Friday, January 25, 2013

The Harsh Reality End of the Autism Spectrum

If you believe IACC Neurodiversity advocates  present and past,   Ari Ne'eman and Matthew Carey,  autism is not something that should be cured.  You won't see much about the harsher aspects of life with autism disorders if you read their writings. In their view autism is nothing more than a different way of thinking, not a ...  disorder ... or group of challenging symptoms for which cures are needed.

No, the enlightened  Neurodiversity thinkers who are selected to represent the mythical "autism community" at the IACC see autism in the image of the members of the ASAN Board of Directors, researchers who work with Dr. Laurent Mottron or successful entrepreneurs.  For them, and other ND True Believers,  autism's greatest horror occurs on those rare occasions when a media outlet like Slate presents a perspective of a parent whose child presents with autism, intellectual disability and seizures, to say nothing of serious self injurious behavior or unintended aggression toward family and others who actually care for them.

I was surprised today to see CNN present a video of a family using marijuana to alleviate their son's very serious self injury.  Below is the video as shown on KPTV 12 Portland, Oregon  showing some painful realities from the harsher, severe end of the autism spectrum, far away from the irrational ideology of the Neurodiversity advocates who misrepresent autism to the world:


Following is a video From Kim Oakley a gutsy, honest mother of a severely autistic son with epilepsy and author of the blog Autism, Epilepsy and Self-Injurious Behavior, also much different from the high functioning autism of  media stars,  academics and ASAN corporate directors:

 

In the DSM5 the APA is continuing the process of eliminating the intellectually disabled and most severely challenged from the autism spectrum.  They are reducing the intellectually disabled from the vast majority of the autism spectrum pre-DSM-IV to the small segment that IACC Neurodiversity rep Matthew Carey falsely presents to the world.  

This forced removal of the intellectually disabled from the autism spectrum will not help them. It will not aid us in understanding why persons with symptoms of autism, intellectual disability and epilepsy are so prevalent in association with each other.  It is not based on "science".  It is intellectually dishonest. It is cold indifference to the realities of severely autistic children and adults. 

Autistic children and mothers were once hurt by the unsubstantiated cold mothers theories of Kanner and Bettleheim. Today it is in fact parents who know of the realities facing their severely autistic children far better than the academics and Neurodiversity ideologues who are once again banishing them from sight.  

Today the real cold parents are the clinical and research professionals who are supposed to help autistic children but are abandoning those most in need of their help. They are, to borrow the APA expression, cleaving meat loaf at the joints. they are cleaving from their sanitized spectrum those who present with the most challenging autism symptoms. 

11 comments:

Roger Kulp said...

So,you think Kanner will be discredited just like Bettleheim?After all,his autism is very different from what is being pushed now as autism.

It isn't just ASAN.It's ARI,and other organizations like ARC.When they talk about adults,they always talk about people who can work,or live independently.None of the panels or programs they have include autistics who,for whatever reason,are too disabled to work.I do think we are in the minority,which is why the best hope is to look for other causes besides "autism".

I am one of the lucky few,in that a cause for this stuff was found for me,just in time for me to be able to live on my own,after my mother died.Have you made any plans for Conor when you're gone?

It would be nice families of more seriously disabled autistics,both intellectually disabled,could join together to form our own organizations to counter all this stuff.

Roger Kulp said...

So,you think Kanner will be discredited just like Bettleheim?After all,his autism is very different from what is being pushed now as autism.

It isn't just ASAN.It's ARI,and other organizations like ARC.When they talk about adults,they always talk about people who can work,or live independently.None of the panels or programs they have include autistics who,for whatever reason,are too disabled to work.I do think we are in the minority,which is why the best hope is to look for other causes besides "autism".

I am one of the lucky few,in that a cause for this stuff was found for me,just in time for me to be able to live on my own,after my mother died.Have you made any plans for Conor when you're gone?

It would be nice families of more seriously disabled autistics,both intellectually disabled,could join together to form our own organizations to counter all this stuff.

Roger Kulp said...

I just watched the news story.I wonder if the family has looked into getting him out of that home.Those parents made a big mistake.I just did a quick search,and there is quite a bit about marijuana controlling seizures in tuberous sclerosis.The first two articles I looked at mention using cannabis in older children.

Just another case of self abuse being caused by seizures that improve once you treat the cause.Just like me.

You could easily say that boy is not autistic,he has tuberous sclerosis.Research into autism is not going to help him,but research in tuberous sclerosis will.

Anonymous said...

I pray that doors will be opened and that an understanding of the cause , the cure the help needed will come for these folks suffering from autism and all other related disorders.

Anonymous said...

I just want to say I read your blog frequently. You may remember my blog: The Invigorating Ride of Autism Recovery" or something like that. Needless to say, I had to take it down for some reasons, but although my son "recovered" (40 hrs week from 1 1/2 to 6), I have not forgotten individuals like your son. I agree with everything you post! I am in my last year of my M.S. in ABA program, and your blog echos us in the ABA field (well, for those of use that base our decisions on empirical evidence instead of pseudo-science. I am irate at the fact that intellectually disabled are not included. I work with ages 3 to 15 and to not include those that do in fact have autism is ludicrous!

Roger Kulp said...

One more thing.I don't think it can be said enough a lot of those in ASAN are self-diagnosed.Wish me luck,I leave in the morning to see Dr.Rossignol in California.

Lea @ Doula Training said...

One of my wish is make people experience the normal life. A life that won't let them feel that they're different, but a life full of acceptance and understanding.

Emma said...

I completely agree with your post. Thank you for your clear presentation of the harsh reality of too many people on the severe end of the spectrum.

Anonymous said...

http://adiaryofamom.wordpress.com/2013/01/30/meow/

One of the most pathetic posts I have seen in a long time regarding the ND parents pushing the "autism is wonderful, it's just different" themes. This is almost as bad as the Welcome To Holland poem.

According to Jessica Wilson we are supposed to be happy we got a severely disabled child rather than a child who can grow up, have friends and actually have a productive life without therapies, medications, seizures, self injury and massive cognitive problems.

Parents like this should just STFU. It is so frustrating when the world thinks autism is just some cute variation because parents like this put that out as truth.

Anonymous said...

Her daughter is high functioning and she is besties with Ari and lots of other ND believers and self diagnosed adults so it's no surprise she takes this position. It's just too bad she is using her voice in this way. It makes it very hard for parents of lower functioning children.

Roger Kulp said...

Lea @ Doula Training said...
One of my wish is make people experience the normal life. A life that won't let them feel that they're different, but a life full of acceptance and understanding.


Yes it is wonderful to be free of autism,even if it means being on very high dose medication for the rest of your life,

Read this.