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.

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