Over four years back, when I was a young blogger I wrote a post called To The Autism Parents That Say "I Wouldn't Change My Kid For The World", I Say Bulls--t!! where I comedically railed against parents that use that phrase.
"I wouldn't change him for the world."
Come on, really?! Your kid sleeps less than 2 hours a night because of his autism. You wouldn't want to change that?! Your kid doesn't talk because of his autism. You wouldn't want to change that?! Your kid bangs his head against the window because of the big A. You wouldn't want to change that?! Your kid smears his feces against the walls. You wouldn't want to change that?! Your kid recites the same phrase from Dora The Explorer all day long. You wouldn't want to change that?!....
....Do parents of kids with cancer or diabetes say that? No, of course not those are life threatening diseases. Do parents of blind or deaf kids say that? I'd be curious. Do kids with down syndrome or cerebral palsy say that? I don't know, but I doubt it.
So why are all the autism parents throwing that phrase around? Why do we feel like we have to be ok with it....
....Then why did you try the GFCF diet? Why did you try neurofeedback or vitamin supplements? Why are you fighting for more ABA therapy?
You know why? Because you want to change him. You want him to progress. You want him to be more typical....
*In medicine, comorbidity is the presence of one or more additional disorders (or diseases) co-occurring with a primary disease or disorder; or the effect of such additional disorders or diseases.
Ok, so for those who've said getting rid of his autism is changing his personality and the way his brain works. To those folks I say, "I honestly don't know how his brain works. There are so many debilitating stims and habits that get in the way. So maybe you're right, maybe behind all the stims and add/ ADHD behaviors theres a beautiful unique autistic mind. So if you want to talk semantics maybe i don't want to get rid of / cure / change my sons autism, maybe I want to get rid of the tons of things that get in the way of him making any significant progress. But in my sons situation that's everything, the stims and behaviors and autism are all intertwined.
Most recently I wrote a post called Why Autism SuperMoms* Make Me Feel SuperBad where I talked about my frustration when I hear stories about mom's who singlehandedly brought their asd kids from one functioning level to another. And the * in the title was explained later in the post where I said that these miracle stories like Carly Fleischman & Ido Kedar might need a warning on them saying "*results not typical"
People need to realize you do not have an typical autistic child. I HAVE A TYPICAL AUTISTIC CHILD. He was moderately autistic and language delayed, and through early intervention, years and years of therapy, dietary intervention and an above average elementary school in our district, yes, I pulled him from special ed to mainstream, now almost un-detectable. Good for me. However, unlike The King, my child, Carly Fleishmann, Ido, your friend's sister's daughter, etc etc, do not have the additional burden of intellectual disability. Autism is Autism. intellectual disability is what it is. It is very likely and unfortunate that The King has both of these compounded by his epilepsy. Do NOT ever feel bad. You did everything you humanly could, just like I did, just like they did, however, as I said, our autistic children do NOT have a compromised intellect. They responded differently to the interventions we've all tried.
Autism spectrum disorders (ASD), including Asperger syndrome, are developmental disorders that begin in early childhood, persist throughout adulthood, and affect three crucial areas of development: communication, social interaction and restricted patterns of behavior.Ok, so Stacey's comment above is that if my son just had autism, then with all the therapy he had over the years and all the hard work that he & we put in he should have come a long way by now since autism only affects communication, social interaction, and certain behaviors. Unfortunately he hasn't come a long way, and I guess that's because he's got several of the comorbid conditions that go along with autism.
Here's the list of the comorbid conditions that go along with autism from that wiki page. I'm going to highlight in blue and include some stats on the ones that we know that the king has on top of his good ol' run of the mill autism...
The prevalence of anxiety disorders in children with ASD has been reported to be anywhere between 11% and 84%
2) Attention-deficit hyperactivity disorder
3) Bipolar disorder
4) Bowel disease
6) Developmental coordination disorder
One in four autistic children develops seizures, often starting either in early childhood or adolescence
8) Fragile X syndrome
9) Intellectual disability
The fraction of autistic individuals who also meet criteria for intellectual disability has been reported as anywhere from 25% to 70%, a wide variation illustrating the difficulty of assessing autistic intelligence
10) Neuroinflammation and immune disorders
11) Nonverbal learning disorder
12) Obsessive-compulsive disorder
About 30% of individuals with autism spectrum disorders also have OCD
13) Tourette syndrome
14) Sensory problems
Unusual responses to sensory stimuli are more common and prominent in individuals with autism, although there is no good evidence that sensory symptoms differentiate autism from other developmental disorders. Sensory processing disorder is comorbid with ASD, with comorbidity rates of 42–88%
15) Tuberous sclerosis
16) Sleep disorders
Sleep disorders are commonly reported by parents of individuals with ASDs, including late sleep onset, early morning awakening, and poor sleep maintenance;sleep disturbances are present in 53–78% of individuals with ASD. Unlike general pediatric insomnia, which has its roots in behavior, sleep disorders in individuals with ASD are comorbid with other neurobiological, medical, and psychiatric issues. If not addressed, severe sleep disorders can exacerbate ASD behaviors such as self-injury
So after reading all that, then maybe autism isn't the bad guy. Maybe his autism isn't causing any of the king's major problems.
So it really is hard to be thrilled that he's autistic.
-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20 This way I can make a little money to help pay for my son's after school & weekend therapies. This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!