Self-Inflicted Human Rights Violations?

Last week, I posted an article, "CENSORED and Removed From Facebook Group for Posting These Five Facts." I wrote how the Queens Special Kids Facebook Group administrator removed me only for writing five court facts including page, reference numbers and quotes, responding to a discussion regarding the court decision on my brother Matthew's school, Judge Rotenberg Center, on the use of two second skin shocks, which stopped Matthew's life-threatening head banging requiring surgery.

Regarding the skin shocks, the administrator wrote, "[T]o me, this is a violation of human rights." Many families including myself, JRC staff, JRC attorneys, and even Massachusetts court judges before ordering the treatment, have tried the shock themselves. I tried it because I wanted to feel for myself what exactly my brother experienced. If the skin shocks are "a violation of human rights" then we have all committed self-inflicted human rights violations. A few weeks ago I visited Matthew and he was agitated with me and after returning to JRC when I had a flat tire. While JRC staff are accused of human rights violations, Matthew's case manager was emailing me until 12:30AM to find out what happened to see how she can help.

Last post I mentioned how the administrator stated that she "feel[s]" for us, but I do not think any anti-aversive activist would volunteer to try Matthew's identical twin brother Stuart's 20 medication regimen for a day and see what that feels like. Stuart is in a group home in NY and cannot obtain access to effective treatment.

Anti-aversive activists will state that there are other alternative treatments to eliminate these life-threatening behaviors. Unlike my book with 361 footnotes discussing multiple research studies showing that that other treatments are not always effective, not one of these anti-aversive activists cites a research study to defend their position- because they can't. While anti-aversive activists state they "feel" for us, what they really do is treat us as ignorant fools incapable of providing informed consents, even though many of the family members are MDs (including myself) PhDs, and JDs.

My mother and Matthew just got back from a trip to Niagara Falls. Stuart could not go due to his behaviors and Matthew missed him. Even though they are identical twins and the best of friends, due to the anti-aversive activists preventing Matthew from having skin shock in NY and Stuart from having effective treatment, they must live hundreds of miles apart and couldn't even spend a few days together on a trip. This is the true human rights violation.

PS: Last night I added a sentence to my Facebook Group "Special Needs Resources NY," stating "ALL OPINIONS ARE WELCOME HERE." Whether I agree or disagree, as long as there is nothing hateful or containing personal attacks, I do not want anyone to ever feel excluded because their views.

CENSORED and Removed From Facebook Group for Posting Five Facts

Four days ago on the Queens Special Kids Facebook page, someone posted a link to an article, "Massachusetts school can continue using electic shocks on special needs students, judge rules."

The administrator wrote, "It can be discussed, but not in a way that is lauding the ruling or promoting or inviting promotion or legitimatizing of these practices." I knew I according to the rules I couldn't post how the two second skin shock saved my brother's life from his head banging requiring surgery, how he now has a paid job and is off medications for over 29 years, and how his identical twin who cold not receive effective treatment ended up on twenty medications and has no life. However, I thought at least I cold post five court facts.

I posted "Facts in the Court Decision," and then I wrote "(On Defendents's MOtion Under Probate and Family Court Rule 60 and Mass. Civ.P. 60(b) (5) to Vacate Consent Decree, Doctet No. 86E-0018-GI)," and "I am including some behaviors of Massachusetts DDS which the judge Noted:" For all else that I posted verbatim, please see my last blog post, "JRC Prevails in Court, Media, and Bloggers Stating We Should be Killed," for which I wrote the same five facts including quotes directly from the court decision, page 16, no. 79, page 22, no. 105, page 28, no. 127, page 35, no. 173 and page 34, no. 168.

A few minutes after posting it, the administrator PMeD me that she removed me from the group. while she wrote in a comment on her Facebook page earlier that she "feel[s] for family memebers who feel they have no other good options," I don't understand how you can remove a mother and a sister of individuals with autism if you truly feel for them, just for writing a few facts. This just makes me feel marginalized and isolated.

Apparently, I could not even write facts that conflicted with the admnistrator's agenda. How ironic that the people who are personally involved with this treatment are the ones who are banned from commenting.

JRC Prevails in Court, Media, and Bloggers Stating We Should be Killed

In Massachusetts Trial Court, June 20, 2018, a judge ruled that Massachusetts Department of Developmental Services could not end the consent decree permitting some students to receive a two second skin shock, a shock which I tried myself, and saved my brother's life from his life-threatening head banging, (On Defendant's Motion Under Probate and Family Court Rule 60 and Mass. R. Civ. P. 60(b)(5) to Vacate Consent Decree, Docket No. 86E-0018-GI).

I am including some behaviors of Massachusetts DDS which the judge noted:

Page 16, no. 79: The sentence "the number of persons who conceivably might require such treatment approach was so small that one program for the entire nation would be more than sufficient to meet any potential need," which was from a national expert who Massachusetts consulted with, was removed from the state memo "Policy Review of Aversive Interventions"

Page 22, no. 105: (quoted): The Massachusetts Attorney Meacham deleted a portion of the prior version of the report that reported on an interview with a "consultant who oversees the annual 'clearance' process from JRC with the U.S. Food and Drug Administration (FDA)." The deleted section stated that according to the consultant, "JRC does not need to obtain FDA approval for list the [GED] devices because it does not intend to sell them; however, JRC continues to keep current with this clearance process."

Page 28, no. 127: Dr. Philip Levendusky, Chair of Psychology Department and Co-Director of Training at McLean Hospital, Associate Professor of Psychology in the Department of Psychiatry at Harvard Medical School, who was hired by Massachusetts, "admitted on Day 20 of the hearing that he gave untrue testimony under oath during his initial testimony."

Page 35, no. 173: This notes that former JRC students and Massachusetts DDS staff who tried the shock testified the only side effect was temporary pain.

Page 34, 168: Dr. James T. McCracken, authored a study on Risperdal, which led to FDA approval for autism and includes in the approval "deliberate self-injuriousness." "Dr. McCracken admitted at the hearing that the study did not demonstrate the effectiveness of Risperdal specifically with respect to treat self-injurious behavior. In addition, Dr. McCracken admitted that in a recent lecture given by him, his presentation included that neither Risperdal nor Abilify [the only meds FDA approved for irritability in autism] reduced self-injurious behavior as compared to a placebo within the study, and that this was a 'big disappointment'".

The court also notes how the shock devices has been effective to treat life-threatening behaviors when nothing else worked.

After this court decision, some so called liberal media outlets on Facebook have been writing some sentences or having a one minute plus soundbite to condemn this decision. The soundbite took less than a week to make unlike my book which took over nine years to write discussing research at length with 361 footnotes. One of media outlets states they will delete anyone writing anything positive about JRC, so family members are silenced, so much for freedom of speech. Another one is allowing blog posts stating that JRC family members and staff should be executed or have a bullet put to our heads. By allowing these posts advocating violence or silencing dissent, their similarities with Alt-Right groups advocating for violence or silencing opposition far outweigh any differences they have.

More Neglect at My Brother's NY Residence

One week ago, my mother took my brother Stuart to visit his twin Matthew at the Judge Rotenberg Center in Massachusetts for a long weekend. Due to Stuart's behaviors, my mother had not been able to bring him to see his twin for months. One night my mother called me from the hotel telling me that Stuart's underwear were all ripped. Furthermore, Stuart told her he packed himself and he did not bring enough clothes despite that the staff was supposed to help him pack. Stuart then announced that for months, he only changes his underwear on Fridays, Sundays and Wednesdays, when he showers, and he sleeps with them all night.

We complained to the staff, but could only make progress when my mother came down to his residence today and threw out all his torn underwear, so he would start to wear new ones. After my mother's and my insistence, he is now changing his underwear six days a week. He won't agree to change it on Saturdays.

So for all those so called human rights activists against aversives, where is their outrage about individuals with special needs wearing dirty torn clothes consistently only until a real advocate, in this case my mother, does something about it? Are they too busy complaining about JRC, that they don't have time to tackle real problems?

Autism =30x Emergency Room Visits

According to a new literature analysis which studied 332 articles autism spectrum disorders, 12 of which were specific to emergency room services, found that children and adolescents with autism had up to 30 times as many emergency room visits compared to individuals without autism, (Sarah Lytle, Andrew Hunt, Sonal Moratschek, Marcie Hall-Mennes, and Martha Sajatovic, "Youth with Autism Spectrum Disorder in the Emergency Department," Journal of Clinical Psychiatry 79, no. 3 (2018): epub ahead of print doi:10.4088/JCP.17411506). For individuals with autism, up to 30% of these visits were for psychiatric/behavioral problems compared to 2% for individuals without autism. Furthermore, individuals with autism often had additional visits or were admitted more to inpatient units than people without autism.

Prior to arriving at the Judge Rotenberg Center, my brother Matthew was repeatedly in the emergency room for his head banging and suturing, and finally had an over five month hospital stay. He used to say, "I live at Lenox Hill Hospital." He even once ran into a quarantined area. Now, after receiving intensive applied behavior analysis (ABA) with seven positive behavior contracts, earning reinforcers all day and as needed supplementary skin shock, (last one over five years ago, although he did have to wear the device after at times to prevent escalation of behaviors), he is a new man with a paid job at school and going on trips. His identical twin brother, Stuart, who never had ABA, has also had multiple ER visits and hospitalizations for his behaviors or medication side effects. My daughter Talia, who has had intensive ABA for years to treat her dangerous behaviors, has never been on psych meds, and I have not taken her to an emergency room for about ten years, after we were in a car accident.

As discussed in a previous post, the most common reasons for psychiatric hospitalization in individuals with autism can be treated with ABA.

Let's fund ABA to cut down on these emergency room visits and hospitalizations. The ABA will definitely be cost effective.