My Autism Insights

Bonnie Sayers, of Autism Family Adventures and coordinator of the recent Autism Twitter Day, recommended that I do a post on Eczema since both my kids have to cope with it.  I intended to write it but kept getting distracted.  Then my sister-in-law sent me some information, and now I figure that’s the Universe’s way of telling me to just write the darned thing already.  So…

Gus and MM have both had to deal with eczema since they were babies.  The Mayo Clinic describes eczema , or atopic dermatitis, as an inflammation of the skin.  Our old pediatrician, when Gus first started displaying the signs, simplified it for me as “severe dry skin.”  It has often been thought that eczema was an allergic condition; however, a New York Times article from April of 2008 suggests a genetic cause.  Since I am by no means an expert on the subject, I’ll just stick to what we’ve experienced with the condition.

Many people experience eczema during the change of seasons or during the cold weather seasons.  That is the case with MM who has had such bad eczema flareups that she’s gotten bad scarring.  Gus gets his flareups in the late spring/summer.  The minute the temperature goes above 70, he gets the patches, usually behind the knees, inside the elbow, the wrists, and between his shoulder blades.  This winter, MM has been getting bad rashes on her wrists and hands, I expect because she is very careful about regular hand washing, which leaves her skin dry.  I send her to school with a hand cream, but what are the odds that a kindergartner will remember to use it all the time?

It has been suggested to me that diet could play a role in the severity of eczema and that certain food can exacerbate the condition namely:  wheat, eggs, milk, shellfish, nuts, strawberries and chocolate.  If you suspect that your child may have a reaction or sensitivity to any of these items, the best way to find out is by an elimination diet, which means removing these things from the diet for at least two weeks to see the potential effect and then reintroducing them slowly, noting any differences.  In terms of my own kids, looking back to when their eczema was at its worst, they’ve only regularly eaten 3 of those things.  When Gus was on a dairy free diet for 6 months, it was during the time of year when his flareups are typically the worst.  The lack of milk made only the slightest difference, if any.  We could possibly try to eliminate strawberries or eggs (MM doesn’t eat eggs anyway), but I think if I tried to remove wheat products from our diet again, I may get slapped with divorce papers…literally…from my husband AND kids. So we will have to leave the dietary interventions alone for now.

Laundry detergents and soaps can affect eczema for some people as well.  Since Gus has always shown sensitivity to anything on his skin (and his father has to an extent as well), we only use fragrance and dye free detergents.  Even when we get the ‘natural’ and eco-friendly detergents, they are always available in a ‘free’ form, meaning no dyes or fragrances.  The same goes for fabric softeners.  We use Dove soaps almost exclusively, only switching if we try some sort of organic soap.  One thing that worked well for Gus was Dr. Bronner’s Hemp/Tea Tree liquid soap.  The rashes actually got smaller almost immediately using that, but neither one of the kids will tolerate it because it smells very strong.  Stinky, but it works.

So, how do we manage the flareups?  Moisturizing.  Lots of it.  Several layers of it, every night.  Because I like to try to use all-natural products as much as I can, one year I tried pure aloe vera gel to manage the rashes.  It worked okay.  It definitely helped, but the rashes and discomfort were always still there, just muted.  And the aloe required several reapplications during the day, which was not all that practical for Gus who was in school even over the summer and couldn’t apply it himself.  For right now, here’s what’s works the best for us:

Immediately after baths - Aveeno oatmeal lotion (or a comparable brand) applied liberally, all over the body, followed by a thick application of good old fashioned Vaseline or some other petroleum jelly.  If there is a particularly bad flareup, I may use the tiniest amount of hydrocortisone before the Aveeno, but we haven’t had to do that much at all this year for MM (Gus isn’t having any flareups at the moment).  During the ‘off’ season, when the rashes go away, I still use Eucerin (or something comparable) after baths because even without the rashes, both kids still have dry skin.

A quick word about petroleum jelly.  I know many people prefer not to use the oil based product.  I tried to avoid it myself (hence the aloe vera).  We’ve tried other means of dealing with the eczema aside from the ones I’ve mentioned.  I have to say - the only thing that has worked significantly has been the moisturizing regimen.  That’s my story and I’m sticking to it.

But since every body is different, I’d be most interested to hear about others’ experiences with treating eczema!  Please share 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.

zen garden image from nationalgeographic.com

I read a lot about autism these days, and one thing that tends to raise my hackles is when people talk about autistic children as broken, kidnapped, lost, or insert bemoaning term here.  When Jenny McCarthy released her latest book, I pretty much ignored her, because I just can’t take her seriously.  Then PETA decided to try an ad campaign exploiting autistic children.  They had billboards with a bowl of soggy Cheerios making a frowny face that read: Got Autism?  This was to imply that if you give your child milk, they’ll become miserable autistics.  That was bad enough, but when I looked at PETA’s website, there were comments applauding the ad campaign from parents of autistic children and blaming the loss of their children on milk.  That was the last straw for me.  There has been more and more evidence to support the fact that autism is not caused by vaccines, mercury, or diets, but that it is predominantly genetic.  So it seems to me that the conversation should be about what to do to help those individuals deal with and environment that poses constant challenges instead of remaining in this false loop of logic.

Raising autistic children can be, often is, hard.  Raising any child can be, often is, hard.  Regardless of what each child’s challenges are, it is a parent’s job to do all they can to prepare their child to function in the world.  As a parent of an autistic child it is my job, to the best of my ability and to the highest capacity he has to learn, to prepare my son to function in this world-not the world I wish we lived in, but the one that actually exists.  And notice, I don’t mention anything about making him “normal.”  He’s perfectly normal-for him.  (And honestly, some of what is called “normal” in our society is pretty despicable and scary, so let’s leave that word alone.) Yet, I do have to help him to be able to go out there and co-exist with others.  Yes, it’s hard, but that doesn’t negate the need or my responsibility.  I absolutely get tired of repeating things thousands of times.  Of course it’s frustrating to feel like he might never “get” what I’m trying to instill, but I still have to try.  And I don’t feel bitter or robbed or any other sort of loss that so often seems to be be the stigma of life with an autistic child.

“You get what you get, and you don’t get upset,” is an appropriate line from one of the dozens of kids’ programs that rule my television.  That’s what you sign up for when you make the decision to be come a parent.  There’s no menu selection tab for “easy child.”  Okay, so my child is autistic…things will be different than I expected, probably a lot harder…move on and deal.  It takes time to get there, but ultimately, for the sake of the child you love, you have to.

When Gus was little, he had a fascination with the bottom kitchen cabinets, where I always kept cleaning supplies.  I tried a child gate to keep him out of the kitchen, but he was pretty wily and always managed to get around/through/over them.  Clearly, he was not to be thwarted, and why should he?  At some point, he’d have to be allowed in a kitchen, and he should be able to do so safely.  So I moved anything remotely dangerous to a high shelf, and made the cabinet under the sink my place for Tupperware storage.  Being allowed to play with the Tupperware was a safe compromise.  I still had to redirect him from other cabinets, which he was not always happy with, but eventually he stuck to his area.  Lots of repetitive, unpleasant redirection that paid off.  He’s asked more than once to take cooking classes.

A more current issue is that Gus has always tended to run around after dinner (in the past it was all during dinner) and unwittingly, he touches anything in his path.  The problem is that 90% of the time, his food has to be covered in ketchup or some sort of sauce.  For a long time, the walls and curtains always looked a mess and I couldn’t see a way to get a handle on the situation.  He’s learned to sit at the table most times, but as soon as he’s done, he goes for a couple of laps around the room.  He should, and wants to, respect his home.  Finally, we just make him stop in the bathroom to wash his hands before going on his circuit.

These are two pretty minor things we’ve had to deal with.  There were bigger lessons that took years to teach Gus like not running into traffic, potty training, or writing his name.  Tough challenges, but things he needed to learn.  They took patience, creativity, consistency, and faith that he’d do it eventually.  There were many days I wanted to just give up, but we just kept re-evaluating where he was at any given time, and working from there.  We have to keep looking at our childrens’ strengths and adapt to them.

I’m not suggesting that I know what the future holds for us, or that there aren’t those parents whose children’s autism is so severe that their only choice is to make the hardest decision to honor where their child is by having that child live in a residential care facility.  All I’m saying is that our attitude at any given moment, the way we view our autistic children, will have a direct impact on the way they view themselves, and that in turn will greatly effect their ability to navigate the world around them.  If we look at them with love, acceptance, and faith we offer them a much greater service than viewing them as damaged or as burdens.  By working with their strengths, we give them the confidence to know that they can interact with an environment that isn’t always so attractive.  By accepting the reality of the present moment instead of lamenting what we wish it would/could/should be, or worse, looking for scapegoats, we ultimately make things a little better for everyone.

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.

I’ve been thinking about the latest research that parents who tend to be ’socially aloof’ are more likely to have autistic children.  This was how the conversation with my husband went when I first mentioned the findings:

“So they’re saying now that aloof parents are more likely to have autistic kids.”

“Isn’t that just like what they used to say about parents?  I don’t think anyone can say we’re not affectionate toward our kids.”

“Uh…I think they meant aloof toward other people.”

“Oh.  Well, then yeah that would be us.”

Reading the linked article, I saw an exact replica of myself.  My husband’s a little more outgoing, but does sometimes struggle socially.  I tend to be very introverted.  We both have instances of being very repetitive and I can be a bit on the obsessive side.  Being that I’m past the self-blame stage, all I can do is be somewhat amused.  Nothing we can do to change it now, and honestly, I wouldn’t if I could.