This isn’t easy for me to write. It’s not news that I have opinions that don’t jive with the mainstream media, and usually I’m okay sharing those thoughts, but this one is a bit more personal. Because it affects me personally. Because I know that no matter what I say, people who have not lived a day in MY shoes are going to try to tell me “how things really are” based on their own experiences with autism or based on what the media has told them about autism. Because I know people are going to make decisions about my son without having met him. And I’ve struggled about whether that’s fair to him, but I’ve also struggled with it feeling wrong to stay silent. So I asked my son, and he says he thinks it would be a good idea to share his story. So I will.
And I’ll preface this by saying it’s HIS story. It’s ANECDOTAL, and I’m not claiming otherwise. But all personal stories are anecdotal, and it doesn’t make them any less true. And the reality is, if you’ve met one child with autism, you’ve met one child with autism. But there are large groups of people out there who have a story similar to my son’s, and they are told they are wrong. Why? Because the media said so. Because the studies they want to believe say so, and all other studies are bogus…even though they aren’t.
So here it goes.
My son was born 4 weeks premature, but healthy as a full term baby. He was cuddly. Responsive. Happy. He made eye contact. He smiled early. Sat up early, crawled on time. Walked on time. Started talking about 9 months and by a year was saying words like “elevator” and short 2-word phrases. And here is where I’m going to lose half of you before you even take a moment to hear everything I have to say. But I’m gonna say it anyway, and I’m gonna hope you will hear what I’m actually saying and not what you THINK I’m saying.
When my son was 12 months old, he had an adverse reaction to his scheduled vaccines. PAUSE: This article is NOT saying vaccines cause autism, and adverse reactions ARE listed as a potential side effect–one that is considered a “necessary risk” by the CDC. Their words, not mine. This is indisputable, and you should question anyone who tells you otherwise, because even the people who manufacture them will tell you the risk is there, though very small. This is why they pay out millions a year to families of vaccine injured children–and let me tell you, it is NOT easy proving a vaccine reaction medically! They aren’t just handing these out willy-nilly. These families have passed the most scrutinized medical investigations to confirm that indeed their children DID have a vaccine reaction. As my son did. And here’s what happened when he had his.
He went from never sick a day in his life to an extremely high fever, projectile vomiting, and inconsolable crying. That SAME DAY, he stopped talking. His mobility regressed significantly. He stopped making eye contact. He stopped meeting his milestones. He started freaking about different sensory things (touching his face, brushing his teeth, food textures), started stimming, started having bouts where he just rolled around on the ground screaming. He started banging his head on things intentionally, so hard it left bruises–and that’s when we called Child Find.
Now you can tell me all you like that he was born with autism. That it coincidentally showed up overnight on the same day he an adverse reaction to his vaccines. And maybe you are right (though we now know he had a genetic pre-disposition for vaccine reactions–more on that later.) Either way, if it had happened in conjunction with ANYTHING else, you would probably think differently. Reality is, neurological damage IS a proven POSSIBLE but RARE side effect to vaccines.
Has science proved vaccines CAUSE autism? No. Nor have they disproved it. There have been studies that “disproved” it (same as there were studies that disproved the cigarette-cancer link once upon a time) but science can’t prove a negative, only fail to prove a positive. There have been many studies also that have shown a link–and no, I’m NOT just talking about Wakefield. But if anyone wants to bring up how his studies started off on the wrong foot, due to conflict of interest by who hired him, well, look at every pro-vaccine study…ever. They are run by people who will profit millions. Whether you believe in the good they do or not, people are making money off of them, and where money is involved, there is ALWAYS a conflict of interest. Be it pro vaccine, anti vaccine, or in between. That said, I don’t think the vaccines CAUSED autism in my son, and I am not anti-vaccine. If you want reconcile that with everything I’ve said so far, you’ll have to keep reading, as to me, this is not a black and white issue.
It would be all to easy for this post to regress into everything else there is to discuss about vaccines, their risks, their benefits, the risks of the diseases they protect against, the reality of those diseases and how to treat them (which I believe everyone should know how to do regardless), but I want to keep this story focused on autism. It really doesn’t matter to me that a vaccine reaction triggered it in my son. If it hadn’t been that, it COULD have been something else (or it might not have been). But it’s WHAT HAPPENED so it’s part of the story, and while I hate to bring up vaccines in telling this story, I would be withholding relevant information to do so. Most children will not have an adverse reaction to vaccines. Most children who do have an adverse reaction will not have a serious one like my son did. We now know WHY my son was one of those rare few who had a reaction–yes, there was a scientific, MEDICAL reason for it. More on that in a bit.
I want to pause for a bit to tell you more about my son’s journey and address the point I’m actually trying to of this article. First I want to tell you, the autism community is divided on many things. What is “real” autism, for example. Well, some believe it’s only “real” autism if you are born with it and it can’t be cured. There’s several flaws with that logic. First, if you believe that autism NEVER has a cure–because it if did, it wouldn’t be called autism–then if you think your child really has autism, you wouldn’t even TRY to cure it. So you can’t even know if your child really has autism, because you haven’t tried to cure it, therefor don’t know if it can be cured. But some people aren’t trying to cure it because they are sure their child has autism and they don’t want to “change who they are”. But how can you really know, if such a think exists as “not real autism” that looks exactly like autism but is caused by something treatable? Which brings me to the other side of the debate. The idea that parents who are trying to “cure” their children aren’t accepting them for who they are. You see, though, it’s all about your paradigm.
I have done a lot to help heal my son. Not because I love him less with autism, but because I love him so much that I don’t want to see him in pain, I don’t want to see him struggle, I don’t want to see him not be who he was born to be. Had he been born with autism–had those symptoms been present from birth–maybe, MAYBE I would feel differently. I can’t say, because I haven’t lived that life. I’ve lived this one. And in this one, autism was a symptom a problem, NOT “part of who he is”. And for other people, autism is a beautiful gift that makes them the amazing person that they are. Some could even say–and I believe it–an evolution of our species. But as some have pointed out, there’s autism that’s who you are (what they call “real” autism) and there’s autism that is just how the medical field diagnoses you because that diagnosis contains your symptoms–symptoms that COULD be caused by another problem. And that was the case with my son.
The first thing we did with out son (from 15 months old to 3 1/2 years old) was therapy. YEARS of therapy, and we were getting no where. He could say 5 words. Learn a new one, lose an old one. He could not retain more than 5 words no matter what. He couldn’t drink from a cup or straw (something he had already been doing prior to his reaction). He couldn’t potty train. He started a pre-k program for special needs kids, and it was mostly just him freaking out the whole time because there was too much noise, too many people, too much sensory input–things that years ago, before his reaction, have been a complete non-issue. Should I believe that the first year of his life was not who he really was, and that a life-altering medical complication played no role in the abrupt change with him? And that when we treated the medical complication, he changed back?
While he was going through this, though, his audiologist told us that his brain was struggling on filtering out information, so he was trying to process EVERYTHING as though every detail were equally important–the ceiling fan creaking, the refrigerator humming, people talking. It was overwhelming. And we weren’t getting anywhere. You won’t convince me he was better off that way. Heck, don’t even bother. Try to convince HIM he was better off that way. See how HE feels about it. Because that’s what I’m concerned with.
Finally we decided to start treating his body. We tried a gluten free, casein free diet for “healing a leaky gut” as a leaky gut can cause behavioral issues that present as autism. Guess what? He potty trained. He started talking. His behavior improved. We would try taking him off the diet–immediate regression. Put him back on. Improvement. Off, regression. On, improvement. All the people who used to think we were nuts–teachers, babysitters, etc–would ask us on an off day “Did he get into some gluten recently?” They, the skeptics, could SEE it. THEY started telling us not to take him off the diet. (PS: Once we left him on the diet long enough for his gut to COMPLETELY heal, we were able to take him off of it without repercussions.)
The next thing we did was a heavy metal test. We learned his body had high levels of heavy metals, and we moved on to chelation to detox him. Again we saw another leap in improvement with him. And over the years, through therapy, diet, and medical care, he has continued to improve. As those improvements started, and he was able to talk again, he started telling me about what he had felt. He could remember so much. So, so much. So many things he was aware of but just could not tell us. He told us how he “felt a green bean in his head” and how he felt trapped in himself, how he “just didn’t feel right and couldn’t help it” how he felt completely out of control of his own body. And as the years pass and his healing continues, he feels a lot better. Does that sound like how he was born to be? Does that sound like that was “just who he is”? Because it doesn’t to me.
This is the point of this post. The reality of it all. That not every person with autism feels like it’s part of who they are. Many do. They will tell you as much. But some don’t feel that way. Can we respect that? Can we respect how people like my son feel? Can we stop blaming parents for “chasing the rainbow” or “trying to change who their kid is” and accept their kid might be different from ours? Their kid might be battling something different, something that DOES need to be changed, even if the symptoms are the same?
Whether you think my son had real autism or not, the reality is, he struggled with those same struggles, and they aren’t completely gone. They may never be. Because you can’t undo the neurological damage he sustained. And now we know why. Now, through genetic testing, we have found out why my son had that vaccine reaction, and why that reaction caused problems that presented as autism.
We found out, just recently, my son carries an MTHFR gene. This gene alone is not usually linked to autism, unless paired with another gene mutation that my son did NOT have (which is why he wasn’t born with it). (And there are probably people with autism who don’t have this gene…I think there’s more than one thing that can cause symptoms of autism to present.) Anyway, my son didn’t have that inner trigger, but he had the mutation there, and it was something that COULD be triggered…by an outside source. That outside source is heavy metals: aluminum, lead, and mercury. And while vaccines tout having safe/low amounts (even 10 years ago, though they weren’t AS low then), the thing is that people with this MTHFR gene cannot process heavy metals the same way that other people do, so those SAME substances affect them DIFFERENTLY.
Like I said. I don’t blame the vaccines for the AUTISM; I’m just not denying that the reaction that LEAD to the autism, in the same way SOMETHING ELSE could have–but again, it wasn’t something else. Just reporting the facts here. (Also, it may not have been any ONE vaccine that caused the reaction, it could have been the build up of those metals in his system over the first year of his life, because he has that gene that makes it harder for his body to process those metals compared to other people). So, yes, vaccines ARE what triggered it for MY son, but exposure to aluminum, lead, or mercury from another source could have done the same thing. That’s not what happened, but it’s possible. It’s also possible he never would have been exposed otherwise. It’s also possible that even if he had been exposed in another way or at another time, he wouldn’t have had the same reaction (as this particular MTHFR gene can be sensitive to timing).
Some people reading this may think I’m trying to make a point about vaccines. I’m not. I regret that I had to include that information to make my point, but I did, because I needed to illustrate situations in which someone is NOT born with autism, and this is one such situation. Sadly, because this information WAS needed, I realize this is going to open up the vaccine-debate can of worms. But that’s not my intention, and I hope, so deeply and completely, that people can understand the REAL issue I am bringing up. That, simply put, autism is not one size fits all. Some people are born with it. Some aren’t. Some the cause is unknown. Others can pinpoint a trigger. Some, it’s really JUST autism. Others, it’s medical condition (such as heavy metal toxicity or leaky gut) that is presenting as autism. They both get the diagnosis either way.
The point of this post is that mom’s who are trying to cure their kids of autism aren’t tinfoil-hat wearing, rainbow-chasing lunatics who “don’t accept their children for who they are.” In reality, we DO accept our children for who they are. And WE know our children better than anyone else. WE know who they really are. Many times, they even tell us who they are, once they are able to do so. We are’t trying to change our kids into someone they aren’t. We are trying to remove the barriers that stop the from being who they really are. THAT is what this post is about. So for one parent, helping a child be who they are means embracing their autism. For another parent, it can mean helping them overcome a medical condition that presents as autism.
We are all after the same thing. Helping our kids be happy, healthy, and themselves. How that looks for one kid is not how it’s going to look for another child. Believe me, it’s not that we are anti-autism. We are just pro-our-children. And whether a child is born with autism or has a medical condition presenting as such, IT’S STILL A STRUGGLE. We need each other. We need to come together, NOT to tear each other apart. It’s hard enough and lonely enough without us alienating each other, too.
And here’s what we’re not “allowed” to say. But I’m going to say it: I’m NOT lucky my son has autism. I wasn’t “blessed by god” with a “gift of an autistic child”. My CHILD is the blessing, NOT his autism. And even for children who were born autistic and who autism is part of who they are…those parents are blessed by their child, NOT by a PART of their child. So I’m tired of this “Politically Correct” response of acting like parents who have autistic children are the “lucky ones”. We are no more or less lucky than any other parent who have healthy children in their lives.
Autism isn’t an awesome experience for all of us. While my son’s autism has inspired me, I care more about his happiness than being inspired. While I found his outlook on the world charming, I’ve always cared more about his comfort. And you know what? Even as he heals, he still provides charm and inspiration. THAT is part of who he is. The head banging, the stimming, the pain, the tears…that’s not who he is. That’s not what defines him. And I will never feel bad for doing everything I can to take that away from him–because HE didn’t want that, either. And for all the glamour autism is credited at times, the reality is, it’s hard. Our children aren’t the only ones with tears in their eyes. They aren’t the only ones crippled by emotional pain, overcome by confusion, or alienated by this world. Autism affects families on a cellular level. But we put that aside to do what is best for them, because we love them. And what’s best for one child with autism may not be what’s best for another child with autism.
Because if you’ve met one child with autism, you’ve met one child with autism.
They are no two alike. No one is, autism or not.
Thanks for reading. This is only one aspect of my son’s story, but I hope it helped someone, somewhere. If it does, it’s worth all the hate and anger it may stir up in others.Read More