The Insanity Of Autism: Do Other Disorders Deal With This?
January 13, 2012
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Now Reading: The Insanity Of Autism: Do Other Disorders Deal With This?
January 13, 2012
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!
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” :-).
55 People Replies to “The Insanity Of Autism: Do Other Disorders Deal With This?”
I have watched videos of 2 yr olds with down syndrome.. and secretly wished that it was that easy with autism. She could dance and sing and talk and brush her teeth… and my much older autistic child cannot do any of that. I have wondered the same thing. Am I being jealous over nothing. I am uneducated for sure on other ailments.
Mitochondrial syndrome. My son has a rare form and there is not a lot of info out there. Fortunately, my son was diagnosed by a muscle biopsy (not symptomatically), so we have never run into anyone questioning the diagnosis. I love his neurologist because she is upfront about what she doesn't know and will research questions that come up. Plus he has autism. According to MitoAction the combination is fairly common.
another disease with unknown causes and varying treatments/reactions — try the rare one called mastocytosis
My 2 Aspie boys were born in 95 & 96. Before that dx they were dx with, Long QT Syndrome (LQTS) which is a heart arrhythmia they inherited from their Dad. Also known as Sudden Arrhythmia Death! Therefore, any drug that affected the heart rate was not allowed. The unforseen blessing was that I ignored all those treatment studies. I was limited to strictly behavioral interventions. I was glad about that.
I understand. Not only does my son have autism, I have several health problems: interstitial cystitis (a chronically painful bladder), possible adrenal fatigue, and depression. I also have back pain and sleep apnea. With the IC and adrenal fatigue, there are thousands of suggestions, and "traditional" medicine just doesn't seem to have much to offer. Tomorrow I'm going to see my naturopath, and she is NOT going to like the fact that I've gained weight and have been eating a lot of food that she'd rather me not eat . . . but I also can't really afford to eat the way she wants me to, NOR can I afford to be on all the supplements she wants me on.
i found out after several doctors and experts that my sons eczema was from a peanut allergy. we went the route of every cream n calming lotion u could imagine, but he still ate peanut butter. he wasnt able to talk at 6 years old n couldnt tell us if anything was wrong verbally .. finally we found a doctor that knew something about autism and checked for the allergies. his skin finally cleared up, but he dealt with this mostly silently for years!! i support any parent that has a child on the spectrum, because u have to be something special to have a child that special too. other ppl look at it as a curse, but i feel blessed that i had my son. i wish he were healthy like im sure every parent wishes for their child, but i wouldnt trade him for anything in this universe. i pray for patience n understanding in my weak moments cuz i cant see it thru his eyes … but i wish i could. even just for a day so i could understand it better.
I know how you feel. I get over whelmed too. When my son was diagnosed, at 18 months, I went the biomedical route. My doc said if you go that route by the age of 5 you can reverse many symptoms. Otherwise things are more perminate. He told me he couldnt cure autism, but he could help the body be healthy and see what happens. It turned out my son was missing major vitamins, had a couple of parasites, and a bacterial infection. After I treated all that I'm left with a kid who isn't on the spectrum, but still has some issues.
I if you wanted to see if his body could be healthier – then contact a Biomedical doctor, otherwise just deal with what you can. You are doing a good job. Just silence google. 🙂
I have to say i love your blog, you are saying everything I have been thinking and wanted to say. So thank you. My son is also on the autism spectrum and there are day's that I just want to scream because i just don't know what to do or how to react to a situation or what to believe or not to. For us it is a daily battle of do I or don't I do this or that or give him this or that. When my son was first diagnosed at age 6 i was told he may never be able to do certain things, he won't ever be able to read or work or drive a car or do anything a normal child of his age can do. my son is now going on 17 and has proven time after time that he can and he will…All tho he may never be able to drive because of the seizures he has shown that with a little hard work and a little help anything is possible. Every situation is different no matter who you are and no matter what disability you may or may not have. We don't say I can't in our home, we say you can do it! Yeah it may take a little longer for my son but he can do anything he sets his mind to, if he really wants to do it. Yes we deal with the melt downs and the daily routines…but that is all just part of who he is…and why we love him so much.
I have an almost-five-year-old son with ASD and SPD, as well as an almost-two-year-old son with DS. I know exactly what you're talking about, and, no, there's no comparison. The answers with DS seem much more concrete and finite. It's infuriating.
I understand COMPLETELY everything you wrote here. I have two kids, age 8 now, diagnosed at 2-1/2. I was SO frustrated in the beginning because the doctors don't tell you ANYTHING when they tell you, "gee, sorry, your kid(s) have ASD"…and NO treatments options offered. NO phone numbers to call & talk to other parents. NO suggestions or diets to help heal their antibiotic ruined guts. NO NOTHING!
For the first 6 months I researched for HOURS every night while my family slept. There were times I was closing my eyes when they were waking up. I had to do the research, talk with a bunch of strangers (parents of ASD kids) on Yahoo to find what was working for them and then put together an action plan of what I felt would work for each of them. ME, MYSELF & I did this!
Then, I had to find out what resources were available in my area for PROPER diagnosis for each child, where the DAN doctors were that would take my insurance, what supplements would help them and what state agency was going to help pay for their therapies. When one child was MISdiagnosed, I had to search out a parent group in the area that gave me a LARGE grant to find the doctor, get him properly diagnosed and shove that up the state agencies system to get his services paid.
Then, the school district was a while other nightmare. I ended up having to sue them to get what they were supposed to have in the first place and then Kindergarten was a nightmare of a year for all of us.
I started them on probiotics and tons of vitamins, tweaking it along the way to find the balance they each needed. They had TONS of food allergies I had to find out on my own along the way and they were FINALLY potty trained at 5-1/2 right before the nightmare of Kindergarten.
And all the while, their dad was working & I felt like a Lone Ranger battling all of this with swords against dragons just to give my sons a fair shot at life.
I did most of this by shear instinct and trial& error. I am thankful I live in a country where I COULD do these things because it paid off in the long run. My boys are now 8, one is out of all therapies and other than his social issues that crop up, most people don't know he is an ASD child. The other son does still need therapy & speech & OT, but he is FAR better off than he was 6 years ago.
Yes, AD…I agree…is there any other disorder out there where you are not offered treatment or if you are offered it, you're only going to get half of the treatment because insurance certainly isn't going to pay for it and neither is anyone else!
I think what you are doing is allowing so many precious parents with their own unique situations to vent their frustrations, fears, concerns and stories in a safe place. They can share their hearts and low and behold find out that they are not the only one's feeling this way or going through this kind of struggle. I have said it before and I will continue to say it, you are blessing more people than you realize – even those who read your blogs and posts but have not had the courage to respond – yet.
I love your blog. You are me with a better vocabulary. I finally told my wife that if there is a real cure or treatment that works it will be national news not just on the internet. We have spent so much money on all the different cures, DAN docs, therapy and haven't really seen much progress. We just kind of wing it and see what works. We have to go to one of my son's doctors every three months to get his prescriptions filled and my wife literally tells him what to prescribe. I just changed jobs and am dealing with the COBRA stuff and my wife tried to fill a prescription last week that was 500 bucks, we didn't refill it and my son is actually doing well without it. I just really appreciate you and your blog, I don't feel like an ahole for thinking a lot of what you write. Keep up the good work!
Autism Daddy. I feel your pain brother. I have an 8 year old nonverbal autistic daughter. I believe the bottom line is nobody has the answers. All we can do is filter as much of this information being thrown at us using prayer and common sense and make the best possible decisions we can with what we have. My wife is an Autism Rock Star Mom too. She is constantly searching the internet for grants and treatments. She makes sure Angel gets to her OT and Speech Therapy appointments. I've come to realize the most important thing we can give these kids are love, patience, and understanding. Stay strong brother!
I did that when my doctor prescribed Effexor for my severe anxiety/panic. Bad move. I made it far worse for myself by reading about it. Someone once told me that the downfall of the internet is that many of the things on there have absolutely nothing to back them up.
My son is ADD and possibly on the spectrum. So far we only have the ADD diagnosis. While there is a great deal of different stuff and theories about ADD, I don't think that it comes anywhere near autism when it comes to the number of different theories and opnions of causes and "cures".
Autism is just so different from person to person. With the spectrum being so broad, that just adds to all of the different information out there. It IS nuts. I understand how you feel! Yet being the former associate of a child who still had no diagnosis of what her condition is and still friends of her parents who are struggling on getting her the services she needs, I think I'd rather wade through the muck than not have much to go on at all!
I am ADD myself, and feel crazy looking through large amounts of conflicting information about anything. I feel your pain!
Completely agree . . . There are SO MANY things out there that are presented as ways of treating autism. (The most recent one was selling a 'vitamin/mineral supplement' that actually turned out to be a household cleaner! And this was supposed to 'cure' autism! WTF??!!) I think it is probably this wide open b/c no one can determine a cause and there is such an increase in kids diagnosed with asd. So everyone is pretty much in league with the snake oil salesman. I keep hoping someone somewhere figures out a cause b/c maybe that'll shut some of this ridiculousness down . . .
I have found it best to just focus on MY son and MY life situation and let the rest of the world do it's own thing. Sure, I read lots of blogs and articles and FB pages but I try to also "read" my son. He's happy and doing fine by our standards. Have I tried different things with him? Sure I have! It hasn't always worked out the way I hoped and I given up on many grand ideas for the sake of our sanity and his happiness. Maybe it's easier for those of us with severely autistic kiddies to be satisfied with the small stuff. Now that he's a couple months away from 15 we aren't hearing as many suggestions or "helpful" ideas anymore. He is who he is and that's good enough for me! My days of trying to "fix" him are behind me now and boy is that a better feeling than being in research mode all the time. Best wishes to you all!!
LMAO ! I feel the same ! Sick of hearing about Celebrities ASD son Cured by doing a Gluten Free Diet ! Seriously ??? If there are so many cures why do we have Autism ?? My BFF's grandson has Cancer, she is going through the same thing. We are constantly telling each other, DONT YOU DARE GOOGLE IT !! IT WILL DRIVE YOU CRAZY !!
All I can say is that sometimes you gotta push yourself away from the table. Same thing with Autism stuff. You just can't live that way with your ass on fire, on high alert…looking and searching for the the next thing to cure or ameliorate the effects of autism. My husband and I for the first time in 23 years took a vacation for two nights away. OMG did I see how the effects of stress that lead me to near insanity! You have to give yourself a break. Just know it is ok to turn a blind eye for a little relief. Prioritize…even cruise ship director!s get vacation!
Autism Daddy – you're spot on. Great blog. As someone with MS and fibro though I can say as far as drugs and cures – yes, ASD shares in the ignorance of the "whys and hows" – for cause and treatment.
Amy Knox – you're spot on. It's bullshit.
It's for all those reasons you listed that I don't bother anymore it's hard enough without adding more crap to worry about so I just stopped doing it. The wife still dose it but she handles it much better than I do.
the reason there is so much information is that for along time advocates were trying to promote awareness as no one knew the real true aspects of autism. as far as people knew if a child had autism they just stared into space all day. now they did get what they wanted, however it EXPLODED. now we need awareness for mental disabilities bc there is virtually no true info out there and people still think of false ideas as they once did with autism. its all about advocacy. the awareness DOES need to be there though. btw I have a son who is 11 and has autism.
I saw a couple of comments suggesting that Google only suggests searches/answers based on your past searches or visited sites.
I can verify that's not true. Because long before I ever typed the word Autism for the first time, it was showing up in suggestions. Also a popular "game" that a lot of people play with google is to tell someone to go type something totally random and watch for what google pops up in it's suggestions list. Everyone that "plays" gets the exact same list. So it can't be based purely on what we've searced on before or sites we have visited in the past.
I'm right there with you on this one… it's frusterating, confusing, scary, aggrivating, and saddening all at the same time…
And to think all I ever wanted to do was help my son…
Yeah, I know what you mean. So Much. All I can say is that I've learned to look at what the actual drug warnings are, try it out and if it works, yay, and if it doesn't, then stop it. Sudafed makes her irritable. Zoloft worked AMAZING for the anxiety, but (and THANK GOD I had the forsight to warn the school we were trying a drug with a black box warning, and please let me know if there were any changes, bad or good) because the principal called me to say she was throwing desks. Zoloft makes her violent to the point her doctor marked it as an allergy so she won't be accidentally given anything like that. Ever. And the school didn't punish her. Lesson learned – always warn the school of med changes. Because too – how will you know if it's working in a good way?
I just realized yesterday that she might be a hoarder. She's twelve. A new hole in my heart, a new hurdle to overcome. Another thing not covered by insurance, I think. But hey, you know us autism parents. We're the strongest ones out there, right? Take a breath for me.
Ha – my word verification is pessimism. Go figure.
Great post. I was just thinking–and writing– about this topic this morning, but in a different context. My son has autism and it can be mind boggling. But, really, am I (or autism parents in general) getting whinier by the minute? There are lots of maladies in this world and lots of instances where people suffer and are confused. Sometimes I think we lose sight of the fact that this is all part of the human condition. Yes, many parts of autism suck SO bad. But what about cancer, poverty, racism, a never ending list of diseases, plights and conditions that suck equally as bad, if not, dare I say, worse. It doesn't diminish our pain or frustration…just puts it into a new context.
I have 2 "normal" kids (17 and 10) and a 14 year old son with Asperger's. With my oldest, I read all the books and studies, certain that if I didn't do everything they said to the letter (like breastfeeding her) I would completely ruin her life. I hadn't had previous experience in this so the books had to be right, right?
Would you believe that I stopped breast feeding her at 6 weeks and she actually turned out really great? True story bro. And I hear we are not the only case.
I was told by a woman, who apparently knows everything there is to know about child rearing, that if I would "wear" my son (carry him in a wrap across my body) he wouldn't scream like there was no tomorrow while we were in the grocery store. My reaction to that tidbit wasn't the best, but that's another story.
Anyway…my point is…I figured out long ago that you just gotta do what works for you. Raising kids on the autism spectrum is more intense and tricky than raising "normal"kids kids, but the goals are about the same…keeping them safe, happy and healthy; helping them grow to be the best they can be. You gather tips and bits along the way, use what works and ignore the rest. You know what works for y'all and what probably doesn't. Don't worry too much about everything else out there.
Of course, you've probably heard all this before, too. Do with it what you will. Sounds like you are already doing a great job! Also wanted to tell you that I found your blog through Scott Holman's link on Facebook. I'll definitely be back to read some more!
i have to say you rock daddy….
thanks for the honesty and truth in all your posts
OMG!! I can't stop laughing right now because I have the SAME BEEFS about Google suggestions for my sons with ASD. My little guy who is 7 also has ADHD and all the fun that goes along with that including the sleep issues. So when his pdoc suggested we try a new "med", I googled it with autism and got crazy scary results. I then googled it with ADHD and got some slightly positive results. It's really annoying!!I just found your blog so I'm going to "like"your FB page.
Man, I could have written this! My son is Aspergian, highly verbal, but the things we deal with are similar, including eczema, interestingly enough.
He has an infected toe this week and I had to take him to urgent care which was NOT fun, and now he's on an antibiotic and I am NOT going to google it!
At any rate, if it's any comfort at all, I totally feel you on this.
Hi Hillary! I saw one review of a coconut oil in Amazon that says "my eczema and dandruff has been under control like never before since I started using coconut oil." (http://www.amazon.com/review/R2DGGJDULDT0VA/ref=cm_cr_pr_perm?ie=UTF8&ASIN=B003QDRJXY&nodeID=&tag=&linkCode=). Thought you may want to try. Good luck and God bless.
I have my AA in disabillity services and am now getting my BA in education with a special focus on special education and have spent lots of time in Autism classrooms around various degrees of the disorder. I understand every child with the disorder is different. Our motto is "when you've met one child with Autism you've met one child with Autism"
The DSM's definition of the disorder says it is life long. I often wonder when parents say, "this or that" cured their child? It makes me wonder if their child really had Autism to begin with.
Have you ever used EBSCO host? It is a great online library of journals, articles, etc. It is all researched based and may be more reliable than general google info. You should give it a try.
Good luck to you!
I would rather ask my mom or grandmother before I do any searches because obviously they must know something about raising children with no internet.
ha! I know your frustration. I was there once. I stopped doing those searches. Autism is so different in every child, that those searches are just someone else's story. NOT YOURS. I can tell you that Tommy used to NEVER sleep. For years, he was fine with 2-3 hours a night. Nothing more. We first used NyQuil and he was up for 3 days. NONSTOP. Benedryl was our savior. (had to be dye free for some reason with Tommy) Docs knew we were going this route. We received scripts for it. As he got older, we went to Tylenol Simply sleep recommended by his neuro. All of these worked for Tommy.. but i've heard nightmares of what these products have done to other kids. Thats because… lets all say it together now.. "when you've met ONE autistic child, you've met *ONE* autistic child!" There is no handbook. We'd all have one, laminated even at this point. It's trial and error. I am a heavy anti-biomedical parent. Only because those practices almost killed Tommy. LITERALLY. I've since come to my senses and realize that I am NOT a doctor, nor do I intend on playing one with my sons life. Tommy's 17, and docs STILL are feeding you guys the same BS that I heard back in 1996 when Tommy was diagnosed. You do what works… for YOUR child. Everyone else's stories, though insightful, they're still THEIR stories. Everyone's path is going to be different. It IS extremely frustrating none-the-less.
My son has Down syndrome – haven't read all the replies here, so not sure if anyone has responded concerning DS. We don't get the "caused by" controversies because we know it's a chromosome. Once in awhile some controversy about what moms of kids with DS have in common will surface, but really no one seems to care much about that. Maybe it's because we have what a large part of the world sees as a "cure" – prenatal testing/abortion. We have our other cures, although not as many as ASD seems to have, but then maybe that's because abortion has reduced the number of people with Down syndrome so dramatically that we don't have the research dollars dedicated to DS that are dedicated to ASD. We do have some interesting "cures" – gingko, prozac and focalin is one. Massive amounts of vitamins have been touted by various groups. People put their kids on these meds based on other parents' stories. The research sometimes is pretty clear that it doesn't work – even some that seemed determined to prove a protocol was effective have given up, but some still swear by their favs. Who knows?
Someone posted here or on Facebook that "once you've met one child with autism, you've met one child with autism". I think that is also true with Down syndrome – they are not clones. But, I do think people with ASD are even more different from each other than people with DS – but don't tell anyone I said that … :-). The IQ range alone is as varied as the entire population, right? Where, the IQ range with DS is generally borderline MR and below. There are some exceptions, but still not as vaaried as ASD.
My son has a dual diagnosis of ADD, so we do the ADD meds, which have done wonders for him, and we throw some gingko in because my husband believes in gingko anyway, but that's about it. I don't spend a lot of time looking at "cures". At this point, I'm just trying to figure out the best path to adult services – he's 14 – and things seem to get more complicated at every stage of life. …
Hi Autism Daddy, enjoyed your 'rant' and can so relate to it. We are quite new to all this and while we have got as far as he is on the Spectrum we are still awaiting to find out 'where'. I have done general research into Autism and have joined a few groups for support and learning about others experiences and suggestions. But, I feel, at the end of the day nobody knows what the causes of Autism are ….. all the research is based on small numbers and therefore not reliable. My personal opinion is Autism is a diagnosis ….. accept it and move on, to do the best you can to ensure the required services are provided and do the best you can to ensure your child is happy and well cared for. If he has an infection and needs antibiotics give it to him: if he has a reaction he may have had it if he was 'typical'. Personally, I may research the effects of an antibiotic or whatever but I don't add and Autism. If people want to try any of these so called 'cures' and they see some improvement then fine but don't 'preach' to others and make them feel bad because they don't want to try it or have tried and it doesn't work for their child it only causes more anxiety. These researchers and the company's that feed them are only out for one thing and that is either recognition or financial gain. Personally, I say forget it and focus on making life as bearable for your child and yourselves. Thats my rant over and I guess its going to evoke 'outrage' but thats how I see 'it'.
I think the problem is you can't see autism medically where children with down syndrome have medical problems such as heart weaknesses that have to be monitored. We know our kids so well that we see all the behavioural problems they're having but whether teachers docs etc see it the same way is down to opinion so it feels like we're always going in to battle having to prove they're struggling with something especially if they can't communicate too. Another problem with behavioural problems is the whole nature nurture thing. I've come across so many people who believe autistic behaviours are down to the parenting so again we're battling other peoples opinions. If only there was a way to show autism medically. As for the Internet, I think it's evil & amazing at the same time 😉 & it does my head in. Everytime I think I'm settled on something something else kicks up like a bad smell. It's a massive head f@?k. I'd love to switch off to it all but I don't think I physically could.
I love this blog as you always seem to be able to put my thoughts down in words.
Re google search, what happens is that google suggests things for you based on websites you have visited in the past. You see, google is big brother.
God, I know how you feel….it's so damn frustrating and sometimes I feel like I would be better off doing nothing and just concentrating on education…I made the huge mistake of reading Karyn Seroussi's book when my son was first diagnosed with Pdd-nos(now two years later moderate autism).. and based on that I thought I could cure him….I'll just put my head down and work really hard and he will beat this, then later, I though, okay, it's a marathon and not a sprint…then read Kenneth Boch's book and thought, "hey, I'm no scientist, but this makes sense to me" even though my child did not present with many of the same symptoms…now thousands of dollars later with no results but still believing somehow and scared that what if I stop too early right before something works…(i've already given up on the cure")…too late came into the eduction aspect..although he has been receiving EI since 11 mos but no gold standard of ABA for 40 hrs a week and i wonder if I really screwed up here… now I wonder –OMG, what will happen to him when I die…who will care for him and who will make sure no one hurt him and that he is loved.. I have two other kids and I wonder how this affects them…I hate this goddamn disease and congrats to those who wouldn't change their kids despite it all and I mean this sincerely..bless you, you must be having a different experience than me, but this )**#)#disease is taking my son from me and there is not one positive about it….for us and my son's situation autism is a goddawful thief and I Hate it to the core of my soul and I will do what I can to try and save my son from it's clutches but how ….I have always said that if someone said this is all my child can be, I would say okay and we would just find a way to be, but the fact that there can be change and improvement yet no one can tell you which way to go for sure..is agonizing …it's a state of pure torment, never allowing me to rest, enjoy my son or my other kids without worrying about what i should be doing or stopping him from stimming or ……
I also have a child with *classic* autism. I am sure that people are only trying to help when they give you suggestions! I don't think they are trying to *sell* you what has worked for them….
At the end of the day you have to listen to your gut instinct and go with what works for you and your son, regardless of what other people think!!!!
Oh by the way, I really think you should try………… hee hee! 🙂
To Amy Knox AND AD….I have a kiddo with autism as well as CP although his CP is fairly mild. BECAUSE it is mild he can "desk" so he does NOT qualify for all the special CP accommodations like the PT and OT for stretches and exercises and therapies in my school system. 🙁 However I HAVE run across multiple occasions where I try to run searches on various options for treatments and therapies and contraindications for his various issues and can't sort through the millions of google entries…between the autism, CP, Seizures and all his very severe gut problems with gastroparesis and colonic inertia causing him to have to have a feeding tube and surgically implanted tube/stoma for enemas I can't possibly win with the way everything is contraindicated against everything else. If I do ANYTHING with this kid it is likely to cause a problem somewhere else and at least ONE of the members on one of the groups I'm a member of is going to tell me how horrible an idea it is for the problem that group is concerned with. It's all insanity and I don't think they always know what triggers any condition…no clue what triggered my kiddos CP….no clue what triggers gastroparesis or colonic inertia….are his seizures because of his brain damage that caused his CP or did they CAUSE the brain damage….or maybe the seizures are because of the autism….UGH!!! So yes I guess the answer is there are a BUNCH or conditions that are like that.
Daddy.. keep ur head up. your hearrt knows whats best.. love your blogs and big fan of your page!!
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.
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
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
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.
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 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!
Anung This might be up your valley then. 🙂
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! 🙂
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!
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.
I would love to have a time machine myself. I worry so much about the future it's hard to focus on the present.