The Best Argument Against Autism Speaks: A Special Educator’s Perspective

The Best Argument Against Autism Speaks: A Special Educator’s Perspective

I typically do not like to write about things I am against. 

But when an organization like Autism Speaks continually misses opportunities to do the right thing and listen to the people they are supposedly advocating for…it saddens me. And if you are a special educator…it should sadden you to.

Please don’t misunderstand me. I do not wish to discount the real challenges that families face when they have autistic children. I have seen first hand how difficult it can be for my students and students’ families and I wish dearly that we could give them the support they so desperately need and deserve. But this is not the subject of this post.

As a special education teacher, my job (as I see it) is to 1) give my students access to the general education curriculum using modifications and accommodations 2) along with the Individualized Education Program (IEP) team, create an individualized plan for my students to learn and grow in independence and self-determination 3) advocate for those students who do not have a voice or for who no one believes in…because if no one does…who else will?

So why are so many people mad at Autism Speaks right now? That is an excellent question. The answer is really the best argument against this organization.

This is a statement from their “About Us” page:

Autism Speaks was founded in February 2005 by Bob and Suzanne Wright, grandparents of a child with autism. Their longtime friend Bernie Marcus donated $25 million to help financially launch the organization. Since then, Autism Speaks has grown into the world’s leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. We are proud of what we’ve been able to accomplish and look forward to continued successes in the years ahead.

Simple right? Their aims are 1) to find the cause of autism 2) to prevent autism 3)  to treat autism 4) to cure autism 5) to increase awareness  6) to advocate for people with autism and their families.

So what is the big deal? In following through with this agenda they have forgotten to do what their slogan implores them to do.

It’s time to listen.

Numerous autistic adults have spoken out against Autism Speaks about

• how little money goes toward helping autistic people and families (4 cents on the dollar)
• how there currently are no autistic people that hold any leadership role (now that John Elder Robison has resigned)
• how their awareness campaigns promote fear, stigma, and prejudice against autistic people (2009 PSA “I Am Autism“)

As of this writing, there have been no changes to their policy and with the tone of co-founder Suzanne Wright’s “Call to Action” on the eve of their national policy meeting in Washington D.C., I don’t suspect it will change anytime soon. Here is an excerpt from John Elder Robison’s post about his resignation from Autism Speaks’ Science and Treatment Board.

No one says the Cancer Society does not speak for them. No one describes the Cystic Fibrosis Foundation as an evil organization. All that and more is said of Autism Speaks every day. I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.

Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults. And the fact is, that is the majority of the autistic population. I’ve made that point in the past; apparently to no avail. I’ve suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.

There you have it. If you ran an organization that ignored the voice of people who you are supposed to be advocating for…who would you really be speaking for?

Sometimes I feel like the people at Autism Speaks have the same attitude as some educators who opine about how life would be so much better if those pesky “high-maintenance” parents would just go away. Well…those pesky autistic activists are not going away…and since it is my job to speak up for those who have no voice…I am not either.

Thanks for your time and attention.

If you would like more information about organizations that are helpful to autistic people, please check out: Autistic Self-Advocacy Network, Autism Network International, and Autism Society of America. (edited: Autism National Committee)

Short Disclaimer: I have friends and co-workers who support Autism Speaks and this post is not intended to single anyone out. If you don’t believe what I have written about Autism Speaks you might want to read this post from a previous supporter (a parent with a daughter with autism). In my opinion…it is a must read. 

- See more at: http://www.thinkinclusive.us/the-best-argument-against-autism-speaks-a-special-educators-perspective/?goback=%2Egde_99557_member_5807159921413750785#%21

Courts quietly confirm MMR Vaccine causes Autism

Courts quietly confirm MMR Vaccine causes Autism

After decades of passionate debate, parents probably missed the repeated admissions by drug companies and governments alike that vaccines do in fact cause autism. For concerned parents seeking the truth, it’s worth remembering that the exact same people who own the world’s drug companies also own America’s news outlets. Finding propaganda-free information has been difficult, until now. Dr. Andrew Wakefield At the center of the fifteen-year controversy is Dr. Andrew Wakefield of Austin, Texas. It was Dr. Wakefield that first publicized the link between stomach disorders and autism, and taking the findings one step further, the link between stomach disorders, autism and the Measles Mumps Rubella (MMR) vaccine. For that discovery way back in 1996, and a subsequent research paper published by the doctor in 1998, Andrew Wakefield has found himself the victim of a world-wide smear campaign by drug corporations, governments and media companies. And while Dr. Wakefield has been persecuted and prosecuted to the extent of being unable to legally practice medicine because of his discovery, he has instead become a best-selling author, the founder of the Strategic Autism Initiative, and the Director of the Autism Media Channel. But in recent months, courts, governments and vaccine manufacturers have quietly conceded the fact that the Measles Mumps Rubella (MMR) vaccine most likely does cause autism and stomach diseases. Pharmaceutical companies have even gone so far as to pay out massive monetary awards, totaling in the millions, to the victims in an attempt to compensate them for damages and to buy their silence. Grassroots outcry It was a regular reader named Kathleen that brought this ongoing story to our attention here at Whiteout Press. When asked what her connection to the vaccine-autism battle was, the young reader replied, “I just researched it for a school project a while back and then I stayed on top of it, until I couldn’t stand it anymore. I’m not a parent, nor do I belong to any organization – a mere outside observer.” This reader isn’t alone. The news that vaccines cause autism has spread across the US despite a coordinated media black-out. She takes her concerns one step further explaining, “All I want is to see this information where the public can access it. I’ve looked everywhere, and no one gives this dire Wakefield situation even ONE small mention.” She goes on to give us another motivation for her activism, “In Washington State, where I’m from, vaccines have become mandatory for school children, which is very frightening!” Landmark rulings In December 2012, two landmark decisions were announced that confirmed Dr. Wakefield’s original concern that there is a link between the MMR vaccine, autism and stomach disorders. The news went mostly unreported, but independent outlets like The Liberty Beacon finally began publishing the groundbreaking news. The website wrote last month, ‘In a recently published December 13, 2012 vaccine court ruling, hundreds of thousands of dollars were awarded to Ryan Mojabi, whose parents described how “MMR vaccinations” caused a “severe and debilitating injury to his brain, diagnosed as Autism Spectrum Disorder (‘ASD’).”’ The Liberty Beacon went on to describe the second court ruling that month, as well as similar previous verdicts writing, ‘Later the same month, the government suffered a second major defeat when young Emily Moller from Houston won compensation following vaccine-related brain injury that, once again, involved MMR and resulted in autism. The cases follow similar successful petitions in the Italian and US courts (including Hannah Poling, Bailey Banks, Misty Hyatt, Kienan Freeman, Valentino Bocca, and Julia Grimes) in which the governments conceded or the court ruled that vaccines had caused brain injury. In turn, this injury led to an ASD diagnosis. MMR vaccine was the common denominator in these cases.’ The report echoes the exact same sentiment that our reader conveyed – Dr. Wakefield has had his career and reputation destroyed over the past 15 years, but has just been vindicated. The account reports, ‘While repeated studies from around the world confirmed Wakefield’s bowel disease in autistic children and his position that safety studies of the MMR are inadequate, Dr. Wakefield ’s career has been destroyed by false allegations. Despite this he continues to work tirelessly to help solve the autism catastrophe.’ The article from The Liberty Beacon closes with a direct quote from Dr. Wakefield himself to the independent grassroots outlet, “There can be very little doubt that vaccines can and do cause autism. In these children, the evidence for an adverse reaction involving brain injury following the MMR that progresses to an autism diagnosis is compelling. It’s now a question of the body count. The parents’ story was right all along. Governments must stop playing with words while children continue to be damaged. My hope is that recognition of the intestinal disease in these children will lead to the relief of their suffering. This is long, long overdue.” Wakefield attacked again Since the world has slowly become aware of the dangers of the MMR vaccine, parents around the globe have refused to get their children vaccinated. Earlier this year, the UK government singled out Dr. Wakefield and blamed him for the rising number of measles outbreaks in the country. In an April 2013 interview, he responded publicly. The website TheRefusers.com published both the video, as well as the written transcript, of Dr. Wakefield’s public response. Below are some excerpts of the doctor’s remarks: “The important thing to say is that back in 1996-1997 I was made aware of children developing autism, regressive autism, following exposure in many cases to the measles mumps rubella vaccine. Such was my concern about the safety of that vaccine that I went back and reviewed every safety study, every pre-licensing study of the MMR vaccine and other measles-containing vaccines before they were put into children and after. And I was appalled with the quality of that science. It really was totally below par and that has been reiterated by other authoritative sources since. All I could do as a parent was to say, ‘what would I do for my child?’ That was the only honest answer I could give. My position on that has not changed. So, what happened subsequently? At that time the single measles vaccines were available freely on the National Health Service. Otherwise, I would not have suggested that option. So parents, if they were legitimately concerned about the safety of MMR could go and get the single vaccines. Six months later, the British government unilaterally withdrew the importation license for the single vaccines, therefore depriving parents of having these on the NHS; depriving parents who had legitimate concerns about the safety of MMR from a choice; denying them the opportunity to protect their children in the way that they saw fit. The news shouldn’t be left wing or right wing, conservative or liberal. It should be the news. It should be independent – Whiteout Press And I was astonished by this and I said to Dr Elizabeth Miller of the Health Protection Agency, ‘why would you do this, if your principal concern is to protect children from serious infectious disease? Why would you remove an option from parents who are legitimately concerned about the safety of MMR?’ And her answer was extraordinary. She said to me, ‘if we allow parents the option of single vaccines, it would destroy our MMR program.’ In other words, her principal concern seemed to be full protection of the MMR program and not protection of children.” Dr. Wakefield himself reiterates the final conclusion of the courts in various countries, but censored by the world’s media outlets saying: “Now this question has been answered not by me, but by the courts, by the vaccine courts in Italy and in the United States of America where it appears that many children over the last thirty years have been awarded millions of dollars for the fact that they have been brain-damaged by MMR vaccine and other vaccines and that brain damage has led to autism. That is a fact.” Read More: http://www.whydontyoutrythis.com/2013/08/courts-quietly-confirm-mmr-vaccine-causes-autism.html | Follow us on Facebook: http://www.facebook.com/whydontyoutrythis

Seeing Things as They Are: Dysgraphia

Seeing Things as They Are: Dysgraphia

Dysgraphia

My almost 11 year old son also has Dysgraphia.  This has actually been as hard to deal with in educating him as the Autism.  I keep learning about it and trying new ideas.

Dysgraphia is a learning disability that affects writing, which requires a complex set of motor and information processing skills. Dysgraphia makes the act of writing difficult. It can lead to problems with spelling, poor handwriting, and putting thoughts on paper. People with dysgraphia can have trouble organizing letters, numbers, and words on a line or page. This can result partly from:

• Visual-spatial difficulties: trouble processing what the eye sees
• Language processing difficulty: trouble processing and making sense of what the ear hears

As with all learning disabilities (LD), dysgraphia is a lifelong challenge, although how it manifests may change over time. A student with this disorder can benefit from specific accommodations in the learning environment. Extra practice learning the skills required to be an accomplished writer can also help.

There are many ways to help a person with dysgraphia achieve success. Generally strategies fall into three main categories:

• Accommodations: providing alternatives to written expression

• Modifications: changing expectations or tasks to minimize or avoid the area of weakness

• Remediation: providing instruction for improving handwriting and writing skills

Although teachers and employers are required by law to make "reasonable accommodations" for individuals with learning disabilities, they may not be aware of how to help. Speak to them about dysgraphia and explain the challenges faced as a result of this learning disability.

Each type of strategy should be considered when planning instruction and support. A person with dysgraphia will benefit from help from both specialists and those who are closest to the person. Finding the most beneficial type of support is a process of trying different ideas and openly exchanging thoughts on what works best.

Young Students:

Encourage practice through low-stress opportunities for writing. This might include writing letters or in a diary, making household lists, or keeping track of sports teams.
 

• Allow use of print or cursive - whichever is more comfortable.
• Use large graph paper for math calculation to keep columns and rows organized.
• Allow extra time for writing assignments.
• Begin writing assignments creatively with drawing, or speaking ideas into a tape recorder
• Alternate focus of writing assignments - put the emphasis on some for neatness and spelling, others for grammar or organization of ideas.
• Explicitly teach different types of writing - expository and personal essays, short stories, poems, etc.
• Do not judge timed assignments on neatness and spelling.
• Have students proofread work after a delay - it's easier to see mistakes after a break.
• Help students create a checklist for editing work - spelling, neatness, grammar, syntax, clear progression of ideas, etc.
• Encourage use of a spell checker - speaking spell checkers are available for handwritten work
• Reduce amount of copying; instead, focus on writing original answers and ideas
• Have student complete tasks in small steps instead of all at once.
• Find alternative means of assessing knowledge, such as oral reports or visual projects

Teenagers and Adults:

Many of these tips can be used by all age groups. It is never too early or too late to reinforce the skills needed to be a good writer.
 

• Provide tape recorders to supplement note taking and to prepare for writing assignments.
• Create a step-by-step plan that breaks writing assignments into small tasks (see below).
• When organizing writing projects, create a list of keywords that will be useful.
• Provide clear, constructive feedback on the quality of work, explaining both the strengths and weaknesses of the project, commenting on the structure as well as the information that is included.
• Use assistive technology such as voice-activated software if the mechanical aspects of writing remain a major hurdle.

How to Approach Writing Assignments

• Plan your paper (Pull together your ideas and consider how you want them in your writing.)
• Organize your thoughts and ideas
• Create an outline or graphic organizer to be sure you've included all your ideas.
• Make a list of key thoughts and words you will want to use in your paper.

1. Write a Draft

This first draft should focus on getting your ideas on paper - don't worry about making spelling or grammar errors. Using a computer is helpful because it will be easier to edit later on.

2. Edit Your Work

• Check your work for proper spelling, grammar and syntax; use a spell checker if necessary.
• Edit your paper to elaborate and enhance content - a thesaurus is helpful for finding different ways to make your point.

3. Revise Your Work, Producing a Final Draft

• Rewrite your work into a final draft.
• Be sure to read it one last time before submitting it.

Study Finds High Rate of Medication Use in Children with ASD - West Palm Beach Autism & Education | Examiner.com

Study Finds High Rate of Medication Use in Children with ASD - West Palm Beach Autism & Education | Examiner.com

Prescription medications do not address the core symptoms of autism and are not be considered to be "first-line" interventions or treatment for children with ASD. At present, early, intensive, and behaviorally-based interventions are considered the most effective treatments. Nevertheless, research indicates increasing rates of psychotropic use and the simultaneous use of multiple psychotropic medications (polypharmacy) in children with ASD. Reported rates of use have ranged from 27% to 83%, with polypharmacy ranging from 10% to 20%. The most commonly prescribed medications for ASD are selective serotonin reuptake inhibitors or SSRIs such as Prozac, Zoloft, and Paxil; stimulants such as Concerta, Metadate, Methylin, Ritalin, and Adderall, and atypical neuroleptics such as Risperdal and Abilify, both with FDA approved labeling for the symptomatic (aggression and irritability) treatment of children and adolescents with ASD.

Although co-occurring problems such as hyperactivity, inattention, aggression, repetitive or compulsive behaviors, self-injury, anxiety or depression, and sleep problems may respond to a medication regimen, as well as relieve family stress and enhance adaptability, there are general concerns about these medications. For example, there is a lack of evidence documenting the safety or effectiveness of psychotropic treatment during childhood. Likewise, there is a paucity of information about the safety and effectiveness of psychotropic polypharmacy and potential interactions between and among medications that may affect individuals with complex psychiatric disorders, including ASD. As a result, detailing psychotropic use and polypharmacy among children with ASD is crucial for informing families, clinicians, and researchers.

A study published in the journal, Pediatrics, examined the use of psychotropic medications and polypharmacy by using a large and heterogeneous data set of medical and pharmacy claims for commercially insured children with ASD. Psychotropic medications included: (1) anticonvulsants/antiepileptics; (2) antidepressants; (3) antipsychotics; (4) anxiolytics; (5) attention-deficit disorder medications (both stimulants and non-stimulants); (6) lithium; and (7) anticholinergic/antiparkinsonian medications. Among 33,565 children with autism spectrum disorders, 64% used psychotropic medications and 35% had evidence of polypharmacy. Older children and those who had seizures, attention-deficit disorders, anxiety, bipolar disorder, or depression had increased risk of psychotropic use and polypharmacy. In addition, the majority of children who had seen a psychiatrist had evidence of psychotropic use.

The findings of this study indicate that despite minimal evidence of the effectiveness or appropriateness of multidrug treatment of ASD, psychotropic medications are commonly used, singly and in combination (polypharmacy), for ASD and co-occurring conditions. This has important implications for practice. Because some clinicians caring for children with ASD may not be aware of the extent and effects of psychotropic use and polypharmacy, primary care providers should carefully obtain medication histories and monitor symptoms for evidence of effectiveness. Likewise, there is an immediate need to develop standards of care around the prescription of psychotropic medications based on the best available evidence and a coordinated, multidisciplinary approach to improving the health and quality of life of children with ASD and their families. Finally, additional research is needed to understand why medications are being used (for which symptoms, behaviors, or diagnoses, and by which providers)

Spencer, D., Marshall, J., Post, B., Kulakodlu, M., Newschaffer, C., Dennen, T., Azocar, F., & Jain, A. (2013).Psychotropic medication use and polypharmacy in children with autism spectrum disorders. Pediatrics, 132, 833–840.

Lee A. Wilkinson, PhD, CCBT, NCSP is author of the award-winning book, A Best Practice Guide to Assessment and Intervention for Autism and Asperger Syndrome in Schools, published by Jessica Kingsley Publishers.

A parent letter advocating for her adhd child - National special education | Examiner.com

A parent letter advocating for her adhd child - National special education | Examiner.com