About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Sunday, December 16, 2012

Thoughts on Newtown

In no particular order:

  1. Feeling a planet of grief and sorrow for those lost lives, the survivors and those who lost loved ones.
  2. I'm not aware of a cogent argument in favor of legal possession of automatic assault weapons.  And if there isn't one, why is it legal?
  3. I fear stigma and prejudice because the shooter was reported to have asperger's
  4. This is incoherent.  Jared Loughner has schizophrenia and, as a result is, disabled.  Does ASAN believe that there is no connection between his disability and his actions?
  5. People across the neurological spectrum - from neurotypical to asperger's to schizophrenia - have murderous impulses.  And someone who has murderous impulses is probably more likely to carry out the commission of a murder.  Murderous impulses may correlate to gender (e.g., male) and it may correlate to a neurological condition or a mental illness (e.g. sociopath) or it may not (e.g., the Oregon mall shooter).  But to focus on screening a certain group misses the point because perfectly sane people have murderous impulses.  To make this world safe for our children, prevention must focus on preventing a person from converting that murderous impulse into a murder: gun control.
  6. If the mother of the shooter didn't die, she'd have blood on her hands.  She failed to secure her cache.  If you own a gun, and you fail to secure it, and that gun is used in the commission of a murder, it may not be a crime, but in this blogger's opinion, you are morally culpable.  If you can't secure your gun, don't own a gun. Period.
  7. Congress and the President have blood on their hands for not waking up sooner.

Sunday, November 25, 2012

Quick Hit: The Man vs. the Therapeutic State

The Man vs. the Therapeutic State:

As Marcia Angell, former editor of The New England Journal of Medicine, observed last year in The New York Review of Books, “there are no objective signs or tests for mental illness…and the boundaries between normal and abnormal are often unclear. That makes it possible to expand diagnostic boundaries or even create new diagnoses in ways that would be impossible, say, in a field like cardiology.” In other words, mental illnesses are whatever psychiatrists say they are. 

Friday, August 10, 2012

Developmental Milestone

Drumroll please.

The results of Brad's most recent annual speech eval are in, and he's testing in the average range or better for receptive, expressive, simple narratives, complex narratives, pragmatics - everything!  Yay!  It took him until age 6.5 to get there, but he's there.

Previous posts on prior speech evals here, here, and here.  

It's been a long journey.  It's not over yet, but this is me, smelling the roses.  

Saturday, March 31, 2012

1 in 88: On Diagnosis "Creep"

The New Autism Reality, by Ann Bauer:
If one in 88 among us is this way, it makes autism seem a little less terrifying and abyss-like and a little more like something that just happens in life. 
Today, when people ask about my children, I tell them my oldest has autism and the vast majority nod without horror. They act like I said he has Crohn’s disease or some other lifelong but manageable condition. They ask if he’s going to college, if he’s married, what he does for a living. With the “creep” of this diagnosis has come a welcome acceptance. My son, like a lot of people, is struggling with something difficult. But he’s doing so valiantly, and it doesn’t define him.

Monday, February 20, 2012

Proposed Revisions to the Diagnostic Criteria for Autism Spectrum Disorder

As you may have heard, the American Psychiatric Association has proposed sweeping changes to the diagnostic criteria for autism spectrum disorders (ASD). As a result of these changes, it is estimated that 45-80% of those previously diagnosed with an ASD will no longer qualify for that diagnosis. I understand that there may be a new substitute diagnosis referred to as "social communication disorder", which may be applied to those who no longer qualify as having an ASD.

There are so many Big Issues that I don't feel qualified to weigh in on here. Will this lead to a more or less just allocation of resources? What about the issue of identity? After all, "asperger's" is more than just a label; there are huge swaths of people who identify as "asperger's." You can switch up a diagnostic manual, but you can't just take away a sense of identity from people. Will those with asperger's coalesce around the new label ("social communication disorder")? How will these changes affect my son? These are fascinating questions. I don't have answers.

I'm writing in reaction to a post I read by another blogger, and I'm just writing to put my anecdotal experience out there. Writes another blogger whom I admire and respect (emphasis added by me):
I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets. If it's true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed. If so, where is the outcry over waste? There isn't any, because it's universally accepted among recipients that the services ARE needed.
With all due respect, I wouldn't say that this is universally accepted. May I direct you to Exhibits A, B and C. Not every child benefits from intensive ABA. The agency we used at one point told us Bradley doesn't need the services they were providing. They set up goals for him, recorded his progress in a binder and it soon became obvious he wasn't enough developmentally impaired to benefit from the program. He maxed out very quickly, meaning he met all the goals they established. In hindsight, this was a colossal waste of resources when you consider the cost of ABA and the children in other communities who are much needier and who don't have access.

You may counter that my family is in the minority because I am in Massachusetts where services are abundant. True, but autism advocates lobby national companies to add an autism benefit. If a national autism benefit were added, families like mine represent potential claims experience - a substantial liability with respect to which the benefit of coverage is uncertain. The new definition of autism represents a way to manage that liability and tie it more closely to a population that is more likely to benefit from the services. Managing that liability may, in turn, result in increased coverage. For this reason, my at-first-blush reaction is that the revised definition will be beneficial.