Autism Non-Awareness, Human Acceptance

Today is World Autism Awareness/Acceptance Day.

Last night, as I spent time with Janey as she went to sleep, I thought about this day a lot.  I thought about it, as people most often think about things, from a very personal viewpoint---that of Janey, and how best to help her through the world.  And I realized, in a lot of ways, helping Janey be accepted, in a full way, involves something that is the opposite of autism awareness.

Taking a step back, I'm thinking of my own view of politics, or really, the larger world.  For the most part, I completely ignore politics.  When I don't, I become easily overwhelmed.  There are so many aspects to it, so many personalities and philosophies and emotions and ideas.  And I can affect all of it very, very little.  I vote, and then I probably actually bury my head in the sand.  I do so not out of apathy, but because I know what I can do and I can't do.  I can't change the world, not in my current life.  But I can do the best I can for my own family, and so I look inward.  I try my hardest to be the best mother I can, to have the best marriage I can.  I don't succeed, of course, but I try.

The wider world of autism is in many ways like politics.  It's a huge world, and a huge spectrum.  Sometimes I try to look at it all, and take it all in, and I am overwhelmed.  As I sometimes see little of my own life in political life, I sometimes see little of Janey's life in my views of the wider spectrum.

And sometimes, trying to think about autism as a whole keeps me from focusing on Janey.  I start to feel paralyzed, in writing here and in making decisions for her.  When I look at the media for views of autism, I see little that seems anything like Janey.  The spectrum is so wide that there is almost no intersection between lives like that of The Good Doctor or Temple Grandin and that of Janey.  And I say that not talking about high or low functioning.  I am talking about personality, strengths, interests.  Janey is not part of a group.  She is herself.

What I have found, over the years, is that people who most accept Janey are people who most know Janey, as a person.  In a big way, that includes us, her close family.  I don't look at Janey thinking about autism, 99% of the time.  I look at Janey as my daughter.  Like every other person on earth, she is a mixture of many things.  At times, she is a delight beyond imagining.  At times, she drives me out of my mind.  I can say exactly the same things about her brothers.  Her autism doesn't make her who she is, any more than Freddy's asthma did or William's premature birth did.  It has affected her life, sure, very much so, but it's not the essential Janey-ness of her.

I've had on occasion over the years a telling reaction from people meeting Janey for the first time that knew ahead of time she was autistic.  It's a surprised reaction, followed by them saying "But she's so beautiful!" or "But she is so happy!".  Or, a few times, "But she's, well....(and here they don't use the forbidden terms but say in their own way that she's intellectually disabled)"  These people were, before meeting Janey, what they considered aware of autism.  They had awareness that led them to believe Janey would somehow look different than the norm.  They are surprised when they see a lovely, happy girl.  Then they are surprised she doesn't talk like a doctor or a PhD, that she isn't quoting train statistics or holding court on some focused high level math concepts.  Autism awareness has failed them.

To accept Janey fully, to accept all of our girls fully, and in fact everyone fully, we need to see them with non-pre-aware eyes.  We need to see them as they are.  Janey isn't an example of anything.  Janey is a person.  Like everyone, she has some special needs, in the most literal sense of that word, and her particular special needs are ones that society doesn't readily provide, so we need to help her more than we would others.  But if we look at her with fresh eyes, those not pre-filtered with autism awareness, we see her---a 14 year old girl, one who loves music, loves car rides, loves dancing, loves running around in fresh air.  One who doesn't communicate verbally very effectively, one who needs help with many life skills, one for whom academic skills are at a very low level.  One who delights those around her with her enthusiasm for life, one who is the most adventurous eater I know, one who last night hugged me tight and said "Love you!"

Without the filter of "awareness", without the filter of autism, Happy Acceptance Day!

Why We Don't and Why We Should

Reasons why we, the parents of children with low-functioning autism, don't write or talk as often as we might about how tough our lives can be....

Because we don't want to hurt those who share the "autism" part of the diagnosis but not the "low-functioning" part.

Because we know it's natural for people to only have a limited capacity to hear about how hard things can be before they get tired of hearing it.

Because we are too tired to talk about anything.

Because we know it's more politically correct to emphasize the positive.

Because sometimes we are so used to it that it doesn't seem newsworthy.

Because the other people living this life already know how it is, and we think people not living the life generally will never quite get it anyway.

Because we think if we don't put the worst of it into words, it won't quite be as true.

Because we have been taught there is no point in complaining about things that can't be changed.

Because we don't want to hear about "solutions" that don't exist or don't work.

Because we are tired of hearing about all that Temple Grandin's mother did.

Because we feel secretly like we should be doing a better job, and if we were, it wouldn't be so hard.

Because we love our kids so much that it's hard to believe, and admitting how hard our lives are with those same kids feels wrong.

Reasons why we should break the silence and talk and write and shout about it...

Because otherwise, the world assumes autism means Temple Grandin and math geniuses and slightly quirky girls who don't get diagnosed until high school because it's so hard to tell they are actually autistic.

Because maybe, just maybe, if people knew the truth, they would want some of their tax dollars to go toward helping us.

Because when our kids melt down in public, it would help if people didn't assume we were bad parents or they were bad kids.

Because most people could handle the truth.

Because our kids deserve to be written about, to be seen, to be known, as much as all the other kids on earth.

Because of books like the one I read about girls with autism with the line I will never forget "Girls with autism have a very bright future", and the chapter of advice about when our girls get to college.

Because not talking about something means it's an unspeakable tragedy, and our kids' lives are not an unspeakable tragedy.

Because the school system needs to figure out what to do with kids who have had many years of academics and have not learned anything academic.

Because we love our kids so much that we can tell the truth about how our lives truly are in a way that still lets that love shine through.

Because try as we might not to, someday we parents are going to die, and that is the scariest part of all, and it might be less scary if society actually knew our kids, our kids who will someday be adults and will need help that does not yet exist.

Accepting Autism Acceptance

Tomorrow is Autism Acceptance Day.  You might know it as Autism Awareness Day, but like a lot of others, I have chosen to change the name.  I think most of us are aware of autism by this point.  The next step is acceptance, and that is a step not only for the general public for but many of us personally.  Or at least it is for me.

I struggled for a long time with the idea of autism acceptance. My reasons were many, but there were lots of times I heard that term and said to myself "Never!  Accept autism?  That's not going to happen!"  I always told myself it had nothing to do with accepting JANEY, it has to do with accepting her autism.  However, I think I'm finally there.  I've figured out what autism acceptance means to me.

Autism acceptance doesn't mean liking the tough parts of autism, or NOT liking the great parts.

When Janey bites herself or others, or when she cries for hours on end for reasons we don't understand, acceptance doesn't mean not trying to help her to feel better and stop hurting herself or others.  It DOES mean accepting that those behaviors are part of how autism affects her.  It means not denying the parts of autism that are so tough, not writing them out of the story to make autism more palatable.

When Janey is delightful, amazing, hilarious, autism acceptance doesn't mean that I can't enjoy the positive effects of autism.  I don't have to say "Janey is wonderful DESPITE her autism".  I can say "Janey is wonderful partly BECAUSE of her autism"  That's a tough one for most people to take, somehow.  But when Janey recites dialogue amazingly well, when she learns songs instantly and sings them so well, when she snuggles us without the typical pre-teen reserve---I accept that those behaviors are part of her autism, and I love them.

Autism acceptance applies to ALL parts of the spectrum.

This year, when the press decides to showcase people with autism, I wish for every Temple Grandin, for every child that has written a book or learned to type and give us all insights into their world, they would also showcase a child on the lower end of the spectrum, like Janey.  I don't accept Janey conditionally, and I dream of a world that doesn't accept people with autism because they have or might someday do something amazing.  Janey and and the children of my friends around the world with a child with low-functioning autism deserve to be accepted and to have their lives made as meaningful and joyful as possible.

Autism acceptance also applies to acceptance of a family's choices

It is very hard to see how fragmented and politically correct and potentially trigger-filled the world of autism is.  Part of what I think we all need to accept is that we've all made different choices in how we deal with the autism.  Some people embrace ABA.  Others do Floortime.  Others have put their children on special diets.  Some use vitamin supplements.  Some use medication.  Some homeschool.  Some have children in residential placements.  There are an amazing number of ways to educate and medicate and provide therapy to children with autism.  We might feel strongly our way is the best, but we need to accept another family might not feel that way, and as long as we all have the goal of helping our child live a happier and healthier life, these issues should not divide us.

I will close with a video a lot of you have already seen, as I put it on my Facebook page.  It's Janey surprising me with a different message than the one I asked her to give---I asked her to say "Happy Autism Acceptance Day!" but her Boston and 1/8th Irish got the better of her!  She also says in the video "I have autism"  I love her sweet voice as she says that.  I used to avoid using the word "autism" around her, but I have decided that's not at all what I should do.  I accept Janey's autism as part of the amazing little girl she is.  I love you, Janey.

Here's the video!

My own personal autism awareness wish list

Here it is, World Autism Awareness Day again.  I've been saying to myself what I say to myself every year on this date---I think I'm about as aware of autism as I can get.  However, I've been thinking about what I'd like others to know about autism.  Here's a list of the top four things I'd like the world in general to know.  It's my own personal list---I am sure that everyone with a life touched by autism has their own list, different in many ways, but I can only speak for myself.

Most autism you see portrayed in the media is high-functioning autism.

There is a huge, huge range of abilities and characteristics all lumped together as "autism".  In the past, there was actually a separate name for the highest end of autism, Aspergers Syndrome.  But the powers that be, for whatever reason, have now lumped that in with all the rest.  If you see Temple Grandin, or hear about Daryl Hannah, or even see the often hilarious Autistic Reporter on The Onion, you are seeing very, very high functioning autism.  On the other end, there are children and adults like Janey.  Janey is nine.  She is not toilet trained.  She cannot be left unsupervised for a minute.  She can talk a little, but mostly only in scripted "I want.." sentences or in repeated phrases from videos.  She screams, cries, injures herself and doesn't sleep regularly.  Academically, she functions about at a 2 year old level.  She is autism, as much as people with college degrees can be autism.

I am not looking for a cause of autism or a cure for autism.

There are many, many possible causes of autism.  Janey's autism could have been caused by any number of them.  In our daily life, it doesn't much matter what caused her to be autistic.  And in Janey's particular case, there is not going to be a cure.  I am not sure there ever is a cure for correctly diagnosed autism, but many disagree with me there, and that's fine.  However, I don't choose to pursue a cure for Janey.

Autism affects family life extremely severely.

If you've ever spent even an hour with a child with autism, especially low-functioning autism, you were probably exhausted after that hour.  Imagine that you have that child living in your house, every day, every night.  Imagine that you can never, ever count on a full night's sleep, that at any moment, your child might start screaming or crying or biting themselves or trying to bite you, and that there seems to be no reason for this behavior and no way to soothe them.  Imagine that you can never, ever count on going out in public as a family and having it go smoothly.  Imagine that even close friends who would do anything to help you have admitted they can't watch Janey, even for a few hours.  Imagine that you must sometimes make choices like whether to listen to a sibling tell you about their tough day or follow the rituals the autistic child demands, and if you pick the sibling, you know you'll be dealing with hours of screaming.  Imagine a life that autism touches every single second, every single aspect of.  That is family life with our particular brand of autism.

I love Janey more than I can possibly describe, and that guides all my decisions about her.

It is the most important thing in the world to me that Janey be loved, cared for and valued.  I make every decision about her life with that in mind.  For example, I am not sending her to summer school this year, because I am not comfortable with the program.  I need respite, but more than that, I need to know Janey is safe and loved, just as any parent has that need for their child.  In Janey's case, since she can't usefully tell me what happens when I'm not with her, I have to be ever-vigilant about who is caring for her when I am not there.  At this point, I can't compromise on this---I can't accept less when letting her out of my sight.  Maybe that is my biggest point.  There needs to be quality education, care and respite for children with autism, because they deserve it every bit as much as any child.  Without that, the burden on many families is near unbearable.

To all my friends, to all my readers, to everyone who has helped me through this life, and especially to Janey----Happy Autism Awareness Day!

NOT Thinking In Pictures

I read an article in list form yesterday that kind of got me going, one of those "10 things you should know about autistic kids" type things. It was overall pretty well done, but more than twice, it stressed how you have to keep in mind that autistic kids are visual learners. Lately, it seems like I hear that constantly. I'm sure a lot of it comes from Temple Grandin and the whole "Thinking in Pictures". But NOT all kids with autism are visual learners or thinkers. I'm not inside Janey's mind, but I feel very confident in saying she is HEAVILY an auditory thinker and learner.

I base this on several things. One is that typical visual cues for kids with autism just don't work for her. Her teachers and therapists have noticed this too. I have never seen her show the slightest interest in a picture schedule, she has no interest in that picture kind of writing that is often used for kids with special needs, she is not interested in looking through books of pictures---none of that. On the other hand, she is and always has been EXTREMELY oriented to auditory things. This is shown in her fairly extreme echolalia, and her sensitivity to sounds (the "cracking noise") and her love of music. She is actually getting pretty good at following verbal directions, and she is highly tuned into the sounds of talking---if someone sounds angry or happy or annoyed.

In most books I've read about autism, there is a slight mention that a few kids with autism are auditory learners, but I think it's not too common. I think it's both an asset to Janey and a detriment to her learning. It's a detriment because so much of what is developed for kids with autism assumes they will learn visually. I can't see her using a icon kind of speech system, or PECS exchange pictures (that has been tried over and over with her, and everyone agrees it's kind of a bust, as she just likes to crumple the cards, I think to hear the velcro sound!) It's also hurting her ability to learn to know letters, or to someday read. I don't think her mind is set up to recognize shapes or letters very well. However, it's a asset because I think she can talk more than most kids with her level of involvement can. In most ways, from what I can gather, she'd be considered fairly on the low end of the autism spectrum. She has a great deal of trouble learning, she doesn't understand basic concepts like birthdays or "tomorrow", I would no more expect her to answer a question like "What do you do with soap?" than fly to the moon (I saw that question as an early one to teach kids in a book), I am not really sure she understands what family members are...but she talks. She asks for what she wants, she recites all kinds of lines, she even is starting just a little to play around with words. Last night she sang my husband a short parody of "You Are My Sunshine"----"You are my Daddy, my only Daddy..." I can say things like "bring me the phone" or even two step things like "close the fridge and bring me a cup" and if she's in the mood, she does it.

I can understand why most information and teaching is aimed at visual autistic kids. They are certainly the majority. But I think a little of it is that when high-functioning autistic people tell how they think, and they are visual learners, it's pretty hard for them to picture that other autistic people might not be. That's part of autism, after all---it's hard to see things from other people's perspectives. I can't tell you how many people have said that they understand autism a lot more after reading Temple Grandin. And although I admire her greatly, I don't think Janey is anything like her in terms of learning style.

As the blog is called---rarer in girls. And Janey gets another rare attribute in her auditory nature. Oh, well. Nothing like being unique---isn't that what I used to think?