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The Mystery of the Undisclosed Diagnosis

  • Posted on November 12, 2014 at 10:00 AM

My husband Mark has been in and out of mental health treatment (outpatient services for the most part) for bi-polar disorder, a.k.a. manic-depression, since he was a teenager. For much of this time, he has received his psychiatric services from the same doctor who, for the most part, simply provided him with medication. These meds have changed a few times over the years, but for the most part he responds fairly well to the medication.

Recently, he noticed that his pill bottle described “schizophrenia” as the reason for the prescription. This was odd, because he’d never been told he was schizophrenic and what he experiences doesn’t seem like schizophrenia at all. But his doctor is now retired and he won’t be seeing the nurse practitioner who took her place (temporarily) for a while, so he brought up this “new diagnosis” to his therapist. His therapist accessed his records and, as best he can tell, the “schizophrenia diagnosis” is nothing more than a clerical error. But in refuting the diagnosis that Mark had seen on his pill bottle, the psychologist discovered something interesting.

Mark’s records included an official diagnosis from his long-time psychiatrist that Mark had never been told about. Apparently, Mark has an official diagnosis of Asperger’s syndrome, as well as bi-polar. This isn’t a surprise in the sense that we disagree with the diagnosis—we’ve long suspected that if Mark ever wanted to go through the same diagnostic process we went through with our children, then he’d be diagnosed with Asperger’s syndrome. This is a surprise because he’d received the diagnosis without that process and without ever being told that he’d gotten it.

In all fairness, the diagnosis doesn’t change anything. Mark’s primary diagnosis is still bi-polar disorder; that’s the one he needs ongoing treatment for. A secondary diagnosis didn’t change anything with his old psychiatrist, because she’d already been working with Mark’s quirkiness and knew how to handle it, which is why Mark always opted to be under her care when he needed help to manage his mood swings. A secondary diagnosis didn’t change anything with his therapist either, for the same reason. It may help the new people coming on board, but it doesn’t change which medication works with the least side effects nor does it change anything about Mark’s life.

The only thing it does is confirm what we already suspected. Mark is an Aspie. While I don’t quite fit the usual diagnostic criteria, we know that I am, at the very least, adjacent to the autism spectrum myself. Thus, when our genes combined, we created three autistic children. We already knew this!

That being said, it’d be kind of nice to know when one gets a new label slapped on oneself, don’t you think?

Out of (Self-)Control

  • Posted on December 11, 2010 at 11:51 PM

Yesterday was Alex’s eleventh birthday.  At first, I was going to write a post reminiscing on how Alex used to be so sweet and happy and calm; and I was going to compare that to how worried I was about his escalating aggression and lack of self-control.  But, yesterday went so well.  He was excited and hyper, but he was happy and having a great time.  I decided not to write that post.

Today.  Today, Alex fell off a chair.  It wasn’t a big fall, and he wasn’t badly hurt.  He landed on his side, and it was clear to me that he struck the side of his face when he landed.  The skin was extra white and a little puffy.  I tried to help him, but helping him became a wrestling match.  He was hurt and wanted to lash out.  He needed to lash out.  And that’s the way things have been lately.  When things go wrong, Alex’s frustration and anxiety shoot through the proverbial roof, and he melts down almost immediately, except instead of melting down he lashes out:  biting, pinching, hitting, and kicking whoever he can reach.

We’ve tried everything we know to do.  We’ve tried everything the school staff knows to do.  We’ve sought outside advice.  But none of it has worked.  Alex’s aggressive behaviors are getting worse.  He’s ability to concentrate on his work and self-regulate is getting worse.  He’s out of his own control.  It’s not just that he’s out of my control or the school’s control; he’s out of his own control.  And we’ve tried everything short of medicine to alleviate his distress.

I hate the idea of drugging my child.  There is such an ugly history of using chemical restraints to induce external control on individuals with psychological or developmental differences.  It’s an ugly, ugly history and I want no part of it.  I don’t want to force my child to take drugs so he can be manageable.  And that is what I see.  I don’t think of it as medicine, but as a chemical restraint, an attempt to make him manageable.  And I don’t want any part of it.

But today….  What if Alex had been seriously hurt?  What if he needed to go to the emergency room?  Considering the trouble I had examining him after his fall I know we would have needed physical restraints to hold him.  If he had a neck or head injury, he could have done himself serious damage, just struggling to lash out.  If he needed emergency care, they would have drugged him just so they could treat him.  It wouldn’t be something that’s right for him.  It wouldn’t be something given to him in monitored doses.  It would have been chemical restraints given in an emergency situation so he could be treated for his injuries.

I don’t know that the medication that’s been recommended will prevent that need.  I don’t know what it will do, and the doctors aren’t really sure either.  It’s an attempt.  It’s an experiment.  And I hate that, too.

But, if it works, it will help reduce the aggression and the anxiety, it will help him stay calm and self-regulated, it will help him learn and communicate.  It may make a big, big difference in his quality of life.  And that would be wonderful

And if it doesn’t work, we can stop it.  Try something else.

But I still don’t like it.  I find the very idea repugnant.  But we’re out of options.  If the situation continues as it is, it’s just going to get worse.  Alex doesn’t need to get much bigger before he’s truly dangerous to himself and others.  And that’s not Alex—it’s not the sweet, happy person Alex could be.

After yesterday and today, and all the many days in the past, it’s becoming clearer and clearer that Alex is probably bi-polar like his father.  And as rough as that is, that’s not what’s bothering me.  As rough as the behaviors are, they’re not what’s bothering me.  And it’s not just the need for medication, either.

Even knowing there is no answer, I want to know why.  Why is Alex the one who has to go through all of this?  Willy and Ben are autistic.  They’re just autistic, but being autistic is enough of a challenge in this world.  Alex is autistic, with (formerly) bad tonsils and bad adenoids, bad eyes, hernias, nutritional deficiencies and resistance to the special diet that would address those deficiencies, and now probable manic-depression.  Why are Willy and Ben basically healthy and well-adjusted?  Why is Alex not?  Why does Alex have to deal with all of these complications?

It’s not that I wish Willy and Ben were more sick.  Of course not.  But why does Alex have to go through so much?

Recently I read a post by Sarah on PlanetJosh.  And I can relate to that.  I want to scream at the top of my lungs—to nobody in particular, to the universe at large—LEAVE MY SON ALONE!!!