What I want you to know about having a child with autism and knowing it is not “just autism”

 What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is by Ashlyn Washington.

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, for the love of all things holy, 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 importance 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.

What I want you to know about autism

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is by Julia.

Listen—most of what you think you know is wrong.

Rhetoric about autism focuses on parents, siblings, caretakers—the “burden” of an autistic person’s existence on those who love us. Very few people are willing to listen to our voices, read our words, or allow some of us access to technology that can assist communication. We are not silent so much as we are silenced, and non-verbal does not mean non-human.

Autism is not an epidemic.

There have been autistic people as long as there have been people. Many well-known historical figures are speculated to have been on the spectrum by historians and psychological professionals—some of the most notable include Thomas Jefferson and Albert Einstein.

Far greater in number, though, are the autistic people of past generations who didn’t make it into the history books—the eccentric elderly uncle who collected baseball cards and never got the hang of using the telephone; the 18th century farmer’s daughter who never spoke, sitting day by day at the spinning wheel, the repetitive motions of her hands helping to provide for the family who provided for her. We’ve always been here, but before labels we could more easily disappear into the background. The rate of autism diagnosis is what has increased, not the rate of autism.

Autism is not a missing puzzle piece.

Imagine that you received a puzzle as a birthday present, and when you had matched the colors and shapes you realized that the image was not the seascape depicted on the box, but instead a cartoon castle. An entirely different picture, but still, in its basic nature, a puzzle. There is nothing missing from our minds, and our minds are still human minds; their neurological pathways and their thought processes simply fall together in different ways.

Autism is not a thief that steals children in the night.

We are not changelings, we are ourselves. You can’t turn back the clock and recover a phantom person who never existed in the first place. You can train a person not to act autistic, but they are still autistic; they are just constricted, suffering, made to feel that they are broken for being themselves, wholly.

Autism is not a curse. Sometimes, it can be a blessing.

When I flap my hands in excitement, the self-stimulatory motion sparks my feelings further, allowing me to express and exacerbate my feelings. Quieting my hands to conform to the norm is like not being allowed to laugh when I am amused, because laughing is wrong; it’s like forcing fireworks to un-explode. When I’m upset, rocking my body back and forth slowly lulls me back to calm. Keeping myself rigid is like not being allowed to cry, because crying is wrong; it’s like trying to still the tides. When I listen to music, the chords vibrate through my bones and inside my brain; I love Tchaikovsky because he makes me feel like I am flying, or falling, or floating.

Being autistic helped me love words and shape them to my own ends. Echolalia is a beautiful word: it comes from Greek, the name of a nymph and the word for speech. It means catching hold of a word that you have heard or read and repeating it. Autistic people sometimes echo the end of other people’s sentences. I get words and phrases stuck in my head and on my lips; I mumble them under my breath over and over until I can find a way to write; I write poetry. Sometimes when I am upset I can’t find words to speak at all, so then I write.

Autism does sometimes mean that I suffer.

I am told that I need to understand other, “normal” people, to learn the way their minds work so I can walk and talk and look like one of them. Other people do not try to understand me. The most common forms of expression are the standard, and there is no room for difference; there is no room for me. No one thinks about why I express things as I do. I have to work constantly to understand, to change; anything else invites criticism or abuse. No one works to see things my way, to accept the way I am, to let me live on my own terms instead of pushing me down.

Sometimes people say labels do more harm than good. As a child, before I was diagnosed, I was called a freak more times than I can count. I would rather be labeled autistic than a monster, than a problem to be solved, than a statistical anomaly, a burden, a tragedy.

I have been told, casually, in passing, by people who didn’t know I was autistic, that they would rather be dead than have my disorder. I have been told, casually, in passing, that I would never be asked out on a date; that nobody would ever love me.

I have been told, by my brother, to walk a few paces away from him in public so people wouldn’t know we were together. I have heard my brother tell another boy that he wasn’t my brother; we just had the same last name.

I have never understood why it is us who are made to feel guilty, who are told we lack empathy and compassion, when it is non-autistic people who behave like this.

Listen—you can change this. Never assume that because someone is not a walking stereotype they cannot be autistic. Never believe that because someone, or something, is different it is wrong. Always try to understand. And above all, listen. Listen to our voices; read our words. Don’t believe everything you hear; most of what you think you know is wrong.

And to my fellow autistic people reading this; to anyone for whom my words stirred something inside them that they don’t have a name for yet—you are wonderful, you are whole, you are not alone.

Resources:
Autistic Self-Advocacy Network (http://autisticadvocacy.org/)
Autism Women’s Network (http://autismwomensnetwork.org/)
Parenting Autistic Children with Love and Acceptance (https://autloveaccept.wordpress.com/)

About the author:
I am an autistic college student. I was diagnosed at age seventeen after years of research and wondering. I also have ADHD and anxiety. I’m a Christian, a feminist, a choral singer, and a history major.

What I want you to know about having a child with Asperger’s Disorder

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest posts is by Lauren.


My son is diagnosed with Autism Spectrum Disorder (ASD), high functioning autism- aspergers. But that is just a label. He is not autism, he is not autistic, he HAS autism. That may just seem like semantics to you but to my family it is critical. Your child is not brown hair, or blue eyes, your child has these features just as my son has a collection of traits that collectively are known as ASD. I love about half these traits which we are often informed as negatives: My son’s amazing memory, his formal speech, his attention to details. Other traits make me crazy: his difficulty separating fantasy and reality (we have to be very careful what we watch, read and say), his difficulty reading people (social outing can be very challenging). Most of all I hate how anguish he gets. No one wants to see their child so stressed that they have lost all control, or your child hurting themselves (we now bite our finger nails down till they bleed, before we had any help we banged our head on walls and scratched and pulled at our testicles till they bleed).

Development has been delayed and lop-sided for my son. For example, it took a very long time for my son to talk but when he did, he spoke in a very formal fashion and said rather grown-up phrases like “I am delighted to see you”. Despite his above average IQ and his ability to hold adult conversations, he at almost seven is still struggling to read simple words and hand writing has been its own struggle requiring many hours with the OT. School has been by far our biggest challenge so far . . . . finding a community that supported him, that would help him achieve his best and not just see him as a stupid child and let him rot in the corner.

I want you to know that we have good days and we have bad days. On good days I can almost forget that my child is ‘different.’ He loves me and his dad, he plays with his baby sister, helps me cook and walk the dog, plays with his friends. On bad days I worry about the future of our family. Will we be able to always get the care and support my son needs? Will his violent melt downs get so bad that it is no longer safe for the rest of our family to live with him? Will his anxiety lead him to self-harm? Will he commit crimes because he doesn’t really comprehend what he is doing? But most of all I worry if there will always be a place for him in our community. Will people accept him for him? Will they see the funny, kind-hearted person I see? The person he is, increasingly more and more as we get him the help he needs. We have been blessed with amazing therapists doctors, teacher, hair-dressers, dentist and friends who all play a part in making our lives easier and better.

I want you to know that I am a mum just like all mums, no better no worse. I didn’t cause this through neglect or lack or bonding. I did everything ‘they’ say you should. And after hours and hours on the floor crying I have come to realize that my child is indeed wonderfully and fearfully made by God. And for whatever reason this is the package my child was born with. I am not super-woman or any more amazing than any mum I just doing what all of us do, loving my kid trying to get the best for them.


I want you to know that there is more than one person in my family and as the mum of this family I need to balance all our needs. There are four of us in total and we are not successful unless we are all reaching our best. It is not success for us if my son gets all the therapy he needs but we are bankrupted in the process, or if I don’t have time to bond with my baby girl because I am constantly driving my son to appointments. My husband and I have the right to have happiness. We didn’t give up our right or need to be people in our own right when we became parent we will not succumb to the pressure and forgo our relationship.

I want you to know that I could not love my son anymore, I wouldn’t love him anymore if he didn’t have Aspergers. He is amazing in a million ways and yes, his young life has had more obstacles than I would have liked it to but it is these experiences that have shaped him and our family. I look at us on a good day (and there is increasingly more) and I am very happy with how we are all traveling. 

What i want you to know about having a child with autism

What I Want You to Know is a series of
reader submissions. It is an attempt to allow people to tell their
personal stories, in the hopes of bringing greater compassion to the
unique issues each of us face. If you would like to submit a story to
this series,
click here. Today’s guest posts is by Mom In Two Cultures.

New statistics from the CDC indicate that the number of kids with an
autism spectrum disorder (ASD) is now one one out of every 88 kids, or one
out of 54 for boys. At my house one out of three is on the spectrum and
another one of the three is eyeing it, so here’s what I want you to know
about autism.

Kids with autism have what’s called a pervasive
developmental disorder
. Post diagnosis, I quickly learned how totally
appropriate this designation is! Autism impacts every aspect if my son’s
life–his relationship with food and sleep, his experience in school,
what he obsesses about, the way he sees, hears, smells, and feels, how
he understands what people say and do. In other words, essentially every
point of contact he has with the world around him is impacted by
autism.

It also impacts every aspect of our lives with him; it’s
pervasive because no one in our support network escapes his autism
unscathed. Everyone who interacts with him has to have a deep
understanding of his dietary needs. They also have to understand how to
talk to him so that he can understand what they are saying. They have to
know the routine and be able to stick to it. The have to be infinitely
patient (especially when he interrupts for the millionth time to explain
a certain Lego creation). Most importantly, they need to know what to
do if he has a meltdown.

When my son has a meltdown, time stands
still. He’s so loud, we couldn’t carry on a conversation if we wanted
to. He’s a danger to himself and others, and he’s totally out of control
of his words and thoughts. When he melts down, I have to drop what I am
doing, go to where he is, and try to talk him off the ledge. If that
doesn’t work, I have to physically restrain him until I can walk him to
his safe zone where sometimes (but not always) he can calm himself down.

Meltdowns happen when he is overwhelmed, and he can get overwhelmed for
myriad reasons. Maybe he didn’t sleep well. Maybe he’s getting sick.
Maybe someone said something he couldn’t understand. Maybe Mom is a
little tired. Maybe there’s a bug on the window sill. Maybe Sister is
singing too loud. Maybe she isn’t singing loud enough. Maybe Dad didn’t
answer the question fast enough. Maybe his sock has a tiny hole. The
list of possible triggers is maddeningly endless, and there is no way to
completely eliminate them. We do our best by maintaining vigilant
consistency in our routine and our diet. If it’s not on the schedule, we
don’t do it. All spontaneity is long gone, along with our sense of
peace and security.

When you’re handed an autism diagnosis, you
aren’t also handed an autism handbook. That would be way too easy. Instead,
you’re given a list of suggestions and sent out on your own to make
sense of it all. In our case, our list said he might benefit from
occupational therapy, he should join a social skills group, he’ll
probably be bullied, so he’ll need support in school, and if the sensory
stuff gets to be too much, he might need medication. Oh, and don’t
believe the stuff you read about diet. I think none of that’s true, and if you
read it, it might scare you.

See when you have a kid with autism
you also unwillingly stumble into two very contentious debates–one is
about the role of vaccines in causing autism and the other about whether
autism can be “cured” with diet, supplements, and other interventions.
Your doctor can’t help you understand these debates. In fact, most
pediatricians know surprisingly little about ASD and what to do about
it. If you’re lucky, like we were, you will at least have one that’s
willing to consider the information you present about these issues and
order the appropriate tests or refer you to the appropriate
professional.

The thing is, there is no road map for any of
this. It takes a good year post diagnosis to figure out how to start
getting the services you need. In our case, it took another six months
to understand enough about the diet stuff to embark on a gluten free,
casein free, mostly organic diet. It all takes time. It all takes money,
and meanwhile, you’re still living with a kid with autism.

And
you can’t escape your life. You inhabit it every single day with the
knowledge that it might not get easier and that the only people who
really understand what it’s like to have an autistic kid are other people with
autistic kids. We’re like an exclusive members-only club full of people
who really don’t want to be there.

You’re lucky you can’t join thus
club. Please know how lucky you are. My son’s case is relatively mild.
He can talk. He doesn’t run away or stay up all night or self injure.
So, we’re lucky, too. I know that, and yet, I can’t help but mourn for
our lost ideals and hopes and dreams.

It’s taken awhile for me
to accept that this life is mine, and as I have, I’ve come up with a
list of things I want people with “neurotypical” (aka non-autistic) kids
to learn from my experience.

Here you go:

  1. Know how lucky you are.
  2. Don’t judge the parents whose kid is total chaos. Chances are he’s
    melting down, sensory over-stimulated, or completely confused by the
    social cues coming at him from all sides.
  3. Don’t be afraid to reach
    out to a family affected by autism. Offer to help. Drive their
    neurotypical kids to practice. Do their laundry. Baby sit.
  4. Educate yourself about autism (and don’t use television or movies to do it).
  5. Resist references to Rain Man or that kid from Parenthood. As the
    saying goes, “If you’ve met one kid on the autism spectrum, you’ve met
    one kid on the autism spectrum.” They are all very different.
  6. Don’t bat an eye when you see a kid who’s clearly too old for diapers. Believe me, his mom already knows this.
  7. Resist the urge to tell a kid she’s too old to chew on a baby toy / ride
    in a stroller / hold mom’s hand / get carried. This may be the only way the
    kid can get from point A to point B without being overwhelmed.
  8. Understand that most ASD kids don’t “look” autistic (whatever that means).
  9. Realize that to some kids a trip to Walmart / an amusement park / the
    mall / a grocery store / pretty much anywhere can be like running the
    sensory gauntlet without a sword.
  10. Know that you can’t really understand, but you can (and should) remember how lucky you are.

Differentiating autism from SPD or attachment issues in adopted children

When I talk to other adoptive moms, especially those who have adopted kids from hard circumstances, I often hear concerns about autism. It’s a familiar concern to me because one of my kids raised a lot of red flags in regards to autism symptoms. When my oldest was about two, I was beginning to have real concerns about his development.  He had a hard time making eye contact at close range.  He was always crashing into things, touching things, invading the space of others, etc.  He couldn’t point to objects yet and his speech was delayed.  Having little knowledge about attachment issues and even less information about SPD, my first concern was autism.  I had him evaluated and we got him into Early Intervention.  This was very helpful for his development.  He had occupational therapy where they addressed his fine motor and sensory issues, and speech therapy too.  I saw major improvement.  But still,  I spent so much time fretting that he had autism.  I was scared for his future and what all of this meant. I was in full grief and panic mode, and that anxiety made it hard for me to see his social strengths that conflicted with an autism diagnosis.

Now that he’s older, I know that my early fears of autism were wrong, although he does have sensory motor issues that accounted for the late pointing and speech.  (Speech is a fine-motor issue . . . who knew?)   But I spent years worrying about it because no one had ever explained to me the connection between adoption and sensory integration, or that sensory issues can lead to late milestones and delays that are not related to cognitive functioning.  Many adopted children have one or more risk factors for sensory dysfunction.  Prenatal drug exposure, early neglect or lack of stimulation, trauma, lack of attachment . . . all of these things effect the way the brain develops, and can lead to sensory processing issues.  These sensory processing issues often mimic other disorders, and can have parents (and even professionals) coming to the wrong conclusions.

In addition to the higher risk for SPD, many adopted children have attachment-related behaviors that can also mimic autism, like poor eye contact. A friend recently linked to this video on understanding symptoms of autism, and I really wish I had seen this 6 years ago when I was fretting about my own child. It illustrates some of the more specific signs of autism, which are much more complex than sensory-seeking or a reluctance to make eye contact.

Adopted children seem to confound the rules when it comes to neurological diagnoses, and what it appears to be may not be the whole story.   If you have an adopted child who is not meeting milestones, be sure to educate yourself on sensory processing disorder and attachment behaviors, and don’t assume that every professional  you see will be familiar with these issues. I’ve seen far too many adoptive parents have doctors suggest an autism eval when the symptoms were simply a combination of sensory and attachment issues, both of which are common in children who have experienced early neglect.