Abilify MyCite – NOS Magazine

When I have been blocked or censored from internet sites or Facebook pages for voicing an opinion that may not agree with the particular agency, I realize that I must have hit on something that is real and true that those groups or people do not want others to know about.

This censorship is destructive and prohibits progess, learning and collaboration and understanding.  This is very disturbing to me especially when this censorship is practiced by those who claim to be neurodivergent and advocate for self expression.

The most recent issue is in regards to an opinion essay written in NOS Magazine  which claimed coercion and forced ingestion of a new type of medication and how this will be used to put people in institutions.  The author claims that these psychiatric meds will be used with no consent and the side effects will be ignored while the client will be forced to be tracked with the medication.

Abilify MyCite

 

The scenario that the author describes is far from reality and it is clear the author does not understand how the medication sensor works or how it could be a benefit for those who may choose this type of medication.  The author writes from a perspective of paranoia and persecution.

I did reply to NOS Magaine on their Facebook page regarding the essay  “Human Rights Lawyer Shain M. Neumeier explains the terrifying implications of Abilify MyCite, a new drug that tracks compliance” and my comment was visible for one day.  The magazine editor even replied and stated that they publish point/counter point opinions and gave me information on submitting my counter point.  Both of those comments are now removed from the Facebook page and I have been blocked from interacting with that page.  My comment that I posted to the NOS Blog post was not approved by the moderator.

If the magazine publishes point/counter point opinions then why do they censor comments that may have a question or concern with what they wrote – particularly when it applies to the neurodivergent population?

My comment on Facebook was clarifying facts about the medication and that monitoring needs to be done for medications, side effects, bodily systems for ANYONE taking these medications – not just for the neurodiverse population.  A very different picture than waht Shain M. Neumeier painted.

I am awaiting a response from the editor explaining to me what was offensive and violated thier publishing rules.  My expectation is that I will not get a response.

Below is my opinion about this medication and a link to the New York Times article that Shain M. Neumeier referenced also in the NOS Magazine opinion essay.

This is certainly an interesting viewpoint on medication. The presumed restrictions and violations that this author writes regarding issues of “tracking medications” especially for neurodivergent people, seems absurd to me.

This is not about “forcing” people to take medications against their consent, or to cause people to experience undue side-effects. When taking these medications, people need to be monitored – no matter what “type” of person you are. This is one such tool that can be used – by choice – for those who desire it.

Many medications are monitored with blood levels to ensure that the person has at least a therapeutic range and certainly that they do not have toxic blood levels of a certain medications- not just medications that are prescribed for mental health issues. Other illnesses may be monitored by a variety of blood tests – glucose, red blood cells, platelets, ammonia, potassium, magnesium – just to name a few bodily functions that are monitored when taking medications. Again, this has NOTHING to do with being neurotypical or not – it has to do with being a human being and taking medications responsibily and appropriately to receive the best benefit.

In fact, many people may not even be aware that they have toxic levels of medications in their system and these monitoring tests are used to assess a person’s health and well being.

Also this author is assuming that this monitoring is “involuntary” – that is not necessarily the case. In fact, I had a patient once who requested to have surveillance of his medication administration to ensure that he was taking it correctly because he had stopped his medication and experienced psychotic episodes. He didn’t want that to happen again and wanted to stay out of the hospital. This was a method that worked for him. Again, it was his choice to have this electronic monitoring done of his medications.

Read the article regarding Abilify MyCite as referenced in the NOS article. Below are a couple of quotes –

“Patients who agree to take the digital medication, a version of the antipsychotic Abilify, can sign consent forms allowing their doctors and up to four other people, including family members, to receive electronic data showing the date and time pills are ingested.

A smartphone app will let them block recipients anytime they change their mind. Although voluntary, the technology is still likely to prompt questions about privacy and whether patients might feel pressure to take medication in a form their doctors can monitor.”

It is odd that a medication that is used primarily for schizophrenia has this digital technology and it may not be the optimal population for this. The article also addresses this issue.

“Asked whether it might be used in circumstances like probation or involuntary hospitalization, Otsuka officials said that was not their intention or expectation, partly because Abilify MyCite only works if patients want to use the patch and app”.

Some people will welcome this additional tool to help them remember to take their medication – others don’t need that reminder or would not want to use it. That is their choice.

This could also be a useful tool to ensure that the caregivers are providing the medication as prescribed. I know that my son lived in a facility in which the nurses signed off on medications they say they administered. I questioned them many times since my son was not recieving the expected and intended benefit of the medications which then led to more complications, stronger and more medications being prescribed. Finally, after he moved out and some of his conditions improved dramatically (the new caregivers were administering the medications appropriately) I requested the dispensed records from pharmacy, I realized that I was correct in my concern.

Such a system as with the Abilify MyCite would have picked up the extreme medication errors that my son experienced.

Abilify MyCite – First Digital Pill

“Fiery exchange” or “healthy discussion?”

I am sharing this blog and adding my comments here because NOS Magazine tends to censor comments that may disagree with some of their opinions.  I actually think this was a healthy discussion rather than a “fiery exchange” or terms that I have read about the conversation.

The comment that I attempted to post on NOS Magazine is below:

“I would like to respond to this article and to the IACC also with regards to the issues raised regarding the spectrum and does the diagnosis of “Autism Spectrum Disorder” really mean anything at all anymore.
After the engaging conversation between some self-advocates who identify as “autistics”, a mother of a severely affected child with autism and also guardian of her brother with autism, Director Dr. Joshua Gordon and Dr. Geraldine Dawson, it became very clear that these members realize there are some major problems with trying to reign in on the needs of this extremely heterogeneous population.
Dr. Gordon repeatedly stated comments about having a situation where we don’t know a better way to describe autism except as a spectrum and that we do not have diagnostic differences to create different labels within the spectrum.
Sam Crane then mentioned that the DSM V now uses the term “spectrum” because it also can be described as ASD with a specific characteristic. Dr. Geraldine Dawson then clarified that comment further by explaining that in the DSM V the diagnosis of ASD was meant to be used with specifiers.
• With or without accompanying intellectual impairment
• With or without accompanying language impairment
• Associated with a known medical or genetic condition or environmental factor
• Associated with another neurodevelopmental, mental, or behavioral disorder
• With catatonia
Even without the above specifiers there is also criteria within ASD that indicate 3 different severity levels based on social communication and restricted behaviors.
I would also like to add that in addition to the above information there are also many genetic syndromes which have autism included in some of the characteristics of that syndrome. The primary diagnosis for these people would be the syndrome and autism would be a secondary diagnosis.

For instance, I work with two young men about the same age who both have Fragile X syndrome. One of these men has autism and the other one doesn’t. There is a huge difference in their level of functioning based on the autism diagnosis. This person needs extensive supports (24-hour residential care) while the person without autism continues to live with his parents, has a job and is out and about in the community independently shopping and getting around on the bus.
Some of these syndromes also cause an intellectual disability and/or schizophrenia or other mental health disability. From what I have seen it is the people with a combination of various diagnoses in the DSM 5 that tend to need the most intensive support and may also be the ones who are not able to advocate for their own needs. This is why it is critical to have parent/guardians/caregivers or other advocates come to the table to speak on their behalf.

Update:  As I expected my comment was not allowed to be published on the NOS blogsite.  They practice censorship and exclusionary actions and do not tolerate “Neurodiversity” if it does not agree with their opinion.

https://iacc.hhs.gov/about-iacc/subcommittees/resources/dsm5-diagnostic-criteria.shtml#autism-spectrum-disorder

On Tuesday, a fiery exchange took place between autistic advocates and autism parents the quarterly Interagency Autism Coordinating Committee meeting about inclusion, civil rights, and the usefulness (or lack thereof) of functioning labels. IACC is a government advisory panel responsible for setting federal research priorities. Only three of the 31 IACC members are autistic themselves.…

via Autistic Advocates Clash with Autism Parents at Government Committee Meeting — NOS Magazine

Just my opinion

Caution – this is just my opinion – you may or may not agree, may be offended or not – but I own it.  You are allowed to comment, I won’t censor if you do not agree with me or if you hurt my feelings – I may tell you but I won’t censor your opinion.

When a person writes an “OPINION” essay and it is published  in a public online magazine it becomes open for discussion.  Some people who write “opinion” pieces become upset or hurt at comments that may be generated from readers who express their own opinion or have questions for the author of the original “OPINION” piece.

Isn’t  one objective of an “OPINION” essay to gather comments and hear what others may have to say?  It may be an opportunity to learn from others who may have a different opinion or to learn a different perspective from those who share the same opinion.

This issue is one that I have faced over and over again with regards to advocating for people with intellectual and developmental disabilities. Apparently there is a “right” opinion and if your opinion is different than that “right” opinion your comments may be deleted and you may be banned from further discussion.

This censorship only causes harm to those who the so-called advocates are supposedly advocating for.  Without an open discussion regarding various viewpoints people will be isolated and unable to work through problems that may exist.  Ignoring barriers to quality care and efforts to help support people in having a meaningful life only only makes the situation worse.  Unless you live in a fantasy world.

 

 

“Take your opinions elsewhere”

NOS Magazine recently published an opinion piece written by Ivanova Smith regarding the issue of “Mental Age Theory”

NOS Magazine

One would think that being a magazine devoted to neurodiversity and open to “publishing opinions from many corners of the neurodiversity community” that censorship and blocking participation from advocates in discussions is counter to the mission.  Apparently, only those neurodiverse in the “right” way are allowed to comment and exchange opinions or answer questions from others.

Saskia Davis, published  her thoughts about the article above on NOS Magazine.  There was a follow-up comment to which Saskia wanted to reply and it was then that she realized that her post had disappeared and her reply was not able to be posted either.

I offered to publish Saskia’s responses on this site because I think they are worthy of being read and understood.  The first comment can be read on Developmental Disabilities Exchange.    The follow up comment is below in this post.

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NOS Magazine is a news and commentary source for thought and analysis about neurodiversity culture and representation. Expect long form journalism, reviews of pop culture, and more. NOS stands for ‘Not Otherwise Specified,’ a tongue-in-cheek reference to when a condition does not strictly fit the diagnostic criteria, or is in some way out of the ordinary.

Opinions: Not Otherwise Specified

Stories: Not Otherwise Specified

Perspectives: Not Otherwise Specified”

NOS Magazine is a publication for the neurodiversity community. As such, people who identify as a part of the neurodiversity community and/or who are neurodivergent in some fashion will be given publication preference in order to ensure that this publication is a voice of the community. We recognize and respect self-diagnosis as valid and do not have a standard of who is “disabled enough” to count.

Opinion

Published pieces are not necessarily the opinion of NOS Magazine. We are open to publishing opinions from many corners of the neurodiversity community.

 

Responding to: (from Saskia Davis)
Ivanova Smith
September 11, 2017 at 7:25 pm
“I going to share some examples people can to explain their love one support needs that don’t use mental age theory. I some people being asking me for alternatives……..” (http://nosmag.org/mental-age-theory-hurts-people-with-intellectual-disabilities/

I wrote:
“These are helpful suggestions.  How would you help a person understand the level of constant,  total care that is required for the support of someone who lacks the capacity to make safe decisions, lacks verbal ability to express what is wrong, and what s/he wants,  but has enough, almost understandable vocabulary to  frequently repeat the same few phrases,  can’t safely mobilize herself anywhere,  is absolutely distractable, and doesn’t  care to focus on anything except neckties or hats or cars, will choke due to putting food in her or his mouth before swallowing the last bite  if allowed to self feed, except that is impossible because s/he can’t load her own spoon, but can hold a glass and will choke if not dissuaded from laughing during drinking, while self-feeding, gets food all over her/his face,  body and clothes, laughs with delight when something or someone  falls on the floor  and finds it great fun to empty surfaces of their contents to see them fall,  or someone who can carry on a delightful, if limited conversation  but, who, if asked questions  or when another person  wants his food  or when he can’t have food from someone else’s plate, will throw a 20 minute  tantrum just like those that two year olds throw,   (only this person is 6 feet tall and weighs 160 pounds)  hollering, throwing himself on the floor, writhing, kicking screaming, hitting, biting, and who   has been unable to learn to tie his shoes or put them on the correct feet and who remains incontinent at the age of 21 despite many patient years of family members and caregivers’ attempts to help him achieve continence. In few enough words so that the reader or listener will stay engaged to understand the other points you are trying to make, how do you give a picture of such a person that allows another  to understand the intensive level of care  and careful planning for support that is needed and the struggles the person endures in order to make progress?  Thanks in advance for your suggestions.”

 

The title of this post is a quote from Sara Luterman, editor of NOS Magazine in answer to my question regarding removal of my own posts.

About us, Without us

 

This week I have had the opportunity to really see what trained self-advocates think of those who are not able to speak and share their own experiences or opinions.  I have been told over and over again by these trained self-advocates that as a parent/guardian, that my observations are self-serving and that “Nothing about us, without us”, the catch phase of self-advocates has nothing to do with guardians.

Sara Luterman for blog

 

Sara Luterman, editor of NOS Magazine, wrote “”Nothing about us without us” refers to disabled people. Since you are not disabled, it’s not about you.” Ms. Luterman sent me a link to an article she wrote in The Thinking Person’s Guide to Autism  and then added “You may find this helpful, particularly, ” Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy.”  Thank you, Ms. Luterman for letting me know what you think of people I know and love.

Comments from NOS editor Sara Luterman

Ms. Luterman makes many assumptions regarding the role of a guardian and clearly does not understand the legal and court appointed responsibility that a guardian has – that is to represent the person in their best interest.  If this role is denied, I’m curious how these trained self-advocates involve and understand those who are not able to voice their opinions to those who do not understand them.  While pushing their agenda forward without understanding or allowing those with guardians to share their perspective and needs they are practicing discrimination against those more vulnerable than the self-advocates who can read, write and speak themselves.

The censorship that is practiced by several groups of trained self-advocates makes it appear that there is unanimity in their advocacy for people with intellectual and developmental disabilities.  In fact, the opposite is true.  Even when people write “I am interested in others perspective on this, other than my own” the editor will not allow another perspective to be shared.

This is one reason that I write on this blog – to share other opinions and learn from others.  I have learned a great deal by the fact that I have been blocked from several sites that are run by trained self-advocates.  They have no intention of understanding the needs of others and are acting like selfish adolescents who are rebelling against their parents.   Will they continue on their developmental path to adulthood?

Comments to NOS Magazine regarding Mental Age Theory Sept 2017

 

NOS Magazine would not publish a comment responding to another parent asking for others perspective

About us, Without us

 

This week I have had the opportunity to really see what trained self-advocates think of those who are not able to speak and share their own experiences or opinions.  I have been told over and over again by these trained self-advocates that as a parent/guardian, that my observations are self-serving and that “Nothing about us, without us”, the catch phase of self-advocates has nothing to do with guardians.

Sara Luterman for blog

 

Sara Luterman, editor of NOS Magazine, wrote “”Nothing about us without us” refers to disabled people. Since you are not disabled, it’s not about you.” Ms. Luterman sent me a link to an article she wrote in The Thinking Person’s Guide to Autism  and then added “You may find this helpful, particularly, ” Just because someone has difficulty voicing a coherent opinion, it doesn’t mean you get to hoist him or her up like some kind of grotesque ventriloquist dummy.”  Thank you, Ms. Luterman for letting me know what you think of people I know and love.

Comments from NOS editor Sara Luterman

Ms. Luterman makes many assumptions regarding the role of a guardian and clearly does not understand the legal and court appointed responsibility that a guardian has – that is to represent the person in their best interest.  If this role is denied, I’m curious how these trained self-advocates involve and understand those who are not able to voice their opinions to those who do not understand them.  While pushing their agenda forward without understanding or allowing those with guardians to share their perspective and needs they are practicing discrimination against those more vulnerable than the self-advocates who can read, write and speak themselves.

The censorship that is practiced by several groups of trained self-advocates makes it appear that there is unanimity in their advocacy for people with intellectual and developmental disabilities.  In fact, the opposite is true.  Even when people write “I am interested in others perspective on this, other than my own” the editor will not allow another perspective to be shared.

This is one reason that I write on this blog – to share other opinions and learn from others.  I have learned a great deal by the fact that I have been blocked from several sites that are run by trained self-advocates.  They have no intention of understanding the needs of others and are acting like selfish adolescents who are rebelling against their parents.   Will they continue on their developmental path to adulthood?

Comments to NOS Magazine regarding Mental Age Theory Sept 2017

 

NOS Magazine would not publish a comment responding to another parent asking for others perspective

Mental Age Theory – Censored

Posting as a follow up to my previous post.  Apparently the editor of NOS Magazine did not approve of the comments that I and another advocate posted.  The comments have been deleted.  I have not received an answer from the editor regarding the reason for deletion.

In trying to describe situations and characteristics we often use similes and metaphors to
help those who are not familiar with jargon understand the situation. When using these
figures of speech, we are in no way belittling the person or saying that person is any less or more than anyone else. These figures of speech are extremely common and are used
throughout all types of writing and speech.
Maybe this is part of the problem with trying to describe a person. When saying that a
“person acts like a toddler ” we are using a simile – it is not saying that person is a toddler at all. It is describing that particular behavior at that particular moment or situation. In the case of my son, his behavior or understanding may not be typical for a 24-year-old in that particular situation.
One could also say that “he is a toddler” which is a metaphor. The simple definition of a
metaphor is that a metaphor states that one thing IS another thing but the statement is not literal – it is just figurative. Many may misinterpret this as the speaker actually saying this is true when in the fact the speaker was using a metaphor.
In the issues of trying to describe the support needs (be it physical, intellectual, behavioral or other) we often need to use similes to help others who are unfamiliar with that person or situation be able to grasp the magnitude of the need. Again, in no way does this figure of speech demean the person being spoken about but can help those understand the level of supports that may be needed to help that person be successful.
One other example of this is referring to a person with progeria as having the body like an old person. The person with progeria is a child but their bodies age prematurely and they have many health issues that are typically seen in the geriatric population. I wonder if people with progeria are offended if they are refered to as having the body of an old person?
Using similes and metaphors as figures of speech is a common and needed practice to help people understand others. We all have reference ideas in our heads about various things.
I’m sorry that people may not understand this issue but that is how the English language
works – it’s not the only confusing thing about this language

I have had contact with the author of the article “Mental Age Theory Hurts People with Intellectual Disabilities” and I hope to meet with her and my son in the near future.  This is my attempt at trying to bridge the gap that is present due to what I refer to as “motive asymmetry”

Below is a link to the deleted comments – these are my comments and responses that were deleted.

NOS deleted my comments on mental age Sept 2017