Tuesday, March 28, 2017

What Autism Isn't

In this time of acknowledging and celebrating those with autism, it strikes me lately that there are a lot of people, specifically parents, who don't know what autism really is...or isn't.  I've met quite a few people in a rush to self-diagnose their children with autism.  My child doesn't like the feel of their shirt!  They have autism!  My child won't clean their room!  They're on the spectrum!  My child won't eat peas!  They're autistic!  It's sad, really, because in a lot of cases there are parents who are really searching for legitimate answers to the strange behavior of their children, and on the other end are parents with psychiatric disorders all their own, looking to slap a label on their child so they can get a "get-out-of-parenting-free-card."  (I speak from personal experience; I know someone who is a narcissist with histrionic disorder who has been jonesing to emboss a baseball cap with this disorder so that she can level down from bad parenting to no parenting...)

(And WHY would you add to the disability of a child by not doing EVERYTHING in your power to make their day as good as it could possibility be?  Why wouldn't you give them a bath every day?  Dress them in clean clothes?  Make sure their house is clean?  Make sure their household pets are clean and cleaned up after?  Why make their disability worse by making their environment less than great?  Now I'm the first to tell you we aren't perfect.  There are Saturdays when Mas is in his pajamas until noon and he has straight-up bed hair until noon, as well.  My house is not always spotless.  (Can I blame that on being creative?  Hmmmm?  Can I?!)  But he gets a bath EVERY night, regardless of where we've been or what's been going on.  He gets meals at the same time every day, no matter what.  He gets his meds on time.  His outfits are organized by color and set out on his counter.  His room is clean.  His clothes are clean.  His pets are clean.   Because that's his right.  And that's my job.  And while no one is giving me reports on my progress as a parent, I feel like someone is watching me.  He's 19 and non-verbal but very demanding.  He goes by the name of Mason.)

Sorry for the tangent.  And the venting.  I digress.  Back to topic.

A lot of people don't realize, for example, that sensory problems, such as sound or touch sensitives, are just one criteria for an autism diagnosis.  Many people have sensory issues but are not autistic.  I, myself, have both sound and touch sensory issues.  While I was a music major in college, I only flushed the toilet in the music building once the entire time I was there; it was so loud and so echo-y that it felt like someone had placed my brain in a blender and turned it on high.  It literally took a few minutes to get grounded again after flushing.  I hated that feeling.  From then on, I just avoided using that bathroom at all costs, or if I did, I never flushed.  Also, when I was a band director, I trained my lower bands (they were fantastic students) to stop their warming up once I stepped on the podium.  When my feet hit the podium, you could hear a pin drop.  Why?  Because when my band was warming up, I heard all of it.  I couldn't tune out any of it.  I wasn't hearing mumbo-jumbo.  I was hearing my second chair sax player play an F natural instead of an F sharp and I was telling myself to remember to tell her to use her middle finger right hand instead of her index finger right hand in that part of the song.  I was hearing my third chair trumpet player play a low D and noticing he was not using his third valve slide and it was wayyy sharp and I needed to teach him again about kicking that halfway out for low D.  It was brutal to hear everything.  It was great for rehearsals, don't get me wrong.  But tortuous for warm-ups.  I have the same problem at home now; if the tv is a certain (medium-high) volume and Mas is having a screaming fit and the dogs are whining it is all I can do to hold it together...but, crank the music in my car, and I'm fine.  I seem to have a threshold of medium-high volume where things aren't good, but get above that and all is well.  (Also, the goal whistle for the MN Wild is a Perfect Fourth...yet the goal whistle for a game we watched the next night was a Perfect Fifth.  Why?  And are all train whistles the same pitch?)  I have a serious sound sensory issue.    Sound issues in general.  My ears are weird.  But I'm not autistic.

Same thing with me and touch.  Take a tour of my closet and you won't find a tag.  First thing I do when I get a new shirt?  Cut out the tags.  And I'm not talking a cursory, rough cut.  I'm talking a smooth, no-sharp-corners-left cut.  (Those companies that came out with no-tag shirts?  Heaven!)  If I do have a tag in, I just sit and concentrate on the way it hits my skin, all day long.  If you're talking to me, or I'm doing something else, all I'm really thinking about is that tag.  It's like my ears have cotton in them and all I'm thinking is:  "tag, tag, tag."  If I have a hangnail?  Forget it.  I will fixate on said hangnail until it is cut off.  This is why I have fingernail clippers all over my life.  So, I also have a sensory issue with touch.  But I'm not autistic.  I'm not on the spectrum.

Also, did you know the diagnosis of autism cannot be made by parental assumption?  Nor by the assumption of a teacher or a therapist?  While the school can suspect autism, the official diagnosis needs to be made by a clinician.  And it's not as cut and dried as you may have been lead to believe.  While a lot of parental input is required, especially when the child is young, there is also a lot of science applied to the equation, especially now in 2017.  Things have progressed.  Specialists who may be qualified to make the official diagnosis include:  developmental pediatricians and pediatric neurologists.  Qualified and well trained therapists can also aide in the diagnosis.  Most experts now agree that if your diagnosis comes from a school psychologist, you should also get that diagnosis confirmed by an MD.

When Mason was about 5 years old we were seeing a genius in the area of Genetics, Dr. Bradley Schaefer.  He had been attempting to diagnosis Mas for a few years at that point.  We were getting ready to move away and were at one of our last appointments with him.  I asked him, "If I were your sister and this were your nephew, what would you tell me?"  (He said this was the best question he had ever been asked.)  He said:

           "Many people in the future, particularly school workers, are going to try to label him as autistic.  Don't let them.  He has an underlying medical disorder.  We haven't found it yet, and it may take awhile to do so, but we will.  He has, and always will have, autistic behaviors and tendencies.  That is due to his area of brain damage.  The reason autism is over-diagnosed is due to kids like Mason.  They have similar areas of brain damage and doctors like to slap a label on them and call them diagnosed, to get the parents off their backs and make them happy.  Make sure you are patient and wait for the medical diagnosis for him."

And, he was right.  Wayyyy back 14 years ago now, Dr. Schaefer knew what was up.  The last test Mason had was completed last week, and two of the traits of the disorder they were testing for, were hand flapping and chewing on your fingers.  What's that sound like?  Autism.  That's where we've had to be careful.  He also didn't track toys when he was a baby.  Result?  They though he might be blind, and had a high-arched palate, hypospadias, and microcephaly and tested him for Smith-Lemli-Opitz syndrome.  Then, he wouldn't eat for years until he was about seven and then his appetite skyrocketed.  Result?  They thought he had Prader-Willi Syndrome.  Next up was four-hour bouts of playing in the middle of the night, happy demeanor, hand flapping....sounded like Angelman's Syndrome.  ALL negative.  The list goes on and on and on....What we've learned...just because it whinnies and gallops and leaves hoof prints...does not mean it's a horse.  (And, apparently, there are many types of zebras!)  If diagnosis by assumption worked, Mas would've been diagnosed YEARS ago.

Many people over the years have whispered around us, "they just don't want him to be diagnosed as autistic."  HaHa!  If ONLY you knew!  I like their puzzle motif, I like their Facebook groups, I want the t-shirt, I like all the built-in excuses...just think....the next time we're in Target and a baby cries and he pulls his pants down in the middle of the cereal aisle?  To the shock and horror of the people standing there, mouths agape?  I can just shrug my shoulders, and say, "he's autistic."  And continue shopping.  (Not saying all autistic parents do this...just saying, that I, personally, would LOVE an excuse sometimes!)

Which brings me to my next uncomfortable topic.  Using disability as an excuse.

I had an aide the other day compliment me on Mas always coming to school clean and in nice matching clothes.  It made me sad at first.  Then I got mad.  Think about it for a minute.  If you're Mas, and you can't button buttons or zip zippers or pick out your clothes or put on your shoes or run a bath or clean yourself or comb your hair or brush your teeth...there had damn well better be someone in the wings making sure you look presentable when you go out.  And our theory is, we have always felt Mas should be one level up from us...one level cleaner, and dressed one level better.  Why?  Because inherently, just by being him, and living a day in his life, he is going to end up walking around dirty.  He lives in diapers.  He drools a bit yet.  He touches every surface and still chews on his index finger.  And, people judge him.  He can't run to Target in pajamas.  He has to be dressed, hair combed, clothes on.  Otherwise people really run that judgment train.

Then there's the part of it just being my job.  I remember when my dad, who lived 35 miles away from his job as a plumber at a meat packing plant, would go to work, tirelessly, every single day.  The wind would be howling all night long during a blizzard; we lived in a small town where the only person to clear the roads was one guy in town with a tractor-or else dad had to fire up our tractor and clear the driveway so he could leave at 4:30 am.  It didn't matter how bad the weather was, dad would go to work.  Because he was needed and it was his job.  I can remember looking out the window, watching his tailights fade in the swirling snow,  thinking, "why doesn't he just skip today?  Why does he have to go in every day?  Even in blizzards?" Then, my mom, who worked at a cafe in the middle of town...she would walk through thigh-high snowdrifts to get to work.  Literally thigh-high.  No exaggeration.  Why?  Because a lot of the time we had one car, or, the roads weren't cleared yet for her to drive there.  I can remember seeing her suit up in dad's snowsuit and heavy boots and think, "why doesn't she just stay home today?  It's horrible out."  But she went.  Because she made the caramel and cinnamon rolls, and the buns.  And the other ladies from the other end of town walked through the same snow to get there, too...because they were the waitresses and they needed to be there.  It was a really simple concept, really.  They had jobs to do.  They did them.  Was there an alternative?  They never saw it.  We never talked about alternatives in our house.  They went to work.  That's what they did.

Which is probably why, growing up watching them, I now look at this job of parenting the way I do.  Not only is it Mason's right to be clean and in matching clothes with a clean butt and brushed teeth and hair, but it's also my job.  (And I don't get days off or vacations.  I remember a few years back a friend called and said what are you doing?  And I said I'm vomiting in the sink and having diarrhea in between feeding Mas bites of supper.  Because that's the gig, folks.  They call it parenting.)  And while I've had lots of people give me sideways glances and get downright nasty with me because they think it's crazy that I 'don't work,' I have yet to meet anyone I wouldn't change jobs with in a heartbeat.  In a heartbeat.  Whenever I get the judgmental women who say, "You stay home all day?"  I always have my speech ready:  "Yes.  And I have a degree in Music Education and Art Education that I'll never get to use again.  And I haven't slept in in 19 years.  I am woken up multiple times per night.  I sleep super lightly out of necessity unless medicated.  I do 1-2 loads of laundry in the middle of the night.  I have to trim my son's pubic hair so there's not so much shit stuck in it in his diaper.  I have to remove his diaper in the morning with his wet dreams in it-from his penis we had reconstructed when he was a baby which he will never be able to use with his girlfriend or wife...but which ironically works anyway!!  (ba-doom-chink!)  I have a 95 lb gorilla strapped to my back figuratively at all times, and cannot make plans with people unless I have a gorilla watcher first.    His life has been a myriad of doctor's appointments and weird symptoms and every time he gets a new one I have to look at it and decide if this is a life-threatening one or just a new weird one and do I call the doc or just chart it or Dr. Google it and worry myself into more teeth-grinding.  I have a daughter who I can only spend time with while my son is otherwise being watched so that time is minimal and she has always known her brother has to come first because he can't watch himself now can he and what kind of psychological damage does that do to your neurotypical kid and guess what if you decide to have your own kids you might get the gift of giving birth to a train wreck just like this!  If he gets mad he scratches us and spits and head butts us and my furniture is covered in damage from him and my car is too and it always smells a little bit like a nursing home inside of my house.  I do his laundry and give him baths and make his food and whenever he's home I have to be home too and if we take him out we have to avoid babies and applause or we will be scratched or he will throw a screaming tantrum and all of this is for a son who is now an adult but will always mentally be a child and will never speak and will never say I love you or I hate you or I hate pudding or I want pizza or my shoes are too tight or I hate the color blue or Leave me the Hell alone dammit and my only out is gonna be when he or I die."       ...and meanwhile you get to go to work at your 8-5 job where you get to wear nice clothes and high heels and celebrate birthdays in the break room where there's cake with white icing and red punch and people laugh and tell jokes and talk about You Tube and what was on TV lastnight and then you get to go home and see your significant other and watch tv at whatever volume you choose and go out wherever you'd like for supper and stay up as late as you'd like and laugh out loud at tv if you wish and have loud sex and sleep in on Saturdays and Sundays and you will get in-laws and grandchildren and holidays and company.  So let's talk about a trade shall we."  Of course, that speech always goes unspoken.  Because I was raised right.  But someday the wrong woman will raise her eyebrow the wrong way and that speech will be made.  With all the flourish of a Clark Griswold Christmas speech.

Tangents.  Tangents GALORE today.  Apologies.

Which brings me back 'round to what got me to this tirade....autism.  If you have an autistic child, and I know a LOT of people who legitimately do, let me just say, kudos.  Hats off.  I feel your pain, because we live some little parts of that life.  If you are a school worker or therapist or teacher and you see a parent who is self-labeling their child as autistic, or, if you are sitting together in the break room discussing why you all think this child must have autism, try to remind yourself that the diagnosis of autism is a process.  Sensory issues and/or sensory integration disorder do not a diagnosis of autism make.  They are not one in the same.  I think it's important not to add to the heap of over and wrongly-diagnosed kiddos out there; autistic and ADD/ADHD included.

Also, remember that sometimes what a child needs, is discipline.  A schedule.  A good meal.  Parental supervision and attention.  A good role model.  And, because a lot of how I view Mason's life relates to how Caesar Milan views animal behavior, (judge away) kids also need:  rules, boundaries, and limitations.  They just do.  They need to have set bedtimes.  They need to pick up their toys.  They need to do their homework.  They need to clear the table.  (The table you've set and sat with them at while you ate that good meal.)  Don't give them a label and then just call off all parenting and expectations under the umbrella of:  "but they have autism."   Sometimes what kids really need, is someone to just (gasp!) expect something of them.

Temple Grandin is awesome.  Don't get me wrong.  And having a diagnosis for your child?  Must be heady stuff.  I would love to proclaim that title.  But we should be careful drawing a line between sensory sensitivity, sensory integration disorders, and autism.  As parents, as teachers, as therapists.  Kids have enough on their plates.  Let's not add to it by giving them a label they don't need.

Friday, March 3, 2017

3/4 Doctors and Three Things...

If you're married to someone in medicine, you're never sick.  Nothing is ever wrong.  Me:  "Man my throat hurts."  My husband:  "Well, the clinic will just do a quick strep and they're usually negative.  So unless you have it for a really long time or have a screaming high fever, they can't do anything for it, anyway."  Me:  "My side hurts so bad."  Husband:  "Your appendix is gone and so are your reproductive parts.  Stomach pains are common and hard to diagnose.  They won't do anything for it."  Me:  "Man I've been coughing for weeks."  Husband:  "It's bronchitis.  It's viral.  They won't give you anything.  No reason to go in."

You get the picture.

On the rare occasion something more serious pops up, protocol in our house is as follows:  Level One:  Ignore health problems until they're really bothersome.  1)  I have a special needs kid, 2)  I'm a caregiver, 3) If I was up washing urine-soaked sheets three times during the night and scrubbing stool off the wall and floor, I tend to ignore my personal health issues.    Level Two:  Ask Husband what he thinks diagnosis is.  (It pains me to admit, on the occasions I want to prove him wrong and I go to the doctor anyway, he's 99% correct.  He should've been a diagnostician of some sort.)  Level Three: Husband asks someone at work what their opinion is of said situation.

So, if you're married to someone in medicine, frivolous doctoring just doesn't happen.  Secondly, if you have a special needs kid, frivolous doctoring doesn't happen.  We all know that going to the clinic is just an invitation to a swimming pool of germs.  As much as possible, we avoid exposing Mas to any extra germs.  (I still open doors with my sleeve over my hand or with my elbows.)  Thirdly, the more you find out about about illnesses and treatments the less you go in.

So, it was after a lot of ignoring and googling and questioning that I found myself lying on a table a few months back, waiting for a radiologist to enter the room and perform a biopsy.  The ultrasound tech had already done her part, and I was prepped and ready.  When the radiologist breezed in, I immediately had good thoughts.  He looked like Joel Fleischmann from Northern Exposure.  Good sign.  And, he was a 1/4 doc.  Had to be good.

I categorize docs by where they are in their career.

A 1/4 doc is through school and just stepping out into their career.  They're hungry.  They won't get every diagnostic dart on the board but they'll throw more darts.  They're broke and most of them are paying off mountains of debt so they try harder.  They're closer to new breakthroughs and still remember their lectures/classes; they paid attention because they were tested on those things.  They haven't seen a good sampling of all the diseases and disorders yet, so they're always looking and listening closely, hoping to find them to check them off their life list.  When they make their diagnostic guesses, we question them because they deliver their guesses tenatively.  That is a drawback.

A 3/4 doc is past the exciting part of their career and not ready for retirement.  They no longer have a desire or interest in learning; they know it all.  They don't go to conferences to learn; they go to golf and cheat on their wives.  They are no longer interested in patients-they only see dollar signs.  At this point in their careers, they are either contributing heavily to a mutual fund or paying for a lake home or two.  They have taken their Dale Carnegie courses and are good at schmoozing.  (How do you think they learned how to bang their nurses and techs?)  When they make their diagnostic guesses, we don't question them because they deliver their guesses in an envelope of arrogance.  That is to our detriment.

A 2/4 doc can go either way.  I've seen good and bad examples.  They're in the middle of their career.  They're either somewhere they like and they're dabbling in learning a bit more all the time or they're feeling stuck somewhere and therefore feeling resentful and not learning anymore.  They diagnose the easy stuff and push off the difficult cases to the 1/4 docs; quick to insult when the 1/4 docs miss the dartboard.  Or, they occasionally find the nut and diagnose the weird case and pat themselves on the back for it.  The good 2/4 docs are hardest to find.

Now, over the years, we've seen more than our fair share of doctors.  Mas remains undiagnosed, 19 years on, so we've seen quite an array of specialists.  We've seen primary care docs, PA's, NP's, Developmental Pediatricians, Pediatric Endocrinologists, Neurologists, Pediatric Neurologists, Opthamalogists, Pediatric Opthamalogists, Orthopedic Surgeons, General Surgeons, Geneticists, Physical Therapists, Occupational Therapists, Cardiologists, Pediatric Cardiologists, ENT's, Pediatric ENT's, Neurogenetic Teams, Craniofacial Teams, Dentists, Pediatric Dentists, Orthodontists, Gastroenterologists, Pediatric Gastroenterologists, etc.  The list is long.  And we've seen it all.  We've been to appointments where we've entered the room and the doctor did not even greet us; sat in silence for 45 minutes...complete silence...and just watched Mason.  We've sat through hour long appointments where the specialist spoke to us the entire time and stared at the wall.  We've been to appointments where they've called him by the wrong name, talked about diagnoses he didn't have, wanted to test for things that have already been ruled out.  We've been to team appointments that have lasted an entire day.  More than once.  We've seen some shit.

But a pretty common thread amongst all these docs?  Is where they are in their career.

I tend to like the 1/4 docs and the 4/4 docs.  You can have the 2/4 and 3/4 docs.  The 1/4 docs are hungry, anxious, earnest, eager to please.  They're not always right, but they're always trying.  They don't have all the answers, but they'll keep looking.  The 4/4 docs are hard to find.  But they have been through battlefields.  They listen, they're intelligent, they're wise.  They can level a nurse with one stern look over their glasses.  They can cut through red tape like a warm knife through butter.  Love me a 4/4 doc.  But good luck finding one.

So imagine my surprise when my Joel Fleishmann breezed into the room...a 1/4 doc...but with the demeanor of a 3/4 doc.  He introduced himself and started giving me a primer on the lymph system...arrogance dripping from every word.  He wasn't just speaking down to me, he was literally speaking down to me.  Then started telling me I shouldn't be there.  Then told me there was no reason for me to be there.  Told me he didn't consider my lymph nodes to even be enlarged, by his standards.  Then he told me the test would be too close to my jugular vein and he didn't know why I would want a test done so close to my jugular vein.  Then said after all the things he taught me about the lymph system, and knowing all the things he's told me about his beliefs, what would I choose to do?  Would I still choose to do the test?

As I sat there, lying on the table, prepped and ready for the test, words were gone.  I started to speak, but nothing came out.  I ran my tongue over my teeth, feeling my crown where the spiky tooth indent was, and wondered how to proceed.  Various thoughts ran rampant.  He is no Joel Fleischmann.  He is no 1/4 doc!  What the hell?!  Wonder what the ultrasound tech is thinking right now.  Will insurance still charge for this?  My doctor ordered this test; I didn't ask for it!  

In the end, I decided anyone with that much ego did not need to be inserting a needle that close to my jugular.

But, I realized to to your doctor, you will always be three things:
1) Age
2) Weight
3) Profession

He read my chart far enough that morning to see my:  age, weight, and profession.  47, overweight, (I've lost a lot of weight, but still overweight by his standards, I'm sure...) and a stay-at-home mom.  That's all he saw.  All he read.  (By the way, "Joel" didn't read any of my medical history...which was discovered during my cross examination later!!  He made a decision on whether or not to carry out this test based on nothing other than a cursory ultrasound; no reading of my chart and no reading of my history whatsoever.  But I digress....)

I should insert here how little I care about ego when it comes to doctors...if they're good.  If a doc deserves to be an egotist, be one.  But earn it.  I have no problem with ego.  If it's deserved.  Arrogance is another matter.

Doctors don't care a stitch about your IQ, your life experiences, your real world situation, whether you're a really nice person, whether you're caring for your dad who is in end-stage Alzheimer's or your aunt with Stage IV cancer or whether you've rescued 39 dogs...you will always be 3 things:  age.  weight.  profession.

He had no idea that I knew about the lymph system.  Or that I had a special needs son at home, and had for 19 years.  Or that I had a CRNA for a husband.  Or that I had a daughter in pharmD school.  Or that I've been reading medical journals for 19 years.  Or that I used to have to look up words like "hyper" and "hypo" and now I've moved up to looking up words like "stellidate irises" and "repeat expansion disorders."  Or that I know about polymicrogyria, and enlarged ventricles, and micrognathia, and retrognathia, and sub-ependymal cysts....Or that I'm not an idiot.  Or that I've been a patient and parent advocate for my son for the past 19 years.  Because he only saw those three things.

We are all reduced to those three things.  And while it's a sweeping generalization to reduce all doctors to a fraction, it's likewise unfair to reduce all patients to three criteria.  But it happens all the time.  It's our job to be vocal and let them know about things #4-39....even when the doc has no interest in hearing it.

I'm usually quite good at doing that.  I've been doing it for years with Mas.  We had a 'surgeon' who wanted to yank his first tube out of his stomach in the office, and then replace it with his Mic-Key button.  (G-tube)  Well, I knew how big the apparatus was under the skin and I said, no way, that's going to hurt him.  The 'surgeon' said, "He isn't aware enough to feel pain; he won't have any idea what I'm doing."  That was my first foray into advocacy.  That day.  I demanded they do it under anesthesia and then demanded this jackhole not be involved in any way.  (Of course, Howard told me he was probably not only involved, but probably the one that did it...better not to know people involved in medicine sometimes...)  But, I still had my "I am advocate; hear me roar!" moment that day.

For some reason though, it's far easier to advocate for someone else than it is for yourself.  And as I look back on this interaction with this doc, I'm wondering why it was so hard to find the words to let him know I wasn't an idiot.  To let him know I know about the lymph system...I know about doctors...to let him know I was on to his particular brand of arrogance.  But, I didn't.  I sat there quietly and drove home quietly.  I let him think he knew me based on #1, 2, and 3.

Don't let people base their judgement of you on 1, 2, and 3.  Even busy docs.  Maybe especially busy docs.  We are more than the sum of the three top things about us.  The three most mundane facts about us.  I learned a lot that day, about self-advocacy and being able to spot 3/4 docs, but I also learned that we are all worth advocating for-all of us.  Mas deserved to have a humane removal of that tube back in 1999; just as much as I deserved to be treated with respect a few months ago.  Medicine and respect don't always walk together hand-in-hand, but they should.  Don't be afraid to remind your medical professional of this the next time you are seen.  I let him get away with being a jerk...but more importantly I let myself get away with not standing up for myself.  That was harder to get over.