(This blog originally ran in 2012.)
I think for most of us it sticks in our minds: the first time the ‘Big A’ was used, the confirmation of our fears. For my son it came months after I had recognised what I was witnessing in him. His regression into a clinical autistic state was dramatic, my mother described it best as “watching him teeter over the edge of an abyss.” The part I couldn’t accept (and didn’t expect) was being told that he had always been this way and that I had simply missed the signs.
When I first sought evaluation for my son, it was with the intention of having the medical profession identify the cause of his constant sickness and stop the regression. I knew that his cognitive abilities were being impacted by infection after infection because, when he had ‘good days’ (and they became fewer and fewer as time was wasted), he was perfectly fine. They were the ‘in-between days’: in between vomiting, in between diarrhea, in between constipation, in between throat infections, in between ear infections . . . You get the gist. On those in-between days he would laugh and play and smile and wave and speak as he had before. But on all the other days he was high-functioning autistic, and that’s how I described him to the health visitor when I asked her to arrange for the evaluation. It took over five months for the appointment to come through. During that wasted time, he spent so many days in the doctor’s office and ER that staff began to make jokes about him having his own room. When the evaluation finally came around, he was burning a temperature of 103 degrees, so definitely not an in-between day. The NHS (National Health Service) refused to postpone, saying that failure to show would be considered a cancelation and I’d have to start the entire process over again. Another five months . . . I kept the appointment.
In the United Kingdom, childhood vaccines are administered by nurses at monthly clinics. A child does not automatically have access to a pediatrician unless he or she is seriously ill, and since the NHS still views autism as a psychiatric condition (or the child’s choice) an autistic kid may never receive any medical attention beyond five minutes with their generally clueless General Practitioner (family doctor). So, as you might imagine, I was thrilled to finally have a real bona fide God of Pediatrics involved (who, incidentally, introduced himself as ‘the baby doctor’ because as a parent I couldn’t be trusted with big words).
The evaluation took two days to complete, both days R was burning a temperature. I had complete faith that this higher intellect would observe my child and realise how physically ill he was. I knew that as soon as he took my son’s temperature, felt his abdomen, drew bloods . . . Except nothing like that happened. The bloods taken that day were simply sent away to check for Fragile X, which I already knew he didn’t have. He wasn’t born this way. Instead I was offered water from a plastic beaker, in the absence of brandy, and told that my son had low-functioning autism, which simply wasn’t true at the time. He still hadn’t regressed that far. The doctor even went so far to say, “Don’t believe anything you read on the internet. If you have any questions about autism you should contact me directly.” I never spoke to him again.
A short time after diagnosis, I paid privately to see another pediatrician on what turned out to be an in-between day. R flirted with her, took turns playing with a toy, gave her his shoes to put on, stroked her hair, chatted, and finally, as we left, said “bye” and waved. She, in return, gave him a second diagnosis of ‘unlucky.’ These things you just don’t forget.
That time was key to R’s potential to recover. If all the self-appointed demigods of the NHS and beyond had listened to what was being said, if they had acted appropriately based on the physical symptoms as they were presented, my son’s life could have been so very different. My trust in the system was so absolute and naive and misplaced. The truth is, my son wasn’t given a diagnosis at all; he was given a prediction of what he would become if left untreated. After raising the alarm I wasted a year waiting for help to arrive. Help which was never even deemed necessary, let alone dispatched.
I made R a promise: that no matter what else happened I would do everything humanly possible to take his pain away. It wasn’t until I came to America that I started to understand the full extent of the damage which has been visited upon my child. With access to proper medical testing, we were able to identify yeast and bacteria issues, food and environmental allergies, vitamin and hormone deficiencies, and an underlying mitochondrial dysfunction.
“Unlucky.”
Thanks to a combination of internet support groups, Facebook and attending the AutismOne/Generation Rescue Conference last year I have been able to identify other, more complex, pieces of my son’s autism puzzle such as CFD (cerebral folate deficiency), PANDAS and an autoimmune response to his own brain cells.
“Don’t believe anything you read on the internet. If you have any questions about autism you should contact me directly.”
What would have happened if I had done as I was told? If it wasn’t for organisations like Generation Rescue, TACA, VaxTruth, PANDAS network . . . so many amazing groups set up by the parents of autistic children to help new parents coming through diagnosis. I am so in awe of them all for marching ahead in this battle to save a generation of children — my children. I am so grateful to them for looking back over their shoulders and leaving a trail so that others might follow them. I can’t imagine what our lives would be if they hadn’t. I am indebted to the doctors and scientists who have risked everything to help us and who have been persecuted and ostracized for their efforts. The FDA and CDC refuses to acknowledge us. Mainstream medicine has turned its back on us. The pharmaceutical industry cynically campaigns to discredit us. We have no choice but to rely on each other. There is no help unless we help ourselves. The issue is where to start. For my family getting started involved an extreme, life-changing move, but apparently it doesn’t have to be that way. Who knew?
May 23rd sees the start of the AutismOne/Generation Rescue Conference 2012 in Chicago. It’s a pretty comprehensive gathering of scientific and medical minds. It’s a place to learn about ground-breaking research, new treatment protocols, dietary interventions, and therapy programmes. It’s a place full of knowledge, belief and hope. It’s the ultimate gathering of our autistic family, and it’s where calls for help will be answered. The Thinking Moms will be there in full force, hosting the Karaoke Night and doing our best to pay it forward.
~ Twonk
Someone out there in cyber apace…..please can you specifically tell me…….HOW to raise glutathione levels most easily/directly/cost effectively? HOW to diagnose pandas and treat? HOW to detox heavy metals? We cannot afford a homeopath…..but we want to know what to do for both children please please can someone email me and hold our hands through the rest of our journey? We’ve already been through so much and need experienced Moms to guide us the rest of the way. Also….,does anyone out there know if our son will EVER be able to eat soy, dairy or gluten without red ears and meltdowns? He has such a limited diet since we discovered several food categories he is intolerant to and it’s so expensive, we have trouble affording supplements or any other therapies. We are looking at a website to do fundraising to help him but that is a work in progress.
Blessings to all who may help us narrow down the healing options that may exist for our high functioning asd kids ages 8 and 4.5
Alisabeth
Lakeland Florida
Felt like being hit by a tuck. Just pretty numb. My wife and I both thought “well, he’s young, we got it diagnosed early, we’ll get him recovered in time for kindergarden.” He’s made great progress, but we’re on a bit longer trip through Holland than we suspected.
To us, though, the diagnosis was a blessing because it opened up getting some things covered by insurance we wouldn’t have had otherwise.
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I definitely remember that day…. it was 1 year ago today. But in a way it was a blessing because I finally had a TARGET!! Until then, I slowly watched by baby get worse and had no idea what to do or direction to go. The biological/physical underlying issues made ABA almost useless. My little guy is now almost 4 and has gone from non-verbal at dx to over 50 words now, with more added each week it seems. Thanks to biomed and diet interventions he is so much healthier than before and we continue to strive for more gains. As you said, I fully acknowledge that the ONLY reason that we have made so much progress in such a short time (and that I still have some resemblance of sanity) is thanks to those who have gone before and left ‘markers’ along the trail for us newbies to follow. I learn more daily via various blogs (TMR rocks!) and facebook groups and as a working mom I am eternally grateful for information that others provide that I just wouldn’t have time/physical ability to dig up if you didn’t share. THANK YOU!! THANK YOU!! 🙂 Last week as I walked in the door from work, my little guy looked up, made eye contact, and said ‘Hi’ – with no prompting!! First time ever!!… it was a priceless gift that increases my hope for his future and pushes me to fight harder.
Now THAT is a feel-good post. Thank you, horsegaljk, for sharing your experience. It makes our day to know that what we do helps.
We need more voices like Polly Tommy. So thankful we moved back to the US just as my daughter turned two. She still got poisoned by the vaccines upon our return but at least in our country there were Dr’s that were trying to help these children and families when she got diagnosed at age 11. Autism in our country is being treated at an abysmally slow rate. The cause of autism is still going on everyday. Parents are not being told the truth as to why there children are developmentally delayed not too mention suggesting appropriate treatment and referrals. How can our Pediatricians sit idily by and do nothing? Is there livelihood so important that Brain injuring a subset of chilldren need to continue? How can such evil continue in a sane society?
Killah – I remember the day well. Thank you for your beautifully written post. Have you ever seen this video of Autism being addressed in Parliament? Thought you might be interested. Hopefully, it links.
To ren tag: Let me know what state you live in. Kangen water will help your son with his tooth decay. The 2.5 water is bacterialcidal. Periodontist are using this in their practice. Kangen water is medical grade water that will help our kids. It is electrolyzed reduced water. This is what Dr. Corrine Allan uses at her brain injury center. http://www.brainadvance.org
To all Autism Moms and Dads out there: Autism = the toxicity we passed on to our baby while in utero and then the heavy metal toxicity of the vaccines that were injected into them when their immune system was already compromised by our “trusted” Pediatrician. I remember how carefully I interviewed Pediatricians before I selected one. What a joke!
We all know what this is now. We must continue to have our voices heard whether people want to hear it or not!
“my son wasn’t given a diagnosis at all, he was given a prediction of what he would become if left untreated.”
Absolutely, one of the truest, best, clearest sentences on this whole mess! So well said.
I want bumper stickers that say:
‘AUTISM=what untreated vaccine injury becomes’
I agree, Alison.
I’d love to hear the truth for once about what autism is….”AUTISM=what untreated vaccine injury becomes” sums up our experiences perfectly.
EVERYTIME I read this fab blog, I ditto all the way. I just want to make one HUGE point. ALL of these ASSHAT Dr.s, Psychs, Therapists, Evaluators, etc…. STILL GOT PAID. If the plummer, electrician, builder, printer, you name it BLEW IT SO BIG TIME… they DONT GET PAID. WHAT THE ____?
I’m at the point, I just CAN NOT STOMACH paying ONE MORE ASSHAT unless they aren’t at MINIMUM on board with the TRUTH. My son, now 9, has horrific tooth decay (got gut problems, you got chronic tooth decay) and I just WILL NOT pay an office full of bully, pushy perky Dental beotches unless they KNOW these kids can’t have flouride, KNOW that Nitrous Oxide is dangerous, and ABSOLUTELY KNOW that NO MERCURY comes near ANY child that sits in special ed “A” dx’d or not. I AM ONE ANGRY P’O Mother of a vaccine injured child AND a unvaccinated child who is the most NT kid I know (so much for your fat old Mom HORSE CRAP).
DONE….
more specialists than I can count said “maybe it is autism”, then my daughterw ould make eye contact with them… and they would say – “nope”
3 years later…we are finding our way on the mitochondrial disease diagnosis journey…and feeding her the whole foods her body can tolerate…and balancing on the autism tight rope daily, trying our hardest not to fall over the “edge of the abyss”… and blogging about our journey to hopefully help someone else not have to go down the same path….
thank you for sharing your story…and your journey…
I remember the day well. Five months pregnant and struggling with a violently struggling wet-noodle child, I came home and Googled “Pervasive Developmental Disorder”. Hard to even grasp.
I remember that day as if it was yesterday.
My PDD-NOS daughter was diagnosed at age 11. She actually was born in Bournemouth England. After reading your blog entry I’m glad we didn’t stay there. My daughter decended into autism after the Dtap and hib she received shortly after she turned two upon arrival back in the US. She became sensitive to sound within 3 weeks. Odd behavior started to occur……..refusing to ride escalators and elevators, always wanting to be carried, later great difficulty tying shoes and struggling with fine motor skills to write. To this day she struggles to ride a bike because of balance.
All the time I’m told her development is normal and the vaccines continue grrr.
Fast forward to 2nd grade and now the school diagnosed her with ADHD. The Pediatrician’s solution- the drug strattera.
Many more drugs followed……visits to psychologists, psychiatrists, behavior therapists, language processing evils etc
I’m saying this to new autism mom’s out there.
Find a biomedical Dr, Naturapath, or homeopath to clear out the heavy metal toxicity and heal the gut. Get Kangen water in your home. This is medical grade water! Start making more neurotransmitters in the brain through exercises that cross the mid-line. Raise glutathione levels so your child can detox everyday. I’m telling you all this so your path to recovering your child will not be as dangerous or long as mine was. Please tell any woman to detox before getting pregnant and educate before you vaccinate. I believe most Pediatricians have no interest in keeping our children well.
Besides the actual day of diagnosis from a very nice Psyhchologist who came to the house and made an hours worth of attempt to play with my non-responsive daughter, the 2nd occurrence I will never forget is the previous months 18 month ‘well visit’ appt with the pediatricians office of bumbling idiots. The newbie on staff, we were so lucky to get…(<-sarcasm intended) ..had heard my concerns of her lack of development…she tells me to put her on the ground. So I do, and my DD walks over to me to be picked up. The Ped's response, you ask? "Well, she walks! She's fine!!" Apparently Autism and walking are one in the same. Give me the referral, you idiot. And here we are. I will never ever forget…that day and the lesson it taught me. We are on our own.
I remember the night I realized we were dealing with autism. It was February, 2007. I had been wearing a path to various doctors for months. My then 18 month old son was walking (not even cruising), he wasn’t talking (not a sound except for screams). All the different doctors but they all said basically the same thing: “He’s a big boy. That’s why he’s not walking.” “Throw away the baby books and quit competing with your mommy friends through your child’s development.” “Relax, Mom. He’ll do it when he’s ready.”
That night in February, my mother called me. “Get online and watch tonight’s episode of 60 Minutes. It’s about autism. I remember a feeling like I had just been punched in the stomach. I watched that episode. Then I spent 3 hours crying hysterically. Then I got angry. How how the doctors missed this?! I did what I was supposed to do. I brought my questions about his development, or lack thereof, to the “experts”, yet they had ignored me.
It was that same night that I happened upon the Generation Rescue and TACA websites. And thank God I did. First, because they gave me hope that autism didn’t have to define my son’s life. Second, because it would be almost 2 years before the “experts” would give us an official diagnosis, conveniently just after his 3rd birthday. The diagnosis came just 6 days before the birth of my second son.
My experience, and I’m not alone, is the reason I cringe when they try to claim that the increase in autism is better diagnosing. I had to fight to get a doctor, any doctor, to listen to me. I had to fight hard.
My boy is getting better, no thanks to all those “experts”, but thanks to all those moms who have held my hand and guided me on this difficult journey.
I spent time as a President of a State FEAT organization. I met hundreds of families and have done online surveys. Out of 500 people, only one did not have to beg, demand, scream, force evaluations to find out what was wrong with their child, why they were regressing. 499 ran into a brick wall, delays, told it was a phase, denied referrals, accused of Munchausen by Proxy, berated by their pediatrician. Better diagnosis my ass! From everything I have heard from 99.9% of families, most pediatricians didn’t know Autism despite the fact that the symptoms were hitting them over the head like a baseball bat, and they still don’t today. A family I know was recently told by their pediatrician when they brought up ABA, “it’s a scam, if ABA were anything real or serious I would know about it and I have never heard of it”. OMG! They offer us nothing, then ridicule us for turning elsewhere. They are all clueless and complicit in a huge web of deceit. It’s time for heads to roll. The revolution is on!
kiwismommy…. wow…that is powerful data… 1 out of 500…doesnt sound like better diagnosis to me…
just curious if those survey’s are summarized anywhere…I would love to reference in an upcoming blog I am writitng…