My Autism Insights

Recently, Mia from General Hysteria guest posted for us, and now we would like to reciprocate.  I will be posting at her site later in the week about how Asperger’s and neurotypical siblings benefit and hinder each other.  Some points I will touch on include:

• increased compassion for the NT sibling
• increase in socially inappropriate behavior for the NT sibling
• social skills practice partner for the Asperger’s sibling
• sense of abandonment in the Asperger’s sibling when the NT sibling develops outside relationships

My comments will be based on my own experience of living with this dynamic for the past six years.  Please stop by and check out the post!

Vitus Bering - the real discoverer of Alaska

A day off from school can be a very enlightening thing.  Gus was home yesterday, and although I always do homework with him after school, it was a different experience doing it earlier in the day.  He absolutely did not want to do the work when I wanted him to and there was a good deal of acting out: rolling on the floor, loud talking, purposely filling in incorrect answers…I was frustrated, he was annoyed - actually this sounds like a typical day, except for what happened next.

Gus was (has been for several days) fixating on geography: who discovered ____; what’s the capital of ___, that sort of thing.  So, instead of doing his reading assignment or his math problems, he was going on about that.  Finally, as he was rolling around on the floor asking about who discovered Alaska, I said, “Well, I think Admiral Perry started out with 3 ships and then 5 more ships followed along.  How many ships got to Alaska?”  Booyah!  Instant transformation!  We got through a sheet of 3 digit addition, 3 digit subtraction, the stupid reading assignment about how to meet a dog (he hates dogs) and then he asked for, DEMANDED, a third math sheet.  He did not want to stop working.  Amazing how such a small shift completely commanded his attention.  Each problem became a made up story about some exploration to some country.  By the way, I stink at geography and I was spouting more crap than a newborn, but he didn’t care - I was working with him on his terms and he loved it!

So this begs the question, “Why can’t his teachers do the same thing?”  First of all, why is what they want to teach more important, more significant than what he wants to learn?  Does he really need to know the proper way to greet a dog?  It’s totally irrelevant to him - he’d be running in the opposite direction.  However, Admiral Perry having to fight off a team of sled dogs because he approached them the wrong way is pretty darned entertaining.

I looked back at some of his assignments, and aside from their irrelevance to his life except for the fact that they were readings about animals and he likes animals (I like chocolate chip cookies, but too many and I will still get sick to my stomach), there was no context.  For example: there was a booklet of geometry questions.  Across the top, he had written, “NOOOOOOOOOOOO!!!”  That was a hint right there that he wasn’t interested in the assignment.  But I wonder, if the teacher had sat him down and said, “Pikachu is battling Paul’s Electabuzz and the only way to make his volt tackle work is if he can bounce off a tree at a right angle.  Find the right angles.”  I bet he would have found them all in a matter of seconds.

I’ve been told on a regular basis that my son can’t or won’t focus.  He’s not the problem here, I’m starting to think.  He can focus just fine - on the things that interest him.  Is it his job to shift his interest to what the educational system thinks is relevant and important, or is it their job to present the information to him in a way that will engage him?  I won’t even dignify that with an answer.

The point is that we have to stop laying blame against people who are just being who they are, and as caregivers (parents, teachers, administrators, therapists, physicians) we need to get over ourselves.  What we think is significant ain’t necessarily so.  If we are going to have any hope of helping individuals on the autism spectrum, or with ADHD, or any kids for that matter, we need to start allowing for some creativity and flexibility in thinking.  We’ve got to think out of the box a little and stop being so draconian - let’s at least meet them halfway.  Can it really be that hard?  I somehow don’t think it is.

P.S. Rear admiral Robert PEARY discovered the North Pole(this is disputed); Vitus Bering discovered Alaska; Henry Hudson did discover Manhattan, but Peter Stuyvesant did not discover New Jersey.  Pikachu did in fact kick Electabuzz’s butt.  Fat lot of good that traditional education did me.  I’m sure Gus will figure out the truth about all these guys, I doubt I’ve done irreparable harm.

These videos came to my attention courtesy of my sister-in-law.  They’re both quite beautiful in the sentiments they express.  The interesting thing about the timing when I got these videos is that I also got a book - work related - about the gifts of ADHD, not exactly the same, but similar enough.  If the universe is trying to tell me something, it’s certainly not being subtle!

The first video is entitled When God Created the Autistic Child, and the second is Autism: Not As Strange As It Seems.  With the second, you have to be sure to watch the entire thing before drawing any conclusions.

Hope you enjoyed them and please let me know what you think!

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.

 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. 

This is not exactly a brand new report, but Harvard researchers have some telling findings about the genetics of autism, as reported today in The Phoenixville News.  The most interesting part of this for me was a statement about why educational programs seem to have such good results for autistic students:

The findings also may help explain why intense education programs do help some aistic children — because certain genes that respond to experience weren’t missing, they were just stuck in the “off” position.

I’ve been thinking a lot about Gus’s progress and development over the years, and I’ve come to the conclusion that he was at his best when he was getting ABA (Applied Behavioral Analysis) services with a very competent ABA teacher.  He’s done all right with the TEACCH method, but the more emphasis that’s been placed on his academics, it seems the more he loses focus, which they then want to ‘fix’ with medication.  I think that if he still had ABA, even if only a couple of times a week, he’d be so much better off.   Both methods have their merits, but I think a combination would work the best FOR GUS.

As for the genetic findings, they’ve given me a good deal to think about.

“We have trouble getting through to these children, but with repeated stimulation we can do it,” he said. “These are circuits that have an ability not so much to recover but to work around the problem.”

I’m all for creative solutions!

 Art by Eric Drooker

What an entitled and snooty place the world is turning into!  While following the comments on a thread at Autismvox, this article, about a Canadian restaurant asking a family to leave because their autistic daughter was having a meltdown, came across my radar.  It was blogged about by Renee at Womanist Musings and subsequently by Kev at leftbrainrightbrain.  The comments and reactions to the original story left me feeling angry and ashamed to be part of the same species as some of these people who seem to think the disabled should just sit home and rot so the ‘better behaved’ folk can live in their perfect little bubbles.  The patron who refused to pay until the family was removed from the restaurant just disgusts me; I hold them more at fault than the restaurant manager.

Here are a few things that some people need to get through their thick heads:

1. Many autistic individuals are unable to communicate.  Sometimes meltdowns happen because the individual does not have the means, which neurotypical people often take for granted, to express: fear, discomfort, distress, disappointment, anxiety or dozens of different emotions and sensations.  This creates frustration that heaped on top of the other environmental stressors are the recipe for a full-scale meltdown.

2. When an autistic person gets into the meltdown state, they are not ‘acting out.’  They are experiencing a physiological response that they are most likely unable to control.  This is not a conscious choice or bratty behavior, and to some degree it happens to all of us even if not as intensely.  According to Mary Sheedy Kurcinka in Kids, Parents and Power Struggles, “When confronted with threatening or frustrating situations, stress hormones surge through our bodies, triggering the brain to be ready for ‘fight or flight’…You’ve been emotionally hijacked.  Your stress hormones have created what’s called ‘neural static.’ You can’t think straight…instead you react instinctively and reflexively.” (Kurcinka, 37-38) 

3. When the parents of an autistic individual are faced with a meltdown, it is stressful for them as well, and their focus is naturally going to be, and rightly should be, on helping their child to become calm - not on someone else’s distaste at being confronted with unpleasantness.  Stares, snotty remarks, threats and forced removal do nothing to help the situation, but instead make things much worse and make it that much harder for the parents to do their job.  It creates neural static in the parents and makes it harder for them to think of the best way to defuse the situation.

What would help in these situations can be as simple as six little words: “Can I do anything to help?”  That’s it.  Maybe the parents will say no, but a moment of support and compassion can help soothe the situation enough to bring that stress level down.  And it may take more than thirty seconds, which in the age of instant gratification is, I know, a mortal sin.  But society needs to get a grip.  The disabled have every right to be in public just like everyone else. 

In a similar situation, I may have taken my son out of the restaurant, but he’s only seven.  I can just pick him up (usually) and go.  But when he’s a little bigger, I may not be able to, so should I lock him away so that someone with puerile and unrealistic expectations can go to a family restaurant for a quiet and peaceful meal?  News flash: where there are kids, there will not always be peace and quiet.  Perhaps if that’s what someone needs, they should not go to a ‘family’ restaurant, or be in any public place for that matter.  I hear that bomb shelters are pretty soundproof.

We went to a wedding a couple of weeks ago, and one of the guests was there with her two year old.  He wasn’t autistic, just two.  He cried through most of the ceremony and was all over the place at the reception.  He even tried several times to run into a party in another room (I guess they had better music).  At no point in time did anyone give her a nasty look.  On the contrary, several people (including myself and my husband) actively tried to help out to give her a break so she could at least grab a bite to eat.  If people would just extend that same compassion and kindness across the board, the world would be a much nicer and less stressed out place. 

 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.

It’s Thursday again, so that means it’s time to find three reasons to be thankful about the unique gifts of autism, Asperger’s or anything else that should come to mind!  Here are my three for this week:

1. I am thankful for my son’s special education staff.  It’s been a pretty good year and he’s grown so much.  They are caring, patient (mostly) and really value each child’s strengths.  I haven’t seen eye to eye with them every step of the way this year, but overall, I’m very grateful for their presence in his life.

2. I am thankful that my son won an award yesterday for Excellence in Science and Social Studies.  This tells me that whatever else he tunes out in the world, he is very interested in the way things work, the truth and heart of things whether it be germs or society at large.  He told his teachers he wants to be a scientist, and knowing him, he just might.  He just might.

3. I am thankful that my son’s front tooth finally decided to come out!  Both his front teeth had been loose for a while.  But the way they loosened, the right sort of crossed behind the left and pushed it forward.  It looked like a Rockette out of step with the rest of the kick line.  Well, the right fell out weeks ago, leaving the left poking out all by its lonesome.  It was kind of cute in a goofy way, but it was getting pretty hard to brush without annoying him, and it was making him lisp.  So I’m glad we’ve moved on.

Please, add your gratitude below!  Any volunteers?  Don’t make me come and pick someone…

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.