Monday, June 25, 2012

If I Had To Have A Kid w/ Autism, I'm Glad It's Now & Not A FewGenerations Ago


a treatment for autism?  in the 1960s it was...


(originally written & published on June 25, 2012)


So, as many of you know my 9 year old severe asd son started having seizures a few weeks back.  You can read more about it HERE.

On my Facebook Page 4 weeks ago I wrote this...

Did I ever mention that I caught 2 of Kyle's big seizures on video on Sunday night? So when every dr or nurse would take notes and ask what the seizures looked like I would pull out my iPhone. Needless to say they were all very impressed... :-)

And some AD reader named Christal commented on it by saying this...


That's awesome. I love the time we live in. If I had to have a kid with exceptional needs, I'm glad I did it now and not a few generations ago

And that's stuck in my head for 4 weeks and I knew at some point I'd write a blog post about it.

So here goes....

Wow, she is SOOOO right!  I'm sure the next generation will be even better, but for right now this is the best time to have a disabled kid.  For the purposes of this post let's just say it's the best time to have a kid with autism.

Where are all the adults living with classic autism?  I know there's a lot more now, but there should be some of them out there.  Are they in their 40s and living with their elderly parents?  We all know Temple Grandin, but where's the rest?  Are they in institutions?

Well I'm geting ahead of myself, so let's start with a look at a brief history of autism.  I found a great
article called the "History Of Autism" that I'm going to copy & paste in its entirety below from a great website called "love to know autism".  This article was written by Ella Rain, but I've put a few things in red italics that I want to draw your attention to.

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History of Autism written by Ella Rain
The history of autism is as mysterious as the diagnosis itself. There is no formal evidence that the condition existed before the 20th century. However, some historical figures, including Thomas Jefferson, Albert Einstein and Michelangelo are believed to have had autistic traits.

Etymology
Dr. Eugene Bleuler used the term autistic around 1912 in reference to schizophrenic individuals who exhibited catatonic behaviors. The word is derived from the Greek word autos, which means self. The term referenced individuals who were cut off from their environments.

Dr. Bleuler is best known for renaming dementia praecox, replacing the term with schizophrenia. He created the word from the Greek words schizo and phrene, together meaning split mind. Interestingly, research indicates a possible link between autistic disorder and schizophrenia.

Early History of Autism
Leo Kanner was a doctor from Johns Hopkins University who used the term autism to refer to a group of children who displayed withdrawn behaviors. Kanner's autism was first documented around 1938 but was not formally introduced to the medical community until the early 1940s.

During the same era, a German scientist named Hans Asperger identified similar characteristics in a group of children he studied. He referred to the children as "little professors" because of their tendency to speak about specific subjects in great depth. Asperger's syndrome is distinct from autism but it is in the same spectrum of disorders.

Freudian Influence
Sigmund Freud's influence on psychology during the 1940s and 1950s is evident in the theories behind the cause autistic disorders. Freudian psychology suggested that children with autism were not given the proper love and attention they required in order to develop healthy interpersonal relationships. The theory remained popular through the early 1960s, and there is some evidence of it today.

Early Treatments
Autism treatments during the years following the respective Kanner and Asperger discoveries followed the Freudian psychological theories. Children were placed in foster homes to recover but the approach fell short due to the nature of autistic disorders and the misunderstood causes.

Autism in the 1960s and 1970s
Freudian theory waned a bit but the notion of poor parenting remained in the forefront for many researchers and physicians during the decades to follow. None is as prevalent as the Refrigerator Mother theory, in which the mother fails to bond with her baby.

Refrigerator Mothers
Bruno Bettleheim described refrigerator mothers in his book The Empty Fortress: Infantile Autism and the Birth of the Self published in 1967. In the book, he compares autistic disorder to imprisonment in a concentration camp. The notion is that a cold and indifferent mother leads to the symptoms of autism.

The term refrigerator mother was not coined by Bettleheim. The designation emerged around 1950. In 1949, Leo Kanner attached autism to a "genuine lack of maternal warmth" but his assertion failed to recognize siblings of autistic children who showed no symptoms of the condition.

Treatments
During the 1960s and 1970s, interventions typically included removal from the family home. Many children were placed in institutions in order to receive care around the clock. Treatments included:

•D-Lysergic Acid Diethylamide (LSD)
Electroshock therapy (which is still under investigation as a treatment for autism)
•Behavioral approaches that used aversives (punishment)
Autism was a misunderstood condition and the misunderstandings led to unfortunate interventions and treatment therapies. Developments in the decades to follow led to fortunate changes.

Autism in the 1980s and 1990s
Autism was introduced to the Diagnostic and Statistical Manual (DSM) in the 1980s. In its 1994 publication, the DSM-IV, added Asperger's syndrome as one of five pervasive developmental disorders.

Interest in autism peaked in the late 1980s and the fascination may be due to a popular movie that was released in 1988.

Rainman
Rainman sent autism into the spotlight in 1988. This Oscar-winning film portrayed Raymond Babbit, a character based on a savant named Kim Peek. Kim actually has a disorder affecting the corpus callosum. Raymond Babbit's character is a combination of Kim Peek's abilities and autistic savants. The portrayal was so powerful that many confuse Rainman's character with autistic disorders in spite of the fact that about 10 percent of the autistic population has savant abilities.

Treatments in Autism Today
The development of a deeper understanding of autism as a possible genetic condition that has a biological basis led to changes in treatment approaches in the 1990s. The prevailing intervention today is behavioral therapies including applied behavioral analysis. However, many other approaches are used as well.

•Medication can be prescribed for some individuals but most of the interventions focus on behavior including social interaction.

•Relationship development continues to be a primary concern.

Autism and related pervasive developmental disorders continue to baffle the scientific community and much of the public continues to have a poor understanding of individuals with autistic disorders. The history of autism is currently in development.
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Wow, the history of autism is a bloody mess!    :-)

So if you had an autistic kid in the 20s they thought it was a form of schizophrenia. 

If you had autism in the 40s & 50s that damn Freud blamed the parents and some kids were sent to foster homes (!) to get the love they so desperately needed from their parents. 

If you had autism in the 60s & 70s they were still listening to Freud and blaming "refridgerator mothers" and many recommended sending your child to an institution where they could experiment with LSD, electro shock therapy, and the author doesn't mention it here, but I've heard of cases of lobotomy's being recommended for treatment of autyism.  This makes me think of the book & movie "One Flew Over The Cuckoo's Nest" and makes me wonder how many of those characters were based on autistic individuals.  The guy screaming "I want my cigareetes.  I want mine!" immediately comes to mind.

And if you had autism in the 80s they were finally starting to get it & understand it better and then the movie "Rainman" came out and runined it for everyone!  LOL  :-)

Boy, I guess we should all thank our lucky stars that we have kids with autism here in the 2010's.  Because our issues and debates sound like nothing compared to the past.  Although when people hear about some of the things we tried 20 years from now (when they've found a cure! :-) they will probably think we were crazy too! 

I know my initial post about the videotaping the seizures on my iphone and Christal's response had more to do about the technology that we have today... and I could write a whole other post about how our technology & medical advancements today are helping so much more, but my brain took me here instead.

So yes, I'm glad if I had to have a kid with autism I'm having him now in the 2000's and 2010's...but I'm sure it would be even better to have him in the 2020's... (although I'd be an OLD dad :-)

That's it!  The end!

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Sunday, June 24, 2012

"Autistic" VS "Has Autism" Is this debate still going on?!

Is this silly debate about saying someone "has autism" vs saying someone "is autistic" STILL going on?!

I use them pretty interchangeably on my FB page and on my blog, but I'll ready admit that I usually say my son "has autism."

It seems to me like parents of low functioning ASD kids prefer "has autism" while highly functioning & aspergers folks prefer that they "are autistic."

People have tried to suck me into the debate from time to time or made a comment on the page or blog complaining that I'm using the wrong phrase no matter which way I go.

I really don't care to get sucked into the debate....I really dont care what you call it. It truly doesn't bother me either way..

But I will say this

Sunday, June 17, 2012

My Obligatory Father's Day Blog Post...sorry it's such a downer...

It seems like every autism blog has a special Father's Day blog post today, but I just don't have it in me.

I just haven't felt like writing these past few weeks.

Ever since Kyle had his seizures I've been on edge. My wife says I probably have PTSD.

And work's been extra stressful lately but I can't really get into that here...

And then my dad had a fall last week at his nursing home and is now in the hospital awaiting hip surgery. And with advanced parkinsons disease and at 82 years old & 110 pounds the recovery from that will probably not be easy.

And so I've been on edge. Kyle has been great, adjusting well to his new anti-seizure meds. My wife has been great, trying to talk me off the cliff.

But I've been in a FUNK. Snapping at the wife, snapping at Kyle, seeing the negatives before the positives.

On this Father's Day when all my followers are posting on my FB wall saying what a great dad I am, I readily admit that I am no picnic to live with a lot of the time. And I don't feel like a good dad, husband, son and brother these days. I can be extremely selfish.

As I said Kyle's been great, but I still get annoyed or

Monday, June 4, 2012

A Letter To My Son w/ Severe Autism: Can you try these 4 new foods? PLEASE! :)

Dear son,

I know you're not a huge fan of eating as it is. I get it. Eating is just not your thing.

But you've lost 10% of your body weight once before and Mommy worked her ass off putting those pounds back on.

So now that we've got you back to your 7 year old weight it's time to move up. Your 9 years old now buddy and in the 25th percentile for weight at your age.

But that's not what this letter is truly about. This letter is to tell you how much easier you'll make mommy & daddy's lives if you add 3, ok maybe 4 new foods to your repertoire.

These are 4 foods that are part of your family culture. If you want to be part of our Italian family these are 4 foods that you need to

Sunday, June 3, 2012

I'm A Big Worrywart & I Blame Google & My Runaway Mind

It's Sunday 3:12pm and if you read my Facebook page regularly you'll know that my son isn't feeling well today.

Yesterday he had diarrhea all day, pretty loose & pretty often but besides that he was totally himself, happy as a lark. We tried to watch what he ate and forced him to drink a lot of water. He was fine. Went to bed at his normal bedtime and got up today happy.

Then this morning he threw up a little but other than that he seemed fine all morning. Drank some water, munched on a few cheerios. Then around 12:30pm or so he got a bit cranky/ ornery like he had a stomach ache and/or a headache and at 1pm he settled down for a nap.

And I've been a nervous nelly all morning and this little stomach bug is bugging me out a little.

Why?

Cuz 2 weeks ago at about this time he had his first seizure ever that sent us to the hospital for 3 days.

And tomorrow is 2 weeks that he's on his anti-seizure med.

And so I'm watching him like a hawk and worrying.

It's the curse of google. I've done a lot more googling of "seizures" and "epilepsy" than the wife.

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ME: "Is he feverish too? Feel his

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