Autistics Should: How do I learn what autism is, anyway?

I have been on this road for about two years now. Oh, I felt there was something going on with the Monkey long before that, but the process really started moving along when he turned three, with little or no language, no interaction with other kids, odd play, unusual reactions. The process of referral, assessment, diagnosis, referral for funding, applications, and so on and so forth is ongoing, but the bulk of it was completed more than a year ago now.
So I have made an effort to learn what I need to effectively parent this boy. I love him more than I thought I could love anyone, and I want everything for him. I have talked to and read blogs and books by other parents of autistic and special needs kids. I have talked to and read experts in the fields of education, medicine, psychology and therapies. I have talked to and read the blogs and books of autistics of all ages, from the 3-5 year olds in the Monkey's classes and soccer team to a five year old novelist (yep, five and writing books, though as yet unpublished), to teenaged bloggers and students, to adults who have been through the system or have been left undiagnosed until adulthood.
I have been educated, confused, enlightened, appalled, insulted, ashamed, disturbed and frustrated with the materials that are out there. Blogs and web based information have been both my best sources and some of the most uneven and terrifying stuff I have read. There is a "flash blog" going on right now because someone checking the search engine on Google found that the auto-fill for most searches for autistics came up like this:

This was my result. I felt queasy when I saw it. What if I was a parent trying to understand my child? Or a young person or adult trying to find information on a friend or family member's condition? Or, and this is the most terrible of all, what if I were a person looking for some information or support for my own diagnosis, and this was the crap that they were given to deal with?
I know more about autism and autistics now than I knew when I started. I can look at this stuff and say "NO". Not everyone can do that so easily. It cuts to the quick because the first place people often go for information is the internet. It might not be the best place to find answers, but it is fast, anonymous and has a huge database of information and misinformation to choose from. Today I am spending some time entering some more positive searches into that bar, in the hopes that when someone types "autism" or "autistic" looking for a way to understand, they are not assaulted with hateful, negative statements.  I hope you will too. Some examples: Autistics should be respected. Autism is not an illness. Autistics are good people. Autistics are family, friends, neighbors. Autistics should be heard. Autistics should be listened to. Autistics can love. Autistics should be loved.
That's a start.

* Note: if you put the identical search too many times from the same computer too fast, Google counts it as spam, so try a bunch, and do some every day, until we can be sure of some positive results.

**Here is the masterlist of blog posts for the flashblog   http://autisticpeopleshould.blogspot.ca/p/postroll.html

Recovery from what?

I watch my son playing in his room. He has come far the last year or so, with imaginative play, language, communication, I sometimes wonder...is he really so different from the so called "normal" kids? He does stuff other kids do. Sure, he has some odd behaviours and some disturbing ones, but every one of them is something typical kids do too.
Then I remember. He is 5 years old.
If I close my eyes, pretend I don't know him, I hear a two or three year old voice, with about the right level of vocabulary for that age group. His social skills are a bit better, but he only engages in cooperative play with adults. Parallel play is as far as he goes with other kids. He is learning to take turns, but only with adults, and only with a lot of prompting.
He can't brush his teeth, dress himself, or wipe his bum. He is still in diapers most of the time because although he knows how to use the toilet, he just doesn't bother to go on his own, and actually prefers to poop in his diaper or undies.
He still smears poop, smacks himself, dumps food and cleaning products, watches Dora and Diego and Blues clues. He can't be trusted to be left alone for more than a few minutes.

Don't get me wrong, he is a great kid. He is affectionate, and he actually says I love you, Mom (okay, so it's more like "I lup you, Mumum", but I'll take it). He is bright and clever, and can get into locked rooms and mischief faster than I can keep up with.
He is behind his age in many things, but he knows his colours, shapes, numbers and most of his letters. He memorizes songs, and can repeat his favorite shows word for word.

Seeing him with typical kids is an eye opener, and reminds me that he can't be considered "normal" by any stretch. It makes me sad sometimes when on those rare occasions he tries to reach out with stuff he likes, in an attempt to play with the other kids. Like dumping gravel from the playground on his head, then on theirs. After all, if he likes it, they will too, right? I try to explain that not everyone likes what he likes. He seems to get it, but then the same thing happens the next time. Mostly he is content to play by himself. If he wants friends, he hasn't figured out how to let me know yet.
It isn't a tragedy, and he is learning. I don't expect him to be "normal", I don't even want him to be, really. I wish he understood better what the world expects of him, but that too, I can live with. I don't want to "recover" him from autism. I don't want to cure him of anything. He has a brain that works in a different way than most. I am content with that. I want him to learn as much as he can without pushing him to do things that he can't possibly manage, or even would want to. I let him try. I give him opportunities. Not being the most socially apt person myself, I do try to give him the chance to do social activities. I always fear that I am not doing enough, but that's motherhood, I suppose.
I love him. He neither needs to recover, nor is he likely to do so, no matter how much he learns to navigate the real world. It is okay. He can stay my little Monkey. He is himself. Not sick. Just different. I need to remember that.

Sing!

My son has been singing a whole lot lately. I love to hear him. He is participating at circle time at his school, and actually staying still (more or less) and singing along with the class. Amazing for my Monkey to be paying enough attention to learn the words, to follow the rhythm, and take his place in a group.
However, this development is not without, well, not drawbacks exactly, lets call them...eccentricities. The Monkey knows the words to the songs at his school, and often to the songs on the radio. In the past he got downright irate if you made a mistake, or, heavens forfend, deliberately changed a single lyric in one of the songs he had memorized.
These days, he is doing his own substitutions, and Mommy is getting a little concerned that his versions will be revealed at circle time. A few examples: (I wish I could record these, but have had no luck so far)

"the issy bissy pida cwold up the wata spout! down came Decepticons an wipe a pida out!"

"if you like it then you shoulda pu' some pants on it!"

"row row row ya boat f*ck you down the stream!"


These are generally delivered at the top of his lungs, one line, over and over and over. His favorite venue for these performances is in the tub, but he doesn't mind an impromptu concert in the car...and yeah, the words "Decepticons" , "pants", and "f*ck you" are nicely pronounced and much clearer than his usual speech. 
I applaud his creative approach. I am really happy that he is at last pronouncing his f's properly, since that has always been an issue for him. But, well, you can see there might be some repercussions over his creative choices here. I hate to stifle his artistic expression, but I think I am going to have to er, revise some of those lyrics again. Perhaps reduce his television viewing. And maybe watch my language more.

Don't ask why...

I've been thinking again (dangerous habit) about the how and why of people.
I never have really understood other people. I never felt like I fit in, like I was thinking the same things or feeling the same things in the same way they were. I was always wondering what motivated them to do things? How did that work? What made them react that way to those motivators?
Big questions without perfect answers. And then my son was diagnosed with autism.
This was not unexpected at the time, but still scary. I never felt quite like I measured up to the task of finding ways to help and nurture my son before we noticed something was different about him, let alone after we knew that he was, as they say, "wired differently".
Now, I have a few anomalies in my brain function myself. I have already mentioned that I suffer from depression and OCD (Obsessive Compulsive Disorder). I was left handed but forcibly "switched" early in my school years. I get migraines that range from mild to severe, with weird visual and mood effects that I still can't really describe. I also have PTSD (Post Traumatic Stress Disorder) from incidents of sexual abuse in my past. I have a high IQ and was identified as a gifted underachiever (i.e. smart but lazy) in school. I don't remember learning to read, because it happened sometime before I turned 3.
So I never thought of myself as normal. I always wondered if I should have kids, given that I am not the most stable person, even with the meds that keep me more or less in control. What if I had my meltdowns in front of them? What if they turned out to have inherited the same screwed up brain chemistry? What if my inherent introversion kept me from giving the attention they needed? What if they were morning people?
So now I had a kid who was "wired differently". How did I approach that? How did I nurture his talents, teach him to cope and thrive in the world? I read a lot. I researched. I was appalled and delighted by the information out there. What disturbed me was the lack of answers to the most basic stuff, and the continual search for a "cause and cure". When I was told about my Monkey's condition, WHY wasn't really on my radar. If there was a cause, it was too late to prevent or change, and if there wasn't an identifiable cause, then it was irrelevant. I needed to know how to teach my child to make his way in the world, not cure him of his difference. I still don't care why, except in the context of, no, it wasn't my fault, or my husband's fault, or vaccinations, or lack of vitamin D, or whatever the theory of the day happened to be, and thanks, I don't really need that latest article by the biomed/dietician/antivaccination/pseudoscientific snake oil salesman thanks, I'm good.
The whys that really matter are the ones that my son has the only certain answers to, and he is not currently able to communicate those to me, nor have I been able to figure them out. Why does he smear his feces on the wall, his bed, his toys, himself? Why does he dump his belongings into piles, but get made if his carefully formed lines and patterns are disrupted? Why does he have overwhelming, terrifying emotional and cognitive meltdowns? Why does he mix liquids and solids and powders of all types into great sticky slimy messes, then play with his toys in them? Why does he slam his head into things, punch himself, hurt himself deliberately? Why does he jump for hours on the couch, but not on the trampoline? Why does he eat one bite from each piece of food, then leave the rest, no matter how much he likes it? Why does he not formulate that question, why? He has never asked why something is or is not, just reacted to the concrete facts.
All of these whys are questions I ask, trying to understand what he needs to cope, to be happy, to thrive. I need to know how I can stop him from doing some of the things he does, like the smearing and the self harm, without being cruel or depriving him of ways to cope with and learn from his environment.
I have had some answers come to me from the other autism parents who have put up with my clumsy social skills and become my friends and comrades in this quest to understand. I have had epiphanies from reading the writings of adult autistics. I have come to relate my son's behaviour to the differences in brain function that have been noted, from sensory related issues, to stimming. I am moving towards an understanding that can encompass all of the things I have asked why about since we noticed all of the little things that made us seek a diagnosis in the first place.
I have been verbally and virtually shot down for asking some of these questions. I have been told that I can never understand because I am not like him. I have been advised to just let him do what he does and not ask why, and have been given the opposite advice, that I must control him at all times to keep him safe.

I am trying to navigate this maze of expectations and advice. I refuse to stop asking why, because I want to know what my amazing, unusual, autistic son needs. I know the answers will never be complete, but that isn't going to stop me asking. And maybe one day he will ask why. And maybe I will have at least a few answers for him, or a direction to point to to find out.

No safe places

I am sad.
I know that isn't a very grownup thing to say. I am not feeling like a grownup today. In my head I am nine.
I was sexually abused by my friend's older brother when I was nine. I was confused and scared and didn't know what to do. It went on for about a year, I think. I told my mom. She said not to go over there anymore. I felt like I was to blame, for going over there when I knew he would make me do nasty things.The girl, his sister was really my only friend at the time. But I couldn't go there anymore. I wasn't safe there.
My dad was a rage addict. He never hit us, just yelled and screamed and gathered us together to tell us we were ungrateful, slovenly, useless, ugly, wasteful brats, and that he was ashamed of us, and we should be ashamed of ourselves. I was bad. I was to blame. I wasn't safe there.
I found a safe place of sorts. My room was mine, I could close the door, read a book, listen to music, hide, retreat, keep my ugly, horrible self and my ugly, horrible thoughts out of the view of everyone. Then I was assaulted by a boy I thought was my friend. It was my fault for letting him be alone with me in my room. I wasn't safe there anymore. 
When I had my own apartment, I was lonely, but safe for a while. I cried and no one told me I had to stop, to get control of myself. I managed my depression and OCD by cutting myself in highschool, but with the encouragement of a friend, I found a doctor I felt I could trust, went on meds that actually worked, and started to find a safe place in her office. She didn't tell me I was wrong. She said it wasn't my fault, and I believed sometimes. Then she moved to another city, and I didn't click with the person who took over her practice. I felt angry and abandoned, and guilty and ashamed for feeling that way. I had lost my safe place again.
Later, I moved in with my boyfriend, a wonderful man who would become my husband. I didn't really have a place of my own, but I could feel safe with him. But there were things I couldn't speak of with him, things I didn't want to hurt him with, things I felt stupid saying. So I went online, and found a group of people I felt I could trust and be around and not be judged. Eventually, we formed a group that I felt safe in. It wasn't a physical place, but it was a safe place.
In the last couple of days a huge drama that was a result of a misunderstanding and led to people taking sides, attacking on their blogs, naming names and getting uglier and uglier has unfolded in my 'safe' group. It escalated into one person inviting others to attack (yes, not physically, but still an attack) and others to defend. Then got angry and defensive with the defenders. I was upset because I admire and respect both parties. I got involved, I shouldn't have, my own fault,  I got hurt by my own choices, I am to blame.
I don't feel safe there anymore. I don't think I can emotionally manage the kind of conflict that has erupted.
So I am sad. And in my head my nine year old self is crying with me. And there is really no one to blame but myself.

We matter.

Strange week. Had my first troll, and a message from a Facebook friend that made me feel the need to write this. Yeah, both of them did.
This is for the young, autistic blogger who messaged me and told me that she feels like she has no effect on the world, that her voice isn't heard.
You matter.  You are the inspiration for your peers and the kids growing up and their parents who are all affected by autism, society, and intolerance. Your effect is immeasurable, you touch even one life with your posts (and I know there are plenty more than that who have read and felt the power of your words) and there is an amazing ripple effect that is a force for positive change. You have lifted my spirits and made my journey easier. Never stop speaking, never think that your existence hasn't touched more lives than you will ever know. You matter.
This is for the belligerent jerk who told me that my opinions don't count and no-one cares about my life.
You matter. I don't know what bitterness or anger is under your words. I know you are frustrated, and I know you feel that you are ignored, dismissed and rejected. I hope that you find some kind of outlet other than trolling my blog, or others. I know that you have, perhaps inadvertently, strengthened my resolve to keep trying to reach those angry, bitter people with kind words, kind actions, and smiles when you look like you need one. I don't expect gratitude, nor do I feel that you are doing it right when you bully or belittle others. You do have an effect though. You are not being dismissed or ignored, and I hope someone will reach you, because you can be a positive influence on those around you. You matter.
This is for the kids who play soccer with my son.
You matter. Most of you are also on the spectrum, most of you are older than he is. You are so encouraging, supporting, and accepting my little guy, putting up with his distractions, laughing when he goofs around, teaching him about soccer when he is open to being taught. You also teach him that the world is a friendlier place than he might otherwise think, that being autistic is another kind of normal, that his way isn't something to be constantly suppressed or overcome, but to be celebrated and enjoyed. There are lots of people who don't make the effort, who don't get involved, who let the perceptions of other people define them. You are amazing and I hope you never get told otherwise. You matter.
This is for the kids who attend school with my son.
You matter. Some of you will never speak. Many of you will have trouble communicating with others for most of your lives. Most of you will face difficulties and challenges that "typical" kids will never even know exist. Even the most disconnected and isolated of you have changed the way I think about being human, being important, being accomplished. There is not a single individual among you who has not made me realize that every life touches every other life, and that every human being is connected to every other, no matter how they communicate. You matter.
And this is for me, for us, for the autism parents, families, friends, bloggers, artists, writers.
We matter. We are moving forward, we are trying hard, we share our successes, our failures, our heartache and our pride. We find a way to reach the people who don't get it, so that our kids, our family and friends, ourselves, have a better, more inclusive, more accepting world to live in. We matter.
We forget sometimes that every person matters. It isn't a competition to see who gets the most likes on Facebook, or who's blog is the most popular, or who says the things we are all thinking in the most eloquent way, although all of these things have their place. I often feel myself drifting into despair, fatigue, apathy, thinking, I am just another blogger, no one special, no particular reason to think I am at all important. But I am. For all the ridiculous self affirmation parodies and self depreciating lies, I am important. I affect other people's lives. I care.
I matter.