Autism Is Like A Cough – let me explain
March 8, 2012
You can also filter by categoriesUncategorized
Sorry, we didn't find anything.
Now Reading: Autism Is Like A Cough – let me explain
March 8, 2012
(originally written & published on March 8, 2012)
Dear Parents Of Low Functioning Kids w/ Autism,
I’m writing this letter as much for my benefit as yours. What I’m writing to you today are things that I often need to tell myself every couple of months when I get depressed that my kid is the lowest functioning kid on the block.
If you don’t know already, my wife and I have one child, an 8 year old boy with severe / classic / non-verbal autism. He has the expressive & receptive language of an 18 month old and he’s been stuck there for a few years now with little significant progress to speak of.
And when I look around at the other ASD kids & families in our lives (forget about the NT families!) and how their kids are making some nice progress (even some of the low functioning kids) I sometimes feel like I must be doing something wrong…or even worse I’m not doing enough to help my kid progress.
Everybody else seems to have found their magic potion that while not always “curing” their kid at least helps “unlock” something in their kid.
For one kid that might be the GFCF diet, for another it may be chelation, for another it may be intense ABA, for another it may be the Son-Rise method, etc, etc, etc.
And I said it before and I’ll say it again. I believe that some of those things work! When people rave about the amazing improvements in their kid after ___ treatment I don’t think they are lying… and I am truly THRILLED for them.
But I feel like I’ve come to a realization lately. I heard this theory somewhere, but I can’t remember where so for now I’m taking credit for it. Ready? Here it is…
What I mean by that is, there’s probably 20 things that make you cough (cold, flu, pneumonia, bronchitis, etc). And each of those 20 things have a different treatment, a different way to make that cough disappear.
In the same vein I think there may be 20+ things that bring on autism, or autistic symptoms or whatever you want to call it. And there may be 20 different ways of treating that autism.
And we spent the better part of 4 years trying to find the right treatment to “unlock” my son Kyle and help him make some improvements.
We tried the GFCF diet for over a year (close to 18 months according to the wife’s recollection) and saw no improvements. So our kid doesn’t have the Gluten / Casein kind of autism. We crossed that off the list.
We did intense ABA for a long time. Our kid got burnt out and regressed. So we don’t have an ABA kid.
We tried the Hyperbaric Oxygen Chamber (HBOT) every day for 90+ minutes a day for a month straight and saw no improvement. So we can rule out that something to do with Kyle’s oxygen was blocking something.
We didn’t do chelation, but we did run extensive blood work through our DAN doctor to test his blood for metals & toxins and saw no elevated levels of mercury or anything that would warrant chelation treatment.
We did all the yeast treatments & anti-fungals and saw no improvements. So we can rule that out.
We treated Kyle with strong antibiotics due to a possible positive test for lyme disease and besides the fact that he had the healthiest stretch of his life (no colds, no infections) we saw no improvements.
I could go on and on…
But the point is I’m crazy to think that we haven’t done enough…
We just haven’t found what exactly is causing Kyle’s “cough” yet. If you have found what’s causing your asd kid’s “cough” I am thrilled for you and I understand that you want to shout it from the rooftops!
But maybe what’s causing your son’s autism is different than what’s causing mine.
Do you really think that the asd kid who showed significant improvement with the GFCF diet would also have shown significant improvement through chelation?
Do you really think that the asd kid who started talking after 20 “dives” in the hyperbaic oxygen chamber would also have started talking after 20 sessions of neurofeedback?
Now, assuming you believe those things work than each of those kids had a different kind of autism… one that was helped by gfcf, one by chelation, one by oxygen chamber, and one by neurofeedback.
So for you parents of low functioning kids keep your chin up! You are doing nothing wrong! They just haven’t figured out what is causing our kids’ “coughs” yet!
And for the time being the wife and I are taking a break from trying to figure out what is causing our son’s “cough”. For now we are treating him with meds to keep his aggression & anxiety levels low, and while they are not curing his “cough” they are (for now) making his “cough” less painful & less phlegm-y 🙂
And I’ll scour the Internet every once in awhile looking to see what the newest autism “treatments” are…or some Autism Daddy reader will send me a message saying you should try ___, but for now we are taking a break.
So, again parents of low functioning kids keep your chin up! Be happy when other people find what “cures” their asd kid’s “cough” and forgive them when they shout it from the rooftops. But remember you have done nothing wrong! And you are doing all you can!
You just haven’t figured out what is causing your kid’s “cough” yet and when you do, please share it with me…but remember it still might not be what helps my son’s “cough”
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” :-).
68 People Replies to “Autism Is Like A Cough – let me explain”
Thanks for sharing this extremely informative article on asthma treatment. I recently read about Asthma treatment, preventive measures to control and medication for Asthma on breathefree.com. I found it extremely helpful.
I noticed you said you did not try chelation, but did do extensive testing involving blood work. I did the same thing for myself since I have some degree of Asperger's (which I guess is just another name for mild autism). Thing is, I could tell by how I react to taking chelators – basically all my symptoms going through the roof – that I have a heavy metal problem, but my blood tests and urine tests did not show an elevated level at all. I believe that this is because some people, who are highly susceptible to becoming mercury toxic, do not have the ability to do anything with the mercury other than store it. People like me actually end up with worse toxicity, even though the tests show we shouldn't. The test that I think is better for diagnosing mercury toxicity is a hair test – and not a hair test looking for mercury in hair, but a hair test that looks for patterns in various minerals in the hair. The book I bought to learn about this type of hair testing is by Dr. Andy Cutler.
Dear Friends, Myself, an autism dad… my angel is 7 years old. we tried quite a few things but not HBOT and medicines yet. Been 4 years now. None has made any difference. But yes… what has made difference where in he is happy, glowing, confident and thereby willing to allow us to teach him something in that brief window of time… wants to communicate is "we allowing him to be as he wants… accepting him the way and let him sail at his pace….". Nextly we could see a real positive impact by indulging him in sports… he loves to swim… he loves to play basketball… cycling…billiards…. we allow him to play them as he wants… somehow we could see him so happy.. thrilled and wants to express his joy during those times… Is that not enough for me… Yes.. my son is happy….
I am single mom raising my autistic son all alone , he is teenager now, low functioning, non-verbal, aggressive at times, tried all possible treatments, but he remained low-functioning. Still it makes me feel guilty that I might have not tried something which might have made him better. But could not help with the situation because my son is rejected by his father and in-laws due to his disability. Wish I can find a magic wand one to make him normal.
Thanks so much for the insight Autism Daddy. So well put as per usual.
I just want to converse with my son. For over a year, it's been alphabet practice non-stop on the doodle-pad. I know he's in there, I just can't get a hold of him.
I like this analogy. I used to use the "cancer" analogy myself (not one cause, not one form, not one cure)… but I always felt like I had to pre-apologize "it's a bad analogy, but…" Cough is much better.
It's worth trying different things – what else are you going to do? IMHO you throw the kitchen sink at it and see what sticks. Lots of kids HAVE recovered, though, and there are lots of common threads of improvement (diet being chief among them). So HBOT didn't do much… what have you lost? Some time? Some money? You can tell yourself and your child that you *tried* what you thought was the best thing at the time, with the information you had. FWIW, we did two rounds of HBOT. He seemed to make some good progress after the first one, but the second (longer) one didn't do much.
FWIW, the beauty of the Son Rise program is that you accept where your child is at NOW. You don't pin your happiness on their recovery, and through that, you can make progress. It's been a godsend for us.
FWIW, lots of autistic kids *have* recovered. My child may not, and yours may not… but… they may. We just do our best to give them the best life possible, and if that means recovery then wonderful! If not, then wonderful, we've done the best we can.
You are your child's parent. Nobody cares like you do. If you do the best you can, that's the best ANYONE can.
I have not tried any of these treatments. I have a high functioning, low social 13 year old daughter with Autism. I think that you have to take one day at a time, and do the best you can with what you have been given, there are no cures. Therapy, meds and any help she needs is all I can do.
Just rock on like we do hoping for the best to come
Just love them and do the best you can. That alone is amazing! I dont think of autistic children as needing a cure. I try to figure out what they need, and how I can help them grow. (Make progress)
My son is 12 years now .last 10 years we made a lot of treatments but the most successful thing is to make him close enough to me.his mother and sister's .he is jeunes in some things and always he is his class high grades.dont let him to be alone as much as u can
Why stop trying if the next "thing in town " could be the answer?
My grandson has low functioning autism. They also have not found anything to help him except trying to keep stress down and him happy. You need a break every now and then.
I often refer to Autism like Cancer. We don't know where it comes from or how some people get it and others don't. Sometimes popular treatments work and the patients getter better and others just continue to suffer with the disease forever. Maybe I am a pessimistic person, but the moment I was told my little girl had Autism, I was crushed of course, but I knew my dreams of a normal life for her were over.I know Autism will rob my baby of a normal life that should be full of great promise of a beautiful future. She will be with us, my husband and I forever. We have not had another child, really for fear it will pass to another child. My husband and I have a great faith in God. I know this was what God thought we can handle. So I have stopped pretty much being pissed off about it. Don't get me wrong. I am sometimes struck with such sadness that it takes my breath away. But mostly I just try to make her life as happy as possible. We are in ST and OT. We are in a church school two times a week. And we take a slew of drugs. Then we spend an hour a week riding a horse. Not because it is at a therapy but it was something she always wants to do. I honestly believe that I cannot cure my child from this. I can only help her through it. So i stopped reading the blame game crap about what caused it or the new who ha about try this. I have a little bit of "hate" for people who tell me a new root tea will help my child or so and so was saved from her terrible fits as a child. I have started to just stay "save it" we don't have fits we have debilitating sever autism and for now there is no cure. So as fucked up as it sounds I stopped saving for college and I started saving for long term care for when me and my husband are too old to care for her. Thats my reality.
I always enjoy your posts, they keep me sane 🙂 whether low functioning or high functioning we all have one thing in common we have been "cursed" with Autism. Any your absolutely right about the cough. No two children are alike and what works wonders for one may make another regress. It has to be one of the biggest mysteries around (hence puzzle pieces, since this is one big a** puzzle that we are playing with). I never tried the diet, he has never had any major issues with food so I left it alone. The ABA classrooms have done AMAZING wonders for him, with speech, socializing, academics, we have the "behavior" end that we are still trying to "cough" out. I just stare at him on a good day and pray my hardest to God to let him just stay like that, happy and having a great day – that's all we want. As an Autistic Parents we have learned to appreciate every little detail and progression like we hit the lottery, because God knows if the next day includes a major meltdown or aggressive behavior then I'm kicked back into reality thinking why him, why my son, why us, why any of us, and then I go back to trying to put my puzzle back together . .
"As an Autistic Parents"
So you're on the spectrum as well as your child, then?
you could not have said that more perfectly… I too have tried biomedical shots of b12 gluten free casein free soy free diet multitude of vitamins yeast medicine…… you name it I did it except for the hyperbaric oxygen chamber and chelation. in my son has lost the little bit of language he had between the ages of 5 and six and he will be 7 this summer so I just continue forward hoping to find the cause of his cough…… and I also get down and nice to hear you say chin up because you are right when you say we all are doing whatever we possibly can for kids……. on a final note arbloflacan or something close to that name seems to show promise in last stages of trials I'm hopeful for that
That was wonderfully put. I just want to say that we tried gfcf and aba too. Kudos to you for trying so many things we haven't had the $ or energy to do. Medicine for us made our son's cough worse. I don't know how old Kyle is, but our son is getting better with age. He will be 12 in a few weeks and seems to be improving so much in such a little amount of time. I know this post is old but I am glad you allowed your family to take a break from all that because I know it can be so heart-wrenching. Bless you all
Well worth reposting. Autism is the result of many variables at work, which is why the kids are all so different and which makes it so damn frustrating to treat. I especially loved all the comments here from parents who love their kids so much and have tried everything and then some. What amazing people. I'm privileged to be in their company.
Great post Autism Daddy. I will be re-posting on my site because it is an important message. Hugs.
we have not found angels yet….but i believe that for some kids this maybe a nueon tail problem while others may have environmental factors…whcih explains why different therapys or things work for them…for me the short nueron tail theory works like this…if you need 100 feet of wiring for a house and you only get say 90 or 70 odds are you can still runmost of the house on that with priorities to certain things the brain deams needed…for others who may only have say 40 feet or 20 feet then you brain has to maintain life support functions and can't do much else. For those who say had all the wiring but its damaged by mice or whatever else…maybe they can do something to fix their wiring…but for those who started out with less wiring it may not be as simple.
Amen! Thank you so much for this excellent post. New to your site, look forward to reading more.
I REALLY liked this blog! I mean I like all of AD's blogs but this one hit home for me. My son is 6 and has been in some sort of therapy since he was 6 months old (yes, I knew by then that something was terribly wrong) and I have tried the GFCF diet (although he only eats 6 foods and they are all "pretty much GFCF" anyways). I haven't done the ABA because I can't afford it and I don't think he would tolerate the intensity of it anyways. I can't afford a DAN doctor so chelation, hypoberic chamber are also out of my price range. But he has done SO MUCH speech, OT, PT and feeding therapy through the years and honestly the only improvements I have seen in him came after he started preschool. Frankly I am just tired of thinking about "what more can I do"…I feel like I have spent the past 6 years of his life taking him from doctor to doctor, therapist to therapist and I just realized "WOW, he's 6 and I have missed out on just enjoying him when he was a baby/toddler". I've decided to quit worrying (easier said than done)and just let him be happy. To just let me be happy being his mommy.
Indeed, keep your chin up. It's of little comfort but all I can say is you are not alone.
Great post – we have figured out some parts of the puzzle for my son, GF/CF/SF has helped a lot and antibiotics for Lymes, lots of supplements – all of these are helping but they are definitely not making things normal around here. My son has gone from medium functioning to high functioning with his language, but his behaviors are still off the charts and there is no mistaking that he has autism when we are out and about. We will keep trying (within reason) because when something works it is like a miracle. But we have to have our limits. And we have a great doctor to work with. Those things are essential. Best wishes to everyone who is still looking for the "thing" that will help their kid's "cough."
Since you're saying in the end 'share if you've figured out your kid's autism', I'll have a go and share =)
GFCF diet for 6 months – nothing
ABA approach – mmm, some insignificant progress
Floortime/DIR – some mild progress, or maybe he just liked the attention and playtime
then before hitting the world of biomed, I was seduced by the wholistic approach of homeopathy. didn't expect much of it – little sugar pills with almost nothing in them. And after almost a 3 year plateau the next morning he didn't have a 2-hour kicking a screaming tantrum when his dad was leaving for work. And his speech started improving by leaps.
Now a year later he's never regressed to the state he was in some 12 months ago, we've never had another kicking-screaming morning, yet he's not 'cured' of autism, but different and easier to live with. At this stage honestly I don't care if someone thinks homeopathy is just placebo effect or it was a coincidence. It might be both, but it fixed his 'cough'. Just thought I'd mention, since you've asked =)
we've tried everything (and I mean everything) too. Our daughter is more of a mystery now than she even was before. Nothing has ever really helped all that much, meds included, though we are looking to change those up due to some fun new aggression 🙁 (sigh) We have had all sorts of weird neurological things through the years (tics, dystonia, etc.) that come and go with absolutely no explanation. And yes I think parents and doctors and researchers too need to stop looking at autism or even "the autism spectrum" as one thing. Yes, the collection of symptoms can seem similar, but obviously there are many causes and manifestations. One day we will know, just not yet, I guess.
Excellent post, excellent analogy. I need to read that today!
I am not looking for cure for autism just communication and happiness through critters and nature.
If you ever come to Nova Scotia you are very welcome to come to farm and meet the critters
I've been saying this for a long time. Autism is not a disease with a cure. It's a symptom or side effect, much like a cough is a symptom or side effect of a cold or virus – and you can treat the symptoms and hopefully make them less severe. Sometimes, people have a worse cough – even asthma, and you have to just keep treating it and treating it, and sometimes it's just hell, and sometimes it's not so bad, but it's ALWAYS THERE.
My daughter just turned 13. She's labeled high functioning, but it's taken them this long to finally get her into OT for low tone, no energy (she sleeps 10 hours and wakes exhausted) and poor fine motor skills, to start with. She just turned 13, and NOW she's starting with more "classic" stimming behaviors. She has begun flapping her hands over the last few months. She flings her arms around a lot. She's begun putting things in her mouth and nose again. "Get your belt buckle out of your mouth" 'It's not – it's it my nose' [the prong part] *sigh* At 13, middle school, and fully normal classes, she needs to be able to fit in with the other kids or she will end up with her feelings hurt and not understand why.
I don't know how to tell her that her autistic behaviors are what will make people tease her without hurting her feeling myself. And I'm a bit concerned at their appearance seeming to coincide with the beginning of OT.
Ah well, without our kids, we'd be bored!
You truly ROCK! I love reading your blog…..you and your wife and son….YOU my friend…ROCK!
Raising a child with high or low functioning autism is hard enough- no one needs to make it worse by beating themselves up for "not doing enough." We do what we can- we celebrate our victories, no matter how small they are to NT parents- and we cry. We get mad. We get frustrated. No parent is immune. My daughter has made amazing strides – but I still kick myself because she isn't verbal. Why? Because I'm her mom and I instinctively want to "fix" her. But the reality is that what they need most from us is love, patience and understanding. Hang in there… no matter the cause of Kyle's "cough" – he has committed, loving parents- and that's all any child ever needs. When the cause shows itself, you will be ready to meet it, and kick it's ass. I said "when" for a reason… Autism has taught me that optimism is important. 😉
Hi. My son is one of the low-functioning kids. For my son, it falls into these 4: harmful, no change, minor help, heavy-hitter(ie. I can look back in a year and know we made progress).
I love the fact that you too recognize that not everything helps every Autistic kid. I finally told my DAN! doctor. Look we did GFCF twice!!!! A year both times…. it didn't help. You do it if you think I did it wrong. But I'm not doing it again.
Anyhow, my son has many challenges including aggression and SIB. We've seen more improvements from age 12 to 16 than before. The heavy hitters were neurotherapy and ABA. And btw, there's good ABA and there's also very very bad ABA. I'm sure that's true of other treatments as well.
It's been a lot of work but we've managed to keep Kavan home with us. He's pretty awesome when he's calm. We've just started RDI and I'm hoping it'll be the next big heavy-hitter. Best wishes to Kyle, you, and your wife.
We are experiencing increased aggression complete with punching and slapping. It does not have a pattern that we can discern so whatever is going on when it happens we stop it just to see if there is a calming effect. Sometimes, there is and other times, it simply has to run its course. We have the issue of his verbal skills being very limited so difficult to explain how hitting hurts another and is not a good choice. Sometimes, he will strike out then cry like somewhere he realizes its not good to do and it breaks our hearts to see him struggle so much. He also has complex partial seizures so is on seizure meds which have side effects. We carry on, we love both of our very unique grandchildren and work together to finding ways to cope and to simply enjoy them as they are and they can be very delightful 🙂
Kristin–I'm with you about being leery of biomedical treatments…mind you we have good reason…a Chiari Type 1 Intercranial Anomaly was discovered in the MRI, allong with "non-mylination on sub cortical U-fibres"…so the chanceof regresson is possible..and not one I as a Mother will mess with. However, we've been working with OT, SLP, and learning Sign Language as my 3 yr old is non verbal (does a lot of high pitch squealing though 🙂 )and we are seeing a slow but steady increase in eye contact, and he is able to communicate what he wants (doesn't point at all, despite our various approaches to help him with that). Had all the vaccines, though I delayed the 18 month one by 2 months, and his autism symptoms manifested before we even got that shot. I'll admit, my feeling bad at times wasn't about what you speak of in the blog post Autism Daddy…whenever I saw a NT child doing all the things they're supposed to at their…hitting THEIR milestones, it killed me a little inside. But, I believe in my son's case, his Autism (Classic moderate with severe Sensory Modulation Disorder) is a result of genetics. So for me I don't believe autism is "curable" at present, seeing as reseachers still haven't found all the genes responsible for autism, or even the root cause for it. I do believe quite fervently that my son will be high functioning…when..I have no clue, but everyday I'm incoporating the various therapies into day to day life…getting him to socialize with other kids his age, and spending many a sleepless night learning about the various therapies that I can do with him at home. Its exhausting. And yes, we parents of children with autism don't get a pat on the back to encourage us a lot. So I will say it here…whatever treatment you find works for your kid, and even for those who haven't found that magic combination of therapies that works yet…I want to tell you all you are doing an amazing job. It is a hard road for all of us…many hats we have to wear in a day..with many of us doing it year in year out with only maybe 4 hrs of sleep a night. I commend you all…Autism warrior Mothers and Warrior Fathers. Hold your heads up high because we are parents to these special children for a reason…we can handle it…even though some days you feel like not getting out of bed. We are still in the infancy of our long road and have had many struggles along the way (mostly with ignorant people accusing us of not doing anything to help our children) but its a struggle I and my Husband gladly take. Children are blessings..no matter what happens. Much love to all of you!
Personal opinion based on reading many many posts about vaccines causing/not causing autism. I decide that i believe it is coincidence that autistic symptoms start really being noticed about the time of vaccines. I have seen so many that have autistic and NT kids who all did or did not have vaccines. Our kids had vaccines. Th oldest 4 are NT and the youngest is autistic. I could just say the others had the make-up to not be susceptible to the vaccines but what about the families who opted to not have their kids vaccinated because their 1st was autistic after the vaccines but they had 3 more autistics??
The point is – we don't know what causes it, and different treatments help different kids. Sometimes a break from looking for treatments/cures is as good for the child as for the parent. We all want our kids to be the best they can be, but the kids need that break too. Let them just live awhile and be themselves.
I think you are absolutely right about autism being a bit of a catch-all diagnosis masking a variety of underlying issues. I have been fortunate enough to find some rudimentary answers that have led to improvements in my DD's functioning (though she's still pretty impaired compared to NT kids her age). I pray that you find answers for your son some day 🙂
Dear Autism Daddy,
If you haven't heard it by now, I want you to know that you, Autism Mommy and Kyle are an inspiration to families everywhere!
Wishing you all nothing but the best.
Id like u to know how much your words spread across the world, but here in Aussie land you are such a loud, strong voice for so many parents AND their children! Well, your words touch me & I pass them on to other Aussie mum's (& parents) I was a little concerned that u were going to stop ur page while u & Kyle & ur family focussing on ur boy's health. I hpoe Im wrong & we still get to hear from u? THANKYOU
Thank you for this!!! I have an extremely similar situation. My son is 7 and we've tried it all – antifungal, chelation, oxygen, B12 shots – the whole nine yards, with no results! We put the brakes on constant treatments a few years ago, which I know was the right path, but it sure is still difficult to accept some days!
Thank you so much for this.
"The child psychologist who thought she had all the answers to parenting until she became one herself."
That little boy is incredibly blessed that you're his daddy 🙂 ((HUGS)) to all 3 of you!
Thank-you… This means a lot to me. Especially lately. Thank-you Autism Daddy ((hugs))
— David's (and Joshua's) Mom
Thank you for this post! It is very helpful. My husband and I are very leery of biomedical treatments for our son's autism. He is very young and I'm afraid that something might make him worse. It's so hard to risk what our son has now on something that is not really proven. He is making a little progress with his therapies and I am terrified to do something to his body chemistry that might set him back. I know that there is a chance that it could help him but do I want to risk that? I don't know. Your story about Kyle's regression makes me very afraid of what could happen with some of these treatments. At this point I am only willing to try something that can't hurt anything if it doesn't work. To me that means only teaching methods. We are open to any kind of therapy such as OT, PT, Speech, Equine,and ABA (we do all of these) but that is where it stops for us. Sometimes stopping at this point does make me feel guilty that we may be passing over something that could help him but my fear of the long term effects of these treatments overrides the guilt at this point. I have always thought of myself as a really good parent but the guilt that comes with parenting an asd child is something I never expected.
I'm a dad and really feel for you. We have tried ABA, RDI, GFCF, Chelation, etc…….and after his initial shots, we stopped those too.
My son was on the lower end of the spectrum too. We did see some results with GFCF, it helped him to reduce his echolalia significantly. The really great thing we have done (and are still doing) is "Son-Rise" thorugh the autismtreatmentcenterofamerica.org. This is a very unconvention way, but I am so happy so far with the results. He has made significant progress in the 4 years we have been doing this and is now 15. I would encourage you to go to the website and watch some of the video clips. Good luck.
I really needed to hear this today. Thank you. XXX
A most excellent post AD, I agree with you in that I believe there are different types of Autism – which after all is no more concrete a thing than a set of observable behaviours – and I think my boy has the "boy with some weirdo genetic stuff going on and an enlarged head" kind of autism, as does your Kyle I guess.
Thank you for this xx So often I feel like we arent trying hard enough but sometimes just getting through a week can be hard enough without constantly battling, trying to 'figure him out'..
Wow. I completely agree with you. It can be so exciting/heart breaking to see other children progress/not progress with some of these so called miracle treatments, and not see the same results with the children you care for. Thank you for your insight in to your world.
I love this post, Autism Daddy. I don't think it just applies to low functioning kids, though I do think that it sounds like lots of parents of low functioning kids with autism needed to hear it and it's a message that made me feel much better about choices I have made in the care of my kiddo and myself… I have found that people raising kids with autism tend to be more "lets compare notes" whereas the bystanders- friends, family, colleagues, strangers, etc… tend to get aggressive when they do make suggestions and some of them do come off as though they are suggesting that we are not doing everything we can to help our kids have the best possible chances at a long and healthy and happy life. That drives me bananas. It's not just autism though, I get the same "try this" and "if you don't try this than it's your own fault you are sick or your kid has autism" attitude about autism, type 1 diabetes, RA, and G6PD Deficiency. It is crazy making!
My son is 10 and he too has g6pd deficiency and autism. G6pd deficiency was diagnosed at age 5 yrs old. His doctor was doing a thorough bloodwork to determine if he would be a good candidate for IV chelation. When it showed he was g6pd deficient, the doctor did not recommend IV chelation. We continue to do the diet gfcf soy free, all legume free and have done biomed a-z and back again and still he falls under mod-severe. I still would love to know how to move him along further and just stuck right now.
Anyway, I'm working on a blog post about G6PD Deficiency and autism as kid and I have both of those things and our enzyme disorder was not diagnosed until very late (he was 7 and I was nearly 35) and we had both been exposed to many triggers along the way and it's a widely misunderstood and under diagnosed genetic disorder. My whole life I've had these strange physical reactions to various medications and common illnesses that have very nearly become fatal. Now we know that chances of my son being born alive were extremely slim, because we didn't know and because I kept getting kidney infections so they had me on a common and safe-during-pregnancy antibiotic. That antibiotic is usually at the top of the list of medications that should never be given to a person with G6PD deficiency or if there is a chance the fetus may have G6PD deficiency. Now we know. The point is, that while we can't go back and erase this deficiency, from what I have been reading, I think it's worth ruling out as a cause for some kid's "coughs" or at least for "coughs" changing over time. We adjusted our diet (which was an adventure and a half and means that we rarely eat out anymore and it took half the things kid will actually eat off the menu) and I switched medications and were we cured of our autism? Of course not. But many of my labs returned to normal ranges (I had elevated liver enzymes and severe anemia) and my kiddo? He now has the energy levels of what I imagine a regular 8 year old guy is like. In other words: he is no longer hyperactive and completely unable to focus on anything… the meltdowns still happen, but not with the frequency they once did. He is not locked in echolalia but expressing his own thoughts (non stop and he three-peats. I don't know how he has any voice left at the end of the day. But I think that he has mellowed a bit as he now has to process thoughts instead of just spitting out memorized scripts. )… The sensory super-sensitivity is still there, but he is able to self-sooth/manage much better…. So it has made a difference for us, a very positive one. Is it a cure? No. Perhaps can some types of coughs be prevented with genetic screening for this deficiency? Maybe.(I do know that many forms of chelation are contraindicated when G6PD deficiency is present… Is there a link with all of these "cough" treatments? I don't know… I will keep reading though… I do know that this enzyme disorder wasn't even on our radar two years ago and this knowledge means that he is less likely to wind up with the physical challenges that I have developed over the years and that just rocks. And he can use his own words. Three years ago we did not know if that would ever happen.
So that's my "cough" syrup to add to the mix…. I'll gather the information I've been collecting together and post it on my blog and then I'll share it. It was discovered and helped us by sheer coincidence/luck and wasn't even on our radar, hopefully by sharing it can help other people….
Keep up the good work! Your posts really make the tough days less lonely/isolating!
Thank you :*( It's been one of those days that I just needed to hear this…..
Kids with autism can have sudden improvements that last months or years and around 1 in 10 is thought to improve permanently to the point where high functioning is reduced to aspergers or aspergers is reduced to PDD-NOS!
Certainly there are enough spontaneous improvers to give the impression that lots of therapies work. There are 3 million autistic people in the USA. Of these, 300,000 will 'improve'. Of those, 30,000 will coincide with a one of 100 treatments. Of the 300 who appeared to have success with EACH treatment, one will write about it on the internet and inspire more to write about it and talk about it. Before you know it, others try it and by chance, 300 grows to 600 and so on…
Wait for the RPCTs please!
I too have an 8 year ols son. Our only child. He is moderate to severe depending on what aspect of his life we are talking about. He is not potty trained, but, he can speak, a little. But even then he has severe apraxia, so, I am the only one who can really understand him. He is doing pretty wellin school. not even near a second grade level, but, he is further along then I even expected him to get too.
I too believe there are many reasons for autism and many reasons for cures or recoveries.
We did GF/CF, we did some supplements for a two year period. Didn't see much results. We haven't done DAN yet.It's weird but I am afraid to try it. Hard to explain, but, I am so afraid it won't do any good that I am holding back on doing it. Dumb, I know. But, It is what it is.
Take care, Kelly
I do not see a harm in trying diets, although I am skeptical about them. Even though I am skeptical, doesn't mean they don't work for everybody. I am, however, concerned treatments out there i.e. chelation (the type given via IV like for lead poisoning), hormone treatments, and saunas. These three items could prove very hazardous to a growing child if not administered correctly. There has already been one death I know of due to chelation. Basically, chelation not only pulls out heavy metals, but can pull iron out of your system and can prove deadly. Just research what you want to try thoroughly. Make sure any data you have is reliable, from an objective source, from someone or someplace that has studied it who has nothing to gain or lose if that type of treatment catches on. Just my 2 cents.
Kelly, I don't think you are weird at all. I always freaked out at the mention of a DAN doctor. There is something very scary about all of those treatments. My husband and I did try to GFCF diet because we knew that wouldn't hurt him, and realized quickly that it didn't work. I truly believe that Autism is something you cannot change, the same way that we can't cure depression or bipolar or OCD. We can find ways to help our children cope, but cure? Like Autism Daddy, I don't want to think about cures I also don't want to know why he has Autism. That might sound harsh, but if I knew I was the reason, well, I would just die 🙁
ABA did very little for him too. Forgot to mention that.
I know a lot of people say that vaccinations don't cause autism, but what if they're wrong? Its so heartbreaking to think that once a vaccinations done and its in the body doing its 'damage' (for lack of a more fitting word) that it can't be undone. :(( who knows if that could have began kykes 'cough'
Anonymous, Do you know absolutely what causes autism? No, of course you don't. That is what this post is all about. That none of us do and we try different things that might work based on our child. I don't know if vaccines, genetics, environment or a bunch of others factors cause autism. But telling someone they are wrong and "it is just what you want to hear" is rude and condescending, and turn other people off from anything you might have had to say or any good points you have immediately. Just FYI.
No, Carly, it's just what you want to hear, is all.
You are very welcome! 🙂 I wish I had more answers, or more concrete answers (wouldn't that make parental decision making so much easier! 🙂
Thank you, Bek. Your post makes a lot of sense, unlike Anonymous's.
My feelings on the vaccinations don't cause autism thing is that maybe they don't. Maybe they do in some people. Maybe they don't. Maybe, in general, they keep the majority of people alive and healthy. But not everybody is built the same. The fact remains that there is no one-size-fits-all or even one-size-fits-most treatment or trigger… Everyone is different. I think one of the most exhausting but necessary parts of raising a kid with autism is to keep reading, keep talking, and keep trying to find what works for their kid, themselves, and their family. One size rarely fits all…
As far as the comment author re: stings. Perhaps I am reading your post wrong, but the comment you replied to says nothing of "protecting her child from stings"… The author of that comment just posted her thoughts but didn't mention anything about keeping her child from a jab. Are you referring to shots as "stings"? Or is this just an arbitrary sort of an example, like "widgets" when used in a general example of an item or product? If you are using "stings" as a synonym for vaccines or shots, I think that's rather condescending to an individual who poses a "what if?" question. I honestly don't know of anyone that keeps their child from getting a shot to prevent them from the pain of the IM injection… Also, as a person with autoimmune disease that was triggered by a specific event, and also as a person who lost her cousin to a bee sting (she spent 5 decades without a problem with bees), the example just doesn't seem to fit if you are using it as a parallel to vaccines.
Yes, human beings are indeed marvelous, intricate, and fascinating creatures who have evolved and adapted in some mind-blowing ways. I have to say that one-size-fits-all does not apply to everyone. Most? Perhaps. But not all. Especially if you consider that children are not raised to adulthood in a controlled environment, nor have human beings gone from our beginnings to where we are now in one location, with the same stimuli, same environment, same societal norms/mores, and with the same organisms around them. There is diversity. I believe the author of the comment you replied to, and this blog entry about Autism Daddy's experience and thoughts speak quite well about the fact that one size does not fit all.
As an adult with autism, raising a child with autism, I'm not looking for a cure, I'm not saying that vaccines directly caused his autism, or my autoimmune disease. We do have a genetic enzyme disorder(G6PD Deficiency) that had an evolutionary purpose (theorized, of course) and still exists in a large percentage of the world (and is under diagnosed here in the US due to ignorance and stereotyping) and has only become a (on more than one occasion near fatal) liability when mixed with modern medicine and various foods and additives that are pervasive in our modern society that would have been more likely to have been avoidable by our ancestors. Perhaps that gives me a different perspective on the idea of evolution and attribution of illnesses and symptoms.
Don't worry it's not the vaccines. We are marvellous biological entities and we have spent a couple of hundred million years evolving to understand two things:
1) Stings are bad, keep away
2) Stings can have magic (poison) effects
We have evolved to attribute illness to 'stings' happening up to a few months before symptoms. It is very understandable that the suspicion cannot be shaken intuitively.
Your intuition is working correctly, but that doesn't mean it is right and I hope I've explained it in a helpful way.
You are doing really well to protect your baby from stings and your suspicions are healthy and protective but please believe me if the numbers don't make sense to you.
I've also come to realize that there are those times when we think we've found something that "works", only to be proven wrong. IE: we think our little one may be talking better only to realize he is going through a time when he has been using delayed echolalia for a while-my oldest dtr will tell me, "Mom, that is tv talk". Then just like that! Boom! He will stop, and we never hear it again. And it seems like in our house we have so many of those circumstances, yet I have yet top figure out why. It varies in different areas of his little life. You would think I would learn to hold back on my hope that we are making progress each time, but I don't. Everyx I think we have taken a step forward, a few wks late it stops and we don't see it anymore. I don't understand what is going on here. Everyone tells me I am wishing too hard, and seeing things that really aren't there. Even his therapists hv gotten to the point where they just look at me and smile now when I tell them "he can do this and that now!" But aren't we supposed to look for the good??? 🙂
If I were you, I would either stop every therapy and just stay with my child trying to reach to him in my own way–but stay with him, not let him to himself (a month or two); or change that therapist. If she doesn't believe in your son, if she's not optimist about what she can get from him …. how can she get anything at all? We need enthusiast people working with our kids, not people who ust want to get paid for it ….