Autism is a "spectrum disorder," which means, in essence, that one can be mildly autistic, severely autistic, or anything in between. And since the core symptoms of autism include communication and social challenges, that means a person with autism can be nonverbal and apparently unaware of other people altogether, or, at the other extreme, hyper-verbal and painfully aware of other people and their judgements.
But there's more to it.
People with autism spectrum disorders may have any combination of many different symptoms - or none of the symptoms at all. For example, a person with autism may have a seizure disorder, difficulty sleeping, gastrointestinal problems, hyper or hypo sensitivity to light, sound and smell. A person with autism may have learning disabilities, self-injurious or aggressive behaviors, self-stimulatory behaviors or anxiety issues.
In addition, people with autism may have surprising abilities - and, again, they may have many, some, or none of these special talents. For example, a person with autism may be a "savant" - wildly capable in one very specialized area such as math, music, linguistics or computer programming. She may be "hyperlexic" - able to read at an advanced level at a very young age. He may have perfect pitch, amazing visual memory, extraordinary mechanical skills or an impressive ability to notice and record detail. Or, then again, he or she may not have any of these special skills.
So how do we parse out the flavors of autism? We know there are "autisms," but how are they defined? Which qualities do we select to describe individual syndromes or styles of autism?
Do we go with the medical issues, defining autism in terms of physical symptoms or lack thereof? In that case, a person with high IQ and strong verbal abilities might be lumped together with a person with no verbal abilities and low IQ - based on the fact that both have sleep and seizure disorders.
Do we focus on capabilities, looking exclusively at challenges and abilities in certain areas? In that case, we might group together people with musical ability, or math ability, or lack of spoken language - regardless of other symptoms or lack of symptoms.
Would we do better to describe autism in terms of IQ, EQ, or some other measurement system? Or in terms of verbal competence? In that case, individuals with low IQ might be grouped together regardless of physical symptoms, adaptive abilities or behaviors.
Or should we consider social and life skills, focusing more on the ability to manage a typical school or work setting than on a predetermined set of norms. In that case, a person with low verbal abilities but few behavioral or sensory issues might find himself in a "higher" group than an individual with strong verbal skills and high IQ who is struggling with anxiety, depression or other issues.
So far, we've made little progress in determining what the "flavors" of autism really look like. In fact, outside of Fragile X and Rett Syndrome, we have named only Asperger Syndrome - and it looks like even Aspergers may disappear in the next iteration of the diagnostic manual (DSM).
If you were in charge, how would you determine the "flavors" of autism? And what system would you use to determine who fit in which category?
Though controversial, I would rather do away with the “spectrum” and designate “autism” as the Kanner’s/Classic expression until we have better etiological standards.
This would move the PDD-NOS, AS, HFA, and others to their own category. I’d likely split these, as well.
To be blunt, classic autism requires far more support and is generally — and only generally — more demanding than many of the “autisms” I have witnessed among college students and professors. This is in no way meant to minimize the experiences of people like myself. The issues are as important as those facing classic autism.
My diagnosis included “elements of classic autism” but it would be absurd to compare my existence to that of someone facing adulthood in an institution.
We need to build bridges of cooperation, but that also means we have to recognize AS is not (at least in my view) HFA which is not Classic Autism. Those focused on AS have said I’m “more autistic” while families of individuals with classic autism say I’m “one of those Aspies.”
It’s absurd. I’m definitely not “classic” no matter what diagnosticians write in an eval. I don’t know if my life is better, but it is different. The health sciences should recognize that.
Just my view. I know as a “spectrum” there are more of us, but I’m not finding “strength in numbers.” Instead, I think the spectrum is leading to division and hostility.
I can’t even pretend to be able to answer that one… I’m sure some people feel they are more of an ‘expert’ than someone else might be but the truth be told, so long as so much is a mystery, no one will truly ever be a real expert.
However, that being said, I think it would help matters if they started breaking it up into smaller pieces rather than continue to clump all groupings into one mega group.
It would be far easier for some people to go see an Aspergers specialist and leave the ’severe Autism’ people to the ’severe Autism’ specialist. Less for them to learn, less for us to learn, a more defined set of treatments and expectations.
I’m sure breaking up all of Autism into several smaller groups is easier said than done but at least it would provide greater focus and less overwhelming confusion.
One example is the Autism community. I can’t say “be proud of your Autism” to the Aspergers people without offending those with children on the severe end, and I can’t say “Autism is terrible” to those people without offending those with Aspergers.
Further separation would help those groups (and all the people in between) feel better about those saying what they want to hear and still feel alright about those saying the opposite to the people on the opposite end of the scale.
“Autism is a “spectrum disorder,” which means, in essence, that one can be mildly autistic, severely autistic, or anything in between. And since the core symptoms of autism include communication and social challenges, that means a person with autism can be nonverbal and apparently unaware of other people altogether, or, at the other extreme, hyper-verbal and painfully aware of other people and their judgements.”
and that’s why the latter group typically is described in the media as having “a mild form of autism”…
Couldn’t have said it any better than C.S. Wyatt.
My son had classic Autism. AT 3 he had Zero social/emotional skills and zero verbal skills and Zero sounds. However, he seemed intelligent. After using Floortime intevention at home, we were able to move him to a high emotional level of hugging, loving and laughing with a sense of humor. We were able to get him using verbal language, not sign language. He now has an imagination.
But the interesting part of all this now, is that he is 5 1/2 years old, does not appear to have a severe form of Autism. He is high functioning, but experts know he has autism.
So now, Does he have Classic Autism, PDD-NOS, Asperger’s? What bucket do you put him in for medical services? To me, he is still classic Autism, to other people, maybe not so much.
I am endowed with Asperger’s.
The first distinction I would make is whether we are dealing with a form of inherited essential autism, or dealing with an individual with widespread brain damage (fetal alcohol syndrome for example). The interventions required and expected outcome between the two groups are so different they should never be lumped together. The brain damage group is often easy to spot; ears twisted back, odd looking faces, bad eyesight or hearing. Let’s be honest; we are talking about the people who before the era of political correctness we would have looked at and said “He looks retarded”.
The next commonly used identifier, verbal or not verbal, I suspect is being over used. I have seen “non-verbals” who eventually became hyperverbal Aspies.
In my opinion, intelligence has got to one of the top identifiers, for it has a drastic effect on outcome and success, and we have (correctly) reserved Asperger’s syndrome for the more intelligent among us.
But is is so true there is a host of co-morbidities. I, for instance, have a nervous system so “high strung” that if someone says “boo”, I collapse into a fetal position with either shattered teeth or my tongue bitten, broken ribs from inhaling like someone with whooping cough, tendons ripped from the bone, especially in the fingertips, both thumbs broken by the contraction, and I may pick up an additional broken bone from the uncontrolled fall. As awful as this sounds, it happens to me routinely; I have just learned to live with one or both thumbs nearly always broken. (My least autistic, possibly ADHD son also inherited this malady.)
If I was starting from scratch, the categories I would use are:
Profound Autism – classic Kanner autism with low intelligence and severe social disconnect.
Disabling Autism – less severe than profound, but with no expectation of seamlessly integrating with society; might succeed in a sheltered workshop.
Disabling Asperger’s – Able to integrate with society, but never seamlessly; some tolerance and accommodation would be necessary.
Pragmatic Asperger’s – Able to integrate with society so well it is difficult to tell they are on the autism spectrum.
While I would like to think I fall in the Pragmatic Asperger’s category because I feel I am so successful at pretending to be normal, my startle disease is so obvious that accommodations have to be made, forcing me into the disabled Aspie category. One of my sons fits well into the Pragmatic Aspie category, as do a couple of my brothers. Another of my sons and two of my brothers would fall in the disabled Aspie category. I don’t know where to put my ADHD son with startle problems but no social deficits, but it’s not a perfect system.
So far, we’ve made little progress in determining what the “flavors” of autism really look like. In fact, outside of Fragile X and Rett Syndrome, we have named only Asperger Syndrome…
Why not “autistic disorder” and CID?
what does CID stand for?
While you are at it, why don’t you ask what you would call the “flavor” of cancer, stroke, heart attack, crohn’s disease, or diabetes?
Or maybe the “flavor” of intellectual disability, downs syndrome, learning disabilities, adhd, depression, bipolar, or schizophrenia?
If someone asked you what you would call the “flavors” of any of these conditions, how would you react?
Yes, I would like a dose of candy flavored lung cancer with a side of bright red pain.
There are no “flavors” of autism, only varying degrees of disability. If you want to pick “flavors”, try an ice cream store.
Wow, MJ – I’m impressed that you can take offense at such an obviously inoffensive metaphor. Sorry I’m not grim enough for your preference.
Well, either it wasn’t “obviously inoffensive” or I am just easily offended, take your pick.
You seem to think that calling a disability a “flavor” and asking people to pick their favorite form isn’t offensive to those who struggle with it. But then again, you seem to think that autism is a positive thing too, so I guess I should not be surprised.
My child was hitting herself earlier because she has autism and can’t control herself, and you think talking about the same disability as “flavors” is appropriate? Should I start naming the bruises that she gave herself too? Perhaps after the piece of fruit that they look like?
Or maybe I should look at the bright side, after pounding the crap out of herself for a few years, she will be well trained for a career as a professional boxer.
So you tell me, should I be offended that you think the word “flavor” is an appropriate metaphor for a condition that involves self injurious behavior?
“If someone asked you what you would call the “flavors” of any of these conditions, how would you react? ”
Possibly by asking them to clarify what they meant by ‘flavours’ first. Lisa Jo went on the explain the use of ‘flavors’ in the opening post.
Then, I’d possibly have a discussion similar to that which occured.
So, basically, because you (and it appears only you) became offended, the rest of us must shut up and never use any form of metaphor.
You will note that I wrote that as a statment. You will not be able to answer it as a question, so therefore I didn’t waste time by asking.
You will substantiate your accusations by quoting the exact line that led you to believe Liza Jo was asking us to ‘pick our favorite flavor’. It doesn’t appear to be findable through ctrl-f or a eyeball search. Indeed, none of the opening post remotely matches your description of it.
So, pony up the exact words that informed your view.
I will repeat the question until you give a direct answer.
Dedj,
This never ends well when you try this maneuver. But as much fun as it is to go around and around with you and explain what the word “opinion” means yet again, my “flavors” of autism have given me a rough couple of weeks and I am not really in the mood to play word games with you yet once again.
If it makes you feel better, you can skip straight to the part where you start calling me names and telling me that I have problems with reading comprehension and have ruined my reputation before the world.
But since I already said it, maybe you can give it a rest already?
Thank you.
I definitely missed any metaphor.
In science, the “flavor” of a particle is any of six qualities associated with a particle, most often used to describe “quarks” and charged particles.
As a writer, I often discuss the “flavor” of a scene in fiction. It simply means the “category” of scene so a director, designer, et al, can create the right mood, time period, and so on. “Stage with a gothic flavor” certainly doesn’t mean Ben & Jerry are creating new “gothic grape” ice cream.
Granted, I don’t get most metaphors, but to care so much about them is fascinating. The world has enough negativity without me searching for more.
“This never ends well when you try this maneuver.”
True, no matter how many times I, or many other people, try to get a straight answer from you, we never get one.
Again, you will quote the exact piece of text where Lisa Jo asked us to pick our ‘favorite flavor’. As far as I can tell, you have utterly misrepresented the opening post yet again.
You have never succeeded in giving me, ANB, Kev Leitch, KWombles, Astrid or any other person a straight or honest answer to any of the times your report of what a person has said has been so severely departed from what they actually said.
Then you stand around in amazement wondering why people think you have difficulties.
I expect a direct answer by the end of the week.
By the way, if you can voice your anger at people for what they say, then other people are entitled to do the same to you. Sorry, but you set those rules when you came charging into the thread.
Nice attempt at a dodge though. Shame you’ve pulled that trick before.
See you later!
Much as I appreciate the support from commenters (thanks, Dedj), there’s really only one rule on this blog – and that is, no personal attacks/flames.
Clearly you (Dedj and MJ) have a long-standing relationship that goes far beyond this blog post. While I respect your differences, I’d ask that you frame your comments so that I’m not hosting a confrontation.
Thanks,
Lisa
Actually, there is no long standing relationship that I am aware of other than he seems to feel the need to challenge everything I say and attack me where ever he sees me comment.
I will ignore his comments and not respond to him here in the future, sorry for creating a ruckus.
Dedj, if you really want to continue the discussion, click on the link on my name and feel free to flame me to your heart’s content.
Dedj thinks like a scientist, and assumes it’s fitting and proper, even on just a blog, to challenge dodgy or dishonest comments. There’s nothing personal about that. If MJ doesn’t like to be corrected, then she should restrict her posts to AoA, or another site that restricts comments to like-minded anti-vaccine activists.
Lisa, CID stands for childhood integrative disorder. It’s one of five PDDs under the ASD umbrella.
I’ve also seen CID written as childhood disintegrative disorder (CDD), but the DSM (Diagnostic and Statistical Manual) designation is CID.
I’m still not sure what you mean that only three “types” of autism have been “named”. If you go by the DSM-IV, instead of the about.com link you posted, there are five PDDs that fall under the ASD umbrella. They all have names:
Aspergers
Autistic disorder
PDD-NOS
CID
Retts
You could say these names are too subjective, but then we’re back to the social construct argument, and Harold, and closing down comments. ; -)
Lisa, are you going to enforce your comment policy or am I free to defend myself here?
ANB,If I may, in a gentle call for peace;
if someone wishes to get credit for a scientific approach, it might be wise to couch disagreements in purely scientific terms;
ie “just the facts, Ma’am.”.If what one states could not be written in a scholarly paper as a factual criticism, then one is no longer taking a scientific approach, and the criticism being given is no more “scientific” than anyone elses.. and it helps to remember, at least for me, that anyone on this board may be dealing on any particular day with a great deal of stress.
Disagreements about causes aside, most of us are raising children with sometimes multiple disabilities and challenges.If we can’t all understand that about each other , who else can?
MJ ,I also used the term “flavors’ in reference to autism; I certainly did not mean to in any way not acknowledge the very real challenges and difficulties of autism, ( I was using it to point out the huge variety in experiences of autism, ranging from non verbal to high functioning apsergers)and I am sure Lisa also used it innocently.
Did want to say I am really sorry you are having a hard time right now; rmember how difficult it was when my child was self abusing. Horrifying,and as a parent one feels so helpless. Thinking of you and hoping things go better for you and your child,Hera
ANB: you’re right, and I’m wrong – there are additional “named” forms of autism, and I haven’t written about or even learned much about CID. That’s a hole in my site, and I will work to remedy that shortly.
MJ, I completely understand your frustration.
Bottom line: MJ is right that he’s yet again under personal attack. As you know, that’s not acceptable on this blog.
I don’t want to censor any comments – so I am going to just end comments on this thread. Please, all, feel free to come back to the site with your thoughts on future blog posts.
Lisa