My Autism Insights

  image from Wikimedia Commons

I will preface this post by making it very clear that I do not in any way think that my son’s Asperger’s has anything to do with mercury.  So let’s be clear that I do not generally jump up and down about mercury exposure.  But today I read a blog post by High Quality Mothering about an article from yesterday’s Washington Post online about two studies that found mercury in high fructose corn syrup, which is the sweetener of choice in (disturbingly) many foods.

I had heard something about traces of mercury in HFCS a while back but could never find significant information to back it up.  Here’s what creeps me out: it’s not that there has been mercury found in a rather high number of foods containing HFCS; it’s when you take what could be a tiny amount and consider just how much HFCS gets consumed on a daily basis…that’s an awful lot of badness in food!  Isn’t the corn syrup bad enough?  I know that trace amounts of mercury have been said to be innocuous - it occurs in nature after all.  Still, if I’ve been told I have to clear a room for 15 minutes if a tiny bit of this stuff gets into the air in my house, I certainly don’t want to eat it!

I knew there was a good reason we started removing high fructose corn syrup from our diet.  This just makes me feel better about it.

What do you think: is the food industry poisoning us, or is this an over-reaction?

Or lack of policy, more accurately.

Governor Palin gave a speech in Pittsburgh today.  I’m scouring the Internet, but so far have been unable to find video of the speech, but I have found some information , including a transcript of the speech. After reading it, I still don’t see anything new or particularly substantial about her plans, and I find some of her words contradictory to her past actions.

She did mention fully funding IDEA - great, only 11 days before the election and about a year after Senator Obama mentioned his intention to do so.  She talks about school choice for students with special needs, but some states already provide at least some level of choice.  Expanding that would certainly be a nice idea, but with the spending freeze that Senator McCain called for during the debates, where is the funding coming from?  Governor Palin claims that by reallocating funds already in the budget it can be done, but she neglects to give concrete information as to how.

In a Chicago Tribune article, quoted at Autismvox , her plans apparently include boosting early childhood funding until age 3, but what is supposed to happen to those children after age 3?

A couple of other issues are distressing.  First, she claimed that the special education budget in Alaska would have been tripled by 2011, but a big chunk of that funding increase is for a program called the Alaska Youth Challenge Academy, a boot camp for dropouts with behavioral issues.  Autism, Down’s Syndrome, Cerebral Palsy, ADHD…none of these, nor a host of other special needs, are ‘behavioral issues,’ so where is the funding for those students who wouldn’t be served by being in a boot camp?  When given the opportunity to advocate for individuals with special needs in Colorado, she opposed an amendment that would raise funds for those waiting for services - about 12000 people.

Governor Palin got in a dig at the Obama campaign, and her digs have been nothing but misrepresentations and double standards up to this point, by saying that his tax plan would tax trusts that parents establish for their special needs children, which is inaccurate.  As one commenter on the CBS News blog said:

“Sure, any special needs individual who is lucky enough to have a NET EARNING of $250000 per year in INTEREST FROM TRUST FUND will be affected a bit. We are talking about trust funds well above $5.000000 here. How many kids will be affected, I wonder? I”d love to see statistics on that.

---

Posted by odnarusalka”Governor Palin fails to mention that the McCain-Palin health plan would allow insurers to deny coverage to those with pre-existing conditions.  Finally, Governor Palin spoke about the fact that children with disabilites grow up and that there needs to be support for them as adults as well.  Yet, she has yet to act on Maria Shriver’s call to Governors to employ disabled adults, and John McCain opposed the Community Choice Act, as mentioned in Becky Blitch’s blog.  So once again, the sound bites sound interesting but there doesn’t seem like there is much in the way of specifics, action, accuracy or truth where the Governor is concerned.  If this was her Hail Mary play, she seems to have just missed the goal.

Autism is all over the media these days.  I don’t think a day goes by now that someone, somewhere isn’t talking or writing about it.  It wasn’t always this way; remember when you barely even heard the word?  Yet now there are those who seem to think it’s okay to capitalize on others’ hardships (that’s always been the way, maybe), using the rise in autism awareness as an excuse to ridicule/chastise/insult…I recall the stories over the summer of kids with autism and families being treated horribly.  I remember reading the comments on Internet articles that made me wand to go around the country smacking people for their ignorance.  But it has dawned on me that they really have no clue.

These people seem to think that if you are a parent of a child with autism, you must fall into one of two categories.  If you are still at the point of anger/sadness/fear, then you must just be seeing attention? money? a foundation to send your family on a Parisian vacation?  If you’ve come to the point of acceptance where you can acknowledge the challenges of autism but can also appreciate the awesomeness of your child, then you must be - I don’t know - Pro-Autism? (Which is probably something akin to Pro-Abortion - and an equally ridiculous label.)

What it comes down to, I think, is simply that these (many) ignorant people just have no frame of reference and can’t even begin to understand autism.  You might be thinking, ‘there’s no excuse for ignorance these days.’ But, isn’t there?  Come on, we all know how accurate the Internet can be, right?

Anyway, I’ve come to realize just how easily I could have been one of those people.  Some days, life with Gus has been like a Parisian vacation: traveling around a beautiful country where I don’t speak the language.  With some guidance it can still work out all right, but without it…could be pretty awful.

Let’s look at one scenario: Take a person who had very little experience with babies and small children (like me). This person had a child and knew from the beginning that her son was very sensitive, but didn’t think much of it.  And he was awfully cute, so she just adapted and made sure everything was quiet and not upsetting to him.  Anyway, newborns weren’t supposed to sleep, right?  Mother and son grew very close and developed their own internal communication.  It didn’t seem strange that he never asked for things; he had lots of small words; he was acquiring language.  Didn’t all kids repeat those words over and over?  What else were they supposed to say?  And she knew what he wanted most times, so he didn’t have to ask.  It did seem a little odd that he rolled instead of crawled, but everyone develops in different ways, so no big deal, right?  She thought it disconcerting that when his entire daycare class was at one end of the play yard, he’d be at the other end - alone.  But then again, she often liked to be alone; maybe he was just like her.  It was all good for about eighteen months.  Then when the ‘meltdowns‘ - hitting, screaming, kicking (not great for a pregnant belly), wailing inconsolably - started, this mother found herself at a crossroads.

She could head down the path marked, ‘Bad Bratty Kid - Discipline,’ or the road marked, ‘Normal Terrible Two’s - Proceed as Usual,’ or the way marked, ‘Get Help.’

Do you see how easy it is to end up down a negative path?  With no direction, no frame of reference, or even worse, bad guidance, anyone could end up down that mean, intolerant, bad road.  I had no frame of reference, but I was fortunate to have people around me who did.  They were my compass.

Unless they are scouts, how many people always have a compass with them?

I guess my point is that I’m feeling less angry at the ignorant, intolerant people of the world who say such awful, judgmental, hurtful things about people on the autism spectrum.  I’m feeling a tiny bit more tolerant, a little more empathetic.  The behavior is not right, but more worthy than pity than a beat-down.  At least that’s where I am today.

As I was all geared up to start ranting about Dennis Leary’s disgusting comments in his new book, Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid, my husband made a point that completely defused me, “Why is anyone surprised?  He’s a twit.  He’s always been a twit.”

Well…yeah.  Can’t argue with that logic.   The offensive material:

“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

Some links to a few of my favorite blogs discussing the matter:

Autismvox , A Life Less Ordinary , Memoirs of a Chaotic Mommy , and Marla Baltes.

In fairness, here is a link to E!Online in which Leary feebly attempts to defend his words.

You know, I had gained a little respect for Leary when I watched a few episodes of Rescue Me.  I thought that maybe he’d grown up.  Apparently not - he still goes for the cheap shot and the easy target.  I may not be surprised, but I am still offended that he would call so many moms “inattentive” who are really giving their all to help their children, and that he would refer to so many awesome kids as “stupid.lazy or both,” who have to work infinitely harder to get through a day than their typically developed peers.  I mean really, how much more attentive could we be?  If I was any more attentive to Gus, the poor kid would get a hernia from lugging me around like a backpack.

I think this moron got his C’s mixed up.  A comedian is someone who makes people laugh with things that are actually funny.  A coward is a loser who would take a cheap shot at someone, turn tail, and then hide.  Don’t hide behind your lame excuses and justifications, dude.  Just admit that you were wrong, recognize that you weren’t funny, and let’s all move on - without my, or probably any autistic child’s parent’s, money in your pocket.  I prefer not to deal with people who “suck” as you so clearly do.

I think first and foremost, I’m thankful that last night was the last presidential debate.  I’ve had enough of hearing the same thing over and over, and I’m really tired of McCain’s angry sniping.  Anyway, my thankfulness:

1. I’m glad someone FINALLY talked about special needs families and that Obama came out and said he wants to fully fund IDEA.  And for all Sarah Palin’s assertions that she would fight for families with special needs, her state seems to be a bit behind the times in terms of providing support.  Also, I was a bit disturbed that McCain seemed more focused on finding a cause for autism than dealing with the present lack of support for so many individuals.  He mentioned that we shouldn’t just ‘throw more money at the problems with schools.

2. I am thankful for the existence of Roe v. Wade and more than a little offended at McCain’s characterization as people who are pro-choice as being pro-abortion.  I don’t know if there is really anyone who is pro-abortion (and if there are those folks, they are in an incredibly small minority).  I mean get real - no one wants to just go wantonly killing unborn babies.  But there have to be options available when circumstances dictate.  You cannot mandate a person’s body.  And how dare he belittle the health of a mother as a valid concern?!

3. I am thankful that Obama finally mentioned the real cost of health care in response to McCain’s $5000 refund.  That would be great if you could actually get a decent health plan for that much, but according to the National Coalition on Healthcare , the annual premium on a family plan averages around $12,000.  Quite frankly, I don’t have$7 grand to dish out so that my kids can go to the doctor, especially since one of them sees specialists several times a year.  And McCain keeps talking about competition between states - how does that help?  Does he really expect people to travel to other states for health coverage?  Our current health plan is based in another county.  Now, we have decent coverage, but most of the doctors inthe network plan are in the county where the plan is based.  We can go out of network, but the cost is prohibitive.  So, that means I have to travel an hour to go to the doctor.  Guess what - I don’t go to the doctor very often.  My primary doctor is now relatively local, but my husband’s is not.  So when he injured himself and couldn’t drive an hour, that was a problem.  Now, that’s within the same state.  How are people supposed to manage that if they have to travel out of state to receive certain benefits?  And if anyone thinks insurance agencies won’t do that, please guess again.  As it is, we’re traveling an hour to see Gus’s specialist (Pediatric Developmental Specialist) because we, in 2.5 years of living here, haven’t found a local specialist who takes our plan.

4. I am thankful that the debate was not more eventful than it was because I wasn’t tempted to stay up afterward.  I got a decent night’s sleep for a change!  And now that Gus is feeling better, he slept to a good time this morning too, which hopefully means a good day for him.

I hope my views haven’t offended anyone, and I’d love for you to comment withyour own gratitude!  Look at the bright side, in just over 2 weeks, you probably won’t have to read any more about politics from this mom.  Have a great Thursday!

We took the kids for flu shots this morning.  I tend to not comment much on the vaccine/anti-vaccine debate within the autism community because it’s no longer an issue for me.  Vaccines did not make my son autistic.  Period.  So we vaccinate our kids and they get flu shots every year, as do we. Not that it should really matter since it’s been shown that mercury does not cause autism, but our pediatrician only uses mercury free vaccines in case anyone decides to question my parental judgement.

Anyway, this morning’s shots were particularly funny.  MM went first, and I have to say she is one of the strongest kids - and I mean her character as well as physically - that I have ever come across.  She had to get blood drawn yesterday and then get poked again first thing this morning.  She didn’t even flinch.  She said, “ouch.” That was it.  No crying, no drama.  I told her she rocks, because she really does.

Then it was Gus’s turn.  Now, he’s been pleading not to get the shot since last night.  When his turn came around, he told the nurse, “Can’t we wait until flu season?”

“It is flu season.”

“Wait, I have to go.  I forgot something.”  The funniest thing to come out of his mouth was, “I have to go!  I have a job!  I’m very busy!”

Even amid all the wrestling we had to do to keep him in the room, that one cracked me up.

As he gets older, he’s obviously getting stronger, but that gets lost on me until I actually have to keep a grip on his wriggling little form.  Wow, that kid is skinny as a french cut string bean, but he is strong!  And of course, the struggling at that point had more to do with not wanting to be restrained and less to do with the shot.  As a matter of fact, he didn’t even flinch when he finally got the shot, almost didn’t even notice.  And then, completely deadpan, “I was very brave.”

Yes you were, dude.  You certainly were.

Remember to get your flu shot, and check back tomorrow to find out about Gus’s first soccer game!

image from ALA website

Every year during the last week of September, the American Library Association celebrates Banned Books Week.  We all have the right to choose what we read, and I certainly want my son to have that freedom as his reading skills develop.

Books are challenged - proposed for banning - for several reasons, but some of the most common have to do with content that could be construed as offensive.  I find this ridiculous.  The world is an imperfect place, and there are things in it that are less than pretty.  There is violence and sex (which is not in itself something I would consider problematic) and foul language interspersed among the more beautiful aspects of human existence.  While I may shield my children from some of these things, at some point, they should be exposed to them.  They should be able to ask questions and look at those things critically.

Gus is an avid reader.  Gus will probably have to deal with ugliness in his lifetime: discrimination, possibly bullying, heck, as much as I don’t want to think about it, sex will be an issue at some point.  Should I put him in a bubble so that when he is confronted with confusing situations he’s completely shocked by them?  Or should I let him experience them in a safer way when we can then deconstruct them together?

For kids on the spectrum, things like social stories have been regularly used to illustrate behavior in a wide range of social situations.  This shows that reading and processing that information can be helpful in helping them understand how the world works before being confronted by situations.  I think for many kids, on and off the autism spectrum, some of the books, classics of literature, that have been consistently challenged can offer great value.

The Junie B. Jones series is #74 on the list of the Top 100 Challenged Books of this Century .  I think we’ll break out Boo! And I Mean It and re-read it this week in celebration of the freedom to read.

I read about this yesterday: ADAPT , an advocacy organization working to get better support for people with disabilities to have better housing instead of being relegated to institutions or nursing homes, had an interesting experience with the presidential nominees’ campaigns.

ADAPT took a delegation to Washington in order to meet with HUD (Housing and Urban Development), the Obama campaign, and the McCain campaign.  These meetings occurred separately.  In a nutshell, HUD was unable to help and politely communicated as such, the Obama campaign people listened respectfully.  The McCain campaign, well, they were not quite so nice.  They had more than 15 ADAPT members arrested because of their non-violent protest.

So just to be clear, there was a group of about 100 people peacefully protesting for better living conditions for people with special needs.  And the McCain campaign not only refused to even accept materials for proposals, but had the  protesters arrested.  Oh, and there was at least one injury as a result.  This is the same campaign that Sarah Palin became part of when she pledged her friendship to families of people with special needs.  I guess the same pledge doesn’t include the actual PEOPLE with said special needs.

Yep, thanks, Sarah.  You’re a real pal.

    AP Photo by Susan Walsh

I’m not going to turn this into a political blog, but for days now I’ve had something nagging at me, which means the words want to come out.  I will caveat my statements by pointing out that I’m a Democrat and wouldn’t vote for the Republican ticket no matter what.  I am, however, paying attention because if this team happens to win and they are running the country, I’ll be effected as much as the next guy.  And so will my son.  The one with the special needs.

In her convention speech, Governor Palin said, “To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters.

I pledge to you that if we are elected, you will have a friend and advocate in the White House.”

I don’t know about that.

I’m not interested in the fact that she’s got a teenage daughter who’s pregnant.  It happens.  I do find it interesting that she wants her daughter’s choice to have this baby to be left alone, and it should be.  I find it commendable and wonderful that Governor Palin chose to have her youngest son knowing that he’d have Down’s Syndrome.  I find it disturbing that while it seems the Palins should be allowed their choices, the rest of the country, including those who do not have the same resources and support that this family does, should be denied a choice.  But I digress…

I am also very skeptical of her vow to be a friend to families of special needs children.  “Oh, but she’s a parent of a child with special needs,” you might say.  So?  Here’s what I don’t get: She went back to work three days after her son was born.  Now maybe it’s not so taxing to run the state of Alaska while still providing children, one with special needs, with all the care they require and deserve.  I’m sure she’s excellent at multi-tasking.  But Alaska isn’t the White House.  Something, in my opinion, would have to give.  Clearly, her career is her priority, and that’s just fine - to each their own.

When Gus was born, I had a career that I loved, and it was taking off nicely.  Even before his diagnosis, I decided that I wanted him (and later my daughter) to be my priority.  So I let one career go and have developed another.  My kids came first.  Now, I’m not saying everyone should have to do the same - I believe in choice - but if the governor’s children, her new baby in particular, aren’t her priority and focus, how can I expect that my child would be any more important to her?

I know plenty of moms with special-needs children who work, by the way.  I think most of the ones I know have either made some adjustments to their careers to be more available for their child (like I did) or would jump at the chance if they could.  It’s not just being at home playing with the child; there is a whole realm of advocacy and constantly being on top of what’s going on in the child’s life that just can’t be done if you’re doing something like running a country. I’m not being anti-feminist, just realistic.

There are other issues I have with Governor Palin that I won’t address here because it’s not the place for them.  I just really wish that the people of this country would look past all the rhetoric and glitz of all these candidates with a critical eye, analyzing not only what they say in their carefully orchestrated speeches but what they do.  Forget what all the news stations are prattling about - stop for a minute and think about what we’re being shown.  Am I way off base on Palin?  I don’t think I am, but I could be wrong.  What are your thoughts?

Chris at A Free Man has written one of the few posts that you should definitely read!) about the causes behind autism that balances technical information with plain English. I usually have a hard time digesting scientific information - it makes my eyes blur and my brain shuts down, but this is an excellent and informative post, easily understood.

The bottom line:

“Most evidence supports that genetics plays the dominant role, but if in fact the frequency of autism is rising, then there are very likely some compounds in our environment that play a role.”

This seems to suggest something important to me. Things like vaccines and diet, since they are environmental, they may help to mitigate autism, but I don’t see how they can erase it. The conclusions presented by Chris have pretty far-reaching implications for the entire biomedical movement, too. Lots to consider in terms of finally moving forward with trying to work with those children and adults who have been diagnosed. Maybe now more energy can be spent looking at that instead of just at causes.