This blog post could also have been called “The Baggage Of Autism” or “Why I Hate Google’s Suggestions…” 🙂
| (no this is not me… but it’s what i feel like today) |
(originally written and published on January 13, 2012)
Ok, I’m telling you all right now that this is gonna be all over the place… and I don’t want this to turn into a blog post that’s pro or anti biomedical treatments for autism, or pro or anti medicine. What this post is about is how EXHAUSTING it is for my kid to have what I feel like is the one disorder that nobody knows a f&$king thing about.
Autism seems to come with a lot of excess baggage. Not a day goes by where I don’t see a story or a posting for some new possible “cause” for autism or “link to a cause” and not a day goes by when I don’t read about a treatment method that’s helping asd kids immensely.
And I believe some of the studies are important and I believe them and I believe that some of these radical treatments are helping some kids and I’m THRILLED for them!
But it is EXHAUSTING to read all the time and having this FB page and blog doesn’t help. Literally every day someone comments on something I wrote on FB or the blog about some treatment method that worked for their kid and they’ll post a link… or they’ll comment on how I shouldn’t give Kyle this med because of such and such report. And then there goes old Autism Daddy wasting 45 minutes at work reading how asd kids were helped by this doc or that diet or this treatment or how this med can be harmful.
Are there any other disorders like this? Disorders where there’s so many treatment options and you’re just on your own to figure it out? What are down syndrome or cerebral palsy like? Are there a million/gazillion different treatment options? And a million/ gazillion different teaching methods? A million/gazillion possible causes or triggers? Seriously, I’m not trying to be sarcastic, I really want to know…
What also gets me about autism is “Google Suggestions”. What I mean by that is I hate when Kyle’s doctor prescribes something like a cream for his eczema and I go to do a Google search for “hydrocortisone and autism” and before I finish typing “au” it knows what I’m looking for which means that literally thousands of people searched for the same thing… and I go on to do the search and lo and behold over 9 MILLION results come back… some with scary headlines…and I’m like, “do I even bother reading these?”
Try it with ANYTHING! What’s the mildest drug you can think of? Tylenol, maybe? Do a search for Tylenol and autism and over 2,000,000 results show up… some saying it’s bad for asd kids, others finding Tylenol to be a possible trigger to autism… But I bet if you dig deep in those results you’ll find stories of asd kids whose lives were changed for the better with Tylenol. You can’t f&cking win!
Your kid have allergies, or a cold, or maybe is having trouble sleeping? And once in a while you think about giving him a Benadryl? Well don’t you dare do a Google search for “autism and Benadryl”! Over 1.5 million results show up pretty much telling you not to…
With vitamins it’s the opposite. Do a Google search for ANY vitamin & autism. Google suggestion will know exactly what you are looking for and then you’ll find MILLIONS of results saying Vitamin C cured my son, Vitamin E took away his adhd, Zinc reduced the spitting/ saliva play!
Again, it’s not that I don’t believe some of these claims. I’m just frustrated that there’s so many freaking options out there. That’s why I’m so curious to hear from parents of kids with different neurological conditions (mr, cp, down, etc) to see if they have to deal with this INSANITY or are the treatment options more cut & dry.
By the way I did a lot of the same searches with down syndrome & cerebral palsy (Tylenol and ___, Benadryl and ___) and yes for some there were millions of results but for almost none did Google suggest something. Google wasn’t sure what I was searching for which means there hasn’t been many people doing those searches.
As I said this blog post is all over the place. I know this might sound CRAZY but maybe I’d be better off raising Kyle if there was no internet. I was going to say I’d be better off raising Kyle 20 years ago, but I’m sure that the services are much better now. So I’d love to stay in 2012…
But if I could go into a time machine and go into the future and see the 30 year old Kyle. If he’s still severely autistic despite everything we’ve tried, but he’s happy, then I’d like to come back to 2012 and just not have the internet to put ideas in my head.
Send him to school, get him lots of therapy, make sure he’s happy. If he has an infection and the dr prescribes an antibiotic just give it to him. Since there’s no internet at my disposal I can’t search “amoycillin and autism” and read the 1.6 MILLION SCARY RESULTS!!
Sometimes I really believe that saying “ignorance is bliss…”
That’s all I got. I’m gonna end it there… My Friday rant!
THE END
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I would love to have a time machine myself. I worry so much about the future it's hard to focus on the present.
Agreed. I also find it very distressing how much we are preyed upon because there is no agreed upon cause. Going to an autism fundraiser and being practically assaulted by companies selling "cures" is so frustrating. When there I'd a walk for the cancer society or some other faction there are no tents filled with snake oil salesmen. I wish these autism organizations protected us a bit better. Sigh.
Well my autie has CP also and NO they are nothing alike! Tight hamstrings? Do this exercise. Heel cord too tight? Cut it. Tell the school the kid has CP what do they do? PT and accommodations galore... (NO second opinions or testing needed). Tell the school your kids got Autism? You have to prove it, then they don't accept your proof and then they refuse treatment or intervention because your kid doesn't meet their criteria. Autism is full of BULLSHIT!
I have another one for ya. Fibromyalgia.
Just like autism, there is no census as to what causes it, or how to treat it. Is it Auto-Immune? Neurological? Psychological? Environmental? What kind of doc should you go to?
My son is 15 and Autistic. I am 35, and have Rheumatoid Arthritis, ADHD, Fibromyalgia, Narcolepsy, and have been fighting depression since I was 6. My 10 yr old daughter (so far) is normal and healthy.
I waited to get her MMR till she was over three, and we are all GFCF, because that is what works for US. It doesn't for everyone.
I have stopped looking into what Google says about most things. It is frustrating and exasperating. No one really knows anything. I use my judgement and observation to decide what is and is not appropriate for my family.
I used to track down all the newest ideas, and stress over everything... Had to give it up for exactly the reasons you describe!
we have a lot in common it seems... I am the parent of 6 kids, (2 auties both age 8, 17 year old with ADD, 19 year old, 23 year old, 25 year old, and 4 grandsons), MY physical and mental health issues are on the back BACK burner... (fibromyalgia, complex regional pain syndrome, PTSD, anxiety disorder, mood disorder and OCD). I read lots of blogs about parenting kids with autism, but nothing so far about parents like us! Have you come across anything like that?? If so, please share! :)
http://mylifebeyondlabels.com/
Anung This might be up your valley then. :)
Hey Autism Daddy, thought I would suggest something to you, I just figured it out for my blog... but anyway you can integrate facebook with your blog, so people can comment HERE with their facebook accounts.. share your blog and or blog posts on their facebooks, gmail, google + twitter etc.
Ok the tutorial is here: http://www.allblogtools.com/tricks-and-hacks/exclusive-integrate-facebook-comments-box-for-blogger-in-very-easy-and-simple-steps-full-guide/
Don't click the 'try demo' just scroll down and follow the tutorial. To search for script in HTML you press Ctrl + F and type in the script you are searching for in there :)
and if you want to see an example of what i mean you can see it on my blog: http://maniacalmagniloquence.blogspot.com/
Anyway thought I would suggest it to you because it makes it easier for people to leave comments on the actual BLOG.
and if you need a hand figuring it out, feel free to email me.. I would be happy to do it for you.
Your blog is awesome and inspiring.. thankyou for doing what you do.
This particular update struck a chord, as the medical maze is something I have been struggling with.. staying up til 4am doing oodles of research and just going in circles. I have folders of printed out and highlighted articles.. trying to find an answer.. to what I don't know.
So thankyou for sharing.
I try not to worry about that stuff. My Oliver is a happy child. What more could I ask for? Much love and peace for your family.
Heatherly
My 13yr old has Aspergers and Fibromyalgia. I feel equal frustration with both these diagnosis. No real cause, no real cure, no concrete suggestions that help the masses of people who have either of these things. Frustrating beyond believe!!!!~Angela Atkinson
Actually, I think the Google suggestion is based on your prior searches...and since you obviously search a lot about autism, perhaps that is why?? Not sure, but it is a possiblity...
it's based on other peoples searches but also contains yours - though you can clearly see (and remove) your own
wow AD I could have written this myself. This past year or so I've "mostly" stopped doing Google/Autism searches, because I have become so so SO frustrated!! Like you said, one person will say this worked, and another person will say that same thing is life-threatening. So do we take a chance with our child? I don't know.
It is so frustrating, and I know YOU know.
My son was dx at the age of 3 with severe autism, non-verbal also and his mentality is that of maybe an infant and he has a lot of stimmy stuff that varies one day to the next. That "breath holding thing" Kyle does would honestly scare the crap out of me..
When he was first diagnosed, up until this past year, I lived on Google searches reading this, printing that, going to this or that specialist.. to no avail. My son has made extremely minimal progress, if you can even call it that.
My son is also 8 years old and I thought about what if I were raising him 20 years ago, and I'm thankful for the fact that there's more knowledge/awareness out there, on the other hand, it's a damned if you do, damned if you don't approach when searching the internet.
How do we know what to do? I've tried MANY things with my son, and honestly I have NO idea what's really working or helping anymore. How do I know? It is the new probiotic that is making him less stimmy or could it be the extra vitamin B6 I started at the same time? Do I remove one and take the chance and deal with the consequences or stay put.. I don't know and I don't want to find out!
And like you, I'm happy when I hear about something that "cured" their child, but were they as severe as our boys are? I don't want to sound mean, but I doubt it. I actually get angry at times because there really is no cure, so how can so many people claim this or that cured Autism? If that were fact it should work for ALL people with Autism.
It's horrible and unfair. And yet.. I wouldn't change him for the world, explain that.
What you said about raising them 20 years ago...My Uncle was autistic. Very Obviously. He was my best friend as a child, though, being about 5 years older than me, he was about at my socio-emotional level. I learned later that he carried a mildly retarded diagnosis, and in a later study of "refrigerator mothers", I believe that my Grandmother had one of the few doctors that looked beyond the books. If he had diagnosed my Uncle with autism, it would have automatically followed that it was Grandma's fault, according to the theory of the times. Obviously, it was not. So he went with the alternative diagnosis in order to still get them some sort of services, and keep Uncle Bill at home where he was obviously well loved. It must have been so awful for those moms to have autistic children that they just couldn't help, and then finally go to a doctor begging for help, only to hear that it was all their fault because they really just didn't love the child enough.
I also feel as you when I hear about children that were "cured". I wonder if they were truely autistic, and not suffering from something else that was causing "autistic-like" symptoms. I don't begrudge them their child's health, but I feel they may have been misdiagnosed as autistic to begin with.
Daddy.. keep ur head up. your hearrt knows whats best.. love your blogs and big fan of your page!!