Dear John : All the Right Moves

Wed, 3 Mar 2010 20:50:47 -0800

The autism community is extremely critical when Hollywood attempts autism. So when Hollywood does a good job, we should show our support. Go see Dear John before it’s out of the theaters. It’s one of the best autism portrayals that I’ve ever seen. Yes, Claire Danes did an excellent job as Temple Grandin (she really did) but the young Braeden Reed played the role of Alan in the movie so authentically that my husband turned to me and said : “He’s got to really be autistic”. Sure enough, Braeden Reed is autistic and he knocked it out of the park.

The film follows a young couple--the equally charming Channing Tatum and Amanda Seyfried--through a long-distance relationship delivering a love story that will be remembered and pondered for years to come. Well, at least by me. But those are not the autistic people. The autistic characters are co-stars that help give dimension, heart and compassion to the young leads. My husband (a veteran of the Marine Corps) write reviews of military films so we waited for the credits to reveal the military advisor and autism consultant. I immediately went home to look up Phil Blevins, Executive Director of CarolinaAutism.org and we struck up an email conversation. And this is what he had to say:

When the casting agent contacted me he said that he had been told it would be easier to hire a child who did not have autism and have me coach him to act like he did have autism. I immediately told him that I would rather introduce him to someone with autism. I referenced movies like "Mercury Rising" and "House of Cards" as examples of movies in which a child tried to mimic autism. I let him know that many people found those performances lacking in authenticity - bordering on offensive. I don't think that a child trying to imitate autism would be able to show us that autism and at the same time show joy. Braeden was joyful and it showed on the screen as I hoped it would.

And his joy rubbed off on the filmmakers. My favorite example: The livestock coordinator, Dan Hydrick, was assigned to "assess" whether Braeden could do the horse scene. They had already hired a double for the actual riding parts, they just wondered if Braeden could sit on the horse long enough for a closeup. Dan met us at a riding stable and right away told me, "Look, no offense but I work for the movie. I don't give riding lessons and frankly I don't think Braeden should go near a horse. But they asked me to see if he can at least sit still on one." Braeden had never been near a horse. In the movie there was supposed to be a scene in which Alan rode with his hands in the air. They planned to shoot it from behind so you couldn't tell it wasn't Braeden. Right there at the stable we all watched as Braeden lived the scene, holding Honey's muzzle and staring into her eyes, tuning all the adults around him out. I still cry (even as I type this) when I remember Braeden riding with his hands in the air at the stables and Dan taking digital photos to bring back to to Lasse to ask for Braeden to do all the shots himself, no stunt double. Later Dan told me "That boy changed my life.”

There was another character in the film, Mr. Tyree, played by the incredibly talented Richard Jenkins. Mr. Tyree is an undiagnosed autistic left to raise a son on his own. Jenkins is superb in balancing his love for his son and his own social anxieties. I don’t know how much longer Dear John will be in theaters but do yourself a favor and go see it. That young autistic actor gave me hope that people are beginning to understand and respect autism.

The 10 Year Battle, And Counting...

Sun, 31 Jan 2010 21:22:33 -0800

I thank my friend for sharing his family’s story. It’s long, it’s heartbreaking, and it’s important. Please take the time to read it. I wish you and your family all the best, my friend, and I hope that one day you will be able to end this battle. ---- D.C.

The 10 Year Battle, and counting…
This is the story of our experience of trying to obtain services for our child with Autism and other co-morbid conditions. Please take the time to read it. It is all true, unfortunately. We have used the name “Lucas” to circumvent legal issues and no names or names of places have been used. The story is by no means complete but you can clearly get the essence of our battle.
1999
Lucas entered the elementary school district in 1999. Prior to his entry we had had him assessed by our local school district (at the time), which had performed an excellent assessment of his needs.
The district took that assessment and filed it away somewhere and apparently never read or understood what Lucas’s needs were.
Lucas lasted about 3 days at the elementary school (in addition to frightening the life out of the brand new, inexperienced, untrained, no special education credentialed, first teaching assignment, teacher) before he was admitted to the hospital so that we would try to figure out what was going on with his behavior. The hospital was an excellent learning experience and they performed numerous tests and assessments, pinpointing, again, all of Lucas’s needs and what needed to be provided by the elementary school.
It is important to note that during his short three-day stay at the elementary school, the school psychologist would routinely pull Lucas’s older fourth grade sister out of class to calm him. This was because no one in the entire elementary school or district knew what to do with him, yet his sister, a fourth grader, knew exactly what to do. Amazing.
After Lucas’s hospital stay, we met again with the district and even had the social worker come from the hospital to reinforce what Lucas needed. The district again, took all of this information and filed it away somewhere. The district decided to home school Lucas until an appropriate school placement could be found. Again, they sent an unqualified and untrained elementary school teacher to work with Lucas. This lasted only one visit, whereupon the district deemed that Lucas could not be home schooled.
Shortly thereafter (about a month or two) the district placed Lucas into a Non-Public School (NPS) “preschool” class and not a “Kindergarten” class, which is where he was supposed to be. In addition to not putting him in a Kindergarten class, they did not put in any of the services or supports that were described by all of the hospital assessments and the hospital social worker at our meeting. Needless to say, Lucas did not do well there and finally just short of being asked to leave Lucas was moved to another NPS after about 9 months.
2000
Upon reviewing the second NPS, it appeared that they had a handle on the behavioral approach and clearly had enough staff, and we were told from the start that Lucas would not be able to “learn” until they got the “behavior” under control. Since this program was primarily for children that were “emotionally disturbed” (or ED) and not autistic, it too was doomed from the start.
An interesting point about programs that are not experienced with other disorders that they do not serve. For some reason they believe that they are experts in all areas (or at least enough to rule out other diagnoses), but they only see the diagnosis that they serve in the children that attend their program (regardless of what is really there). And, although they state that they want parent involvement, they really want the parents not to interfere in “their” process.
About the time that Lucas began at the second NPS he was diagnosed with Type 1 Diabetes. Prior to this Lucas had the diagnoses of Temporal Lobe Epilepsy, ADHD, Intermittent Explosive Disorder (IED), Oppositional Defiant Disorder (ODD), Expressive/Receptive Language Disorder, and some other learning disorders. He did not yet have the diagnoses of Autism.
We continued to plod along trying to work with the district and NPS with which we thought that we had a fairly good relationship with because they were there to help us right? Wrong!
Of course we knew nothing about diabetes and with the whirlwind of behavioral challenges and learning the ropes of Special Education we were very uneducated and unaware to say the least. This was all about to change through the benefit of the incompetence of the public school system.
While attempting to get the necessary medical services for Lucas to participate in school we were met with great resistance from both the district and the NPS. Due to this resistance, we did some research and determined that Lucas was eligible to receive protection under Section 504 as well as IDEA. We were repeatedly told by both the district and NPS that everything that Lucas needed was covered by IDEA. Lucas’s IEP however, had absolutely no health care language anywhere, so we wrote our own Section 504, which the district stated that Lucas’s doctor would have to approve the plan, and he did. (The district thereafter contacted Lucas’s doctor without our consent or participation and convinced the doctor that Lucas was already receiving everything that he needed through his IEP. The doctor then changed his position based on the conversation with the district and without consulting with us. We had to start the fight all over again.)
2001
While attempting to get these supports put into place and on the day after one IEP where we had many discussions with the district and NPS regarding healthcare, Lucas’s transportation aide arrived in the morning with an ultimatum. The aide handed Lucas’s Mother a document to waive all liability from her in the event that something should happen to Lucas. As a condition of her continuing to perform the function as Lucas’s transportation aide we would have to sign the document and relieve her of any liability. When we refused to sign the document the aide quit on the spot and the matter of providing Lucas’s transportation to the NPS was relinquished to us (the parents, immediately) for an indefinite period of time, as there were no backup aides. This is only one of many unethical practices that the district and NPS staff did continually.
As an aside, Lucas had also been a consumer of the Regional Center (an agency in some states that provides services to children and adults that suffer from developmental disabilities). I will not go into the experiences with that agency but needless to say they were very similar to our experiences with the district and NPS with both of them continuously pointing the finger at the other and doing nothing for Lucas.
Lucas’s Mother at this point had to take a leave of absence from work until such time that the district could locate, hire and train another aide to transport Lucas to the NPS. During this time Lucas’s Mother began to research and educate herself (and me) on the Special Education process. One of the advocacy organizations that we came across was Wright’s Law (www.wrightslaw.com). We flew her to Columbus, SC for their boot camp and she learned all sorts of things that the district and NPS had not shared with us, intentionally. One of the most important things was assessments. The district is required by law to assess and evaluate your child under ALL areas of SUSPECTED disability, not just the ones that THEY think that he might or might not have.
The district and NPS had maintained all along that Lucas could not be assessed because he would not cooperate. However he had cooperated for all of the assessments that we had had done independently of the district and NPS. We would later find that one of the reasons that the district and NPS could not perform an assessment of Lucas was due to their belief that he was not performing to his full capability (or to the level of capability that they believed that he had). Each time that we would attend an open house at the NPS we would never see any papers on the wall of Lucas’s work. When we asked why we were told that Lucas would not cooperate. After 2 years of the NPS attempting to remediate Lucas’s behavior and failing, and not being able to assess Lucas in any area of disability, the light bulb came on.
We stop signing that we agree with the IEPs, which gets their attention, at first.
2002
We move forward with our own assessments since the district and NPS refused to do so. Luckily, we found two really good doctors who split up the task to assess the psychological and the neuropsychological. After reviewing all of the documents on Lucas the psychologist came to the conclusion that Lucas may in fact have Autism, which would explain the laundry list of previous behavioral diagnoses. Over the next six to nine months the assessments would indeed state that Lucas was on the Autism spectrum and had numerous learning deficits that had never been discovered by the district or the NPS, let alone addressed by them. The Autism diagnosis was also confirmed by the neuropsychologist and later, in 2003, by another independent psychologist consulting for the Regional Center.
The NPS environment continues to erode.
2003
We presented the results of our independent assessments to the district and the NPS. The response was, “No new findings.”
By this time, some four years after being in the district and three years in the NPS, Lucas’s behavior and learning deficits that have gone unaddressed have only worsened. Lucas is spending as much or more time in the “quiet” room (a seclusion room) as he is in the classroom. He is being restrained, frequently. One day I arrived to pick him up and he was in the “quiet” room with a piece of carpet (that he had ripped from the floor) wrapped around his hand punching the walls. The NPS staff did not know how to calm him, which I did within a few seconds after entering the room.
The school psychologist attempts to medicate Lucas with everything under the sun, desperately trying to “fix” his behavior. Some of the medications make his behavior severely worse. Some of the medications make him stand on his head or do cart wheels. None of them work. The district and NPS are increasingly pointing at us (the parents) as the problem with his continued lack of progress yet they call us constantly to ask advice when they cannot handle his behavior. Lucas has a daily routine of eloping out of the classroom and climbing a tree in the playground whereupon no less than six staff surrounds the tree waiting for him to come down. You would think that after the first couple of times they would figure out how to circumvent this behavior (since they are the behavior experts) but it never happens. They eventually cut down one of the trees that he climbs on a regular basis (how’s that for behavior modification?). The entire situation is completely out of control.
All of the reports from the NPS indicate that Lucas is making progress across the board, falsely. They report, falsely, at every IEP that he is making progress in all areas, including behavior.
We file a complaint (hundreds of pages, the complaint and supporting documentation) with the state board of education that ultimately finds that the district and the NPS are doing everything that they are supposed to and Lucas is making progress. (We should have known better when the person that we spoke with at the state board of education did not know what a Functional Behavioral Assessment (FBA) was.) The FBA was another assessment that the district and NPS did not perform at our request and should have been the first thing that they did or at some point thereafter when Lucas’s behavior did not improve.
2004
The final report is released by the state board of education indicating that Lucas is making progress and that the district and the NPS are doing everything that they are supposed to.
One incident (on the heels of the state board of education findings) brings everything to a head whereupon Lucas escaped the NPS campus and four (or more) NPS staff jumped into a van and chased him down to bring him back to school. The police were called. The police attempted to speak to Lucas and convince him that if he did not “behave” they would be called back to arrest him. This of course did not mean anything to Lucas since he has a memory deficit in addition to other learning deficits that had never been addressed.
We spoke with one of the psychologists that diagnosed Lucas with Autism about the incident. The psychiatrist told us, “You have to get him into the system so that he can get the help that he needs because he is not getting what he needs at the NPS.”
We then wrote a letter to the NPS basically stating that we were very concerned that they could not handle him, after 4 years, and that should this happen again they were to call 911 and have him transported to the hospital for observation. Of course the NPS did not like this so they wrote us a letter in response stating that they would be returning Lucas to the district because of “safety and a failure to make progress.” So now after they had lied to the state board of education stating that Lucas was making progress they are now going to dump him back in our lap (because he had nowhere else to go, and that’s another long story where we were trying to get him into a different school and they told us he was getting everything that he needed right where he was and refused to move him).
After some wrangling and exercising our “stay-put” rights we eventually had to retain the services of an attorney. The beautiful thing about this attorney is that he loved to stand up and yell at districts. We really enjoyed the fact that someone was finally on our side and we didn’t have to appear too aggressive or too lax or too whatever the district and the NPS were going to use against us.
One of the things that the attorney told us early on was that the district attorney had contacted him and said, “What do you want?” He said that he had never had a district do that (even though it turned out to be just lip service).
2005
After much assessing and finding of experts and service providers we hold a massive IEP with attorneys and everyone else involved. The IEP goes wonderfully and everybody knows what is required of them and what they are supposed to do and further, what “Lucas’s” needs are.
A month later we receive a document stating some general services that are non-specific to Lucas. It was as if the district and NPS were at a completely different meeting than we were. Negotiations that go nowhere continue into the summer. Eventually, the NPS kicks Lucas out of school by not renewing the contract for him with the district. They did renew all of the other students’ contracts.
Lucas was now at home without any services or school. The most that he has is daycare that is makeshift with its own problems, which causes him to regress further. My wife searches for a program for him and finds one at the local hospital, a day treatment program that looks like it might work as most of the staff are already familiar with Lucas from his previous stays there.
We take Lucas to the program and check him in. We then leave to go to a meeting with the Regional Center and legal people again, attempting to get services for him to try and keep him home. Twenty minutes into our ride there we get a phone call from the head of the hospital department. Apparently, Lucas wanted to listen to his CD player. When staff told him that he could not he got upset and knocked a window (an unbreakable one) out of its frame and cracked it, with his head. They were calling us to get permission to immediately admit him into the psychiatric ward at the hospital. They had him in full restraints and gave him Thorazine to knock him out. The doctor said that he could not believe the level of intensity of the behavior that we had been dealing with. This was because we understood Lucas and were fairly effective in managing him as best as we could without an appropriate school placement (for years) or any support services. If you have ever read the book, The Explosive Child by Dr. Ross Green, you will understand exactly what I am speaking about.
The hospital stay lasted about a month and again was a place that did not understand the problems that Lucas had, nor did they want to. Eventually we had to remove him, against doctor’s advice (like they knew what they were doing and there are many bad examples of how they handled things), because we feared for his life. Their whole approach to treatment was to knock him out with Thorazine every time that he had a behavioral outburst. This caused problems with his diabetes care as Thorazine causes high blood sugar, which they again had no expertise with and did not manage effectively.
The day that I removed him from the hospital they had given him insulin and no food due to a restraining incident. For this reason we ended up in the emergency room because he started to pass out due to hypoglycemia immediately after his discharge. When I attempted to take him back to the unit to get some help they refused. That pretty much sums up the treatment that he received there.
My wife had to take another leave of absence from work so that she could care for him while we (she) attempted to find a suitable residential placement for him. During his stay in the hospital there was of course another meeting with lots of attorneys and agencies. The head of the hospital department, trying to get some movement, stated that he was scared to go into a room with Lucas due to his behavior. He stressed that the agencies really need to provide services, which Lucas had not received thus far and that Lucas’s stay at the hospital would be short term. This of course backfired and the Regional Center withdrew all services because Lucas was deemed too dangerous to serve. They however did not have a problem leaving him at home with my wife, alone, indefinitely.
My wife single handedly performed a nation wide search for a suitable residential placement. Due to the complexity of Lucas’s profile there were only a handful of prospective placements (three to be exact). We were flat-out turned down by some due to Lucas having diabetes (and this still happens today). We flew all over the US on our own dime reviewing the prospects. Lucas was accepted and was just about to be admitted to one placement when they found out that we had high expectations for his recovery (that he would learn to read and eventually be able to live independently) and they said no way. What they actually did was send us an email in the afternoon after a meeting that we had with them stating that he was no longer accepted. The meeting was on a Friday and he was to start the following Monday.
So now we’re in scramble mode. My wife’s leave of absence is ending and she has to go back to work.
Now some might say why didn’t she just stay home with him and give him the care that he needed? In response I would ask if your child developed cancer or some other disease that required highly trained specialists would you try to care for him yourself or would you seek to obtain the best help that you could find?
The placement that he did end up in was our last choice and the concerns that we had were justified but we had no other choice but to send him there.
The following week Lucas was admitted into residential placement. Eventually over time, all of our concerns came to pass, unfortunately, and Lucas had to be removed due to abuse.
2006
The last time that we went to visit Lucas at the residential placement the school called us on our way there from the airport. Lucas had been restrained the prior weekend and their incident report had mentioned “minor” scrapes and scratches. They called to let us know that Lucas’s injuries were more severe than they had first thought and that “when they took the bandages off,” they noticed that Lucas had severe injuries from the restraining incident. You can imagine our state of mind on the hour-long trip to the school. When we arrived at the school we could not believe what we saw. The scary part was that the staff seemed unphased by it and talked around it like it was no big deal. The emergency room doctor and Child and Family Services thought otherwise. Oh, and the school had not sought the advice of an independent doctor, they only used their own.
We spent the next two days in the emergency room and with the Department of Child and Family Services. We were advised NOT to take him back there by both the emergency room doctor and the Department of Child and Family Services. So, after spending two days of our visit in the emergency room and a day with Child and Family services we made plans to bring him home.
The district did not agree with this and instructed us to return him to the residential placement until they had time to do an investigation, which would take some time. Their letters and emails told us not to “unilaterally” remove him and that they did not concur with our position. Being concerned parents we ignored their direction. For months Lucas had acted apprehensive about returning to the school during our visits. We now knew why.
This time I took a leave of absence from work to care for Lucas. As it happened, the same weekend that we removed Lucas from this placement, another placement that we had previously applied to some 9 months earlier became available and we notified the district. We thought that Lucas would be transitioned immediately to the new placement (after review and acceptance by us) but we were wrong. The district dragged it out for 3 months for no reason whatsoever other than to punish us for caring about Lucas and being concerned parents. One of their reasons was to complete their “investigation,” but this never occurred. The district maintains to this day that the placement was appropriate and that we prematurely removed Lucas for no good reason. When you look at the pictures, do you agree with them?
After three months Lucas was finally admitted to the new residential placement. It was not perfect by any means but was a much better school with much better people than the first. The district made promises that Lucas would get what he needed. More broken promises.
Although this placement was better it still had many shortcomings that could have been corrected but no one was interested in doing that and they kept telling us that Lucas was getting everything that he needed, even though things were getting worse.
2007
We were trying to bring him home again so that he could finally get what he needed. For the first 2 years everyone kept telling us that they would review his progress and plan his return based on that. The only problem with this approach was that it was the blind leading the blind. Lucas had no peer group and no friends at the placement. Although they liked him they had no idea what to do with him or how to serve him. We had provided hundreds of pages of assessments and documentation before his admission but again, it was never read or understood and it held many of the answers that had been determined time and time again by previous assessments.
2008
Eventually, we had a consultant go and review the program. The consultant found additional shortcomings that we did not. Shortly after the consultant had reviewed the program, the school notified us that they wanted Lucas discharged in 45 days. Evidently, they realized that they were not meeting Lucas’s needs and he was regressing rapidly. He was getting bigger, was very athletic (none of the other students where like him) and it was becoming more and more painfully obvious that he did not belong there.
To buy some time, the school agreed to keep Lucas until the local program (which we had been working to put together with the district) was in place. This took a long time as the agencies did what they usually do, nothing (and their still doing nothing).
2009
We had another consultant that was to provide the behavioral component travel to the school to assess Lucas. The consultant found many of the same issues in addition to others. Things were continuing to deteriorate.
One morning after having a nice weekend we got an email to call the school. It was Monday morning about 10:30 AM and we were both at work. We called the school and spoke with the director and the behavioral staff. They told us that there had been an incident and that they were going to discharge Lucas in 30 minutes by Police escort to the local hospital psychiatric ward. This was a difficult situation as we were 1,500 miles away from the school. I immediately had to drop everything and get a flight out that afternoon to go and get Lucas and bring him home, to again, no services or school program. In the meantime while I was in route, my wife continued to communicate with the school whereupon they notified her that things were not going as they had planned for Lucas’s discharge. For one, the police would not come to escort him to the hospital because they did not do that type of thing. Second, the hospital did not have any room for him. They attempted to place him in a state hospital, but that was 3 hours away by car and Lucas required medical support for the trip. So, the school was at a loss for where they could send him.
All this time Lucas was just fine. He was playing, not upset, and was doing his normal routine. Eventually, my wife discussed with the school that I was on my way to pick him up. Once they learned this they stated that they would hold him until I got there, which was the next day. This was a great relief for the school since they had no other option. My wife also notified the district and all the other agencies that Lucas was coming home and that he needed a program immediately. Again, the agencies did nothing, as usual.
Once home, we got care for Lucas and started to line up services without any assistance from the district or other agencies. We immediately placed Lucas into the reading program that he had needed since 2002 (per our independent assessments) that is, against the advice of the district, and any other services that he could tolerate.
2010
Where we are today:
Lucas has been home for almost a year (going on 10 months) since his abrupt discharge from the last placement and the district has done nothing to put a program together for him. In fact, the district has stated, in writing, that the reason that Lucas is home is be cause we “prematurely” removed him from the school, even though they have a letter from the residential placement stating that Lucas was discharged and why. We have continued to pay for his aide and transportation to the reading program. The district is paying for the reading program, but that is all they are paying for, and the only reason that they are pay for that is because we were going to take him there with or without their assistance. They told us when Lucas came home that we should not take him there. We pay for everything else that he is getting in the way of education services.
Lucas has attended the reading program and has not missed one day due to behavior. The reading program (Lindamood-Bell) I cannot say enough about. They have the highest quality people and management and know what they are doing. We simply send him there and they know exactly what to do. They are teamed with the aide that we trained specifically to manage Lucas and he too does this very effectively, so we know that it can be done. This is not to say that there are not any difficulties, but they are managed effectively and Lucas is making progress, real progress, for the first time in 10 years. Lucas was never on the board (score board) for reading comprehension, in 10 years of public school. After a few months of Lindamood-Bell he finally had a comprehension score and is moving onward and upward and progressing nicely.
Unfortunately, because Lucas has not had an ABA program to address his behavior, this has regressed in addition to all of the bad behaviors that were developed in inappropriate residential placements and NPSs.
We have been in due process in one form or another ever since Lucas came into the high school district and the elementary school district before that. The high school district is worse to deal with than the elementary school district ever was. Because they are taking their time, again, we may yet again end up in residential placement, which they are pushing. The problem with residential placement, aside from the obvious, is that there are none that can meet Lucas’s needs.
There are thousands of details and side stories that have been omitted as I have tried to keep it brief. Hopefully, you made it this far. We continue to fight!
The saga continues…

Please email rethinkingautism@gmail.com with any questions or comments.

A Challenge to Jenny McCarthy

Tue, 12 Jan 2010 17:50:30 -0800

Last week, a study came out that showed special diets do nothing to improve the symptoms of autism. On “ABC’s Nightly News”, Diane Sawyer decided to ask Jenny McCarthy for her response. Are you kidding me? I can think of 100 people that could offer a much more educated, thoughtful and pertinent commentary on this subject. Yet, for some reason, Jenny is the go-to girl when it comes to autism. Oprah Winfrey, Larry King and People Magazine are responsible for perpetuating this myth. By showcasing McCarthy, these media outlets have sold the public a bill of goods about autism that just isn’t true. They have fooled the general public into believing that vaccines are the cause of autism; if you change your child’s diet, you can reverse the effects of autism; and that autism is a horrible disease that needs to be eradicated. Wrong, wrong, and wrong. We let this go on because the public loves Jenny and they love her warrior-like devotion to her son. I’d just like to see her use this platform to effect issues that unite the autism community, not divide it. But that is just me.

The Dirty Secret

If anyone decides to write a story that goes against the anti-vax community or DAN doctors, then their life and career could be in danger. Death threats, hate mail and constant abuse go along with anyone who dares to bring up the real issues facing autism today. Few people have angered this movement more than Dr. Paul Offit, a pediatrician that specializes in infectious disease and vaccines, Ari Ne’eman, President of the Autistic Self Advocacy Network, , and Amy Wallace, writer for Wired magazine who published a piece called: An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All. These are just three people who have had their lives threatened and their mailboxes overloaded with abusive mail. I have also been on the receiving end of hateful emails with people suggesting my child be taken from me because I have a different view.

Fast forward to today.

An autistic 5th grader, Zakh Price is charged with multiple felonies. How did it get this far?

There is an extremely important court case in Arkansas right now and no one is covering it. Perhaps it’s because Jenny doesn’t have much to say on the subject. Unless it can sell one of her books or promote her career, then it seems that Jenny couldn’t care less. Maybe she just doesn’t know about it? But if she is the resident expert on autism, then she should.

Well, I care. And so should every other parent, grandparent, sibling or relative of an autistic or disabled child. An 11 year old boy’s future is at stake. Zakh Price is a 5th grader who has been charged with multiple counts of felonious assault against two school district employees. This story contains some of the most important issues facing autistic people today—education and abuse.

According to Examiner.com, On Oct 30th 2009, Zakh exhibited behaviors manifested by his autism, which led to restraints. The police were called. In the process of attempting to restrain him, two staff members were injured and filed felony charges against the 11-year-old child. They cornered him and tried to take him down. He fought back. There were very minor injuries to the principal and teacher. The fifth grader was taken away in handcuffs and booked with juvenile criminals. He has an IQ of 68. There is a website set up to help Zakh’s grandmother fight this case and stop them from institutionalizing this 5th grader. Her repeated attempts to have Zakh evaluated by the school so that they can implement a behavior support plan in the classroom—crucial to any autistic student—have been met with delay and opposition.

I contacted a real advocate on the subject, Paula Durbin-Westby from the Autistic Self Advocacy Network. According to Ms. Durbin-Westby, “the media takes a ‘first responder’ role in issues that call for justice. Injustices are often first reported in the media and then an informed public demands that corrective action be taken. National media attention has been slow to respond to the civil rights issue of restraints and seclusion. Even though a compelling investigation by the General Accounting Office has resulted in the introduction of national legislation, the ongoing plight of individual students such as Zakhqurey Price is avoided. Publicizing Zakh’s case, and others, will encourage the national conversation that needs to be held in order to advance the civil rights of all children, including children with disabilities.”

C’mon Jenny, here is your chance to do something really important in the autism community. Stand up for this issue. Zakh is not the only boy this is happening to. There are many others. And there will be many more until we wake up and start to tackle the real issues facing autistic people today. The autism community and the media need to work together to help bring these topics out in the open so they can be debated fairly. Individual states can work on legislation to protect disabled people and research can go into creating proper behavior support plans and better ways to educate autistic children. It is vital that we open our eyes to this situation.

Jenny, we may disagree on the causation and cure aspects of autism. However, this is an issue that should unite a splintered community and I hope you will join me in trying to bring this case and others like it to the public’s attention. It is a disgrace that we have let it go this far.

Springsteen on Receiving End of Protest

Thu, 12 Nov 2009 21:59:26 -0800

Bruce Springsteen probably isn’t used to being on the receiving end of a protest. But if he is going to support Autism Speaks, then he better get used to it. This Tuesday night, November 17th, outside Carnegie Hall (154 West 57th Street near 7th Ave), there will be a group of autistic self advocates shouting “Nothing About us, Without Us”.
Autism Speaks is holding their “Concert for Autism Speaks” on 11/17 and is supported by celebrities like Jerry Seinfeld and Bruce Springsteen. According to Autism Speaks website, Jamie Foxx, Ellen DeGeneres, Tina Fey, Conan O’Brien, Seth Rogen, Martha Stewart, Katie Couric, Meredith Vieira, Glen Close, Celine Dion, Will Ferrell, Edie Falco, Troy Aikman and Harry Smith are among the committee members supporting this event. Sir Elton John, Senator Al Fraken, Donald and Melania Trump are among those serving as the evening’s honorary Co-Chairs.
C’mon folks. If you live in NYC please show your support by turning up on Tuesday night.
Thanks to ASAN, here is a list of the reasons why many in the autism community are speaking out against Autism Speaks:
1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.
2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks' advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.
3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.
Link to the Joint Letter Against Autism Speaks, signed by over 60 Disability Rights Groups: http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61
If you want to stop eugenics, find out more about Autism Speaks unethical fundraising practices, or plan a protest at their next walk in your hometown, please email rethinkingautism@gmail.com for more information.

The Little Mermaid

Sun, 8 Nov 2009 19:15:11 -0800

I’d like you to meet Tamara.

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Hello. My name is Tamara, and I was born into a world that I didn’t understand.

I knew I was different from the other kids; there was something wrong with me. There had to be something wrong with me—otherwise why would they pick on me like they did? If I was a good human and not a complete jerk I would have friends. I knew this because my mother told me so. Twice I can remember her sitting me down for a big long talk wanting to know why I didn’t have any friends. A teacher did this to me as well.

As if I could help it; as if, if I’d had a choice, I would have chosen to be at the bottom of the pecking order. Who would choose to be the one that is beaten up at recess, pushed and shoved around in the hallway, spit on, verbally battered, relentlessly harassed—a modern day pariah? In the 70s and 80s the blame was mine; it was MY fault that they picked on me because I didn’t act right, though no one ever defined what “acting right” meant.

The kids knew what the adults did not; that there was something wrong with me. They sensed it, and it was not to be tolerated. The only kids who talked to me were the other outcasts, my default friends who sat with me at lunch because they too had no place else where they were welcome. Even among misfits I was a misfit, unable to catch or throw a ball, stuttering when my brain got too far ahead of my mouth, my voracious reading not of Judy Blume and other adolescent fodder but of old, teacher’s edition text books, as well as every history book in the library.

The first time I truly understood that I was different, was when we were given an assignment to take a large sheet of paper home, and draw a map on it using symbols. The teacher instructed us to draw a city, and so that is exactly what I did. I filled up every square inch of the paper with roads, a loop around the city, government buildings, housing, businesses, and signs. It was an 11 x 17 inch mass of pencil lead, smeared here and there where I had added or erased elements, working on it until Sunday evening when it was the most confusing, sprawling metropolis imaginable, with the “key” and symbols on the back because I didn’t want to spare any room in my city for such things.

We got to class that Monday, and we got out our maps… and when I saw the others, I quickly turned mine over lest it become another reason for them to target me for bullying. Their maps were all so neat and large and simple… the pencil lines gently and lightly drawn, creating large blocks of nothingness, but still having met the requirements of the assignment to make a map with symbols and a key. Their beautiful, naturally neat handwriting complemented their uniform shapes and little neighborhoods that at the time made me think of Leave it to Beaver. My map looked like something out of a discombobulated apocalypse in comparison, and I carefully tucked it away beneath the maps of the kids behind me so that no one else would see as we passed them forward to turn them in.

I had always known that humans were strange, that I didn’t understand them, but that was the first time I realized that it was ME. I was the one who was different, I really was the one with the problem, and no matter how hard I tried, I was never able to be one of them. I cried the first time I heard “Part of Your World” from Disney's The Little Mermaid, and it still makes me cry sometimes. It summed up so perfectly how I felt, how desperately I wanted to be human, how very much I wanted to understand. I wanted to be human, to be what everyone else wanted me to be so they would love me… but I knew I would never pull it off.

I knew I had all kinds of problems—sensory issues like hyper-sensitivity to bright light and extreme temperatures. Sudden, loud noises or being startled was enough to set off a meltdown. Clothes had to fit a certain way and couldn’t be the least bit rough or scratchy. I had abnormal attachments to objects, carrying them with me wherever I went, and I never failed to stop to watch something spin or go around in a circle. I obsessively drew things related to whatever my interests were at the time; I don’t know how many floor plans of space ships and aerial views of antebellum plantations I drew. I couldn’t respond in real time conversations to suit humans, so I stopped trying. Then they thought I was being snobbish because I was being quiet, when in reality I was just trying to keep from saying something they might find offensive. They placed such high value on the truth, yet when I told it everyone around me was horrified, so I learned to lie… and got in trouble when I got caught lying.

They asked me how I was, making their small talk, but they didn’t want the real answer. I spent much of my time watching other people, learning to go through the motions, to duplicate whatever it was they were doing—but never learning the meaning. I got frustrated in this environment, easily losing my temper and having what I later found out were “meltdowns.” I wrote stories for my own amusement—stories people loved and begged me for, because they were entertaining. I gave up on schoolwork that bored me, something that got me nothing but trouble at home unless I got an A. Instead I wrote stories, because they were something the humans liked, and when I was writing, it was an escape from a world that I didn’t understand.

I got married at 19, way too young, and took minimum wage retail jobs among others who, for whatever reason, had not managed to make it in life, or who had been marginalized like me. It was here that for the first time I found some level of acceptance, and it’s one reason why I think autistic adults take these jobs that are so far beneath their abilities. Here was a set of people far more willing to accept my quirks and like me for who I was, because they too had been rejected. Here I had a makeshift family, and I didn’t have to get through an awkward interview or give personal references I simply did not have.

When I was 34 my mother called me at work one afternoon and said, “Tammy, I think I know what your problem is!” Great, I thought, what is it this time, Mom? Not enough Vitamin D? Too much sugar in my diet? “I think you’re autistic!” This did not go over well; as images of Dustin Hoffman in Rain Man ran through my head, I told her I was not retarded, and I blew it off. My mother, however, was tenacious, sending me links to these online tests and articles, and as I read about autism, particularly Asperger’s Syndrome, and high-functioning autistics, I slowly came to understand that this was me.

It was a relief to get a diagnosis because finally it was OK to BE ME. I wasn’t a jerk; this was just the way my brain worked. I understood why I had these meltdowns and how to deal with them. My husband and I were able to make adjustments to the way we live and how we deal with family so that I don’t get overloaded. I understood for the first time how special my gifts for writing and learning really are, that the things I do are NOT just something that anyone can do, that it’s OK to not want to go out with people and to have all this quiet time by myself.

I still live in a world that I don’t understand, and I probably never will. However, knowing that I am autistic has made all the difference, because I finally understand the blessing I have been given. I would not change a single thing about myself, and I thank God for this brain and the gifts He gave me. As autistic people and their families move to speak for themselves, I want to speak with them. I feel that as a high-functioning autistic that can speak and pass for normal, I have the best of both worlds—a way to give both autistics and non-autistics the chance I never had… an opportunity to understand one another.

Please email rethinkingautism@gmail.com with any questions or comments.