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.

#TBT: parents, please educate your kids about adoption so mine don’t have to

On Thursdays I post from the vault. May is National Foster Care Month which seems like a great time to revisit this post from 2012.
 
I took the kids to the park the other day, and I was seated just close enough to the play structure that I could faintly overhear a conversation that occurred between Kembe and several older kids.  At first, I had a hard time understanding what was being said, but something about Kembe’s posture caught my attention.  Typically, he’s a relatively cocky over-confident kid with a lot of swagger., even around older kids.  But in this setting he looked . . . almost cornered.  He seemed intimidated and a bit helpless.  As I strained to hear, I though I heard one of the kids saying, “That is NOT your real mom.”  I had an immediate pit in my stomach, and tried to check myself.  Surely they are not ganging up on him about adoption, I thought.  I stood up and started walking casually towards them, so that I could hear the conversation and intervene if needed.  Sure enough, this is what I heard the four other children saying to Kembe:
“That is not your real mom”
“Yeah, where is your REAL mom?”
“So you are adopted”?”
“You HAVE to be adopted”
“No way that is your mom”
“What happened to your real parents?”
I don’t think these kids were trying to be cruel.  But the way that they were surrounding him, asking questions and refusing to accept his answer as he repeatedly pointed to me as his mom, made the situation feel confrontational. Kembe looked embarrassed and I decided to intervene.  I approached them and tried, in my most friendly and casual voice, to introduce myself and then asked if they had some questions I could help with.
“We were just wondering what happened to his real parents, “ one of the kids asked.  I told them that this was a personal question – that it was up to him if he wanted to share but that it might not be polite to ask.  They seemed to get that.  We talked a bit more, and the kids were all very nice, suddenly seeming to take quite a friendly interest in our family.  The only girl in the group, who I’d guess was about eleven, starting gushing about how great it was that I adopted him.
“It’s SO NICE you took him in. Because orphanages are a really bad place.  They just make you clean all day long, and then people come in but they might just be pretending to be your real parents for money.”
It was clear her only education on orphan life and adoption was the movie Annie.  Then, the clincher.  Another kid – a boy of about 10 – seemed relieved that I came over to explain this whole mix-up of our family.  His actual words:
“I mean, I could tell that something was wrong.  Something was not right about that
I corrected him then, my patience running a bit more thin.  “There is nothing wrong.  It’s different, huh? Most families match and we don’t.  But it’s different.  It’s not wrong.”
This isn’t the first time my kids have been questioned on the “realness” of their family by their peers.  I suspect it won’t be the last.  I know I can’t expect every single kid to have been educated on adoption, and inevitably my kids will be the ones educating their peers.  But is it too much to ask that other parents, whose families don’t have exposure to transracial families, take a couple minutes and explain it to them so that my kids aren’t always the center of the After-School Special on Adoption in the school playyard?  Because it’s already getting old, and we’ve got a long ways to go.
In fact, I will make it really, really simple right now. Here’s a script.  You can ad-lib.  Freestyle it.  Or just say this:

1. Sometimes kids have different skin colors from their parents. It could be because they are adopted, or because their parents are different races, or because they have a step mom or step dad.  It’s no big deal.  They are still real families.  There is nothing wrong or weird about families with different skin colors. (Insert examples from your own life here. Or have a come-to-Jesus meeting about diversifying your friendship circle).

2. When someone is adopted, their mom is just a mom.  The person who gave birth to them is called a “birth mom”.  Both of them are real moms.

3. It can be nosy or embarrassing to ask a kid if they are adopted or ask what happened to their birth mom, especially if you don’t know them.  That could make them feel bad, so don’t do it.  If you are curious, ask me about it and if I know the answer we can talk about it.

See? NOT HARD.
And while you are at it, you can throw in a bit about how some kids have parents that don’t live together, or have two mommies or daddies, etc. Because no child from unique family circumstances deserves to be singled out on the playground because we’ve failed to explain the world to our kids.
Another really easy way to explain adoption to kid: books.  Here are a few good ones:
           
Or, you could watch the Disney Channel show Jessie, which features a transracial family.  Could be a good conversation starter, as well as a way to normalize racially mixed families.
There are also several movies that explore adoption that could further the discussion:

   

On the flip side, if they’ve seen Tangled or Annie or any other number of Disney movies, you may have some deconstruction to do about what adoption is really like and what language is appropriate.
I know we’re all doing the best we can, and that there are a million things we are trying to impart to our kids.  But taking a minute to talk normalize adoptive families with your kids would be doing my kids a major solid. 
In the meantime, we’ll be continuing our role-plays at home, in which I play the nosey kid on the school ground and I help my kids come up with comebacks that they are comfortable with. Jafta’s favorites:
You don’t have a very mature understanding of adoption.
and
Does she look like a fake mom to you? 
Heh.

#TBT: the 15 steps of packing for a family vacation

On Thursdays I post from the vault. This is from Nov 2012 

We are gearing up for our big Peru trip this weekend, and I’m a
teensy bit stressed. The fact that I like to procrastinate doesn’t help
matters, and I typically end up in a self-fueling loop of non-helpful
avoidance behaviors any time I need to seriously pack for a big trip. It
goes a little something like this:
1. Make a list
2. Get suitcases out of garage
3. Go on facebook
4. Decide to pack, look for list, realize list is lost
5. Make a new list
6. Decide I should go online to check the weather. Go on facebook.
7. Start laying out clothes. Decide I hate my wardrobe.
8. Stress eat.
9. Yell at children.
10. Tell husband to pack the kids.
11. Overview what husband packed. Fight with husband over his choices and inability to match fabrics. Repack the kids.
12. Put kids to bed. Resume packing.
13. Decide I need to return some emails.
14. Go on facebook.
15. Realize it is 1am and we leave for the airport at 6am
16. Throw everything in a suitcase
It
would be nice if I could skip the avoidance dance and just take a few
hours to pack, but in talking to others, it sounds as though my packing
avoidance dance is a universal experience.
How about you? Look familiar?

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.

Can moms ever really get their groove back?

I received this email from a reader and thought that it was a great question, so with her permission I’ve posted it here along with my response. I’d love to hear your experience with this because I think it’s something many mothers can relate to.

Hi Kristen,
I’m a mom with a 2-year-old daughter. But I used to be a writer, a friend, and a wife and interesting person. I used to be the person my friends came to for advice on things like what movie to see, or what kinds of clothes were fashionable, or how to put ink in fountain pens and to see what erotic novel I was secretly planning to read that month. Now? I just work and come home. I don’t talk to my friends anymore except the ones that have kids, because all I can talk about is my kid anymore. People ask how I’m doing and I launch into some boring monologue. I hate it. I despise it, really. I bore myself! But I’m a mom and that’s not only what I feel like I’m supposed to be doing, it’s all I have time for: work and kid, and the husband if there’s anything left over. I miss pretty things: silk lingerie (back when I had a better body and my husband didn’t laugh at me for trying to be sexy). breakable dishes. wine. Movies without drawn characters.  I read a lingerie blog post and for a moment I was excited about it until I realized, ‘nope, that’s not my life anymore. That’s not for me anymore. Maybe it never was.’ 


I guess my question is does it get better? Will there ever come a time when I can enjoy nice things again? Or am I doomed to t-shirts and athletic wear (which I swore I’d never fall into and LOOK! Here I am in wal-mart $4 Hanes shirts with oatmeal stains and sneakers and too-big capri pants!), and I haven’t been to the gym since maybe once a few months ago when my husband took pity on me?  There’s a part of me that is more than a little sad about what I’ve left behind — and yes, I feel appropriately guilty about that — but is there anything for *me* to look forward to besides the gratification and challenge of raising a good and intelligent person? Maybe it’s wrong to ask or even want, but am I done with pretty things forever? And does it make me a terrible mom/person for missing them? 


thanks,
Lisa



motherhood

Oh Lisa, Can I ever relate to this. I think many moms can. Parenting is an all-consuming job, especially when kids are little. When you have a baby, you hand over most of your free time. You hand over your ability to get lost in a project or go to coffee on a whim. Spontaneity takes a backseat. Your body becomes a mechanism for keeping someone else alive. It’s really easy to lose your sense of self in that. And it certainly doesn’t make you a horrible person for mourning your loss of freedom.

I can’t speak for every mom, but I will share my own experience on this. I was exactly where you are when my kids were small. I was there for a very, very long time. I felt like I was a shadow of my former self. I felt like my time and my energy was 100% expended on caring for others. I felt like I had no mojo. And sex felt like just another person needing me to fulfill their needs.

About a year ago, my kids turned a corner and things really changed for me. My kids are much less demanding. I’m no longer needing to help with toileting. I’m not carrying around small kids. I can go to the store without a melt-down. My kids can dress themselves and make their own lunch. They need me less.


And my body – it feels like it’s mine again. Sure, it’s available for cuddling and consoling, but those moments are less frequent and demanding than they used to be. As I’m reclaimed a little personal space, I’ve definitely found that there has been a revived interest in other physical activities. If ya know what I mean.

As they kids have needed me less, I’ve found more of my former self. I have moments in the day where I am alone. Bedtime is not an ordeal. I can ask the kids to help with housework. I can hear myself think. I have more space – mentally and physically. I can leave them with a babysitter without a long list of instructions. It’s just easier now than it used to be.

As these changes have taken place, I’ve tried to fill my life back up with the things that make me feel like an indivudual and not just a mom. I’m in a book club. I’ve started running again. I have Stitchfix sending me clothes that I wouldn’t otherwise buy. I’m making plans with friends and chatting on the phone about things both deep and frivolous. I say all this to illustrate that I do believe that much of this is a season. Which doesn’t really help you right now. But here are some things that worked for me. Mileage may vary.

Remember this is temporary. Don’t resign yourself to this current season being the new normal, or The Way Things Are. There is a light at the end of the tunnel as your child gets older.


Do something life-affirming every day. This will be unique to how you are wired, but figure out small things that ground you and remind you of the stuff you love. Make a playlist and listen to it in the car. Practice a hobby that you enjoy. Find like-minded friends and make a standing appointment. Subscribe to the theater. Create a book club. Rotate hosting dinner parties. Do something for you, even if it seems inconsequential.


Get outside. Try to carve out small moments to be in nature. If you have a treadmill habit, try walking outside. If you take a lunch break, dine outdoors when weather permits. The vitamin D will do you good, but I also think there is something inherently zen about getting outside that helps put us in tune with ourselves.


Seek beauty. You were mentioning your concern that you’ll never have time for pretty things again, but start small. Buy the new lingerie . . . even if you don’t feel great in it, enjoy the way it feels against your skin. It’s still for you! Buy a few wardrobe staples that you feel good in. Listen to music. Light a candle. Make your home living space a place you like to look at.


Move your body. It’s trite but it’s true . . . exercise really is the best anti-depressant. It will help you clear your head and give you the space to think and reflect. It’s a perfect time to meditate and plan. And there is the added benefit that you will likely feel better about the way you look, too.


Have sex for yourself.  As a woman, and especially a busy mom, it’s so easy to fall into the idea that sex is yet another thing we need to check off the to-do list, or yet another way that we have to take care of someone else. But chances are, you enjoy sex, too. So try to move out of the mindset of sex being an obligation. Indulge in sex for yourself. Try to switch up the dynamics so that you are the pursuer, at least part of the time. Figure out the things that keep your motor running, and don’t be afraid to ask your partner to help with that.

These are just a few of the ways I’m trying to reclaim my own identity in the midst of loving my kids well.

Readers, how about you? Any advice or experience on getting your mojo back?