What is "Real Autism?"
If a person can travel the world, lecture to thousands, write books, and earn a doctorate despite his social and communication difficulties - is he "really" autistic?
If a child was diagnosed with autism at age two, but at age six is "recovered" (meaning no longer diagnosable based on the usual tests and evaluations) - was that child "really" autistic in the first place?
The easy answer to the question is "if the child was diagnosed by an autism expert, based on appropriate tests and evaluations, then YES, that child is or was really autistic." But that answer doesn't begin to address the frustrations that come along with the extraordinary breadth and depth of our present "autism spectrum."
While one legitimately diagnosed individual may be working on his doctorate, living with his girlfriend, but having a tough time with social cues and sensory issues, another similarly diagnosed person may be non-verbal, self-injurious, and incontinent. What do these people have in common, outside of a diagnosis? Bottom line: not much. And these dissimilarities make it extraordinarily difficult for families living with autism to find common ground.
As one commenter put it:
When a parent of a child that doesn’t speak, or speaks minimally, that has absolutely no idea how to play with other children and is totally self-absorbed in his own world hears that a child has “recovered from autism”, that parent thinks to himself, that the “recovered” child was never really autistic and that the “recovered” child’s parent has no idea what real autism really is.In my opinion, the "autism spectrum" will, at some point in the future, become a series of distinct diagnoses. Those diagnoses will, I believe, include not only social/communication challenges but also very different and very specific physical and psychological issues - ranging from sensory challenges to gastrointestinal issues, seizure disorders, mood disorders, and more.
Until that time, though, it seems to me that we will have to simply accept the definitions of autism that are provided by the medical community. And we'll need to respect the reality that those diagnosed with autism may look very different from one another. It's only by respecting those diagnoses - at least for the time being - that we can have any hope of building a community that can work together for the greater good.
Comments
I believe that spectrum disorders are already “distinct diagnoses”.
Actually, while there are diagnoses on the autism spectrum, and Rett Syndrome and Fragile X are quite specific, the other diagnoses are extremely difficult to pinpoint.
PDD-NOS is a catchall diagnosis that can include people at both ends of the spectrum. And Asperger syndrome and “autism” are both defined in terms of behaviors and social/communications deficits, but are NOT defined relative to, for example, mood disorders; sensory issues; feeding and GI issues; etc. As a result, functional abilities and physical and psychological symptoms vary wildly.
In the best of all worlds, IMHO, researchers would select subjects who have more in common than “autism spectrum disorders” (and they rarely do unless they’re specifically researching those commonalities). I’m guessing we’ll finally wind up with diagnoses that describe sets of symptoms such that it’s possible to pinpoint appropriate treatment.
Lisa (autism guide)
We can call anything we want “autism.” There is no blood test for it so it is whatever “we” say it is.
One way to “get to the bottom” of what autism really is is to look at the Kanner cases. The Kanner cases included people like Temple Grandin who were quite impaired when small and grew up to have jobs and live, more or less, independently.
The problem now is that parents whose children would never (not ever) been called “autistic” in the past because they would have been called, “retarded” are now called autistic.
Usually people complain that the “spectrum” exploded in one “direction” adding the more and more obviously intelligent and perhaps in some ways less impaired people, but the spectrum also exploded to some degree in the other direction. So, many of the parents of “low functioning” kids who are so so ugly about vaccines and blah blah blah and how the “high functioning” ones are ruining it for our “low functioning” kids blah blah… like Lenny Schafer for instance… 20 years ago their kids would not have been given a label of autism, but just mental retardation.
Autism as a category was not added as a “flavor” of mental retardation. It was added because it was totally different from MR. The kids had these odd habits that tended to point to intelligence (like memorizing books, etc) that are not seen in MR. So they created this category that was for this fairly rare group, essentially very impaired kids who are not MR. For years after that there was a category that no one likes to talk about much. Mentally retarded with autistic features.
Soooo, kids like, perhaps Kristina Chew’s Charlie, had he been born 10 years earlier would have been given that label, and Kristina would have joined up with parents of MR kids to advocate for MR kids (some of whom had autistic features like her son).
One can argue that Temple Grandin and people like her who start out fairly impaired (non verbal or echolalic) but who sometimes end up being quite impressive in what they can do, and even make money at it, they are the true autistics.
Everyone else (like me and my kid, and kids who are mentally-retarded/autistic, like Lenny’s son, apparently) can get in line behind THEM and say, “me, too.”
It doesn’t go the other way, where the Lenny’s get to say, “my kid is the real autistic and Temple Grandin is not.” Which is basically what Lenny says.
This came out wrong…
Here’s the fixed version.
“The problem now is that parents whose children would never (not ever) been called “autistic” in the past because they would have been called, “retarded” now have children who are called autistic.”
I believe there is a margin for error. One has to consider some parents never go for medical testing and only have a label from the school. That is not ‘real’ autism although the child actually could have autism, but not medically diagnosed and even then, some parents forego the other medical tests that can rule out other disorders or causes. Some have said a doctor spent 20 minutes observing a child and diagnosed autism, with out performing any cognitive or developmental tests at all.
I think more importantly than respecting ones ‘label’- diagnosis is to acknowledge regardless of ‘what’ it medically is, there’s something there that deserves attention and intervention.
Speaking for myself, I did all those tests. I did a Peds GI doctor too and had tests performed most would never imagine. I can say I know what didn’t cause autism for my child. But at this point, I long decided they can just give me a call when the medical community has a little more to provide towards causes. Until that call comes, the causes for us hardly matters in compared to our days.
I do not believe that autism truly is based on level of severity as a child, and intelligent level once they’re an adult. That is misleading. Temple Grandin is a great hopeful person, however she often speaks of her difficulties due to having autism as an adult. Most with autism also do not have savant abilities. Temple Grandin is an example of interventions worked for her at a time when few choices were available. What her mother chose and what I as a mother chose may never work but for 20 other kids.
Mainly what people attribute autism to, is lack of verbal communication. Schools do this as well. As soon as a child, say for instance my child, gains verbal communication it is thought OMG a miracle the autism is gone! The fact is, all children with autism have the potential to progress and gain in development. Just because the gain, does not mean autism is gone. It means their life is getting a little bit better.
Ms Clark appears to be uncomfortable with the fact that many children diagnosed with autistic disorder also have intellectual deficits.
Her attitude is consistent with advocates of the neurodiversity movement who like to associate autism with historical geniuses and talents like Einstein but do not like to be associated with autistic persons with intellectual deficits or who are otherwise low functioning.
“Neurodiversity - where bigotry towards autistic persons with intellectual deficits is AOK!”
I think that better categorization within the autism spectrum would be appropriate. It is rather a weird feeling as a parent to go to a gathering of several hundred families with autistic children expecting fully to meet with folks and observe children like your own child, only to have the odd experience of having your child stared at because they are “sooo autistic” and you spend most of the day trying to figure out who are the autistic kids and who are the normal ones. On behalf of my son I would say he meets diagnostic criteria for autism hands down, no question. He also meets diagnostic criteria for MR because his average IQ is low, but there are some areas where he shines and can compete at age level and maybe occasionally even higher. So is he autistic, of course. Is he mentally retarded yes, but his teachers tell me that they find it difficult to think of him as mentally retarded because he shows such intelligence in some areas and has an uncanny knack for solving problems and manipulating people to achieve his goals. He is currently participating in a study at the NIH that is focused on trying to identify subsets within the spectrum of what we call autism today. So Ms. Clark would you say he is autistic or mentally retarded? I personally prefer to refer to him as autistic because the behavior that meets the average persons eye and the basis of his needs are autistic in nature. After all MR refers only to an IQ deficit and autism refers to the specific behaviours and abilities and inabilities of the child. It far more clearly defines my son and his specific deficits than the MR label does. So Ms. Clark, is it unfair for us as parents to have a preference for the “autism” label because it is more specific while at the same time recognizing the IQ deficits? By the way—he has been seen by several medical professionals as well as psychologist and they all hands down give him an autism diagnosis but no one has ever even suggested that he should have an MR diagnosis although technically I beleive he would qualify for it.
There is so much bigotry about that I wonder why I even try to explain to those whose minds are made up one way already.
Perhaps the best way to explain, is not to talk about autism at all.
For example take another neurological difference, epilepsy, (or the set of conditions called epilepsy for this thing we call for convenience “epilepsy” is as variable in its etiology and appearance as autism)
It can affect an individual in a number of ways, from scarcely visible absence siezures to the spectacularly visible grand mal.
I have yet to hear anyone say that ones IQ has anything to do with it, or that only people with an IQ under 70 can experience the real epilepsy.
Clearly however ones intellectual capacity, and indeed ones cultural and social status determines how one reacts to the experience and internalises or rejects it. Nobody so far as I know discounts the experience of highly literate epileptic racconteurs or dismisses that of those less capable of relating the experience to a broader world.
So for goodness sake, why not just realise that autism is one set of variables, and intellectual capacity or whatever it is (and experts continue to disagree) is another and not discount anybody. I certainly do not, and to set up a straw man that says that some convenient construct you can lable us with called “neurodiversity” does is the real bigotry
The best way is to understand that many people have very high IQ’s regardless of disability. Intelligent level tests also has flaws when it comes to those with disabilities. My son interprets things differently, so he always scores low 70’s however if asked differently, you’d get a correct answer.
The medical area has advanced. Many with MR and ADHD are now caled autism, because they didn’t have the criteria available to diagnose autism. Mental Retardation is based only on IQ level- not on behaviors. Memorizing books and movies is an obsessive behavior, not so much intelligence since it hardly serves a functional useful purpose. It only shows the child is a visual learner and generally memorizes things only of their restricted interests.Could be OCD?
The explosion happpened at a certain year, when schools started counting autism IEP’s, which was when IDEA added autism to their category. Regardless, the child would had had an IEP be it DD, MR or autism. The fact is the child/ children needed help and services.
I’ve learned that the IQ tests typically used with kids are language-based, and therefore may not be a good measure of the intelligence of children with autism (whose verbal skills are compromised). There are other tests (the TONI and Raven Matrices to name two) that seem to do a better job.
Still, though, I suspect that autistic people may score lower than typical people because, for example, they don’t have the same motivation to respond to the tester and “do well” that many others have… they may be accustomed to hearing a question worded in a different way, and lack the flexibility to respond when it’s worded differently… and so forth.
Does that mean that NO children with autism are MR? I suspect that some are, but that it’s a much smaller percentage than originally described.
Lisa (autism guide)
The problem is that “real autism” is as subjective as some of the diagnoses.
In the eyes of many parents, I’m not autistic because I’m now a graduate student; their interpretation seems to be that anyone who functions better than their child is “not really autistic.” But as far as I can tell, I’m just as “autistic” now as I was as a child (when my diagnoses included autism, MR, and mutism). Any changes are due to increases in (learned) adaptive behavior. I don’t have meltdowns over the same stuff, but I can’t tell any difference between the feelings and SIB after a meltdown over technical problems during a midterm exam last Thursday and the same thing when I was 4 years old.
Who’s right?
Thank you again for your wisdom and insight. You really do have a pulse for what topics are being discussed regarding this community.
No where does it state that Autism includes GI issues. That was introduced by a certain British doctor.
Alot of children suffer from GI issues and they are, and will never be labeled Autistic.
When our oldest was diagnosed Autistic, 15 years ago, she was diagnosed at first with Autistic-like behaviors. She was not given the official diagnosis of Autism until after the doctor was comfortable giving her the label of Autism.
Once you are Autistic, there is no losing the label…sorry, just doesn’t happen.
Once you are Autistic, there is no losing the label…sorry, just doesn’t happen.
Depending on who does the diagnosis. Social agencies hand out autism diagnoses to get services for clients, and it’s not unheard of for kids to lose their diagnoses as they mature out of certain behaviors. Jenny McCarthy boasts that Evan lost his label due to her bio-medical interventions, but Evan was diagnosed by a social work agency. The same miracle cure could be had by moving to a state with poor services for autistic children. But Jeanette you’re right - a true medical diagnosis is a different matter.
AutismNB, I agree - certainly different agencies/docs do diagnose differently, and I’ve heard cases of kids with several distinct diagnoses (ADHD, NVLD, OCD, for example) who later were re-diagnosed with Asperger syndrome (rightly or wrongly).
What concerns me is this: if autism is conceived of as “the disorder which encompasses all these delays/disabilities AND cannot be cured,” then are we giving up altogether on the idea that a person can overcome the challenges of autism?
Seems to me that there really, truly are people who were legitimately diagnosed with autism at a very young age, and then later were no longer diagnosable on the autism spectrum - whether through ABA, another therapy, or just as a result of maturation.
More importantly, though - it seems to me that by saying “people with REAL autism will always be diagnosable with autism” we’re saying “no treatment can possibly have a significant impact on autism, because if it does then the problem wasn’t autism in the first place!”
Lisa (autism guide)
Labels change, even with kids with autism, as did my own kids. When he was younger he was severe autism, now he more fits aspergers however he was non verbal so we know he’s truly autism. A better statement would be once you’re autistic you always are, however one may not always fit the full criteria for the label and this happens all the time. People need the criteria to fit the label, and many as they progress only then fit some of that criteria but not all. Generally speaking those who do progress, like my own child, still has many autism issues in some main area’s, but in other area’s he doesn’t. For those who claim autism is completed a past tense thing I would agree there was a misdiagnosis or the child just hasn’t hit the situation yet where their difficulty can be seen clearly enough.
“the disorder which encompasses all these delays/disabilities AND cannot be cured,” then are we giving up altogether on the idea that a person can overcome the challenges of autism?” For starters, we all know today, there is no cure. If there was, we’d all be doing what ever it is to get that cure and we’d all see the same results. I don’t think ‘overcome’ is a good word, or a correct concept. One then is assuming a child can not at all progress, but they can. “Coping skills” may be better. I imagine my kid for his whole life will be able to hold it together for a certain amount of time (which then leads to irritable bowel syndrome) but then once home, he looses it and lets it all out (that would include the IBS and behaviors). He has learned not to mouth things and smell so many things, not to body slam to get his sensory input, not to repeat phrases if he can help it until he get’s home….. it’s more about coping skills than it is a cure to be hopeful for. Allow the child their need for doing things, but doing it at a more appropriate time or place. Kids can learn what to seek more appropriately to seek their input than to body slam to the floor, or learn how to repeat in their head than out loud. This doesn’t come from a cure, it comes from teaching and offering choices.
Lisa,
I cannot speak for others, but can say what we have witnessed in our family.
We have 5 who have been diagnosed with Autism. 2 are still severely affected, 1 has Asperger’s and 2 have gone from severely affected to non-distinguishable from their peers.
They all have improved over the past few years with Speech Therapy, Play Therapy, Occuptional Therapy, Recreational Therapy, and Massage Therapy. Oh, and a diet full of gluten and casein.
Our most severely affected has never had an MMR shot (as Jenny calls the Autism shot).
So, to say to remove casein and wheat will cure your child is beyond ridiculous. The diet will alleviate symptoms of gastrointestinal problems…which is not Autism.
I totally get why Autism is getting a bad rap, because the rantings of Jenny McCarthy is making Autism a totally different definition than what it should be.
We got our first computer when our oldest was 7 years old. I google Autism and also saw “Autism is Reversible”. I read the content and never went back…
I was raised in Texas..we know BS when we smell it.
And that is why is is autism SPECTRUM disorder. Not one of our kiddos is alike.