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Bye Bye Asperger’s Syndrome?

By John M. Grohol, Psy.D.

Is the diagnosis of Asperger’s Syndrome — a mild form of autism mostly diagnosed in boys — heading the way of the dodo bird? A new article in the New York Times suggests that the new revision …

17 Comments to
Bye Bye Asperger’s Syndrome?

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  1. As the father of a 20 year-old Asperger’s son, my initial response is that there’s nothing “mild” about challenges we face. Because Asperger’s manifests itself differently in every individual, we still don’t know if our son will be able to complete college, hold down a job in a normal setting, or even live independently. I realize that families struggling with more profoundly disabled children might say “we only wish we were thinking about those things,” but each location on the autism spectrum brings its own unique opportunities and challenges. It’s just my opinion, but I think designations of mild, moderate and severe don’t do justice to the unique nature of the various autism spectrum disorders, and suggests that Asperger’s is “the same, only less so.”

  2. 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?

  3. Hi

    A couple of months ago my 2 and have year old son was diagnosed with Asperger’s. I have now join a team that has been trained by a lady that has triplets with autism… My question is to all… if this is a chemical imbalance in their diets what do you feed them?… What can i give my son that is save and will help him clean his system?

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

  5. I agree with the article. I think that they should include the common labels that people use to identify such disorders so that people do not get even more confused as to what they themselves (or others) have and how to get help. I don’t see a lot of help for “mild autism”, but I do see a lot more when it comes to “Asperger’s Syndrome”. I also think that people today stereotype the word “autism” to mean what is now commonly known as classic autism. People may think: “I can talk. I don’t flap my hands and bang my head. I’m not autistic.” I think less people will get the help they need because of all the hype over the word “autism” and what people think it means. I think a label like Asperger’s may help ease people into getting help, as well as letting others know what help they may need.

  6. 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.”

  7. I agree with the comments that “mild” autism greatly misrepresents the challenges, impediments, and frustrations of people, like my 19-year old son, who have Asperger’s. Similarly, “high-functioning” is also a deceptive description of these people. High-functioning compared to classic autism, yes. But compared to neurotypical people of the same age, people with Asperger’s are not functioning highly whatsoever. Though brilliant, my son is unable to maintain even a community college courseload, even though his ACT test scores alone would get him into most any 4-year institution of his choosing. He is isolated (except for family), cannot manage his time well enough to keep a work or school schedule, has gastrointestinal and sleep disorders, is completely disorganized and his anxiety can be crippling. He may well be dependent well into adulthood–hardly high functioning. Lumping Asperger’s into ASD ignores the fact that Asperger’s can be distinguished from other autism disorders and a diagnosis of Asperger’s carries unique attributes which make a diagnosis possible. Certainly, there is a range of impairment among the Asperger’s population, but that doesn’t negate the value of the diagnosis.

  8. 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.

  9. Since 1989 I have worked with thousands of teens. Call it what you will — label at however you might choose — I would love to know what has caused the pronounced increase in young people with these characteristics.

    I have had more teens with Asperger-like attributes in the last four years than in the previous sixteen combined!

  10. 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’.

  11. “Indeed, there are thousands of children who carry both an ADHD diagnosis and an autism diagnosis — the two are not mutually exclusive (nor have they ever been).”

    The diagnosis of autism is exclusive of a diagnosis of ADHD.

    Diagnosis criteria for ADHD:

    http://www.turnertoys.com/ADHD/APA_diagCriteria.htm

    “E. The symptoms do not occur exclusively during the course of a pervasive developmental disorder, schizophrenia, or other psychotic disorder and are not better accounted for by another mental disorder (eg, mood disorder, anxiety disorder, dissociative disorder, or personality disorder).”

    Many people have the two diagnosis, but this is beucause the therapists don’t follow the DSM

  12. 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.

  13. The fact that persons with aspergers want to be called “autistic” because it’s more “popular” and known is NOT a reason to want to be included in the dsm 5 autism spectrum. Look, Aspergers is a unique condition with its own special traits, it is not autism. i suggest looking at You Tube video called “autism spectrum seems out of control” and “autism epidemic out of control” to see a mother’s perspective, the mom has a severely autistic son…by the way.

  14. 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.

  15. I doubt this will actually happen. Its very unlikely for them to just yank the Aspergers diagnosis from the DSM. It will create a public outcry.

  16. 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.

  17. I believe that classifying it as ‘high-functioning autism’ might have been a good thing for my daughter. The school system believed her meltdowns were an emotional disorder,even though a psychiatrist gave a written diagnosis of Asperger’s, so she was placed in a class with Emotionally Disturbed and sociopaths. This was not a setting to help her prosper!
    Imagine- a young lady who is bright, capable intellectually, and wants to be accepted, in a class full of delinquents, sociopaths and ED!

  18. 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.

  19. I was so upset when I first heard that the term “Asperger’s Disorder” would no longer be used in diagnostic criteria. Although those with Asperger’s are “on the spectrum,” there are huge differences. This is an important piece to read:
    http://www.huffingtonpost.com/2013/08/05/aspergers-autism-brain-differences_n_3707791.html?utm_hp_ref=mostpopular

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