Autism Recovery is Not for the Faint of Heart
Soon after my son’s autism diagnosis, my wife and I were receiving advice from a DAN! Doctor helping our son. Transdermal glutathione and something very smelly called TTFD were prescribed, and we were told to rub each of these creams on his skin every night.
“How long do we need to do this for?” I asked.
“Six months, maybe a year,” came the doctor’s reply.
“A year? Are you kidding?”
I couldn’t believe it, what an inconvenience!
Those of you who are biomed veterans are already smiling. Five years later, I see the world a little differently, and I have this to say to all parents battling autism:
This job of recovery ain’t for the faint of heart.
Yup, I know it’s coming, parents who will complain and say that somehow I am blaming parents who don’t try hard enough for their child’s ongoing autism. I’m not. Really. Autism is a huge challenge. We all do the best we can…
Some people’s “best” just happens to be better than other people’s “best” -- and that’s the damn truth.
To a person, they are fighters. To a person, they are outside the box thinkers. I’m sorry if you don’t like what I’m saying, but, again, it’s just the truth.
Here’s another guarantee: fighting like hell and thinking outside the box and never giving up doesn’t mean your child will recover. But, it sure as hell raises the odds.
I’ve heard parents say, “I tried biomed.” The devil remains in the details. I always ask the same question, “How long did you try it for and what did you do.” I have found, nearly to a person, that the people who claim they “tried” biomed did very little for a very short period of time. The wanted a magic bullet, they didn’t find one, and they moved on. Does that somehow mean the rest of us shouldn’t keep fighting?
To read Liane Kupferberg Carter’s piece HERE in the New York Times is to come face to face with one of these parents I’m talking about. Her article, titled “Cure Du Jour” is a cynic’s paradise for justifying non-action in treating autism.
It’s distressing and hurtful to hear McCarthy say her son is cured because she “was willing to do what it took.” McCarthy, who describes herself as one of a tribe of “warrior moms,” seems to imply that if our kids are unrecovered, it’s because we didn’t do the diet right, weren’t willing to let doctors inject our children with unproven drugs, or somehow just didn’t love our children enough…I don’t doubt that McCarthy loves her son. But the vast majority of our kids are not going to be cured. It’s time for the media to stop giving airtime to celebrities with no medical credentials who peddle unrealistic hopes to families dealing with a devastating diagnosis.
My first reaction to Ms. Carter? I say grow up and quit crying. You made your bed, deal with it. If you’re happy for the way you dealt with your son’s autism, you wouldn’t be writing this article. On a level, you just want us all to go away. I get it.
Something in my son’s body is not right. Five years of biomed, and I all I see is improvement. I’m sorry that in the year you claim to have used biomed that you didn’t see enough to keep going. I did and I have. I’m a fighter, and so is the beautiful woman I married. When it’s my time to take the dirt nap, the only thing I really care about is that I can look in the mirror and say I never, ever stopped fighting for my son. When he looks in my eyes, he tells me the same thing.
Keep fighting, parents. Don’t blame yourself for what you haven’t done. Just get up off the floor, wipe away the tears, pull the knife out of your heart for a moment, and keep swinging. It’s never too late, and you just may land the perfect punch.
J.B. Handley is Co-Founder of Generation Rescue.
Well said, J.B. The biomed approach is a grueling one; people who believe that good intentions and valid excuses can take the place of effectively executing the program are up against cold reality, and for them success will require a lot more luck than for those who more successfully get it done. Say it with me-- Life Is Not Fair.
The autism support community is a warm and inclusive one, and largely driven by loving mothers who do not tend to see things as a fight. You're probably going to get some replies that call this message divisive and such, as if you are somehow responsible for reality because you called it out. But bear in mind that messages like this are important to many of us, who need to be reminded that autism doesn't give a damn how tired we are, how overloaded we are, or how financially pressured we are-- autism demands that we consistently and correctly treat the disease, regardless of other factors. And even then we are guaranteed nothing, of course, but as you say you'll at least know you did what you can to help your cause.
Posted by: Chip Seraphine | September 11, 2010 at 05:37 PM
I hope you are talking at me and not to me. We all get frustrated and angry and have to just get things off our chest. I sure do.
I am sure 100 percent that in my family's case there is some sort of inflammatory disease going on in their cappilaries all starting something inside the cells messing up the energy cycle. All Evidence in our case points that way. Vaccines caused this inflammatory disease. So we are fighting it. It all depends on just how bad the disease is if we can win. It all depends on if our own body's immune system can switch off.
Think of rhuematoid arthritis. They struggle to get help from medical doctors and it is hard becaue it is an autoimmune disease. Think how hard it was for the gay community to get help with AIDS it also is a disease that involves the immune system, These patients all take unproven treatments, NSAIDs, and still it is a shell game of who will improve a lot or just improve a little or not at all. But no one with rheumatoid arthritis just gives up and does nothing, they have to keep at it.
Posted by: Benedetta | June 12, 2010 at 10:17 AM
JB said - "Here’s another guarantee: fighting like hell and thinking outside the box and never giving up doesn’t mean your child will recover. But, it sure as hell raises the odds."
Amen, this is also true for any parent. Kids don't raise themselves. It's a parent's job to do everything they can, the difference with our kids diagnosed with autism is that it's hard to find support in our efforts, so many think there is no hope of recovery, doctors, teachers, therapists even. It really is up to us and yes, unfortunately, there are no guarantees. But then that's life.
Posted by: bensmyson | June 12, 2010 at 09:35 AM
Have you any idea how hurtful and mean-spirited you are? Calling parents of unrecovered children lazy and stupid and negligent?!? My child has a chromosome disorder, literally, a one of a kind specific unbalanced translocation that causes a host of medical and developmental issues. But he "looks" like he has autism.
I am educated, have been a social worker and a special Ed teacher at a private school for kids with NVLD/ Asperger's. And I have been diligently making my child's food from scratch since I stopped nursing. And I have him in 5 kinds of therapy. And he has actual RNs as his 1:1 while I work, because I fought tooth and nail and refused to take 1000 no's for an answer. And do you know what? My child is NOT cured. And as he gets older, although he makes progress in some areas, he loses ground in others. He actually has progressive hearing loss. Who ever heard of that in a 5 year old? He LOST his language at age 2 when I was already doing the diet.
So when people act superior, and assume that parents of unrecovered children give up too soon, or don't try, or are lazy, negligent, and stupid...well, thanks for pulling the knife out of your heart and stabbing it into mine. I hope your superiority keeps you warm at night.
We are all in this together. How dare you divide us?
Posted by: Dawn | June 11, 2010 at 11:15 PM
Well said JB.
I found the hope in reading about kids getting better got me started and now watching my son keeps me motivated. He's the strongest person I know and I owe it to him to promote wellness and health in his body. It will be the only way he will be available to learn and live.
We were lucky. Within 2 months of diet and supplements, Matthew stopped having tantrums. It was enough to motivate everyone around Matthew to keep working and trying.
Autism is like anything else in life - you have to decide what/how you'll do things and own it. When Matthew is 21 and having to face life as an adult, I will know I did everything possible to get him to that point.
Posted by: Ali | February 07, 2010 at 11:25 AM
"When it’s my time to take the dirt nap, the only thing I really care about is that I can look in the mirror and say I never, ever stopped fighting for my son."
"Just get up off the floor, wipe away the tears, pull the knife out of your heart for a moment, and keep swinging."
Thank you!! This is exactly what I needed to hear at this moment.
Posted by: Catherine | February 05, 2010 at 02:04 PM
Wow-awesomely stated. I remember when I started fertility treatments and assumed that since I was a "B/C" student, that I would not be in that .002% that could not get pregnant. Well, guess where I ended up. I think someone was trying to prepare me for my son's diagnosis and treatment - because he ended up in the percent everywhere that protocols did not work. Thank God for my awesome doctors who led my husband and I to find many of the keys (not magic bullets, just a set of keys all turning in unisom) that turned him around. You are right, we may not find them all or find them all at the right time, but the fight to get up one more time that we fall down is what success is all about.
Posted by: Julie Stewart | February 04, 2010 at 08:43 PM
AMEN!!! GREAT ARTICLE, ACCURATE AND INSPIRING!!! Beautifully written, love it! from one 'Warrior Mom' who definitely keeps on going and never stops!!!!
Posted by: Joan Leach | February 04, 2010 at 03:14 PM
I remember at a DAN conference, one of the speakers told us we had a "mountain to climb- and we can't just take a helicopter to the top."
Although we still have a long way to go, after years of supplements, transdermal creams, B12 injections, anti-yeast treatments, GF/CF diets- which invoves lots of special shopping and cooking two meals-instead of one!- for our family of eight, numerous doctors visits (not covered by insurance), lots of blood draws for labs, etc. etc. etc., we now have a son who
1.)sleeps through the night (he didn't for about three years)
2.)is fully toilet trained with normal stools (after years of diarrhea followed by severe constipation)
3.) No longer gets "mystery rashes" all over his body, along with oozing, red sores around his mouth
4.) has improved vision (after years of looking out of the corner of his eyes and holding things close to his face)
5.) is generally calm and happy (after years of screaming, headbanging, and literally flipping furniture over).
Although the brain damage is still evident, perhaps the next step is HBOT to heal lesions in the brain caused by mercury/viruses. Expensive? You bet. A pain in the butt? You bet. Give up? Never.
Posted by: janet | February 04, 2010 at 07:04 AM
My idea is "if you do nothing; nothing will happen" If you try everything; there is at least a chance. Never give up. Think quality of life. For us it was the ability to get into a car and not hear horrible screams the whole trip. Just that thought kept me going. Every year I have said maybe just another one. Almost 7 yrs later my daughter is a recovered kid. Not only can she ride in a car but she is looking forward to driving a car. (this is just an example of the difference) I know its hard and its a long road. And it is like any other medical procedure: some get well; some get better; some have no changes. I wish everything would work for everyone. God bless you all (Thanks for all the wonderful articles too)
Posted by: n | February 04, 2010 at 05:01 AM
Love the article! :) We just have to keep fighting...everyday I feel like giving up, but tomorrow's another day...
Posted by: Crystal | February 04, 2010 at 02:03 AM
It took thinking outside the box, being resourceful, and being a fighter to treat my kids for Lyme. It was a lot easier than treating for autism, though, since Lyme is just one of the many component of autism.
I noticed that many of the good Lyme doctors successfully treat autism as well.
I'm pretty sure my kids would be autistic if I had vaccinated them. Because they had some of the symptoms of autism just from Lyme.
Posted by: Kristina | February 04, 2010 at 12:37 AM
I am one of those parents that has not given up nor will I ever give up on improving my child's life. He has autism and I know why- he has a spontaneous genetic deletion on the 22 chromosome involving the Shank3 gene. Why did one pair of his chromosomes spontaneously delete during mitosis? Was it environmental? I don't know and that needs to be studied, but what also needs to be looked at is how do we help those already impacted with autism? Fortunately what I find exciting is the current scientific studies looking at specific molecular pathways of these known targeted genes. This information is providing warrior parents like myself the actual sword to be a part of the cure for autism and related disorders.
Posted by: hope for the healing | February 03, 2010 at 11:49 PM
Fantastic article, J.B.
I never thought I'd join the ranks as a 'veteran' mom, but almost five years later, here I stand. It's been a long process but peppered with little wows that keep me going. They are truly huge feats and worth celebrating. Just today, Ronan blew through a straw. We finally found a speech therapist who could get past the disabilities, the sensory issues, the attention issues. I watched a magical moment today when Ronan mimicked her and got all the motor planning steps ready--he blew out instead of sucking in. He's seven and finally got the concept. That's a Mt. Everest wow in my book.
Thanks for all you do. I'll be right here fighting and celebrating along side you.
Posted by: Cathy Jameson | February 03, 2010 at 10:52 PM
Will the NYT print an equal-time essay from a middle-class non-celeb "warrior mom"? I'm not holding my breath.
This woman reminds me of mothers with a 100 pound 5 year old who whine that it's not their fault, he just wants to eat macaroni and cheese all day. Selfish. And lazy. Doing what's easier. Yes I'm judging.
Posted by: julie | February 03, 2010 at 09:48 PM
What would you say to the warrior moms and dads who may have (*just take a deep breath and bear with me here*) done MORE than you? Worked HARDER to recover their child? And have seen little, if any, results? Impossible? Unthinkable?
What would you say to the concept that the cause of their child's autism may be 100% genetic, or much more complex, and still they face each day with determination, optimism and hope, pursuing the ever-evasive results you have been afforded by the grace of God as much through your sheer determination, that led to your child's steady improvement while they saw none?
You're right - everyone's "best" is different, just as every child's autism is. Let's celebrate the progress each child has made, without placing parents on pedestals while throwing others under the bus. That is equally as destructive as parents without hope who's "best" does not match the idea of your "best."
Posted by: Parent of Recovered Child | February 03, 2010 at 08:07 PM
Everytime I think this (autism, dealing with, treatments, etc.) is grueling I think about my son. What he deals with day in and day out is 10 times harder. What I am doing is easy compared to his efforts.
What I cannot fathom with the NY Times article and the commentors is how much "its all about me" there was.
A quick reminder: parenting is not about you. It is about your kid. My biggest issue is this if you don't bust your ass now - who will take care of your kid when you are gone? (and that Jenny McCarthy did not cause you this angst. Autism did.)
While I am preaching to the choir here I have always just don't understand (but will always try to) families who think treating autism is hard. My crass answer is this: changing hairy butts diapers is harder. Whats your choice?
When I am dead and gone I want my son to not live in an institution but by himself as a taxpayer. Isn't that what we are supposed to do?
Posted by: Lisa | February 03, 2010 at 07:45 PM
"If you’re happy for the way you dealt with your son’s autism, you wouldn’t be writing this article." Good point, J.B.
The New York Times author and the people she purports to advocate for sound like the government "asked and answered" clique. Employ limited approaches for brief periods, then give up and assuage your unacknowledged guilt by announcing your rationalization.
We are all only as good as our biochemistry. As parents we must know what is going on inside our children -- their physiology, their body chemistry, their body burdens of toxins, their sensitivities and genetic predispositions.
We have to try to help our children maximize their health, potential and happiness. To paraphrase an attorney whom I admire, "Participation may not ensure victory, but giving up WILL ensure defeat."
Posted by: nhokkanen | February 03, 2010 at 05:41 PM
I am extremely encouraged by such stories of commitment and courageous love. It's been a tough few days with all the news in the media and this has lifted me off the floor.
Posted by: bensmyson | February 03, 2010 at 04:51 PM
At least the New York Times is willing to publish the words "devastating diagnosis" in relation to autism. That's progress, though the rest of the article is the same old rehashed mainstream media garbage.
Excellent post, JB, as are the comments that follow.
Posted by: never give up | February 03, 2010 at 04:30 PM
I love Tim's Rubik's Cube analogy. That's exactly what it feels like to me. I deeply feel that almost all the kids could recover just like a Rubik's Cube that can be put back together. BUT ... I feel like we do not have anywhere near enough information for most of the kids to recover at this point. If some kids are responding dramatically to diet or other treatments it means that autism is recoverable and as a society it is our responsibility to look for treatments that will help the other kids. The gut, in particular, is poorly understood. Many kids have obvious gut problems but are not responding to current DAN! treatments. We need research to find out why and to find out how to fix them. The research money put towards autism-biomed treatments compared to other diseases which are even more rare is like comparing a raindrop to an ocean. Personally, I do not think that people will start to believe that autism is really recoverable until they see more kids recovering from treatments. The truth is that many kids will not make significant progress with the biomed tools we have at our disposal today even if they follow them perfectly. I don't want to have to wait until my son is a grown man and I am an old woman for new treatments to come around.
Posted by: MoreBiomedNow! | February 03, 2010 at 04:21 PM
JB you said it all. When my grandson was diagnosed at age 2 1/2, I found your site generation rescue. I live in the Portland area and your wife's name was on the site, I had no idea who she was or who you were at the time. She responded immediately. She gave me the name of doctors to try and different approaches to take. My grandson is now 4 and he is improving all the time. Your wife planted the seed of knowledge that helped us get a start on healing my grandson and to this day I am eternally grateful.
Posted by: Nora | February 03, 2010 at 03:03 PM
I spoke to Bernard Rimland about fifteen years ago. I was asking him about vitamin B6 supplements, but he was telling me about casein free diets, as well. I remember him saying that roughly a third of the children they'd looked at improved somewhat, a third a great deal, and a third not at all. I don't remember precisely if he was referring to the use of supplements, diet, or both.
I put my own child on a casein free diet at that time. She was about three years old. I remember thinking how very difficult it was. It's not just milk, it's all sorts of products on the grocery store shelves that contain casein. At the time, if anyone was aware of gluten being problematic, I wasn't. Now, when I think back on how difficult it was to keep my child off of casein altogether, I think it must be next to impossible for a parent to go GF/CF. But what won't a parent try to help their child when he or she is sick?
And yet, if they are able to take these draconian measures and stick with them for any length of time, after all of their hard work there is still a one in three chance that they and their child have gained nothing. How hard it must be to learn that your efforts came to naught. How easy, I sometimes think, to just pooh-pooh the whole idea as nonsense, if your child was the tough nut who wasn't helped.
I once knew a woman whose child has autism. I remember meeting her son for the first time, a child with rather severe autism. We wandered around the park for the morning, and her boy seemed mildly interested in his surroundings though did not interact at all with me or my children. He was very quiet. Then we stopped for lunch. I remember this woman pulling out some tupperware containers of what looked to be carefully prepared foods, and they both ate. After we were finished, she pulled a Hershey bar out of her handbag. I've never understood why she did this. I don't know if it's because she just really, really wanted a piece of that chocolate herself and couldn't bare to eat it in front of her son, or if she wanted me to see what would happen after her son ate half of that bar of chocolate. What I saw was striking. Within ten or fifteen minutes of eating that chocolate, her son changed from unengaged but quiet to highly agitated and upset. Of course I suppose it could have been anything he'd eaten besides the chocolate, but even she admitted that this is what happens with milk products.
I don't know how serious she ever was about the GF/CF diet. Perhaps that was just a rare fall off the wagon. I expect she eventually gave it up but I don't know . Either because it didn't work, or it was too difficult.
I do know this. She was one of the people who censored me, when I attempted to speak out about what happened to me in front of that benefit concert, when I was told “stop handing out your vaccine flyers, leave, or we'll have you arrested.” She would not allow me to post my words on her local support forum. I've often wondered at that. Why she would behave that way. I've wondered if the failure of the diet had something to do with it. Not that I judge her for failing with the diet, if she did. But it's harder for me not to judge all of the rest of it. However bitter she might be that her child wasn't one of the lucky ones.
Now, there's one thing that I have to take issue with you on, JB, as much as I hate to cause I have lots of respect for you. You really think most employers like 'outside the box' thinkers? I have to say I'm skeptical about that.
Posted by: Bad Apple | February 03, 2010 at 02:36 PM
It is grueling! It is worth it. You have to be single minded. I eat, sleep, and breathe recovery. I don't go places or have many friends anymore but what I do have is a beautifully recovering 4 year old daughter. I regret nothing.
Posted by: recoveringchloe | February 03, 2010 at 02:21 PM
"If you’re happy for the way you dealt with your son’s autism, you wouldn’t be writing this article."
Thanks JB. We parents like little jump starts like this.
MAKE AUTISM STOP
Posted by: email@example.com | February 03, 2010 at 01:55 PM
JB, you are an inspiration. Our son battled chronic diarrhea for a year. stopped it with the help of Dr. Krigsman and diet changes only to have chronic constipation for another year. After looking under every rock and trying every conceivable biomed, herb, traditional remedies etc., I am proud to announce, my son at age 4 1/2 can now go to the bathroom by himself on a regular basis. The smile on his face makes up for all the tears, hard work and self-loathing. At my lowest points, I often think about Winston Churchill's famous speach...never give up, never surrender. Thank you for this post
Posted by: Odysseus | February 03, 2010 at 01:46 PM
I work for a pediatrician specializing in integrative medicine/autism (he's been to DAN conferences, but hasn't put himself on the list or gone every year). I have now seen somewhere between 200-300 parents. We have MAYBE a 10% "compliance" rate. I feel there are many reasons for that:
1) Someone in the family is a naysayer, and isn't supportive, emotionally, time-wise or financially
2) The parents know that once this can of worms is opened, that it will be hard work and expensive and they don't even want to see what the first intervention will do because then they will have to keep going
3) Like you said, they thought there might be some magic pill
4) the parent's own issues. A mom dealing with her own autoimmune/stress issues over this situation can barely pull themselves together daily, much less research, find the money, cook the food, dole out the pills, send the lunch, etc.
5) a lack of being able to "get their mind around it" as I cannot get my mind around doing therapy with my son (RDI for example)...
6) they try and nothing happens fast enough (this is with the 7+ year olds)
It is disappointing and frustrating, especially when I know how much easier their lives will be and how much better the child will feel. Not to mention the time and resources it took to share this whole thing with them. They get a free 2 hour consult with take home materials and tests.
I personally hit it hard and never looked back. My son's special ed teacher in a normal ed classroom just quit working with him because he doesn't need her. but I also saw immediate results with diet at 3 years old. In 3 days he was a different child. Not everyone will be that lucky. It was all I needed to fight and scream and beg for every support and dollar i needed to continue.
thanks, JB for this article!
Posted by: anan | February 03, 2010 at 01:40 PM
thanks JB. as my father would say-you did not make your bed and now you have to sleep in it(for those unwilling to choose our path). you have inspired me over the years to never give up. i have not found that magic bullet. but there are magic moments that come from never giving up to go towards health and normalcy for my son. like last week when he told me i did not need to tuck him in anymore(unless it helped me). ouch-definitely a knife in my heart moment. but don't we want 12 year old boys to pull away from their mommies and gain independence. i know that's why i do biomed/homeopathy/etc. i want to know when i am gone-he will be okay and have his own full life. roz
Posted by: Roz Young | February 03, 2010 at 01:37 PM
I broke him and I'm damn well going to try to fix him.
I try with love, humor, fury, silliness, sometimes boredom, guts, weariness, rage, exhaustion, terror, a broken heart, sometimes in agreement with my husband, sometimes not, in community and in loneliness, with jealousy, with a hunger, in denial, flat with the endlessness of it, joyful over new progress, broke, with grace, with bad breath, with an open heart, worry, and doubt.
To those who say it won't work. I say watch me. To parents who don't want to do Biomed. I say Don't.
There is a little boy in there and by God I'm going to pull him out.
Posted by: Alison MacNeil | February 03, 2010 at 01:35 PM
Thank you so much for writing this because I was so depressed and ready to give up. You are my "Mickey Goldmill" in my corner and I am ready to go one more round with the undisputed champ named "Autism."
Posted by: Elucidatus | February 03, 2010 at 01:30 PM
This is verging on hurtful.
I worked for my local ASD support chapter and have met: the spectrum of parents, incomes, education levels, life experiences, personalities. I have met the spectrum of children's severities at different ages, symptoms, issues, diagnosis stories (this one is key - as there are some terrible docs out there leading people on goose chases for years), treatments (and we all know how long this list is - from the biomed, to the mainstream mito/autoimmune docs, to the pharmaceutical route, to all the different forms of ABA/RDI/VB/music therapy/OT/Sensory/neurofeedback/cogmed/you name it), or the complete lack thereof as far as treatment, etc., etc., etc.
I was horrified, at first, by the amount that were NOT doing the biomed. I got over it, as I have seen kids fly who did NOTHING. I mean it, NOTHING!!!! I have seen kids fly whose parents did EVERYTHING. I have seen kids go NOWHERE whose parents did the range of NOTHING to EVERYTHING. I have seen countless stories of the in-between on any variable.
Our kids are all different - just look at their physical symptoms - Head Circumference explosive overgrowth/normal head growth/mini-heads. No gross motor problems/bilateral coordination/extremely uncoordinated. Constipation/Diarrhea/normal stools/variable stools, tons of alergies/no discernable alergies, obvious autoimmune/not so obvious, the list goes on and on. And, do not forget the chromosome kids, and some duel diagnosis kids - Anglesman, Rett, Fragile-X. Our kids are NOT all the same.
I know two mothers who "recovered" their kids by "round the clock ABA/generalizing all the time/and no biomed" - who ran our parent support group for a while. They were obnoxious Catherine Maurices ("Let me Hear Your Voice").
They would seriously spout that - if only you were a perfect mother like them - you too can have a child who recovers. And, if your child wasn't responding - you weren't generalizing enough, you weren't perfect enough. It was the most hurtful, mean and uneducated pile of bunk.
Our son is doing extremely well and is practically indistinguishable at first blush - but still ASD. We have bucked doctors, done VB/speech/biomed/you name it. Outsiders (NT moms) say "oh, how wonderful you are, look what you've done, you are the best mother" ARRGGHHHH!!! That is when I go on my shpiel that it is NOT that simple. There are soooooo many variables at play.
NO!!!!! I am not a "good" mother. That is c--p. What is on the flip side of that coin?
I am a FORTUNATE mother! I am fortunate that I was given an amazing education. I have traveled the world, had incredible and varying experiences. I was taught to question. I was taught to argue. I was taught to defend the undefended. I have a husband who has a decent income (meaning I can afford to stay home much longer than we planned). I have an extended family who is willing and able to help out financially to pay for our silver plated program (not gold, there are more things I'd like to do). I never stop - and am still searching for ways to help my son (but this is only an option - because of our situation).
But MOST IMPORTANTLY, I am FORTUNATE that my kid's ASD body symptoms have responded to all sorts of interventions. That is the single most important variable. We are very, very lucky.
Could he be even better if we zigged instead of zagged? Of course, but who cares. I am fortunate and I have stopped beating myself up and blaming myself as to why he isn't recovered. But he hasn't recovered because I am a "bad" mother.
I firmly believe everyone is doing there best. Everyone has different circumstances, life experiences, a child with incredible differences.
The phrase: "You've met one person with autism, you've met one person with autism," couldn't be more true.
Whoa!!! No one calls me a "good" mother and gets away with it, as that implies my sisters-in-arms are "bad" mothers. No way. Not on my watch.
Posted by: KHW | February 03, 2010 at 01:28 PM
The first time I went to a DAN conference, I freely admit I had a guilt sword in my chest. I wasn't doing enough. Then, when I did enough, I wasn't enough. Simply said, all our kids have different immune capitals, if not different timings and exposures to things that exasterbated an underlying pathology. I can't blame a mom for trying for years to fix the wrongs done. That said, some things, will never be fixed. I onced asked the great William Walsh at Pfieffer this question once...and that was, if mercury was in the brain at one time, isn't it permanent damage? He said, yes, in some cases, but not all. Think of it, he said, like a tornado ravishing an Oklahoma town. Some homes get totally destroyed, while others are spared. You can rebuild things, but sometimes, things are just permanantely lost. I have accepted that. However, when I see my son seize (and believe me we had a whopper weekend in ICU last week), I cannot help to feel, either we are doing something horribly wrong, or maybe I am running to many experiments on him? But, if I don't do certain things, I know I will always question, whether or not he could have had a chance. I have heard of people mortgaging homes, selling their furniture, moving with loss of equity, just to get a school district, an insurance coverage, something to get their child better. Autistic parents are the most unselfish people I know. They would give up life and limb, sometimes their own marriages or futher retirement dreams, to get their children better. This of course is natural to do, when you see that our children are in such pain, and, sometimes life threatening situations. That said, I have had to balance my autistic life, with my NT children's lives. I have had to lay down one supplement or another for a family vacation, or to just chill out from autism for a while. I have had to balance my civilian friends without autism, with my friends with autism. I have had to budget, and miss out on cruises my friends take all the time, and large large fantastic homes, or vacations or a nice car, for treatments for my kids. We all have the same stories of juggling our lives. Yes, JB, it is hard to not be faint of heart. There are days when I just want to crawl under a rock. Other days, I am a superwoman, and I know exactly what my kids are ingesting, eating, and timed just so. But then I sometimes reflect, that I have not saved enough money for their futures? What a hard balance to strike? That said, again, I accept my kids as is, but I wish for their health, and work on their health every day of my life. It is known that mothers of autistic chidlren don't live long, furthered by research that our "telemore" lengths are shortened. I attribute alot of that to the care of lifetime autism, but, I also attribute that to the similar biochemistries in their children, in which the mother herself is either dealing with an autoimmune disease, and or oxidative stress just like their children. Fathers are in this too. They have to work DAMN hard to pay for all of this stuff, and, at times may appear a little distant from the scene, only because they know their wives are going to town on autism. I kind of like that....because my husband trusts me and my research. But, sometimes, I prefer him to step in, and to step up. I especially think that is important with initial appointments and comprehensive medical appointments, shows a united front, etc. So yes, faint of heart is not in our vocabulary...we have been through every magical cure treatment and promise there is for the last twenty five years. We pace ourselves. We don't go overblown on certain things, and on others, yes. We know when to push, when we have to investigate, and when we should just wait for further research. I hope parents who have newly diagnosed children realize, this is a long haul, and they must do the same, or else they will burn out quickly.
Posted by: Kathy Blanco | February 03, 2010 at 01:22 PM
We're doing chelation (for very high levels of mercury), hormone therapy (for high testosterone and androgens) lots of supplements, and most recently the GFCF diet which also includes switching to a lot of organic products.
Most remarkable of these, at the age of 19 years, our daughter's seizures reduced by 66% after starting the GFCF diet. She isn't allergic to gluten or casein and doesn't have celiac disease.
So even at the age of 19, I say to all you people who love someone suffering from ASD, vaccine injury, mercury toxicity ---- there IS STILL HOPE for improvement and quality of life. You just probably won't get it from any pediatric doctors and you won't get it from mainstream media. They are, sadly, enablers in these crimes against humanity - crimes against our children and our families.
I agree with so many of the comments. I feel it is my responsibility and obligation to fight this assault against my child just as much as I would fight cancer or any other disease or toxic condition.
Posted by: A Mom | February 03, 2010 at 12:56 PM
I was not called a refrigerator Mom. I came after that bunch.
I came into the scene when there was a lot of information - including junk information.
The only thing that was proven to work at the time and that being only for epilepsy and not autism and which the docs all claimed my kid did not have at the time, was the ketogenic diet. Even this proven diet was looked on with distainful negative attitude of the doctors.
Now we have: a autism website; John Hopkins has proven the easier diet to follow - the Atkins diet does work; Beranard Rimland (amongest the sea of junk science) has been proven right about the casein free/ gluten free diet; There is the websites for Kawasakis; there is a court case won that mention acquired mitochondria cytopathy.
With all this: I have no patience with parents that will not try diets and supplements. If they care about their kids they will at least read and study up on it.
Not to do so as far as I am concerned is child abuse or rather NEGLECT.
I know what these parents are waiting on - they are waiting on their regular doctor to come into the room and say - for best results follow this diet. They are not thinking for themselves, they want others to think for them because they have faith that the established medical community knows what they are doing.
So you have lazy people, that is what it amounts to at this point in time!
5 to 10 and even 15 years is not all that long when you are raising a child - to try this stuff.
Posted by: Benedetta | February 03, 2010 at 12:36 PM
I don't understand how a person can claim to love their child, and yet give up on that child. To me that is not love.
When I'm 99 and son is 60, I'll still be fighting to heal him, if God lets me live that long.
Posted by: julie | February 03, 2010 at 12:14 PM
I don't think anyone who'd really delved into the vast complexity of cellular damage in autism and the corresponding treatments could be gripped by envy over someone else's child's progress. I see children who are improving far more rapidly than my own and I simply wonder "Are they doing something we could afford to try? What is it? Is there an issue of timing or combination of treatments? Does their child's illness have a different profile than our children's?" And I ask questions. And while asking questions, I frequently learn that the people having the most success are the ones who tend to delve deep into the science-- probably both because they ARE having such rapid success (it feeds itself) and because that's their disposition. I walk away with more than tips for remedies-- I come away with more resolve to gain momentum from each small success, to get into the "marathon" mind set of this road to recovery.
Do I think that someone who's child is doing better than mine is lying or bragging or trying to make me feel bad? I'm not an envious person myself; I don't do things to make others feel envy, so I don't assume anyone else does either. Competition seems an empty motivator to me-- it can't sustain anyone for that long, not for something this hard to do. It doesn't surprise me that those who most engage in shadenfreud over others' failures or try to rip apart other's success (and literally attempt to tear the whole standard itself down, as Kupferberg Carter is trying to do) are not going to be the most committed people.
These are the ones who want fast, easy success with their kids: after all, their children are only one part of their "competition front". There's always the loft to keep niftier than the neighbors', the butt to keep trimmer-- so much to do when life is all about who's better than and worse than.
Contrast that to the real unsung heroes who face slow progress with their own children but have learned everything they can and are still passionately willing to share. I've seen parents who display no wistfulness or envy towards others who progress faster-- even using their own recommended methods-- because they understand that each child is different, that each illness comes at different depths and complexities.
Posted by: GG | February 03, 2010 at 11:39 AM
Thanks, JB! I attribute my passion to having it in other areas - used to be politics, civil rights, job, etc. When my son started having problems, nothing else mattered and I put that passion into my boy. Yes, I'm not as proficient at my job as I used to be, but today I have a son who is assimilated into his Kindergarten class, has had 2 weeks of "green card" behavior, he's talking faster and more complete sentences, he has more facial expressions - I'm lovin' it!
As far as the literal costs - yup, I'm in debt from buying what I thought would work, some did, some didn't, some I went back to and saw improvements. Just like you go in debt to purchase a house, I went into debt knowing the long-term benefits of my son would be worth it. I can pay it down eventually, but my son needed to heal asap. It took 2.5 years, and 5 digit credit card debt, but now I'm exhaling and will work on the money problem next.
If you're new to biomed, please don't be intimidated. Get a mentor or a buddy from TACA, join the groups that give the online support (secret society to prevent the naysayers), and know that improvements will happen if you learn to understand what will work for your child.
It's not a 'magic bullet', just like the cause was not a single attack. Reach into your heart and know that recovery is happening, then ask for help. It's out there.
And I'm proud to say my son is a success story. Thank you all.
Posted by: DebinIL | February 03, 2010 at 11:27 AM
We have to do the diet. If my son gets any dairy, he's up all night and then I'm up all night. If he gets any sort of candy with dye or HFCS he's MEAN. We've been at it almost 8 years with no plans of stopping. I will always contend that DMPS was the best thing we did. My son is not recovered but he was headed down the Sky Walker path without the biomed.
Posted by: Thought Criminal | February 03, 2010 at 11:18 AM
I could write a long essay on what we have seen by staying the course. But ours is not necessarily a unique story, as the other comments show. Thanks, JB, for an outstanding job of explaining it.
Posted by: Wade Rankin | February 03, 2010 at 10:40 AM
Much of people's impression of legacy western medicine is synonymous with "silver bullet" fixes. Western Medicine today excels at emergency and mechanical medicine, both of which often see very fast results.
Just think about how you interact with your doctor. The nurse from the insurance company knows a lot more about my health than any doctor I've ever had, because she actually spent more than 10 minutes talking to me.
Anyone who actually takes a holistic approach to health and uses quality alternative medicine practitioners -- Autistic or not -- knows quite well, that lifelong health involves hard work, and more often than not, slow progress. The more complex the issues, the slower and longer it takes.
Maintaining good health for children in general involves a huge commitment on the part of the parents in so many aspects of life. Doing so for an Autistic child makes it an order of magnitude more difficult, but the reality is the same for everyone.
Medicine and pharmaceuticals will never be able to replace hard work, and personal discipline. It's always been hard, it still is hard, and it always likely will be.
Posted by: Schwartz | February 03, 2010 at 10:05 AM
I think somehow we've not been clear about what we're doing. Perhaps we've given the message that we've found the magic bullet. Maybe we do this to try and ease people into biomed without scaring them off by telling them how hard it really is. I know I'm guilty of that.
So, when other people don't see the magic bullet they quit. But worse than that, they miss the point that what we are about is the effort to make our kids healthier. People still aren't getting that our kids are sick and we're trying to heal them like you would with any child that is sick. It's about HEALTH.
So, for us ending eczema and diarrhea were just as important as anything else. Getting off the inhaler and nebulizer and monthly antibiotics; these are as much the success stories of biomed as are the increased eye contact, human awareness and communication (although I'm sure as hell glad for those too).
Posted by: Jack | February 03, 2010 at 09:59 AM
Thanks, JB. As usual, you cut through the B.S. and tell it like it is.
Posted by: Erik Nanstiel | February 03, 2010 at 09:56 AM
I concur with the title. And add one thing, this is also true for those who are on the spectrum. It is a hard and long fight against all the odds to recover yourself. But I am a prime example of what can happen when a mother is listened too, the proper supports are set in place, and the right people are there to help.
Because of these things, I have my own job in my chosen career field, my own home with two cats, a sucessful relationship with my better half, a close relationship with my relatives, etc. It took many years, and a long hard fight to get where I am now, and I am far from finished!
I am still isolated from the world. I still have to act and mimic to get across what I feel on the inside. And I have to work extra hard to communicate my feelings to my loved ones, as they are not clear without great effort.
But I am on the high fuctioning side. And I believe what I have achieved with the proper supports and a wonderful battle mama can be achieved by others who are high fuctioning if they too could just get that extra bit of help.
But there is nothing there! Nothing for them. They are no longer be accepted into the state system. They have no accsess to the services I recieve. And that is a tragedy. Because they have the potential to go so far, but no one is willing to help them!!
The road to recovery applies to all of us on the Spectrum, and all of us work hard, but as long as those who are deamed "not autistic enough" are denied services, many won't even get to begin the journey. And that my friends needs to change!
Posted by: Darian (nickname) | February 03, 2010 at 09:45 AM
The way I look at it is my child was born normal, like a Rubik's Cube with all the sides the same color. Somebody came in after about 15 months and, while I was not looking, started twisting and turning him a little each day. I did not notice at first that a couple of colors were in the wrong place, but my wife did. She mentioned it to our Pediatricians who said son't worry, they all do that, it will go back to normal soon.
By the time we realized the Peds were full of crap, we had one truly screwed up cube.
Some cubes (kids) are not as twisted, and are easier to get all their "sides" back to normal again. Some kids, like mine, were complete messes.
We have been persevering for 10 long years now. We have gotten one side back to one color, but not the rest. As soon as we try to fix another side, we mess up the one we had done before.
Thus is the adventure in biomed. Some parents are like the relentless teenager who has lots of time, energy and wherewithall to keep at it, and complete it they do. Some parents sit down with the cube and spend a little time and see it as too hard, so complicated. They stop trying and that is fine. Just so long as they do not decide that others are foolish for continuing to try to solve the cube.
Some parents are like my wife and I, who just struggle on, picking up the cube each day, trying some other twist or turn, believing, knowing that we may or may not solve the puzzle, but knowing that if we keep plugging away, we just might.
(Too bad kids are not REALLY like Rubik's cube. I always just broke them apart and put them back together by jamming the last piece in....)
Posted by: Tim Kasemodel | February 03, 2010 at 09:36 AM
8 years on the recovery path and are we are having the best year ever. To the parents of young children, don't get tied up in the "You have to recover them by age xx." There's no timetable. Set your pace and keep focused on the target. There are adults who have improved greatly using biomed. There's a habit in the autism world to jump around and leap on the 'next best thing'- I know I was there. But we have so much peace and satisfaction knowing that we have a path. Sure, we will try new things, but the constant jumping from treatment to treatment is no longer. If we stop making progress, we will look to what is out there to change direction. Until then, we will enjoy our child, sleep well knowing we are doing what we can to help her reach her potential and will hang on tight when the backslides hit. We've come out of all of them so far better than we started.
Posted by: Libby | February 03, 2010 at 09:31 AM
Wishing you very good luck, Kim.
And yes, THANK GOD FOR JENNY McCARTHY.
Which also means - THANK GOD for Generation Rescue.
Posted by: A Mom | February 03, 2010 at 09:29 AM
I'm the mother of a 4 year old boy with autism. He was diagnosed about 2 years ago. Soon after his diagnosis, I started a home-based ABA/Floortime program for him and I am very pleased with the results. This year, I made the commitment to try and understand the biomedical side of autism. I HAD NO IDEA HOW COMPLETELY OVERWHELMING AND DIFFICULT IT WOULD BE. I'm still in research mode, and I already feel completely confused. It's hard get a straight answer from anyone on this subject. Since we are damn-near broke and insurance doesn't cover anything autism-related, I'm on my own. Plus, everyone is telling me that all these treatments are temporary and a complete waste of time.
At any rate, I will toughen-up, and implement some biomedical strategies. I look at my beautiful and intelligent little boy, and I think, "How can I not try?" How can I hear of people having success, and not try it? I don't know if I'll be successful or not, but I will try my hardest. Everyday I will try to improve my son's quality of life. Wish me luck!!
Posted by: Kim | February 03, 2010 at 09:09 AM
Thanks for you article. We've only been at this for a few months and have seen amazing progress in our 2 year old. Six months ago I tested him-for the third time-to see if he was deaf. Now he comes running from across the house when I call him, with arms open, great eye contact, and a huge smile and is even saying some words. Granted, we have a long way to go and his behavior is not the same as his NT twin, but I thank God every day for Jenny McCarthy and the awareness she has raised. We are just beginning, but already his severe reflux is gone-it disappeared 2 days after going GF/CF, his distended, taught belly has softened considerably after treating bacteria in his gut, and he doesn't wake up pacing his crib every night for an hour. That's real progress even our previous pediatrician, who doesn't believe in any of this, could not ignore.
Posted by: Helen | February 03, 2010 at 08:45 AM
I have two daughters 11 and 13. We started at 12 months with the 11 year old and 2 1/2 with the 13 year old. Are either recovered? Nope. My 11 year old has made tremendous progress. She now is able to talk, read and write and loves being around other kids even though she is socially very awkward. She's a fighter and absolutely one of the most determined kids you'll ever meet. My other daughter not as lucky. She still only has single words but occasionally surprises us and puts three words together. She is learning to read and still is not able to write. We've gone from treatment to treatment since these girls were little. I won't list all the biomed and behavioral and out of the box treatments we have done for these girls. But they have never, ever not been in treatment or therapy. We have never ever had the conversation in our house about whether it was time to stop. Quit and give up are not in our vocabularies in our house. It's not available to my oldest neurotypical daughter and it certainly is not available to my ASD daughter's. There are a few things for us that have been proven to heal and move my daughter's forward in progress. Diet helped, chelation and Heilkunst. Now we just started a new chelation protocol. Three days on four days off. Getting up in the middle of the night three nights in a row week after week month after month. It sucks. Do I care? Nope. I will do whatever it takes to help my children heal to whatever extent that is possible. For those of you that are considering homeschooling and or are just not happy with your current school situation and need a change I highly recommend the National Association for Child Developement (NACD.) We have been with them for the last 7 months. My girls have made some nice academic and oral motor progress in the last 7 months. They are awesome. And if you ever did ABA and thought that was hard and kicked your butt don't bother contacting NACD. They will kick your ass. They are intense! But they absolutely believe in the kids 100%. So if you are looking for awesome people with awesome support contact them.
Give up nope! Quit nope! Not in our vocabulary. Will my daughter's recover? I don't know? Will they continue to improve, absolutely! And I will go to my death bed knowing that I did everything behaviorally and financially possible that I could do. I will rest in peace.
Posted by: Michelle McNally | February 03, 2010 at 08:28 AM
I couldn't agree more. Every parent has a right to do whatever they think is right for their child and if they feel that is something minimal, that's their business. I find myself losing patience with people who say they want to try and recover their child, yet do not put in the insane amount of work required to do so. I have met many parents over the past few years who have moved too slow(in my opinion)and chosen not to see a DAN doctor or even do the things that DAN doctors recommend (assuming there is no money for a DAN doctor). Again, that's their choice, but I find myself gravitating away from them because I will keep running and if you can't keep up, I can't wait. I am nearing the finish line...maybe I will always be close but not quite there and that's okay...I can see it and I will continue to do whatever it takes to get there!
Posted by: Nicole | February 03, 2010 at 07:31 AM
I'd just like to say that I can understand both sides of the article. I've been doing biomed for over 2 years will very little result. We haven't stopped, but it's getting harder to justify the $500+ dollars a month we're spending in supplements, testing & consults... especially when it could go toward other therapies. I do think it's a lot easier for people like Jenny McCarthy who have virtually unlimited financial resources to pay for the top specialsits and schools, buy a HBOT and sauna, and who can devote all of their time to helping their child. I had to go back to work full-time to pay for my son's treatments, and it's a huge trade-off. I now have even less time to spend with my kids. It is stressful trying to fit in all of my son't at-home therapies when both parents work full time, and I live with the quilt when I can't get it all done. But it doesn't help for either side to critize the other... we'll all doing the best we can.
Posted by: DJ | February 03, 2010 at 07:27 AM
I'm a big believer in Biomed. I have been working on it for about 9 years. I wish we knew to start this sooner than we did. My son is nowhere near recovery and don't ever think he'll get there. But who knows what will come along to help? I don't think it's all about how good the parents are who reach recovery with their kids because I believe there are factors at work that are simply beyond our control. How much damage was done, access to people who can help unravel the issues of a particular child and yes, luck is involved.
Even though I don't think complete recovery will be attainable for my own son- I'll keep plugging away. Why? Because I have seen him make tremendous progress when we have found something that seems to undo the damage. Unfortunately, these treatments have never been long term or lasting.
But, I'll keep looking and trying to improve the quality of his life. He deserves that.
My motto: Feel better, act, learn, communicate, and behavior better.
Posted by: BiomedBeliever | February 03, 2010 at 07:14 AM