Talking to Your Child About Their Autism

We were all in the car—my third grader, who has autism, his kindergarten-age brother, and little brother’s friend. My son with autism made one of his frequent comments about a bus that had just driven by, probably something about the number, or noticing some incredibly minute detail that the rest of us all would have overlooked. Little brother sighed, and with a note of exasperation said, “H———, why are you, like, so obsessed with buses all the time??”

 

“Why are you, like, so obsessed with Pokémon??” I countered brattily.

“I know why!” My younger son’s friend piped up helpfully. “It’s because H——— has a disease or something, I can’t remember what it’s called, but isn’t that right? He has some kind of disease and that’s why he likes buses and trains so much?”

I knew that my son’s friend had probably mentioned some quirky thing that H——— did to his family and learned from them about autism. I have no doubt that it was a loving, compassionate conversation meant to help him be a better friend. I hadn’t done my job with my son though! And I didn’t want my son worrying that he was sick!

“H——— does not have a disease,” I scoffed, trying to conceal my mild panic, then, “look at that!” I said, drawing their attention to who knows what, in a desperate ploy to change the subject.

When to Have the Conversation?

When it comes to my son’s therapies, IEPs, medical issues, learning, etc., I have to say, I am pretty on top of it. I research deeply, I execute vigorously, I push for what’s best for him.

But I waited too long to even think about how and when to talk to my son about his own autism diagnosis. Why? The truth is, I was avoiding it, putting it off. This is because I was very scared of doing it wrong, or at the wrong time, and damaging his psyche for life. It always seemed best to just wait. But in waiting, I risked someone else delivering the information to him first, like, say, a kid, who wouldn’t have all the facts straight and definitely wouldn't put the same degree of care into the conversation that I would. The incident in the car was a wakeup call. Okay, it said, time to stop avoiding and address!

I did a little research on when and how to have the conversation and everything I read told me that I was late. And for precisely the reason I had identified. You don’t want your child becoming aware of the situation before you talk to them about it. In that lonely space, they might get false information or come to false, injurious conclusions out of their own natural immaturity.

I’m going to share with you all how I approached the conversation with my son because I think it went really well, but it is just my one experience, and I know that there are probably many great ways to navigate the conversation. Each parent will have to consider their own circumstances and find their own approach. I must also acknowledge, that my son is one kid, and his particular mosaic of autism symptoms are unique to him. People with autism have such widely varying symptoms, gifts, levels of functioning, levels of communication etc. What works with one kid might be totally irrelevant to others.

My son, due in large part to the intensive and incredibly skillful ABA therapy he received at the magnificent Astra Day School in Kansas City (for more information about Astra or ABA, see my post on knowing what good ABA looks like), is verbal, warmly social, and is doing quite well in a typical third grade classroom with minimal supports. Please know that there isn’t a day that goes by that I don’t feel gratitude and a bit of survivor’s guilt for the privileges, and dumb luck that conspired to bring these incredible outcomes about for my son. I am keenly aware and deeply pained by the knowledge that many families, hindered by economic disadvantage, social inequity, lack of support, and/or racial injustice, never experience these amazing outcomes. Others have such severe autism symptoms that even with ideal interventions, functionality is still nowhere near what one hopes for. My heart goes out to parents who might read my words and find them ill-fitting because of the severity of their child’s symptoms. I pray for peace and comfort for you in the midst of your daily struggles, and bless you for the devoted and unimaginable labor ad sacrificial love you put into your child’s life.

How? (a Sample Conversation)

I took my son out, just the two of us. I got him some of the football trading cards he’s currently into and a hot chocolate, and we sat down to look at his cards. My son can be pretty resistant to intense, face-to-face conversations, like many "neuro-typical" sons, (and husbands, come to think of it!), so I wanted us to be doing something really pleasant while we conversed. My son, like many people with autism, has a crazy memory for details! Very soon, he was telling me about the teams, positions, trade histories, etc. of some of the players on the cards. This was where I moved in. 

“H———,” I said, “You have such an incredible memory. I couldn’t remember half of the things you’ve memorized about these players.”

He smiled contentedly.

“Have you ever noticed,” I continued, “that you have a way better memory than just about anyone else you know?”

Shrug.

“I mean, you know all these players and their numbers and teams and positions. You know every bus’s number and the end points of their routes. You know all of the stops on all of the L trains in the whole city! That’s incredible! Most people can’t do that. You are really different and special in that way.”

I let a few minutes pass, and we looked at and talked about his football cards.

“H———, you know how I’m allergic to milk, but you’re not?”

“Yeah. You have to drink Almond milk, but I like cow’s milk.”

“Exactly. I have an allergy that causes me to get a tummy ache when I drink cow’s milk, and it makes me a little different from you and from other people who can drink milk without it bothering them. And you know your friend, N————, who wears glasses?”

“Yes.”

“Well, N————, has something different about his eyes that makes it difficult to see without glasses. You also have something that makes you different in some ways. It’s called autism, and autism is what gives you your super special memory. It also helps you to be really good with numbers and math, and even with reading. There are some ways that autism makes you different in ways that are a bit less fun. Do you remember how much you hated the referee’s whistle when you played basketball? Remember how badly it hurt your ears?”

Nod.

“Autism makes your ears a little different. It causes noises to sound louder and more painful to them. Another thing, is that autism makes your feelings a bit more sensitive. You remember the time your class watched The Adams Family?”

“I hate The Adams Family! It is a stupid movie and we should never watch it!” 

“Yeah, you really hated it and you felt scared and creeped out by it. It made you really upset, and much more upset than the rest of your friends. That is because autism also makes your feelings louder. Scary things feel scarier to you. Sad things feel extra sad for you. But happy, silly things also feel extra happy and silly, and that is why you much prefer happy, silly movies and books.”

We went on a bit longer with a kind of inventory of the ways autism causes differences in H———.

I felt that, during this part of the conversation, I did a good job of presenting the facts, both positive and negative, without too much emotion, and making it clear that autism meant super cool gifts that he was lucky to have and a few things that were harder. I wanted to be honest and not deny the difficulty of some of his symptoms, but without making it even slightly tragic. I also wanted to normalize his differences. We are all different in both fun and hard ways! He’s right there with the rest of us on that one.

Why?

We took another break from the conversation and talked again about some light and fun topics.

Later, in the car, he asked me. “Do you have autism?”

“No,” I said with a palpable ache in my heart.

“Why do I have autism, but you don’t?”

Ooh, tough question, I thought. The answer I gave was informed by my belief in a creator God, who made us and loves us and works everything ultimately to our greatest benefit, so I want to acknowledge that it might not be useful to others who do not share that belief.

“That’s a great question,” I said, “and I don’t completely know. I don’t know why I have an allergy to milk and you don’t. But one thing I do know is that God loves difference. God made the rainbow with all those different colors because he loves to have so many different, beautiful colors! He made people with all different colors of skin because he loves black skin, and brown skin, and pink skin, and white skin, and freckles. He made so many colors of hair, and he gave people all different kinds of talents, and he made some people with milk allergies, and some with eyes that work better with glasses, and some with autism because he loves difference. It’s like a big, beautiful bouquet of flowers to him. He made you in a way that delights him, and it delights me too. I love everything about you.”

Discussing with Peers

“I’m going to tell my friends that I have autism, and I am powerful!!”

I’ll be honest, this sparked fear in me. For obvious reasons, I was nervous about him opening up his autism too much as a topic of discussion with his third-grade peers. I’m not sure that I responded to this in the best way, but I’ll share my response anyway.

“Sweetie, for now, I think it would be best to discuss autism mostly just with your family and with adults you can trust to tell you true things, like your teacher, or Ms. E, your ABA teacher. The reason for that is that kids don’t really know much about autism, and you don’t want them telling you things that are wrong. Someday when you’ve learned all you need to know about it, you’ll definitely be able to talk to anyone you like about autism, but for now, I think it’s best to mainly talk about it with people who know a lot about it. I am always happy to talk with you and answer any questions you might ever have and so is Daddy.”

Advocating/Sticking up for Himself

“One way that you can talk to your friends, though, is if they ever give you a hard time about a way that you are different. For example, if there is a fire drill and the bell is hurting your ears and you have to cover them, or you’re getting upset, and your friends say something like, “H———, what’s the big deal?? Why are you getting so upset about a dumb fire drill??” You could say to them, “my ears are a little different from yours, and noises are much louder for me, and so the fire drill hurts my ears more than it hurts yours. That’s why I’m upset. You’d probably be upset too if you heard the bell as loudly as I do.” 

Keep the Conversation Going!

Keeping the conversation going is crucial so that my child can always feel free to bring me any new thoughts or questions about it. I think kids are experts at detecting the topics that are charged and, at a pretty early age, they start taking the temperature on those topics to see how comfortable we adults are in talking about them. These topics can include sex, their bodies, privacy with their bodies and appropriate touch, relationship dynamics and tensions, religion, gender, their own self-image, and so much more. Keeping a conversation open and ongoing is way easier than closing a conversation with the plan of intentionally reopening it at some future time. 

Personally, I think keeping the conversation going is done best when it’s done kind of subtly, with a parent always looking for opportunities to casually drop in a comment, or acknowledge those topics when they’re present, or even nearby. I take every opportunity, perhaps to a comic degree, of referring to the mechanisms of sexual reproduction because I want my kids to sense that I’m comfortable talking about it and comfortable with them talking about it. If we see a bee on a flower, you better believe that the human process of fertilization is going to get a mention! I want it to be a perfectly normal part of life. 

Going forward with the autism conversation, I am already on the lookout for opportunities to refer to H———‘s differences, or the differences of myself and others in positive, normalizing ways. Things like, “there’s that amazing memory in action again!” or “Grandpa has those things in his ears because his ears are different in that they don’t hear very well anymore. I bet he wishes he could have your ears that hear extra well!” Or ( a real one that just came up) “Learning about this topic in school upsets you, huh? Lots of sad and horrible things have happened to black people in America, and with your extra loud feelings I could see how that could make you extra sad. I wish history were full of only happy things, but unfortunately it isn’t, and it’s really important that we learn about the bad things and the good, so that we can do better. There are still lots of bad things happening and we have to do our best to change them even though it feels upsetting just to think about them. If we let our upset feelings stop us from thinking about bad things that are happening, we won’t be able to do our part to stop them, and then there will be even more bad things. This will take you some time, but I know that you can get great at learning about sad things, just like you got great at ignoring the referee’s whistle in basketball. You can always say to me or your teacher, “This is really sad and learning about it is making me feel sad and upset,” and we will be with you and help you with those feelings while you learn.” It was mostly H——‘s amazing 3^rd-grade teacher who so skillfully navigated this conversation!

How About You?

Have you had this conversation with your child? How did it go? What tips or strategies did you use that worked for you? What mistakes did you make that others might avoid? Parenting is tough work and arguably the most important work in the world. Praise yourself for every act of courage and each brave conversation you have, even if you make mistakes! You can always go back and address those missteps with your child! They are so forgiving!

Navigating Autism Services Part 1: The Weird World of Applied Behavioral Analysis

   

As soon as you get a diagnosis of Autism you will begin hearing the term ABA, short for Applied Behavioral Analysis. ABA is the treatment/therapy for autism that has the highest rate of documented efficacy. That just means it’s the only thing that’s been proven to help. And the earlier

the ABA therapy begins and the more hours of therapy the child receives the better it works. Earlier and more = better lifelong outcomes. Because of this fact which the medical and autism community knows, ABA, an utterly foreign and seemingly bizarre therapy gets pushed really aggressively on parents at a time when they are disoriented, likely ignorant (as I was) and likely ferociously protective (as I was) of their newly diagnosed child. Parents at this stage have probably read online about diet solutions, probiotics, all kinds of medical and “curative” stuff and they likely want to pursue these strategies (nothin’ wrong with it), but the doctors and therapists sort of slap their hands and say, “NO! This obscure thing called ABA! Lots of it, immediately!” And all the while the clock is audibly ticking to help your child for the rest of their lives. It’s an anxiety inducing situation.

So I’m writing this little piece about ABA as a parent to a parent (because doctor’s, in my experience, mostly suck at communicating with parents and are mostly clueless about autism) having been through it and seen the good and the bad and having come out the other side with really amazing outcomes that I would want for every parent who receives an autism diagnosis. There are some important things to know, though, that can help you navigate ABA quickly and successfully.

First, what is ABA? I could go on for a long time, but suffice it to say that ABA is a method of changing behavior by rewarding the behaviors we want to see more of, with the ultimate goal of rerouting the circuitry of the brain so that those more adaptive behaviors become natural to the child. What I didn’t realize at the time, is that this is how all of us learn already. Babies jerk their little limbs around and put things in their mouths specifically for the opportunity to have a rewarding sensory experience, which they will then repeat. When a baby jerks its crazy little arms and hits a bobbly-doo on a mobile, there is a dazzling flash of color, perhaps a little tinkle of bells, or the crunch crunch of that weird crunchy material they make baby stuff out of, and these fantastic rewards get the baby to reach out and explore their world, so more learning can happen. When a baby’s face spasms into an approximation of a smile, all the adults in the room go nuts and start smiling and cooing, and baby learns to do more of that.

Now I know a flood of counter arguments are probably rushing to your mind about negative responses and how those shape behavior too. That’s getting into some higher level theory of ABA and there’s literature to go into that stuff, but I can promise you that, when practiced by skilled therapists, this method is insanely successful. It just is.

My first encounters with ABA, though, were not good, and they made me very skeptical of the whole practice. My son, who, at the time of diagnosis, was echolalic (he just repeated language and didn’t generate original language himself) was enrolling at a language acquisition preschool at University of Kansas, where I was a graduate student. Just across the courtyard from the Language Acquisition Preschool was an ABA preschool, and I toured it. It was an awful, depressing, hellish tour. I was only there for about thirty minutes, and maybe they do great life-changing work. I don’t mean to poop on them, but from my perspective, it was dehumanizing and frightening. Dead-eyed children were being led around like dogs by their therapists who were alarmingly young, cold, and barked orders at them over and over until they complied. I almost ran out of the building, and you can be damn sure that I sooner would have handed my child over to a cult leader than to that preschool.

Later still, I signed on with a dubious ABA provider recommended by my insurance, who came to our home to provide services. Similar issues occurred: a rotation of wildly unqualified therapists basically just tormented my kid (and me because I had to witness it all). One, fresh-out-of-undergrad, first-day-as-an-ABA-therapist girl, stood over my son, who was crying and plugging his ears on the couch and said, over and over, in a monotone at fifteen second intervals, “touch your nose...touch your nose...touch your nose.” I mean creepy, weird, 100% unhelpful shit. Even the BCBA (Board Certified Behavior Analyst) who is basically the boss of the therapists on the team and is supposed to be an expert, was terrible.

Perhaps you, sharp reader that you are, already noticed the discrepancies between my description of ABA and my experiences with the preschool and the dubious provider. You noticed perhaps, that this therapy doesn’t seem very “rewarding.” DING, DING, DING!

   

By a series of miraculous events, we found and got into The Kansas City Autism Training Center which runs Astra Day School. Oh Astra Day School, if I could but spend the rest of my life singing your wondrous praises. Beautiful school, beautiful teachers and administration, blessed, blessed, blessed are you among schools.

This school showed me what good ABA is and changed my kids life forever. So here’s what good ABA is:

1. GOOD ABA IS FUN!

One helpful thing to keep in mind is that good ABA therapy looks good and bad ABA

therapy looks bad. Yay! Something simple in the anything-but-simple world of Autism! Providers will try to convince you that something that looks bad is actually good (you just don’t get it). Nope! They don’t get it. If you are considering an ABA service you absolutely must observe it in action and you must look for FUN! Fun is rewarding to children. Fun changes behaviors. Kids with autism have many aversions and aversions keep children (all children) from learning and changing in positive ways. If there isn’t some silly, off-the-wall fun happening, if there aren’t children and teachers with big grins on their faces and laughter coming out of their mouths on a pretty regular basis, move on!

2.     GOOD ABA USES REWARDS OTHER THAN FOOD

Many ABA providers use food as rewards. I am not against the occasional use of cereal puffs, but I think we can all see the problematic nature of exclusively relying on food to reward children. First of all, your child will (duh!) get full and cease making progress. Then they will have an unhealthy relationship with food and get fat. If a provider is relying exclusively on food rewards it means they are uncreative, small-box thinkers and can’t imagine anything more rewarding than food. If kids are having fun, they are already being rewarded. Astra Day School rewarded kids with things that were therapeutically beneficial as well, like jumping on a trampoline (my super goofy son particularly loved when his teachers would peg him with red rubber balls while he was jumping on a trampoline), getting to play a board game, getting tossed up in the air, being tickled (if the child likes that), having a paper airplane throwing competition, running three-legged races, wearing a crown, the list goes on and on and on! This is the stuff you need to be looking for: creativity, fun, organic social interaction.

3. GOOD ABA PROVIDERS (drumroll)... LIKE KIDS! AND ARE GOOD WITH THEM!

I’ll be real candid, ABA is a highly structured, systematic operation and it’s practice, especially becoming an expert BCBA (which involves massive amounts of theory, knowledge, and real world problem-solving) appeals to Type A people. And thank God because only Type A people would be good at it. BUT  that type A-ness must be balanced by massive amounts of compassion, humility, and just genuine affection for children. If your BCBA’s jaw visibly clenches when your child is not playing into their treatment plan as they had hoped, if their eyes narrow in determination when they look at your child, if they seem to see your child as a challenge to be conquered rather than a precious little person with potential to unlock, if they don’t seem to obviously, openly, unabashedly care for your kid or kids in general, move on!

We experienced some bad ones and the results were zero to potentially negative. Then we hit the jackpot with Megan Carmen at Astra Day School and she became almost a part of our family. She was our son’s second biggest advocate and champion (Who has two thumbs and is number one? This chica👍👍 ). She was creative, attentive, determined and worked tirelessly on his behalf, and she was always open to parent input, viewing us as her biggest resource for knowing what our son really needed. And all of our son’s seven-plus therapists at the school (Emily, Ana, the Laura’s,Cassie, and so many others!) were so fun and loving and dedicated to him, and he ADORED them. And it wasn’t just our team. Every BCBA and therapist at that school was beloved by their kiddos and was deeply invested in those kid’s futures. It was just the culture of the place. So when our son graduated from Astra Day School and headed off to enter a mainstream first grade classroom with minimal supports, team Holland was passing around the box of tissues.

3. GOOD ABA PROVIDERS COMMUNICATE WITH YOU.

You are an asset. You are the one who lives with your child day in and day out. You see their eating, sleeping, pooping, socializing, grooming habits. All of it! And you are the one who is able to articulate it as your child cannot. You are the most important source of information. You are how a therapist knows what to program for. You are how they know if their results are making it home and to other contexts. Your BCBA should openly rely on you and seek your input. Your BCBA should also be constantly letting you know what is being worked on and what you can be doing at home to assist in progress. They should have a binder of graphs that chart, in clear, no-interpretation-needed, up-to-the-minute data how your child is improving (or not), and they should be able to show you this data upon request. You should feel like a team. If you ever feel in the dark about what is being worked on with your child or how they are progressing, say something, and if after you say something you still feel uninformed, let them know that communication is a problem and you need that problem addressed. If it doesn’t get remedied, consider moving on, unless, of course, you are so dazzled with the results that you’re willing to sacrifice being in the know.

4. GOOD ABA PROVIDERS ARE TRANSPARENT

It is common for center-based ABA providers to have double-sided windows so that parents can observe their children without being observed and potentially distracting them. Astra Day School welcomed and even encouraged parents to come into the school, classrooms, wherever! To observe sessions and to learn how to work with their own children in effective ways. You should be able to observe in-home therapy and you should be welcome at your child’s school.

Let’s be real, children with special needs are among the most vulnerable human beings in society. Children with intellectual impairments are as much as 4.5 times as likely to be victims of sexual violence or abuse. As a parent of a special needs kid you need to face that. Face it. Take a deep breath and face it. Did you face it? Okay, we can continue.

Our culture doesn’t like to talk about. You will be seen as neurotic and suspicious for even asking questions that suggest you are concerned about the safety of your child. TOO BAD, SO SAD. Reality is on your side. You have to protect your statistically vulnerable child and NOBODY ELSE is going to do it for you. Don’t allow your statistically vulnerable child to be in situations where there are no measures to protect them against abuse. I, personally, would never choose a center-based provider who did not allow me to stop by and see to the safety and well-being of my child at ANY time, and I would not allow an in home therapist to request or have privacy with my statistically vulnerable child. In the next room with the door open, sure, fine. And that can change as your relationship with the provider changes. By the second year at Astra Day School, I would have trusted my son’s providers to take him in a rocket to the moon. But never, ever go against your gut. If something feels secretive, or if parents seem unwelcome, then there is probably something they don’t want you to see. It’s probably not horrific abuse, it’s probably just bad therapy. Either way, transparency is healthy and essential.

I realize that Astra Day School is a really special gem. Not every experience is going to be that magically perfect, but the closer to magically perfect you can find, the better.You have to weigh things for yourself. As a rule of thumb, I would say no therapy is better than bad therapy (both are terrible), middling therapy is better than no therapy, but don’t be content with middling therapy. Start there if that’s what you can find, but keep seeking out the best. The stakes are so high and you will never get those precious years of neuroplasticity back. It’s frightening to acknowledge, but the quality and amount of therapy you do in your child’s younger years will determine the quality of the rest of their lives... and yours. It’s the most important investment you will ever make.

I also realize that in most cases the quality of therapy correlates to cost and the cost of high quality ABA can financially ruin a family. This is a horrible reality. I got the absolute highest quality therapy for my son and lots of it and my husband and I NEVER (there’s an important exception with FIT LEARNING, which I’ll talk about another time) PAID A CENT. Yeah, you read that correctly. We paid zero dollars and zero cents. My husband works for Trader Joe’s, (blessed, blessed company!) and Trader Joe’s insanely affordable insurance covers autism services at 100%. Yes that’s right, 100%. Copay? Nope, 100%

I hesitate to share the secret because I’m kind of afraid Trader Joe’s will change their policy, but F it. If you can’t afford autism services for your child, go get a job at Trader Joe’s. If you are over-qualified, get a management job at Trader Joe’s. They make good money and it’s pretty fun. I’m sure other companies have similar insurance policies for their employees. If you know of one, please feel free to mention it in a comment. And if you have any other questions about ABA, please ask in the comments and I’ll do my best to answer. There is SO much more to discuss, but this is already long.

Good luck parent warriors!

The A(utism) Word

        A while back I wrote a post about my concern that our son was developing a stutter (click here to read that essay). Now, a little over a year later, we have a diagnosis of Autism Spectrum Disorder. 

Um, hi God. I'm sorry I complained. We'll just go ahead and take the stutter if that's alright with you.         

When you receive an ASD diagnosis the first choice you have to make is how to feel about it. This isn't the chicken pox or the flu, an illness one endures in the body and then gets past with their essential self intact. The decision is actually an incredibly complex one that depends on what you know about autism, what you believe about it and what attitude towards it you think will best serve your child. This decision is quickly brought to a fine point, the first time a situation arises where you have to choose whether or not to use the word, autism, in your child's presence.  

To use the A word or not to use the A word. This is a tough decision to make as a parent of an autistic child, and I want to say right up front that I don't think there is one right choice. Every parent has to search their own soul and do what they believe is best for their child and their family. But your attitude towards the word can be in some ways representative of your attitude towards the disorder and towards the future.    

        For a while I thought that my willingness, and even comfort, using the word "autistic" was a gage of my level of acceptance, acceptance of the diagnosis, and more importantly acceptance of my son as something other than what we all hope our children will be, healthy, whole, unlimited in potential. I thought that perhaps if we just said it like it was no big deal, like being left-handed, that it would seem like no big deal to him and to us, and it would lose its power to inflict pain.   

In an effort to "accept" and prepare for an "inevitable" future with autism, I started reading books about autism in later life. These books were meticulous in their avoidance of hopeful language. They never spoke of healing, they never spoke of improvement, they never spoke of potential or independence, they never acknowledged the possibility that autism could be anything but incurable. In horribly no-nonsense language the chapters went on about assisted living and the best types of savings accounts for preparing to financially support your child for the rest of their lives. The autistic child was, and always would be, a hopeless burden. Accept it. Those books were advising me to box in my son’s life in the name of practicality, realism. According to those books acceptance seems to equal letting go of hope for him, for his future and the fullness of his life. To hell with that.  

       

There are a lot of people in the autism community who want to tell you not to get your hopes up. Some have the attitude that you should just be zen about it and "accept" what is. Don't waste time searching for a cure, just put a positive spin on things as they are. There's the movement for "neurological diversity," that suggests that autism doesn't need a cure, that autism isn't worse than "normal," it's just different. There are the bumper stickers some tote on their cars that say "Autism is Ausome!" Perhaps if you think of all autistic individuals as being savants like Rain man (as movies and television like to portray them) autism might seem "Ausome," but the reality is that only 10% of autistic individuals demonstrate any savant talents, and that talent is usually something as useless as being able to recite the December, 1989 TV guide from memory. On the other hand, twenty-five percent of autistic individuals are non-verbal. Only 17 percent of autistic individuals, ages 21-25, ever even attempt to live independently. Autistic children are victims of abuse and even homicide at a rate that far exceeds that of typically developing children. Many, if not most, individuals on the spectrum struggle to have human relationships. They don't like to be touched, they don't like to be hugged, they don't bond with their family members. I don't know about you, but that doesn't sound awesome to me, no matter how you spell it.  

Others, often in reaction to the "I'm ok, you're ok" bumper sticker rockin', delusional pep squad, go too far the other way. They urge parents to face the grim facts. To accept that it's a hard, painful, devastating condition that brings suffering on entire families. They get angry when fad therapies emerge, or some new study makes news and "gets everyone's hopes up." One side says, everything's A-okay! Who needs a cure? The other says, everything is awful, and talk of a cure is cruel.  

I get both impulses, really I do. Autism is terrifying and heartbreaking, and the only thing scarier than the disease itself, is the hope that you can rescue your child from it. Hope is scary and painful. Hope does not deny what is, put a positive spin on it, say it's not that bad, but it also refuses to accept it as unalterable. Hope focuses, not on what is, but on what can be. It puts all its eggs in a basket that very well might get smashed to shit, and it knows it, and it does it anyway because hope is only for the strong and the brave. What I want to tell those people who abhor hope in one fashion or another, is, if you want to be zen about your  own challenges and struggles, or if you want to lay down and die in the face of adversity, go for it. But no one has the right to do that for someone else and especially not for their child. If you're a parent, you don't have the right to give up hope because a child will never have more hope and determination than their parent. So you go cry in your closet when you need to and then you wash your face and you get back out there and you hope, dammit.    

Autism is a really twisted, gnarly maze, but there is a way out, and it's my job to get in there with my kid, take his hand, search unceasingly for that way out, and hum a song while we do it, so that he's not afraid. I don't have time for anyone who tells me to just leave him in the maze, or to throw him a pillow so he can get comfortable because there's no way out. I'm not leaving him and I'm not throwing him any pillows. We're getting the hell out of there.

  

My aunt was born with her umbilical cord strangling her. She was brain damaged, and the doctor's told my grandmother it would be best to institutionalize her. My Grandmother said, very politely and in not so many words, screw that. She took her baby home and she raised her just as she raised the rest of her ten (!) children. She never lowered the bar for her, and she never allowed anyone to stick any limiting labels on her. She got her some therapies, but put her in regular school, regular sports and expected her to abide by the regular rules. My aunt today has a full time job, owns a home that she paid for, is a fully functioning autonomous woman, and to this day doesn't think of herself as disabled. My aunt grew up just assuming that she could do what everyone around her could do and that she would go on to do the same things as them in the future. Assumptions are powerful stuff.  

It doesn't seem like a little old word should matter that much. A rose by any other name, and all that, but words do matter. Words and labels have incredible power, and all I see this particular word as offering my child, at least at this point in his life, is excuses, crutches, reasons to fail, lowered expectations, brochures for a lifetime of assisted living. I want him to assume that he can do the same things other kids can. I want him to grow up assuming he will have a family, he will have a career, he will go places and do things and affect people and make a difference. And while he's doing that, I'm going to assume that there are answers out there and that I'm going to find them and he will be a success story. We have nothing to lose but hope, and hope isn't hope unless it's being gambled.