Maybe there are two kinds of autism…
I wonder if there is maybe more than one type of autism spectrum disorder. Maybe there is an autistic like affect that is triggered by vaccinnes, dietary deficiencies and whatever else other theory is out there. I only wonder about this because I am absolutely positive that my son was born with a brain that is different. Here is my story…
I had a relatively normal pregnancy with my son, I had high blood pressure with all of my babies so that didn’t seem to abnormal for me. Mason was born on a snowy day in January after a long labor – he came out sunny side up and barely made a sound. He had white fuzz on top of his head and dimples in his cheeks. He was a beautiful baby (I think all mothers say that). Mason was a very quiet baby, he never cried, he slept very little and the most he ever ate at one time was about two oz. He was breastfed until he was three months when he cut his first teeth…we switched to bottle feeding only try to achieve a few hours of sleep, in hopes that formula feeding would encourage such a thing. It didn’t work.
At three months – Mason slept for a maximum of 6 hours a day, he never drank more than 20 oz of formula on any given day. He was still growing and thriving and the pediatrician said that all of his levels were fine and he was doing well. At six months he sat on his own, started to move around the floor pulling himself along. He was never interested in any toys, he didn’t move his head when there were loud noises and he never cried. We started him on solids at 6 months on the advice of the pediatrician as he seemed to be leaning towards the anemic side…so we boosted his intake with iron fortified rice cereal and extra vitamens in his bottle to keep him going. He started to sleep less and less…we would drive around the block for awhile, we put him in his stroller and walked around the block for awhile…when he finally fell asleep we would put him to bed and fall to our bed exhausted – only to be woken up two or three short hours later by a little boy who was seemingly hungry, or uncomfortable in some way…we tried everything to get him to sleep more – on any given day it was still six hours total…we were running on fumes by this point but we kept on in hopes that things would change. When Mason was about eight months old…there was some construction going on in the back alley and the force of the machinery knocked a picture off of our wall – right next to Masons head (he was lying on the floor driving a car back and forth) and he didn’t even flinch. We thought he was deaf…we went to the dr immediately in hopes that maybe this was the answer to all of the things that we were trying to figure out in his short little life. He was sent for a hearing test and it came back that his hearing was perfect and he scored higher than a normal child with regards to the measurements that showed of how his brain was reacting to the sound. Back to square one…by this time Mason was cruising around furniture – he would fall and bump his head or his shin and get right back up again without making a sound. I should probably mention in all of this that he was vaccinated about a month later than recommended each time with no reaction to the shots. Mason continued on happily playing with cars and driving them back and forth on the floor – it was the only thing that he would play with – he would lie on his back and spin the wheels constantly – never making a sound and never responding to anyone calling his name. By this time we knew that maybe something is up but when we spoke to the dr at his one year check up they told us to wait. We said … ok…and plugged along – sleep deprived and frusterated that we weren’t getting anywhere…
Mason was 15 months old when we had had enough – from the time of his first birthday to the 15 month mark – he had developed a wicked “temper” – he started banging his head on the walls – wherever and whenever he could, we did everything we could think of to teach him how to “ask” for stuff and we made some headway with basic signing. It became apparent that there were very few places that we could take him that would not trigger an all out meltdown (as we now call them). This carried on – we managed to get a referral to a pediatrician at a children’s hospital but we were looking at a wait of about three months (at that time it seemed like an eternity). In the meantime the home visits started and we managed to get someone to listen to us and what our concerns were and then things were kicked into high gear – I am not going to go over the details of what followed with the assessments and diagnosis…my point to sharing up to this point is that maybe there is genetic autism that a child is born with – wired differently from day one and then there is the kind that makes a kid change seemingly overnight and with therapies and dietary changes we encounter a “cure”. What I do know to be the same is that early intervention works really well…I have four children – all of them vaccinated and only one with autism…Mason is my third child – he didn’t reach certain milestones, he didn’t cry, he didn’t sleep and he didn’t eat (much). He has autism – he is 6 years old – he has been in school since he was 33 months, he still doesn’t eat and sleep is optional except when it is the full moon – and then if we were students in college pulling the perpetual allnighter then we would have company. We are used to it now…our lives are completely blessed. This is the kind of autism that gets minimal attention and not that I want it to be splashed across the front page news…I wonder how many more people out there have heard this varying version of events. Mason didn’t wake up one day and stop – he gets up everyday and starts something new…just trying to make sense of the world he was born into and doing his very best to “fit in”. Cheers all…
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How many Children, do you think, have Autism on this end of the spectrum?
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Thanks for all of the comments everyone – it is really great to see some feedback. I just take a different approach with what we do for our son and how we have designed our lives to ensure that we are not drawing attention to his so called weaknesses but celebrating his strengths and using those to ensure that his weaknesses get a chance at growth…having 9 therapists of varying professions and 4 doctors and running here and there just doesn’t work for our family and our belief system and as for potty training – it took a year and replacing the carpet in our basement, talking came one day using signs and we still do it now…I am not saying that our methods are right or the right way but it is what works for us and I sure as heck don’t want my kid growing up in that world being “autistic”, he is Mason. That is it and that is all I have to say about that for today:)
@AubreyMcFate@xanga – The original defining difference between autism and schizophrenia is that schizophrenia has ‘onset’ and progression, and autism is an underlying preset condition without further progression. Autism is a hardware problem, schizophrenia is a software problem, if you will. If it’s that easy to ‘trigger’ a brain malformation, then I would think we’d have mutant brains of all kinds running rampant. I don’t mean to be snide, but it just hit me funny the way you said it. I’m all for looking for fetal development triggers, since alcohol has been shown to have deleterious affects on the fetal brain, but autism seems to be more a hardwiring problem than a miswiring problem.
first off let me start off by saying that jenny even says her son is not completly cured, but it has been found that osme children with autism do extremly well of the gfcf diet and it helps them to build their vocabulary and to stop the tantrums and the “head banging” there is no known cause of autism, and if you know jennys story, you would know that the dr diagnosed her son after watching him and noticed his behaviors such as the flapping and the spinning, classic autism traits. about 60 % of parent with autistic children say that it seems as though their child changed over night, when in reality it was probally a gradual thing that they just happend to notice at a certain time. our son will be 3 july 11th, he was slow doing everything, slow sitting, crawling, walking, everything. when he was 18 months old his routine changed dramatically, he wouldnt sleep any more, he stopped talking like he was and its as if he went back instead of going foward. we had him looked at and they wanted to wait until he was closer to three to see how he progressed, well we waited and now hes diagnosed with autism.
Alot of the children who seemed to be “cured” is because they go through hours and hours of therapy with many many different therapists, my son is in speech, occupational, applied behavior, physical, feeding, and has a DAN! dr as well as a regular pediatrician, and a developmental pediatrician. A child with autism will never be fully cured, but you can curb alot of the behaviors, but you must remember that there are so many different “types” of autism, a child can be any where on the spectrum, you have the child who only is mildly affected and then you have a 7 yr old still in diapers and who cant talk even one little bit.
@Masonsmom – Mason’s story sounds exactly like my cousin’s: he simply is the way he is and always has been (he’s 19 years old currently.) I think we’d all be better off if the powers that be decided on a different name for the condition that occurs suddenly and can be cured, as it’s not the same thing. I also remember reading the headline about Jenny McCarthy’s son being “cured of Autism,” and thinking to myself, “well, he obviously wasn’t autistic then.”
My grandson slept only a few hours a day for a long time when he was younger. Also doesn’t seem to have a normal response to pain. One time he was going up the stairs with his mother behind him. He slipped and a stair hit his gums and teeth and there was blood…but not a tear or any reaction from the child. I’ve seen it too. He’s profoundly hyperactive so, yeah, sometimes he hurts himself faster than you can stop him…and it doesn’t seem to phase him at all. It’s more than weird, it poses extra challenges.
I knew he was autistic when he was an infant — at a year old, he wasn’t looking any of us, not even his own mom or me, in the face.
Prolonged dietary changes made absolutely no changes in his case.
At 6 and a half, he’s intelligent enough, understands much, but doesn’t speak. After going to a school for autism with lots of floor time therapy, he started making eye contact. We introduced some sign language at home. Now he makes lots of eye contact and has intensive in home therapy and uses picture cards to communicate, which is great because he only mastered using a few signs even after hours of intensive daily efforts on our part.
He was different from the start.
It’s useful to view autism in a 3D model way rather than just a linear spectrum. This more fluidly allows for many tangents/differences/associations and more effectively deals with fuzzy sets while at the same time allowing for future differentiations. A linear spectrum model fails us in these respects and makes discussing autism more difficult in some ways.
I’ve been thinking the same thing. I don’t have a relative with autism, but I have been studying the disorder since I was in high school and writing my senior research paper. Interestingly, the first articles that I came accross were about vaccines and dietary interventions (this was back in 2000). Now the majority of stories that I read are similar to yours. I think that if GFCF diets can work miracles for some but not at all for others, then food allergies probaly cause symptoms that mimic autism instead of autism itself. Same with reactions to vaccines.
@Lisa – THIS comment is fantastic. I love it when people get on here with real experiences and share what they find out and what’s working or not. I have never mentioned this except to my doctors and in a post on my blog, but I was born with fluid on the brain that had my soft spot puffed up real hard like a ball, and was never told until a CT in my 30’s that I have Empty Sella Syndrome, which is apparently fairly common, although the doctor said I’ve had mine since birth. Other complications included projectile vomited and severe gastric distress, so I was checked for pyloric-stomach cancer as a newborn. Great start to life, eh? Anyway, my point is, I’ve been surviving a whole lotta stuff since I was born, and no one ever knew back then what it was, why I was puny and weird, etc, and I think the more we all observe and share, the more we’re going to figure out all the blurry lines that exist in these ‘spectrums’. Hope all goes well with your son.
We have a very similar story. We are convinced that our son’s brain has been different from birth. Where we differ is that he actually has congenital hydrocephalus that was not diagnosed until 4 mos. He had no ‘classic symptoms’, but he slept a lot. As first-time parents, when we inquired about this, the healthcare providers told us not to worry b/c all babies require different amounts of sleep, but he slept A LOT!! The hydro. caused pressure on certain parts of his brain and thus has caused some visual impairment (which was how we finally got an MRI), but he can still see. We also have a cerebral palsy diagnosis as well as an epilepsy diagnosis. In our minds, his brain is simply wired differently, possibly due to the trauma it endured probably in utero as well as early in his life. He is a great kid that everyone just loves. At 6, he’s progressing and learning in school, but still is very awkward socially. Early intervention was also a key for us. We began with PT and OT when he was about 6 mos. old and that has continued. He has also had speech, but his speech is actually very good, it’s just the social appropriateness of when to say and do things that he struggles with. I’m not sure where he or we would be had we not had a wonderful school district as well as a great private pediatric therapy clinic. Best!
@Masonsmom – i’ve really only heard about the type of autism you’re referring to, never about a child completely changing overnight. just for the titles sake- there are several kinds of autism but they’re not based on when they occur, just the severity. anyway i think you are ridiculously strong for getting through all of this and giving your child so much love, even after enduring such a large amount of stress. having you end this saying you are blessed is absolutely beautiful and i hope everything continues to look up.
I don’t think there’s any kind of autism related effect from a vaccine. I think if something “cures” it 100%, then it wasn’t autism to begin with. A change in diet or something like that can’t change the wiring of your brain, and that’s kind of what autism is. There could be some kind of awkward and rare effect that’s similar, but it wouldn’t really be the same thing. And I think considering it anything like legitimate autism would be adding to the hype of parents saying their kid is autistic when really it’s not. But that’s all just my opinion. As for your son, he sounds like a lovely kid. 🙂 I wish you well raising him and helping him grow and live a happy life with it.
He sounds like a beautiful little boy and a wonderful human being. Keep up the good work!
@Masonsmom – Alright. Thanks. I always find it interesting when someone has another POV.
@abilene_piper_lg@xanga – my point being that there seems to be a difference in the reports that parents give where in just one day their kid quit talking, responding – whatever…how about the ones that never did…that is my point – my husband and I have a theory that there is probably an autistic like affect that may be triggered from vaccinnes. The whole nonsense of the vaccination thing came from the daughter of Rupert Murdoch – one of the Executives of NBC when someone asked her what she thought caused it…Jenny McCarthy has gotten a lot of press about her son – the story didn’t wash when she said that her walked into the neurologists office and the guy “took one look at him” and declared that he had autism. The GFCF diet worked on him and he is magically all better. I agree that autism spectrum disorder is being diagnosed a little to freely and I also agree that it is a little like the ADHD/ADD nonsense in the 80’s and 90’s – I am so against that kind of stuff that I waited until my oldest son was 12 before I realized that the kid probably did need help and that he wasn’t behaving badly because he was a jerk. Thus the “two kinds of autism”. I am fascinated by conversations with adults with autism – and they think the same way as I do about the whole frenzy that is going on. Thankfully we live somewhere where therapies and such are fully funded through the school system. Mason is a part of our family and we don’t give the “autism” so much attention…but someday we are going to have to figure something out. I am so tired of listening to people who want a cure…there is nothing broken here…but we still need to manage it. Thanks for reading ….
I agree with abilene_piper. I think it’s great to catch real problems at younger ages and try to help the kids, but so many people are making money off that hamster wheel now, it really does look like the ADD ‘scare’. I raised a child (full time step) with fetal alcohol disorder, so I’m all for looking at fetal brain development, but there are more babies with FASD problems born to women who do drugs and alcohol than there are kids with autism, and you NEVER see that on the news, never hear warnings about it, and it is completely 100% preventable, so to me it looks suspicious that the media frenzy can’t seem to get over the autism ‘scare’ and be more helpful. I hope you have good luck getting help for your kiddo, I know it’s hard. If all parents kept notes and compared the notes, we’d get a better bigger picture, so I think you’re doing the right thing, paying attention and writing it down. And don’t despair. Hugs for the hard stuff. Hope you keep us up with what you find out! I wrote out a fetal and childhood history for my own doctor, and there is no clear indication of anything that may have caused my own autism, except the possibility that stuff like darvocet and antibiotic injection coupled with poor diet might have lent a little bit of a hand, but I clearly come from a family history of Asperger’s on my dad’s side, and since they’re Mennonites and I was raised without doctors, vaccines played no role in my own experiences, so I tend to lean toward genetics myself. My psychologist asked me if I thought culture played a role, and I said definitely, given that a very tight community of people over several hundred years migrated together around the world to settle in the U.S., and many of them (in my family line) seem to have the same kinds of personalities. The culture they maintained also contained and engendered more of the same, if you will, and you can see how this could compare to breeding qualities into and out of animals. I hope they do more group studies, I think it would help as a control group against other theories, and then we could see if there really are multiple causes for autism. Very good point to bring up, thanx for posting it!
Not sure as though I follow you, however, my real fear is that Autism is becoming a catch all much like ADD was in the 80s and 90s. I think at this point it’s probably over-diagnosed.