Monday, November 24, 2014

The Stigma of 'Disorder'

I recently heard on the radio that the military with changing the name of Post Traumatic Stress Disorder to Post Traumatic Stress.    The idea is that by dropping the term "disorder' there will be less stigma associated with it and thus less resistance to getting treatment.  'This is not a disorder." One spokesperson said "It is a normal response to the trauma that men and women in combat may be exposed to."
I have no particular opposition to this.  After all, it's just a label and I'm all in favor of encouraging service members to get treatment - even if it's just preventive- and I'm certainly in favor of reducing the stigma associated with Post traumatic stress. (disorder)  At the same time, I think this is indicative of how we deal with stigma.   I wonder if we are going at this ass backwards.   If 'disorder' is seen as a stigmatizing, negative term, does anyone with a medical condition really 'deserve' to have the label 'disorder'?    None of us like a stigma whether we are soldiers or not.   I imagine that next we are going to stop referring to Autism Spectrum Disorder and just call it 'Autism Spectrum.'  Bipolar, obsessive compulsive, anxiety, will all follow up with a name tweak. 

 Along the same note, it is frequently and loudly stated that "AUTISM IS NOT A MENTAL ILLNESS!!!"  When I look up the definition of mental illness - there are several but most of them say pretty much the same thing.  It comes down to impairment of cognitive, emotional or behavioral functioning.  How is autism not a mental illness?     I can hear someone responding already "Autism is a neuro-developmental disorder."  Yes, but many mental illnesses are also neuro-developmental disorders. Child onset schizophrenia for one.  Maybe the objective should be de-stigmatizing 'mental illness' period.  We could give it another name, but the real objective should be fostering an understanding that people with mental illness should not be shunned or shamed any more than someone in a wheelchair should be.  They are not a danger to society and with the right accommodations and/or treatment can lead productive fulfilling lives.
I've seen parents get angry when their child is referred to as 'disabled' and then get upset when their child is denied services intended for the 'disabled'.  'We'd like the services but not the stigma please.'  Here's the deal: All of our children deserve services without stigma.  You kid isn't any more deserving than another.
Yes, we can drop the term 'disorder.'  But is that really going to have the impact that we are hoping for?  By dropping a term used for one group to distance themselves from another aren't we making it clear that we should judge and stigmatize certain groups of people but not others?  Soldiers that have post traumatic stress should never be blamed for their condition.  It is a natural response to trauma.   However, no one with a health condition should be blamed for it.  It is a natural response to our environment and our genetics.

Monday, November 10, 2014

If You Want One More Person's Opinion on the Jerry Seinfeld Revelation

I have read so many pieces on Jerry Seinfeld that I find myself forming an opinion where I originally had none. Like so many things (vaccines, a "cure", ABA, the actions of desperate autism parents,) people seem to be strongly on one side of this issue or the other. I imagine most people are really just somewhere in the middle. They just don't write about it on a Facebook page.
I wasn't "offended" by Jerry's statement. But I did roll my eyes and quietly laugh. I almost did a face-palm, but not quite.
For so many, autism is a serious quality of life issue and for someone who has as comfortable a life as Jerry Seinfeld, there is no quality of life issue. Could his life be less comfortable than it appears on TV? Yes! Quite likely, in fact. But nobody's life is as comfortable as Jerry Seinfeld's life appears on TV. There is no doubt that autism hasn't held him back the way it has for so many. As a TV personality, he has a responsibility to show the big picture when he makes statements like this. To his credit he said “On a very drawn-out scale, I think I’m on the spectrum,” indirectly acknowledging that his 'autism' only affects him mildly.
To his discredit he also said “I don’t see it as dysfunctional. I just think of it as an alternate mind-set.”
It would have been nice if he had prefaced that with "The way it affects me," and then went on to recognize that it affects others in a very profound way and therefore, is a serious disability and far more than an alternate mind set, regardless of  how he sees it in himself.
I liken it to someone who says "I think I have OCD. My sock drawer always has to be set up with matching pairs." Someone with a really disabling case of OCD would roll their eyes and do a face-palm.
Personally, I think I have a very mild case of dyslexia. I am an atrocious speller (Thank you spell check!) and I am in awe of bloggers that can just bang something out without re-reading it several times before they hit post. (You can be sure I'll re-read this at least 3 times and there will still be mistakes.) I read slower than most people in spite of taking a speed reading course and spending a lot of time reading. Nevertheless, if I were on TV and I said "I think I'm dyslexic," I hope I would qualify that with saying that it is very mild and that I understand there are people who  have serious dyslexia.  They can't read at all and have trouble with road signs or finding the right grocery isle.   I also wouldn't portray dyslexia as a simply 'different'.
So I get those that see his statement as trivializing the level of struggle that they or their kids go through on a daily basis. I get that some worry his statement will make others who know very little about autism think "If Jerry Seinfeld can overcome his struggles with autism and make it in life, why can't your kid?" Haven't we all known some one that finds out about our kid's diagnosis and gone on to tell us about another autistic person they know of as if our kid would have the exact same abilities? I know I have!
Overall, I don't think it's that big a deal. We've all got bigger fish to fry. It's just such a hot topic I find myself thinking about it a lot.

Wednesday, November 5, 2014

Let's Look for Solutions

I couldn’t’ sleep last night.  I saw the story before I went to bed.  Another mother, another child with autism and another death.  People will point and analyze and name-call all over the internet.  The mother will be called everything from ‘selfish’, ‘evil’ and ‘crazy’ to ‘desperate’ and ‘broken’.  Some will say it’s the fault of the system, many will suggest it is due to a lack of autism acceptance and the myth of a cure, others will just say Jillian McCabe is simply a horrible person.  Everyone will come in with an opinion.  And none of it matters.  None of it will keep this from happening again

 I myself went through the roller coaster of emotions.  I thought “HOW COULD A PERSON DO THAT?” when I read the headlines.  Then I read the details.  She had financial troubles, a husband with MS, she was desperately attempting to raise funds and she called the police on herself.   I’m sure there was more to the story than what I read in a press release.  Sad.  Horrible.  I still don’t understand; it’s still not okay. But my opinion doesn’t matter.  No one’s opinion on this will keep it from happening again.  

Can we put something in place that will make a desperate person feel like he/she has a better option?  When this type of thing happens, people cry out “She could have called 911!” or  “She could have put her child in foster care!”   I don’t even know if that’s true.  What happens when a desperate parent calls 911?  What is the process for putting your child in therapeutic foster care?  Does it get taken seriously? Does it happen quickly?  Are the parents given any reassurance at all that the child will be well cared for? 

I think of a story I heard on a call-in show years ago.  In Nebraska, a law was passed where parents could drop off children of any age at hospitals without being prosecuted for abandonment.  The Safe Haven law was originally intended to give the parents of newborn babies an option when they felt they couldn't care for their infants, but that was not the way it ended up being used.  Parents and guardians drove their children in from all over the country to take advantage of the ‘Safe Haven’ law.  Kids, preteens and teenagers from places like New York, Georgia, Indiana and Michigan were dropped off every week at Omaha hospitals.  For the most part, these were not negligent parents dropping off kids after they had gotten tired of the responsibility.  They were parents who had been trying to get help for their children for years and always came up short.  Money to get the right care was often an issue; safety from violent children was another main concern.  When I heard the radio program on this topic many callers phoned in and said “I wouldn’t do it, but I certainly understand it.”   Safe Haven was showing the country how many families had needs that were not being addressed.   But Nebraska didn’t want to deal with the problem of children with unmet needs.  This law was intended for infants.  Low cost infants that had waiting lists of screened couples ready to adopt them.   So they “fixed” what they saw as the problem by changing the law.  Now it is only legal to drop off babies up to 30 days old.   As far as I’m aware, there was nothing to address the children whose needs were not being met.  (Please comment and let me know if I’m wrong about this.)

Maybe the original Safe Haven law in Nebraska was on to something.  Maybe this could save children’s lives.  Maybe we need to have a ‘drop off’ in place for guardians and parents who are going through life-threatening times of desperation.  More often than not, parents know when they are beyond desperation.  Usually, they ask for help and there either is no help or the help offered is paltry.   Communities and social groups do what they can, but the need exceeds the resources available.  A ‘drop off’ would give a desperate person an option that would keep a child physically safe.  Something immediate that requires no one’s approval, no paperwork and no waiting time. Too often messages are left on a social workers answering machine or people are sent home from the emergency room with a very large bill and no response to their needs.     If many children are being left at the hospital by desperate parents, the system would be motivated to get families the help they need before they go to a ‘drop off’.  Starting something like this would involve cost, but think about the mega-millions that are spent on anti-suicide fences on bridges all over this country, anti-terrorist tactics, or the prevention of the spread of ebola.  Spending a small portion of that to help prevent the killing of children should make sense.  If we value these children, something needs to be put in place.  Yes, there are people that may abuse the system.  Checks and balances would need to be part of this.  It wouldn’t be perfect but nothing is perfect.  Let’s look at the benefit.  Children that may otherwise be killed wouldn’t have to die. 

If you want to judge Jillian McCabe, I will not ask you not to.  I understand why anyone would.  Please realize, however, that judging doesn’t help stop what we are seeing.  Let’s really try to think of answers to this problem.  Parenting is hard, mental illness is rampant and people in a variety of situations are driven to a point of desperation. Harsh judgment will not change that.   How can we keep children safe when it happens?  The hand-wringing, name-calling and philosophizing won’t keep this from happening again.   Let’s talk about solutions, which will make a difference.