Tuesday, August 21, 2007

Autism Disorder Deficits - Resistance to Change

While hundreds of thousands of parents in the real world seek treatment for their autistic children, mortgaging their homes, taking on second jobs, fighting and struggling with service providers, there are many internet commentators, including some parents, who do not view autism as a disorder. Adherents to this ideology view autism as just a reflection of different personalities or neurological diversities.

According to this view, called neurodiversity by some, autism is groovy. Just breathe easy they say, relax, find the joy in your child's autism and with time things will improve. Your child doesn't talk or communicate in any way? Don't worry. If you just let up, stop abusing your child with ABA, and say nice things about autism your child will spontaneously recover some day, if you just let it happen. Let it be man, let it be.

Most parents, struggling to help their children, and dealing with the realities of living with, loving, and caring for autistic children know better. They know that autism is a serious disorder which impairs the life prospects of their children, a disorder which manifests itself in serious deficits. One of those deficits can be an extreme resistance to change. In Resistant to Change the Chicago Sun-Times tells the story of Matthew Buck and his family and how Matthew's autism, and his extreme insistence on routine affects their lives, from their daily lives to Matthew's inability to attend uncle's wedding reception because it would have been too upsetting to interrupt his daily routine.

Resistant to Change also highlights a study being done at the University of Illinois at Chicago, which recently won a $9.6 million federal grant to study causes and possible treatments of insistence on sameness.

UIC researchers will study genetics, brain chemistry, brain functions, etc., that might explain insistence on sameness.

...

Insistence on sameness is a classic sign of autism. A child might, for example, line up his toys in an unchanging order, or want to always take the same route home.

About 20 percent of autistics have extreme forms of the behavior. Interrupting their routines can trigger temper tantrums, hitting and biting. It's one of the most "troublesome and debilitating" characteristics of autism, said Dr. Edwin Cook, director of the UIC Autism Center of Excellence. And it's one of the main reasons some autistics must be institutionalized, he said.

7 comments:

Astrid van Woerkom said...

What ABA technique should be used to extinguish severe misrepresentation and misinterpretation of autistics and parents? No-one EVER says autistics shouldn't get services. No-one EVER said that children will "recover" just by seeing the joy in the child - even though it will help in coping ot try to see the positive points in your child (not saying you don't do that). Pleae stop misrepresenting people just because you disagree with us.

Anonymous said...

Hi Astrid,

I am not sure that "Autism Reality NB" has misrepresented the larger situation. Many internet blogs written by parents of autistics and by autistics pretty consistently assert that "recovery" is not a valid goal even when "recovery" implies the promotion of functional skill development and remediation of skill deficits. I think he is correct in that "acceptance" ("let it be man, let it be") and the passage of time (maturation?) is presented as an alternate strategy.

Some of these blog authors also dispute the validity of "treatment" models (ABA, RDI Sonrise or whatever) as, from this perspective, autism is not viewed as a disorder but as being one aspect of the human condition. A distinction being made by some, that is in synch with the "acceptance paradigm", is that "services" are supportive (ie "accomodations") and not focused on reducing deficits or excesses that are often assoicated with ASDs.

Seems pretty clear to me that supports ("services" and accomodations), the promotion of acceptance by all, and skill development programs (ie ABA) are called for.

Maya M said...

Experience allows me to say that:
1) Not every "expert" who tries to rob you of your last penny under the pretext of "helping" your child has even a vague idea or intention of really helping.
2) Passing time does help some children.

Anonymous said...

I personally think the problem with autism politics lies in the definition of autism as a spectrum disorder. My guess is that, when we finally parse out the many different autisms, we will find that certain diagnoses are far more disabling than others - and that many autistics are truly suffering as a result of their "neurodiversity."

The problem is that many are NOT in pain - and for those, the idea of being "cured" of their differences is - understandably - offensive.

In part, I think the problem is - who gets to decide whether an individual is suffering and thus in need of help. That decision isn't always obvious.

My own situation is a good example: my son is a happy, engaged, verbal kid with a PDD-NOS diagnosis. He has a tough time with social interaction (from my perspective) - but he's never mentioned a desire for more or better friendships. He enjoys what he enjoys - eg, playing clarinet, spending time with family and alone, reading magazines, swimming, etc.. He is NOT typical, and has no real friends in the ordinary sense of the word.

Given that situation, Harold, what do you feel would be the correct parental response, treatment, intervention? In short, my son has no physical or mental illness though he is autistic. Does he need to be cured? (I'm asking this for real - though I have an opinion, I vacilate!)

Lisa
www.autism.about.com

Autism Reality NB said...

"My guess is that, when we finally parse out the many different autisms, we will find that certain diagnoses are far more disabling than others - and that many autistics are truly suffering as a result of their "neurodiversity."|

Lisa,

As the parent of an 11 year old boy with classic Autism Disorder, assessed as severely autistic with profound developmental delays I can tell you that we do not have to wait to find that certain diagnoses are far more disabling than others. That is known, and has been known, for some time.

I am not seeking to cure Jim Sinclair, Michelle Dawson or any other high functioning autistic person. That is their decision to make. It is the decision of parents to make while their children are young as to whether they should be cured or treated. It is not the decision of high functioning autistic stragers to tell parents not to treat or cure their autistic children, not at all. It is your decision, and if your child can communicate his wishes, your decision together as to whether he would accept a cure if one becomes available.

You have a neurodiversity perspective that is reflected in your comment and on your blog, including your selection of Neurodiversity sites as representative of autism blog sites, so I know what your answer is to your quasi-hypothetical question about your son.

As for parents of low functioning children trying to cure or treat their children try imagining your child biting himself/herself, putting his hands through windows or walking into traffic. I have experienced these things with my son. I have also, with hard work and ABA, and the help of some good people, brought him to the level where he can read at a a Cat in the Hat level - he is 11.

If I could cure my son, eliminating self injurious behavior, advance his understanding of the world to an average level, give him a chance at an independent life, I would do so now, immediately, without hesitation. As for the ND autistic persons I wish them well but I wish they would stop telling the world that they have walked in my son's shoes, they have not.

Fore Sam said...

We keep finding more evidence that the most famous of the neurodiversity cult are not even autistic, Sinclair, Baggs and Williams who were all allegedly diagnosed as adults. It's just a sham, Harold. Thanks for helping to expose the insanity.

Autism Reality NB said...

Fore Sam

I have been reading, with great interest, you series of articles on Amanda Baggs. I have checked some of the posts you referenced on their original sites.

I am troubled generally by high functioning autistic persons pretending to speak as authentic voices for low functioning children like my son and by their attacks on parents seeking to cure their children's autism disorders.

In Ms Baggs case I am not qualified to dispute her physician's autism diagnosis and do not do so although I find your information concerning her arrival at that diagnosis interesting.

What troubles me about Ms Baggs is that she is presented to the world as a LOW FUNCTIONING autistic person notwithstanding her obvious intelligence and communication skills. She is most certainly NOT representative of low functioning autistic persons and she should not be purporting to speak on behalf of truly low functioning children like my son Conor.