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.

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.

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.

The Temple Grandin Movie - Why I Loved It and I Hated It.

Recently there was some discussion about Temple Grandin on Jonathan Mitchell's Facebook page. It made me think about the mixed feelings I had about the movie. Here they are:

I loved the Temple Grandin movie for the same reasons most of us did. It is a wonderful story.  Claire Danes is a superb actor and she was fabulous in this role.    The story outlined the frustrations and obstacles of autism brilliantly!  The inspiration to people and families struggling with autism was a breath of fresh air! That is why I loved it.

I started to hate it when I heard the take-away from people who know almost nothing about autism apart from this movie.  Last year we went to a family dinner party and we brought Naomi.  As usual we explained her condition to those that didn’t know her.   Later of in the evening one of the other guests asked “Autism, is that the condition that they were portraying in that movie with Claire Danes? “  When I told her that it was she continued.  “That movie really made a point for me.  I mean, we’re all different; we’ve all got things that are a little odd about us!  That doesn’t mean we need a cure for them.”   This was a little surprising since this same person seemed to cringe a little when Naomi moved around, trying to grab other people’s hands at this event.  Maybe she just didn’t like children in general, but I sensed she was less than fully approving of this little oddity in particular.  After hearing her refer to autism as if it were a simple ‘quirk’ I wanted to ask her if she noticed that she had eaten dinner, started dessert and was on her second glass of wine before I had even had a chance to take my first bite of anything.  That’s the life of an autism mom.  Something the Temple Grandin movie left out.  

Aside from how her condition affects me, there’s Naomi to consider.  Autism really isn’t a simple ‘quirk’ for her.  Maybe she isn’t entirely comfortable with how autism will affect her life.  The movie clearly indicated that Temple Grandin has never been interested in any kind of romantic relationship.  Most people are - autistic or not-  and yes, autism gets in the way of that.  Independent living – or lack there of, effective communication and major barriers to obtaining things that she may want in life aren’t just little ‘quirks’.  No matter how accepting the environment around her is, autism will affect her quality of life.

When I try to talk about  Naomi's future, sometimes people will say “Look at Temple Grandin!” The tone isn’t “Look at Temple Grandin!  What an inspiration!”  It’s more along the lines of “If she can do it, why can’t your kid? Stop worrying about her and get on with life!” 

I hear these things and I wonder if parents of children with polio were told not to worry, because hey, look at Franklin Roosevelt?   Somehow, I doubt it.  Somehow people got that polio was a serious epidemic and not just a quirky thing.   I wish that people would get that when it came to autism. 

The movie only briefly showed Temple as a child with her mother using flashcards as Temple sat passively.  Then suddenly, Temple is a young adult, working on her aunt’s farm, engineering a gate that let cars through and keep the cattle in.  She’s even getting ready for college in the fall.  I know there must have been a lot more blood, sweat and tears in those years between.  It’s too bad we didn’t get too much insight into them.

Then there’s the squeeze machine.  Yes, the squeeze machine worked wonderfully for Temple and I am happy that she made it work.  It doesn’t mention that since autism affects so many people in so many different ways, the squeeze machine isn’t the answer for everyone with autism.  To have the insight, the skills,  the communication abilities and the intellect to figure out what your sensory needs are and build something to address them is much more difficult and far rarer than it appears on a movie screen.  For people with autism, many of the sensory and emotional conditions are much further outside of their control then most of us can ever imagine. 

I still loved it.  I truly think she is an inspiration and role model.  I think everyone, including people with autism should strive to use their  gifts and work hard to make accomplishments.  It’s just that the difficulties that come with autism don’t go away by treating everyone like Temple Grandin.  The world of autism is so much bigger than this, or any movie can encompass. I guess it’s like dismissing racism by pointing to Barak Obama or figuring that we don’t need to help people on welfare by pointing to JK Rowling. It is far more complex world out there.   So yes, Temple Grandin does not need a cure.  Many others do.

 

Puberty Just Shouldn't Start So Young

With Naomi's recent passage into puberty at 9, it made me think of a story I heard on NPR a few months ago.  It was about the increasing number of girls that are going through puberty at younger and younger ages.  The piece was titled Puberty Is Coming Earlier, But That Doesn't Mean Sex Ed Is. Children as young as 6 were interviewed as they discussed how they noticed the changes in their bodies and how they and their families responded.  Puberty at 6?  This was all discussed kind of matter-of-factly without an expression of alarm or concern. The only problem the story seemed to indicate was that sex education, which covers puberty, doesn’t start until 5^th or 6^th grade.   Too late for many girls in this generation.  So the answer, it seems is to start sex ed. sooner.  Maybe around kindergarten would be good.  A pediatric endocrinologist is interviewed in the piece and she discusses the importance of early sex education.  She adds that there may be something in the environment that is causing this change (Gee, ya think?)  but the girls don’t necessarily have a medical problem.
How long do we have to keep out collective heads up our asses before we say “There must be something going on in the environment for so many girls to be starting puberty so early and we need to do something about it!”  Looking at hormone disruptors, in our plastics, our food and our chemicals may be a no-brainer place to start.  You don’t have to be a scientist for this to make sense.  But no! We can’t ask the developers of modern convenience to take any heat.  That might hurt their feelings.   We’ll leave it to social services!  Earlier sex education! That’s the answer.  And when we find out that early puberty may result in some serious health complications later in life? (Yes, there is evidence that that puts a person at greater risk for breast cancer.)  We’ll cross that bridge when we get to it! In the meantime, let’s just educate young people that “being physically mature doesn't mean they're ready for adult relationships.”  (This was the pediatric endocrinologist’s advice. )  Is it pessimistic of me to think giving children these words of wisdom, isn’t going to help much?   At least they are not saying “We don’t know if girls are really going through puberty earlier or if the system is taking note of it more.”   I guess I can be grateful for that.

Dog Poop

"Touch Spotz butt.  Touch it! Touch it! Go... touch!  Dog poop!  Touch the poop.  Spotz!  Stop pooping! Eat the poop. "  We hear these phrases with loads of giggles multiple times a day.  It all started with our stay in Georgia last spring.  We went to the local playground and there was a piece of dog poop some irresponsible dog owner had left on the mulch.  Ever since then it has been the phrase she has said when there is nothing else to say "Dog poop."

When we got the dog in May the obsession actually decreased for awhile, but then it picked up.
"This is?" pointing to the dog's anus.
'I'm not going to answer.' I think to myself
"This is? This is?  THIS IS???"
After relentless questioning  I finally decide to answer. "His butt.".
"Touch Spotz butt!"  She says and giggles like crazy.
She will get down on the floor just to get a good view of his anatomy.  Unfortunately, his tail is always upright, giving her full view. 
Yes, I know that she does this to get a rise out of us.  We've tried the extinction thing.  Ignoring, ignoring, ignoring.  But in the end, she finds the idea so entertaining that it doesn't matter how we react.  Just saying it to herself makes her giggle like crazy. 
We've scolded her, we've threatened to send Spotz away.  The latter response sometimes gets her to stop temporarily, but she's at it again a little later. I'm not sure what to make of this.  One part of me says "Toilet and anatomy humor is something we all have laughed at at some point in our lives, especially when when we are kids and heck, the dog doesn't seem to mind." But I also worry about limits of this fascination. If she thinks it's funny to stare at and talk about touching the dog's butt, is she going to think it's funny when it comes to another person?  No, that hasn't happened, but recognizing appropriate limitations has never been her strength.  Maybe now's, the time to make it clear that this behavior will not be tolerated. But how do we make it clear?  Punish her severely?  That may make her recognize that we don't like it, but what will it really teach her?  I wish I could sit her down and explain that it would NEVER be okay for someone to look at or touch her that way, and it is NEVER okay to do that to another person.  I wish I could  tell her that although looking at a dog like that is different than looking at a person like that, it's still rude and shouldn't be done.
Last Friday was a teacher work day.   I took Naomi out and the days was filled with "Dog poop" and "Spotz butt" and loads of giggles.  Toward the end of the day she got quiet and serious and I worried. "Naomi are you okay?"
"You're okay." She would seriously mutter.  She continued to stay still and serious.  I worry at these times because I know from past experience that still and serious usually mean that she's ruminating about something.  This is a signal that her mood is changing.  What follows up.... Well, it's just not pretty.  I actually considered distracting her by asking about 'Spotz butt.' 
This was when my concern changed.  At first, I was worried about how 'appropriate' her fascination with "Spotz butt"  and "Spotz poop" were and how that thinking may carry over, but now as I watched her verge of a dark mood, I would gladly welcome some toilet humor.  My concern over 'appropriateness' seemed small and insignificant.
This situation made me consider how much time Naomi has to spend just thinking to herself.   People who can't carry on a conversation, follow a story on TV or  read a book spend a lot of time with their own thoughts.  For anyone this is challenging.  A recent study showed that most people find it hard just be alone and think for just a few minutes.  In fact, many people in the study preferred to give themselves electric shocks rather than than just be alone in their heads.  How much time, every day, do I expect Naomi to be alone in her head?  Even though we go out into the world much of the time, she still is expected to keep herself entertained by her own thoughts a great deal.  It's inevitable and it's tough.  So with this in mind, I've changed my position on endless jabbering about "Spotz butt" and "Spotz poop."  If it amuses her, keeps her happy and bridges the time between one activity and the next, then it's okay with me.  Sure, people in the grocery store will give us strange looks and I still will look out for any similar fascinations with human anatomy, but like so many things we worry about, it may not ever even happen. Think about whatever keeps you happy, girl!

There are Some Positive Aspects to Autism Parenting

I’ve been a bit of a Debbie Downer when it comes to autism lately.  I need to think of some of the positives.  I often read posts from parents claiming that if there were a pill that could immediately cure autism in their child without side effects, they would not have their child take it. I don't think I could ever find that much positive in autism.  I would beg, borrow, steal and  maim to get that proverbial little pill.  In any case, that pill doesn’t exist at the present time, and although I wish it did, there are some things that I can be grateful for when it comes to this autism parenting thing.   The things I am about to list here are simply things that I can be grateful for when it comes to autism as it presents in Naomi, these are not necessarily great things about autism parenting in general. 

The Autism Scholarship  -  We live in Ohio where we can opt out of the public school system and use the autism scholarship for Naomi’s education.  I am very grateful for this, and I am aware that many families do not have the options offered for school choice.   I wrote about the scholarship here.

Common Core Standards -  I don’t really know anything about Common Core Standards other than what I hear on NPR and a few other random sources, but I know I wouldn’t  like them.  Thanks to autism and the autism scholarship, I don’t have to deal with them at all.  Naomi’s education is completely divorced from Common Core. Yeah!

Homework –  I hear parents of neurotypical children speak of huge amounts of homework every night.   With the homework comes the struggle to get it done and the anxiety of the kids who spend their of time doing it.   We get very little homework and thus have less of the stress that goes with it. 

Sometimes Lack of Awareness is a Good Thing  -  Last Christmas, with winter holidays upon us and not enough plans to keep Naomi entertained, we took a last minute trip to Orlando, where we got a screamingly fabulous deal on a vacation rental.  We didn’t have the money set aside for the kind of Orlando vacation that other people were taking.  We didn’t go to any amusement parks or attractions.  We spent day after day at the pool and in local restaurants and we had a good time.  Naomi sat in our living room watching the demonstration of all the rides and attractions at Disney World on TV  and had  no expectations.   I think if she knew about all the expensive and elaborate parks that were in Orlando, it would have been a much more difficult vacation.  Her lack of awareness saved us the whining and pleading, the guilt and the stress that knowing about Orlando’s diversions would have caused.

I am also grateful for Naomi’s lack of awareness when I witness the unkindness of other children.  I have left the playground in tears far more often than Naomi has, because I am aware of the nasty comments and sniggering.  What Naomi doesn’t notice, doesn’t hurt her and for that, I am often grateful.

I don’t have to listen to endless jabbering.   I would love for Naomi to be able to converse and use language to her advantage for various reasons.  However, since she cannot converse or speak fluently, I’ll acknowledge that neurotypical kids have a reputation for endlessly talking to a degree that make their parents go cross-eyed.  Talkers also can get rude and nasty, especially in their adolescent years.    Although, it is a price I would gladly pay to have Naomi  effectively communicate, I’ll acknowledge that there are advantages!

I can buy things on the cheap! Most of Naomi’s clothes and toys have come from second hand stores.  She doesn’t care if things are new or not.  She doesn’t care about designer labels nor impressing others with her possessions.  This helps with our budget.  I can’t say for sure that this characteristic is due to her autism, but I kind of think it is.

I get to avoid some of the things I don’t want to do.  Since all of our extended family is out of town we are often called upon to travel for visits, weddings, funerals and other events.  Usually, I don't care to make the trip.  'I'm sorry, but it's just so difficult traveling with an autistic child.'  It's true that it's difficult, but it also fits my agenda.  Autism just may help me shirk of the guilt or the obligation I would otherwise feel for failing to participate in certain activities.  I've got enough on my hands; find someone else!

No cellphone for my pre-teen.  If you haven’t seen the clip from Louie CK talking to Conan O’Brien about why he doesn’t let his kid have a cell phone, you should.  You can see it here.  After seeing that clip I was more convinced than ever that kids shouldn't have cell phones.   Nevertheless, I am a real softie and I would have a hard time resisting the pleas and the pressure from my kid to buy her a cell phone when all of her peers have one.  Naomi, however, doesn’t have the slightest interest in owning a cell phone and therefore,  I don’t have to worry about that fight. Do I think she would want a cellphone if she were not autistic?  Um, yeah!

Naomi gets more excited about things than other kids.  When we took Naomi to a Laurie Berkner concert I looked around at the audience and there was no doubt that she was the most excited person in the room. Skipping, smiling and wildly stimming, she was glowing with excitement.    That was a great pay off for our efforts getting there.  I saw so many passive, bored faces of neurotypical kids and I realized that sometimes, I don’t want her to contain her excitement. Let it shine, girl!

I don’t have to deal with friends of hers that I don’t like.  Almost every parent has to tolerate their kid’s friends and those kids can fray nerves, cause commotion and be frighteningly mischievous.   Yes, I would like for Naomi to have friends, but I can be grateful that I don’t have to worry about some other kid bringing over porn, blowing up the basement or acting in a way that puts me in a conundrum.   As she gets older I probably won’t have to worry about sex or illicit drugs from influencing friends and I don’t have to worry about perverts trying to lure her over the internet.  As an autism mom, I’ll have access to everything.

Sometimes things are simpler when we do them her way.  I remember one Christmas morning repeatedly saying “Naomi, look in your stocking! Naomi, open your present!  Naomi you’re not finished opening your presents yet!”  When she finally heeded my instructions, she was not excited and happy, but pretty neutral about these rituals.  So now, we don’t do them.  You know what?  I hate Christmas shopping.  I don’t do it and Naomi doesn’t mind in the slightest.   – She loves Christmas and Santa and the decorations; she just would rather I go to the store and buy her something than make her wait for a present to be opened Christmas morning.  We don’t do Easter egg hunts.  Naomi doesn’t care for them and she doesn’t need more junk food!  We did a Birthday party one year.  I’m not sure if she was aware that the event was for her.  Now, she’s content with the celebration they do for her at school.  We bring in a cake and we're done!  Yes, I would like to see Naomi enjoy these things, but we have our own family rituals – like traveling out of town to see Laurie Berkner – that make up for them.   In pulling out of some of these events, I get to save myself the prep work and the hassle.   I’m all in favor of that! 

So there are some positives! I’m still hoping that someday that proverbial little pill will come out on the market.  Until it does, I’m remembering  that there are some things for which I can be grateful.