Safety v. Personality Change

A few weeks ago in the comments section of my blog, the question was raised, is it worth treating autism if it changes the personality of the autistic child. I argued that it was because both children and adults with an autistic spectrum disorder are at greater risk of physical harm than the general population, and mitigating their autistic symptoms helps to keep them safe.

You can read the posts on this here, here, here and here.

I realize that the ‘cure/not to cure’ debate a much wider one, and there are lots more discussions that can and should be undertaken, but for me, in making a decision as a parent and justifying that decision to Chandler when he is an adult, it all boils down giving him the best chance of living safely in this world.

I was planning on blogging for a month or two on news stories on ASD individuals who had been harmed or been at risk for harm because of their autism to prove my point, but more proof than I wanted to see has presented itself, so I am just going to wrap up this up now. Mostly because I hate dwelling on these stories.

Last week a young man with Aspersers who was reportedly really lonely and just wanted a friend his own age, despite his parents actively trying to help him, became so despondent and disturbed that he killed two of his neighbors and committed suicide.

This week authorities learned that several autistic individuals living in a group home who had died recently were the victims of foul play.

This week a mother in England admitted to murdering her autistic son, whom by all accounts she had cared for very lovingly for 36 years, and then attempting suicide, because she could no longer take the stress.

Tuesday, police rescued a 22 year old autistic man from the roof of a group home when he refused to come down.

In the comments section of this post Ann shared these stories of autistics that have been crime victims with us:

HeraldToday.com, October 21, 2005

Juvenile Justice guards allegedly assigned a teen sex offender to bathe and change a severely mentally retarded boy, who police say was then raped by the offender. ...

Advocates for the developmentally disabled are also outraged by the case for two reasons: The boy was locked up in juvenile detention instead of receiving help from the state Agency for Persons with Disabilities and Juvenile Justice officers allowed a sex offender to be alone with him. ...

The family wanted the boy placed in a group home, but was told there was no room, Russ said.

"He's a good kid, he's not no bad kid. He's an autistic child and those kinds of children can get easily upset sometimes," Russ said. "He ain't no criminal and he ain't done no crime."


The Centre Daily, October 14, 2005

Harrisburg, PA - A state appeals court reinstated a third-degree murder charge against the stepmother of an autistic teen who weighed 94 pounds and was covered in sores when he died of starvation and dehydration in December 2001.


The Kalamazoo Gazette, October 10, 2005

The $25 million wrongful-death suit filed by the family of a 15-year-old Parchment High School student with autism who died there on the first day of school in August 2003 has once again moved into mediation....

The suit states that on the day Michael died, he fainted at about 12:30 p.m. and became combative after regaining consciousness. Four school and KRESA employees restrained him by grabbing his limbs and holding him on the ground.

The employees, according to the suit, ignored his need for medical attention. An emergency call was made just before 2 p.m., but Michael could not be revived and was pronounced dead at Bronson Methodist Hospital.


The Cincinnati Enquirer, October 9, 2005

Jan Naylor of Springdale went under in the deep end on Sept. 29, and shot her 27-year-old autistic daughter, Sarah, to death, then set her house on fire and shot herself.


Gainesville.com, October 6, 2005

A Lake City caregiver turned herself in to Gainesville Police Tuesday and was arrested on charges of child neglect of an 11-year-old boy who has autism and cerebral palsy.

The boy was scalded with hot water while in a bath tub.


Sun-News of the Northland, October 6, 2005

One grant benefiting Clay and Platte families is the Children's TLC Easter Seals "Empowerment Project for Families with Special Needs Children." The $35,000 grant will help provide parent support for those raising children with autism or a severe behavioral disorder.

According to Children's Trust Fund, children with autism are seven times more likely to be abused than a non-disabled child.


The Guardian, September 24, 2005

Wendolyn Markcrow, 67, of Long Crendon, Buckinghamshire, pleaded guilty to manslaughter by reason of diminished responsibility after the death in March of her third son, Patrick, 36, who was autistic and also had behavioural difficulties.


Check out Amanda Baggs' account of being institutionalized, and what it feels like to hear people say she doesn't know how hard it is to be autistic:
Past, Present and Future


Also Joel Smith's page dedicated to people who were killed for being autistic:
Murder of Autistics


Kathleen Seidel has some pages on very bad stuff that has happened to autistics:
http://neurodiversity.com/murder.html
http://neurodiversity.com/abuse.html
http://neurodiversity.com/aversives.html

Ann and I have come to the same place from different directions, my emphasis is on making autistics safe in this dangerous world, and her emphasis is on making this dangerous world safe for autistics. Ann's point adds balance to my initial question.

It is one that I have glossed over a bit because primarily I believed that it went with out saying. The culture needs to be more accepting, and in truth, embracing, of those with autism and other disabilities. Period. I can’t imagine anyone who would need me to argue why would be reading this blog anyway so I am not going to bother.

I am sure another reason that I have not written much on the world’s intolerance of and victimization of autistic individuals is because it is something that I may begin to have to face firsthand in the next few years, and I am just not ready to face that yet.

Chandler is only three and a half, and we are fortunate enough to have him surrounded by very trustworthy people. As he gets older and his circle gets wider, more and more possibilities for danger creep in. This is why I want him to have the best chance possible to be able to recognize danger and avoid it.

For our family, today, the biggest danger to Chandler is Chandler.

I did want to highlight Ann’s point here, because she makes an important one. Society at large should embrace those with autism and strive to understand their differences.

I believe that is only half the equation though. There will always be really horrible, anti-social people in this world, who don’t care about what they ‘should’ do, and no amount of societal pressure to be kind to those who are vulnerable will change them. Even if we could wave a wand and make everyone love autistics, that still does not remove the danger that they pose to themselves.

This is a dangerous world and having autism makes it more dangerous, as demonstrated by this series of posts. The primary responsibility of a parent is to protect their children from danger, both now, and when their parents are no longer around to protect them.

If “curing” my son’s autism changes his personality, I believe it is worth it, if only because it will make him safer in life. Safer both from harming himself and from becoming a victim of someone else.

If anyone sees flaws in my reasoning, or a point that I may not have thought of, I am certainly open to hearing about it, but unless and until someone can make a good argument as to where I am wrong on this, I am gonna go ahead and close the books on this question.

My reasoning is that treating autism in an attempt to ‘cure’ is better than leaving the autistic individual at the mercy of their lack of a sense of danger and at the mercy of the cruel people in this world.

Missing Man Found After Being Hit by a Van

Antwan Hester was found two days after he walked away from his family. They found him because he was in the street and a van hit him. Thank God, he is ok.

As a reminder, I initially posted his story to point out how autism is dangerous. I don't mean to offend anyone who looks at autism as an 'alternative cognition' and feels it should not be cured if it can be, but I feel a little silly demonstrating how autism puts people at risk. It seems self-evident.

I will continue to post these stories as they arise. At least until it gets too upsetting for me.

Missing man found in southern Raleigh
From Staff Reports

RALEIGH -- A missing man was located late Monday night after he was struck by a van on Tryon Road.

Antwan Hester of Henderson, who has autism, received minor injuries and is back at home in Henderson, said Phyllis Stephens, spokeswoman for the Wake County Sheriff's Office.

Hester had wandered off from his family Saturday night at the State Fair. Around 11 p.m. Monday, Hester was walking on Tryon Road when he was struck by a 1997 Dodge van driven by Joan Curtis Smith, 50, of Raleigh, said Jim Sughrue, spokesman for the Raleigh Police Department.

Authorities do not know where Hester spent the two days he was missing. Smith was not cited in the accident, Sughrue said.

Autistic Man Missing Since Saturday

A reminder of the questions being explored. Did this man's autism contribute to his current 'at risk' status? Would he be in danger if his autism had been 'cured'?

Authorities search for missing man
Antwan Hester

Raleigh — A 22-year-old autistic man wandered away from his family Saturday night at the N.C. State Fair and hasn't been seen since.

Antwan Hester, of Henderson, was last seen walking towards Hillsborough Street from Blue Ridge Road, according to the Wake County Sheriff’s Office.

Hester is 5-feet-8-inches tall and weighs 220 pounds. He has brown eyes, black hair. He also has a thin beard and a moustache. He was last seen wearing a gray hooded sweatshirt with a blue striped T-shirt underneath. He also had on blue sweat pants and tan Timberland boots.

Hester is autistic and has childlike tendencies, according to the sheriff's office.

Anyone with information can contact Investigator S. Ikerd with the Wake County Sheriff’s Office at 856-6967.

Does Autism Treatment Change Personality?

This began as a reply to Wade Rankin and Kevin Leitch’s post in the comment section of this post, but it has mutated into its own post. Kevin raises a good question that is beginning to get some discussion in the biomed community. I thought I would offer my opinions and experience and then throw it out there for discussion.

“Its an absolute nightmare scenario I agree but I don't really see how (or why) you're tying it into the desire to not 'cure'?”

The primary responsibilities of parenthood is to keep a child safe, and to teach them how to keep themselves safe when you are not longer there to care for them. I see Autism as a making the first much more difficult and a monumental obstacle to the achieving the second.

I am not so much attacking the “desire not to cure”, as using this example to defend the ‘desire to cure’.

“Kids wander away from their parents all the time, both autistic and not autistic - they do it because they're curious beings. Removing autism won't remove curiosity.”

No… but it will temper curiosity with a healthy fear of injury, so what happened to the cat may not happen to the child.

I will continue posting the stories of missing and deceased autistic children and then everyone reading can decide for themselves if the child's ASD was the factor that made them engage in the behavior that put them at risk or resulted in their death.

In this case, I have a 5 year old typical little boy and the thought of stepping out of the house in the dead of night would scare him shittless. He certainly would not get up, go out the front door and then walk for blocks.

If my typical 5 year old was separated from me at Disney, he would scream for me and look for me and it would be much easier for him to be found. Chandler (pre-biomed) would just keep walking endlessly.

FYI, Disney is a lot safer place than I thought it was. A few years back (before we had kids) we were there with another couple and were standing by that huge marble ball that is sitting on top of a high pressure water fountain so kids can spin it... you know the one? Anyhoo, this one 12 year old thought it would be funny to pee on it. Well we found out just how many plain clothes security they have in the park, because instantly the kid was surrounded and uniformed guards came around the corner about 30 seconds later.

My point being that if a child gets separated from mom at Disney World and starts screaming for mommy, there will be several security people in ear shot to scoop him up immediately. How much longer did it take the Mouse Squad to recognize the happy little Rankin was at risk when he didn't call attention to himself by recognizing that he was at risk and freaking out?

And again, I think we have different ideas of what "cure" means. To me it is that he would not longer fit the DSM IV criteria. Most specifically, and most importantly, he would be able to accurately size up his environment, act appropriately in his own best interests and advocate for himself.

Last spring we were at the park and poor Chandler was stung by a bee on his face. We were sitting on one of those kid trains, and he started whimpering for a minute but was not terribly upset. Scott assumed that he didn't like the ride. He was stung on the cheek facing away from Scott, so he could not see the big red welt.

It was not until 10 minutes later when I approached them as we were getting off the train (Web and I were in another part of the train car) that I put together what had happened. I had seen the bee earlier, Scott had not.

Now the danger part is that kids react to bee stings on their 2nd sting. What if he had developed an allergy and gets stung again, but does not call it to my attention? All the sudden my child falls into anaphylactic shock and I have no idea what the hell is happening.

Autism makes the dangers of childhood MUCH more dangerous. Come to think of it, it makes the dangers of adolescence and adulthood more dangerous as well.

“The other point of course is that the advantage of not being cured probably wouldn't occur to someone until they were in teen/adulthood and able to appreciate concepts such as determinism, self-awareness, choice etc. You wouldn't want to 'cure' someone’s gender in their childhood as that would be a choice for them as adults.”

And as far as drastically altering their personality, comparing it to as dramatic a change as someone’s gender, I don't know that "curing" them would do that. Do you know of cases where that has happened? To me it just seems to be more 'amplifying' their personality. Who they are is who they are.

The changes we have seen in Chandler have not made him different so much as they have made him 'more'. We are finding that he has talents we didn't know he had because now he uses them and even shares them with us.

Chandler's first language is math. At 2 he could not say mommy or daddy, but he could count to 10 forwards and backwards. Numbers are still his first love, but now he includes us in it, asks us to count with him, we play little number games and best of all, we can teach simple addition to him and his experience with numbers is now enhanced because he can receive what we have to teach him.

Now rather than just sitting alone and reciting numbers (he clearly has a special relationship with each digit) he is using math practically. As I was typing this he came over and began counting imaginary ice cream cones. "One Ice Cream!" he takes a lick, and offers mommy a lick, "Two Ice Cream!" and on and on. At one point the ice cream was blue.

He is still Chandler, just happier and no longer in a fog. He can communicate his wants and needs, and cope better when he doesn't get his way. He is recognizing opportunities that he never noticed before. But he is still the same kid.

I think my husband is a good example of someone who has lost ASD symptoms (not the good ones) through biomed, but retained his skills and "specialness". Whereas in his youth, his waters were so still that no one knew how deep they ran, now he is a big stand out because people know how freakin' smart and talented he is. I should write about his story.

Since the personality change question has been raised on the Evidence of Harm list by Adult Autistic that oppose a 'cure', parents have been asking one another if they know of any children loosing their special talents or personality traits as they recover. I have not heard people report that they have, but I don't read all the posts.

I think it is a great question to put out here. Do you know a child who is recovering through biomed or ABA or whatever? Have you seen him loose any special personality traits or talents?

To be completely honest, I am not open to the idea that a ‘cure’ for Autism should not be perused. Certainly it should be up to each autistic individual, or autistic child’s parents as to what treatments they want to implement.

To me this is a completely subjective discussion because bottom line, my child suffers physical illness, metal toxicity, metabolic disorder and autoimmune disorder, and I am going to treat them. Regardless of the impact on his autistic symptoms, it would be irresponsible of me to leave him be now that I know that these problems exist. In addition, if I actually had to choose between Chandler’s recognition of danger and his mathematical acumen, then bye-bye advanced calculus.

But just because my mind is pretty much made up as to the answer to this ethics question for my family does not mean that the question should not be explored. I believe in looking at things, even that we disagree with entirely, because at worst it tempers our judgment of those who disagree with us and at best it gives us wisdom on the journey that we have chosen.

This specific question is just another one in the larger medical ethics discussions, ‘just because we can cure something, does it mean that we should’? That is a discussion that I am very open to.

Ironically, both my side of the aisle and Kevin’s side contradict themselves in this ethical question. Allow me to over generalize and use the most extreme stance for illustrative purposes:

My camp says: Don’t ‘cure’ infectious diseases through vaccinating because the side effects (neurological, toxicological and immunological) are too dangerous and not worth it.

His camp says: Don’t ‘cure’ autism through biomed treatment because the side effects (mineral depletion, personality change and child’s self-esteem) are to dangerous and not worth it.

Both sides assert their right to reject and condemn the treatment they don’t like, while attacking the other group for doing the same.

At this point, in what we know it is still a subjective decision and reasonable people can disagree on whether or not to vaccinate or chelate.

So enough of my commentary, back to the question:

I think it is a great question to put out here. Do you know a child who is recovering through biomed or ABA or whatever? Have you seen him loose any special personality traits or talents?

UPDATE: Wade had expounded on my thoughts here.

You see, the point is not trying to keep our children from being lost in a theme park or on the streets of a new city. It’s to keep our children from being lost in the world!

Read the whole thing.

UPDATE: BLOGSWARM!
Ok... I don't know if three is a blog swarm, but I am gonna go ahead and call it that. Kyra at This Mom has her thoughts on the matter. Here is a sample:

I hear of this heated debate, the biomedical approach versus those who petition for greater acceptance of these children, greater awarenes of autism, greater education. And I think, what am I missing? I do accept my son as he is. I embrace him and love him and will continue to work to allow for him to grow into his potential...

...Put 100 ASD kids in the room, you’ve got 100 highly different kids. Remediate the autism, and you’ve still got 100 different kids. But maybe they can now deal with the sensory input of the scene, maybe they will feel safe, and will express themselves with the confidence and competence that is their birthright.

I love this thought:

Now that we know where the deficits lie, let’s treat them and turn down the static so we can hear what these kids are saying.

I, for one, am interested. I’m not trying to fix them. I’m trying to hear them.

Go read it.

How Autism Threatens Childrens' Lives

Several times a month there are stories in the news about autistic children who have walked away from home. Some of the time the children are found safely, many times they are not. Up until now I have not been posting these stories, as they are difficult for parents of autistic children to read. ...as they are difficult for me to read. I now think that I should have been.

I think people need to understand how vulnerable most of these kids are because they lack a healthy fear of their environment.

I do this to make a point to those who say that trying to find a 'cure' for autism is either morally wrong or physically dangerous.

Lost child found by Rockland police
by Max Bowen
Friday, October 21, 2005

An autistic child found at midnight on Monday in Rockland was later reunited with his mother, according to Rockland Deputy Police Chief John Llewellyn.

On Monday, Oct. 17 at 11:45 p.m., police received a call from the fire department reporting a small boy walking near the intersection of Westwater and Grove streets. A detail officer found the child a short time later.

"He wasn't wearing any shoes or socks," said Llewellyn. "The child was non-responsive."

Police were able to coax the boy into a police cruiser using potato chips. Officer Thomas MacDonald drove the boy, who police described as being 6 or 7 years old, around the area where he was found in the hopes he would indicate where he lived. The child gave no response, however, and the officer took him back to the station.

Police contacted the fire department, who took the child by ambulance to Brockton Hospital while the Department of Social Services was notified to send a caseworker. The Plymouth County Sheriff's Department performed a reverse 911 call to all the homes within a one-mile radius of the area where the boy was found.

At 12:12 a.m. the boy's mother came to the station to pick up the child. She informed officers that her child was autistic and unable to communicate. The family had recently moved to the area.