On Blue Light Bulbs

I’ll never forget that moment.

We entered a major home improvement store as we always seemed to be doing as homeowners. It was early spring and the Autism Awareness campaigns were in full swing. My then pre-adolescent son saw it first. It was a sign encouraging customers to “Light it Up Blue” by purchasing blue light bulbs.

He said, “Look, Mom! They are celebrating Autism.”

His face changed as he continued to read on. The sign said autism was a “crisis.” It explained how proceeds would benefit Autism Speaks search for cures and prevention of autism.

My son understood the word cure enough to know it implied he was sick. He looked at me despairingly and asked why they thought he was sick. I told him what I believe – Autism Speaks is absolutely clueless about the life of an autistic person and people are fearful of what they don’t understand. He looked puzzled. He wanted to know why they didn’t just ask autistic people. I explained how Autism Speaks refused to allow autistic people to have a voice in the organization. He shook his head and said how wrong that was.

Then he asked me the question I feared. What did they mean by prevention? Why would they prevent autism? My head was spinning. How could I explain this to my beautiful, perfect child? I blurted out that they cannot prevent autism because it is not a disease, that this was just a way to get more money.

Though not the full story, I could not bear to tell him the rest – that Autism Speaks was heavily funding research that would encourage families to terminate pregnancies. That they were hell-bent on discovering genetic clues so as to advise families against becoming pregnant. That this heavily funded organization wanted to eliminate people like my son from existence through eugenics. That this billion dollar organization intended to find a magic pill that would change my son into something less than, not him.

My heart sank like a rock into the pit of my soul. My son was devastated and deeply hurt and once again, I could not protect him. We left the store that day without what we came for. And we left with a little less hope for the future of humankind.


This Raving Mother from Hell celebrates 1000 Ausome Things #AutismPositivity2013

My thirteen year old ausome son…

  • knows more about plant and animal biology than most college students
  • is more protective of earth’s precious plants and animals than most conservationists
  • takes more seriously performing in a play or concert than most adults
  • is more decent to humankind than it often deserves

I hope someday to be half the amazing person he is.

What You Don’t Know

As the Pennsylvania Legislators continue to examine bills related to funding PA’s Public Cyber Charter Schools, many families like ours sit on pins and needles waiting to find out the fate our children’s education. Much of the public likely has little opinion on the matter other than – save us taxpayers money. So it’s not exactly front page newsworthy to the media. But there are some really important things that families who rely on these schools, need you to know. Our children will have no schools to attend should these bills pass.

Cyber Schools do not cost taxpayers any additional money. In fact, it works like this. Only a portion of school taxes that are collected through property tax is passed along to the cyber schools. The tax money you pay now (whether you have a child enrolled or not) is sent to the local district who then takes a portion of that and gives it to a cyber school. That is, if a district student transfers to a cyber school, the school district takes a portion of the per pupil funds it’s collected and pays the cyber school for that one student. No additional tax revenues are collected from the public. Noteworthy is that the districts still keep a good portion of the per student tax revenue. Only a portion is sent to the cyber school who has to supply all that student’s educational needs.

Most, if not all, cyber schools in Pennsylvania are non-profit organizations. They are not for profit. Cybers, like districts, however, purchase curriculum from other companies. These curriculum companies, like Pearson Education Inc., Macmillan/McGraw-Hill, and K12 are typically for-profit. Though cybers may have fewer options than districts because of the instruction model, the companies that sell the curriculum are not reflective of the school’s administrative business model. There is little to no difference between a district buying Pearson’s curriculum and a Cyber buying K12’s curriculum.

Cybers are not failing to make AYP (annual yearly progress) any more than many districts are. In fact, it is not feasible to compare districts scores and progress with large multi county cyber schools. A school district is measured on a scale that uses grade spans: 3-5 for elementary schools; 6-8 for middle schools and 9-12 for high schools. Only one of the three grade spans needs to hit the testing targets for a district to make AYP. Cyber schools do not get to span grades. Therefore, all scores are tallied for the cyber and it’s pass or fail – no in between. The other problem is this. Small districts do not have the diverse demographics that larger schools, such as cyber schools have. When a district only has a few students under a certain demographic, they do not have to report those students scores under a performance target. Cybers and large districts inevitably always have enough enrollment that they must report all scores for all demographics. So while District X and Cyber Y may both have low scores for a special education population, only Cyber Y gets it counted against their AYP.

Children do not sit in front of a computer all day. That is a myth. These kids are doing hands on education. Especially at the early elementary level, students  are provided with a multitude of books, math manipulatives, art supplies, science tools and more. Until they are older, very little is done on the computer by the student. Rather, the parent uses the computer as a teaching guide. As they get older, students attend live classes in a virtual classroom. Though not in the same room, these children get to know each other through the virtual class. They interact with each other and the teaching staff. These students are required to read novels, write essays and research reports, and do hands on science experiments.

Families who choose cyber schools typically do so as a last resort. Face it. Bringing your child home to learn is a huge commitment. Many have to quit jobs so they can stay home for their child. We are not typical home schoolers. Typical home schoolers don’t want the rigidity of a public education. Cyber schools are public charter schools and must follow all the same laws and more as the local districts. Our children are in cybers for a variety of reasons, but almost all of those reasons point to deficiencies in our local districts. Many of these children have special healthcare needs and/or are academically gifted. These kids were not getting what they needed to be successful in the district program. Many families try with blood, sweat, and tears to work with their local districts before making such an immense decision – to bring their child home.

Passing bills that reduce cyber school funding will ensure that the cyber schools shut down. As you have already read, these are non-profit public schools. They are not money making machines. The proposed bills all point to speculation about how much it “should” cost to provide distance education. There has not been one cost study done, however, to see what the actual costs are. So since they are pulling numbers out of the air, the legislators added verbiage that encourages districts and intermediate units to set up their own cyber schools. If districts do this (some of them already have them – though I have yet to hear if anyone is enrolled because they limit who can enroll), the districts don’t have to pay tuition to another cyber school. Well, at least not most of it. The bills call for massive reduction to cyber school tuition plus a 50% reduction after the massive cuts. No school can survive on less than half tuition. And most families cannot financially afford to pay that 50% tuition. Thousands of Pennsylvania’s children will lose their schools.

If we want to talk about reform, the public needs to know that what is going on in the public education brick and mortar sector, is far from on the up and up. Just in the last month two Pennsylvania Intermediate Units have been caught up in financial scandals. One North East former administrator is going to jail. The other Northwest IU was caught  using $11.7 million in funds marked for special education for buying multiple company cars. More recently, another IU administrator is on leave for breaching the Right to Know law. The point is this. If we want reform, it has to be fair and it has to be across the board. Picking on cybers makes little sense when brick and mortar charter tuition costs far more. And what of the corrupt use of funds by the intermediate units? Where is the public outrage there? And when was the last time a full audit was done to the local districts to make sure they weren’t using funds earmarked for instruction as ways to buy the administrative staff a new Lexus? Other districts have been caught cheating on the PSSAs, the tests that determine if they make AYP.

I challenge the legislators to take on the problems that have driven families to chose a cyber school. If you want to shut these schools down, you must first fix the problems that brought us here. Enforce the laws and hold all public schools accountable. Everyone should question why only one type of public school is being attacked. It is nothing more than a money game.

Cyber schools are not for everyone. It takes a very patient and dedicated family team for this model to work. But for some families, cyber schools are our only choice when our children are “left behind” by a lackluster and even sometimes, corrupt district. Please don’t take away our children’s only opportunity for a public education.

Are you a cyber schooling family? 
Share your story with PA Families for Public Cyber Schools!
Cyber schools are helping our children.  Now here is your chance to tell the story of how cyber schools are working for your family. Please go to http://www.pacyberfamilies.org/sharestory and help us tell your story!





My April Vow

This April, I vow not to make Autism Awareness about me. I vow instead to make Autism Acceptance about Autistics, like my son. 

I am allistic, a parent, an observer, a bystander. 

I will not “light it up blue.”
I will not promote “puzzle pieces.”

I will let the people who wear the autistic label define their disability. Nothing about them without them.

Let April be about truly supporting people with disabilities instead of advocating for the families – the parents. 

This has never really been about me. 

Join me and take the pledge to only attend, speak at or otherwise participate in autism panels, conferences and events that meaningfully involve Autistic people. 

ASAN Statement on Media Reports Regarding Newtown, CT Shooting

Media outlets were quick to disseminate misinformation in regards to today’s tragic shootings. ABC originally reported speculation that the gunman was “autistic, or has Asperger syndrome and a personality disorder.” but has since removed that story. Sadly, other media outlets picked it up and within minutes, this potential misinformation went viral.

The Autistic Self Advocacy Network released this statement.

In response to recent media reports that the perpetrator of today’s shooting in Newton, Connecticut may have been diagnosed on the autism spectrum or with a psychiatric disability, the Autistic Self Advocacy Network (ASAN) issued the following statement today:
“Our hearts go out to the victims of today’s shooting massacre at Sandy Hook Elementary School in Newton, Connecticut and their families. Recent media reports have suggested that the perpetrator of this violence, Adam Lanza, may have been diagnosed with Asperger’s Syndrome, a diagnosis on the autism spectrum, or with another psychiatric disability. In either event, it is imperative that as we mourn the victims of this horrific tragedy that commentators and the media avoid drawing inappropriate and unfounded links between autism or other disabilities and violence. Autistic Americans and individuals with other disabilities are no more likely to commit violent crime than non-disabled people. In fact, people with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. Should the shooter in today’s shooting prove to in fact be diagnosed on the autism spectrum or with another disability, the millions of Americans with disabilities should be no more implicated in his actions than the non-disabled population is responsible for those of non-disabled shooters.
Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice.”
Media inquiries regarding this shooting may be directed to ASAN at info@autisticadvocacy.org.


I Stand With Henry

On the tails of my last entry – how functioning labels are harmful, comes young nonverbal autistic, Henry. Henry wants to be treated like a human being. He wants people to stop talking in front of him – about him – like he’s not there. He wants to go to his neighborhood school. Not in some self contained segregated classroom. He is smart and wants to be treated with dignity and respect. Henry is not an anomaly and we must stop thinking that he is. Many autistic people with communication differences are labeled with low IQ and lack of potential –  inappropriately so. We must STOP. NOW.

I stand with Henry because every student and every human should be afforded equal rights and respect no matter. Only when society stops sorting and valuing people based on labels will society truly be free.

How to Profit from Your Enemies – by Autism$peaks

NOTE: 4-8-2011 Update Follows at End of Article- Cafe Press’ Response

During my morning Facebook check in routine, I stumbled on a post by a fellow advocate, Paula C. Durbin-Westby. The post stated simply,

If you have a Cafe Press site and have the word “autism” in your product name or line of products, 10% of the final sales purchase will be donated to Autism Speaks. If you don’t like your site being used in that way you can contact Cafe Press.

For those unfamiliar, Cafe Press is reseller of personal logo-wear and accessories. Every day “joe’s” can upload their logo and have their own store front. Cafe Press keeps the profits, but stores are encouraged to mark up prices as to make a small profit on everything they sell.  As a member of non-profit who hosts a logo shop at Cafe Press, I was a bit curious as to how this Autism Speaks campaign could possibly work. I went to their blog where they give the details http://blog.cafepress.com/2011/04/05/a-voice-for-autism

Here you find the details of the promotion.

* An amount equal to 10% of the final purchase price for all products tagged with “autism” and sold through CafePress.com Marketplace during April 1, 2011 through April 30, 2011 will be donated to Autism Speaks

Key in the promotional guideline is this – for all products tagged with “autism.” Store owners use tags to help market their products. For instance, if you search for autism at the site, Cafe Press will return results with this tag. I probably do not need to tell you that anyone can use any tag whether its to help or hurt a cause.

Perhaps Cafe Press is unaware of the millions of dollars Autism Speaks rapes from the people in the name of helping those with Autism. Thing is, they are a grassroots organization in name only. They do not “give back” to the communities who fund them. They profit and divvy that profit up among their high paid executives. In 2009, Autism Speaks paid out more to their internal employees than all that they spent on research and advocacy. Their IRS 990 form is here. I’m no mathematician but thankfully others are better. Here’s a nice breakdown of how Autism Speaks spent their money from a fellow blogger:

That’s just the tip of the iceberg, really considering they have now surpassed popularity of other Autism organizations who preceded them. I can only imagine what 2010’s 990 will look like.

But lets look at a bigger problem. Autism Speaks does NOT support self advocacy. Autism Speaks has gone as far as to sue a 14 year old Autistic teen over a blog that denounced them. That story can be found here:

The gist is that a teen made a parody site called NT Speaks that denounced intolerance. And though she did not use Autism Speaks logos, she designed the site to be similar in look and feel. And though this is not considered a copyright infringement according to law (parody sites are exempt), their high-powered attorney used intimidation and threats and made her destroy the source code for the web site.

There’s more. Over the years, Autistics have been trying to sit on Autism Speaks board of directors. They will NOT allow someone with Autism to infiltrate the organization. That says it all to me. Autism Speaks who has been notoriously vocal against the very people it supposedly supports, has found a way to profit from them.

So, if you shop at a store that promotes Neurodiversity you are inadvertently donating to Autism Speaks. If as a store owner you have tagged any of your items with “autism,” they are getting 10% of the sale. 

I posted a rather to the point comment on their blog that has been awaiting moderation for roughly four hours and counting. I’m not the only one. Others have posted comments that are either being ignored or sat on until the smoke clears. [update: Cafe Press did not approve my comment as of 4-7-2011, it’s no longer pending or there. No one else’s comments exist either].

Perhaps Cafe Press is now scrambling to undo the mess. Or perhaps they have a vested interest in Autism Speaks. But I for one, am considering cutting business ties with them. No matter how or why they chose this campaign, it was in bad form to presume that their clients would happily contribute to an organization.

4-8-2011 Update
I received this response from Cafe Press regarding the issue:

Thank you for your blog comment; we appreciate you taking the time to share your thoughts on our Autism Awareness program. Over the past 24 hours we’ve received many other messages expressing concern for our decision to donate a percent of proceeds to Autism Speaks.

The response we’ve received takes us a bit by surprise, as this is our third year partnering with Autism Speaks and the first year we’ve heard concerns voiced about specific organizations or their approaches. That said, as a community-based business we feel it is important to listen and respond to our users’ concerns. You helped us to understand an adjustment to this program is needed. We have learned a lot about Autism in the process and feel privileged to be a part of the national conversation about supports for individuals and families facing the challenge of Autism.

For this year we’ve already made a commitment to Autism Speaks, and we do not want to go back on our promise to them, but we do want to add another charitable organization to split the money donated and balance our support to other Autism related good works. We’re asking our community to choose the specific Autism support charity that will receive ½ of the money raised through sales of Autism related goods.

If you’re interested in voting on this additional charitable initiative, or want to suggest one not on our list, please visit http://www.surveymonkey.com/s/X8QNK3N.

While we know this may not answer or solve all of your concerns, we hope it helps to show our commitment to the community and to a dialogue about Autism support. Please know that we have nothing but the best intentions with our Autism Awareness donation plan and we hope you find our changes to the program palatable.