August 13, 2010

Lives Lost to Autism

This week I started another blog. Lives Lost to Autism. It has stirred up some discussion, so I thought I would address it here.

Five years ago I got into a discussion with some in the autism community on the neurodiversity side of things on whether or not it was wrong to try to 'cure' children with autism if it changed their personality. I argued that a) if getting poisons/bacteria/viruses out and getting nutrients/oxygen in, making the individual more healthy, changes some personality traits, then those traits were not a part of the real personality anyway, b) that improving health CANNOT make them into someone that they are not and c) even if it did fundamentally change someone's personality, it was worth it in the end because autism is a threat to the individual who has it, and even to some of the people that surround them.

To illustrate my point, I planned to spend two months posting the stories where someone with autism was put in danger or killed as a result of their autism, stories that I had avoided like the plague because they truly crippled me with misery (my boy is a runner). I didn't last two months, but there were enough stories to illustrate my point in a few weeks, with members of the ND community even calling many to my attention things that I had not seen, so I cut it short int order to avoid the pain of the stories themselves.

The series can be found here: Autism is Dangerous

The discussion was primarily between myself Wade Rankin and Kevin Leitch. You can read everyone's input there. Kevin didn't think it was a problem with me writing about it at the time, didn't have a problem with Kathleen Seidel keeping track of autism victims, has not had a problem with all the ND bloggers that discuss the tragic ends that those with autism meet, but he does not like it that I am doing it now.  Which is also odd because, as Wade points out, Kevin came down on both of us for not immediately picking up the Katie McCaron story. (I guess I am damned if I do and damned if I don't.) I have read his criticism and think that his fundamental point, that autism is not a killer, is just flat out wrong... as demonstrated by the fact that... well the fact that the blog illustrates in the first place. That autism directly kills a lot of people.

Last weekend 12 year old Frank Marasco was pulled from his burning home. He promptly ran back inside, back up to the second floor and died. If he did not have autism, he would have had the good sense to stay out of the house. So yes... autism killed him.

Autism kills the children who wander away from safety and drown. Autism killed our Ashley Brock.

Autism killed Bryan Nevins. He died simply because he could not open a car door and get out of a hot car.

When I wrote the initial series, Chandler was then three.  He is now eight.  After Ashley's death, it hit so close to home I knew I could not ignore these stories any more and I have learned to stomach these stories a little better (though not much as Web kept popping his head in my office this week and asking, "mommy, why are you crying"). Mostly because the stories are increasing in number and brutality, and they are not effecting autism policy other than a few local police departments (God bless them) that are putting in tracking systems.

The horrible fact is that autism makes the world a very dangerous place for people like my son. Threats from with in and from with out. I was handed another tearful reminder of this last year as my father, being the responsible grandfather that he was, decided to take out life insurance policies for my boys. He called to tell me that he had taken a policy out for Webster, but that he could not get a policy issued for Chandler until he was ten years old. Because he had autism.

Because insurance companies, whose bottom line depends on making good bets, have these things called actuarial tables, which tell them who is likely to live and who is more likely to die. And our kids, until they are ten years old, are not a good bet for the insurance company.

But this does not enter into autism policy at all. I have not read anywhere, from any official source, that our children are at high risk for premature death. It is time for that to change.

Three things inspired me to finally do it. The first was reading that five children had died of pertussis this year, thus triggering 'epidemic' status. Autism killed five children in April alone (autism awareness month) but the health authorities continue to yawn when our kids die. Are their lives not worth as much as those who die from viral illness?

The second was someone commenting on facebook that this has been the 'summer of death'. The emotional crush of these stories that keep coming and coming has been heavy in the past few months. So I finally decided if I am going to feel like crap from all this death, I might as well try to put it to good use.

The third was a conversation with another autism mom about her super fun experience. She got a call from her son's school that her son was missing. They were on the playground, there was a cloudburst, and everyone, including the aid that was supposed to be watching her son, ran inside. It took several minutes in the class room before they realized that he was missing. The boy was found, hiding in the woods sobbing, and the special ed director acted like this was no big deal.

Now parents can send this link to irresponsible educators, oblivious health professionals, clueless policy makers, insensitive family members and anyone who does not quite get just what kind of risk our kids are in when they have autism.

The government does not even track, in any way, how many children die (or kill others) as a result of having autism and becoming victims of their associated medical conditions, the drugs that are being used to treat them, their own lack of a sense of danger, threats from other people who can do them harm, or combinations of these factors.

And as I began collecting stories this week, I began realizing that there are so many more stories than any of us though were out there. It will build slowly and we will work backward, but send stories that you come across and we will get them all up eventually.

In deciding which stories to include, we basically ask the question, "if this person didn't have autism and its accompanying medical conditions, would the incident that took their life have occurred".

Other parents have come forward to help me keep this archive, which is good because doing this is miserable and there is no way I could keep it up on my own. At some point I just stopped reading the stories and was cutting and pasting like a zombie. Thanks to those who have stepped forward.

Bottom line, it is long past time for the autism community to face this.  If we can't, then there is no way the policy makers will.

And to those who don't like the blog, or see autism as a blessing... I understand where you are coming from, but I am sorry... I am just not with you on it.

People with autism a precious. But autism sucks.


Causes of Death in Autism
Robert M. Shavelle, David J. Strauss and Jane Pickett

Journal of Autism and Developmental Disorders
Volume 31, Number 6, 569-576, DOI: 10.1023/A:1013247011483

The objective of this study was to determine which causes of death are more frequent in persons with autism, and by how much, compared with the general population. Subjects were 13,111 ambulatory Californians with autism, followed between 1983 and 1997. The units of study were person-years, each linked to the subject''s age, sex, and cause of death (if any) for the specific year. Observed numbers of cause-specific deaths were compared with numbers expected according to general population mortality rates. Standardized mortality rates (SMRs) were computed for each mental retardation level. Elevated death rates were observed for several causes, including seizures and accidents such as suffocation and drowning; elevated mortality due to respiratory disease was observed among persons with severe mental retardation. Overall, excess mortality was especially marked for persons with severe mental retardation, but life expectancy is reduced even for persons who are fully ambulatory and who have only mild mental retardation.

Autism. 2008 Jul;12(4):403-14.
Mortality and causes of death in autism spectrum disorders: an update.

Mouridsen SE, Br√łnnum-Hansen H, Rich B, Isager T.

Department of Child and Adolescent Psychiatry, Bispebjerg University Hospital, Copenhagen, Denmark.

This study compared mortality among Danish citizens with autism spectrum disorders (ASDs) with that of the general population. A clinical cohort of 341 Danish individuals with variants of ASD, previously followed over the period 1960-93, now on average 43 years of age, were updated with respect to mortality and causes of death. Standardized mortality ratios (SMRs) were calculated for various times after diagnosis. In all, 26 persons with ASD had died, whereas the expected number of deaths was 13.5. Thus the mortality risk among those with ASD was nearly twice that of the general population. The SMR was particularly high in females. The excess mortality risk has remained unchanged since our first study in 1993. Eight of the 26 deaths were associated with epilepsy and four died from epilepsy. Future staff education should focus on better managing of the complex relationships between ASD and physical illness to prevent avoidable deaths.

PMID: 18579647 [PubMed - indexed for MEDLINE]


nhokkanen said...

It's frustrating that newspaper reports are whisked away by some as "anecdotes." Good idea to add the epidemiology, for people who need their reality processed by strangers in white lab coats.

Sherri said...

Sadly, here in Wichita, KS we had our 2nd death by Autism. Both children were "flight risks" and escaped from their caregivers care and drown. This last one was very recent and hit very close to home as my son with severe autism is also 5 years old(same age as the boy who died).

My husband and I have a fear, that if our home were to ever catch on fire, that my son would NOT have a clue what he should do. He currently is only 5 yrs old, and his bedroom is in our basement. So to calm our worries, I sleep in the basement on the couch and my husband sleeps upstairs with our daughter who is neurotypical but only 2 yrs old.

Autism isn't a disease that needs to be cured in my opinion. HOWEVER, I do want my son to be safe at all times. Sometimes, "autism" doesn't allow that. They urge to play in a normal child thing, but being able to have that self control to know about "danger" is very hard to teach a child with autism.

supermom_in_ny said...

I'm with you.

I'm a mom to 7 kids, 2 non bios-5 bios- the youngest is autistic. Life is not easy and the older he gets, the harder it gets. Can't work outside the home because the only after school/day care that will take him is over an hour a way (that's only one way). I have to work from home blogging, providing link building services and other SEO/Social Media Services to get along. It's emotionally and physically draining. In the back of my mind, I'm always worried about his future. (This is probably why I suffer from migraines 3-4 times a week.) He'll be 9 in September.

I love my son dearly, but I hate autism.

Autism SUCKS.

Trish said...

Ginger, Would you consider making an email subscription option available on Lives Lost to Autism? A local reader asked me about it after I mentioned the site; she is not a blogger and doesn't use a feed reader at all.

Thank you for your efforts in collecting these stories in one place.