Sunday, January 26, 2014

When being part of the solution IS being part of the problem.

One of the most common issues in the world of autism is the perception of Autism itself as a problem - or even worse, as the personification of a problem.

It's fairly common in the early days of diagnosis when parents simply aren't handling the changes to their expectations but if it persists for more than a year then it becomes a problem which can end up doing a lot of harm.

Objectifying autism takes the focus off the child and puts it on the condition instead. Parents, groups and companies in this mode spend their time thinking about how to cure and prevent the condition rather than on how best to help their children.

The focus then becomes extremely negative and it is only a small step from discussion of murdering an imperfect fetus to the murder of a child under your care. This outlook doesn't help anyone.

It's not about "Saving the World", it's the smaller, personal stuff that matters

Being the parent of a child on the Autism spectrum isn't about "saving the world from autism" or preventing others from having to walk in your shoes. It's about arming your child with the knowledge and skills to make the best of their lives.

It's not about prayer, though you can certainly pray if you want to. It's not about words like "can't" or "never" either. It's simply about hope and perseverance and good parenting.

In fact, take away the word autism and the aims of the parent of a child with autism are the same as any other parent. We want our children to thrive and be happy.  The only problem is that autism presents bigger hurdles both from a personal achievement point of view and also from "acceptance by others".

Doing Good by being Patient
It's not a bad idea to get a handle on the general order of the developmental milestones but don't pay too much attention to the time frames. Your child will achieve these things in their own good time. You may find that sometimes those milestones come completely out of order too.  In my case, my son was a great climber long before he could walk.

Then there's things which just seem too hard. Your child may not handle some seemingly simple challenges, like eye contact or like hand-dryers in public toilets.  That's ok. There's no need to pressure them.  A lack of eye contact doesn't necessarily mean that they're not listening and as for dryers; just use the paper towels. There are more things in life to worry about.  Believe it or not, most of these things will come in time without you harping on about them or trying to force your child to do things that are uncomfortable for them.

Protect yourself and your children from bragging parents and grandparents.  They all want to say great things about their own children, how they got straight A's or have so many friends, or play so many sports, or instruments or read so many books, or do so many chores.  Half the time this isn't correct at all and even when it is, the conversation often isn't about the child - it's simply about the parent praising themselves.

Listening to other people's bragging this is detrimental to your relationship with your child and your feelings as a parent. Life isn't a contest and entering into this kind of thinking will only open the doors to a world of pain. 

There's no Solution, There is only life, love and laughter
The biggest problem with autism is the concept of a "solution". The idea that we can somehow "fix" our children and make them normal.  If you think that finding a solution is the answer, then you have part of the problem.  Looking for a solution is a good indication that you have not accepted things as they are.  That you can't move on and that you're in no position to help your child.

I don't personally believe that there's an "instant cure" for autism in individuals who have already been conceived and the reality of it is that even if such a cure were to be discovered tomorrow, it would be probably twenty years before it was effectively tested and available for use.  Most likely, such a "cure" would be priced out of the range of normal earners too.

No matter what you do or how much money you throw at autism research, the fact of the matter is that it won't help any child who is already born. All you are doing is helping companies line their pockets.  

If you really want to help those with autism, donate some time or money to providing respite care for parents or towards providing living and learning tools for children and adults on the spectrum. If you're an employer, consider employing someone with autism, you may find that they provide some unexpected benefits.

There is no solution because there is no problem, no puzzle to be solved only a child who is different who needs to be loved and to be shown what happiness means.

Sunday, January 5, 2014

Autism, Asperger's Syndrome and the Gluten Free Diet

One of the most frequently cited "treatments" for Autism and Aspergers syndrome is the Gluten Free Diet. Gluten refers to two proteins which are found in grains such as wheat, barley and rye. Gluten gives dough a spongy texture and it's a common ingredient in bread and pizza bases.  It's also used as a thickener in sauces and soups.

I've been asked again about the Gluten Free diet and since I've never really talked about it here, I guess it's something that I should discuss.  Take note though, I'm not a doctor and I'm not an expert on anything, except perhaps information gathering. Before acting on any self-diagnosis, be sure to consult a doctor.

What is this Gluten thing?
There's a chronic digestive disorder called celiac disease which causes people's bodies to "rebel against gluten" and mount an auto-immune response. This is a serious problem which can damage a person's small intestine.  It affects about 1 in 123 people. There's also a harmless bloating problem associated with gluten which affects a much wider group.

To help people with these issues, naturopaths often recommend a gluten free diet. In these cases it does a lot of good.  Unfortunately, like many "natural" solutions, it has outgrown its target audience and is now being promoted as a solution to "everything".

The Autism/Aspergers Connection
One of the stranger theories about autism is that it starts in the gut. The reason for this is that some studies have shown as many of 80% of children with autism having gut issues.  Of course, other studies have shown no correlation at all.

The studies center around the presence of bacteria belonging to the group Sutterella being much more prominent in the guts of children with autism versus those without and the fact that introducing such symptoms to rats produced "autism-like" behavior.  Unfortunately, at this stage, this research is as credible as Andrew Wakefield's famous "Mercury in Immunization causes Autism" claim, which turned out to be false.

What is clear however is that children with autism often have more frequent gut problems than those without. This could be due to a number of factors including picky eating, low hygiene and hereditary factors.  I don't for one second believe that a given diet "causes" autism but I have no problem believing that eating habits can affect how your gut feels.

It's also clear that anyone who has a gut disorder will find that it affects their behavior.  Constipated or loose children are generally more irritable and less settled than children whose bodies are functioning normally.  I think you could say the same for adults. Obviously people with health problems are going to feel better and happier if those problems aren't there.

Regardless of whether or not your child has autism, if your child has frequent gut problems then a gluten free diet is a possible solution but only when recommended by a nutritionist or naturopath and monitored carefully by a doctor.

So, if it's going to make our guts healthy and possibly make us all thinner, why shouldn't we all go gluten free? 

As it turns out, gluten free diets are not necessarily healthier and studies show that many gluten-free diets are deficient in fiber, iron, folate, niacin, thiamine, calcium, vitamin B12, phosphorus and zinc. I can attest to this because when I was on a self-imposed restricted diet years ago, I had great difficulty finding foods which satisfied the rules of the diet but didn't trip my taste or texture sensitivities. Sensitivities which are very common in children with autism. Eventually I settled on only a few options, one of which was unseasoned steak and the other was potato chips (crisps). I lost a lot of weight but I really don't think that I was "healthy" while on the diet.

At the moment, since there aren't so many gluten free alternatives for desserts and junk food, weight loss is common when eating a gluten free diet. It's not about eating gluten free though - it's simply about eating less junk.  Make no mistakes though, in labs around the world, junk food outlets are hurriedly experimenting to find ways to add gluten free alternatives to their sugar-infested product line ups.

It's seen by fast food outlets as "the latest craze".  Gluten free junk is coming and when it finally arrives in force, the "diet" will no longer have any health benefits for those without gut issues.

In Australia, we have an outlet called Hungry Jacks (similar to Burger King).  They brought out a Veggie Burger which quickly became a favorite with people on a diet.A few years later, when our government brought in rules about mandatory health statements on all food, it became clear that it had easily the most kilojoules of any food on their menu.  That's right, while it sounded healthy, it was actually the least healthy item you could buy.

I removed the brand name because it's not about who makes it, it's simply the fact
that this is a chocolate doughnut and that it's "gluten free", so it must be healthy by definition
When gluten free alternatives finally hit the fast food joints, they'll have to find something else to provide the spongy effect in burgers and doughnuts. In all probability, whatever they find will be far worse than gluten.

Gluten free is a great option for people with gut intolerance but it is NOT the cure for autism.