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The Path For Autistic Kids Aging Out of the School System: Severely Autistic Especially At Risk for Warehousing   

May 3, 2015 in Special Education Advisor Blog by Jess

A recent NBC  Dateline episode, “On The Brink” which aired April 12, 2015, highlighted a dire situation facing many autistic young adults and their families.  It stated that within the next two years approximately 500,000 autistic teenagers will become ineligible for a free public education because they will have reached the age of 21.  The unofficial term for this is “ aging out” of the system.  This will result in an influx of adults with significant functional limitations into the mainstream, with few educational, vocational and social resources available to them.  In addition to the financial stress that will be put on state and federal social services, the expense to individual families responsible for the care and well being of these autistic young adults will be overwhelming, and in some cases impossible to manage. The result is clear:  the inhumane neglect of the educational potential of these young people, who by age 21 are not miraculously ready to have their academic  education terminated, and replaced with only vocational tasks they may or may not enjoy, feel proud of or challenged by.

Federal law states by the age of 16 students with developmental disabilities are supposed to have Individualized Transition Plans (ITP) in place as part of their Individualized Educational Plan  (IEP).  The ITP is supposed to serve as a template for formation of a plan to identify skills and capacities that need to be developed, in order to prepare the young adult with disabilities to leave high school and be  successful in an environment outside of the educational system.  These settings would include vocational training programs, social settings, and employment settings.  This plan in theory seems to be a good one:  start 5 years before formal state education is terminated and prepare the student (to whatever degree possible, given the particulars of their disability) to enter a setting for adults with developmental disabilities.  However, there are flaws with how this theory of post secondary programming for the developmentally disable is executed.

Flaw #1:  The ITP  Itself

The ITP is supposed to be specific in identifying and highlighting job related skills which need to be worked on.  It is supposed to have measurable goals, with time frames for those goals to be achieved.  It should include strategies for success aimed at creating growth and change in the functionality of the student.  If it is to be useful, it cannot be generic, use boilerplate phrases that allow for boxes to be checked off, and lacking a plan with therapeutic measures in place.  These components are essential   to making sure precious time is not wasted on helping these students attain personal growth, which will lead to success in  future diverse settings.

The current form of the commonly used ITP ignores the cognitive and educational skills of the student, almost as if the student has been written off by age 21-22 as not needing to add to their academic base of knowledge.  This mindset of the current form, therefore, relegates these young adults to “doing” tasks, usually at lower level jobs.  There is nothing wrong with those  jobs, and  nothing wrong with some students being placed in those jobs.  However, is it fair to decide at a certain age that the more significantly affected individuals have reached their academic potential, and that we will absolutely define how they will spend their future?

With the passing of the Self Determination Legislation there is a new and much needed respectful mindset toward the issues facing the developmentally disabled and their families.  However, it is not directly useful to the disabled who have limited speech, cognitive impairment and sensory motor issues.  Those individuals cannot advocate for themselves, and even with strong parental advocacy,  without the commitment of secondary educational institutions, adult day settings, or vocational settings  to teach functional academics, they will not be able to reach their potential for job or social success.

Flaw #2:  Secondary Educational Mindsets, Attitudes, and Curriculum Content

As a parent of a twenty-year old son with severe autism, and as a professional in the field, it has been painful and frustrating to navigate the rigid mindsets and politics of a large school system.  Once I made sure that I became educated and accomplished in the field as a writer, lecturer and practitioner, I became an advocate for my son which caused much resistance and insecurities with certain schools, from the administration down to the teachers.  I came from a mindset of being an expert on my son’s type of autism, and provided high level information, resources, and personal time to assist in creating a curriculum that reflected who my son was and is, and what he needed to get to that next level of his functional capacity.  I thought this would be of help and welcomed.  However, I have been met with resistance over the years.  The main challenge has been to insure that my son’s abilities were maximized, and that his disabilities were well understood, and that effective interventions were used.

The major problem has been one of attitude, expressed directly or indirectly as an overly sensitive reaction by staff, either feeling not appreciated or minimized.  That has resulted from the advocacy of educated, involved parents who want the collaborative model to go beyond merely meeting as a team,  and instead to also allow for parental input aimed at directing components of their child’s program where clearly indicated, or aimed at striving for a direction which should have been whole-heartedly tried to test its efficacy.

The curriculum issue of most concern is the practice of teaching children with moderate to severe cognitive disability information that is not understandable, meaningful, or useful to them. It is fine to share general information about history, literature or science.  However, for the significantly developmentally disabled student, much of that information will not appropriately further functionality.     By contrast, improving their ability to spell, read, and practice simple math will improve the comprehension of more complex interactions, and expectations, they will encounter.  Academic skills are a huge part of being  successful in a variety of vocational and social settings outside the traditional classroom setting.  To leave academics out of the ITP, and out of programs working with these individuals, is a blatant misunderstanding of what a comprehensive program needs to be.

Relatedly, the goal of supporting brain development, and moving up the developmental ladder, should be an ongoing priority for programs working with the developmentally disabled.  The human brain has plasticity, so potential for learning and advances in all domains of functioning is possible for this population.  The brain continues to develop to its full capacity up to the age of 26-28, so it  makes no sense to terminate academic learning for any kid, typical or non-typical before that age.  For the developmentally disabled, autistic population, it makes even less sense than with neuro-typical kids.

Solutions and Hope

Professionals working with transition young adults and formulating their ITP’s should expand the format to include a section that addresses the continued need for functional academics which could improve job performance, skill acquisition and appropriate social interactions in the workplace.  Programs working with this post secondary educational population need to provide some attention for the kind of reading, writing, spelling and math that will be necessary in  workplace and social settings.  They need to provide professional educators who can identify a person’s academic skill set, and build on it with certain jobs/careers in mind.  For the more profoundly affected individual, supports should be built into programs to help improve communication skills which will further support a sense of connection to the work settings and other people.

Regional Centers also need to recognize the need for a continued academic educational component for special needs programs they vendor.  Parents need to play a consistent role in  continuing the focus on functional academics in the home and in the community.  Parents should periodically obtain clinical and educational assessments, and provide those to adult placement centers to increase the effectiveness of those programs which in turn provide services and opportunities for their son or daughter.

There is and continues to be power in learning, and people challenged with cognitive difficulties should be reminded in an ongoing fashion they have the ability to learn, grow and accomplish goals that have meaning for them.  No matter how limited an individual's communication skills, attempts must be made in school and in post-secondary vocational programs to read the verbal and non verbal signs that person is sending in their attempt to be heard and understood.

 

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April, a Time for Autism Awareness……a Time to show Compassion

April 1, 2013 in Special Education Advisor Blog by Dennise Goldberg

Once again April is upon us and while it brings the thought of spring time, it also reminds us as a community how important it is to address the subject of Autism.  While some of us discuss Autism all year long for many April is the one time of year when society discusses Autism; how does it happen, why does it happen and what can we do to not only be aware of Autism but to accept all forms of neurodiversity.  These are all valid discussions but let’s not forget those who have yet to be diagnosed.  In spite of what the statistics say, I believe there are many more children and adults who are never diagnosed. 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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No Autism at the Dinner Table

April 8, 2012 in Special Education Advisor Blog by Dennise Goldberg

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 →

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