How can I spread awareness of neurodiversity?

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I'm reporting the reality of Autism as it is for some individuals, and defending research and why it is inhumane to suggest that research should be prevented, if there is any potential in providing help for children like these.

Some of these children have been reported to have quite horrifying self injurous behaviors like attempting to gouge their eyes and bite their body parts off.

If one cannot legally restrain them, or successfully modify this behavior through positive or aversive behavioral therapy, cognitive therapy, or any other type of therapy, the only answer that remains is continuous heavy sedation, in an institutional environment.

If there is no institution available to accept and treat a child or young adult with this type of self injurous behavior, options may cease to exist.

While I personally find these aversive therapies, as horrifying scenarios, there are potential worse scenarios, for some of these children, that no one cares to talk about, or likely even think about.

The problem is, there are no good answers for some of these children or individuals with these behaviors; it may be too late for research to provide a better answer for prevention, treatment, or a cure, that prevents these type of self injurous behaviors for these children, but it may not be too late for children in future generations.

And again, I think in the context of scenarios like this, it is inhumane to suggest that the brightest should not be recruited and financially supported to search for any potential positive solutions that may exist.

Thanks. I share something with you. I was diagnosed at 47 also. I served the military for 23 years as a civil servant, but didn't have what it takes to serve in the military.

I'm impressed with your military career. I was humbled by the thousands of military individuals that I met in my career, many of the retired ones as well as active duty.

If I remember correctly, I don't think I have come across anyone here, that has made a full life of active duty military their career.

But, from my experience, there is no doubt that there are quite a few that would come close to an Aspergers Diagnosis that serve in the military, probably even more that seek the structure and security from a government civilian employee job.

I was more comfortable around military folks, than the natives of my community. The military folks seemed to share a common culture, no matter where they were from or who they were. Especially the retired military folks.

I was forced into medical retirement; when I left the military environment, it felt like I lost a thousand family members. I was lucky to have been part of that. I feel your pride of being part of it, shine through your words.

I am sorry, and I am new to this thread and this website, but not to the JRC so I must understand your abnormal beliefs.

That place has hospitalized multiple people under the name of helping others through electric shocks. Are you in favour of this treatment? And if so, why do you defend this cruelty when it has been demonstrated multiple times?

Do you agree with the JRC policy of not publically releasing videos of electric shock treatment when it has hospitalized people? Why is it that you defend treatment that has not been clearly verified as actually assisting autistic people whilst having led to multiple deaths?

Why are you describing the end of this treatment as inhumane when the electric shock treatment at the JRC has often been described as 'barbaric' or words to that effect?

What I do to spread awareness is to correct derogatory and stereotypical terms and comments about different neuropsych disorders and explain what the disorders are really all about. I'm very outspoken and opinionated, especially about neuropsychiatric stigma, so I'm quick to jump all over people who say they're "so OCD" for liking things orderly or who think being bipolar is just being really moody. I couldn't care less what people think of my lecturing and correcting, because it's important enough to me to get the word out regardless of people's reactions. I also write seething messages to TV shows and movies that poorly depict neuropsych disorders. My last big crusade was in boycotting the horribly offensive episode of iCarly called "iLost My Mind." It still burns me how such a tasteless and demeaning episode was meant for CHILDREN!

I can understand that but abuse should never be used simply because there is not a perfect answer.

I have seen nothing in aghogday's posts indicating that it should. There is nothing in any posts that I've seen condoning any such abuse. But what I do see is that he has indicated that we need to act, people are beginning to act, and that there is hope that such abuse will cease. I see nothing wrong with that.

Longshanks

Well i guess somehow I misunderstood but I did not see aghogday saying he opposed of the tequniques either so I was kinda confused on that.

I think that his opposition can be taken for granted. In a more extreme illustration, historians make statements about Hitler killing over six million people and that Stalin killed over 33 million people with out specifially condemning it. That doesn't mean that historians condone what Hitler and Stalin did. There were merely stating a fact. I think it appropriate to assume that certain things can be inferred. I'll admit that I've seen some really twisted thinking on this site - but I don't recall seeing even the most twisted post condoning harm to other people unless it was done in self-defense.

Longshanks

You are reading something into my statement that I am not saying. I did not say anything positive about the abuse of the treatment used at the JRC, nor do I condone any abuse of anyone, anytime, or anyplace. However, I am still concerned about the welfare of what happens to the young adults and children in this program, if no other facilities will accept them.

I am also attempting to report the facts as they exist in an objective way. There is the idea that this therapy has been used in a covert way, illegally for decades, when in actuality the state of Massachusssetts, the state disability services agency, and specifically, probate courts, have approved every course of treatment that has involved this type of aversive therapy, as humane and appropriate.

That is not my opinion, it is the opinion of the legal system in Massachussetts. The reason the JRC has gotten itself in trouble, is that their employees have abused the treatment plans, overstepping their boundries, and the director of the facility contributed to concealing evidence from an investigation into it.

The state had determined the benefits of the therapies had outweighed the costs for decades, but, the costs of the abuse now outweighs those state determined benefits, per the recent action the governor of the state took to ban the therapy on new admissions. The state and it's court still have determined that the benefits outweigh the costs for existing patients, at this point in time.

Again, that's not my defense of the therapy, I don't know enough about it to offer up an opinion on it, when it is used properly, as the state of Massachussetts has defended it for decades.

Experts in the areas of law, human rights, and mental health, outside of the JRC made that decision. The JRC isn't getting to do this, on their own accord, the state and the courts are still approving the treatment that is ongoig.

If the facility closes down, someone needs to fight for the existing patients ability to receive care, at an alternative care facility as well.

I haven't seen anyone in the media express any concern about this reality for the children and young adults, other than their parents, and ironically the facility that has been found guilty of abuses, in regard to the controversial therapy.

I am in favor of research to find better solutions, than the aversive behavioral therapy that has been used at the JRC, to treat children with autism that display self injurous behaviors like biting body parts off and gouging eyes.

I consider the research into finding these better solutions vital, and I consider it inhumane not to pursue research for better answers for children with these type of problems. There is the potential for better answers, but if there is no research there is no potential for better solutions.

This is what is a little disturbing to me about the "anti-cure" aspect of the neurodiversity movement, either it is not aware of the plight of children like this, or it ignores it. I am aware of it, and cannot ignore it, nor the vital research that is supported, and continues in hopes of helping children like this.

I don't see how this statement can be read any other way, and claiming that you aren't supportive when clearly your implications mean exactly the opposite is unusual. Whilst it may be fine for you to speculate wildly about regressive autism and fail to consider the differences between the core of what autism is and those self-harming cases, the fact is that when you mentioned the JRC, this statement implied unconditional support for a treatment system that has killed several people:


Are you going to tackle this point or avoid it by making wild speculation about the 'dangers' of neurodiversity, a belief that sounds dangerously authoritarian? I hope for an answer soon and hope you will alleviate my fears of what seems to be a very silent attack on ASAN and such groups as based on what seems to be absurd attempts to appeal to the fringe, something that is clearly reminiscent of Autism Speaks scaremongering on the I am autism video.

A general question, if your attempt to try and exploit this fringe is actual, are you closely involved or supportive of autism speaks to any degree? Because that would show if Autism Speaks has actually changed since it has made those videos. So far I have seen nothing but words and numbers, all disturbing. But let's get to the core of the matter. Aghogday, are you really trying to portray regressive autism as somehow requiring treatment that could threaten one's life?

Last edited by ProfumoAffair on 23 Feb 2012, 6:08 pm, edited 2 times in total.

There is evidence that the state approved and court approved course of skin-shock behavioral therapy has been abused at the JRC. That is what has led to the current restrictions on new admissions. Aversive therapy has been controversial from the start, decades ago, however it was approved as a humane therapy, by the state of Massachussetts, human rights specialists, legal experts, and the courts in consideration of the cost-benefit of the therapy.

As stated several times, I'm just reporting the facts, I'm not condoning the therapy, nor do I find it as a good option, however apparently the state of Massachussetts, and courts there, determined it was the only option available, for decades.

Better answers may be found through research into solutions that can help these children, or those with simliar problems in the future.

I am reporting the facts as they have exist, that are sourced through the state of Massachussetts; if you can refute anything I have stated, with facts, please do so.

I have already stated several times I do not find aversive therapy as a good option, and hope that a better option will be found in the future. But while you may consider the element of the behaviors of these children as a fringe element, they are never the less human and deserve as much respect and attention to their future welfare as any other autistic or non-autistic human being.

Closing down the JRC, and offering these children no alternatives is not a good answer either. Hopefully they will find alternatives, that are good for them, however I haven't seen anyone express this problem or concern, outside of the parents, and the facility found guilty of treatment abuses.

I support research into solutions that will help any autistic person that seeks or can use solutions that will lead them to fulfill their potentials in life. I have absolutley no affiliation with Autism Speaks, but can objectively see the important role the organization provides, in supporting this vital research.

If you read the thread, you will see that I mentioned ASAN, as supporting effective efforts for disability rights. And I've tried to explain why the anti-cure effort of the Neurodiversity movement is hurting the cause, in the eyes of the general public, more than helping it. That's my opinion; I don't expect you to agree with it.

I do not challenge any of those facts you have made, I only challenge the positive implications you have made about JRC in talking about it. I don't see why you need to keep trying t pin me down with implications that I am somehow trying to challenge facts.

At the same time I don't see why you keep avoiding the fact that you have been dispassionate about the legality of the torture occuring at the JRC whilst seemingly rushing to talk about wanting research to occur at any cost. You only added the qualifier of 'other methods', not caring about the multiple deaths of disabled children at the JRC it seems at all, and only caring to try and make jabs at neurodiversity groups on the thinnest of claims and attempts at appealing to the margin of how bad autism can be.

Your attempt to try and talk about neurodiversity groups as anti-cure doesn't stick since I have barely seen what their exact views are. At the same time your attempt to misrepresent what autism is for most people in order to make any resistance to cure seem unacceptable is deeply suspicious.

I'm autistic, I have the ability to solve solutions without getting too emotionally involved in them. And, I don't accept opinions on subjects until I attempt to see all objective facts related to a situation. I am not a legal expert, or directly involved in this situation in Massachusssetts, I can only report the facts as they exist, and reported by those whom are legal experts in the state of Massachussetts.

I haven't seen any evidence or heard of anyone killing someone at the JRC through this type of therapy, if you have evidence of that please present it.

I've already reported the fact that there is no commonly understood definition of the neurodiversity movement, other than what Wiki provides, however it is my strong opinion that any references to anti-cure, for those with the variety of neurodiverse conditions, that have been identified by different parts of the movement, does not help the movement in achieving any of it's worthy goals.

The group of children in question at the JRC is below 80 and only a portion of that 80 is autistic. These individuals have some of the most dangerous self injurous behaviors that have been identified in the country. That is not representative of all autistic children, nor is the condition of regressive autism; however it objectively warrants continued "cure" research no matter how many other people with autism don't have regressive autism, or display horrifying self-injurous behavior.

This is typical of the sort of excuses people make for terrible behaviour, by downplaying it.

I don't care how many are autistic because I am not so selfish as to only care about autistic people. The fact is that six have died. Six children. Are you really in favour of what is essentially multiple manslaughter against children simply because they are self-injurous?

You have spoken multiple times about other treatments, but there is no other way to read this given that you are still defending a centre that has barbecued several children to death, to put it frankly.

Are you really still trying to also make excuses for cure by using scare tactics such as 'self-injurous behaviour' for some autistics? Do you not consider it selfish to misportray autism in such a fashion by wildly exaggerating the most extremely disabled who are autistic? Is there a personal dimension to your warping of the diagnosis?

Is it also not pseudoscientific to claim that this huge swathe of different things can somehow be called autism? I hope you do not simply recite some chart of bogus resources claiming these self-injurous children are self-injurous because they are autistic, because that would mean the Autism diagnosis is nothing more than waffle.

closing down the JRC would not displace anyone.massachusetts has one of the largest recources of mental hygiene.there are many programs that could take the students.like i have said many times i grew up in mass and im familiar with the system