November 11, 2005

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.

8 comments:

Wade Rankin said...

Well said, Ginger. Our children cannot be safe if they cannot function independently in this world. They must be able to not only perceive danger, but to communicate their peril.

Kristina Chew said...

I think of this also in regard to making the world safe for autism. My son has very literally been a danger to himself and we know we sometimes must do what seems "extreme" to take care of him.

Lila said...

The question was, "Is it worth treating autism if it changes the personality of the autistic child?" In my estimation, that is a question asked by someone who already has their mind made up and who is not thinking rightly. Asperger's (mercury poisoning) is what has changed my son's personality and curing him would restore that. He was born perfect and had nothing wrong with him. After receiving someone else's MMR at 8 mo. and then given his DPT#3 and HIB#3 on top of it, he developed Asperger's. Don't tell me to not try and restore what was wrongfully taken from him.

Anne said...

If you guys think you are worried now, wait until you send them off to college.

Lila, my son is an Aspergers college student. There are quite a few of them. True they are not perfect, but so few college students are.

Kev said...

Dammit, I always come too late to these...

Its a very difficult point to argue. As a parent, I want all my kids to be safe and well all the time.

But my son came off his bike 3 weeks ago and just about concussed himself. Despite me repeatedly telling him to wear a helmet, he's at that age (13) when 'he knows best' and looking cool is more important than safety.

The point is that *all* kids are vulnerable. Your point (I think) is that children who are autistic continue to be vulnerable even as they grow up.

That's something of a grey area. There's nothing unique about children being abducted and killed. There's nothing new about adults going off the deep end and doing terrible things - you don't have to be autistic to either do or be on the recieving end of these acts.

Megan was at one time (and still is occassionaly but decreasingly) a danger to herself. I can't imagine anyone suggesting that ignoring this could be a good thing or desirable.

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.

Hmmm. Yes and no. Yes, the duty of a parent is to protect their child from danger and if their child continues to be incapable of making decisions in that vein then again I agree.

But you and I both know that there are lots of autistics who would disagree that the price of their autism should be a cotton-wool existence.

I believe that parents have a duty to their childrens future. Part of that is protection from harm. But another part of that is raising that child to be confident of who they are. I know you believe that chelation (amongst other things) will remove your childs autism. You know I believe it will not.

I also believe that as a parent I have a duty to not expose my children to anything that can hurt them unecessarily. Without wanting to cause unecessary arguing, its plain that something like chelation carries very strong health risks. At what point does the willingness to risk trump the desire to keep safe?

We have one chance to raise our kids to be happy and self-confident - and safe. I don't know if Rosa Parks had kids or not but if she did would she have wanted them to be happy and safe? Or just safe?

Ginger said...

Kevin, I feel like we are on the same page, just emphasizing different things.

As I mentioned, I just have just taken it for granted that those with autism are valuable and deserve to feel special and appreciated just like anyone. I think that is true of everyone, regardless of what they have to contribute, autistic, non-verbal, 10 years in a coma, EVERYONE is of value and brings beauty to this world.

Certainly protection from harm is parenting job one, but job two is smotherin' with lovin'.

Our kids absolutely have the right to be happy and fulfilled and cherished and admired for the things they bring to the table that would not even occur to the rest of us.

I think one of the reasons that I have not emphasized this is that it didn't occur to me that autistic individuals need to be 'justified'. I understand that many people with ASD who have been treated crappily because they were different, and see 'cure' as another attack on their perceived value, but I don't see it that way.

I feel like it is giving my autistic son the best chance to communicate to the world his individual wonderfulness so others can appreciate him and all he has to offer.

I have some, I think, really nice ideas about the value of people with autism that I have not written much about. I know I need to balance my blog more by doing that. I appreciate you and Ann making these points. I don't want to give people the impression that autistics feelings aren't as important as their health just because I have not written much about it.

I think that is really what this whole discussion needs is more balance. More focus on what we do agree on.

I have mentioned to you that I wanted to write a piece asking adults with autism for what advice they would offer to parents who are trying to "cure", so that they can keep it in balance. Perhaps you and I could co-blog that or you might extend that invite for me to your audience as more adult autistics read your blog.

Anne said...

I have some, I think, really nice ideas about the value of people with autism that I have not written much about.

Lay them on us, Ginger!

Clay said...

While I am not looking for a cure for Edith Rose, I wonder sometimes about all of this cure equals change of personality discussion.

It seems to me that (assuming a cure was possible) improving one's ability to speak, sensory sensitivity, how one experiences the whole world of stimulii would have nothing to do with one's personality.

Your personality is who you are at the core of your being. Your intelligence, your sense of humor, your compassion, your likes and dslikes etc.

An autistic person's lack of ability to speak, or being prone to hand flap or rock back in forth, is not "who they are".