conversations to have.

7. “Autism Awareness” must mandate accountability from all treatment providers. Accountability involves a shared commitment to objectively defined targets, data collection, and respect for the scientific method. It is every provider’s responsibility to objectively measure outcomes regardless of their discipline. No one should get a pass on accountability. No one should be permitted to boast claims that they cannot demonstrate through data. In fact, one could argue that providers using interventions that lack scientific support have an ethical obligation to share this fact with their consumers and to exercise even greater caution in predicting and measuring outcomes. Far too often, applications of interventions that lack any scientific support are carried out in a manner divorced from any semblance of objective measurement. That should not be tolerated.

8. “Autism Awareness” must involve recognition that an abundance of clinical research already exists. Too often the plethora of peer-reviewed research that could guide and inform treatment efforts is disregarded altogether. If treatment providers and consumers are interested in published research on diverse topics such as improving conversation skills, promoting academic skills, eliminating pica, or developing tolerance for dental procedures, they can find it. Thousands of researchers have worked hard at publishing their findings in peer reviewed journals and their findings are often overshadowed by a media that practices sensationalism to provide consumers with information about the “next big thing” in autism treatment.

9. “Autism Awareness” should help us identify and overcome the barriers that face our families everyday. Not every child with autism is invited to birthday parties. Not every faith community welcomes families of children with autism. Not every school provides meaningful contact between students with autism and their typically developing peers. Not every community provides recreational opportunities for individuals with autism. The absence of these opportunities is both a function of misinformation about autism and the lack of awareness about the successful efforts of others who have overcome such barriers. With 1 in 88 children being diagnosed, every facet of society would benefit from evaluating what they are doing, what they are not doing, and what they could be doing differently

10. “Autism Awareness” should be about the reality that the hundreds of thousands of children with autism will soon become hundreds of thousands of young adults with autism. We are facing a crisis in the field with a scarcity of services for adults with autism and the absence of a clear strategy for closing the gap between the ever increasing need, and an unprepared supply of resources. It was recently brought to our attention that our website and newsletter did not represent lifespan issues. We have committed to broadening our scope so we are part of an important dialogue about adults with autism.

We all play a role in bettering the lives of individuals with autism and helping their families and supporters become skilled and savvy consumers. Embrace that role with an eye toward identifying what additional steps you can take to become a contributor to important conversations and an even bigger part of the solution.

ASAT is a not-for-profit organization of parents and professionals committed to improving the education, treatment, and care of people with autism. Since ASAT was established in 1998, it has been our goal to work toward adopting higher standards of accountability for the care, education and treatment of all individuals with autism

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Autism in the Age of Technology

April 9, 2012 in Special Education Articles by Jess

As a society, we’ve come a very long way in a very short time with regard to technology. It used to be that you need to have a degree in . . . well, computer science, to understand and use computers. It used to be that computers filled whole rooms. It used to be that the first home-based computers used the family television as a monitor, and stored data on a cassette tape (remember those?). Also, remember that high-pitched whine when you would go online, paying by the minute to access this wondrous new thing called the “world wide web”?

Fast-forward (to hearken back to VCRs) 20 years, and technology is everywhere. One single device can be used to order groceries, make phone and video calls, watch movies, research medical conditions, buy shoes, program your television to record a show, manage your dog’s vet appointments, listen to music, play a game, take and store photos and videos, and this one device can fit in your pocket. Read the rest of this entry →

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