Thursday, November 26, 2009

Holidays with Autism

Holidays with autistic children can be rough. Anyone who's taken their screaming child out of a crowded family dinner, or avoided one entirely, knows this.

For those of us who work with autism, or have a relative with the diagnosis, knowing how to help can save a holiday get-together. And if you live with a child with autism, being able to control or avoid the worrisome meltdowns will make your holidays a little more cheerful.

The first tip, of course, is to know your child. If he/she doesn't do crowds, don't force them to come along to a large gathering. Invite a few family members or friends over at a different time, or arrange child care (there are babysitters who have the skills and experience to care for your child, though they may be hard to find) so that you can enjoy your family gathering.

If your child is ok with family members but can't handle a whole evening, ensure a quiet and calming place for him/her to go. Remember not to leave your child unsupervised in a strange place (this goes for all kids, autism or no), but also remember that other family members are there to help - and if you are that other family member, don't hesitate to step in and sit with the child for a while. Parents need a break sometimes, and having a supportive family can be the best holiday gift.

Preparing a child for the holidays is also a great way to reduce meltdowns. Practice greetings and read stories (social stories or children's books) about the holiday. Discuss expected behavior with both the child and the relatives. If a child is touch sensitive, remind relatives in advance so Aunt Sarah doesn't attempt her infamous bear hug. If they enjoy certain kinds of touch, like tickling or tight squeezes, tell relatives this as well. Arriving early is a good idea. Prepare foods for your child in advance or give recipes to the cook. If your child likes new foods it's ok to introduce one or two but now is not the time to be pushing a plate of ham and peas at a child who eats only chicken nuggets.

Be sure to provide your child with something to do at the gathering, too. Many children with autism do not play by themselves and even though children seem to enjoy self-stimulating behavior (rocking, flicking, head-banging, staring, squinting, and a host of other behaviors), it may actually be a habit that they can not break and no longer enjoy. It's better to prompt them through a couple of games with lots of praise and favorite treats than to assume they are having "fun" on their own. Even a fidget toy is a better alternative than nothing.

Which brings us to gifts: sometimes, buying the right gift for a person with autism is awkward. If you're buying, ask for suggestions. Sometimes a family could use autism-related materials like special clothing, toys or sensory devices. Other times, they may just want clothing made out of materials that won't irritate the child's skin. As a relative, don't insist on buying a gift that the child can't enjoy because "it's what normal kids play with", and avoid gimmicks related to "fixing" autism - they don't work, and they're insulting. As a parent, you can make it easier by developing a list far in advance, and updating with appropriate clothing sizes and a developmental range for toys as the holidays approach. Children may not have the skills (attention span, fine motor, ability to take turns, etc) to enjoy a toy aimed at their typical peers, so choose based on a developmental level, rather than age. That's not to say you can't buy a game that the child will need to work at, but be mindful of the challenge. And be mindful too of the child's ability to open gifts - you may want to simply use gift bags, or expect adults to do the unwrapping.

Not all kids will enjoy or even manage family gatherings. Never feel guilty if you know your child can't handle the holidays the way your relatives wish he could, and do not apologize for your child. Simply work on it for next year, with small steps, including giving the relatives plenty of warning.

If you are a relative, your main goal for a happy and relaxing holiday should be to educate yourself. Don't expect a child with autism to be a perfect guest even if he is high-functioning and generally well-behaved at home. Ask the parents or caregivers about triggers - things that may set a child off. Do your best to reduce them or provide a space without them. Have parents teach you how to deal with problem behaviors, and inform other family members so that you present a united front (this is good advice anyway; kids love to play adults off each other in order to get away with bad behaviors). Make sure there is food that the child can eat, or ask the parents to provide it. Inform any children coming that the autistic child is not "stupid" or "bad", but simply learns differently, and needs more patience to play with. And remember that rule yourself.

Don't exclude a family member with autism, or his/her parents, because you think it will be a "headache" or "too much work". By doing so, you are doing more than hurting feelings. You are denying family members the ability to enjoy the holidays the same way you do, and denying yourself the opportunity to get to know your autistic relative a little better, and provide a wide support network to help him/her improve. No child can improve his or her behavior without support from adults; why neglect the child who needs the most support of all?

Friday, November 20, 2009

NJ Center for What?

NJ Think Tank "The Center for Modeling Optimal Outcomes, LLC", a primarily business-oriented group of smart guys, claims to have stumbled upon a link between a glycine-based stabilizer used in the US version of the MMR vaccine and autism spectrum disorders. Their shortened press release is so carefully worded it's like a goddamn journalistic minefield; they never actually commit to a link, and are careful to insist that this is explained in lay terms and is actually very very complicated (try me - I bet I'd understand!). The longer .pdf linked on their site explains more clearly that the proposed link is only there because someone's pulling a lot of correlations together; no research has been done that wasn't published by someone else, and some of it was shaky to begin with. I quote:

"Based on Wakefield’s* hypothesis involving the MMR vaccine as a possible factor in the cause of today’s iteration of autism (but not all of the disorders with ASD), [the company founder] decided to look carefully at the MMR vaccine as well as others.

...Since 1979 the MMR vaccine has contained hydrolyzed gelatin as a stabilizer. This fact may seem unrelated to the problem of autism unless the process of hydrolyzation is understood (i.e. concentration) and the fact that gelatin is a substance high in levels of glycine (approximately 21%).

In lay terms, the glycine is concentrated in this form of the gelatin, so presumably other kinds of gelatin have lower concentrations. Glycine seems to be related to glutamic acid (monosodium glutamate), which is a common food additive. I'm not sure exactly why the chemical makeup of glycine is thought to cause more problems than glutamate, because I'm not a biochemist; I think we can safely assume that since they are in the same family, it would make sense to investigate all of them.

Quote continues:
Is the addition of gelatin to the MMR vaccine in 1979 (US patent 4,147,722 of April 3, 1979) merely coincidental with the increase in the rate of autism soon thereafter? Has the addition of hydrolyzed gelatin to some chicken pox vaccines compounded the problem? The challenges for the medical research community are now clear! Do certain classes of cells absorb substances? If so, the entire science of toxicology will change. If the homeostasis of certain classes of cells associated with bodily functions are disrupted, could the outcome be autism[?]; i.e. the inability of some cells to absorb the critical substances necessary for the brain and
body to function normally? Can a substantial imbalance between glutamate - gelatin/glycine cause autism by slowing or stopping the ability of certain cells to absorb substances in the brain and elsewhere in the body?"

Note the bold - they're not even sure that disrupted homeostasis causes autism (or if it's even correlated, if I'm reading that right). This is yet another unfounded leap. I'm not bashing unfounded leaps - they got us things like the chicken pox vaccine and penicillin, and an uninformed outside observer sees things the educated among us may miss. Still, it's a leap of faith to trust this connection at this point - it'd be like claiming faith in the single steel wire they use to run a suspension bridge cable, before the cable or decking have been put in place. It might hold weight, but it's not well supported.

In fact, nowhere does the release state that The Center is sure of this connection or that it is a single cause of autism:
"Applying The Center’s model for homeostasis of the body’s substances uncovered a few startling facts. First, several imbalances/disruptions in bodily processes appeared to be variables that contribute to autism. It became obvious that these variables have to occur concurrently for a “perfect storm” to cause the disorder. Simply, there was no one cause behind autism."

Simply, the fact that there is no one cause means that even if the hydrolized gelatin in the MMR vaccine turns out to be one single trigger, we may spend decades searching for the next half-dozen links which cause this "perfect storm", and in the meantime, someone is going to be blowing the single link we have out of proportion. One blogger for Autism awareness has already taken it and run with the title "Vaccines Cause Autism!". Seriously? This kind of sensationalism is damaging to the community and especially to already-scared parents who are looking to blame anyone and anything they can on the sudden disappearance of the child they thought they had. Let it go, dude. Vaccines cause immunity. Some unknown inability to process the outside world and/or respond to it in reliable ways causes autism, and denying your child an immunity to a trio of very serious and very real diseases because of some shady circuitous reasoning is stupid at best and possibly inhumane.

*Wakefield's hypothesis has been relatively well trounced since it came out, and is unpopular among many autism caregivers and doctors because it has caused a hole in immunity to MMR, which opens a lot of innocent kids up to serious health risks - these diseases are not gone, folks. They're only rare in developed countries because we vaccinate. See the Wiki entry's "Recent Studies" list for more information.

Wednesday, November 18, 2009

What is the cost of living with Autism?

On my Google news feed, an article series popped up regarding Autism specialty schools in New Jersey.
This is the latest in the series, but all are linked if you're curious.

The school, named the Garden School, had to fight for state approval just to stay open, and with good reason - it costs $70-80,000 per year, per child for one-on-one ABA-based education. (For those who don't know, Applied Behavioral Analysis is the only study-proven behavioral intervention method for autism spectrum diagnoses, although half a dozen others are well recommended, and are often used in combination, especially when teachers aren't specifically trained in one method).

The article was friendly and had great pictures of the twins they followed, and the school seems to have been successful thus far but I had a shock when I got to the end. One anonymous commenter asked:

"And it costs the taxpayers exactly how much to spend a dozen years to teach one of these children to sweep a floor, or empty a garbage can, or even just to sit still for five minutes?

How many normal students could be put thru medical school for that same money?

Can't p**ss money away fast enough."

So, "blogbat999". Better question: How much does it save the taxpayers to educate these children in basic life skills now, instead of paying for lifelong (70+ years) care? Someone later mentioned that cost of education was "$864,000.00, plus transportation costs." I won't count the transportation costs, because they're a fact of life for everyone with a kid and they're built into any school's budget.

Regardless of the veracity of that number, I guarantee you 12-20 years of early intervention and ABA training will cost you far less than paying for the next 50 years of welfare, disability, and state-run group care homes. This is especially the case in states like PA where Act 62 promises to make regular insurance companies pay for wraparound services (what I do is covered under wraparound). For the money-oriented, that means that taxpayers will no longer be paying so much through MH/MR and state-sponsored insurance for these kids to get the care they need (or that more kids can get the same care as before, with less taxpayer funding per child). Instead, the private insurance companies, which are businesses which have pockets far deeper than our poor state, will pick up the slack and provide a certain amount of care. On the other hand, some families may end up with a co-pay or need to apply for Medicaid to cover the rest; we will see how well things actually work.

Run the numbers any way you like; early intervention and intensive childhood care pay off as a long term investment. This is especially true for less severe cases, where early intervention can lead to a child having a successful job and living outside the home on their own, paying taxes and bills into the system and generally being useful, instead of living with parents on disability pay or being shuffled to a group care home after their parents die - or worse, developing behaviors that can end lives . Ever heard "too little, too late"? It applies to autism very well. The less and later intensive, consistent care is given, the harder it is to change behaviors and make progress. There is no reason for any parent to suffer abuse at the hands of their child, no reason for any child to be hospitalized or jailed (and run up more bills for you loving taxpayers!) when they can be diagnosed early, treated early and improve before they get too big to control.

Note that the commenter, as usual, didn't specify what to do with the kids who are currently going to the school, either. Most of them can not be mainstreamed; they'd be put into special ed classrooms or, if they're lucky, "life skills" classrooms where they'll spend the next 12 years of their academic careers in understaffed classrooms with overworked aides and one teacher (vs the one-on-one the private school can offer), where their progress won't be tracked as cleanly, their needs won't be met as consistently and they'll often be shoved into mainstream classrooms long before they're actually ready, which will strain the special ed room even further as they push aides into the classrooms with these kids to deal with the "problems" that crop up. And do you think the schools, when faced with such an influx of children from these private institutions, will simply sit back and go "ok, we need to re-balance the budget"? In your dreams, guys. More special needs students means more school funding, which comes out of... oh, hey! Your pockets. You're paying for it either way, people.

But of course; it's all about the money NOW. Never mind that an $80,000 investment in your child's future isn't really that much when you consider we pay most sports stars more than that for 30 minutes of play time when some of them have fewer skills than the average autistic kid I work with, and you're paying THAT out of pocket too if you subscribe to cable or FIOS TV, buy tickets to the game, or pay taxes which fund new sports fields. The only difference is that taxes are money we can't choose what to do with; in this case I'd much rather my portion of the state's fat pie go toward education in all its forms than to paying for a new stadium. Wouldn't you?

P.S. I'd also like to note that I find it interesting that this person equates "normal" students with med school (see Temple Grandin, who worked herself through a Ph.D), and thinks it's a fair comparison between a chosen profession and an unasked-for diagnosis, and all the costs that come with each. Please keep in mind that you can churn out all the doctors you want, but until someone finds a "cure" for autism (and I doubt many people would accept a cure anyway), you're still going to have at least 1 in 150 citizens of the United States diagnosed with autism this year (and next, and next... and the numbers keep going up!). Chances are, someone you know already has a child, sibling, or relative with the diagnosis... and they're not getting the support they need because so many of us don't want to "waste" our money. Think about that next time you whine about your taxes. Then go vote for someone who will handle the budget properly, and get your kids the education they so very much deserve.

Friday, November 13, 2009

Watching the Clouds

Wordle: A Teacher's Blog

This is a map of as seen by Wordle. It's pretty cool. The link was found on the NaNoWriMo forums, and I'm pretty interested in how it presents blocks of text as visuals. It certainly gives you a good idea of what I blog about on a daily basis, eh? Books, school and kids all come up fairly often! Maybe I ought to toss in a political entry just to mix things up. ;)

Read Animal Farm today (finally). More thoughts on that later, if I find the time. Right now, gotta take the puppy out for play!