My Son’s Autism Was Caused by Autoimmune Encephalitis and No, I Won’t “Accept” It.

Something highly unusual in the world of autism happened to my son last week. He received a diagnosis of autoimmune encephalitis from a prominent and highly respected mainstream pediatric neurologist. Moreover, she stated this to be the cause of his autistic behaviors. Seven years after his devastating regression into autism, we finally have answers as well as a thoughtful treatment plan. We’ve moved out of the realm of “just autism” and into a realm where his suffering is being taken seriously.

Autoimmune encephalitis is a serious medical condition in which the immune system attacks the brain, impairing function. What makes my son’s diagnosis last week so unusual is not the fact that autoimmune encephalitis is a rare cause of autism, but that it is rarely diagnosed in this population. Similarly, it is rare for autism to ever be attributed to a medical condition by a mainstream physician. To say autism has any conclusive medical underpinning is practically heresy.

Like most families, when my son was diagnosed with autism, we were told the only proven treatment was Applied Behavioral Analysis (ABA) therapy. Of course, there was no known cause, and positively no cure. Most certainly, there was no medical treatment for autism, unless we took pleasure in throwing handfuls of cash into the wind and slathering our son in snake oil.

To disagree with this aloud in any setting other than our own bedroom was tantamount to throwing ourselves to hungry wolves. Being naive and determined to improve my son’s quality of life, I threw myself to the wolves again and again and again. I knew in my heart that something was medically wrong with my son, so I sought medical help in all the predictable places. First from the gastroenterologist, who proclaimed my son’s constant diarrhea to be no problem at all. “Toddler diarrhea” he called it. No need to worry mom, but please, let that child eat gluten and drink milk lest he feel left out at birthday parties. I informed him that since my son did nothing but bang his head continuously on days he drank milk that the likelihood of him being invited to any birthday party at all while consuming dairy was slim to none. “Introduce it again in three months,” he said.

And so it went. Pediatrician for constant reflux, ear infections, respiratory infections, incessant crying, lack of sleep, hypotonia, twitching, sensitivity to light and to touch. Allergist for testing and confirmation of a dozen IgE mediated food allergies. Geneticist, developmental pediatrician, immunologist, local neurologist. One doctor after another, one medical diagnosis after another. There was an explanation for all of these conditions, but the explanation was not that autism was medical. This was a clear case of really bad luck. Or hysteria and anxiety on my part. Or both. Missing from the equation entirely was any professional curiosity as to how, in one generation, autism went from exceptionally rare to frighteningly prevalent.

Friends and family were no better after my son’s autism diagnosis. Precious few said what I desperately needed to hear. Their hearts knew this was very bad, but their minds had heard that autism was just “neurodiversity.” We needed to accept this. Perhaps my son would wind up like Jerry Seinfeld, who once claimed he was on the autism spectrum. Given the conflicting messages coming from their hearts versus their brains, their mouths had little to offer. They certainly didn’t say that they were deeply and sincerely sorry. That they understood what an incredibly crushing blow this was. That they acknowledged the intense, all-encompassing pain in our eyes. That they recognized our souls had not a second of peace since our world started unraveling.

In fairness, none of them were to blame. Americans cannot know what a tremendous burden autism is, because recognition of this reality is strictly taboo. We have the awareness camp and the acceptance camp, but the “this totally sucks” camp does not exist in the open.

The truth that autism is medical has yet to make its way into the consciousness of most people, so if one wishes to retain their status as a good parent, complaining about autism is strictly forbidden.

What makes autism so different from other medical afflictions is not only the failure of it to be properly labeled as a medical condition, but the fact that, even within the autism community, the acceptance dogma is so thick and so oppressive that few honest conversations take place, even with other autism parents.

Somehow, it dawns on almost no one that perhaps autism has a medical basis, even as one third of our children experience seizures, a blatant sign of a medical problem. With this truth ignored and swept under the rug, the reality of what it is like to have autism and to parent a child with autism is airbrushed and transformed into a positive fantasy that suits just about everyone but those lacking validation and support.

For seven years, I have been parenting a child with autoimmune encephalitis, under the pseudonym autism. AE is considered life-threatening, killing 6% of those afflicted. For seven years, we’ve dealt with days consumed with endless crying, for months at a time. With intense emotional and psychological pain that no human could fix because this was “just autism.” With intrusive repetitive thoughts that controlled every waking moment, making us prisoners in our own home and my son a prisoner in his own brain. With crushing anxiety that prevented anyone from coming to our house, and anyone from leaving. With diarrhea. Followed by constipation. With food allergies. With insomnia. With refusal to eat. With an immunodeficiency. With month after month of traumatizing IVs to treat it. With five straight years where nobody slept through the night. With rages. With holes in the drywall and rooms torn apart over transgressions as small as grandma purchasing a blue pool noodle instead of green.

With tears. With so many tears.

For seven years, we’ve been drowning. And since autism is synonymous with all things good, acceptable, and neurodiverse in this world, and since all kids with autism are simply wired differently, and since doctors who say otherwise are quacks, and since parents who think otherwise are in denial or worse, we’ve been forced to remain silent about our pain and our reality.

For seven years, the autism label slapped on my son’s medical condition has given doctors a reason to dismiss his suffering, friends a reason to be angered by our failure to show up at important events, and family members a reason to question our sanity and criticize our parenting skills.

My son’s autism label gave us a reason to just shut up. Even in our darkest moments, we reported our family was “fine, thanks.” We trudged forward, shamed into silence. To say we did not accept our son’s assignment to autism as his destiny, that we were searching for a Get Out of Autism Jail Free card, would have been perceived in the same manner as if we were to say we did not love our son. That he was intrinsically bad, and wrong, and not what we had hoped for.

Of course, this could not be further from the truth. My husband and I love our son as much as any humans could ever love another. He is beautiful, clever, and sweet. But he also has also suffered so very, very much.

All would conclude that autoimmune encephalitis striking our toddler and continuing on undiagnosed for seven years is a horrible tragedy. Similarly, we are all in agreement that a childhood diagnosis of cystic fibrosis, juvenile diabetes, or leukemia is devastating. It is perfectly acceptable to not accept these diagnoses. Everyone understands that despising a medical affliction while loving the individual suffering from it is not at all mutually exclusive. We know that having disdain for a disease in no way translates to lack of acceptance of the individual. The idea of “just accepting” diabetes or cystic fibrosis instead of treating them is asinine.

What happened to us last week was monumental. Finally, because we have confirmation that all along our son has had autoimmune encephalitis masquerading as “just autism,” we are allowed to feel pain and grief and talk about how much we hate that this happened to our son, without judgment or disapproval. We are allowed to provide him medical treatment designed to remove the obstacles he faces without being delegated to the status of pariahs in our community. We don’t have to pretend to accept or celebrate a thing. It’s a given that my son’s talents and personality are in no way intertwined with autoimmune encephalitis and that autoimmune encephalitis does not define him.

Without a doubt, the world will learn in the coming years that autism is just a name for variety of terrible medical tragedies that strike our children. Mainstream doctors will begin treating children with symptoms of autism for autoimmune encephalitis, Lyme disease, mitochondrial disease, Celiac disease, vaccine injury, food intolerances, methylation defects, heavy metal poisoning. When this time comes, there will be no celebration of autism caused by mitochondrial disease. There will be no walks, no t-shirts, and no bumper stickers glorifying Lyme disease nor lead poisoning. Nobody will chastise a mother for failing to accept this as her child’s lot in life.

Until then, as your life intersects with families of children with autism, know that when they say they’re doing well they are likely just barely surviving. Acknowledge that you recognize how challenging this must be for them. Give them a hug. Tell them they’re doing a fantastic job and you think they’re warriors. Tell them you would love for their child to come over and play with yours, that you’ll hide the blue Popsicles, and it’s alright if their child flaps his arms or repeats the same phrase a million times. You’ll talk to your kids about loving and accepting our kids exactly as they are today, medical conditions and all. Show the same understanding you would for a friend whose child was suffering from any other medical illness. Demonstrate you understand the weight of autism.

And autism families, be gentle with yourselves. Be steadfast in your knowledge that you know your child better than anyone. Be confident in your intuition when your heart whispers this is not “just autism.” Dismiss the acceptance dogma and the notion that giving a voice to the pain and searching for medical treatment for autism is incongruent with complete love and acceptance of your child. Be proud of yourself and proud of your child. Hold your head high. Know that as we each throw our one little starfish back into the ocean, we are changing how autism is perceived and treated, and we are blazing a more manageable trail for the children and families that will come after us.

~Ashlyn Washington

Originally posted September 2016

Autism is medical!

Related Research:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4717322/

http://molecularautism.biomedcentral.com/articles/10.1186/s13229-016-0110-z

https://www.ncbi.nlm.nih.gov/pubmed/24193577

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086677/

https://www.ncbi.nlm.nih.gov/m/pubmed/28012531/

http://journal.frontiersin.org/article/10.3389/fpsyt.2017.00003/full

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5107293/

 

 

91 thoughts on “My Son’s Autism Was Caused by Autoimmune Encephalitis and No, I Won’t “Accept” It.

    1. I agree. You described my dd10 exactly.. I could’ve written that article, but not as well as YOU did. Thank you.

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    1. Ashlyn Washington, you are right and the rest of us know you love and accept your child warts and all! This is medical and the result of autoimmune encephalitis. And if we don’t accept that and just light it up blue, we don’t have to do all the hard work our children need to recover. Anyone who actually has ever had an opinion, becomes a target. But don’t you believe anything they say, I know you are correct! My son is living proof that kids can recover when they get proper medical attention along with the behavioral and educational piece. The medical makes it possible for our children to learn what they couldn’t before. That is why Ryan is now an aerospace engineer. The “experts” said there was nothing I could do and he would have to be institutionalized. Thank god I didn’t listen to them. And you shouldn’t listen to any one who says you are not the BEST Warrior mom ever! And I’m mailing you my book “I KNOW YOU’RE IN THERE – Winning Our War Against Autism” just as soon as you send me your address. http://a.co/84Zk81J

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  1. Thank you so very, very much for this. You have succinctly put into words how I have felt for a long time. My son was diagnosed ‘mild’ Aspergers several years ago. I have been offered no support except behavioural which funnily enough does nothing to help his behaviour. I’ve been told to “keep doing what you’re doing, because you’re doing great” when I feel like I am drowning. His behaviour and health is NOT normal and I will never accept it as such because to do so is resigning him to a life of at best mediocrity and barely getting by. To do so is accepting that drowning in frustration and overwhelm is my life.
    I have seen him as an almost normal kid when we pushes hard for the right diet and supplements. So clearly there is hope. But because ASD is now ‘normal’, the rest of the family refuses to see how diet, supplements and lifestyle could possibly bring him back from the dark pit of ASD.
    I myself have an autoimmune disorder. Yet no one expects me to accept it. Nor do I want to be treated as ‘normal’. I want to be treated with acknowledgement that I have a disability that means I need extra help. Kids on the spectrum deserve that same acknowledgement and all the extra help they can get!

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  2. Your story brought tears to my eyes. As a mum of 3 young men on the spectrum I see & hear this everyday. Stay strong …. or cry when you need to. Hugs & best wishes always, Sue from Australia 🙂 xoxoxo

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    1. Sue ,
      I’m in Australia too and my kids have this caused by congenital Lyme disease. Maybe we should talk ?

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  3. Thank you for sharing your story. My son at the age of 8 had multiple motor and vocal tics that started at 7, but exploded at 8.5. I didn’t accept the standard medical mantra either and that it was his lot in life. I can totally relate to , “Yeah, just fine” and trudge on. Diet helped some, but finally 4 years into it we discovered the root cause, mold exposure that was causing neurological inflammation and a host of other body system issues. I’m getting treated too, he inherited his mold genetic susceptibility from me, and I’m on my way to recovery too. Amy Yasko”s info was very helpful with the methylation info that has a lot of implications for how certain individuals are more susceptible than others to exposures that their bodies just have a hard time detoxing from. Looks like you have learned a whole lot medically you never dreamed you would have to know too. Thank you again for sharing your courageous story and never giving up! I believed there were answers for my son too even when others didn’t and dissed. Blessings to you and your family!!

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  4. I’ve always known there was so much more and have felt that the autism was a side effect of something medically wrong eith my son…but ask a pediatrician that or many other medical experts and you’re dismissed and laughed at. Your article is fascinating to me because sometimes I feel like I am the only one on this planet not “celebrating” autism, not ligjtin hhich ot up blue on April 2nd. I’ve been speaking out and telling the untold truths about the harddhips of autism and have been lambasted by the very community I was supposed to feel apart of. I learned very quickly after my book, The Dark Side of Autism, was published how unpopular it was to say anything negative about austism and the havek and heart break it bestows upon a family. Thank you for keeping a voice of reason and truth alive. We can absolutely love our children and feel heartbroken for what’s happening to them at the same time with every last breath we take.

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    1. I agree with you. Most doctors are so far behind the parents who live this daily. I wrote about the “celebration” piece recently here: href=”http://www.huffingtonpost.com/entry/lets-start-honoring-people-with-autism-by-stopping_us_58dbf66ee4b0487a198a5686″>

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  5. Bless you for never giving up. How often do we have to hear this vindication from people affected by all sorts of illnesses before the majority of the medical fraternity stop writing off anyone too hard to treat or diagnose (or the parents of such) as having it ‘all in their heads’ or being hypochondriacs? I hope your soon is on the road to healing. xxx

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  6. Thank you for letting me have release…your words felt as though they were my own.We are awaiting testing results on our 9 year old son who regressed at 18 months 6 weeks has felt like an eternity we still have 4 to go,praying for answers as I know in my heart… autism has always been medical.

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  7. Great article, thank you for sharing. It shouldn’t be a surprise that childhood illnesses are on the rise; with all the toxic chemicals are children are exposed to at such a young age we are opening up Pandora’s box to a litany of possible life changing illnesses. Constipation is so common today and he off label use of miralax just adds to the exposure of toxic substances. Our son was diagnosed with epilepsy, aspergers and many other mental health issues after five(5) years of off label miralax use. Finding the necessary help in a traditional medical setting is frustrating, time consuming and we realized pointless. After several attempts to get the necessary help we decided to find a naturopath; our sons seizures stopped almost immediately and that transformation we witnessed in the summer of 2015 was amazing. Glad to say our son is doing much better today, we still have some mental health issues but they’re minor compared to where we were just a couple of years ago.

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  8. A much needed testimony from the millions of devastated families dealing with this damage. As a 30 year Lyme sufferer, I am totally familiar with the road you are traveling. There are few medical circles where you dare speak the truth you have found from intense, educated study, unless you are prepared to be mocked, insulted, or marginalized by “experts” who absolutely know LESS than we do. My heart aches for families fighting this never ending battle. God speed, dear one!

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  9. My son has ‘undiagnosed’ aspbergers, and to make a long story short… He had craved dairy products to the point that his feces we’re generally extremely light in color. Once I removed milk from my son’s diet in FIFTH GRADE (after stumbling across an article when I was researching my own lactose intolerance) he slept through the night for the FIRST TIME IN HIS ENTIRE LIFE within 3 days! His ‘behaviors’ became so subdued and manageable that people now (he’s 28) just think of him as ‘ quirky’. Imagine of the doctor had suggested I remove milk from his diet as a toddler… His life is not easy, but he is a functioning adult. The medical community needs to wake up and accept that SOME autism has a remedy besides behavior modification. God bless you in your journey.

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  10. Coming from the “acceptance camp” as an autistic adult, your article made me bawl, honestly.

    Have you not even considered that autism, in and of itself, *is* just a brain wired differently and that acceptence *is* important and that you can accept a childs autism AND acknowledge other illnesses?

    You, as many others do, are confusing the two with eachother. When parents boast that their child’s autism is medical, and then get them treatment, eliminate dietary triggers, etc, and then claimed the childs *autism* was getting better, has it not crossed your mind that its possible for a child to be both autistic and chronically ill?
    That the improvement you’re seeing is not the improvement of autistic symptoms but rather that of the illness, and what you see leftover is a healthy AUTISTIC child. Because illness, comorbidities, and symptoms are not one in the same.

    Autism IS just neurodivergence, and it is an intristic part of any autistic person. Any illness along side that can and should be acknowledged but the illness is not the autism itself.

    Even if ALL of your child’s autistic behaviors went away after treatment, did you consider that maybe he just isn’t autistic after all and that you cant speak to the experience of whether or not autism should be praised because autism isnt what you were dealing with, but rather the AE

    You are confusing the two and harming autistics in the process

    Learn to speak to your individual experiences withput trying to undermine the words of actual autistic people who have worked for years for the accwptance and neurodiversity movement because based on OUR experiences of BEING AUTISTIC, we have come to the conclusion that it is NEEDED.

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    1. I’m truly sorry you felt hurt by my words. Yes, I started this journey believing my son might have “different wiring” but soon came to the conclusion that was a fallacy. Because my son loses characteristics grouped in the DSM under the umbrella of autism as his medical status improves, it is clear to me that in many cases, autism is medical. Please remember that autism is defined by behaviors alone. My son absolutely met criteria for autism when he was diagnosed therefore his autism diagnosis was accurate and not a mistake, regardless of the fact that autoimmune encephalitis caused his symptoms.

      I respect your voice and your perspective and I hope one day my son will be as confident in his identity as you are in yours. Removing his medical obstacles is one way I hope this will be possible for him. Please understand that the autism spectrum is expansive and complex, and though you’ve found your tribe, so to speak, of articulate autistic adults with similar points of view, that your perspective is not reflective of the entire autism spectrum. There is room for many different perspectives. Our kids who have a much more difficult time functioning in this world woukd benefit from you considering and speaking up on their behalf as well. Your voices are discouraging parents from addressing the underlying medical reasons for head banging, distress, tics, etc.

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  11. The acceptance movement isn’t about making parents accept when illness causes blindness, deafness, paralysis, or any number of other issues. It is about accepting your child for who he or she is, not the illness that child suffered…. both now, and when your child has grown up. And to the other commentators here, there is this assumption that if someone develops autism-like traits from illness, that autism is caused by illness. This is much like saying that because some people are blinded in car accidents, children born with blindness must have been in a car wreck. Difficulty with sensory and social processing, often accompanied by executive function challenges, does not limit intelligence… although an illness as harsh as what this child suffered can ALSO affect intellectual functioning. There is an amazing community of people who happen to be autistic… with active voices starting in teen years regardless of how those voices are expressed (spoken, typewritten, AAC, etc.). Businesses are actively seeking people who happen to be autistic because of the strengths it provides. Illness creating autism-like challenges, and those challenges being labeled autism, does not invalidate the huge diversity of unique profiles that fall under the umbrella term… and just as you would not your multi-disabled child whose challenges include but are not limited to autism to be sidelined, neither should you find autism to be tragic and thereby sideline so many people whose comorbid issues, if any, are different than your child’s and whose abilities include expressing themselves in a way that you can read or hear. Acceptance is about … accepting people.

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    1. Michelle, my sentiments, exactly. While I certainly have empathy for the article writer’s struggles, I think it’s important to clarify that the Autistic Acceptance movement (at least as practiced by most autistic self-advocates) does NOT have a problem with parents seeking medical help for the very real medical problems that sometimes accompany their child’s autism. We understand that a variety of medical problems can co-occur with autism, and we absolutely support children getting medical help for these issues, not to mention any supports at school that these children are entitled to. Nobody – including people with autism – wants to see children suffer needlessly. And I’m glad the article writer was persistent even in the face of resistance by doctors, to find out what was actually causing her child’s problems. Here’s what the Autism Acceptance movement is really about: Autistic people want others to accept us for who we are, just as every other human being wants to be accepted for who they are. At support group meetings and the various conferences I’ve attended, I hear young autistic people say over and over, “I just want people to accept me for who I am.” Then I hear others accusing them of selfishness or insensitivity for simply expressing this very human desire! It’s heartbreaking and infuriating!! So often when people with autism talk about wanting acceptance, we’re accused of having no empathy for parents. This is TOTALLY CRAZY!! There is nothing selfish or insensitive about an autistic person wanting acceptance, just like every other human being wants acceptance. Why can’t we have empathy for BOTH the person with autism AND the family. This isn’t an either/or thing, or a zero-sum proposition, as so many in the autism community seem to imply. There’s enough empathy to go around.

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      1. Thank you for your reply Debi. In the circles I travel in, families *do* accept their children with autism. Many of us recognized however that our children were experiencing significant distress related to medical issues. I accept who my son is as a person 100%–all I want is for him to be content in his own skin.

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  12. I don’t have children, let alone a child on the spectrum… but I have several friends who do… I know words like this are healing balm to their hearts. Thank you for sharing your family’s experience. Thank YOU for being a warrior.

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  13. Moron. Autistics can get encephalitis, just like neurotypicals can get encephalitis. If you have a brain, you can get encephalitis. There is also a HUGE difference between autism and autism-like behaviors. A neurotypical can have autistic-like behaviors without being autistic. The difference being that those behaviors are not caused by their neurology (as it is in the case of autistics) but by their behavior and psychology, so they can overcome their autistic-like behaviors, whereas the autistic probably cannot. Leave science to the scientists. When you get a medical degree, you will be allowed to diagnose.

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    1. Autism is defined entirely by behaviors, so your comment makes no sense. If you have a certain group behaviors listed in the DSM, you receive an autism diagnosis. If two years before or two years later you no longer are exhibiting those behaviors, you no longer meet criteria for diagnosis of autism.

      Perhaps you missed the part about my son being diagnosed with AE by a prominent neurologist who stated this to be the cause of his autism. I’m leaving it to the medical doctors.

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      1. Actually, according to the authors of the DSM, if autism-like behavior turns out to have a different cause (such as in the case of your child), the diagnosis shouldn’t be autism. There are other conditions (such as Fetal Alcohol Syndrome, CPTSD in a small child, or AE in your case) that can mimic autism, and once the cause of the symptoms is found, the diagnosis should be changed, according to DSM authors. Medicine is an inexact science, and yes, doctors can be wrong. That’s one reason why you have malpractice suits.

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      2. You are right the term “autism” simply describes a collection of symptoms look different in every child. Maybe if we stopped calling it “autism” and instead referred to it as what it is “a messed up immune system” more children would get proper medical intervention. But most doctors are just starting to learn about autism and the immune connection. But the good news is that the medical revolution has started. Our doctors are finally starting to learn that when a child’s compromised immune systems can be repaired and starts to function again, children get better. And some like my son, can even fully recover to lead “typical” lives. But there is much more work to be done, since the general public and many doctors don’t know this is even possible. In time everyone will know autism is medical and TREATABLE but our doctors never got Autism 101 in medical school so finding one who knows how to treat this medically still remains one of our biggest challenges.

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    2. Irish Vidal, did you not read the tons of articles that have come out in the last year linking Autism to maternal antibodies and maternal infections, gut inflammation, and the brain’s immune system being overactive, as well as immune disregulation? If you looked at the symptoms caused by Autoimmune Encephalitis and Late stage Lyme disease as well as viral infections, they match those of Autism. I have a son with Autism and he was also found to have Autoimmune Encephalitis and chronic infections. As we treat these I notice his symptoms improving. Personally, I love him for who he is and will not celebrate any labels slapped on him. I will celebrate his life. But watching him cry because he has no friends and thinks he will be alone all his life, seeing him throw up almost daily when his infections surge out of control, seeing him frustrated because he cannot do other things physicially the cool kids do because of low muscle tone, that’s not fun, watching his anxiety spin out of control in public, It’s not something worth celebrating.

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  14. You are one strong and smart mom. God has clearly given you so many gifts to be able to articulate your heartache and your knowledge so you can help others. Thank you for being Brave. Thank you for being a fighter. Thank you for sharing. I hope millions will be able to read this and will be encouraged.

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    1. AI: I beg to disagree–“autism” can be
      1) vaccine injury
      2) cerebral folate deficiency syndrome
      3) mito-disorder/disease or pans
      4) or a combo of all of the above…
      Now, the real issue is finding Drs who will run down symptoms to find out which ones it is…

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  15. Thank you for your strength & powerful vulnerability to share your story. May your son find health & your family find relief & peace. … I’ve observed lots of bewilderment & secret shame associated with this diagnosis, the symptoms of which can seem so varied & subjective. It’s like each autistic kid is their own unto-themselves universe. …. My 6-year-old son was diagnosed with autism at age 4. In doing my homework, I learned that the number of kids diagnosed with autism enrolled in our local school district (LAUSD) has increased by 6x in the last 12 years! Clearly *something* in the environment (vaccines? pollution? heavy metals in chemtrails?) is causing this epidemic. But it also seems like a catch-all diagnosis. You’re going to encounter inevitable resistance when you dare question anyone’s sacred cows. … From what I’ve observed, each diagnosis is a private tragedy for parents left to fend for themselves & sort it all out. Some find improved behavior from therapy, alternative treatments or diet tweaks, and so many others never find solutions & are left to cope with a hellish day-to-day reality of a kid whose future life prospects seem pretty bleak. Of course this is a tragedy & a struggle for parents–so thank you for admitting that. … My son was flagged in preschool. It seemed to my husband & I that our son was flagged because he didn’t want to follow directions & was high energy & generally wasn’t conforming to the program. I consider(ed) him a strong-willed nonconformist with an engineer brain. (All the men in my family are engineers, which is truly a different kind of brain. Also my husband & I have spent our whole lives challenging convention & not conforming to societal norms.) But the preschool teachers thought otherwise & said he also wasn’t making “enough eye contact.” He’s completely unvaccinated & super healthy. It took quite a bit of maneuvering to even get him into the California public school system with recent legislation. (Bottom line: Stand your ground. They want ALL kids in the system & the SB 277 Mandatory Vaccine law intends to intimidate you into conformity. Don’t allow it. We got a note from the doctor who also tried very hard to intimidate us into conformity with his obviously often repeated script. But they treat you differently if you are bold; if you’re not asking permission but rather telling them what you need. Again, no one wants you to question their sacred cows–especially not doctors & school admins.) In our case, with a completely unvaccinated kid, the teachers & school admin people already treated us very awkwardly anyway. And when they flagged him for autism, it got even more awkward the way they spoke of “his behaviors.” It just seemed so stigmatized. My husband & I didn’t buy it from the start. All the “symptoms” seemed to be pretty nebulous in the first place, many indistinguishable from obnoxious 4-year-old boy antics. (For example, the teachers told us: When my son & (boy classmate) get together, they stir up the whole class & then the students won’t listen to the teachers. … Secretly, I thought: Sounds like natural leadership ability in its unrefined stage.) They suggested we take him to a psychologist. His “diagnosis” came from a county appointed psychologist who spent only 20 minutes with him alone and BAM suddenly my bright, eccentric, nonconformist son is a statistic. (The preschool teachers would tell me stuff like: He’s amazingly bright & talks about time travel & Nikola Tesla & satellites BUT he isn’t sitting down at the table to eat like all the other kids.) Now he has an IEP for autism & has been relegated to the “aut class.” At first I felt this was a huge disadvantage to have this label, especially when I watched him start imitating the autistic behaviors of his classmates! Never in his life had he walked on his toes & suddenly at age 5, he’s starting that after attending the kindergarten “aut class!” I asked him: What are you doing? He says: Oh I’m walking like (classmate) does. … Very frustrating. I considered home school at that point. Now he’s in first grade & he’s still in “aut class” but they’re encouraging him to “mainstream” as they apparently consider him on the mild end of the spectrum. (He’s less than thrilled about this saying the mainstream class is “so boring.”) He’s articulate, very social, observant, intelligent, wise for his years & completely into whatever he’s into (this hyper focus was also part of his being flagged). However, I’ve come to realize that perhaps his being labeled autistic is a huge blessing in disguise. First off, he’s very accepting & kind to all sorts of people regardless of disabilities or eccentricities. Also, they expect so little of him at school which gives him a long leash to be his own person. Also the teacher to student ratio is awesome. It’s like having alternative private school for free. That’s huge for us, that he gets that level of freedom in public school. Also, he isn’t getting crushed into the meat grinder of common core. We’ve never “accepted” autism for a second, thus we never considered his diagnosis some tragedy. Also, we feel that it’s like Krishnamurti says: It’s no measure of health to be well adjusted to a profoundly sick society. … He is who he is. We’re not trying to make him fit any artificial mold to be some future wage slave drone. We want to foster & hone his natural abilities, not push him into the excess testing, fear of authority & homework drudgery inevitably waiting for “normal” public school kids. That’s our story of autism non-acceptance.

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  16. Excellent article on biomedical ailments that lead to “autistic” symptoms. These children and adults need medical treatments — backwards thinking is preventing them from being healthy, feeling well, and reaching their maximum potential and happiness.

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  17. I am an advocate/activist in the eating disorders world. We also struggle to get the word out about the genetic and neurobiological aspects of these and fight entrenched belief systems from the medical community and society at large. What a powerful piece, I am sorry you’ve been through this. I have a friend whose son had late diagnosis PKU and knowing that he could have been treated from the beginning and never suffered the severe cognitive disability had people listened to her . . . I hope you and your family experience peace and healing. I will share this widely.

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  18. 8 years ago in my late 60’s I was literally struck down, barely able to walk by what was, a short time later, diagnosed as M.E. an autoimmune disease, Myalgic Encephalomyelitis. Thankfully the disease was only disabling for a year. I have relapse bouts of a few days occasionally, which I have learned to manage. Dr Andrew Wakefield was once asked at a QnA in a meeting on Vaccine Injury why adults didn’t get Autism, he replied that they do, it is called M.E. an autoimmune disease. Like most diseases of this nature it has a spectrum from mild through to complete incapacitation and pain.
    I still have no clear idea of the cause of this illness. It could have been a flue vaccine I was given a few months prior to it manifesting. Your article was so beautifully written and so moving I simply wished to point out that vaccine injury has now been very well established as the cause of many autoimmune diseases, mainly because of the adjuvants used in them which cause brain injury.
    I send you my deepest sympathies and I have hope for your child’s future since there is so much happening at this present time in vaccine injury awareness, and on the immune therapy front in clinical research and trial applications.

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  19. THANK YOU FOR SHARING & NEVER GIVING UP-YES I AM SCREAMING!!! THANK YOU FOR THIS ARTICLE!!!!!

    What pisses me off is that Autism Speaks can call celebrities & give them the top 10 medical treatments but does NOTHING to help “regular” folk….did you hear that interview with Toni Braxton—she got a call from the head of Autism Speaks, then followed their advice, and a few years down the road hers sons autism symptoms dissipated & he is almost “recovered” but, in the interview even Toni Braxton FAILED to mention those interventions—YES AUTISM IS MEDICAL!!!!!

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  20. Thank you for writing about your experiences. They have given me a lot to reflect on, as I experienced conflicting emotions whilst reading it. As a high-functioning ASD who was never diagnosed as a child or offered support or services, the popularisation of ASD and Asperger’s in particular was like a lifeline to me, a term to use to explain why I had struggled to appear ‘normal’ my entire life. I felt empowered by having a label to give people a point of reference. But you have shown me another side to the story, and am truly sorry that in the search for help you and your child have been treated with such ungracious and dismissive attitudes.

    The presentation and symptom profile of ASD is so broad that a generic approach ie all pathology or all behavioural is entirely inappropriate and always has been, but the fact is that other physical illnesses and especially digestive illnesses are frequently comorbid with ASD, and other conditions can promote the same kinds of behaviours. I’m inclined to agree with those who have taken a moderated approach in their comments – that there are a range of medical problems associated with ASD, but that they do not make the person, so to speak. Eliminating gluten from my diet in my early 20s changed my life and improved my coping capacity 100-fold, but it didn’t make me neurotypical.

    Thank you for providing that informative list of possible conditions that could contribute to autism-like symptoms – people need to know what to ask doctors to test for, as it sounds like they lack the motivation or possibly even the education to identify those as possible causes themselves. Knowledge is power, as they say.

    Regarding vaccines, I have not encountered compelling evidence that any vaccine causes neurodegeneration except for the Gardasil vaccine, but I noticed several people make reference to this evidence in this comment thread. Could you share links to these studies demonstrating evidence please? I am not being facetious, but without providing high quality evidence the clarion cry from anti-vaxxers very clearly infers that in their judgement I should have died of measles or been crippled by polio rather than live as I am, and frankly I find that offensive.

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    1. Thank you for your insight and for sharing your experience Melina. I’m always eager to learn and understand my son better by hearing from adults with autism or autistics as some prefer to be called. I have some vaccine research here: https://walkinginquicksand.com/2017/03/22/id-rather-have-a-child-with-autism-than-a-dead-one-the-latest-science/ I would also suggest Googling the CDC Research Scientist Dr. William Thompson and consider viewing Vaxxed with an open mind. Best to you and thanks again for sharing your experience.

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  21. Thank you Ashlyn! I walked a similar path with my sons. Your article had me crying so hard! We were all diagnosed with Lyme disease and thankfully with the help of some very passionate doctors, naturopaths, osteopaths and a lot of time in the kitchen we are all doing much better. I also didn’t sleep through the night for 7 years due to my sons nightly screaming. Our younger son still wakes up screaming some nights and we’re still working on improving our immune system function, but where we are now compared to the nightmare we were living 6 years ago with 2 young sons- is truly a miracle. I believe if more people could understand the miracle of accurately treating & or supporting the body in dealing with chronic infections, mitochondrial dysfunction, genetic issues, detox they would be more supportive.

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  22. Brilliant, well written article. Oh those holes in the wall – I so remember that heart sinking feeling that this is something I can’t just clear up when he finally falls asleep.

    Acceptance is wonderful but it won’t look after my 22 year old son when I’m no longer here to do so. Action and research is what we need. Oh, and more people like yourself that are willing to share.

    Good luck with the next step…

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    1. Elaine, you are so right. We all love our kids in spite of the difficulties autism brings. But our biggest fear is what will happen to them after we are gone. I met this an amazing young woman on Facebook. Nicole is 27 and has autism. Nicole lives alone in Minnesota. Her mom is in a nursing home and she has no other family. So it is just her and Simon the cat. She just got her first job after a little encouragement from all the parents on my Facebook page who are also worried about what will happen to their kids. Now Nicole is proud of all she has accomplished, but she still has stomach issues and other medical problems.

      People like Ashlyn being brave enough to share, action and research are the things that will change outcomes and help our kids reach their full potential. Helping my son recover to become an aerospace engineer is the hardest thing I have ever done. Children are recovering from autism and yet, the general public and most doctors are unaware this is even possible. That will never change unless we stop just lighting it up blue, and do the research and science that will help more kids.

      We must never give up until every child is healed and our children get the medical treatment they need and deserve. I wish we would just stop fighting among ourselves and come together as one voice and the thing most of us can agree on. Autism is medical and TREATABLE!

      ALONE there is little we can do about autism. TOGETHER we will be unstoppable!

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  23. My son is 14 and has a calcium deposit on his right frontal lobe of his brain…it was ‘discovered’ after a full blown grand mal seizure during his first day of high school in the lunch room, no pressure there-right, no I am battling for any answer I can grab hold of. He is not maturing like other and the fits of rage–mirror the hulk!! I am at my total wits end!! I understand all that you are saying!!

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    1. Cathy Hall, this article may help. Rage is very, very common with any type of brain injury/brain condition. This article lists a few meds like Propanolol, that can help with that. I have a family member on it, it does work well. Also helps with socialization. There is also an epilepsy med, Carbmazapine/Tegretol, list on there that has been found to help.
      http://www.nytimes.com/1990/08/07/science/when-rage-explodes-brain-damage-may-be-the-cause.html?pagewanted=all

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  24. I have two sons…now 24 and 21 with autism. We have tried every magic bullet and therapy. Are they better or are we so desensitized, we no longer grasp what a “normal” life involves. It is medical. There is something which caused this which medicine has either failed to recognize or refuses to. Vaccines? Annuities for doctors and big pharm. Of course there is no link because the powers at be don’t want it to be found. Studies can say whatever you want them to say if you throw enough cash into them.
    I love my boys and always hope for a brighter day tomorrow. Thanks for this!

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    1. This is the hardest thing I have ever done and unfortunately all doctors are not created equal. Check out this blog. http://autism-and-treatment.com/2016/11/04/all-doctors-are-not-created-equal/
      Sometimes I have survivor’s guilt because I want recovery for all our kids. Here is a book by Ann Millan who didn’t start medical treatment until Robin was 28. When she started, Ann’s goal was to stop the screaming and self-injurious behavior. She had no idea that because of getting medical treatment, Robin would one day live independently, drive, and have two jobs. Remarkable story of why we can never give up until we find the answers to help our children. https://www.amazon.com/Autism-Believe-Future-Independence-Ann-Millan/dp/145022184X/ref=sr_1_1?ie=UTF8&qid=1443792375&sr=8-1&keywords=ann+millan

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  25. Thank you. Thank you. Thank you. I have struggled to think how to explain my son’s issues to others for years. I haven’t known how to, so I’ve just kept quiet. Then you go and say exactly what I wish I could do about this. My son has a diagnosis of Autism but now he has been diagnosed as having PANS (brain inflammation caused by an immune dysregulation, pretty much like AE). No one knows what life is like for him or us. If I say he has Autism people recognise the name but then just assume he is a happy little boy who just happens to have a few issues with socialising or sensory sensitivity. If I say he has a medical condition caused by brain inflammation they look really concerned and ask how things are going when we next see them. My son really suffers….with anxiety, fear, OCD, separation anxiety. He can’t sleep in his room or eat because he is scared at the moment, I will never accept or celebrate a condition that can cause that. Perhaps there are different types of autism. If there is one where children are happy and love life but happen to have a differently wired brain then, hell yeah, I will celebrate it and accept it. But the version my son has and that yours has and that so many others have is one that needs treating, not accepting and celebrating.

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    1. I believe the what we call “autism” is just a label we to describe a set of symptoms that look different in every child. Ashlyn is absolutely correct in calling it autoimmune encephalitis and saying it is TREATABLE! This is the result of immune dysfunction, and it a very complex condition. But when you treat hidden viruses and infections, kids can learn what they couldn’t before. I know that is true! My son is now an aerospace engineer because we treated his “autism” medically. This is the hardest thing I have ever done, but don’t ever give up no matter how hard things get, because the results are so worth it!

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  26. I am very interested to hear more about how your child’s AE is being treated. Our teen has been treated with IVIG for PANS, and is on some supplements for some metabolic differences, and it seems to be helping. What’s working for your child?

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  27. I am so glad you wrote this article. My son with Autism was found also to have first PANDAS, then “Dopamine Related Autoimmune Encephalitis”, and he has three antibodies against his brain at high levels (anti-tubulin, anti-dopamine receptors 1 and 2) and also has low levels of three different types of thyroid antibodies I passed onto him. If they raise above threshold he would be considered also to have hashimotos Encephalopathy, a second type of AE, which I have. My other son was found to have PANDAS, but no autism. I am so glad we kept pursuing treatment and a “root cause”. My son went from being extremely aggressive and hyperactive to having friends he talks with at school, being fairly independant for his diagnosis at 13, and having dreams and goals for his life. He still has behavioral and mental health struggles with flares and we are now trying to knock out the last of his infections and get IVIG for him. God bless you guys, and please reach out if you need help finding a good doctor for his condition or resources. I am happy to help however I can. It’s a long, hard road and I am so sorry you went through so much BS trying to find your way.

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    1. RM,
      Thank you for this post. We must help those who come behind us. I share the names of the good docs with the parents I help. I never post them publicly and only share these names privately. We must protect them. They put their licenses on the line to help our kids. But please email me at marcia@autismandtreatment.com with the name and location of the doctor who helped your son.

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  28. I’m so sorry for all the suffering you and you family endured and so glad you have some medical answers! I can’t begin to explain how much I identify with being the odd one out or the one who’s “humored” when I mention that autism is medical. That awareness is all well and good, but medical treatment should go alongside it. I’ve found “awareness” means just that, accepting without trying to change them. I know there are some whose place on the spectrum enhances their lives. However, most people, most children, are suffering, so any “enhancement” is overshadowed by the physical suffering. We need more doctors to be honest and inquisitive from the start. My son is an absolute blessing, but I look forward to the day his physical health is enhancing his life not detracting from it.

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    1. What we call “autism” just like Ashlyn said is really autoimmune encephalitis. This is medical and full recovery is possible when it is possible to correct the problems with our children’s broken immune systems. See how we helped Ryan become an aerospace engineer at http://a.co/g54aTzz.

      This is hard work, but so worth it! And you are no longer odd man out. Currently, I’m working with Dr. Sue Swedo (NIH/PANDAS), Dr. Richard Frye, doctors from USC Keck and UCSF to develop additional Centers of Excellence Excellence at our major teaching hospitals to treat what we mistakenly label as “autism.” to treat autism medically at our major teaching hospitals. But until that happens worldwide, I wanted to share this blog post with you about the method I use now to find the right doctor http://autism-and-treatment.com/2017/04/11/find-right-doctor-beat-autism/

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  29. I think I have read this a dozen or more times, shared it and ask everyone to read it. I am in tears, like you, this is our story, the endlessly seeking help for the blatant illness the highest ranking doctors choose to over look and dismiss. My son regressed 23 years ago and I got busy doing my own research, and was there when the DAN! was created, Autism One, and so many other biomedical educational roads. We recovered our son’s autism, but not the disability that vaccine damaged caused, not the damage caused by endless seizures or 3 strokes. I have been screaming about vaccine damage for 20 years and yet, even this week, was told by a young mom that such things simply do not happen. I do not know when this madness will end. For sure the young Moms of today are still deaf to our stories for the most part. Keep sharing, and thank you for writing the most brilliant piece I have read in a very long time. You said everything I felt and feel. My best to you and your family.

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  30. It is frightening how do many children are misdiagnosed when they have AE. My son is currently undiagnosed however receives IVIG and is regaining control over his body. Such a horrific disease. I wish your son well for the future 7 years is such a long time to watch your child suffer and to know in your heart that he is sick x

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  31. Hi! I write a blog called The PANDAS Puzzle and have shared the article you wrote about PANDAS/PANS on my facebook pages. There is a section of this article that I would also love to share, with credit to you. “know that when they say they’re doing well they are likely just barely surviving. Acknowledge that you recognize how challenging this must be for them. Give them a hug. Tell them they’re doing a fantastic job and you think they’re warriors. Tell them you would love for their child to come over and play with yours, that you’ll hide the blue Popsicles, and it’s alright if their child flaps his arms or repeats the same phrase a million times. You’ll talk to your kids about loving and accepting our kids exactly as they are today, medical conditions and all. Show the same understanding you would for a friend whose child was suffering from any other medical illness. Demonstrate you understand the weight of autism” (or PANDAS.) Just wanted to check with you first and make sure it’s okay to repost on facebook. Thank you!

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  32. Thank you for sharing your story. It sounds similar to our son’s path. We’ve had a tough time accessing care. Would you consider sharing your physician’s info? I saw the list of doctors on the alliance website but would appreciate going to a practitioner who seems to be able to support our kids.

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    1. Hi Ali, I would also suggest checking out the MAPS website (Medical Academy of Pediatric Special Needs) or the PANDAS Network doctors. Some of them in addition to the AE Alliance may be able to help.

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  33. I’m not sure I could love this any more if I tried. Thank you for understanding. Thank you for sharing. And most importantly, thank you for giving us hope.

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  34. How fabulously put together – something everyone with an autistic child will recognise – though sadly, not many of the professionals who treat them.

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