The puzzle

Just putting out some thoughts and observations...

Autism.  Research.  Causes.  What works.

For a long time (relatively), autism was considered purely behavior-related and psychological/mental.  It was treated as such, with treatment focused on different methods for changing behavior.  Utilizing home environs and the family, or the school environment and teaching methods; steps were made and valuable methods were developed and understanding was gained.   At some point attention was given to sensory problems, and ways of limiting certain input and giving needed input were developed.  All of this was good.

Then, parents and a few practitioners and researchers started looking beyond behavior.  There are several medical/biological issues that are common among kids with autism, including malabsorption of nutrients in food; seizures; gut issues--diarrhea, constipation, bad gas, yeasty-smells, abdominal pain; susceptibility to viruses; susceptibility to ear infections and respiratory infections; unexplained rashes and eczema; and the list goes on. 

People started seeing these as pieces of the puzzle of what autism looks like in an individual.

Some see these co-morbidities (two or more coexisting medical conditions) as perhaps underlying causes of behavioral problems rather than a separate issue.  For example, if a child has a headache and can't tell you they are hurting and therefore can't get relief, they might get upset easily or even hit their heads.  Or if a child's stomach is hurting and again they can't express this, they may curl up, rock back and forth, or lay on the floor on their tummy.

Some began to see autism as biological, as well as psychological.  They already knew the nervous system is involved because the brain is affected.  But, somehow the immune system and the gastrointestinal system are also affected.  Perhaps other systems as well. But which came first?  Did the autism cause these biological issues to appear? Or, are there biological problems in the individual which add to, or even cause, some of the problems of autism? 

At the same time, researchers realized that autism is not entirely genetic, so there must be environmental factors that contribute to autism.  Sadly, I must say that more research funding has been given to trying to determine the genetic components (isolating what genes are affected, etc.) than to discovering which environmental factors contribute and can be changed/controlled. I saw an article very recently that said a Stanford study showed that genetics accounts for 38% of the risk for autism, and environmental factors account for 62% of the risk.

So what we have ended up with is different groups of people focusing on one of these issues or one of these biological systems and trying to address the problems and seeing if the individual with autism benefits.  They have met with varied success.  A few think-tanks, like the Autism Research Institute, have tried to bring all the different area experts and pioneers to one place periodically, in hopes of putting some pieces together and glimpsing what the bigger picture is.  Ironically, the mainstream medical community do not often attend these, although they are invited.

Let me give you some examples of these different groups.

Pediatric GI doctors have looked at the gut and intestinal issues and recommend testing for diseases/disorders like Celiac Disease and GERD.  These issues are typically treated with a change of diet.  They also look at the poor absorption of nutrients, pointing to the body not breaking down the food correctly, or faulty intestinal lining letting things into the bloodstream that shouldn't be there.  So they recommend enzyme supplement for proper digestion, and pro-biotics and other things to try to correct the lining of the intestines.  Some individuals with autism have found some help with these treatments---less severe symptoms, relief from digestive problems, and even some disappearing of autistic traits.  But not all are affected to the same degree by these methods, and some not at all.

Nutritionists and dietitians have looked at the diet.  There are definitely problems with an autistic child's typical diet:  self-limiting to only a few foods, unhealthy eating habits both in quality and quantity, resistance to new foods or a new place of eating (restaurants, new school).  So this group of people have taken their knowledge and developed specialized diets.  And oh, the number of special diets there are out there!  They take out foods.  They put in special foods.  They test for food allergies.  They recommend vitamin supplements because the person's diet doesn't have enough of something.  They recommend special eating therapies for the child who is throw-a-tantrum-hurt-myself resistant to eating foods other than the the five that they like. (I am not lying about this.  The saying "they won't starve themselves, just wait them out" does not apply to some kids with autism.)  There are special diets to help heal the gut problems found by the GI doctors.  There are nutritionists that will do tests and ask questions about the individual, and customize a diet specific to that individual. 
If I sound critical or cynical it's only because of the sheer number of different diets and opinions on these diets.  Many individuals with autism find a lot of help and hope by changing their diet.  Again, some do not.  But it's not something that will hurt them or make them worse.

A few go a little further on the diet/nutrition aspect and look at the eating habits of modern Americans as opposed to other cultures, or opposed to eating habits from 50 to 100 years ago.  They recommend getting away from processed foods and eating natural and whole foods.  They point to pesticide-treated and genetically modified crops and advise buying organic or from local farmers.  I see some merit to this and think these are good ideas for all families, regardless of whether they have a member with autism.  However, it is both expensive and counter-cultural, therefore it can be difficult to follow.

Can you see how this could be overwhelming to the parents of a child with autism?  And I haven't even touched on the immune system issues which would go into vaccination schedules, overuse of antibiotics, drug use during pregnancy, etc.  Or the neurological experts that look at rates of development, neurotoxins from metals and other sources, the kinds of food that benefit the brain, etc., etc.! Where do you start?

Very few of the treatment methods I've mentioned are covered by insurance except for maybe a doctor visit, and (rarely) a few lab tests.  Granted, I can see why an insurance provider would not want to cover these, if I look at it from their perspective... Few of them are proven to be effective, many of them help some patients but not all, and just the number of treatment possibilities---where do they draw the line?

So you can't do all of these treatments at once, but you don't want to do them one at a time because you don't want to wait that long.  Usually you do two, three, or even four. It depends on your resources of money, time, people, and availability of services in your area.  This factors into the question of what treatments are most effective, because if you are doing more than one treatment at a time and the child makes progress....which treatment was the one that helped?   Was it just one, or was it a certain combination of methods?

I'm not sure exactly where I am going with all of this.  Possibly, this is why when I look into current research, articles, and new treatments I get overwhelmed and depressed.  Is there something more we should do?  Is there anything more we can do right now?

Pharmaceutical companies fight against vaccination questions and try to find something they can patent and sell to all these families.  Doctors and the CDC have difficulty accepting what they consider "complementary and alternative medicine" treatments.  Industries try to comply with stricter regulations, and the EPA et al. gets more money in their tills.  These are blanket statements, so yes, there are exceptions.  The ones with a child or other loved one with autism are usually those that step out from the system and do their own research. (sorry more cynicism)  There are "politics" even in the world of autism research.


It definitely seems like we are seeing a fragmented picture puzzle, with pieces still missing, and connections not being made.  This is one reason why you often see a puzzle piece as part of the logo of autism groups and autism awareness events. 

Every parent's dream is that one day all the pieces will be seen and put together, so we can help our beloved children to live out their dreams and reach their full potential.  In the meantime, love them and love us.  See beyond the behavior problems to personalities.  Beyond disabilities to abilities. Beyond the oddities to the beautiful.

Slow and steady wins the race

That's what I told myself today.  I find myself with more kid-free time (cue: applause), so I am attacking the house again.  It's a little daunting.  Perhaps I should say overwhelming!  But getting started is the first step.  I have a tentative plan in place.  (All my plans are tentative, because in this house you have to be flexible!)

I think part of the problem last fall was that I could only do short projects; and even then, I would likely get interrupted at some point.  Instead of 3.5 hours each day, I now have approximately 7 hours.  This allows for errands, laundry, dishes, meals, and all that other normal stuff, PLUS the re-organization that this house desperately needs.  For the first time that spring garbage---I mean, garage---sale actually looks do-able!

Today I reclaimed part of the living room and filled a large box with an assortment of toys, clothes, and books to sell.  That may not sound like much, but I'm just getting started and "slow and steady...." ---you know. 

I'm going to keep at this room until it's done, then go on to the kitchen, etc.  I am organizing and cleaning as I go; using the four-box method right now.  If you don't know what that is, I can explain some other time.  I found a great website on home organization with articles about de-cluttering and home storage ideas.  Once I reach the boys' rooms, I will need to do some assessments of available storage space and probably rearrange some things. 

And, yes, I am still making it a priority to take good care of myself and my family.  The house has always come in second to these.  That is why it needs a major overhaul. 

This is part of what I've done. Yes, the sofa is broken.  It's going to go soon. Go to the dump, probably.
 

Hello,

Courage.  I did it again.

I usually am so afraid of doing the wrong thing that I do nothing, and so miss the opportunity to do good.

It may not have done any good, but I did what seemed right and good.  And afterwards, I was glad.

Thank you

2012

Yes, I know January is almost gone.  But in case you haven't noticed, I don't blog every day so I'm just now getting some things posted.  (Not that I don't want to blog more.  I just don't have the time.)

I have been thinking about this year and what I want it to hold.  I don't make resolutions, but try to create new patterns and habits.  

This year I want to be especially sensitive to the leading of the Holy Spirit; and then courageous to do or be or say what He leads me to do and be and say.  This (non)resolution has already led me to do a few things that I might have been scared to do a few years ago.

Courage.

"For God did not give us a spirit of timidity, but He has given us a spirit of power and of love and of calm and well-balanced mind and discipline and self-control."   2Timothy 1:7(Amplified)

Diet changes

I haven't talked about the SBP diet for several months, so I thought I'd let you know how things are going and where we are...

The diet made some difference in their behavior and progress, but not enough to offset the social isolation we started to feel.  We were not being ostracized, but we were having to turn down invitations and avoid certain social activities in order to stay on track with the diet.  There is already a certain amount of isolation felt by families with kids on the autism spectrum: embarrassment over meltdowns, kids not adjusting well to new situations/people, that feeling of different-ness from others...all leading to the feeling that it's just easier to avoid those situations.  

So we will continue to stick to the diet at home, but we will go out to eat with people and go to parties, etc.

"There's no place like...grandma's house"

If you come to my house you won't see perfect.  But my family is more important than my house. And the inside of ME is more important than the inside of my house. 

However, I probably won't invite many people to my house until I can get some major cleaning and organizing done.

I just don't know how to get my house to a clean state and keep it that way.  I may not be able to do that right now.  There are limits to my time and energy and the house is not always my top priority these days.  It might bother me that the walls of every room have some artwork on them, but I will not stress about it.  (At least, not all the time.)

Giving a little grace to myself.  And if I come to your house, you won't hear me complaining about dust or a messy room.