Bye Bye Asperger’s Syndrome?

Autism is considered a ‘spectrum’ disorder for a reason. It’s a broad lable encompassing many different types and levels of symptoms. When a child’s condition is unknown, they’re usually labled as Autistic because it covers such a wide variety of behaviors and aspects. Asperger’s, while logically it does fall under the Autism ‘spectrum’, is a specific subset of symptoms and should remain a classification to aid in treatment for the specific symptoms. In fact, I think more subsets should be broken out from under the Autism ‘spectrum’ which is used mainly to give a diagnosis when the symptoms don’t fit anything better, not as a diagnosis in itself. In fact, why not just do away with Depression, Mania, Bipolar, ADHD, and Oppositional Defiant Disorder to name a few and put them all under an umbrella called Behavior Spectrum Disorder?

You should post this piece over at USC’s Reporting on Health. http://www.reportingonhealth.org/

Remember, the basis for removing the Asperger Syndrome (AS) diagnosis is the overwhelming research and evidence for many years proves there is no significant difference between AS and high-functioning autistic disorder. By removing the AS diagnosis and calling it “autism” it will give access to untold numbers of children through adults to needed services previously denied to them. Per Patricia Howlin in Autism and Asperger Syndrome: Preparing for Adulthood, 2nd edition, 2004: “Asperger Syndrome is often referred to as a ‘mild form of autism’. Nothing could be further from the truth…A recent follow-up study by Gillberg and his colleagues, for example (Billstedt 2003), has indicated that quality of life ratings for more able adults with autism are actually lower than for those with moderate to severe intellectual abilities.”

Asperger’s is obsolete as a diagnosis, and has been ever since we figured out that most people now diagnosed with Asperger’s are also diagnosable with DSM-IV Autistic Disorder–even more annoying because Autistic Disorder is supposed to take precedence. There’s no good reason to keep the label when it’s redundant and serves no purpose. The simpler the labeling system can be while keeping its meaning, the better.

In addition, there’s a fairly arbitrary split between people diagnosed “Asperger” and high-functioning people diagnosed “Autism”. The big difference between these two categories is that the people with Asperger’s had speech before three (though it was probably unusual speech), and the people categorized Autism usually did not. In the high-functioning group, they almost universally catch on to speech by age five–after which they are, especially in the teen and adult years, functionally identical to Asperger’s.

The problem is that this difference in speech acquisition isn’t the only difference that you can find among people with HFA/Asperger’s. It’s just the only difference that people split the two groups apart by. There are other differences–significant ones–that do not fall along the lines of the HFA/Asperger’s split. For example, interest in socializing ranges from clumsy, insistent interaction to complete indifference within both categories. IQ ranges from borderline to genius in both groups. Adult prognosis ranges from “needs constant supervision” to “raising a family and holding a highly-paid job”. And while people diagnosed Autism tend to be lower-functioning on average, this could just be because stereotypes prompt Asperger’s as a diagnosis in an individual who fulfills Autism criteria–because the individual seems intelligent. (Asperger’s is stereotypically associated with intelligence.)

It’s about time we got rid of the confusing Autism Spectrum, as it now is. When there’s enough diagnostic confusion that most people diagnosed Asperger’s could be diagnosed Autism, and when fully half the Pervasive Developmental Disorder diagnoses are PDD-NOS, something has to be done.

We’re just going to have to face it: Autism is a diagnosis with huge variations from individual to individual, and while knowing “autism” about somebody might tell you some things about them, you’re going to have to look at their specific case. Standardized treatment according to the diagnosis doesn’t cut it now, and it won’t be any more useful once they merge the spectrum; but at least we may be forced to consider each case individually, as we should’ve been doing all along.

I’m not surprised this has been a controversial article. There seems to be quite a divide between those who would applaud the amendment to the DSM on the basis that a classification of mild autism rather than Aspergers might provide access to services previously denied to people with Aspergers, and those ‘at the coal face’ who identify with the challenges associated with being a parent of a child with Aspergers. Whether the challenges can be said to be unique to Aspergers might be a matter of contention in itself, but at a base level the different classifications are an aid to gaining some perspective on how to cope.

I query how readily those who have been diagnosed with, or have children previously diagnosed with Aspergers will abandon the nomenclature. We have aspergers in our family, and I suspect it will be a good while before we do away with our ‘Aspergers support groups’. My teenage cousin has adopted the nickname of being an ‘Aspie’ as do many of his peer group, and I doubt the collective will quickly revert to calling themselves ‘mild auties’.

I am a 28 year old male. I have been diagnosed as having (Aspergers Syndrome). I do not believe that calling A.S. high functioning Autism or mild autism is a bad idea. I have many friends who have moderate to low functioning Autism. Our behaviors, emotions and thoughts may be similar, but our ability to interface with those around us and accomplish required daily living tasks do differ in levels of mental, emotional, and physical effort. I have a limited understanding of abstract spoken language, so massive amounts of mental effort is required to engage in superficial small talk, while at the same time attempting to keep my physical ticks at bay. That is easier for me, now that my brain has been “wired” to do so. Ether way, this is my life and I don’t know any different, just like any other person on the spectrum. Regardless of where someone low functioning or high functioning That is their life and they don’t know any different, regardless what one labels them. The average lay person knows what autism is, and dose not require further explanation, where as with the label Aspergers further explanation is required.

My 22 year old son (Asperger’s, & ADHD, – diagnosis from his childhood) once told me that he would rather just be autistic because the autistic children didn’t seem to be aware of the substandard education & treatment they were getting in his school. He, too, wanted to be oblivious of the fact that he had not learned anything in school since kindergarten; and, he believed that being unaware of the abuses from teachers & classmates would alleviate his depression, anxiety attacks, & suicidal thoughts. High school provided more physical & verbal abuse. At one IEP meeting, his special education teacher told me that she had know a child with Asperger’s; and, that wonderful child was the reason she became a special education teacher – however, my son was nothing like that child. I’m sure she did not intend to be devastatingly hurtful. I am sure the elementary school did not intentionally deny my son classroom instruction. It was just easier if he wasn’t in the class, so they let him hang out in the teacher’s break room. He would brew the coffee & entertain himself – until I found out! You may call the disorder anything you wish. Those who suffer from it remain individuals – and it is unacceptable to expect all children with Asperger’s or autism (or blue eyes) to behave & respond “just like” anyone else with the same “label”. The educational system in this country reflects our industrialized nature. We group “grades” based upon age, rarely abilities; and, you may be rejected if you fail to fall within the technical specifications. At 14, my son stopped attending school – the abuse had overwhelmed his ability to cope. At 13, prior to starting high school he was tested in every subject to determine his grade level for high school special education. The school authorities had informed me that he could not graduate high school with a college-prep diploma, because he was in special education. He had been placed into special education when his coffee-making career ended in 3rd grade.
The testing, however, could not indicate his proper grade placement. In each subject, the result was the same: > 12.9 grade level. His knowledge at 13, in every subject, exceeded the high school level. The school insisted that he could not bypass high school to attend college. The teacher laughed at me when I asked if there was any way that he could skip high school & start taking classes at the junior college. I pointed out that the instruction he required was beyond what was offered at the high school, according to their own testing. His teacher replied that he must attend high school to learn social skills. That’s when I knew it was not about helping my child reach his potential – it was about forcing him to sit at a desk for 4 years, without educational instruction, because the state provides funds to the county based solely upon the number of students enrolled.
He quit going after the first semester, and the school has never checked to see if he was truant or dead. He decided to enroll in college a few years later where he made friends and joined the honor society. It has been a long & difficult journey through the darkness. To parents, the term “mild” will be insulting. At the least, this ‘mild’ form of the disorder has a profound impact on the life of the child & the family.

As several parents of children with “high functioning Autism” or “Asperger’s”, there is nothing mild about this form of autism. My son’s intellect and sensitivity made him brutally aware of his differences and the contemptuous way he was treated by adults and peer bullies. He said to me when he was 6 “Mommy, I know I’m not normal. I try so hard all day at school to act normal because I don’t want them to know, but I know I’m not.”
The biggest threat we’ve faced is the co-morbidity of his awareness of Asperger’s with depression/anxiety and suicidal ideations. High functioning or mild autism is no assurance of greater emotional/mental health due to higher intellect and awareness…in my son’s case being aware enough to know you are different and “don’t fit in” led him to attempt suicide at 8 and is downright deadly. It’s crucial for the DSM to stress the increasing co-morbidity between Asperger’s and suicide.

the problem with asperger’s diagnosis and social skills is that had people resisted and not been afraid of what the crowd will say, many lives could have been saved in world war 2 and other human rights abuses. If social skills are extremely emphasized to the expense of right and wrong, more lives will be lost because people are afraid to speak out due to a mental disorder diagnosis. I applaud the ending of aspergers. Once people leave school, friends are not as important as they once were. I live in an apartment that markets to young working professionals and most people when they come home, they want to relax and be left alone. Also many people especially children wind up in abusive friendships because the message is it is better to have a friend than being alone. If this abusive person was a spouse, It would be considered domestic abuse.