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.