Recently, air quote treatment of the label - autism - was given much attention in the popluar media. Must be election time! Actually, many who have been in the autism battle long enough understand how ill defined autism can be. The occasional disdain for any label should not serve to prove an intention of lack of respect for families in the stuggle. Below are some feelings with regard to the autism struggle and all of our best laid plans.
Autism, the label, does not go so far as to define or establish a definite medical cause for presentation of developmental deficits and behavioral excesses that are exhibited by those affected. The professional considerations about autism have incrementally developed a many times awkward zigzag between psychiatry and neurology. The term autism, is unfortunately utilized to represent a vast population; one that displays differing levels of intellect, ability and classic features. So much so as to make the general label somewhat moot; if a label in its best sense is intended to adequately inform.
It appears that the general label of autism is used by various media and some large special interests and / or non-profits to motivate actions and emotions in people - really wanting to suit a social or political agenda while limiting the autism discussion to that which suits special interests' ends. Families of children affected by autism are simply left with the resulting real life scraps from differing agendas. The families will live a lifetime with their loved ones needs - and most families eventually understand that there exists no simple absolute beyond trying things, observing outcome and then finally accepting what can and cannot be changed.
Autism, the label, seems to be seldom utilized (in popular media) in an effort to educate and inform in the broadest sense, with regard to the all encompassing and very complicated issues. It appears the autism label is many times utilized in order to incite emotion, actions, and an immediate rush to judgment or confused conclusion - all the while holding back with regard to presenting the entirety of information needed to make proper conclusion on the complicated issues. In truth, popular media shares great culpability when it comes to the idea of air quote autism. But then again, most people are satiated with a fifteen minute story that has a happy ending and the popular media recognizes this...Give the people what they want, right?
The fact that there are those who have a problem with the growing number of mandates, including mandates for the vast spectrum of autism, does not bother me at all. I myself have realized how overwhelmingly large the autism spectrum has become - and many professionals agree the label is being used with great excess, and psychiatric guidelines that have evolved over the years have contributed to the increase in children receiving the label. I also observe with concern as the most recent parent group of newly diagnosed autistic children might be taken for the ride of their life, by some prominent professionals - since these professionals have represented their emphasis in autism treatments and possible outcomes; emphasis without scientific validation.
As a mother of a seventeen year old severely autistic daughter, I find it interesting that popular media bias over a couple decades is to interview a family or two who has a toddler (or elementary school aged child) - about how much Applied Behavioral Analysis (Behavioral Modification) has improved their child's functioning - and is crucial to the overall development of every child who is affected by this vast thing called autism...In actuality, no long term studies have been completed that determine the affects of ABA type treatments - over an entire childhood into early adulthood. Additionally, there have been studies that indicate an affected child's autism onset patterns and initial IQ are the most determinant factors to offer prediction of overall lifelong outcome, and various interventions that are utilized have yet to offer any scientific prediction of lifelong outcome - all early interventions only offer a hope of better outcome.
..."There have been at least ten long-term follow-up studies of persons with ASD, going back nearly 40 years and totalling over 1000 subjects, that bear out this fact. In 1976, one researcher correctly concluded "In terms of scholastic progress, social competence, and work opportunities, the child's IQ level is as influential as the presence of autism."(Copeland Article)
Yet, is the current autism discussion reality one that is representative of our prominent autism experts theorizing and presenting their theory or hope - as fact? ABA is supported as an empirical methodolgy - even by heads of education. They say ABA is the most efficacious method for autism intervention, but this has not really been scientifically validated throughout childhood experience - into early adulthood. That being said, popular media has not endeavored to describe ABA type treatments in all of their glory. Nor have a preponderance of the autism experts tried to elucidate so that the popular media and newly engaged parents might grasp the complexity. ABA is not a set program, and group studies can only allow for degrees of meaningful interpretation as far as results.
ABA types of autism behavioral therapy are the vehicles utilized to insist upon autism intervention mandates. What exactly is ABA, if indeed, there exists no set formula or program that churns out a set result? ABA is an applied science of human behavior that must be uniquely applied for each autism affected individual. There is no set - or uniformly agreed upon procedure, practice or curriculum that defines ABA. (see comments here)
Many studies that have attempted to ascertain efficacy of autism interventions (coined as ABA or behavioal type) might be called into question. How many times have educational and psychological research endeavors into ABA been based upon the group research model, which de emphasizes individual differences in autism affected children - making an assumption that making conclusion based upon an overall group response average - provides a truthful or scientific result? It does not.
ABA in the truest form is intended to be the sole scientific study of an individual child - using that autism affected child's unique patterns of behavior as the lone scientific control. Studying the child and his or her responses to differing methods - in this way - results in a very unique prescription of intervention; comprised of a variety of approaches that are tailored according to the child's own efficacious response. The child's response to the differing procedures, practices and curriculum utilized and studied (for that child alone) are evaluated in a constant, ongoing fashion. This is a process that has been utilized for years within school districts; some have become quite a bit better at it than others. School districts already have a mandate to offer education to autism affected children, and usually teach them under individual education plans - when warranted.
Applied Behavior Analysis, in its truest form, is not intended to be part of group politics nor is it intended to be represented by group result. Even as many continue to try and make it so. The essential component to ABA in proper form and function, would be the continual, almost omnipresent attention of the child's expert - one who has an in depth understanding or view into the child's very psyche; one who has hands on experience and knowledge with regard to the multifacited interventions available. Even moreso the child's expert will need to be vigilant in determining possible medical concerns, when and if they arise.
So what of the aforementioned blur between psychiatry and neurology? How does the zigzag between the two disciplines factor in to the autism intervention discussion? Or relate to identification of the most efficacious interventions? As neurological findings for autism affected individuals begin to help us understand why affected individuals manifest the autistic features that they do - we might have little reason to interpret the exhibited behaviors (classic features) as strictly social, or done by conscious choice. The behaviors are not strictly a psychological concern of volition - that can be completely extinguished via behavioral therapy. We need to better understand that just because we prompt a child with the hands down - or quiet voice command during a discrete trial, it doesn't necessarily mean that compliance by the child is easily applied. It might mean that we are offering more stress to a child who may or may not be able to control the behavior - according to many factors that might present to do with situation and environment, and even time of year. Many things to do with situations, environment and time of year - can exacerbate already existing neurological conditions of medical origin.
When one considers the possibility that a child has not particularly chosen to engage in stimulatory behavior or some other autistic feature, it allows for the idea that some methods that have been utilized historically in various ABA type programs - do harm, of the psychological kind. For those with more complicated thought disorder, ABA might even contribute to behavioral problems due to the autistics' many times reported - atypical use of memory and thought; especially related to highly charged experiences (PTSD).
Imagine developing a strictly behavioral intervention for a child who has been labeled autistic, but who has as yet to be identified Bradykinesia (exhibits slowed ability to start and continue movements, and impaired ability to adjust the body's position link). The behavioral intervention will insist that the child move a little faster. When in fact, the child cannot, because he or she has slow movement from a medical condition that is the impetus behind the slow movement. The child has not received treatment or even empathy for that condition under the strictly social interpretation for the behavior. It is like telling a person with a broken leg to get up and walk - insisting repeatedly that they do so.
An unfortunate bias presents once a child is given a label of autism. Once the label autism is applied, a social interpretation of behavior is assumed and neurological interpretation usually denied.
From Rethinking Autism... Leary and Hill (1996) analyzed the literature on symptoms associated with established movement disorders and those associated with autism. The greatest difference among these disabilities was the interpretation of the symptoms. In Tourette syndrome, Parkinson's disorder and catatonia, there was a neurological interpretation of symptoms. A social rather than a neurological interpretation was applied if the person had a label of autism. That which is called a "tic" in a person with Tourette syndrome is most often assumed to be a 'behavior' (and often a conscious choice) in a person with autism.
So what of sensory and movement differences that are given important emphasis in Rethinking Autism; Implications of Sensory and Movement Differences; the differences are comprised of motor problems, sensory problems, inertia, apraxia, dyspraxia, echoalia, mutism, behavior disorder, catatonia and just plain clumsiness. These are all things that are observed in autism, but are also expressed in neurology as medical symptoms that require careful thought with regard to treatment. The neurologist might never say that the aforementioned listed physical symptoms are engaged upon by choice of the non autism affected patient...and might never insist that an intervention must be soley comprised of behavioral therapy in their case. On the other hand, a neurologist many times might ignore the symptoms if a patient seeking help has already received the autism label. Throughout my daughter's lifetime, and her experiences in the ebb and flow of autism over almost eighteen years - I have seen the dismissal of her symptoms due to her already present autism label; one she received at three years of age.
In relating to my daughter's thus far eighteen years I must insist that Anne M. Donnellan, David A. Hill, and Martha R. Leary have presented worthy food for thought in their Rethinking Autism; Implications of Sensory and Movement Differences. With regard to the autism affected individual's ability to relate and participate in social interactions.
A neurological view of symptoms possibly affecting autistic individuals will help us to understand further the nature of differences experienced by these individuals. While the psychological impact is very real as experienced first-hand by participants in such interactions, it is useful to suspend social interpretations of the symptoms so as not to mistakenly ascribe intent and volition to individuals whose behavior may be contrary to what really is intended to be communicated. (Rethinking Autism...)
Since sensory and movement differences are described in autism, but are also evidenced in many other disorders where neurological cause is acknowledged as a fact - we need to test the status quo thought processes which have lent preponderance to the research and teaching made popular, but not necessarily backed by anything beyond continuing theory that is presented as empirically supported. Additionally, if the sensory and movement features of autism are acknowledge to be from neurological cause, the features become an acknowledged medical concern that insurance will cover.
With regard to medical versus psychological: My daughter recieved an MRI at three years of age to rule out neurological issues as a cause of her autism symptoms; back in 1995. The scan appeared normal. She again recieved an MRI upon her worsening at ten years of age - but the doctor had to become convinced that her's was not strictly a concern of psychology or her choice to present as she did. A CAT scan was performed a couple years later because she has suffered a head injury prior to displaying symptoms that concerned the ER doctor. It was a medical concern to him, and from that the ER accidentally discovered that my daughter had a stroke. The better researchers become at finding the neurological discrepancies via diagnostics, the less we will all have to argue about.
I have been where the newly engaged parents are right now, fighting tooth and nail for my affected child's recovery. I have fought with the school district so that all might be trained in particular methods of intensive autism intervention strategies, simply because I had seen what was felt to be initial good response to the intense treatments. I have also experienced the pain of consequent worsening that remains a part of the ebb and flow of autism for many - no matter the initial endeavors of intervention. In reflecting upon my daughter's response to various treatments throughout the years I was able to identify that some of the ways in which our programming was applied of might have contributed to worsening thought disorder for her - simply because I insisted upon staying the course of interventions that initially worked and were emphasized as the only possible hope.
While behavioral treatments provide differing approaches that fulfill the goal of reaching a child, it is unlikely that these behavioral approaches iradicate the neurology behind a child's autism. The neurology will remain (running a different course for each affected individual) even if experts ignore the medical aspect. While it is important to keep trying, it is also very important to include wisdom in the autism argument. How wise is it to let autism get caught in a social or political agenda? How wise is it to allow the popular media to control the autism argument? No matter the result of these intrusions, families are left with the real life scraps - the truth behind all that is autism.
What remains, when all has been said and done thus far for our daughter, is the fact that she has understood life all along in sometimes vastly different terms. She is different, but she is worthy of the same grace that we all require on a day to day basis. Alongside our failure to normalize her by rewiring her brain via intensive therapies, we have understood the implications behind true humanity in its most extreme sense. I can only hope that families in general will be able to grasp the grace and display the extreme humanity many times required in the autism journey - when the various temporary hopes that are being presented to them right now by many experts might eventually be revealed as what they are...ideas and theories that have good intentions but do not quite pan out, once the scraps of reality begin to present in real life.
Has enough been done with regard to the whole truth about autism. Scores of professionals have seem to opt for pushing political and social agendas, that in the end will make little difference in overall outcome and are based on short term hope based on theory.
In the cases where insurance mandates do happen, I would hope to see coverage based upon what the public schools are not already able to adequately provide. Especially given the fact that schools have already had the mandate to provide autism intervention and education - and have recieved funding for such. There are parents who are happy with the education that their autism affected loved one is recieving via public schools. But, for some reason we don't hear very much about those instances. I am happy with my daughter's public school placement and she is now thriving...but I cannot attribute her betterment to one particular intervention. In the end it has been grace, space and time that has allowed her happiness. Implementing intensive therapies upon her is out of the question.