I Don’t Want To Cure My Son’s Autism, But Everything Else That Comes With It
April 14, 2016
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Now Reading: I Don’t Want To Cure My Son’s Autism, But Everything Else That Comes With It
April 14, 2016
(originally written & published on April 14, 2016)
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.
In that post I wrote:
“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….
So I wrote that post in January of 2012, and for the next few years I would re-post it every 3-4 months or so because it is something that I felt strongly about…
And every time I would repost it, I would always take a lot of heat from the high functioning and Asperger’s community. They would accuse me of being a horrible parent because they would say that I was trying to cure my son’s autism. And they would accuse me of practicing albeism (definition: discrimination in favor of able-bodied people).
I have stopped re-posting as of late. Mainly because I’ve achieved a bit of a higher profile the past year or so, and I don’t think it’s necessary to fan the flames as much. I wrote that as a young, unknown blogger and as I read it now with the word bullsh-t in it, I can see how it’s written in a reactionary, seat of your pants kinda way that some could take offense to.
So why am I bringing all this up again?
Well because one of the more rational arguments I get from people on this topic is basically the idea that “you don’t want to really cure the autism. It’s the comorbid* conditions that really get in your sons way.”
*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.
And I kinda touched on my opinion of this way back in 2012 when I wrote a follow up post to that original controversial post. In that post I wrote:
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.
But this idea of autism being not that big a deal, and it’s the comorbid conditions that get in my son’s way keeps coming up in comments on my page & blog.
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”
And in the comments of that post a woman named Stacey wrote:
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.
So after reading Stacey’s comment about her kid making lots of progress. And her notion that he is a typical autistic child and thinking about all the other comments over the years about how it’s not the autism that’s getting in my son’s way, it’s not the autism that’s making my son do this, it’s not the autism that’s making him do that, it got me thinking…
Then what the heck is the autism exactly?
Now for the rest of this post, I’m gonna pull quotes from the wikipedia page for Conditions comorbid to autism spectrum I know wiki’s not always the best source, but I checked the sources that wiki is pulling from and they are all pretty stellar & reputable. Here’s how autism is defined
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 maybe it’s not the autism that’s making him hold his breath so much, maybe it’s his anxiety.
— So the autism isn’t bringing on the seizures, that’s his epilepsy of course.
— So the reason why he’s still non-verbal and considered low functioning despite tons of the best therapies isn’t because he’s autistic. It’s because he has an intellectual disability on top of his autism.
— So when he used to open & close the doors all the time that wasn’t an autistic behavior, that was an OCD behavior.
— So the fact that he doesn’t feel intense pain but brushing his teeth or getting his hair cut seems to be intensely painful to him isn’t because he has autism, it’s because he also has sensory problems.
— So the reason that he used to only need 3 hours of sleep a night (before we discovered the magic of melatonin 🙂 isn’t because of his autism. It’s because he also has a sleep disorder.
Well then what the heck is autism again?
“Autism is a developmental disorder that affects three crucial areas of development: communication, social interaction and restricted patterns of behavior.”
Ok, but then so how is my son affected by autism? I’m not exactly sure. It seems like the other stuff, the comorbid conditions seem to affect his life more than the autism
So maybe I’m not looking to cure his autism at all. Maybe I’m not a curist! Maybe I just want to cure all the other comorbid conditions that are on top of his autism. Maybe if we can cure all of those, we’d be left with a 12 year old genius who is thrilled and happy that he has an amazing, unique, autistic mind.
And I don’t think anybody would be upset with me and call me a horrible person if I said I wanted to cure my son’s intellectual disability, or his epilepsy, or his anxiety, or his ADHD. It’s only when you say you want to cure your son’s autism that people get upset.
So maybe I don’t want to cure his autism anymore… but let’s be honest, it does seem like the autism is the connecting factor between my son and all these other conditions. And those stats are rough. 25% of asd kids develop epilepsy. 30% of asd kids also have OCD. 50-75% of asd kids have sleep issues.
So it really is hard to be thrilled that he’s autistic.
Because I think it’s safe to say that odds are, if he didn’t have autism, he wouldn’t have epilepsy.
Odds are, if he didn’t have autism, he wouldn’t have an intellectual disability.
Or anxiety, or ADHD, or sleep problems…
So it’s hard for me to not to want to cure the autism… if curing the autism made all those other conditions disappear.
But I’ll say it loud and clear. Maybe I don’t want to cure my kid’s autism!
I just wish he was like Stacey’s kid… and just had easy, breezy run of the mill autism where, like her son, with hours and hours of intense therapy my son could make some significant gains.
I think I’ll end it there. I’m not entirely sure why I wrote this post today. Stacey wrote her comment back on March 28th but I’ve been hearing her type of comment for a few years now. I think the combination of Stacey’s comment on March 28th, combined with this being autism awareness month so I’m reading and hearing a lot more miracle stories, combined with me doing a lot of public speaking this month and talking about my son and his type of autism all brought this post to the forefront.
And let me just say once again that I guess I’ve changed my stance from back in 2012, and now I don’t want to cure my son’s autism, but boy do I wish he didn’t have the type of autism that also comes with epilepsy, OCD, ADHD, sensory issues, etc, you know?
Can anybody fault me or give me flack for saying that? I’m sure they can and they will, but that’s my story and I’m sticking to it! 🙂
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).