Thursday, April 14, 2016

I Don't Want To Cure My Son's Autism, But Everything Else That Comes With It
















(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...


1) Anxiety 
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
5) Depression
6) Developmental coordination disorder

7) Epilepsy  
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!  :-)

THE END!







-- 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!!








30 comments:

  1. Thank you I appreciate your candor and identify.please continue to share:-)

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  4. I'm a step father of two. One, having Autism that has a lot of co-morbid conditions attached to it (both are Autistic). Anxiety, ADHD, OCD, Sensory Problems, Sleep Disorders.. Just to name a few right now. He is brilliant.

    The other, a little girl.. She has, "normal run of the mill" Autism. I have no doubt in my mind that she will be able to integrate into society and be able to do whatever it is that she desires.

    I'd have to agree; I don't want to "cure" his (or her) Autism. I want to help him, sure. I want to see him progress. I want to see him become high functioning. I want him to succeed and overachieve his goals in life. He deserves it. ANY child deserves that.

    Wanting your child (or stepchild) to be able to reach their goals in life doesn't make you a horrible person. You can't fault someone for that. You can't give someone flack over that. I hope both of my step children accomplish more than I ever can. That would be MY biggest accomplishment.

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  5. My son is 5. He is high high intelligence...years ahead of his kindergarten classmates. He is on the better end of the spectrum. He has major sensory issues...including major auditory avoidance. I always say...if we could just get past the sensory stuff...we'd be fine. I don't want to change how my son thinks..or his brilliant mind...but God, if only we could change the sensory issues. And by better end of the spectrum I mean the more socially acceptable end. And why is it that we always feel the need to defend ourselves from judgemental people when we have the nerve to sometimes complain? We say "Oh but I don't want to change him". Come on. No parent wants to have a child that will never quite fit in. That doesn't mean we love them any less. We are lying to ourselves and everyone else with that line because we feel guilty because, yes we would. Given the choice to give them an easier, happier life...in a New York minute. But we don't have that choice. So here we are....I compare our life here to chasing a rainbow....in a minefield...full of flowers.

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  6. No matter what we say, someone will find fault with it. My son has all the comorbid conditions that your king has except for epilepsy. We have so far been spared that. I may not want to "cure" everything about him, but I sure do wish my 15 year old boy could take a shower by himself.

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  7. Have you tried MRT? We did a few months of it last summer at the The Brain Treatment Center in California. It was a miracle cure for us. You should look into it.

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  9. I am so with you....I don't know how you write a very public blog....comments can be brutal.

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  10. I don't agree with your previous poster at all.
    My son is in other end of autism. He can get by most of the stuff.
    very easy kid. And he goes to special ed private school in NYC where a lot of high functioning kids go. These kids are high functioning, some of them are pretty ahead of their piers intellectually. BUT THAT DOESN'T MEAN SHIT. Some of them got kicked out of gifted child programs, main stream schools etc. BUT THESE KIDS WHO DON'T HAVE INTELLECTUAL ISSUES COULD HAVE VERY DEBILITATING ALL OTHER AUTISM STUFF. And those thing definitely interfere their learning ability. Putting kids in mainstream doesn't or shouldn't become holy grail. Yes, some kids symptom become unnoticeable, but a lot of them still suffer significantly. I know a kid, who is very smart. but he can't even walk on the street without somebody carrying him on their shoulder because he can't navigate clouds. He is quite tall. One kid is so smart that he is doing way ahead in math but his anxiety is so severe that he occasionally throw tantrum and rest of the classmates have to leave the room. We all want our kids to improve/CHANGE so that's why we fought for the funding from DOE to send our kids to this school.
    Most of people want our kids to change.

    So there is nothing wrong with the way you feel.
    You can't be liked and agreed by everybody in the world.
    If your kids autism become unnoticeable, good for you.
    But most of the people even though with high functioning ASD, their battle don't end there.

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    1. I agree completely. I've had high-functioning autism as they call it, all my life. I struggled all through school because I learned differently. I always felt like it was just me not doing things properly. I've had a hard time making and keeping friends my whole life because I just couldn't seem to connect with others properly. It seemed that every time you go for special services to get extra help or privileges for school they treat you like you were stupid or different or someone with a problem. Now I'm 25 and living on my parents bedroom floor and have to rely on my already busy dad for everything. I was diagnosed with diabetes type I when I was six and I was diagnosed with Aspergers near the end of my teen years. I also began to have germaphobic OCD symptoms around my mid-teen years which have progressed horribly these past few years and especially this year. Yes I do like having generally higher intelligence, but it comes with a cost. For quite a while I've struggled asking why I'm even alive but have held on thanks to my religious beliefs and my loving family. I actually want people to know about the injustice that was done to me. I wish you well with all you struggle with. :)

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  11. Have not commented in a very very long time. Just to add that you forgot one co_morbidity or associated condition for some or many kids in the Autism spectrum which intellectual dissability or intellectual impairments. This makes it even more difficult. Some have more than one or two co morbid conditions. Thanks for your posts!

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  12. My son is High Function Autistic but let me tell you. This has been the roughest year of dealing with him. Every associated condition you have spoken of has come out in him full force in the last 8 months except for Epilepsy. Its hard to watch him develop these conditions. He is in therapy and I only pray that it helps get control of all these things. I enjoy reading your posts!

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  13. I would give anything for a cure for my son, including my own life. Even high functioning autism has created enormous barriers and tremendous heartache for him that he does not deserve. I don't care what anyone says. My son without autism would still be my beautiful son...just without autism. I know wishes his autism would go away, too.

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  14. My son is closer to Stacey's son than the King, however I would "cure" our co-morbid conditions in a second. I genuinely love my son's Aspergen quirks but the ADHD, impulse control, anxiety, etc make his life harder. I read a lot of blogs written by Autism parents, and your blog is my favorite by far. Your honesty and candor iss refreshing.

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  15. I WANT TO CURE MY SON'S AUTISM. and I'm proud to say it. That doesn't mean I don't love him unconditionally. But it does mean that classic nonverbal autism, epilepsy, type 1 diabetes, OCD, ADHD and severe sleep issues make his life extremely difficult and only want him to be the happiest he can possibly be in every moment of his life.

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  16. I WANT TO CURE MY SON'S AUTISM. and I'm proud to say it. That doesn't mean I don't love him unconditionally. But it does mean that classic nonverbal autism, epilepsy, type 1 diabetes, OCD, ADHD and severe sleep issues make his life extremely difficult and only want him to be the happiest he can possibly be in every moment of his life.

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  17. I recently watched the apple short videos about Dillan Barmache, who doesn't speak verbally and uses his iPad to communicate. He says that his autism enables him to see the world in a unique way-hear flowers, see the wind etc. It made me think how my 4 year may see the world in a beautiful, different way. However I may never be able to hear how she experiences those things because of her communication limitations. She may not be able to enjoy the world because of the anxiety and OCD she has. maybe autism is beautiful in its pure form, but it never manifests in just its pure form. It comes with a lot of other baggage, and that's why I wish there was a cure.

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  18. I don't know how I feel about this piece yet. It brings up a lot for me. I do think it's an important topic--we've certainly faced a lot of ableism in our autism journey, and I've had moment I wanted it all to go away. We have multiple comorbid conditions we are still learning to manage. Otherwise N's autism is "invisible" meaning strangers shout at him that he's a "spoiled brat" and he needs his "ass whooped." To the point that he is now agoraphobic and we are in the process of getting a service dog so he can go out into the world safely.

    As parents, we will do anything to improve our child's quality of life, and I think that's what you are saying here. Whether it's autism or not that creates the difference between what is defined as failure or success for our kiddos, we want to fix it. We want it to be easy. And autism with or without comorbid conditions is not easy.

    I have had moments where I wanted the autism to go away. What I want now is to make the world safe for N as he is, because he is his own person.

    I find it ableist to think of one end of the spectrum as "better." Yes, our trials are very different because N is high functioning, but that has actually closed more doors to support and growth than opened them because he "looks normal." I once had a goal of N being able to pass as neurotypical just as I learned to pass as white and NT in hostile environments. My goal now is to support his physical/psychological/social development just as I do with my typical kiddos, but to simultaneously raise awareness outside our home because whatever our abilities or disabilities, we are all people.

    Thank you for this post. There is a lot to think about here. I will be back to read more.

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  19. One has to wonder about parents who say they don't want to make things better for their kids with autism (i.e. cure their autism). Maybe they get some sort of emotional payoff. I have no idea. All I know is that anyone who says they don't want to cure their kid, but admits to spending endless hours in intensive therapies, well, that sounds a little contradictory to me. And yes, I do know what it's like. My son has mild Asperger's, but it's not so mild that he doesn't have issues that very much interfere with life, some of which are because he looks "normal" but is definitely a-typical. All we can do is love them and then love them some more while helping them with whatever they might be facing.

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  20. I found your blog recently and a lot hits home with me although my son is still young (nearly 4, non verbal, severe ASD). If I could take away his ASD at a moments notice you bet you I would. I never got that comment either from other parents.

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  21. I just stumbled onto your blog. I love that you tell it like it is. I'm the same way. I share some the same thoughts as you. My son is autistic Dsm-5 criteria My goal for him is to become verbal and Independant so when I die he will be okay not living a group home but rather on his own or with a sibling if I do decide to reproduce again . I might get a lot of lib for this but asperger's is considered the golden child everyone thinks asperger's when your talking about autism.Which asperger's to me isn't really Autism.If your going to broadcast asperger's as autism it's only fair for them to bring up the other main forms of autism severe and medium.the idiots we are dealing are misinformed people commenting something they don't understand not every autistic child is Aspergers. It's easy for people to comment that don't have autistic children to shame parents of autistic kids that it's bad to want to find a cure for their kid it's like saying your kid has cancer you shouldn't let them get treatment to get better or cured shame on us for wanting something for our kids sake in questionable times in society . The asperger's community don't deal with the ramifications of a child that can't say I love you Mommy and Daddy or whimpers when they need something but can't talk to tell you what they need. They have what we want for our kids but shame us for wanting a cure for our kid to be like theirs . Asperger's to me isn't really autism unless you hit the right buttons in the kid to see their autism like features that you don't see in plain sight.

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  22. this is just a comment about the first red bit of the post so... kids with autism don't get a the chose their baggig it just happens the way I see it is like a umbrella the kid is the stick thing and the autism is the bit that shilds you from the rain but not all of the umbrella are the same same are big and same are small as the rain of life comes down people will try to get under the umbrella but the people are atcaly the baggeg not real people and the stuff that gathers under this umbrella are all diffrent sizes and this is what makes me and the rest of the kids with autism so intrasting not one of us is the same we are just as diffrent as every one eals but just because we are labeled people tret us diffrent and no one likes that at all most people with autism haet being huged yet I love hugs we are just like every one eals and thats how we want to be treted ps sorry for all the bad spelling

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  23. Thank you for sharing. My own children struggle with sensory processing and anxiety. While they are higher-functioning, these have been the biggest areas we are faced with, we had great success pushing for early interventions- OT was especially helpful. I wonder how insurance also affected the success of various individuals. There are so many great resources out there, but they can become extremely costly.

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  24. How disappointing that your stature as a well known blogger has turned you into a yielding politically correct say-nothing. I loved your 2012 post and this one makes me hurl. I'm sorry but you cannot disentangle Autism in this way and hang all your grievances on comorbidity. Most autism comes with them and some don't. The latter are usually among the highest functioning. But it's still autism. And for all but the highest functioning it's a horrible disorder. It's not just my son's epilepsy or his intellectual disability. It's the freaking package. And autism is the house of all those co-morbid tenants. I'm disappointed you're pandering to these neurodiversity folks. They don't have your child's autism or mine and they simply got lucky that their brand of autism came with fewer tenants.

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  25. What I've noticed is those that don't want to 'take away' the autism are parents of younger kids. I might have been closer to that line of thought when my son was younger. But having an autistic teenager is another story. Those quirky character traits might be kind of cute in a little boy, but after the hormones kick in the whole thing changes. I would sell my soul to the devil if it took away the autism. Thanks for telling it like it is.

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  26. Our kiddo sounds so much like tours except for seizures. And I don't want different child, I WANT TO TALK WITH MY SON!!!! So yes I would make it go away. And I like that you say it. Makes me feel not alone

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