(originally written & published on February 23, 2012)
I have a soon to be 9 year old son with severe / classic non-verbal autism. I’ve written on here countless times that he has the receptive language & expressive language of about an 18 month old and he has been for years.
And a few days ago I painfully recalled what my son used to be able to do / how his brain worked when he had mild PDD-NOS before his huge, unusual, late, slow regression. (you can read that by clicking HERE)
And now that you know that you can better understand my controversial posts a few weeks back about those who say they wouldn’t change one thing about their asd kids if they could. (you can read that HERE & the follow-up post HERE)
One thing that came out many of the comments is that why would you want to alter your autistic kid’s beautiful mind? And why would you want to change his brain? His brain just works differently than most of ours. Not worse, just different. And a lot of this comes up again BIG TIME when I talk about the fact that we’ve tried certain prescription medications on Mr. Kyle. People write that meds are dangerous, meds have horrible side effects, pharmaceutical companies are evil, etc
I’m really curious if the people that feel this way are the people who’s kids they feel were born with autism. Because if you saw your kid have a lot of skills, if you saw your kid speaking, and then saw all of that regress and fall away, regardless if you feel your child’s autism was caused by something (vaccines, etc) or he just had late onset autism, if you saw what your kid was capable of before it slipped away, wouldn’t you want to alter his mind to get it back?
I’m not writing this today because I’m looking to write another controversial post. I swear.
Sounds like a real picnic, huh? Who knew the brain was responsible for so much!
Parkinson’s in a brain disorder that usually comes on after the age of 50. And comes on slowly, and slowly starts eating away at one’s brain and their skills start regressing.
And what do you do when you start getting Parkinson’s? You start fighting it by taking lots & lots of drugs. Just like classic autism there is no true cure for Parkinson’s. You can hope to try different treatments/meds to lessen the symptoms and to hold on to some of your skills for a little while longer.
But I’ve seen first hand how adjusting my dad’s drug cocktail by adding in a new med, or adjusting a dose, or even adjusting the time of day or the time between between doses can have a huge impact on his brain from one day to the next. One day I’ll visit him and he’ll be completely lucid and conversing and his speech can be understood and his body will seem more flexible. And another day he will be much more rigid and his voice can barely be understood and he can be hallucinating / confusing reality and his dreams.
Most of that good day vs bad day I attribute to the drugs. So if drugs can help that much with Parkinson’s, a disorder that affects the way the brain works. And if drugs are accepted and can play such a pivotal role in the treatment/ management of Parkinson’s, why are so many in the autism community so against / afraid to try drugs?
When you are living a normal/ typical life and then you feel Parkinson’s start to eat away at your brain and you can actually feel your functioning level start to regress and describe what it feels like to others what do you do? You FIGHT IT TOOTH AND NAIL! And you try every drug possible, side effects be damned! (Read one of Michael J Fox’s books and this is the vibe you will feel)
But some of our kids with autism developed normally for the first couple of years before autism set in and ate away at their functioning levels and yet we are afraid to try drugs on them. Why?! Because they can’t tell us, communicate what is happening? If they could wouldn’t you be fighting it tooth and nail?!
And I’m not talking about or looking for drugs that will cure autism. Just like Parkinsons I’m talking about drugs that will help diminish some of the debilitating symptoms and improve one’s quality of life… even if it’s just for a few months.
Now if your kids are high functioning or have Aspergers I can understand being hesitant. And maybe drugs aren’t necessary to truly improve their quality of life.
But I’ve seen first hand with my dad how drugs can have altered by dad’s brain and have a HUGE impact on his functioning level, mood, happiness and general well being.
I’ve written about how drugs have rewired my brain and helped me IMMENSELY with my depression.
(you can read about that by clicking HERE corrected link!)
And I’ve written a little about some of the meds we’ve tried with my son. And here’s a little more.
Over the last summer Kyle was filled with RAGE. He was very violent and having multiple major meltdowns/ tantrums per day where he could be self injurious and hurt one of us. Starting in September, with the help of a psycho-pharmacologist who specialized is spectrum kids we’ve had him on low doses of two old school meds, 2 meds that if you use google will scare the bejesus out of you, 2 meds that were talked about in the book/movie “One Flew Over The Cuckoo’s Nest, and 2 meds that have helped Kyle IMMENSELY…
The 2 meds? Klonopin & Thorazine…
2 scary meds, in very small doses that have rewired his brain a bit and improved Kyle’s quality of life and made him a much happier kid. He is NOT a zombie in any way. He is just Kyle but without most of the meltdowns/ violence.
And I know that Kyle won’t be on these meds forever. And coming off of them will probably be pretty darn rough, but for now they are helping manage some of his symptoms the same way the Parkinson’s meds manage some of their symptoms.
That’s all I got. I just want to leave you with the fact that Parkinson’s is hereditary and my dad has it and his dad had it, so it’s probably heading ol Autism Daddy’s way someday. And I will be fighting it tooth and nail. And hoping that the evil drug companies come up with a cure or at least even better drugs with fewer side effects.
But between now and then, I’ll be looking to and depending on those evil drugs to manage some of Kyle’s more severe debilitating autism “symptoms”, the things that get in the way of him being happy or making any significant progress.
That’s all folks. The end! 🙂
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Wow, you are truly an inspiration! I have 2 asd kids & 2 nt kids. One of my asd kids takes meds (mainly for severe depression) & these help his quality of life. I totally agree if something is going to make uour or your childs quality of life better then go for it!!! :)
I do understand the reluctance because some meds do alter the child/adult so much that they aren't 'themselves' anymore, but I also believe it's always worth a try. Our daughter is an Aspie, but because she's gone through ten years of being misunderstood, mistreated, and much more before we got people to listen to us, she is so full of frustration and rage, and yes, her meltdowns were epic. They would last 3 hours or more. 3 hours of not being able to reach my daughter just broke my heart. Her grades were suffering, she has no social skills (though she is improving since we've started OT and other therapies). Why wouldn't one want to improve the quality of their child's life? We made the choice to put her on some ADHD meds as a trial. We were shocked at the difference. The rage is nearly gone, the meltdowns, when they happen, only last 30 minutes and are few and far between. I hear nothing but praise from the school now, rather than daily complaint calls. No, it hasn't cured the Asperger's, yes, she still has her stimming behaviors, she still can't tell a joke from seriousness, she still speaks so literally that sometimes I want to scream, but she's happy, so I am happy too. Yes, the side effects of a few of the meds we tried scared us, but we have finally found one that works with minimal side effects. I don't judge someone who chooses not to use meds, but I ask them not to judge me either. It was a choice between seeing my daughter happy again or watching her go into such a terrible decline and suffer from depression and anxiety. These choices are never made lightly, are they? Thank you so much for sharing your blogs.
Autism Daddy, the people saying pharmaceutical companies are evil are likely using this as a reason for not medicating their children in the same say they patronized McDonald's and WalMart. Of course those companies are doing a lot of harm, but it's inconsistent and petulant to refuse their assistance in some cases (ASD kids, i.e.) and not others (chemotherapy for a parent, i.e.) If we learned of a medication that could help our son be more consistent in his levels of functionality by rewiring the way his brain has been trained to work, we would jump on it. It is heartbreaking to see a child who was capable of higher levels of thinking yesterday regress the next morning and need help putting on clothes--because HE is terrified and cannot understand why he can't do today what he could do yesterday. If there was a medication that could help him not feel so awful, you'd better believe we'd be first in line.
Good blog. Food for thought. Without speaking for the folks who say "I wouldn't change my son/daughter", I still believe a lot of that attitude is attributable to the idea that saying you want a change feels like a betrayal; like you're somehow saying "I'm not satisified with my child, give me a new one."
And I also think (my opinion only) that the most adamant of these people are really arguing the idea of eugenics moreso than the idea of maintenance drugs.
Anyway. . . good post.
i know i've mentioned this before also, but i see the correlation between ASD and parkinson. my mom has it and i even mentioned it to her neuro, who looked at me like i had two heads. parkinson-kyle, parkinson-ashley. how many more are out there, it can't be a fluke!
My mother has parkinson and my son has pretty severe classical autism..I wonder too if there is a link..
I agree with you, AutismDaddy. Our son isn't currently on any meds, but if his condition worsened I would certainly consider it. (For the time being, he's making good progress without meds.)
As I've watched both my grandparents and great aunt slip away to Alzheimer's, it's incredible how that degradation is like watching Riley's recovery in reverse. The timing of my grandmother's decline has particularly mirrored Riley's progress -- almost skill for skill. My grandmother is on meds, and they have helped very much with her depression (though nothing outside of that, unfortunately). I wonder sometimes if I was able to give my grandmother the same therapy I give my son, if she'd improve at all. Unfortunately, I now live in a different country than she does, so that's not possible.
I also just think that, in general, the less we judge the choices other Autism Mommies and Daddies make, the better. Our kids are all SO different, in symptoms, onset, progress, everything! I would never be so foolhardy to believe that what works for my son is clearly the one and only answer out there. We each have to sort out our own path, and recognize that that's what it is: OUR path.
i was on the fence about medication for my 2 sons who are on the spectrum as well. the main reason i chose to medicate are that they both have severe anxiety; and my youngest also has a mood disorder as well as the autism and anxiety....it was getting more difficult for me *as a single mother* to deal with all of the anxiety, all of the fits of rage and so on and so forth....it took me a long time to do it; but we are all moving forward together more at peace with one another....great blog!
Have you ever tried AC chelation with Kyle? This is not a suggestion but an honest question. We have been doing it for about 4 months or 18 rounds as it is referred to. My 4.5 year old has MAJOR expressive language issues and everything we have tried yeilded marginal results.
The chelation is going pretty well except you have to get up in the middle of the night three days a week. We are definately seeing gains, it just moves really slowly and takes like 4 years or 200 rounds on average. This hardly seems a sacrifice if you can get a functionong kid out of it!!
Just wondering if you tried this with Kyle and if there was a worsening of symptoms. I did not see you list this in any previous posts. Anyhow, chelation is my last big push ... trying to get an objective picture of the reality of whether it works as well as it is touted too.
I apologize it this bothers some people, I know chelators are chemicals and some research does show these may be harmful.
I'd love to find out if that works for you! My ASD son is also non verbal.
I would most definitely love to follow up with you on your child's progress! I have never heard of this treatment
I think it is a great blog indeed, its like our home to the T. What he is going through( meaning Kyle) my son is going through, but I must say my son is doing so much better off the harmful drugs now, he is just on Lexapro 30mg, and the fish oil and vitamins, doing way better than before. My son is just like Kyle in many ways and in some way even more severe at times. We found a lot had to do with the meds. Just our story, not saying Kyle should not be on meds, just our scene thats all.