Re: Debate: Should Autistic Man Be Denied Heart Transplant?

[Guest guest]

Sigh.

Autism is not a mental illness.

I wish a distinction would be made between:

1) brain " wiring " issues that are primarily differences, but pose no danger to

the person or others;

2) brain illnesses that are damaging to the individual or others.

A psychopath or person with bipolar, if untreated, is dangerous to have in any

group of people. An autie, Down Syndrome person, or similar, is odd, perhaps

weak, but poses no threat. [unless her upbringing damages her.]

In either case, the decision to withhold a transplant is far too complicated to

deny it on the grounds that you appear in the DSM alone. Is Saddam Hussein

(possibly megalomaniac, psychopathic, or ??) more or less worthy than me (garden

variety Aspie) or a " pure " NT? Who is asking, who is deciding, and who has a

matching heart available?

--Liz

> This case has been reported widely and discussed in autism forums for the past

several days. Though not about autism and relationships, this does strike at the

very heart (excuse the pun) of the ethical questions surrounding medical

treatment of the autistic and others with disabilities. What do you think?

> - Helen

>

> Debate: Should Autistic Man Be Denied Heart Transplant?

> Should mental health affect your placement on the organ transplant list?

> By Makini Brice | August 15, 2012

> Read more at

http://www.medicaldaily.com/news/20120815/11526/paul-corby-autism-denied-heart-t\

ransplant.htm#7gygHvqrqp55oPPZ.99

>

>

>

>

> ------------------------------------

>

> " We each have our own way of living in the world, together we are

like a symphony.

> Some are the melody, some are the rhythm, some are the harmony

> It all blends together, we are like a symphony, and each part is crucial.

> We all contribute to the song of life. "

> ...Sondra

>

> We might not always agree; but TOGETHER we will make a difference.

>

> ASPIRES is a closed, confidential, moderated list.

> Responsibility for posts to ASPIRES lies entirely with the original author.

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>

[Guest guest]

Hi Liz,

It's a tough situation since only 1 in 10 people who need a transplant will get

one, in any given year. It's not based only on danger to others. And it sounds

like he has a mood disorder/anger issues that may or may not be related to

autism.

Also, while you and I may believe and accept that autism is a brain " wiring "

difference and not a mental health condition, that is not universally accepted

in the medical field and a bipolar person (untreated) may or may not be any more

of a danger to society than an autistic person.

Just playing devil's advocate.

Re: Debate: Should Autistic Man Be Denied Heart

Transplant?

 

Sigh.

Autism is not a mental illness.

I wish a distinction would be made between:

1) brain " wiring " issues that are primarily differences, but pose no danger to

the person or others;

2) brain illnesses that are damaging to the individual or others.

A psychopath or person with bipolar, if untreated, is dangerous to have in any

group of people. An autie, Down Syndrome person, or similar, is odd, perhaps

weak, but poses no threat. [unless her upbringing damages her.]

In either case, the decision to withhold a transplant is far too complicated to

deny it on the grounds that you appear in the DSM alone. Is Saddam Hussein

(possibly megalomaniac, psychopathic, or ??) more or less worthy than me (garden

variety Aspie) or a " pure " NT? Who is asking, who is deciding, and who has a

matching heart available?

--Liz

> This case has been reported widely and discussed in autism forums for the past

several days. Though not about autism and relationships, this does strike at the

very heart (excuse the pun) of the ethical questions surrounding medical

treatment of the autistic and others with disabilities. What do you think?

> - Helen

>

> Debate: Should Autistic Man Be Denied Heart Transplant?

> Should mental health affect your placement on the organ transplant list?

> By Makini Brice | August 15, 2012

> Read more at

http://www.medicaldaily.com/news/20120815/11526/paul-corby-autism-denied-heart-t\

ransplant.htm#7gygHvqrqp55oPPZ.99

>

>

>

>

> ------------------------------------

>

> " We each have our own way of living in the world, together we are like a

symphony.

> Some are the melody, some are the rhythm, some are the harmony

> It all blends together, we are like a symphony, and each part is crucial.

> We all contribute to the song of life. "

> ...Sondra

>

> We might not always agree; but TOGETHER we will make a difference.

>

> ASPIRES is a closed, confidential, moderated list.

> Responsibility for posts to ASPIRES lies entirely with the original author.

> Do NOT post mail off-list without the author's permission.

> When in doubt, please refer to our list rules at:

> http://www.aspires-relationships.com/info_rules.htm

> ASPIRES ~ Climbing the mountain TOGETHER

> http://www.aspires-relationships.com

>

[Guest guest]

I think this idiot hospital worker, who mentioned   might be violent, is being thrown under the bus by the hospital.

I actually looked up the pdf criteria for heart transplants, and like it or not psycho social issues are a consideration. Mental illness, cognitive " problems " , and support systems in place are listed.

All hospitals have ethics boards who review cases like 's, or that 24 weeker in the NICU,  a 90 year old on a vent with kidney failure in ICU, or the stage 4 cancer patient wanting more treatment. How much resources do you throw at a patient? What is considered quality of life?  And who is paying for all that treatment, which is the real issue.

Transplants are $$$$ big business. is most likely on public assistance, and we all know how little that pays medical bills. The hospital will probably eat a good 3/4 of that bill. No upside for the hospital. He's a single adult male, who receives the littlest  amount of help from the government. isn't married with three kids, a Hawking level celebrity (who has $$$ and private insurance), or an adorable kid with a upper middle class income.

*note to so called Autism groups, when all you have on your sites is cutey kids, and no supports for adults, this is what you get. If you don't care about the adults, why should the great unwashed? All the public hears is Autistic people are group home material or unemployed basement dwellers.  Maybe a few heard of Temple Grandin. Why is anyone truly surprised you aren't valued in a country which is all about money, celebrity or what do you contribute to society?

Also surgeons do cherry pick who they will transplant. A hospital may only do 30 transplants a year. Who wants an unsuccessful transplant pulling the average down, which everyone looks at when shopping around for a transplantation?

I think what got bounce from the list was 1) not being a easy case. The psych and cognitive issues can't be brushed aside 2) his mom. Sorry, had she been some college educated, professional, who could rattle off 's 19 medications with names, doses and times, had money to pay for private duty nurses or an aides to baby sit in ICU, after transplantation, yeah, I think the surgeon might of considered .

Medicine in the US isn't fair or even a right. The poor and uneducated get screwed all the time.  If Bill Gate's had an Autistic adult child, who needed transplant, would he get on the list, short of totally being medically unstable for transplantation? I'd say yes. Being judged as " educated " , having money and connections gets you better options. Whether it's getting a better shot on the transplant list, finding the better schools that teach Autistic children, ABA therapy, hell having money to get your child diagnosed by a decent clinician.

I wonder which hospital will bite now, that 's mom went public. My doctor friends said they wouldn't touch this case with a ten foot pole. They feel, anything short of a perfect out come, this a malpractice suit in the making.

's mom got it wrong. It is the medical establishment judging HER unsuitable to handle 's transplant, not so much being a poor candidate.

Welcome to the Medico-Industrial-Complex, we'll be your best buddy, as long as you can pay.

Nan (who is Bipolar I, and gets Prednisone psychosis every time I take it. I would be in the same leaky boat as . No cash, crap insurance, little support, complicated medical issues. I think is a coin flip as finding placement on the transplant list.)

 

Hi Liz,

It's a tough situation since only 1 in 10 people who need a transplant will get one, in any given year. It's not based only on danger to others. And it sounds like he has a mood disorder/anger issues that may or may not be related to autism.

Also, while you and I may believe and accept that autism is a brain " wiring " difference and not a mental health condition, that is not universally accepted in the medical field and a bipolar person (untreated) may or may not be any more of a danger to society than an autistic person.

Just playing devil's advocate.

Re: Debate: Should Autistic Man Be Denied Heart Transplant?

 

Sigh.

Autism is not a mental illness.

I wish a distinction would be made between:

1) brain " wiring " issues that are primarily differences, but pose no danger to the person or others;

2) brain illnesses that are damaging to the individual or others.

A psychopath or person with bipolar, if untreated, is dangerous to have in any group of people. An autie, Down Syndrome person, or similar, is odd, perhaps weak, but poses no threat. [unless her upbringing damages her.]

In either case, the decision to withhold a transplant is far too complicated to deny it on the grounds that you appear in the DSM alone. Is Saddam Hussein (possibly megalomaniac, psychopathic, or ??) more or less worthy than me (garden variety Aspie) or a " pure " NT? Who is asking, who is deciding, and who has a matching heart available?

--Liz

> This case has been reported widely and discussed in autism forums for the past several days. Though not about autism and relationships, this does strike at the very heart (excuse the pun) of the ethical questions surrounding medical treatment of the autistic and others with disabilities. What do you think?

> - Helen

>

> Debate: Should Autistic Man Be Denied Heart Transplant?

> Should mental health affect your placement on the organ transplant list?

> By Makini Brice | August 15, 2012

> Read more at http://www.medicaldaily.com/news/20120815/11526/paul-corby-autism-denied-heart-transplant.htm#7gygHvqrqp55oPPZ.99

>

>

>

>

> ------------------------------------

>

> " We each have our own way of living in the world, together we are like a symphony.

> Some are the melody, some are the rhythm, some are the harmony

> It all blends together, we are like a symphony, and each part is crucial.

> We all contribute to the song of life. "

> ...Sondra

>

> We might not always agree; but TOGETHER we will make a difference.

>

> ASPIRES is a closed, confidential, moderated list.

> Responsibility for posts to ASPIRES lies entirely with the original author.

> Do NOT post mail off-list without the author's permission.

> When in doubt, please refer to our list rules at:

> http://www.aspires-relationships.com/info_rules.htm

> ASPIRES ~ Climbing the mountain TOGETHER

> http://www.aspires-relationships.com

>

[Guest guest]

Wow Nan, you sure have a way of " telling it like it is. " I always like reading

your point of view. You get *straight* to the point!

There is something particularly sobering about this story, and maybe not so much

because the central character is autistic and in need of a heart transplant, but

that the idealized notions we may have about medical care (as seen on TV) are

really a myth. Not wanting to turn this into a discussion of class wars or go

waaaay off topic here, privilege matters.

I think that the lesson for the rest of us, AS or NS is that we must take

responsibility for our own physical and mental health. For parents of spectrum

children, giving their children all the survival skills they can teach them,

including good self care, independence and social communication skills is so

important. Don't expect society to pick up the slack for you .. ain't gonna

happen.

- Helen

>

> I think this idiot hospital worker, who mentioned might be violent,

> is being thrown under the bus by the hospital.

<snipped>

[Guest guest]

It's interesting reading this as someone in the UK. One thing that struck me is

that Autism appears to be classed, in US medical circles, as a mental health

disorder (is that right?), whereas in the UK it is a registered disability and

therefore those with a diagnosis are protected under disabilities legislation

and cannot be discriminated against.

Secondly, of course the same problems exist about supply of transfer organs, but

we also have NHS care that means all taxpayers fund the care of those in need,

whatever their social status. There is a private care option open too of course,

and that may well open doors for the privileged. I'm not sure of the finer

details.

There has been talk here in the UK of refusing operations to those who make

lifestyle choices such as smoking or who do not seek help for obesity or

alcoholism for example, but never heard this type of argument in the UK

surrounding mental health difficulties.

It's certainly a highly contentious and emotive issue. Interesting article.

Thank you to the original poster.

Sent from my iPhone