The amount of awareness that has been raised around autism since my son’s birth in 2004 is impressive. After the expansion of the disorder to encompass autistic disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS), childhood disintegrative disorder, and Asperger syndrome- the level of severity across the autism spectrum has expanded as well.
The American Psychiatric Association merged these four diagnoses together in 2013. The range of symptoms, and varying degree of effect on each individual, is the “spectrum” part of autism spectrum disorder (ASD).
The Diagnostic and Statistical Manual of Mental Disorders (DSM) ,version 5, is the current tool used by clinicians to observe and diagnose ASD. The difference between version 4 and version 5 regarding ASD, was the improvement of the diagnosis process through a more precise characterization of symptoms. Version 4’s lack of defined symptoms was leaving many suffering from developmental and social disorders, to live without the diagnosis needed to seek medical care.
So basically, this change has allowed many individuals to get the care that they need through creating a succinct way to bill insurance for these varied disorders. Now that there is one diagnosis, the average parent seeking any help for their autistic child can expect to take part in at least half a dozen meetings. All of which cost money, and all of which are nothing more than filling out questionnaires. The questionnaires support statistical data collection, and are used to justify whether treatment for the child is appropriate to their individual needs.
I’ve had to sit in waiting room after waiting room, and answer the same three hours worth of questions about my son, to three different groups of doctors/caseworkers. All of this, to prove my son is autistic. Despite the decade of proof from previous visits, evaluations, Individualized Education Programs (IEP’s), and medical records. It doesn’t matter if you need to work, and have no one else that will take him to the visits. That simply adds to the impossible work schedule that I need to take care of my son.
In the end, getting a teenage boy that is:
- Self injurious
- So autistic that I’m surprised he isn’t shaped like a puzzle piece-
– has taken almost 15 hours of specialists office visits to be called “autistic”. I’ve had to wrangle him in one waiting room after another, all so my son can keep being autistic enough for insurance and therapy. I have to do this every three years as well. This part of life is also different than it was when my son was diagnosed in 2007, when the spectrum was much narrower.
All of that being said– it’s worth it if higher functioning individuals get the care that they need. I can’t stress that point enough.
I’m elated to know that so many families are benefiting from the changes that took place in 2013. There are many high functioning autistic people who are getting the care they need, when they previously weren’t. Despite my general distaste for the average doctor, and the many office visits that insurance and legislation require, it’s all worth it when I look at the positive results.
I led in with all of this background because I want to insure, as best I can, that I intend to offend absolutely no one with what I’m about to discuss. The issue I have is personal, and is in no way meant to suggest that ANY individual, on ANY part of the spectrum, doesn’t deserve the treatment that they need. Any level of autism provides adversities, and deserves respect for the situation it creates for that individual, and their family.
If we can agree with that point, then we can continue.
I can’t figure out how to relate to the common way in which autism is discussed today. There are so many catchy t-shirts and memes on the internet. All of which present a positive perspective of autism. I understand why this is happening. There’s a large portion of autistic people that can read these posts, and wear these shirts. Many, if not most, of these individuals can understand the words to one extent or another. Additionally, the family members also want to maintain a positive outlook on their future, and the future of their loved one with autism. That is all fine and well. It’s a great thing to see in it’s own right, because it continues to raise awareness and acceptance. This doesn’t change that I have no way to relate to these perspectives, or positive representations, of what it means to be autistic.
This has been the side effect of autism awareness, and the broadening of the spectrum to include the additional diagnoses in 2013. Its left situations like my son’s to become this group, within a group. My son isn’t just autistic, he is low functioning. Low functioning to the extent that I can’t find a single group out there that seems to be sharing my family’s point of view on autism. What caught my eye was the t-shirt designs that seem to be gaining popularity. All splattered with this positive and detached take on autism.
“Autism is not a tragedy, ignorance is the tragedy.”
“Our world hears autism, and assumes disability. What they don’t know, is with autism comes remarkable abilities.”
And my personal favorite: “Dare to be yourself”
Again, I understand wanting to be positive about adversities. What I realize is that these quotes are speaking to an end of the spectrum that is so similar, yet so distinctly unrelated to what my son, and our family, cope with each day. Still, it creates not what I would call resent, but maybe a sort of “I wish that take on life made sense for us” feel to the situation. It’s like my son is the O.G. autistic person, and these newcomers “just don’t know.” Of course that isn’t true, but this persistent representation of autism, in which it is glamorized, and treated as though there’s a benefit to the individual, is just so inapplicable to our situation. It has taken my son’s disorder, and almost pushed it off in to being the minority of autism that doesn’t have a very public voice. A realistic representation of his life, and the cruelty that has been imposed on him, has become taboo or negative.
If my son is “Daring to be Himself”, then that means he is just screwing with me. I mean, you’re telling me that the years of meltdowns, loneliness, self injurious behavior, and absolute hardships are a result of my son taking a dare!?!?!
If that’s true then two other things become true:
He has a crappy sense of humor.
He’s kind of a jerk.
I’m sorry, but I just don’t believe that my son is either of those things. Monkey has a fantastic sense of humor (I can tell by his choice in Youtube videos). Plus, he is far too happy a guy to be such a jerk that he is putting himself, and his family through all of this stress. The depression, injuries, tears at bedtime, terror of water parks, and seizure episodes- all because he can’t back away from a dare?
I thought it was bad enough when Marty McFly couldn’t handle being called a chicken, but this is on a whole ‘nother level. I mean my son is persistent, and he wouldn’t be here today if he wasn’t a fighter, but if this is some prolonged joke– I’m terrified of the punch line.
My son lives with a cruel reality that he has virtually 0% chance of benefiting from. He will not gain “remarkable skills” that remotely make up for his setbacks. He sure as hell isn’t “daring” to be himself. He is enduring being himself. There’s no peachy perspective to watching my son grow up, entirely alone, in a home full of people that love him. I don’t say these things because I’m negative. I say them because I would never insult his realities, with a romanticized version of what I need to hear, to feel better about his situation. Autism is cruel. That’s my son’s reality, and therefore it is mine as well.
There are children that have it the same, better, or worse than my son. My heart goes out to each and every one of them. That’s why I went through the trouble to acknowledge the massive benefits that come from the 15 hours of doctor visits. I’ll do another 30 hours next week, if it means that another child will get the help that they need. I’m not arguing whatsoever with how broad the spectrum has become. Instead, I’m trying to illustrate the O.G. perspective for those who were in the spectrum long before it was cool (hipster stare).
I praise the positive outlooks, and autistic individuals working their butts off to learn that next life skill, or coping mechanism. Your resilience in life earns my respect and admiration. Furthermore, despite using these t-shirts and quotes to assist in illustrating my family’s experiences with autism; I praise those too. I hope they keep coming up with more shirts, and push awareness one step further with each sale. I have no beef with that. I’m simply doing my part to make a voice for the autistic people out there, to which, that positivity may seem disingenuous, or even insulting. My goal isn’t to undermine anyone’s situation, only to broaden the spectrum of representation for autistic individuals to match the breadth of the spectrum used for diagnosis.