Dealing with autism is tough. It's more and more common, though, so more and more people are having to deal with it. But, in a silver lining, there are now many groups around, from national to local, that are there to help. If you want or need to learn more, here are five sites to check out, also from national to local:
Autism Speaks http://www.autismspeaks.org/ - A national group that in addition to advocacy also funds science and research.
Autism Society http://www.autism-society.org/ - A national group mainly interested in advocacy.
Autism Society of Alabama http://www.autism-alabama.org/about-us.html - A statewide group, affilated with the Autism Society. Holds walks in the state, has advocated for autism legislation in Montgomery.
Alabama Autism & Asperger's Statewide Info and Support Network http://www.alabamaautism.org/ - A statewide support group, started by a dad with two children on the spectrum. We are good friends with the founder, Mr. Tumlin, and can say he has does wonderful work setting up a group where people can ask questions and get help - he has recently added a shortcut for a special ed. attorney, which is greatly important. He has also been involved in advocacy, ferrying parents to Montgomery for autism legislation.
Calhoun County Alabama Autism Information Website http://www.calhouncountyautisminfo.com/ - This is my wife's website, set up mainly for local support but affilated with the Autism Society of Alabama. When Xan was diagnosed, we had to find out so many things on our own that she resolved to help others start out better. If you remember the Walk for Autism at Zinn Park back in April, that was her walk. She's also arranged some speakers to come down and a autism-friendly trip to the planetarium. On her site is links to local dentists, speech therapists and much more, a link to online support/networking groups and a daily twitter feed with autism news.
I hope these help.
The symbol of many autism awareness groups is a multicolored puzzle with a piece missing. I'm sure you've seen car magnets like that a lot more often than you used to, automotive symbols of how fast autism has exploded and how many people are dealing with it, so you know what I'm talking about. There are several reasons for the symbol, from 'solving the puzzle of autism' to 'every person with autism is different' to 'the mystery of what causes it'. It may have as many meanings as autism has different effects.
But I see another facet.
Xander likes some things in their wholeness - give him a Bear in the Big Blue House show, or Zoboomafoo, and he'll watch it from beginning to end. (I use 'watch' loosely, since jumping up and down and running back and forth is his usual TV viewing positions. He may be the rare person who loses weight when the TV's on.) But others? He'll only watch parts of them. He has clear favorites - opening themes and closing credits of most shows, but the middle he doesn't care about. I've noticed if given his choice on music, he will do the same - not just particular songs on a CD, but only up to a certain part of it, then he asks for another song, which will again go to a part and then stop. Books as well - certain parts he loves and will open to that point time and again. Rest of it? Take it or leave it.
(I once saw a list of 'things you never knew until your kid had autism' and one of them was how much fun credits are, so his love of them doesn't seem unique. It may just be the up and down scrolling on the screen that so interesting; Xan also loves to watch me play Guitar Hero. As to why it's so doggone funny, who knows? Because it's different, vertical moving inside of horizontal fixed?)
Speaking outside my experience, this seems to fit in other autistic conditions. For example, many Asperger's people tend to fixate on one particular thing, like trains or art or dinosaurs, and learn about it everything they can. And as I said in another posting, the single-minded focus on one thing - one piece, if you will - on the playground or in the classroom is quite common.
Maybe this love of certain pieces of a whole fits in with the sensory issues - certain parts sound, or look, better. Like us having a favorite part of a book or movie or song, but in his case it's not just liking it more, but having it fit in more, make more sense, feel better. As evidence of this, the parts Xander does like, he can take loud. When it's a scene he likes - the final space and land battle in Serenity, or the Green Dragon fight in How To Train Your Dragon - no matter how loud it gets, all-the-way-up-things-vibrating-off-the-shelves-loud, he'll jump and laugh and run back and forth and stay in the room to watch it. Other parts, he covers his ears and leaves.
I wish I could say there was something in common with what he likes, but none that I can tell. High-pitched lasers; deep explosions; plinkly banjo music; a crunchy guitar chorus; 'they must not get our apples down/come on come on get out of town!' (Ten Apples Up On Top by Dr. Seuss, for those of you past the Dr. Seuss stage); an end page picture of...well, nothing really. Random pieces here and there of sounds and sight that fit into his senses better than the rest of the world.
A fitting puzzle piece that's a puzzle in itself.
Autism - from the Greek word autos, meaning self.
One of the more isolating facts of autism is the desire and preference to be left alone and do their own thing. Whether this means only doing one thing on a playground (like swinging), or sitting alone in a corner organizing their blocks, or a rather more forceful refusal to stop something and start something else, it's a simple and evident wish to do their own thing. It's almost admirable, in its way - a single minded stubbornness of purpose, of knowing what they want and refusing to do anything else, even as it sets them apart from everyone else. The debatable benefit is not knowing, or perhaps not caring, about how this sets them apart. I prefer to think it's not knowing.
(I only speak from our experience. I would guess that families who have members with Asperger's Syndrome would probably argue there's nothing better about what they go through - being more able to blend in 'normal' society also makes the differences more evident and painful to know. So no insult is meant, nor any attempt to say condition A is better than B. Every one is their own special balance.)
But their solitude has an effect on their family. I can count on both hands how often we've left Xan with anyone else outside of school in his nearly ten years. I can count on one hand how many times he's been to a movie. I don't need any digits at all to figure how often he's been away from us at night, or been at a friend's house, or been outside without one of us outside as well watching him. His aloneless has driven us to be separate from others. Some of it is simple defense - we know the warning signs, the verbal shorthand, what he can eat, what he likes on TV. Some of it is exhaustion - it's much easier to have a full and frank exchange of views - or, as it seen by others, an argument over what he'll do or how he'll act - when it's behind closed doors. Some of it is protection - by limiting the contact, we limit the dangers.
In addition to the forced isolation, every family has different issues with their situation. Xander's diet has expanded a lot - some families have kids who can literally eat one or two things. Xander can handle going out of the house at the spur of the moment - some kids have to have a minute by minute day mapped out to get through it. On the other side of the coin, Xan doesn't talk, which is a whole universe of problems. Taking him to the doctor or the dentist can be a wrestling match. These issues may be unknown to others, or to a greater or lesser extent. So even among our little community of families affected by autism, we have all separate stories and problems.
But, to end this on a happier note, we are also alone in our triumphs. A few weeks ago, Xan spontaneously told mommy "I love you." We know he does (at least with mommy, who is a clear favorite. It goes Mommy, cats, teachers, classmates, a couple of stuffed animals and THEN daddy, and that's on a good day). He shows it a lot - holding out his hand for a kiss, coming up and trying to tickle her, or demanding her attention to play with him - but this was the first time he told her without any cueing or repeating. That may be too little or too much for some other family, but they can tell of other moments of happiness that we wouldn't know of that made them ecstatic.
Every trouble and triumph is unique in itself.
Xan likes swimming, and swinging, and jumping in bouncy houses. We've got one of those exercise balls and he'll fling himself at it to bounce up and down on the edge of balance between control and the emergency room. He loves to grab your hands and spin you both around in a whirling circle until you're about to fall down or throw up - and then he'll leap in the air for some extra centripetal oomph. After only a few broken furniture pieces and almost broken bones, he has decided doing this in cramped places (such as the living room) isn't the best idea. (...usually, but it pays to be on your guard.)
What do all of these have in common?
Xan used to take physical therapy in Birmingham. We stopped when he really started resisting it, since driving an hour to fight for forty-five minutes seemed like a bit of a waste - we could save a drive and be yelled at here just as easily. One of the times we went, his therapist showed us some calming tricks that involved locking a joint, knee or elbow, and gently thrusting down on the foot/hand. I'm probably missing some critical step here, so don't try this at home unless some therapist shows you the trick.
The therapist explained that many autistic kids have, for lack of a better term, a strangeness of their own bodies - feeling out of place in their own skin. Could be that sensory overload again, could just be a mental disconnect that's an offshoot or a result of the differences in their brains, may be an aftereffect of everything else they go through. We don't know yet. But doing that joint-lock/soft thrusting helps them recenter, feel better. A kind of reset button. If you've seen an autistic child hit themselves lightly with a hard object on a joint (Xan likes books and elbows), that may be doing the same thing - a contact that helps realign them.
What does jumping in bouncy houses, being whirled in the air, swimming and swinging have in common?
Every one has that fleeting second or two of ... disconnect. Free of gravity, of weight, of contact, of everyday being. Maybe those blinks of freedom help them get away from what they have to go through all the time.
For a few pauses, they are free of their everyday heavy weight.