Young Man Denied Heart Transplant Because He's Autistic

Post Reply New Topic

The way I read the "violence" was much more the the "his meltdowns involve throwing things instead of screaming" than anything else. I saw nothing that implied that this would suggest he'd need to be restrained for a majority of the time - I just saw that he had meltdowns and that people don't understand what meltdowns are.

This seems to be the prime emotional reaction on the part of the doctor, that Paul isn't "smart" (at least not in a way she's familiar with). Not realizing that Paul has a family backing him up, and he has other strengths going for him such that he doesn't drink or smoke.

And taking it a step deeper, the doctor did not find Paul a satisfying person to interview and read way too much into this. In a similar way, the DSM-4 for Autism has a big middle paragraph where they are essentially saying, 'This person is not a satisfying person to interview.' (For this and other reasons, I am not all that impressed with either DSM-4 or -5.)

The clear better alternative is, 'Okay, that wasn't the greatest interview. That's one data point. Now, what other information do we have.'

such as possibly the following

There seems to be concern whether he has the cognitive abilities to cope with the transplant itself and manage self- care. As a consequence, alternative avenues involving steroids and other medication were NOT pursued.

The heart transplant can be done with alternatives to steriod use and 24 hour managed care.

I have faith that someone in the medical community will step forward and look at this young man's case and put him on a donor's list.

TheSunAlsoRises

The only thing that surprises me anymore is that some of us are still surprised by this sort of thing.

We are not fully human in their eyes. Maybe we're actually not fully human. I'm not so sure I want to be human - horrible creatures.

It could probably be found via a Google search or OhioLink search. The study only included African-Americans as a minority, but I'd like to know how Arabs, Hispanics, and Asians fare in transplant statistics in the United States. A global analysis would also be quite interesting. I'll be looking to see if one has been done.

I think this is an excellent point which we can build on. That the family considering donating the heart of a loved one who has just passed away more likely prefers a process that is, shall we say, an open-hearted process which is accepting of persons, and not some process where we harshly judge people.

And I think this is how Paul and his family will win, the combination of publicity and giving a new institution a fresh start.

And hopefully it will be in time and hopefully it will work. And then Paul can write another book or whatever other activities he wishes to engage in.

"We are not fully human in their eyes. Maybe we're actually not fully human. I'm not so sure I want to be human - horrible creatures"

AMEN!! !

I have thought that many times myself being on the spectrum, being married to an Aspie, and our precious miracle daughter with autism.

This saddens and scares me for my child and other children's future on the spectrum. ASD is linked to so many other diseases that have hardly been tapped into or acknowledged whatsover by traditional medicine.... with the rise in autism and the other diseases that are linked to them.... can't even think what the world will be like in another 40 years. I have a feeling donor recipients on the spectrum and the so called "criteria" will be shifting radically in the medical world as the education world shifted to allow inclusion instead of institutionalizing our children from 40 years ago. Lets hope so. Laws need to be put in place to protect people with ASD.

I'm not going to say what priority he should be on the transplant list without seeing all the relevant information, but I will say he should be on it. Hearts for transplant are rare things.

Out of interest, how many people die each year whose hearts could be used for transplants, compared to the number of people who need heart transplants every year? The heart of someone who's died from obesity related problems is unlikely to be suitable, as is one from someone who's died due to age... as medical technology improves, the heart supply is going to decrease anyway, so we're either going to have to get used to having to decide who to let die, or find a way to increase the supply of hearts. The latter we could do by either increasing capital punishment and stripping the bodies, or better than that, improving our xenotransplantation abilities...

This story has been picked up by the Philadelphia Inquirer and ABC News. Read the story on philly.com here:
http://articles.philly.com/2012-08-14/n ... transplant
Read the story on abcnews.go.com here:
http://abcnews.go.com/Health/autistic-m ... Cw196DvyWV

Does anyone remember Barney Clark and his artificial heart? (which I think worked for a number of days and then the guy didn't make it)

http://abcnews.go.com/Health/autistic-m ... d=17006152

Thanks for letting us know about the abc article, but looking at it, I don't think it's not very good. It mainly just seems to trot some of the usual stereotypes. I guess it could be worse, but it could also be a heck of a lot better.

Last edited by AardvarkGoodSwimmer on 16 Aug 2012, 2:28 pm, edited 1 time in total.

I don't think any person even if they are autistic should be denied a heart transplant as, that sounds totally absurd.
I'm not sure what are the exact criteria for such but, even if someone is autistic that should not rule himself/herself out of such a decision..

This is absolutely disgusting. Those doctors should be arrested and charged with a discriminatory hate crime. Sometimes I think Neurotypicals are just scumbags.

I think Paul and his family will eventually win and he'll get on the transplant list. And I think this is how it will happen:

Getting overall publicity, and then going to a new institution who isn't entrenched with having to justify a previous decision.