My Autism Insights

I’m feeling particularly thankful today after reading some distressing things…

First, I’m thankful to be married to a Social Worker who has a clear understanding of the DSM-IV, which is the manual of diagnostic criteria for the mental-health field.   It’s hard enough to explain what it is, let alone follow all the complicated requirements for any diagnosis.

I am thankful for not only the brief time I spent as a teache, but for the environment I taught in.  I worked with incarcerated youth, ages 12-17, and most of them were eitehr functunally illiterate or had learning disabilities.  It made the job challenging, but it also taught me how to teach outside the box.  As I struggle to advocate for Gus, it really comes in handy being able to understand the different challenges facing the teacher, and it is useful to be able to come up with little tricks to help him and those who are working with him.

Finally, and this is the really important one, I am thankful that I am fortunate enough to have both my children living with me, safe and sound.  Niksmom posted about Frankie Macias, who has been institutionalized since 1994 - on a temporary placement.  Frankie has suffered horrible abuses, has been denied access to his family, and even though a community-based placement has finally been obtained for him, the Department for Developmental Disabilitiesin New Jersey has refused to release him!

So, please sign the petition asking Governor Corzine to have Franie released so that he might have a chance at healing and living his life.

Have a great night, and please share your gratitude in a comment.

A good friend (B. you are made of awesome!) linked me to a wonderful radio program produced by American Public Media entitled Being Autistic, Being Human.  The program runs about an hour, but there’s a two-hour version of the uncut interview available on the site as well.  In this segment, Krista Tippett interviews Paul Collins and Jennifer Elder(Different Like Me: My Book of Autism Heroes; Autistic Planet), both authors and parents to Morgan, an eight-year-old boy with autism.

Many elements of this show resonated with me and mirrored much of my experience not only with Gus, but with members of both sides of our family.  Paul talks here and in his book, Not Even Wrong: Adventures in Autism, about how many ‘traits’ often run through families of individuals with autism even if those family members don’t present with full blown autism.   I actually had a laugh this morning at an incident, fairly typical for me, at my daughter’s school.

I had gone to the school book fair and gotten completely engrossed with looking at all the shelves (books = crack for me) when I realized that everyone had stopped moving.  The Pledge of Allegiance was being said over the loudspeaker and I hadn’t even heard it.  By the time I stopped to place my hand over my heart, it was almost done.  Paul speaks about this kind of single-minded focus that is common among people with autism and their families, who are often found in, “solitary professions which require deep focus and abstraction.” He had mentioned that when he gets involved in his work it is like turning his ears off. I regularly see this level of intense focus and inability to switch gears in my family, and I’m sure my mom has loads of stories of how rude I can be when I get interrupted from something I’m engaged in.

I was struck by the couple’s candidness about when they first learned of Morgan’s diagnosis.  “His normal was normal to them,” and they really didn’t have any other frame of reference, something that I blogged about just a few days before hearing this show.

Another aspect of the show that touched me was Paul’s discussion of his decision to put Morgan on medication.  This has been a topic that’s come up again and again regarding Gus, and I’m sure it hasn’t been put to rest for good.  He wrote an article about what finally helped him resign himself to the choice: The Vanishing Boy.

While it doesn’t make the edited version, during the interview the question of controversies within the autism community was addressed.  Jennifer explained that she is not of a mind to want to find a “cure” for autism.  “Before we eliminate this, what are we going to lose?” And quoting Paul’s book,

“Autists are described by others — and by themselves — as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of what is missing. … But autism … is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.”

Without the particular abilities of autism, the world might not have had any Newtons or Einsteins, Andy Kaufmans or Andy Warhols.  Hopefully, with shows like Being Autistic, Being Human,  the conversation may start to change more toward how people with the challenges and abilities of autism can be better accepted and integrated into society instead of feared and excluded.

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 went to a baby shower today.  And as we sat around watching the new mom open all the little onesies and bibs and blankies, I remembered my own pregnancy with Gus.  In particular, I remembered a game I used to play with him while he was still in the womb - the tapping game. (The tapping game was when I would tap on my belly and he would kick back - very sensitive even in utero, I guess.)  At no time during my pregnancy did I ever imagine the path we’d end up on.

I never imagined the most awesome giggle I’d ever heard.

I never imagined how cute the word ‘tur-tle’ could sound coming from the mouth of a one year old.

I never imagined how a child so affectionate at home could be so isolated at day care.

I never imagined that a two year old would know the alphabet and would be counting.

I never imagined early intervention, ABA therapy, occupational therapy, special ed classes, medication trials, or IEP meetings.

I never imagined a seven year old who could make up Pokemon riddles that are actually funny. (What does a Pokemon say when he has a cold?  Pik-achoooo!  C’mon, that’s pretty good!)

I never imagined what an awesome and fun kid I’d be blessed with.

At the shower, we were asked to give the new parents advice or words of wisdom, and I just thought of something I should have added because there seems to be so many people who worry these days about autism:

You never know what cards you’re going to be dealt, so there’s no point in worrying, but also no point in bemoaning a hand that seems less than optimal when it’s dealt.  The cards will fall where they will, and all you can do is play it to the best of your ability.  Even a difficult hand can be a winner.

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.

 photo by Ian Britton

A Carnegie Mellonstudy has shown that the difficulty that autistic people face with understanding and functioning in social situations is due to a sort of communication breakdown between the areas that comprise the Theory of Mind centers of the brain.  In layman’s terms, the messages are not getting from point A where they are received to point B where they would be processed.  The researchers used a combination of testing and magnetic imaging to see which areas of the brain were stimulated during the tests. 

Practically, what does this mean?  If the specific centers that need to have connections built up can be identified, then therapies can be tailored to individuals and can also be monitored for effectiveness. 

Mothman statue image from Point Pleasant River Museum’s gallery.  Mothman is one of Isaac Law’s favorite monsters. 

The August issue of Real Simple magazine is running an article entitled “Living with Autism.”  It’s a profile piece on the Law family of Baltimore.  Isaac Law is a fifteen years old autistic boy with a passion for monsters, or “fantastical creatures” as he calls them. 

What made this article stand out from dozens of others that I’ve read this week was its honest, yet positive depiction of autism.  Kiely, Isaac’s mom, readily tells about how she cried every day, grieving for her son, after his initial diagnosis.  But she saw, over time, that therapy has helped him a great deal.  Isaac is now in regular classes, two grade levels behind (still - huge kudos to Isaac!), with a one-to-one aide.  He’s got dreams for his future that include living independently and a career, possibly in cryptozoology or futurology or science-fiction writing. 

The Laws, in conjunction with the Kennedy Krieger Institute began IAN - the Interactive Autism Network.  This group matches families with researchers in a host of different studies, and offers information and support to families.

Kiely says, “I look back at the time before his diagnosis and think how self centered my life was.  Then when I knew what was wrong, I grieved for my own dreams.  But in some ways what Isaac and I have now is more beautiful than what I ever imagined.”

Sounds to me like her son has helped her to grow just as much as she’s helped him.  That’s pretty awesome.

 John Byrne cartoon

Co-Morbidities - what a scary word!  It sounds like some sort of mass death sentence.  For the layperson, however, co-morbidities are just multiple conditions that present at the same time.

At the seminar I attended last week, Dr. Ortiz discussed these conditions.  He distinguishes between Asperger’s and High Functioning Autism by IQ scores, but admits that the scores are usually not true representations of intelligence, but very dependent on what kind of day the child is having when tested.  What he also noticed was that the co-morbidities for Asperger’s are a little different than those for Autism.

With Asperger’s the child is more likely to present with conditions like OCD, ADHD or anxiety, to name a few.  With Autism, there is a higher likelihood of conditions like gastro-intestinal disorders or epilepsy. 

My son is borderline for ADHD in addition to his Asperger’s.  In other words, if a score of 70 qualifies him as ADHD on the DSM IV (the diagnostic tool for all these conditions, which is very outdated, but that’s a post for another day) Gus scores a 69.  The interesting thing is that sometimes it’s hard to tell with him what behaviors are caused by what condition.  He’s being medicated for ADHD because he can’t focus and tends to get out of his seat and pick up things from the teacher’s desk.  But that might have nothing to do with Asperger’s OR ADHD.  It might just be the way he learns (kinesthetically)!

Hopefully, the DSM IV will be expanded one of these days to make these conditions a bit more clear cut.  It won’t change the conditions, but it may improve public understanding of how to navigate them appropriately.  Perhaps then, society will be less inclined to just write out a scrip for things that can’t actually be medicated.

I spent the day at a fantastic lecture by Dr. John M. Ortiz, Ph.D., founder of the Asperger’s Institute , called: “52 Practical Strategies for Asperger’s Syndrome, Non-verbal Learning Disorder and Autism’. While he didn’t get to all of the strategies, he covered many, and I learned a great deal about Asperger’s that I didn’t know, things that will come in quite handy as my son quickly approaches the ‘tween and teen years but are largely applicable now.

One great thing about Dr. O’s lecture style is that he’s not dry and clinical. On the contrary, he’s a bit ADHD himself (admittedly so) and very earthy and funny. I’ve never laughed so much at this type of lecture! It was refreshing to hear his take on neurodiversity, which I didn’t find to be extreme. He views these conditions as differences (language common to the Neurodiversity movement) but recognizes that individuals on the spectrum have strengths and weakness like everyone else. Instead of focusing on the weaknesses, he takes a strength-based approach to help them cope with their challenges.

Dr. O has several books and CD’s available; he’s done a great deal of work with using music as therapy, but the books are not limited to that topic. One that I purchased is a hilarious read called My Kitty Catsberger, a very short look at how cats are the Aspies of the animal kingdom. At one point, he said during the lecture, “Cats are just autistic dogs.” For a cat person like me, that was a ‘rolling on the floor’ moment.

Some of his other works include:The Gifts of Asperger, Nurturing Your Child with Music and Asperger’s, Autism and Non-verbal Learning Disorder: Screening, Assessing and Diagnosing. I also ordered his “It’s Sleepy Time” CD for my son.

So what did I come away with at the end of the day? I’ve seen a few ways that my son’s teachers might be able to work with him more effectively (telling them in a way they’ll be receptive to, however, may be a challenge) and I’ve seen some strategies I can use at home to help make some situations a bit easier for Gus, using the things that are of value to him as a motivator. Overall, an enjoyable and informative session. I recommend checking out Dr. O’s work even if you can’t get to hear him speak.