Autism Controversies Fueled by the "Spectrum?" Share Your Opinion
The autism spectrum, in fact, runs the gamut from people with multiple and profound disabilities to those with mild and manageable differences. It includes those with severe physical problems (including gastrointestinal disorders, seizure disorders, sleep disorders, and more) as well as those who have no physical issues at all. It includes people who are so sensitive to sensory input that they cannot be in a room with fluorescent lights - and those for whom fireworks and crowds are just white noise.
With such disparity among people with autism, it has never surprised me that parents of autistic people and adults on the spectrum disagree about the impact of autism on their lives. Read some blogs, and you'll meet parents of children who are, quite literally, suffering every day (along with their families and loved ones). Read other blogs, and you'll meet proud parents of high-achieving children who just happen to be diagnosable on the autism spectrum - along with many successful adults whose autism diagnoses have become just one aspect of their self-concept.
These vast differences seem to me to be a problem - not only within the autism community, where passionate advocates clash, but in the research community. How can researchers study "autism" when the groups they study are so radically diverse? How can researchers zero in on genetic, educational, biomedical or other treatments for autism when they are working with people whose symptoms have almost nothing in common?
Often, though, I find that my opinions - which seem so reasonable in my own mind - are not shared by others. Is this a case in point? Do you feel that the autism spectrum is too broad? Would you support the idea of breaking the spectrum into separate disorders? Or do you feel that the "autism spectrum," as it's presently understood, makes good sense?
Let me know your thoughts!
Comments
I think it’s nearly impossible to shorten this gap without there being a genetic or medical test for autism. The diagnosis is based on some ones interpretation of behaviors, and until there’s another way found to determine autism, it’s just going to be a broad spectrum.
In the early 80s there was no such thing as an autism spectrum - there was only autism. Since then, the DSM has been revised three times to include spectrum disorders. Asking if the spectrum is too broad is like asking if there are too many kinds of trees.
Proponents of the “autism epidemic” hypothesis conflate the terms “autism” and “autism spectrum disorders”. David Kirby and other vaccine rejectionists claim that it’s impossible to miss 70 year old autistics because they would be spinning and flapping on their way to the shuffleboard courts. But he makes the mistake, deliberately I suspect, of confusing “autism” with “autism spectrum disorders”. He makes lots of other mistakes too, but I couldn’t possibly cover them all here.
I believe that for people at either end of the spectrum, it is too broad an expanse to be of any use as an umbrella definition.
I think that the defition is too broad to do meaningful research or to have caregiver-strategy discussions for the very reasons you stated. The challenges faced by some are a pittance when compared to others who are way on the other side of the spectrum. However, one important benefit to the large grouping is that more attention can be given to this “family of disorders.” Kind of like cancer is a family of illnesses, some are relatively benign and some will ravage the physical body within a few months.
I think research needs to be done taking into account which subset of the disorder is being studied. Or, if subjects from a broad range of the disorders are included, their level of severity needs to be factored into the analysis. This of course, becomes complicated and I agree with the 1st poster (Sandy) that the diagnosis is currently very subjective.
AutismNewsBeat says “Asking if the spectrum is too broad is like asking if there are too many kinds of trees.”
Seems to me it’s more like lumping together trees, bushes, woody vines and mangroves and calling them all a part of the “woody plant” spectrum.
Clearly, they all have something in common: they are, in fact, woody plants. But because they are also so very different from one another in so many ways, it’s extremely useful to provide each species with its own name, describe its individual qualities and needs, and so forth.
After all, if you provide a rose bush with the same environment and care as a mangrove, you’re going to get pretty crummy results… even though they’re both woody plants!
Lisa (autism guide)
The term Autism spectrum disorder is like the term cancer. One person’s life on the spectrum is not like another’s just like one person with skin cancer does not have the same experience as a person with ovarian cancer. Unlike cancer the subgroups of ASD are not as easily defined as those catergories of cancer,with time and research though the subgroups of ASD will be more exact. 50 years ago the subgroups of cancer were just as ill defined as ASD.
Two indisputable facts in the swirling controversy are that the spectrum of autism is vast, and the impact of autism on each person is different. The term “spectrum” indicates the uneven manifestation of abilities and disabilities in the areas of communication, social interaction, obsessive and stereotypical behaviors, sensory issues, and physical issues. Because behaviors are exhibited in any combination and in any degree of severity, it is difficult - if not impossible - to talk about functioning levels in autism as “low and high” or “low and lower” or any other well-defined, systematic classifications. And it is impossible to pinpoint ONE cause, cure, therapy, approach, impact, or expectation.
In my humble opinion, each individual with autism I know is, indeed, unique. So unique, in fact, that each requires his or her very own category in the vast spectrum of autism. We certainly approach therapy from the point of view of individual differences and needs. Sometimes parents and teachers and I use terms like “Sally’s autism” and “Harold’s autism” so we can communicate more clearly and all be on the same page about specific strategies or aspects of behavior.
But, amongst all the disparities, there are commonalities across the board. So autism need not be chopped up and thrown in the fire. As research and time unwrap the mysteries of autism spectrum disorders, some of the controversies will fade away. We have two choices: (1) We can spend all our time and energy trying to develop clear-cut classifications of the thousands of different manifestations of autism (then try to stuff every person we know with autism into one of those specific, well-defined categories), or (2) We can ALL accept the fact that every person is, indeed, unique, and that, in light of those disparities, turf battles and generalizations are counter-productive. I vote for Option 2 so we can get about the business of helping each individual with autism enhance his or her own strengths and compensate for weaknesses in an effort to maximize each individual’s potential and enhance their quality of life.
Cathy Knoll
http://FAQautism.com
You said:
“Read some blogs, and you’ll meet parents of children who are, quite literally, suffering every day (along with their families and loved ones). Read other blogs, and you’ll meet proud parents of high-achieving children who just happen to be diagnosable on the autism spectrum…”
I think this dichotomy is too narrow a way to present the situation. Specifically, your choice of words here implies that “proud parents” are exclusive to the “high achieving children”. In my experience, proud and happy parents are to be found amongst all “levels” of severity of autism.
Regardless of the vast spectrum, autism is suppose to be debilitating to a certain extent to the person who has it in certain area’s. I know some kids who have multiple diagnosis and maybe it’s that combination that makes it so debilitating for the child but maybe without one other diagnosis, maybe the autism wouldn’t be all that severe.
Also, as I read the sentence concerning the blogs, it’s not so narrow-minded. Many but not all parents of those with severe autism have little time to find anything to be proud of. I can say I have been on both ends, severe autism when my child was younger and there was not much to be proud of or happy about. I was just too darn tired. As he became older and worked very hard to be where he is today, sure, I finally found that pride. Autism brings you to many different stages and that is one of them.
“Spectrum” is too broad? Try “typical” (or “normal”). In one way, ain’t no such any-thing. In another: well, yes of course there is and we need to manage/modify/arrange accordingly.
We don’t need a continumm of who-suffers-most because that’s to some extent subjective. What I find tolerable in my Asperger (co-morbid ADHD, anxiety disordered) son may be be intolerable to another, differently-abled parent. Or to his teachers or fellow students. Or to his employer, or his neighbors.
We all suffer as parents to watch children we love be hurt and marginalized in a world that demands skills or behavior which they may never–yes, NEVER–be able to achieve. So its not just finding the “causes” and treating the “symptoms” but dealing with the reality of a world that does not accept and in many ways will not tolerate our children.
What makes it even harder to separate people from different ends of the spectrum is that when kids are diagnosed with autism as toddlers, they may display severe symptoms, but in a few years they’ll develop into Asperger’s or HFA, while others will remain highly affected. I’m comfortable with the wide spectrum because we can always find things in common on people with different degrees of autism.
One tends to forget that the DSM is nothing more that an manual for the express perposes of Medical Insurence Industry and inparticular the U.S. Sad to say that it has become much more than that as if it were some knind encyclopaedia. The Neroutic inlneses have disappeared alll together, yet they reamin in the IDC - 10.
The DSM also lists Schizophrenia as a difernmtial Diagnosis for Autism but does not mention autism as a differential diagnosis for Schizophrenia.
A reading of the IDC-10 is a far better option and brings a much less comercial out look to a diagnosis.
I thing DSM sands for Dirty Smelly Medicine.
One tends to forget that the DSM is nothing more that an manual for the express perposes of Medical Insurence Industry and inparticular the U.S. Sad to say that it has become much more than that as if it were some knind encyclopaedia. The Neroutic inlneses have disappeared alll together, yet they reamin in the IDC - 10.
Us adult non Aspergerś Syndrome people rarely ever get a mention, autistic children grow up to be autistic adults
The DSM also lists Schizophrenia as a difernmtial Diagnosis for Autism but does not mention autism as a differential diagnosis for Schizophrenia.
A reading of the IDC-10 is a far better option and brings a much less comercial out look to a diagnosis.
I thing DSM sands for Dirty Smelly Medicine.
Putting aside the fact that the cause of Autism has not been found and my thoughts that the medical community has not compiled the data to get close in understanding the cause, the umbrella appoch is identicle. Why don’t they know those that have been diagnosed with Autism? Why don’t they know the progress of those diagnosed along with records of their symptoms? ( speach, motor skills, test for metals, etc.] Why don’t they know how individual families are dealing with Autism? [ Special schooling, medically, etc.] and keeping track of the results. I know this is a Big Task but the number of those children diagnosed requires it.
I agree with Cathy Knoll, and believe that every person’s autism does need the overall umbrella term.
Even HFA have ‘low functioning’ days/moments and vice versa.
To me, it’s about a term for the way the ASD brain processes our NT world.