Fabricated Echolalia: An Autism Perspective
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{illustrative} Clip Art
The story of Autistic Spectrum Disorder (ASD) can be disorientating and strenuous in a society where the rapid rates of diagnosis have sky rocketed in the last ten years alone. Currently the U.S. Centers for Disease Control “…estimates that about 1 in 68 children has been identified with autism spectrum disorder (ASD).”[1] (Please consider these are based on studies conducted in 2010) This neurological disorder is unbiased to “…racial, ethnic, and socioeconomic groups, but is almost five times more common among boys than among girls”[2]
For the reader unfamiliar with ASD, here is a more unique breakdown of Autism. “…autism spectrum disorder (ASD) is driven by ‘Autism Plus’. Autism Plus refers to autism with comorbidities (including intellectual developmental disorder, language disorder, and attention-deficit/hyperactivity disorder), and this is what is now being diagnosed by clinicians as ASD.”[3]
The key here is of these comorbidities, or the additional disorders.. Where these disabilities can be diagnosed separately without autism necessarily being the driving factor. As an example, Attention Deficit Disorder can diagnosed without a child being autistic. “Autism affects more male than female individuals, and comorbidity is common (>70% have concurrent conditions).”[4]
As a parent of an ASD child, I have heard the validated argument that Autism Spectrum Disorder is simply overly diagnosed. However, I would argue that even if autism is being overly diagnosed, the underlining conditions (such as a language disorder, intellectual developmental disorder, etc.) are more of the concern.
Specifically because these underlining conditions are the reason for the parental red flags resulting in a doctor's appointment. (i.e. Timmy cannot verbalize pain, he only points occasionally to objects. Or Annie won't make eye contact or play with other children.) The timing of these observations (red flags) also have an impact.
From older readings, It became clear that both autism and autism spectrum disorder are blanket terms but are the same. Varying in the past ONLY by when the child was officially diagnosed. As an example, a child over the age of 3 was termed ASD. While a child diagnosed before the age of 3 was termed autistic. (Old school medically journal observations here) But in all seriousness, ASD and Autism are the same with only varied conditions.
Also to address a recent change to the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders 5th edition-2012), which directly effects the Asperger classification. In 2012, the DSM was updated compiling autism and Asperger disorder together under the identifying label of "Autism Spectrum Disorder". This is both a generalization and a removal of sensitivity to the disorders. (In my humble, non-PhD opinion) "Merging Asperger disorder (and PDD-NOS) into autism spectrum disorder results in loss of identity and ignores uniqueness of Asperger dx." Arguably I should suggest this is also why the diagnosis of autism has significantly risen with this change in diagnostic language, but again without a complete picture of these findings it is merely an educated guess.
But for now, allow me to set aside these statistics and medical entries to the the meat of the topic.
{illustrative} yale news, © 2015, Yale University
As the reader, I am sure you know of someone who loves attention. Negative or positive, it is still attention. There is an addiction to “showboating”. Well, when a child is diagnosed with ASD (or any disability) there is a supportive flood of friends, family, strangers, therapists, administrators and/or organizations who are made available to you. You can post “Autism Awareness” images all over social media, tweet motivational quotes with hash-tags (i.e.- #ourchildrenareprecious #yourchild'snamehere), gain sympathy/empathy in many avenues merely by the comment that your child is autistic. Without argument, I avoid posting much of this at all. Not because I am ashamed of my special needs child, but because I am too damn overwhelmed with helping my child to spend my free time blasting bullshit all over social media.
Being the parent of an autistic child it can be both a blessing and a curse. The blessing is how much I adore my son and that deep seeded ambition I have as a mother to pillage the enemy without remorse. (It's a good time.) The curse, well we will address that shortly. I am closely active in my son’s school and therapies. However, there is always a part of me that feels inadequate and incapable. (But this could be applied to any interactive parent, right?)
I love our supporters, but I can still feel isolated at times. I am constantly hearing comments such as, “Well, he looks so normal.”, “But he is so cute!” It takes everything within me not to scream “DID YOU EXPECT HORNS AND A TAIL?”
At other times, I hear comments about his erratic behavior or anti-social traits. My son lacks social qualms such as saying goodbye to a friend or recognizing when he hurts someone's feelings. My son has few close friends, with a detachment policy that causes hurt feelings unintentionally. I have dried more than a few tears and put out more than a few social fires. My brain sighs with relief when I can help curb the rougher days. At night, I find myself writing and avoiding the social media circuit of opinions. The truth is: our family lives this every day.
For context, I also wanted to provide my experience of what it was like to hear the words “Your son has Autism Spectrum Disorder” and the events thereafter that changed my family's perspective on this disorder.
Before my son was diagnosed, several proceeding events took place that horrified me and kept me up at night. The first incident was my son wandered from our home during the day, while I was using the bathroom. My son (age 4 at the time) and daughter (age 3 at the time) were playing in the living room, safe enough. The doors were locked and they were heavily engaged in playtime. So I went to the bathroom, as I usually do. When I came back into the living room, he was missing. I searched the house casually at first, assuming my son was hiding in play mode. But inevitably it turned into frantic fear. No response from my son. I checked the door, it was locked. I still went outside and began calling for him, 15 minutes of bare-footed walking around our property in borderline hysteria.
Thoughts flew through my head, I am terrible mother, I’m so stupid. This is all my fault, what do I tell C.S.I.?
Finally after calling my husband at work, employing the help of my landlord- we spotted my nearly naked son frolicking in the nearby arroyo. My son was within ear shot of me, he simply did not respond to his name. He was completely unaware of self-preservation (see the photos of an arroyo) and uncertain as to why I was upset. There was a clear detachment in his demeanor.
I cried, my guilt was endless and the burden of this guilt translated into isolation. I am horrible parent, how could I not known he snuck outside? How did he get out there?
From this day on, our home was Fort Knox. And to this day, it continues to be.
Within a month we met with his primary care physician, who referred us to a behaviorist for mental health screening. The suspicion was autism. The behaviorist then referred us to a specialized psychologist for more intensive screening, she felt he had some classic symptoms.
The months that followed he began his first year in elementary school, we immediately met with his Kindergarten teacher. We asked that he be screened for IEP (Individual Educational Plan) intervention. Our concerns at this point were his language delay (he could barely construct sentences), his behavior (wandering, detachment to his name, relationships with other children, meltdowns, etc.) and the general concern that something was wrong.
As we waited for the appointment with his psychologist (screening for autism), two months passed into October. The school was familiar with my son’s issues and had advised their attending teachers and additional staff that he is to be kept an eye on. Well, unfortunately on this particular day things went terribly wrong.
"7 Tracking Devices to Find a Lost Child with Autism" {illustrative} friendship circle, 2014
After the dismissal of lunch recess, my son was told by assistant teachers to follow the students back into the classroom. Being of the mindset of a wanderer, he followed the other children only half way. It is assumed he exited out a side door of the school, where he walked from the elementary school to the two lane highway tucked not too far from the property. My son began to walk, oblivious to his safety, along the semi-busy highway.
I will testify that God was there for my son in this instance, because two hikers walking along this rural highway spotted my son trekking along the roadside. They escorted him back to the school, unaware my son has no concept of self-preservation. Staff searching in the parking lot spotted the two hikers bringing my son back to the school.
The time I was told he was “missing” was 15 minutes, I will argue that he was missing 25 minutes based on the distance trekked and his age at the time of the incident. Needless to say as his parents, we were both absolutely horrified but we were reassured it would be handled properly and seriously by the school.
ABA Therapy {illustrative} Autism Speaks, 2015.
By the end of the year, on the day of my birthday, we finally received the official diagnosis of Autism Spectrum Disorder for our son. Truth be told, I mourned. I mourned because I couldn't keep him safe from this disorder. My son stood before me, kind hearted and animated. A young mind so innocent, yet so complex.
We protect our children from danger at all times, but with this experience I couldn't take away the anxiety and fears he felt. There was no magic pill or remedy. This is a neurological disorder and I began to recall the horrors of my grandfather's trials with Alzheimer's disease. The wandering so similar to my son's and sadness he underwent well into his final years of life. Both being so different yet so similar in it's behaviors. I mourned, in a isolation I cannot verbalize as a mother.
The quest for therapy began shortly after the official diagnosis, with waiting lists as far out as two to five years (depending on the resource). Applied Behavior Analysis (or ABA) was not provided to children over the age of 5. (And as of 2015, is still not available in our state) My son unfortunately was not eligible because his birthday was too close to start this therapy. As a reference to the reader, “ABA is the only FDA approved treatment for autism. ABA encourages positive behaviors and discourages negative behaviors. In addition, ABA teaches new skills and applies those skills to new situations.”
As an additional narrative to ABA, although there has been a push to allow ABA for children over the age of 5 with the proper funding (because Autism doesn't go away at 5 years old) many states have elected not to support these necessary programs. Thus cutting mental, behavioral health programs exceedingly. The message this sends to those with disabilities reliant on these services is black and white: you do not matter. Or better yet, when it comes to our children and mental health:
No child left behind only applies to the neurotypical child.
It would be a year later before we would acquire a formal university panel review for our son, he would be again diagnosed as a classic autistic, severe. With a language disorder as an added bonus to our combo meal. The necessity of acquiring this full panel assessment for our son was to secure services and resources in any state we moved to. Because a university diagnosis holds more water than a private psychologist or specialist.
Appending these assessments and necessary therapies, we also had our son screened (by referral) a neurologist. Our son had developed a common issue with headaches from as early as four years old, however they grew in intensity after the age of five. Commonly these headaches escalated into full blow migraines (dark room, no noise, painful kinds). A little understood fact here is that epilepsy and Landau-Kleffner Syndrome may be a concern for some children with autism. Just as the fore-mentioned comorbidities. these illnesses can be identified with or without the presence of autism.
Treating Anxiety and Obsessions: Nothing to Fear but Fear itself? {illustrative} autism center of pittsburgh, 2015.
Interestingly, "Studies suggest that 15 to 30 percent of individuals with autism also have epilepsy" So, understandably, we are still concerned. Because there is no promise that your ASD child won't develop epilepsy, it's a 50/50 situation. What you are reading in journals and studies are literally what the doctors know at this point in time. All you can do is continually follow up with your neurologist yearly for screenings, this is nerve wracking when your child suffers with chronic headaches.
Our son was moved forward into first grade on the context of "staying with his friends", despite his lack of readiness. The university who screened our son the following school year was disgusted at this logic. But as fore-mentioned, no child left behind only applies to the neurotypical child and even under that context fails poorly.
“When a school cares more about it’s rating than it’s students, all I can say is welcome to the United States public school system.”
We have experienced the hardships of getting therapies, battles with the public school district, compulsory schedules, meltdowns, social isolation and parental guilt. The question of “If there was a cure for autism, would you take it?” is answered with a honest yes. Not because of the hardships for us, but the hardships our son copes with. He has meltdowns where he begins to pace and inevitably it becomes fight or flight. He has difficulty with change, car rides, going out in public for extended periods of time. He lives in a state of fear more often than not in these situations. I refuse to argue with the activists who feel that neurodiversity should be accepted. I agree, but I also support finding a cure for this disorder.
I am not disowning my son or shaming him for his condition. My child suffers, he is not yet aware he is autistic. Just as I have dealt with my own difficulties (Dyscalculia and ADD), I know he will too. I remember how embarrassed I felt for years for my lack of ability in the simplest of mathematics, in the inability to read numbers (even now it lingers). I was teased by classmates, bullied by teachers (You're just lazy!) and occasionally a counselor (You will probably not make it to college. Try a trade instead.) So as an adult, I had to learn how to function in a mathematical based world. It's still crappy day to day, but I am graduating college this year. Thank you, public school system.
The resilience my son will develop from his obstacles will then sprout the tools necessary for his success. With loving support from his family, these hardships will be complimentary to his character and development. My son is not a special little snowflake, he is a little boy trying to adapt. He has had times of bullying, loss of friends, confusion and sadness. I only hope that children not yet born will have every opportunity that non-neurotypical children do not necessarily have yet. I still support finding the cause and ultimately the cure for neurological disorders. In Layman's terms, it's called common sense.
covert narcissism {illustrative} wisegeek.org
Since my introduction into the world of autism, I have become familiar with an underlining trend within the autism community. Keeping into consideration I saw it well before I even knocked on the front door. This trend is that of the “self-diagnosed” autistic. I will only focus on the children’s portion of this issue and the “diagnosing” parents. I also reinforce that these children have no formal, clinical diagnosis but instead have the opinion of the care giver as to their parental imposed "disorder".
I could relate that this phenomenon is caused by a societal obsession with attention and forms of narcissism. However, I will argue, that often this is more related to Munchausen by proxy syndrome (MBPS) when it is applied to the creation of false diagnoses and illusionary illnesses.
Or even plausibly, parents who live vicariously through their children’s lives to compensate for their own short-comings. Whatever the reason, I find it disturbing and disgusting in its lack of moral or ethical values. To a point, I want to slap a copy of Mommy Dearest across their faces.
This has become a societal trend, one I cannot ignore and has led me to have a deep disdain for the contributors of these dysfunctions. In part two of this series, I will provide an informed and educational perspective to this shameless cycle of “narcissistic-parenting”. I will not discuss people such as Jenny McCarthy because she is not relevant. Hollywood should stay in their little world and fuck themselves. We already have enough problems ongoing in the communities of autism without the pablum. The more clear the unveiled malpractice of these parents, the more insightful it is to the audience here. Please join me in part two of this editorial as we pursue the dirty laundry often concealed.
[1] "Facts About ASD." Autism Spectrum Disorder (ASD), Centers for Disease Control. February 24, 2015. Accessed April 29, 2015. http://www.cdc.gov/ncbddd/autism/facts.html.
[2] "Facts About ASD." Autism Spectrum Disorder (ASD), Centers for Disease Control. February 24, 2015. Accessed April 29, 2015. http://www.cdc.gov/ncbddd/autism/facts.html.
[3] Gillberg, Christopher, and Elisabeth Fernell. "Autism Plus Versus Autism Pure." Journal of Autism and Developmental Disorders 44, no. 11 (2014): 3274-276. Accessed April 28, 2015.
[4] Lai, Meng-Chuan, Michael V. Lombardo, and Simon Baron-Cohen. "Autism." The Lancet 383, no. 9920 (Mar 08, 2014): 896-910, http://search.proquest.com/docview/1508931440?accountid=12085.