Learn Your Special Education Laws, Special Education Rights, and Share IEP Goal Ideas

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 →

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

A New York Times article on January 19 entitled “New Definition of Autism May Exclude Many” has started a panic in the autism community about the changes in the definition of autism scheduled for release in the DSM 5. Are our children in danger of losing services? Can we hurry science? Is anything really changing? These questions and more are perplexing the autism community and professionals as well. I write from the perspective of a practicing psychologist and as the parent of an adult child with autism.

Let’s not lose sight of the bigger picture. The struggle to get and keep good services for a child diagnosed with autism has been the story of my life with my son for over 30 years. Anyone who cannot afford to pay for the services themselves has faced and continues to face the same uphill battle. I doubt that this will change in either direction with the new criteria. Read the rest of this entry →

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 →

I have heard for many years that it is impolite to discuss politics or religion at the dinner table. The reason for this is because many of us use politics and religion, not as a belief or a philosophy, but as a way of defining ourselves. Most people don’t mind if you challenge a philosophy, but if you challenge the way they define themselves then it becomes impossible to have a logical discussion. Any commentary counter to their own becomes a threat to their entire existence. Thus, not wanting dinner conversation to end in argument it has been banned from the dinner table. Unfortunately, what I have noticed lately is that it is also becoming increasingly difficult to hold a conversation on autism without it escalating into an argument. I am convinced that the reason for these arguments is because some in the autism community have started to define themselves by autism. We have become a community of: Read the rest of this entry →

Shaping behavior is an art. As a scientist I think of things that are difficult to do, and very beautiful, as art. I cannot do mainstream art, just behavior analytic art. Shaping can be easy and very difficult to do, depending on the behavior and depending on the ability of the instructor.  An instructor whose behavior quickly becomes controlled by the behavior of that who he is shaping will be better at shaping. Prompting to shape, or as a strategy to establish a behavior, can also be a piece of art.

I see, time after time, instructors using physical prompting to teach children with autism, who, even given considerable training on the job, still overuse the physical contact, making learning slower and fostering inappropriate stimulus control; prompt dependency an accident waiting to happen. I see that even in videos on the internet that are supposed to show good examples of applied behavior analysis being implemented to teach children with autism. I had guessed a long time ago that it may help if instructors receive training in shaping a behavior “with their own hands”, that is, observing the organism behave and making several decisions about exactly when to present the reinforcer contingent on a response that is not yet the final one, but is the one that a) is the closest approximation to that one seen until then; b) with such timing that the approximation itself will not be extinguished until a better approximation is seen and caught, reinforced. Read the rest of this entry →

Last year at this time I had written, “As many of you are aware, autism occurs in 1 in every 110 births in the United States, and for boys, the rate is closer to 1 in 70.” As of today March 30, 2012, almost one year later the CDC as updated their most recent numbers on Autism. According to the CDC:

CDC estimates 1 in 88 children (11.3 per 1,000) has been identified with an autism spectrum disorder (ASD). Read the rest of this entry →

I am 40 years old, married and have one 11 year old child and yet I am still waiting for my Dad to have “the talk” with me. Based on the conversations I have had with my friends, I am not alone. Many Parents are so uncomfortable having “the talk” with their children that they simple ignore it. I don’t recommend this strategy for any parent; however, for parents raising a child with special needs it’s even more important to discuss the subject of puberty and sex in an open and frank manner. Read the rest of this entry →

“After my son was diagnosed with autism, we felt alone.  We had no idea what to do, or who to turn to.  Our friends couldn’t really help us.  We felt isolated, like we were re-inventing the wheel.”   

While this quote is from the mother of a six-year old boy diagnosed with autism three years ago, it could have come from any parent of a child with special needs.  Feelings of isolation often start with the diagnosis.  Family and friends on Facebook may want to help, but usually do not have the foggiest idea what it truly means to have a child with autism, ADHD, Down’s Syndrome, or any other special need.  What’s more, they may even offer unhelpful advice or judgments that further isolate an already stressed out parent.     Read the rest of this entry →

Tell me about it by Different Roads to Learning, Inc. is a language development app that utilizes the Applied Behavior Analysis (ABA) framework to teach “the label, category, function, and features of more than 235 language targets over 6 levels of incremental difficulty.” The current price for Tell Me About It in the iTunes app store is $9.99. The app is designed for children with autism or language development delays. According to the Tell Me About It app page, “For students with speech and language delays or for those with Autism Spectrum Disorder, learning to simply label an image doesn’t necessarily translate into comprehensive understanding of that word. By breaking down each language target by its category, the function that it serves and its salient features, we offer students the opportunity to fully comprehend and then engage in language. This app is ideal for both home and classroom use.” Read the rest of this entry →