Taking the Scenic Route

No, not National Football League and the Associate Press, but Natural Family Living and Attachement Parenting. 

For those going “Huh?!?” here is a bit of cut and paste and some links from Wilkopedia:  Attachment parenting link.  and, since there isn’t a direct link for NFL, here is a c&p from the AP area about NFL:  Many attachment parents also choose to live a natural family living (NFL) lifestyle, such as natural childbirth, home birth, stay-at-home parenting, homeschooling, unschooling, the anti-circumcision movement, the anti-vaccination movement, natural health, cooperative movements, and support of organic food.

I have been a member of MDC (mothering.com), a NFL/AP community since Zane was about 6 months old, and have been relieved to find some like-minded mamas.  However, the parents of autistic kids are met with some different challenges when they start coming to terms with a diagnosis.

First, there is a general belief that instincts are far more powerful than books, charts, and statistic.  Attachment parenting is often called ‘instinctual parenting’, and it is.  The problem you run into, when you have a developmentally delayed child, is that denial can be more powerful than instincts.  Once you work through that, you might be able to look back and see that your instincts did indeed give you warning, but you were so deep in denial that you couldn’t hear that voice.  Plus, as we all know, all kids develop differently…there is a wide range of ‘normal’, and a lot of autistic behaviors are fairly normal behaviors, taken on their own.  It is just when they are all added together that you start seeing autism.

Second, as a group, there is a huge distaste for ‘labels’, which means there is a hesitancy to get your child evaluated over concern over having your child labeled unfairly.  Since there is a distrust of institutions, there is a distrust of any label those institutions hand out.  Many people have come to this kind of community because of bad experiences with institutions, so the distaste is very deep rooted and often quite justified.  It is, after all, the main function of institutions to provide a framework for society, so by their nature they are going to categorize people into nice, neat little packages.  The problem is, humans are not that neat and tidy.  If you have ever experienced the negative aspects of labels, you are going to be more sensitive to how it can steamroll over your life and therefore, much more resistant to allowing that in your life.

Third, because of the distrust of institutions, there is a distrust of the educational system.  There are a lot of homeschoolers, including unschoolers in this group.  I have long planned to home school, and because of that, did not really feel the push to get evaluated by the school system (that I really don’t trust very much, especially the district where I live) because it really didn’t matter if he was ‘ready’ for traditional school, because I wasn’t sending him to school anyway.  I especially railed against the cry of ‘you have to get him socialized’ because “socialization” equaled “years of being bullied and crying myself to sleep at night” to me.  Plus, they have mostly taken out recess, music, and art from the school districts, and Zane absolutely NEEDS to move and blow of steam physically or he will never be able to learn.  He also isn’t very good at sitting.  at all.  He is not going to fare well at this point in a typical classroom.  As he matures, he might be fine, but he is clearly not ready for that kind of classroom now.  

I am still dragging my feet a bit to get him in the school system because what we are doing now works really well for him, and he comes home so wiped out, I can not imagine pressuring him to be in school any more than he is.  I think it would result in total shutdown because it would just be too much for him.   And, how do you trust a school system who has people on staff who’s entire job is to make sure the special ed kids don’t cost too much without taking into account the best interest of the kids?  I don’t want him babysat for 8-9 hours a day, I want him learning and being treated with respect and dignity.  I know there are good people within the school system; good teachers, good therapists, but the system itself sucks.

Forth, because the community is anti-western medicine, you have several conundrums. 

Although I took my child in for well baby checks, a large number of NFL parents don’t because well baby checks are mostly used to vaccinate kids. If you delay or don’t get vaccines, you can run into some really hostile doctors, which just reinforces the anti-doctor stance, especially when you are threatened with CPS because of alternative parenting choices.  (BTDT – at the 3 year appt. the doctor berated us for breastfeeding, co-sleeping, cloth diapering, not forcing him to cry to sleep, not having him in daycare, delaying the MMR, not forcing him to eat certain foods including cow’s milk, and not having him on a ‘normal sleep schedule’, and told me I would be neglectful if I didn’t circumcise the child I was carrying if it was a boy.  By the time he got to suggesting evaluating him for autism, I wasn’t listening any more and had lost all respect for him).  How likely are you listen to or return to a doctor, who might see the signs of autism, when you don’t feel safe?  Not likely.  This dynamic certainly does not help getting a diagnosis and early intervention.  I know this was detrimental to us getting intervention earlier than we did.  I have since been fortunate to find a doctor who treats us with respect, whom we have grown to trust, who makes us feel comfortable enough to really address some of Zane’s issues more openly.  I wish I could have found somebody like her a lot sooner, but I feel very fortunate to have her on the team now.

Now, let’s explore one of he major autism camps:  autism is mercury poisoning, vaccine poisoning, or caused entirely by environmental insults.  This set of beliefs fit nicely into the NFL philosophy.  The desire to maintain our own health and ability to thrive on this planet is why people become environmentalist, support organic farming, and are politically active against industries that pollute.  It is why we strive to lessen our impact on the environment, lessen the poisons we put out there.  The idea that the crap we have done to the environment is directly affecting people’s health is a nice, neat straight line that proves our point.  The idea that antibiotics, medicines, and medical interventions during pregnancy might have a direct negative effect on our children’s bodies and brains also fits that philosophy.  However, this is where it gets really sticky too.  If all that is true, why are there parents that don’t vaccinate, don’t eat fish (with mercury), have zero interventions in pregnancy or childbirth, don’t have the chemical diapers near their kids, don’t use chemical cleaning products, eat & serve organic foods, and have never given their child any pharmaceutical product, and yet, their child has autism.  Now, it is true that most of us haven’t done all of those things, but many of us have done most of them.  Not so nice and neat now.

Let’s take that a step further.  NFL means that you believe in the bodies power to heal itself and that you can avoid Western medicine, which treats sickness, and embrace natural medicine, which supports wellness.  Natural medicine starts with food.  So, when you believe in this philosophy, your first instinct is to see if any issue can be dealt with by diet.  I agree that a good diet is essential to health.  However, it starts getting more and more extreme the deeper you get.  Eliminating processed foods and chemically created foods is going to nothing but benefit a person, even western medicine will agree with this point.  When you move to eliminating entire food groups, you start running into problems unless you have a very good grasp on nutrition.  (and that pool of knowledge is often shifting).  To compensate for the things you are eliminating, you add in vitamins and supplements.  Now is where it really starts to get tricky and seems to be more opinion than fact…when you are trying to ‘cure’ something, you might try super-loading vitamins and enzymes.  Now you start running into some of the same problems as you do when you use big pharma…it is the extreme on the other end…it is still drugs if you are expecting it to act dramatically on the body, but it is unregulated and often untested.  The array of ‘plans’ are complex and often contradict each other.  Just as the mainstream medical community has a set of tests to diagnose, the alternative community has their own set of tests.  That market is dominated by hair and urine analysis, sent off to labs.  They are every bit as expensive as mainstream medicine, but not covered by insurance.  Whether or not the testing methods or results are any more or less valid than western medicine, is a matter of opinion.  I am concerned that the alternative labs are taking advantage of desperate people who can’t find the answers in western medicine.  Unfortunately, there isn’t a specific pathology for autism.  It is diagnosed by eliminating a lot of other things, and then matching up symptoms to a list.  Because there isn’t really a pathology, there isn’t a cut and dried ‘treatment’.  Because autism puts you in such a gray area, and people tend to be more comfortable with ‘doing’ rather than ‘being’, there is a lot of room for abuse of parents frantic to find answers.

If you already have the philosophy of food as integral to health as a core value, it is very easy, if you have the money (those diets and supplements and tests are really expensive), to gear all your time and energy to ‘curing’ your child.  When you see something as ‘wrong’ with your child, your whole life fills with fear and you will do anything to help them.  And you want it to happen NOW.  Frankly, it is difficult not to see your child as sick in the beginning, because that is how they are spoken about.  The mainstream community uses words like “disorder” and “delay” and “deficit”.  The alternative medical community will approach the child saying “how has this child been damaged / poisoned”.  Reports and evaluations are filled with what your child can’t do.  You, as a parent, are thrust into a world that is alien, with it’s own language and politics, and you are about as overwhelmed as is possible.  ( coincidentally, it sounds a lot like our child’s experience in the social world ).  You feel like you are in the middle of a tornado and can’t really form an opinion because you don’t even know the language yet.

Now, lets backtrack a bit and explore the Attachment Parenting philosophy as it relates to communication and sensory issues:

In this approach to parenting, you see the child as a person, in their own right, who deserves respect as a human being.  You see crying as communication, not manipulation.  You see rooting for food every bit as much ‘communication’ as a kid who runs up to mom asking to nurse.  You work to see the world from the child’s POV, and be in tune enough with the child that you are able to understand their wants and needs long before they can communicate them in the conventional sense.  You see them as communicating from the beginning…crying, tantrums, cooing, laughing…it is all communication.  If they are ‘asking’ to be held, you hold them.  If they are getting overwhelmed, you respect that and help them find solutions.  If they communicate that clothes don’t feel good, you respect that and accommodate it.  You don’t force them to eat food they don’t want to eat.  You don’t force them to hug or kiss people if they aren’t comfortable, you are tolerant of age appropriate behaviors, in general, and don’t expect them to act like mini-adults.  In general, they are allowed to be their own person and not just an extension of you. 

Now, lets take a minute to explore the two general autism camps.

The first group sees the autism as separate from the person.  It is poisoning, or disease, or damage.  It is something to be fought and destroyed.  It is seen as stealing away a child, who is somehow trapped.  This group strives for a cure and research into detecting autism so it can be eradicated from the gene pool.  (prenatal testing so you can abort if you want to).  It includes biomedical treatments, ABA, Speech therapy, Occupational Therapy, and Floortime therapy.

The second group, Neurodiversity, sees autism as a variant to the norm,  a difference, but not a defect.  This autism culture is said to be much where the deaf culture was a century ago (I have no experience with the deaf culture though, so I have no frame of reference for that).  It strives for accommodations and acceptance, but no or minimal intervention.  If they advocate interventions, it is not to hide or suppress the autism, only to help the autistic cope with the outside world. 

Here is where the cultures clash in AP & NFL.  From an NFL perspective, you instantly see an avenue to ‘cure’ autism via biomedical interventions.  From AP, you strive to respect the autistic person as their own person, with their own thoughts and needs, and treat them with the dignity you would anybody.  You see the non-verbal communication as being every bit as valid as verbal communication.

Where I am at right now –

Ever since I started realizing that ds actually did have autism (and there was a lot of denial getting there) I have felt so alone in my opinions. I am an active member at MDC, but most of the parents there are passionately “autism is mercury poisoning” and advice is on the dizzying array of urine/hair sample tests that go to labs that I am not sure are credible, diets that seem to contradict each other, and huge loads of vitamins and enzymes..more than I am sure is really a good idea. Although I agree that there is a good possibility that a lot of kids labeled autistic are suffering from mercury poisoning, it just doesn’t seem to fit ds. (especially when the rant is against the MMR, which ds has not yet received) It almost seems like many of the parents get ’stuck’ in the anger stage of grief, like ‘acceptance’ is somehow the same as ‘resignation’. They see the autism as something separate from the child, and an enemy to be defeated, akin to cancer. It isn’t cancer. My child isn’t going to die from autism. My child can die from some of the treatments the biomedical community advocates.

I absolutely agree that some of the autistic-like symptoms can be extreme food sensitivities/reactions, or that certain foods (or food additives) can affect behavior. I also know that different people react to the same things in different ways (like Benedryl knocking out some kids, but causing others to wig out). I see value in doing an elimination diet and seeing if it does help, but I am not sure that extreme vitamin regimens and enzymes is such a good idea, especially when you go at it alone with no doctor’s supervision. (I don’t inherently trust doctors, and if one strikes me wrong the first time I meet them, I move on. However, I think most doctors earnestly want to help people…it is up to us, as consumers, to discern which ones have the intelligence and critical thinking skills to trust their opinions.) If you can’t find a single doctor to support your goals, you better be damn sure you have educated yourself enough to truly understand what you are doing and not just following somebody else’s book or taking the advice of somebody on the internet.

Then I go to neurodiversity, which seems to have the overriding opinion that intervention is usually disrespectful to the autistic person.  On a basic level, I am more in line with that group. I don’t see autism as a tragedy, nor do it as something separate from Zane that we need to fight. I would much rather put my energy in fighting for Zane’s right to an appropriate education and accommodations so that he is able to enter the classroom/job site on an even playing field with people without his challenges.

I feel stuck in the middle. I see great improvements with ST and OT, but most of what has changed is that we are learning to help him interact with the outside world better. As a family, we were doing just fine, but he couldn’t interact with other people, and we couldn’t figure out how to help him do that. Now he is learning to navigate the rest of the world a little better.

One of his STs uses a little bit of ABA, in the form of discrete trials (which seems to be a fancy way of saying “flashcards” and “visually supported short answer quizzes”. It is marginally practical for real life (that part of it, she also does stuff that is enormously practical and we duplicate at home), but seems like it is really beneficial to get him used to being tested and evaluated. Although I don’t agree with standardized testing, I would be doing a disservice to him to not prepare him for it if I intend to have him in school. (more on that later). It gives him a framework to be able to show his knowledge in a way a tester can understand. It doesn’t catch everything, that is for sure, but at least they are able to get some level of understanding of his knowledge base.

Then there is Floortime, which I agree with the most. I really need to finish the book (in my spare time *humph*), but it sure seems to be a lot more in line with my views. At it’s core, it basically says to meet the child where they are at instead of where they *should* be. Sounds like good parenting to me, and sort of sad it has to be written in a book. A lot of what I have read is right in line with what we were doing anyway, so it hasn’t been difficult to incorporate in our lives. We don’t do a formal “NOW IS THERAPY TIME” in our house (unless there is a specific concept he is having problems with, but that is pretty limited). We just try to incorporate techniques from ST, OT and Floortime in a more mindful way than we did before we learned that a lot of the things we were doing had nifty little labels. (like, when he is getting really anxious/stimmy, we decide to do a few OT things that helps him get the deep pressure without him resorting to banging into walls to try and feel better inside his skin)

Like I said, I guess I am someplace in the middle. At my core, I don’t see anything “wrong” with Zane. I don’t see anything that needs to be cured. I just see a beautiful spirit, a curious mind, and a kid who need help putting the pictures in his head into words. I see him on a different timetable as typical kids, but that he will get there in his own time, in his own way.  I enjoy the way he thinks and the person he is.

On the subject of school.  I am having a hard time with that.  I was a bit apprehensive to put him in the language preschool he is in, although I felt like it would be good for him.  The autism day camp I had him in over the summer helped him a great deal, and helped me see that, in the right environment, he could really blossom in that kind of environment.  Right now, he is either in therapy or school 4 days a week, 5 days if you count gymnastics.  It is enough.  It pushes him to his limit.  When he doesn’t come home from those totally exhausted, I will consider putting him in school, but that might not be until next fall.  If he is ready this spring, I will pursue it, but he is good where he is. 

I realized that for now, home school would not have the benefits that being in the program he is.  If that changes, I will not hesitate to change it and possibly home school, especially in later years when he isn’t struggling with language.  I am pretty sure he is twice exceptional…both gifted and delayed.  He appears to be gifted academically…he can read to some degree, can spell some, understands numbers and today demonstrated that he can add and subtract.  He knows shapes and has a pattern matching skill that is considerably above age level.  Once he gets language sorted out, we are going to have a whole new set of issues with trying to keep him focused because he also gets bored quite easily.  Homeschooling might be a much better option at that point because Zach and I have the skills to deal with the academics and we can provide him with enrichment activities that are suited to his personality and learning style.  However, we are struggling to help him right now, so school and therapy is a benefit to us.  We are learning as much as he is right now.

We are still at the beginning of this journey right now.  I am still not sure how much of my optimism is just denial wearing a prettier dress, but I will take the optimism right now.   It is a much better place to be than wallowing in fear for the future.  I am doing all that I can right now, Zane is working hard every day and growing.  We are moving forward, step by step.