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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28 comments:

  1. even the famous kennedy clan had a daughter whose symptoms sound much like a form of autism and they gave her a lobotomy thinking it was the new "cure".

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  2. I read a book that discussed autism in the 1960's that said the mother's were put in institutions because of the "refrigerator mother" theory! I can't imagine being locked up because my child has autism!

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  3. Thanks for the trip through time. I love my ABA now and when I worked at a residential school for children with Autism in the late 80's ABA was also part of the treatment. Good to know it has passed the test of time!

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  4. My name is Lesley B., and I would also like to say I am grateful to live in the developed world where diagnosis, treatment and funding for treatment (in Canada, where I live, most ECS treatment is paid for by the government) is available. My husband and I adopted our son from Ethiopia (not knowing at the time that he was ASD). Thinking about what his life would have been like: growing up in an orphanage with loving, but overworked, caregivers and no chance to go to school, only to be aged out at 15 and sent on his way to try and survive. This thought chills me to the bone. There is no welfare (or any income for adults with developmental disabilities), medical care for the poor, mental health interventions or support of any kind for people on the spectrum and/or who have any intellectual or physical disability. While we did not adopt planning on a special needs adoption (and ASD in Ethiopian adopted kids is rare, more common is PTSD and other issues), we are thankful that our wonderful son came into our lives and home to a place where we can teach him and help him develop to his potential. He is a happy kid, well attached to us (adoption speak) and is very affectionate and loving. He is mostly verbal, with language, fine motor and social delays that we get awesome treatment for, fully paid for by the government until he is 6, with further funding available as he ages.
    If I have to have a child with autism, I am glad it is now, and where I live.

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  5. I am so grateful for the invention of Angry Birds -- a reward for good behavior that keeps my daughter busy by my side at her sister's sporting events. It's even age appropriate. I actually get to watch the game! -- Meg

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  6. I've worried so much that my sons autism is my fault. I had pretty intense post partum depression and I wanted nothing to do with my son for the first two months of his life. I think I'll always wonder if my coldness damaged him...

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    Replies
    1. hello almost the same with mine, too much depression during pregnancy.

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    2. Hi Liz. I come from a family full of post natal depression, all of the kids are doing great. My mother had PND with all 3 of us. I didn't suffer from PND (although I totally expected to) and my son has Autism. If the reason Autism is around is because of PND then there would be SO many more cases of Autism. My Great Grandmother suffered PND back in the 30's and was put in an institution for 30 years and my Grandmother grew up in a foster home as her Dad wasn't allowed to raise her alone. Times have changed. It is NOT YOUR FAULT. As parents (myself included0 we all spend too much time wondering what WE could have possibly done to cause Autism, but the simple fact is - no one knows. Your son is very lucky to have you as his Mum. x

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  7. Close family member is high functioning autistic and is 61. She was misdiagnosed as mentally ill and was put on many different drugs and EST. It damaged her so badly. That is why we protected our daughter as she was the mirror image of this relative. We were told that she was mentally Ill too but it didn't confirm with us. She is newly diagnosed with autism and is almost 13. Very glad that we followed our heart.

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  8. Autism Daddy, have your heard of Noah Greenfield and his story?

    http://www.cbsnews.com/2100-500164_162-193439.html

    Noah is in his 40's now. He's severly autistic and never acquired speech. His father (Josh) and older brother have written books about his life and theirs called "A Child Called Noah." You asked about where adult autistics are in earlier post. Noah's journey is one answer. I have read Josh Greenfield's book and I think you will relate. But the book is honest and heart wrenching, a realistic story of his severely autistic son. Back 4 decades ago, autism was almost unheard of in most people's circles, so Josh Greenfield was a pioneer in documenting his son's condition. But it does show that even now, Noah's future is uncertain because his parents are now in their late 70's. His brother tries to help but he has a family of his own with his own children. So how can he take on the care for his adult brother? his story is told in "Boy Alone."

    http://www.amazon.com/Boy-Alone-Brothers-Memoir-ebook/dp/B0028MVHFU/ref=sr_1_3?ie=UTF8&qid=1340669407&sr=8-3&keywords=a+boy+alone

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  9. Sorry if the first link does not work. All you have to do is Google "Noah Greenfield" and you'll find the CBS 60 Minute interview on Noah.

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  10. We have come a long way in compassion and understanding, but we have SOOOO far to go yet.

    So many of the old mental institutions were filled with autistic individuals that had been damaged by the treatments.

    I particularly like the iPod, iPad, iPhone technology for understanding - between games, communication apps, quick access to still and motion photography for documentation.

    Let's hope we make even more progress over the next few decades

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  11. LSD huh?? wow! I do feel "blessed" to be dealing with autism in this day and age. As a mom, I too feel guilty at times and wonder if I have done something wrong, especially since both of my children are affected. I also took Zoloft during pregnancy, the antidepressant I "switched" to b/c it was "safe". Have you seen the new commercials on TV now saying this can cause autism?? I have addressed this with every provider I have taken the boys to and they all scoff at the idea- if it slightly increased the likelihood that one of my kids would have autism, there is no way that it would cause both of them to be on the spectrum! Parents do not need someone like Freud to make them feel guilty- we can do that all by ourselves!!!

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    Replies
    1. I've worried that pepcid or artificial sweetners did it. Maybe they did...But, I have a cousin and both of her boys are on the spectrum too. So its probably genetic.

      And yeah, I don't need Freud to make me feel like shit. I can do it on my own as well.

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    2. There's artificial sweetners in everything. If that were the case, everyone would have autism.

      Relax. :) Even if we found a cause for it, it wouldn't change how you treat the autistic person. It's what you do after finding out that matters, not what caused it (imo).

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  12. We wonder every day what will become of our son when we are gone. Larry's story last night on Nat Geo was comforting. We hope our son's sister is as good to him as Larry's. http://video.nationalgeographic.com/video/national-geographic-channel/shows/taboo-1/ngc-autistic-artist/

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  13. I have a 5 year old autistic son. He is severe. Much like AD he has been assessed at 18 months. Today is one of those days where I am not sure how I can handle this in 10 years. Having a 5 Year old is one thing, having a 15 year old is another. One day at a time I suppose. It seems lately each day is getting heavier and heavier.

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  14. Have you heard of HANDLE therapy? It is a combination of Ocupational and physical therapy type of exercises that targets their sensory issues so ABA works better. It is making a world of difference for my son who is somewhere in the middle to severe end on the spectrum.

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  15. You asked where all the 40 year old adults with autism are - did you know that the mortality rate for people with autism is twice as high as the general population? Two of the leading causes of death for people with autism are seizures and accidents, especially accidental drowning and accidents related to seizures (you can look it up on PubMed, there was a peer-reviewed study published a few years back). A lot of babies with autism have feeding problems, frequent infections, severe intestinal distress, etc., and in previous generations many of those babies died without ever being diagnosed. I'm pretty sure my son would have died in infancy due to "failure to thrive" if he'd been born 100 years ago. So a lot of the autistic 40 year olds are no longer living. A lot of them were misdiagnosed and are now labeled "cognitively impaired." A lot of people with autism who have high intelligence are "passing for normal." We won't be able to find those elusive adults to show us the way for our kids.

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  16. Frances has a point.I hope you have read the comments I have posted here in the last month or so.I will be 52 years old in a couple of weeks.I was originally diagnosed as having "childhood schizophrenia" at the age of eleven in 1971.I was reevaluated as an adult,and found to be somewhere on the spectrum worse than Asperger's,but not as bad as classic autism.I have severe lifelong GI diseases,what they call refractory celiac.I have a lifelong history of frequent acute infections.I had chronic pneumonia for ten years.I have had four major regressions,triggered by acute infection,that lasted five to ten years each.Two as an adult.I have been acutely ill enough to have five near death experiences,from meningitis,pneumonia,or heart failure triggered by undiagnosed metabolic crisis.I have severe pernicious anemia related to B12 metabolism,and malabsorption.I have lifelong muscle wasting,and other problems due to high homocysteines.I was was born blind in my left eye.I have a severe non verbal learning disorder in addition to autism.

    I have also had my mother intervene twice to keep me out of an institution or group home.Please go back and read my comment at this blog,from May about what happened after my mother died.

    I have spent the last 10-12 years trying to find the cause of my problems.It was a long,long process with many dead ends.In December,of 2011,I finally had enough test results from enough doctors,to figure out,I have defects in folate metabolism that lead to a form of cerebral folate deficiency and folate responsive autoimmune disease.I am now on high dose leucovorin,just like the children in this study,and have had remarkable improvement,both in my autism,and in my general health.I am probably the only adult in the world getting such treatment.Read the Nature article.everything Dr.Frye says about improvement is true...if this is the cause of your autism.

    I would love to be as high profile as Temple Grandin,and use my experiences to help people,but I really have no idea how to do it,or get started.If anybody could help me do this,I would be eternally grateful.If you have my email,please contact me.

    I now realize I am unique.It was not easy to come to this conclusion.I too,was hoping to find other people in their 40s,and 50s like me,but they are not out there.

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    Replies
    1. Roger, they might be out there, but not where you can get to them. They might be in homes where they don't go on Facebook or Twitter or Blogger.

      But. I bet they have family members that do. Keep posting, and suggest your story to local news sites, see if they can set up something. Create a web page that can be shared and shared. Tell your story, and give it to people to tell to others. You know how they always say that communication is the hardest part for people with autism to learn? You've learned that part, so it's up to you to reach out furthest. You'll find them.

      My uncle would have been one of them. He fell victim to one of the other things that is hard for autistic people to learn. The difference between people that are acting friendly toward you and people that are your friends. He was murdered by people that he had recently met, he let them into his home and they subsequently robbed it, after they killed him to make sure he didn't get in the way.

      My daughter also has trouble telling 'friends' from people 'acting friendly'. Every time she says "My friend that I just met" I see Uncle Bill looking out of her eyes.

      Bill would have been your peer. He wasn't much for technology. He was all about his music. He collected all the albums of his favorite bands, and then the cassettes, too. He went to their concerts whenever they were near enough. I'm sure he would have continued his collection into CDs and MP3s had he lived long enough. He wouldn't have found you online, but his family, me, my cousins, his sisters, would have.

      You will find them, through their loved ones. Don't give up. You are not alone.

      Delete
  17. Simply amazing...I have a 16 year old autistic daughter, diagnosed with Asperger's Syndrome when she was 4. I have loved this child since the day I found out I was pregnant. I love her because she is a happy child who is happy, loves to talk to people even though she has to be helped at times because she can come across as overbearing. It's been a challenge, I'm VERY protective of my child, and she wants me to ease up a little. We are in our 50's and I too wonder about her as we get older. It is my prayer that her sister will stay close to her to lend a hand. People are cruel and I'm so glad we are exactly where we should be.

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    Replies
    1. I'm 23 and was diagnosed with Asperger's at 4 like your daughter and see myself in her (happy, talkative).

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  18. Dear LizCampbell, You did not damage your son. You did not cause his autism.

    It is not your fault. You are a good person.

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  19. Such a great post! I often think what society will think of us 20 years from now...Up to now there are NO LONGTERM studies for Autism...ABA only has short term studies as well as RDI and DIR, although they are newer based on CURRENT research so its hard to expect they would. So in 20 years due to the advances we are making now, we will have longterm studies...and Im sure they will show that behaviors and skills, need a foundation of relationship based learning..which is why the shift from behavior conditioning to developmental science!

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  20. My Uncle had autism. He wasn't much older than I was, so as a kid, we were really close. We didn't need to talk to each other, and often we didn't. Things got awkward when I got to be a teen, and we weren't sure if we could still play, or if that would be weird. We grew apart, though we shared interests still. Then he was killed. Poor Billy never did understand the difference between people that were bring friendly just to get something from him, and people that were really friends. When my grandparents got him his own apartment, with all the latest electronics, he suddenly had a lot of new friends. When they found him dead of an overdose he couldn't possibly have given to himself, and all the electronics missing, the police didn't look too hard for the culprits. After all, he was just some retard or something, right?

    I see a lot of him in my daughter. She can't tell the difference between friends and friendly people, and sometimes it scares the crap out of me. My Uncle never had the services she gets. Be he was lucky in that he was never made to live in an institution. My grandmother was a strong woman, and she would never take a specialists word when her own eyes told her different. I miss them both every day, and sometimes, when my daughter does something "especially Billy" I have to bite my lip and blink a lot.

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  21. I have enjoyed so many of your posts, but I have to take issue with this one. My severely autistic son, Jonah, now 16, has been getting ECT for almost five years to control rages so violent he ended up inpatient at Kennedy Krieger -- widely recognized as one of the best facilities in the world for treating this population -- for almost a year. Alternative therapies, behavioral plans, countless medication trials -- nothing else helped him. There's no doubt that Jonah would be in a permanent residential facility now if it weren't for ECT.
    This post, and the sensationalist image of Jack Nicholson you chose to accompany it (which isn't, by the way, what ECT looks like now or even looked like in the 1960s), does a tremendous disservice to the thousands of parents struggling to care for children with treatment-refractory aggressive and self-injurious behavior. It reinforces cultural stereotypes that are based, if you'll excuse me for saying so, on misinformation and media hype. I strongly encourage parents of kids like Jonah to do their own research: Kennedy Krieger, Mt. Sinai, the University of Michigan and the University of Mississippi are only a few of the hospitals that have reported tremendous success treating aggression and SIB in autistic kids and adults with ECT. Last year, Oxford University Press published a book on the subject called "Electroconvulsive Therapy in Children and Adolescents," by Neera Ghaziuddin and Garry Walter. I host a bibliography of almost 70 studies published in peer-reviewed psychiatric journals establishing the safety and efficacy of ECT in the pediatric population in general, and the developmentally disabled population in particular, on my website: www.amysflutz.com. I also wrote an article about this issue for Slate: http://www.slate.com/articles/health_and_science/medical_examiner/2014/04/electroconvulsive_therapy_for_autism_ect_eases_self_injurious_behavior.html
    I honestly believe there is nothing harder than caring for a child who is a threat to hurt himself or others. We need every weapon available to treat these kids -- please don't scare parents away from one of the most effective treatments.

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