Buts and Rebuts

*I’ve gotten several comments and such about this being “my son’s” or “my child’s” blog.  Note: Nowhere, in the whole post or in any of the subpages of my entire blog do I mention having a child.  That’s because I don’t have one.  I’m an autistic adult (yup, they have those!); these are my words.

 

When it comes to reason why parents are hesitant about–even outright againt–autism acceptance, there are a series of “buts…” that come up over and over again.  Despite what appears over the computer screen, and sometimes even in person, to be a remarkable facility with words, even despite the fact that I will soon hold a Master’s in English and creative writing, the reality for me and many other autistic people is that words are not my first language.  Trying to communicate my great-big ideas into the neat little packages of black print on a white background is like trying to force a beach ball through a key hole.  In the process, the beach ball gets punctured and ceases to be a beach ball at all, much like my ideas somehow deflate when they are packaged up all neat and tidy.  I know a lot of words, and I’m told I’m not bad at weaving them together, but this says nothing of the amount of energy and moments of frustration (those who know me in person are aware of how often I growl when I cannot communicate as I want) and how often I become so lost in the processing of language that I lose my train of thought altogether.  So, every time I see one of the “buts” come up, I desperately want to engage that person in conversation and try to help them get a bigger view of the situation, a zoomed-out perspective, so that maybe they will see the validity, the rightness, dare I say, of accepting autism.  The trouble is there are other endeavors that require packaging up my thoughts into neat little word-bundles.  Some are commitments, like school and work-for-pay and contractual writing agreements.  The next tier to which I attend involves post-writing, because expression, putting things out there, is easier for me than the dreaded third tier, which is communication.  Sometimes, I write posts and then fail to respond to comments, because the communication piece is overwhelming and hard and I simply have run out of word-bundling energy.  But that third tier is still hugely important, so what I want to do here is address many of the “buts” (reasons people can/will not accept autism) and rebut them.  This way, I am moving it to second tier, or expression.

*This is my fourth or fifth small edit to this post, but I realized how important it is.  I do NOT believe in a one-size-fits-all directive to how to work with autistic kids and adults, nor do I even believe in a one-size-fits-all ideology behind the choices that benefit such a wide variety of individuals.  Not every word I say here is likely to work for you, and that is fine.  You might find some words that do work, or you might just find that the spirit of the thing gives you a take on autism you haven’t thought of before.  Whatever works, take it.  What doesn’t, leave it, but please do so without attacking the people for whom it DOES work.   Taken as a whole, this post reflects the predominate spirit of autism acceptance (even if it does so imperfectly!).  It does not reflect everything I have always believed, and therefore I do not expect every person who reads it to be at exactly the same “place” as I am in writing it.  It also doesn’t reflect everything I always WILL believe; my experience has taught me how constantly beliefs and understanding are in flux and I know nothing more certainly than I know that my beliefs will, someday, change in some way.

1. But my kid isn’t high-functioning

Let’s talk functioning labels, shall we?  I’ll describe two people, and you decide which is high-functioning and which is low-functioning.

Person 1 cannot cut food using a knife and fork, has never held a full-time job, has received adult state waiver services, and needs someone to assist her in crossing the street and in parking lots.

Person 2 has a college degree, drives, and has flown across the country on her own.

Okay, that one was easy, right?  Obviously Person 1 is higher functioning… but they both describe the same person!  That’s my first point, which is that people are far more complex than this dichotomy allows.  It’s not up or down, yes or no.  We are human beings, and we appreciate it when you afford us a view that accounts for our humanity, which is not so simple as placing us in two categories.

People often see my writing and dismiss me as being “too high functioning” to know what autism is really like.  I find that those of us who are verbal are dismissed as not being able to understand, but, in the same moment, those of us who are nonverbal are dismissed as not having the ability to understand.  More and more, we are finding that people who cannot speak have a disorder of movement rather than thought; their minds are brilliant, but they have bodies that do not obey.  Many a parent who has thought her child to be incapable has gone on to find out that the child has remarkable abilities.

There are people whose autism expresses itself in every way imaginable, all over the spectrum, who stand for autism acceptance.  Many autistic people who are nonverbal and require intensive supports are included in this group.  Check out this post by Amy Sequenzia and this one by 12-year-old Emma Zurcher-Long, both of whom type to communicate.   We cannot exercise judgment or withhold our approval of someone’s personhood because of the way their autism expresses itself.  People whose autism is well-hidden also face intense challenges because of the way society is structured, and people whose autism is very obvious, of course, have gifts to offer, too.  All people deserve respect for who they are, regardless of how readily they fit into to society’s norms and thus how others perceive them.

Accepting autism does not mean that you have to accept that autism doesn’t present challenges.  It certainly does, but those challenges stem from the way society is structured and how society treats autistic people, not from autism itself.

Autism acceptance, at its core, means that you realize that your energies are better spent helping the child you have rather than constantly trying to shape that child into the child you think he should be, could be, or might have been.

 

2. But I don’t have access to services

Oftentimes, services intended to help autistic children actually harm them.  Think about the way many behavioral service providers force children to make eye contact.  They put their hands on the child’s face as blinders, or they take the child’s chin and turn him to face the therapist.  This is a huge violation of privacy.  Have a stranger do either one of the above to you; how does it feel?  How would it feel if you weren’t prepared for it and willing to do it?  Making eye contact makes it difficult if not impossible to hear and learn for us, at best, and at worst, it is physically painful.  These services also put a huge emphasis on speech rather than allowing a child to communicate in the way that is best for him.  They ignore sensory sensitivities.  Many “treatments” to “heal” a child’s body are unnecessary or even dangerous.  Children spend their entire early years in therapy rather than learning in the way that they learn best–through their senses.

Nearly thirty years ago, Tito Mukhopadhyay was an autistic child growing up in India.  He was completely nonverbal.  His mother, Soma, did not have access to disposable diapers, let alone professionals who could work with her son.  She learned about the way the brain works and used common sense to work with Tito.  Through these efforts, she developed the Rapid Prompting Method, in which she works with nonverbal or minimally verbal autistic individuals to work toward the goal of spelling on a letterboard or keyboard.  She has brought communication (not PECS, not single words, but true open communication) to many hundreds of people.  As for Tito, he is a published author who is able to write independently with pencil and paper.

Another example of an autistic child whose family chose to encourage his interests rather than do extensive therapy is Jacob Barnett, a teenager so gifted in math and science that he is on track to win the Nobel Prize.  As a child, his parents took his intense interest in playing with water and glasses and showed him how to make sounds by hitting the glasses and the science behind it.

Therapy is not all bad; please don’t twist my words.  But, not all therapies are the best route for every child.  Many therapies focus on making a child appear to be typical instead of helping him navigate the world in a way that allows him to be autistic.  And the absence of available services is not a reason to despair and lose hope for your child.  Your child can be successful (and success is defined individually)… and autistic!

 

3. But my kid can’t communicate.

Every. Single. Person… can communicate.  There are absolutely no prerequisites a person must meet to be ready to communicate with those around him.  This comes down to presuming competence.  I have met too many autistic adults to keep count who were assumed to lack intelligence and have no ability to communicate for years, and sometimes decades.  Their minds are fully intact, and they yearn for a way to show what they know.  For some, autism is not so much a difference in cognitive experience as it is a motor impairment.  For these individuals, their brilliant minds take everything in… but their bodies do not obey their minds, so they do not have a means of showing us what they know.

I meet parents who identify their autistic children, in various ways, as incapable… incapable of learning, understanding, and communicating.  We must believe that every person is competent.  We must presume they understand every word we say.  Yes, your child, too.  I heard from a parent who said that her son had a massive meltdown while she met with a new behavior specialist and went over her son’s history.  I asked if they had gone over the boy’s most troubling and difficult times.  They had.  I asked if the boy had heard every word.  He had.  Now, I ask, how might you feel if you sat for two hours while two adults reviewed all the worst, most vulnerable moments of your life, and you did not have the ability to speak out and explain what was happening from your perspective?  I’ve been in that situation… and even I, the most passive and least likely to burst with anger, person I have ever known, had a massive outburst.  If we are going to talk about a child while he is there, we absolutely must allow him access to reliable means of communication so that he can give his input at any time.  If this is not possible, the conversation must wait.

Some autistic kids are aggressive toward self or others, and much of this aggression stems from a lack of communication.  Instead of thinking that we must stop the aggression so that a child is ready to communicate, we have to think of the opposite… that a child must have a way to communicate in order to stop the aggression (for more thoughts on aggression, check out this post on the blog We Are Like Your Child).

There are many options available to introduce possible ways of communicating.  Many start with PECS, and while they are a very basic start, they do not allow the person access to true self-expression.  It is crucial to focus on literacy and words.  Time and again, we see that these non-speaking individuals have remarkable skill with words.  Encourage it.  Build upon it.  I see children who can spell flawlessly, yet they have no constant access to letters or a keyboard.  This is maddening.  I cannot fathom why it is so unusual to find a speech pathologist who has experience in AAC (Augmentative and Alternative Communication) and who actually encourages its use.

Find one.  Find one who believes in your child’s competence.  But first, you must believe it.  If you take nothing else from this post, take this: Presume competence.

 

4. But society won’t accept him 

“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It’s that you’re destroying the peg” (Paul Collins).

When most typical people think about autistic people, they think we’re abnormal.  There is this implication that normal is good, and abnormal is bad.  Think about what falls into society’s definitions of “normal” for a minute.  Things like mile-a-minute talking and general apathy come to mind… mild annoyances, right?  But, it’s also normal to put yourself first, work for a love of money, tell white lies, gossip about your friends, and change who you are to fit in with a crowd or find a mate.

So, not only are you “destroying the peg” to accomplish “normalcy,” but just what exactly are you trying to accomplish?  Why are those traits so sought-after that we destroy our kids to attain them?  We tell them to force themselves to make eye contact, even if it means they can’t listen at the same time, and even if it’s painful.  We tell them to “love what you love… just love it less,” quashing their passions and possibly their futures, since passions often lead to work for autistic people.  We force them to socialize the “normal” way… no matter how grossly twisted normal socialization is in our society.  We tell them that it’s better to fit in than with everyone else and wonder about your identity than it is to be who you are and love yourself for it.

Some autistics can “pass for normal.”  I can.  It’s exhausting, and by the end of a day of still hands and social conversations and watching people’s mouths in an attempt to demonstrate my interest in their words, I am physically sick and sometimes totally incapable of speaking a word.  I’ve reached a point where I value myself enough… more than that, I value my God who made me who I am enough… that I very rarely put myself through the forced hiding of all of my autistic traits for the sake of other people.  I don’t make noise in church or have a royal meltdown in the middle of a family event (if I can help it), but there is a difference between things I can refrain from doing in a moment (but can maybe do later) without significant deleterious results, and things like saying forget eye contact, or forget socializing for hours without a break, or forget walking down the sidewalk and just “dealing” with the train passing by without holding my ears… all for the sake of, “So I can look normal.”

I mean, there are so many bad things associated with being a woman in our society.  They’re moody.  They’re overly emotional.  They even get breast cancer.  So, why don’t we force all women to make themselves look like men and act like men.  That way, we can all save ourselves the upset of dealing with and thinking about traits of womanhood.  It would make all the men feel better.  The women, well, who cares how they feel?  Who cares that they can’t express their identities, the very way God made them to me, the way their genetic material makes them act and speak and be?

Autism is a neurological wiring of the brain.  Like genetics, it is not something that can simply be undone or done another way once it exists.  There are bad things associated with being autistic in our society.  But, by forcing all autistic people to act neurotypical, all we’re doing is saving the NTs the trouble of being made to feel uncomfortable as we deny autistic people the right to express their identities, the way God made them, the very neurology of their brains.

The solution… well, it’s a situation of the thing that is right is not the thing that is easy.  It may not be easy (ask any autistic person) to force autistic kids to cover their autistic traits (and that’s all you’re really doing with most therapies), but it is harder yet to step up and aim to change society.  But, if we believe that all people are equal, that all people are truly people, then it is the only right course of action.

 

5. But you’re saying this from a position of not knowing what “real” autism is like.

I call total and utter hogwash.  I also call disrespect.

Let’s say a professor walks up to a kindergarten teacher and says, “But you don’t know what real teaching is like.”

Or how about the owner of a golden retriever tells the dad of a beagle to “get a real dog.”

Does a novel writer tell the poet to write something real?

My experience of autism is my experience, and telling me that I haven’t experienced “real” autism does a few things:

First, it’s incredibly presumptive.  You walk up to me, hear me say something like, “You denial of my neurological status based upon your presuppositions of legitimacy is incredibly presumptive,” and immediately dismiss the rest of, well, everything.  It’s taking a moment in time, and by a moment, I mean a minute, yes, but it could also be an hour in which sensory stimulation is minimal and conversation topics stick entirely to the topics in which I am well-versed for verbal communication, and you isolate that moment as if it is illustrative of a lifetime of experience.  You presume to know me, all of me, because we’ve talked briefly about a preferred subject.  Take me to Target.  Cross the street with me.  Come with me to the mall, or to a party, or, here’s a good one… to the fireworks!  Even a change in the topic of conversation or meeting later in the day (when my tolerance is less) or when the moon is in the seventh whatever-it-is… and you will see a different version of me  The thing is that the stimmy, overstimulated, growling with frustration cause I can’t get the words out version of me is no less “me,” and no less indicative of my everyday experience.

Second, you deny me all the struggles I’ve been through to get where I am.  You deny the two years with very little verbal communication, the number of times I’ve been called rude or immature or disrespectful by teachers and professors, the three-month-long migraine I had as a result of student teaching (where they called me “socially isolated” and impossible to communicate with) which I was asked to leave after two weeks.  You deny me the five or six hospitals admissions as a result of the intersection of anxiety, frustration, overstimulation, anger, and twenty-one years of no one having a clue what I was all about.  You deny me twenty medications I’ve been through in an attempt to make my brain come to a place of being able to deal with the sensory world around me and the anxiety that used to overtake me.  You deny me the countless lost friendships and total heartbreaks of losing a lifelong best friend for reasons I could not begin to understand as a 16-year-old.  You deny me all the pain… not that autism has brought me… but that resulted of living in a world not made for me.

You also deny me the legitimacy of my overwhelming joy… The joy working through so many struggles, gaining skills, adjusting and compromising and relearning my whole way of looking at myself and the world.  But, you also deny me the joy of being a person who isn’t like most of the world… the joy of being included in a subset of people who are filled with talent, ambition, and a tendency to be incredibly gracious, kind, genuine human beings.

My ability to type well says absolutely one thing about me: I type well.  It says nothing about the rest of my life and the challenges I experience to fit into this world, nor about all I have overcome and my achievements in work and my merits as a person.  My experience of my autism is my own and only my own; I do not presume to know anyone else’s experience, so please don’t presume to dictate my own to me.

 

6.  But you’re not a parent 

So many books, blogs, and other sources of information are written or begun by parents.  I believe that when a child is newly diagnosed, the parent should first and foremost be referred to writing and information by autistic people.

Parents know their individual children better than anybody.  But, if your child goes through med school, it doesn’t mean you know what it’s like to be a doctor.  If your child is gay, you don’t claim to be the authority on experiencing life as a gay person.  Being a parent makes you the authority on your child, but not on his experience.  When it comes to autism, another parent can give you parenting advice, but she is not the person to turn to for information about experiencing life as an autistic person.

For that matter, neither am I, at least on my own.  When you read my experiences, you read MY experiences.  It is through the collective experiences of many autistic people, through the common threads of our experiences, that a parent can begin to gather a general idea of what it is like to be autistic.

I generally don’t offer much information about how to parent autistic kids.  The subtitle of my book (“An autistic’s thoughts on raising a child with autism”) touches more on the experiences I’ve had that might influence the way you view your child’s behavior.  I offer little direct parenting advice… because I’m not a parent.  I ask that parents give me the same respect by not trying to offer their thoughts on what it’s like to be autistic (unless, of course, they ARE autistic).

 

7. This is evidence of your lack of empathy for other people 

Let’s debunk this empathy thing, shall we?  In other words, let’s keep on beating that long-dead horse.

Autistic people do not lack empathy.  Every time I talk to my mom (daily), I ask her if she’s checked our long-haired kitty for mats in her fur.  I worry about it because if mats go undetected, they can end up pulling at the skin and hurting… and the thought of my sweet kitty in pain is more than I can take.  Yes, this is one very small example.  I could continue to list examples, from my own life and those of every other autistic person I know, from now until forever.  I can tell you about the young woman at my social group who handed over her round of cards so that I could have a turn at playing, or my Jewish friend who made me a beautiful Christmas card because she knows it matters to me.  We could be here all day, and all night, and so on, forevermore.  Autistic people DO NOT lack empathy.

People tell me that when I focus on the positive aspects of autism that I “don’t understand” how hard it is to parent an autistic child.  I don’t, but I know how hard it is to BE an autistic child; that knowledge doesn’t mean that I think it’s in anybody’s best interest to focus on negativity.

I often see parents post the gory details of their autistic children’s experiences for the world to see… details of changing bodies and meltdowns of massive scale.  How would YOU feel if your parents posted those details for the entire world to remember forever (AKA, on the internet, as we now call it)?  How would you feel if the whole world was in on the details of your first period or the most upsetting night of your life in which you lost all control?

In other words, how about some empathy for your child?

Typical people say that autistic people lack empathy, and yet it is typical people who continue to demand that we undo ourselves, our mannerisms, our comfort, what we like and how we express it, for their sake.  It doesn’t matter if it causes us pain or forces us to deny the way we were created to enjoy this world and our lives… you want us to be your way, and so it shall be.

And you say that we are the ones without empathy?

 

8. But my kid hates his autism.

I really do hate my schmoogiddybomp.  Don’t you hate yours?  Darn those smoogiddybomps… they really get in the way of so many things.

Wait, you don’t hate your schmoogiddybump?  Why on earth not?  Everybody hates them!

Okay, enough, but, let’s do a little dissection:

  1. You don’t hate your schmoogiddybomp because you don’t have any clue what on earth that is.  You don’t have an attitude or opinion about something you’ve never heard of.  Neither are kids born with an inherent knowledge of what the word “autism” means.  They only know what we teach them.
  1. If everyone around you, for all the life you’ve ever known, has hated their schmoogiddybumps, chances are good you’ll grow up to hate yours, too.  The predominating viewpoint that surrounds you has a really big influence on how you view things… and our kids are hugely influenced by how we talk about them, including how we talk about their autism.
  1. Many autistic kids know that they’re different.  This is where our words and interactions related to autism are more important than ever… because we have the ability to shape the way they view these differences.  We can teach them that they are the problem, or we can teach them that the world is the problem (and thus make them hate other people)… or we can teach them that people are good but fear what they don’t understand, and guide them to be advocates who help to change the world for the better.

 

9. But my kid has anxiety/epilepsy/anger, etc., that are ruining his life.

Some autistic people have anxiety.  But autism is not anxiety.

Some have epilepsy.  But autism and epilepsy are not one and the same.

Some have anger, mood disorders, GI issues, learning disabilities, and cognitive disabilities.  But none of those things are equivalent to autism.

Autism has a set of criteria that describe a person from a behavioral standpoint.  That means that we define autism from what other people see when they interact with an autistic person.  We describe their communication challenges, social differences, and reaction to the environment.  Interestingly, we do not ever consider what autism is like from the inside.  We don’t ask autistic people what they experience, in any way or at any point, when we seek to describe what it is.

There are some conditions that autistic people are more likely to have than their neurotypical peers.  Anxiety is a great example, especially the social variety.  Imagine how you would feel if your experience were like mine.  People love me and act very kindly toward me, then they flip out, scream, or totally shut me out of their lives without warning.  The reality is that there is a slow progression of frustration and inability to cope with my behavior or quirks or whatever it is… but, socially, I miss the cues.  I miss the cues to back off, to tread carefully, to check in and say, “Hey, am I bothering you somehow?”  So, the first cue I get that something is wrong is when things totally bubble over to the point of no return.  The person is absolutely furious that I have ignored all the “obvious” cues.  It doesn’t happen often anymore, due to a combination of having the right friends for me and the knowledge that I’m autistic… but, it’s happened enough times that I have an inherent anxiety toward friendships.  In short, the autistic experience of the world is that it is unpredictable, so we often function with a certain amount of anxiety toward that unpredictability.

But anxiety is not autism.  It is separate.  It can be debilitating, as can epilepsy and mood disorders and everything else… but we cannot blame those issues on the person’s neurology, because they are not a part of the neurology.  In fact, they are part of the fact that we live in a world that doesn’t allow for unique neurologies.  If people understood that a large sector of the population has certain social and communication traits, and if people could identify what it means for practical interaction when someone says they’re autistic, we could hugely reduce the cause of the buildup of social anxiety.  The problem is not my brain, it is the social constructs that surround me.

As far as medical issues… trust me, I know.  My autism stems from what is most likely a mitochondrial disease.  I have intense health issues, involving a feeding tube, ostomy, insulin pump, IV port, and spending the last 15 months in a nursing home.  A subset of autistic people (something like 5%) have mitochondrial disease… being that mito is progressive and without treatment, I could very easily make the jump to hating my autism.  I can treat my medical issues, and sometimes, when my body feels better, I am more social and more communicative, but this does not mean that I have treated or seek to “cure” my autism with medical intervention.  I believe that God makes beautiful things out of ugly situations all the time, and in many ways, though my medical situation is horribile, and being autistic in an NT world can be mighty tough, too… but, a creative, passionate, quirky-to-the-max mind and experience of the world is a beautiful thing that I relish in the midst of all the difficulty.  I won’t discount the beauty because it comes from hardship.

 

10. But I don’t want my child to suffer.

I believe, wholeheartedly, that you want the best for your child.  Every parent does.  So, even when I hear talk of cures and treatments and other words, I am completely sure that it comes from a place of wanting your child to be happy and healthy and whole.

He already is.  You can stop fighting.

When parents talk of curing autism, they mean that they want to ease the child’s suffering.  Autistic people do not suffer from autism.  Julia Bascom, over at Just Stimming, wrote this post about the deep joy we feel in our sensory world.  Sometimes, autism makes it harder for us to live in this world.  This comes back to changing the world, and not your child.  I also raise the point that your neurotypical brain also has certain things about it that make your life harder.  If we were to generalize (and trust me when I say that there are many exceptions on both sides of this), we could point out that NTs have significant struggles in terms of peer pressure, alcoholism, and even romantic relationships… things that many or most autistic people simply do not pay much mind.  But, then, think about my ability to catch grammar mistakes and connect with animals, and suddenly, it becomes clear that the NTs around me are the ones with the disadvantage.

Someone close to me recently said, “But… I think you don’t know what you’re missing!”  That’s an extremely ableist way of thinking; you’re saying that your non-disabled experience of the world is inherently better than mine… and that leads to some very scary places.

At this point in time, the only “cure” for autism on the horizon is the prospect of a prenatal test.  Down Syndrome has such a prenatal test, and, at least in Europe, a whopping 92% of children who would have had Down Syndrome are aborted.  Ninety. Two. Percent.  All the money spent seeking a “cure” to autism will have only the result that I likely would have never been born.  Also, think about the how-many children and adults who live with autism could have received services for the exorbitant cost that will ultimately lead to this prenatal test.  Instead of providing services, we’re finding a way to keep people from ever having the chance to live, and that is terrifying.

There is no other current possibility of an autism cure.  If there were, I believe that it would be downright impossible to undo the traits of autism without inherently changing the very person.  You would not have a non-autistic version of your child, but a totally different one.

In the end, I return to my original statement.  Accepting autism is not about accepting suffering and pain or denying resources and services to anybody.  If a therapy, a diet, a medication, anything at all… if it helps (without harmful the child physically or psychologically)… then by all means, do it.  Acceptance is only about accepting that you have a child, and that your time and energy and money is best spent helping that child be the most awesome him he can possibly be rather than attacking an integral part of who he is.

11. My child has autism.  Would you stop saying that he’s autistic?

Person-first language, popular in education circles, dictates that we refer to “people with…” as a means of emphasizing the person over the condition.  Identify-first language (“disabled person” or “autistic child”) is based on the idea that a person cannot be separated from certain aspects of his or her identity.

We say that we are female and American; we don’t say that we “have femaleness” or “have Americanness,” because these are traits that are constant and inform the essence of who we are.  Similarly, we “have a cold,” because the cold is temporary.  Autism is not temporary, and neither is it separate from my every single moment and experience.

Autism is like the flour in a cake.  Once the cake is baked, it is impossible to remove every grain of flour from it, because a chemical reaction has made the flour an integral part of the cake’s existence.  In fact, if you could somehow pull out every grain, you would no longer have a cake at all.  Take my autism from my body, my mind, my cells, my soul…. And you would not have “me” any longer.  Now, there are recipes for flourless cakes, but they require a totally different approach from the start.  There are “recipes” for neurotypical people, too, but they must start as NT.  Those of us who start life as autistic will always remain cakes that have flour in them.  Most behavioral therapies serve only to change the autistic person’s outward appearance, often at the cost of his ability to cope in the world.  It is not possible to turn an autistic mind into an NT one, just as it is not possible to take a regular cake and make it a flourless one.

Just as the Deaf community has a unique culture, so does the Autistic community.  Many choose to capitalize the A in Autistic or Autism when referring to our culture; I haven’t yet taken to this practice, but it’s not a reflection of my ideology so much as it is of my habit.  In our community, to call ourselves autistic is a source of pride, not one of derogation.

In the end, our community respects each person’s choice of language, but, the vast majority of us prefer identity-first language and seek to educate parents on why we speak and write as we do.  This is a key issue in the matter of autism acceptance, and almost serves as a litmus test or a flag that tells others of your perspective on autism.

 

There you have the “buts,” and my rebuts to each point.  The list is not exhaustive, neither is it perfect.  If you have additional ideas about “buts” to address and rebut, please get in touch with me, either via comment on this post or via the Facebook page for this blog.  I’d love to work toward a more complete list, but I need your help and a sort of meeting of the minds to get to that point.  As I said in the beginning and I will repeat again now, I will do my very best to engage in respectful discussion on any of these points.  What I will NOT do are two things: I will not go round-and-round and repeat myself, and also, I will not engage in discussion when it’s unreasonably stressful for me to do so.  I have a LOT on my plate; I’m moving back into the community after 15 months in a nursing home, I’m working on my thesis as well as taking a course that has me assisting in an undergrad course, and I’m dealing with my usual health issues, not to mention the stress of communication and the fact that it takes significant time and effort for me to engage in that manner.  I’m not ignoring anybody (unless you’re repeating yourself endlessly, then I am ignoring you!), and I’m not shirking any discussion… I’m just doing the best that I can with what I’ve got!  I always try (and will continue to try) to remain respectful and compassionate at every step–that I promise you.

That’s where we start: mutual respect and compassion.  Let’s build on that and see where we can go…

Meeting in person after two years of work and friendship online!

Meeting in person after two years of work and friendship online!

Autistic.  Respect. Friends.  Community.  Awesome.

Autistic. Respect. Friends. Community. Awesome.(Chloe Rothschild and I rocking age-inappropriate while celebrating her 21st birthday at Cedar Point)

 

Sondra Williams and I (Lydia) at OCALICON2013.  Sondra is an incredible mentor and friend who uses her experience to guide young adults on the spectrum as we seek to become advocates.

Sondra Williams and I (Lydia) at OCALICON2013. Sondra is an incredible mentor and friend who uses her experience to guide young adults on the spectrum as we seek to become advocates.

 

And then, the mentees go on to mentor... Chloe and Brooke (both autistic) in a moment of pure connection

And then, the mentees go on to mentor… Chloe and Brooke, of A Diary of a Mom, in a moment of pure connection

77 thoughts on “Buts and Rebuts

  1. WOW. This is fantastic. Thank you very much for it. I’m a parent of a 7 year old PDD-NOS kiddo, and I’m seriously glad I found autistic bloggers and neurodiversity parents (like Emma’s Hope Book). My son falls under the “high functioning/not real” category (Grrr). But he looses his words when he’s overwhelmed, he doesn’t recognize subtle social cues, he’s already a geek. He’s so GENUINE – he still has that unfiltered self of a 3-4 year old, that stuff that gets squished out of many of us NT’s by the social pressures of the world. He’s different. But to some autism parents, he’s not different “enough” and that pisses me off.

    I want you to know that for every freaking annoying parent out there, there are those like me who grab on to your words and the words of autistic bloggers in general. We seek out parents like Emma’s who presume competence. We do what we can to push against the buts (and the butt-heads). Thank you, thank you, thank you.

    • I just totally cracked up at the buts and the butt-heads! Hahaha! That’s fantastic! It sounds like your kiddo is wonderfully unique and that he has a mom guiding him to grow up to be his wonderful, unique, autistic self. Thanks for leading the way in such a positive way for him and for setting a great example! It should NEVER be a competition. I admit that I lack any competitive spirit whatsoever (except against myself!)… so I just cannot get my mind around this “I’m sicker than you” or “I’m more autistic than you” or any of that nonsense. Let’s all just be who we are and reflect God in our own ways!

      • Haha – I’m less competitive than you! (sarcasm ;) Yeah, it’s frustrating. I have this with some extended family who has children on the spectrum, one of which faces much greater challenges with communication, etc. I can’t share or communicate because it would be a competition (sigh). I hope all the good stuff comes together for you and that you find more people that get it and enjoy you being you.

  2. Love this! My child is referred to as ‘severe’ by her medical doctor but it’s so irrelevant as to be laughable. She is Evie. An adorable kid with an infectious laugh and a clear joy for life. She has challenges that most other 4 year olds don’t have but she’s also missing so many of the negative traits that NT kids manifest. She hasn’t got a mean, snotty bone in her body. I am so lucky that I found the Autistic community so soon after her diagnosis so I could avoid the negative spiral that so many parents seem to fall into.

    Thank you so much for your thoughts.

    • I love that you pointed out that autistic people have challenges that NTs don’t… but NTs also have challenges that autistics generally don’t have! That’s true and very important. I’m totally uninterested in romance, but also totally and completely fulfilled in the friendships I have. I don’t care about peer pressure, either. So, there are some definite ways that autism makes my life easier!

      • I can relate to the lack of interest in romance. In my case, it just makes me too uncomfortable and stressed out to handle, so I’ve decided I don’t want it. But thanks to that, I feel like I appreciate my friends more and am closer to them than I probably would be otherwise.

    • So very true ,we have a little boy described like your child ,and he is wonderful and loving but has is issues as well.I have a aspie wife ,and daughter ,both bringing their qualities and foibles to my life its very enriching and equally frustrating, I love them all x

  3. Lydia, may I link to this on a website I’m putting together? This post covers SO much that’s important for parents/family, practically anybody to know. Autism touches my extended family in many ways, which is what inspired the site.

    I started a facebook page for it – Autistikids; the page itself is under construction. The facebook page is a reflection of the website – autistic voices, neurodiversity-autism parents as the focus; quick access for autism parents/family, etc. to the voices we need to hear. I hope you like it, and appreciate any suggestions on subjects you find important, etc.

    Thank you for sharing!

  4. Hi Lydia,
    I am the parent of the MOST delightful 4 year old boy with the diagnosis of ‘mild ASD’ (I.e. The not REAL autism category) and I am so inspired after reading your post. Ever since we got the diagnosis I have been seeking out anything written by autistic adults so I can get some idea not only of what it might be like to be him but also of the type of person he might grow up to be and the challenges he faces moving forward. I see you refer to difficulties appearing ‘normal’ and being understood by NT peers and therefor relationships breaking down? How important, then, do you think it is for my son to socialise with autistic people? Does that make for mor meaningful relationships as there is a mutual understanding of the social challenges and also not and expectation on either person to be able to read those ‘cues’ you talk about? I ask cause it’s time to think about schooling options and the decision lies with how ‘mainstream’ I decide to go or whether he’d be happier in a support class with autistic peers. P.S. My son is very lucky to have the most wonderful therapists who have never ever tried to beat the autism out of him, but have just worked with him to make him the best version of himself- and I have just seen him grow In confidence and his wonderful personality has just blossomed. I live in Australia, and our national organisation Aspect (Autism Spectrum Australia) are really great advocates for the acceptance type therapies.

    • Hi Amy,

      You ask fantastic questions! It is EXTREMELY important for autistic people to know other autistic people… and to know them in a way that allows them to just “be” together and interact in whatever way is natural (as opposed to settings that force autistic people to interact in NT ways). But, it is also important for autistic kids to have access to the general education curriculum, to challenges, and to typical peers. In other words… BALANCE! There is no one right answer when it comes to school placement… it totally depends on each kid. I find that, when it comes to having autistic friends, that, yes, there is a certain getting it and getting me involved, but even more importantly, there is an overarching respect… so that when we DON’T get each other, we still have total respect for the other person’s ways. That is also really, really important and a reason why my friendships with others on the spectrum flourish. That said, I have a few NT friends who have that respect, too, and they are no less amazing friendships. It’s a trait that I find more common in autistic people, but it is certainly not exclusive!

      • Thanks so much for your reply. It’s extremely helpful. The main thing I got from your response is the importance of awareness and education of how autistic kids function to NT kids and parents of NT kids. With awareness and understanding comes respect for those differences in how autistic people operate. I know one or two parents of ‘high functioning’ kids who hide away the fact that their children are on the spectrum and that’s really sad. I talk about it every chance I get- not to explain limitations but to explain differences and complexities in my sons behaviour and thinking. And when I share these things it’s mostly to share the JOYS if having a child on the spectrum- not the challenges. I think that while it might come easy for me it is a really hard thing for parents to do especially if they haven’t ‘accepted’ the diagnosis itself or haven’t educated themselves on autism.
        Also, what I got from your response is a hunger to find my son some more playmates on the spectrum! We have already arranged a play date tomorrow with a friend of mine whose son is on the spectrum- but he’s 3 years older- so I am certainly going to seek out more opportunities for him to play with autistic kids his age and maybe that will also help with the schooling decision. We’re lucky here to have support classes in mainstream schools-,where the kids learn with autistic peers in smaller class sizes whilst in the classroom but at within the general mainstream school community and are given opportunities to form relationships with their NT peers. And if need be- they are given the option of transitioning to mainstream classes too if they wish. That’s what I am considering at the moment.

  5. Wow, just wow!
    Lydia, Thank you for taking the time it took to compose this amazing blog. As a NT NMT (neurologic music therapist) I have been discovering so many of these truths through my work since I really started presuming competence, working from an understanding of the motor disturbances of autism, and have learned to communicate with my clients through supported communication and Rapid Prompting Method. You can learn so much if you ASK. ..and be ready to LISTEN!
    There are so few resources to share from this perspective, compared to the mounds of myth-filled resources out there that presume anything but competence! I plan to share this with every client, parent, caregiver, teacher, physician, and facebook follower I know. It is a MUST read!

      • Casey, working with movement challenges is SO IMPORTANT and it’s awesome to see an available resource like this! I am not much help in raising money, but if I think of anything, I promise to let you know. What about starting a Facebook page for people to follow? I know I would! I love what you’re doing.

      • Thank you, Lydia, for your support and encouragement! Our clients and students tell us again and again what a difference it makes when we understand and support their movement challenges and how this underlies so much of the misunderstanding they face from society. Here is the link to our Facebook page : https://www.facebook.com/optimalrhythms
        I’d be honored if you would follow us and offer your expert feedback along the way! I believe self-advocates are the best experts to help inform our clinical practice and educational programs. I welcome you and any others who are interested in our work!

  6. I have three children with Autism of differing degrees, I also have Autism myself (the ‘not real’ Aspergers Syndrome).

    Many of these uptight parents forget that their autistic children will one day be autistic adults. Adults with all kinds of emotional baggage from the ‘help’ they recieve. No one knew about autism when I was a child, but my father did everything he could to change me into the ‘man’ he wanted me to be. I grew up hating him with every fibre of my being, and determined to not be the person he wanted me to be.

    I now take great joy in allowing my kids to be themselves and express themselves autistically. In my kids I see the freedom of expression and pure joy of being Autistic that I was never allowed, and that in turn encourages me to just be myself.

    Even though my diagnosis says Aspergers I have always called myself Autistic, with a capital A, because that is how I identify myself. If being Autistic means having age innapropriate interests, and having a poor gender identity then so be it – that is who I am. I love sitting with my kids playing with Lego, and don’t feel I have to justify that by pretending that it is a parenting thing. Its an Autistic thing that I do because I enjoy it for its own sake, because I’m not afraid to be a kid like NT’s are.

    That’s not to say that raising autistic kids is easy – my youngest has major continence problems, will not eat anything healthy, and is very difficult when he does not want to do something. But when allowed to just be himself he is an absolute joy to be around. And it is that Autistic joy I prefer to concentrate on – not the negativity that the anti advocate parents seem to be obsessed with.

    Be yourself, be proud to be different!

    • Hi Graham! My favorite part of this, somehow, is about the Legos… it could not be truer. I have some thoughts running through my head about the idea of “magic,” and how some of us on the spectrum never lose our childhood awe and sense of magic. I will write about it sometime… but that’s what I see with your attraction to Legos and ability to get down and enjoy them with your kids. You haven’t lost your joy in the smallest experiences… that’s magic!

      • Some NT people still have the joy of playing with Lego – my husband certainly does. I think a lot is about keeping joy about who we truly are individually and honouring ourselves – as well as others around us.

        Perhaps NT people try so hard to ‘fit in’ that they (we) lose that ability.

  7. This post is all kinds of fabulous – I’m an autistic adult – but the comments are also heartening. Lately it’s seemed that every parent of an autistic person I come across has been horrible to deal with – they’ve gaslit me about my own experiences, told me I’m “not like their child”, and said that I was being angry or rude “because of my autism.” Seeing parents react to your post with understanding and openness gives me a bit of hope that maybe there’s more who understand than I’d thought or feared.

  8. Love this! Thanks so much for taking the effort to get it into words. As a parent to an autistic 11 yr old son, I have learned to learn from the autistic self advocates….not sure why most people don’t go “straight to the source” when wanting information, but as an advocate for other parents, I always point out information, about any given question, to an answer by a REAL, LIVE autistic person!! some of us parents take a little longer to get “it”, but the beauty we find is amazing and often leaves me in awe….take care.

  9. I love this.
    My daughter was very recently (6 days ago) diagnosed with autistic spectrum disorder- PDA. (PDA is a relatively new discovery in medical terms, as they take an age to do anything), but your blog is truly eye opening, and I find myself agreeing with every point. I want my daughter to embrace her autism because it is WHO she is, not a part of her you can remove.
    I am proud to be her mum.

    I shall spend time later reading other posts on your blog in my quest to understand Dinky, as I totally agree, if I want to know more about autism, I need to find out from autistic people.

  10. Lydia, this is in my top three ever posts about autism. Everything you touch on here is extremely important. I’ve read it to my son who is 14 and non verbal and he said it was “eminent awesome.” If I may though address one thing regarding services. I wholeheartedly agree about the therapy services you speak of. We did in home intensive therapy and I would absolutely NOT do it again if I had to do it over. However, right now my son and I have literally been stuck at home for two months, only going out in the car occasionally, because he’s having an extremely rough time with anxiety and I cannot safely take him out alone. And yet, I’m waiting and fighting for basic respite care for a few hours here and there so that I can do things like grocery shop, and take my other children out. I’ve also asked for someone to help me take him out so that he’s not stuck at home so much, to no avail. These are things that are supposed to be covered under the autism community service waiver, but every year our gets harder and harder to “prove” to the state that these services are needed. I’ve also had his swimming taken off his service plan. As a single mom of three this has made things very hard! My son is struggling to deal with things that he can’t help, and I’m rather powerless to help him, and to function normally as a family, without these services. I just wanted to point that out, so that people can know that services aren’t all about therapies. Thanks for putting this together Lydia, I’m going to be sharing it!

    Also, my son communicates using a letter board and has a blog, if you’re interested in taking a look . https://rosesareredforautism.wordpress.com/

    • I think, perhaps, a really important factor of services and support is the family (or individual) having a say in WHAT support they get. So many services aren’t focused on “let’s figure out how to help you live a great life” but “let’s figure out how to make you act as NT as possible.”

    • Thank you for sharing your son’s blog. AMAZING… and very consistent with the experiences our students are sharing with us at ACCESS Academy in Evansville, IN. Sharing….

  11. Thank you so much for this! I found it heartening and eye-opening. My daughter is autistic and we quite often get disbelief from others about it. “but she’s so articulate” they say. And she is, but she can also be completely nonverbal and growling or throwing things. It really depends on the situation.
    In coming to terms with her diagnosis we are striving to keep a balanced perspective – keeping in mind the advantages she has, as much as the challenges. Hearing from autistic adults is something that I think will really help with that. I will be following your blog now, and searching for others.
    Thanks again!
    – Laura

  12. So glad to have found your blog! My husband has Asperger’s – the higher end of the spectrum. He is such a sweet, smart person – but people are a bit hesitate around him, because he processes things differently. I wish more people took the time to understand him and they would see how wonderful he is. Most people have never even heard of Asperger’s, though they have of autism in general. I think most are just afraid of someone who is different!

  13. “I find that those of us who are verbal are dismissed as not being able to understand, but, in the safe moment” I think you meant “in the SAME moment”? Just a heads up! Typos and such in my own writing bugs the shit out of me and I thought you’d appreciate the chance to fix it. :)

  14. The other part of this whole conversation that gets me is when those parents compare their child to me as an adult and say see “but you are much more high functioning”. Comparing a small child to an adult isn’t a realistic comparison. Its not comparing apples to apples as people say. Do they not understand that their child, like any other child, will grow up, mature and learn things along the way. When I feel like making a point I will usually ask if their child is potty trained or at what age were they trained? Too which I reply, “I wasn’t fully trained until third grade. See how much better your child is doing already.”
    I think a lot of these parents have Martyr Complex Syndrome, so I don’t think it matters what we say in the end. They will go on in their martyr complex. “Oh! whoa is me. Look at me. I have it sooo hard!”.

  15. Hi Lydia, I’m struggling in the sense that I feel that autism is not a disease and I believe that I am accepting of autism ( I blog at http://www.endautismstigma.wordpress.com) but I refer to myself as having autism, autism being a ‘more than average’ different way of thinking. I have no problem with other people referring to themselves a autistic because I understand your reasoning why and it is not offensive to me and if that is your preference then that is how I would refer to you personally. I even adopt the autistic label for myself in the comments section of blogs of people who I know prefer it. Is my reasoning offensive? Can you tell me if this post http://www.endautismstigma.wordpress/2013/12/27/you-are-more-affected-than-me/ not reflect autism acceptance?

    • Rachel, your language preference and your ideas about autism acceptance are your own. It’s not for me (or anyone else) to tell you to think this way or that, and you shouldn’t adopt an attitude to please someone else. It should come from your own understanding. Posts like the one I wrote here are not meant to command people to act or speak or write a certain way but to open their minds to certain realities. I do hope that something internal will click, but that internal change is more important than finding the “right” words.

      • It’s not so much that I want to please people, it’s just that I don’t want to offend people. FYI that blog post title is quoting from my younger cousin and discusses how I have decided that functioning labels aren’t useful as a result of what she said (don’t be afraid to read it, if that potentially holds you back- I know what it is like to be offended, it has a powerful effect on my physiology and that is why I don’t want to offend anyone).

      • I’ll try to take a look, but I can’t promise anything… I’m a full time grad student and TA, I’m working, and I’m moving this weekend after 15 months in a nursing home. I haven’t talked to my closest friends in quite a while and lacking on sleep. I tried your link earlier and it doesn’t lead anywhere, and I went to your main blog page and couldn’t find the post. Try fixing the link, and if I get a minute, I’ll try to stop back and read it. Honestly, you will not avoid offended people in this world, ever, absolutely no matter what you say or do… your better bet is to find ways to handle being offended and offended others than to try to avoid doing so in the first place!

      • Oh Lydia, you are right about me needing to find ways to handle being offended and offending others. I am sorry that I copied the link wrong and I understand that you are very busy. I have actually just decided now to stop blogging and focus on my mental health, so there is really no need for you to read it anymore. However, here it is anyway http://www.endautismstigma.wordpress.com/2013/12/27/you-are-more-affected-by-autism-than-me/
        I appreciate the time you took to respond to me. Good luck with your studies and I wish you all the best for the future.

      • Sometimes a blogging break is a much-needed thing; I took quite a while off from my blog while I focused on my health. Leave it there… you may want to come back to it! I wish you the best and I’ll let you know if I get a breather to check out your post. I’d like to, cause I might learn something :-)

  16. Incredible. This was really long and my annoying impatience from my bipolar prevented reading the entire thing and focusing on every word. I wanted to admit that. However, I loved what you wrote in the bits that I read. Particularly, this passage: Autism acceptance, at its core, means that you realize that your energies are better spent helping the child you have rather than constantly trying to shape that child into the child you think he should be, could be, or might have been.

    I think that is the same for an illness, particularly mental illness that affects your behaviour and the way you engage with the world around you. Accepting the illness means accepting its a part of who you are, and trying to live with that. It’s what I’m learning every day. Thanks for sharing.

    • It WAS long, and I am totally, 100% a-okay with skimming… I would probably skim a post like this, too! I just wanted to get all the information in one place, but the downside is the length. Thanks for reaching out, and God bless :-)

      • No problem- you are an EXCELLENT writer. I’m proud of you, particularly because you mentioned it’s hard for you to write and put words together. I would never be able to tell. Not only do you put words together, but you do it very eloquently and beautifully.

  17. Thank you. Writing is my thing. I’m a grad student… in English/creative writing! I LOVE it, and I must do it, and it is most certainly my preferred means of communication… but that doesn’t mean it’s always easy. I used to say it was like birthing beach balls when I put together a long piece, or even a short one that requires putting a very tough concept into words. It’s huge, and it feels like something massive has to come through something so small (i.e., emotions into black-and-white words)… and after you do it, it’s awesome but you’re totally exhausted and cannot go and do it again for quite some time. Slightly graphic, yes, but it works!

  18. Hi there, I myself am on the spectrum and my son is diagnosed Autistic- Highly Functioning. I feel your frustration, you’re so right about so many things. Especially that autistic people do not lack sympathy. Thankfully all these myths surrounding autism are getting slowly uncovered and people do know more an more about the condition.

    • Hey, thanks for commenting! Take a look again at the first section about functioning labels and how they hurt people… sometimes these labels ARE used in diagnosis but that is absolutely wrong. These labels are not defined anywhere in any literature, making them completely meaningless, because every person who uses them means something different! One person defines high-functioning as verbal, another as IQ over 80, and another as “well, he just is.” This renders the label completely meaningless. Even if a doctor uses it, it doesn’t make it a good practice OR helpful to actual people like me!

  19. I think “autistic” is categorization enough. We don’t categorize women as anything other than women, do we? If, by saying a child is HF, we have no idea what that means from one person’s use of the term to the next… we really don’t learn ANYTHING about the child by using that label. I usually say that one example of a better method is to give a strength, a weakness, and an interest… not much harder than throwing out “HF,” and gives the other person SO MUCH MORE helpful information about the child as a person… not a meaningless label!

  20. “Your energies are better spent trying to shape the child you have rather than trying to shape the child you might have had…”

    I think this was the most important statement you made for people with children with autism,ADHD , which my child has, or NT kids. Great post!

  21. I really like the post. I often feel like I’m the epitome of what many, if not most, parents of kids with autism want their children to become. I am the face of normalcy that people want to see in someone with autism. But the very reason that I became what I am is to show people that they don’t have to become like me. They don’t have to give up themselves in order to fit in with society. And although my actions and presence seem to be that of a normal person, my thoughts will always be that of an autistic.

  22. Lovely and informative blog Lydia. I’m not on the spectrum and I don’t have a child on the spectrum; I am friends with autistic adults and kids, and NTs. I can’t help feeling that so many of the problems – misunderstanding, miscommunication – are due to lack of confidence, lack of awareness and lack of acceptance, by both “sides”. We could be kinder to each other, and ourselves.

  23. Lydia, I am a parent of a 13 year old diagnosed with PDD-NOS, and I really appreciate your blog! I love being part of the ASD community, and like others, I find my kid rather delightful. I am sad that in spite of what a neat kid he is, he experiences so much pain regarding his peers. He’s actually quite extroverted, despite the stereotypes about autism. I think people “like” him but just won’t give him full acceptance because he’s different. I think they think he doesn’t know the difference, but he does. At 11 years old, he developed an intense friendship with a girl on the autism spectrum. I believed they loved one another in a way that is unusual for kids that age (and totally platonic). It was a beautiful thing (she has since moved away), and I think, a thing of grace, or serendipity. Do you find (for all the fear and worry we parents do) that grace plays a major role in your life too?

  24. Hi, I enjoyed this article, and it was helpful and inspiring. My son is nine and a half and non-verbal. Here in Australia he didn’t actually HAVE autism until last year, because he was PDD – NOS. So my question is – would you think of that as autism? (I think the change in the categorisation here in Australia has been so we could get access to funding, which at present goes mainly to autism.)

  25. Hi Lydia,

    I really enjoyed your post; it looks like a fantastic resource for parents of autistic children, and I think also for the wider disability community. I’m blind, and don’t want to pretend for a second that I know what it’s like to have autism, but I admire you for getting to a point of being alright with being yourself, even if some others see that as an odd choice. I guess the more people manage that , the more normal it will become.

    Seeing as you ask for suggestions on other aspects to include to make the discussion even more comprehensive, I wonder if somewhere it’d be worth talking about the actual process of accepting the (very good) advice you offer? Clearly, most of us are great at coming up with excuses for not changing, as the structure of your post demonstrates aptly. For the parents (disclaimer: I’m not a parent either), I feel like a lot of that would come down to the fear or anziety inherent in perception by self or others of not being a good parent. And I wonder if, at some level, parents may not be conscious of that, despite it being a pretty natural state. So maybe a brief discussion on them being okay with that fundamental change in outlook towards acceptance of the child as they are, and admitting that they were essentially mis-applying good intentions would be relevant? … Or maybe for another post?

    I like your writing style too by the way, I’m also an English major.:)

    Best wishes with your studies and life more generally!

    • Hey there, fellow lover of words. Thanks so much for your comment, and thank you for the suggestion for digging further into this. I really appreciate that. It’s sort of a hard thing for me to wrap my mind around, or, rather, maybe just an uncertainty that I can (or should) speak with any conviction on how parents feel, because I’m not and have never been a parent. I will keep the subject in mind, though, and reach out on Facebook and see what other parents say about it, and go from there… I think you might be onto something important!

  26. This is a wonderful blog Lydia, I live well with Early Onset Alzheimer’s with high functioning deficits in some ways similar to autism. Communication is not always easy and comfortable for me but am able to do more than people think. I belong to a group a people like me who are able to do lots, but are treated as being more dumber than we are.

    I love what you have written here about yourself and about your characteristics. It so important to shout out and say ‘hang on there, I may have some difficulties communicating but am a person with great intelligence – recognise me, not a label’.

    Brilliant.
    Gill

  27. My goodness!! As I have autism myself, I couldn’t stop reading because all of this was true and I had difficulties in the past as well. I feel like over the last few years and especially my dad has told me that I have made the biggest changes for the better and have turned into a new person. My autism will always stay with me but I do feel like anyone else in this world. Thank you so much for this inspirational piece and feel free to have a look at my blog and that includes anyone who has read this.

  28. Reblogged this on nannycheryl and commented:
    We are all born different in some way, we all struggle in different ways, JUST ACCEPT ME would it not be nice if we were all accepted for who we are, I would not like a world of robots all fitting into some nice little template, where would the diversity be The challenges we all have are shaping us into our own individual person, educating is needed for the outside world those looking from the outside in YOUR BLOG DOES THIS NICELY, but acceptance of all people (with or without their own personal challenges ) would be a nicer place, great blog

  29. Thank you for taking the time to write this wonderful post! I hope that it gains the much needed exposure that all autistics need so that next time I tell someone that my son is autistic, they understand that I do not because I need words of reassurance or pity , but because deep down I am hoping that they have read a post such as yours and would be informed enough to meet him halfway in sharing an experience , not bypass what he could offer as unaccessible . It is really important to bridge this gap which seems to get wider with every ignorant therapist or parent portraying autism in such a negative and one-dimensional light in order for anyone who doesn’t fit into this silly mould deemed the “norm” to find their place in this world, wether be it autistic or not.

  30. “Autism acceptance, at its core, means that you realize that your energies are better spent helping the child you have rather than constantly trying to shape that child into the child you think he should be, could be, or might have been.”
    I want to comment on this post as a parent of a ten year old boy who has been diagnosised with autism since age three…. WOW! and Right on!
    It’s not always easy to completely accept those that are different from ourselves or others around us but the pay off is soooo worth it because those individuals in our lives that are different often turn out to be the ones who enrich our lives the most. My son is one of those people and not just in my opinion.
    When my son was four years old I was excitedly telling a friend at church about a new technique, therapy or some such that I had read about that day when my pastor asked me if I could spare him a moment of my time. He invited me into his office and said, “Please don’t take this the wrong way but I really believe I must speak my heart. Your son isn’t broken, he’s just different. Stop making yourself crazy searching for that elusive cure or the therapy that will fix him. Help him succeed as much as he can and enjoy him. You love your child deeply and he loves you… build that relationship. The rest will come.”
    WOW! That advice was awesome and really opened my eyes. That bit of advice helped me let go of the boatload of guilt that I had been carrying around with me because my son was born different and therefore it must be my fault so I had to figure out how to fix it. That doesn’t mean that I don’t still strive all of the time to help him discover ways to be successful and happy. I am always trying to figure out ways to help him function in a world that isn’t always autism friendly. That is always our goal. But we enjoy him too. We cherish him and thank God for him. He’s bright, sweet, messy, annoying at times and is a veritable walking encyclopedia of prehistoric life. Actually, I would have take up blogging full time to discuss all of the things my dear son is… but I’d rather spend my time enjoying him.
    I am not trying to say life as an individual with autism or living with one is without its own special challenges. We certainly have those. Lots of them. Last night for instance, my son got up in the middle of the night and decided he wanted to watch TV. He was apparently having problems with the remote and threw it at the TV. You guessed it. No More TV. Am I happy about? Heck no. But… it is what it is.
    I frequently have to remind myself that his development is uneven. While he excels in some areas of his life he really struggles in others. It may always be that way. But he’s still one of my blessings.
    I enjoy reading this blog BTW. Keep it up. :-)

    • Wow–your pastor is awesome! I have heard so many stories from churches and pastors and families who seek a miracle to heal or cure a child’s autism… why would God heal what He already made perfectly in His image? I want to give your pastor a huge thank you. You, mama, keep it up, too. You and your boy!

  31. This was wonderful and brilliant and hopefully helped some people out! Thank you, thank you!
    I worked as an Education Assistant for a few years, I hope I didn’t hurt anyone by not understanding their experience well enough.

  32. Thanks for writing this. Very eye-opening. My older grandson, almost 5 years old, has autism, and I’ve learned so much in the 3 years since his diagnosis. He is a wonderful little boy (not that I’m prejudiced or anything! just a grandma!), and is learning more and more how to communicate. Loved the word picture of autism being like the flour in a cake – if you took the flour out, it sure wouldn’t be much of a cake anymore. #2 grandson, almost 2, is being assessed next week for possible autism, though he is a totally different person from his older brother. Thanks to the past 3 years, I am not worried about a possible autism diagnosis; I’m looking forward to seeing the boys grow into adults, and how each of them will change the world in his own special way. Thanks again for your blog and your candor.

    • This is so beautiful! My nephew is 13 months old, and watching my mom take to grandma-ing like a duck takes to water has been such a joy! My nephew actually cries when my mom hands him back to my sister! Your grandsons, autistic or not, are clearly blessed by your love and unconditional support.

  33. Reblogged this on Sue Kenney and commented:
    Just found this post on autism, written by one who knows. Might seem a bit long, but it’s all very good. I learned a lot from reading it, and expect to learn more as I continue to process her words and thoughts. Excellent work.

  34. Thank you!!
    I have a newly diagnosed 2 and a half year old little awesomely autistic little boy and I NEEDED to read your words…. God bless!

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