Managing Autism - A Personal View

With the chaos of yesterday (previous post), we had the unfortunate situation of being without Jack’s usual food.  As part of Jack’s autism management we have been following the GFCF diet suggestions.  That morning before we left home, we had packed sandwiches and snacks to last us through most of the day (aiming to be home in time for dinner), but of course, being held up along the way kind of threw out the idea of Jack staying free from those foods that affect his behaviours.

When the Diet is gone, you really remember why it’s there in the first place.

Having run out of food shortly after our stop at the service station on the outskirts of the city, we had to resort to the take away ‘cafe’ food available at the service station.  For most people it would have simply been a matter of contending with food that could best be described as greasy, cold and rubbery - for Jack, it was a gluten, dairy and artificial colour and preservative heaven!!!

We managed to steer him away from iced donuts and cream cakes, with hot (kind of luke warm) chips seeming the best option.  But with the weather the way it was (scorching hot in the shade), Jack wasn’t having a bar of that idea.  So a sandwich it had to be - and of course, cheese and ham was the only available filling, on wheat bread.  Jack’s eyes lit up when he realised what he was about to be given to eat (yes, we had managed to provide him with gluten, dairy, and hyperactivity causing preservatives), and it wasn’t long before his whole body lit up as well (hence the car and the giant bouncing machine??).

Did I mention that when the Diet is gone, you really remember why it’s there in the first place?!?

All I can say is that thank goodness he slept most of the added hyperactivity off overnight - and the extra sensory agitations should be gone by the end of the day!!!

I use the term ‘political’ because I much prefer to stay away from media hype, and heated opinionated discussion of topics, but I wanted to post what I have been ‘reflecting’ on today in relation to the world of autism.

My previous post related to Jack’s diet, and little did I think when I wrote it how closely related the topic was to that of the most recent heated discussion on autism.  As I wandered through blogs today, I began to reflect on all the discussion happening at the moment and my personal thoughts could pretty much be summed up as this:

People make choices according to what is right for them, and what may be right for some may not be for others.  However, personal choice is simply that. 

Steve and I love Jack unconditionally, and totally for who he is - and autism is part of that.  We would never want to change him, or take away his autistic qualities.  Autism is specifically a ‘developmental’ difference (the medical profession call it disorder of course), and so Jack will change as he grows up, but he will always have a developmental difference (again, part of who he is).

It’s interesting that I have been reading many opinions for and against diet being a cure for autism.  For me, the word cure doesn’t sit with developmental difference or disorder.  Development simply can’t be cured - it just changes over time and at different rates.  I personally see diet change as a path to easing symptoms of allergies.  It’s not a cure - it simply allows different experiences in some people who have shown to be allergic to certain types of foods.

Jack’s diet deserves much credit for some of his current life experiences.  However, it is no more an attempt at a cure than it is an attempt to make him someone who he is not.  But in terms of his aggression - yes that has settled, and his hyperactivity - yes that has settled, along with his severe outbreaks of excema.  Not cured, mind you!  But settled somewhat - yes.

I’m simply a mum who does what I can for my child.  Everyone makes their own choices, and I certainly make no judgement of that.  As I often say - I guess you take from things what you like.

Elissa

(the not normally political or opinionated mum - but then, what is normal?)

In a previous post we discussed the idea of a special autism diet - that is, a diet that is gluten-free and casein-free.  We implemented this type of diet with Jack, however we also took it a step further and completely cut out all artificial colours, most additives and preservatives, as well as most sugars and as many saturated fats as possible.

We made this decision after a consultation with a behavioural specialist.  As we mentioned in the previous post, many conventional doctors do not recognise a link between behavioural conditions and diet, but this specialist had seen huge improvements in children’s conditions where these ’toxins’, so to speak, were removed from the diet.  The process that we went through with the specialist was quite complex, more so than I am giving it credit for with my explanation here, but basically Jack underwent tests to ascertain what nutrients his body was lacking in, and what foods and toxins were causing sensitivity and behavioural problems.

The changes to Jack’s diet that we discuss next are by no means a ‘one size fits all’ approach.  The changes were specific to his needs and in no way do we recommend or take responsibility for such changes without specialist advice and monitoring.  In fact we suggest that specialist advice be sought before any diet change.

Along with the gluten, dairy, additives, preservatives, sugars and saturated fats, we also removed soy and nut products - foods which tests showed that Jack was having reactions to.  Jack was also prescribed very specific nutritional supplements that were to replace what his body was lacking, and also improve brain function.  We were also instructed to increase certain foods in his diet, such as fresh fruit and vegetables, fish and other omega 3 enriched products.

The first few weeks of the diet change were a nightmare in that we fought with Jack over everything he ate.  At first he wouldn’t touch the ‘new’ food that we prepared, in fact he totally refused many things and we had plenty of violent outbursts.  Yes, we could have taken it slowly but we really needed just to make the change and deal with it.  It was one of those things - we could have aggressive behaviour as a result of him eating food that was having a negative effect on him, or we could have aggressive behaviour as a lashing out at change.  We went for the change option - we figured that sooner or later the storm would calm a little.  And it did.

Within a couple of weeks things settled down and we started to see a really different side of Jack.  He became easier to deal with, he became less aggressive and the hyperactivity certainly settled somewhat.  We all adjusted to the diet, and these days, Jack doesn’t even blink an eye over the food he eats.

The diet certainly was a good start to improving his behaviour.

With such severe restrictions on what he couldn’t eat, we have to admit it was extremely difficult finding pre-prepared foods or even recipes that catered to his dietary requirements.  We spent a great deal of time experimenting and hunting down products and ingredients, and eventually managed to replace bread, biscuits, cakes and other foods with Jack friendly versions.  Over time you will find some of these recipes here on our blog, and even if you don’t go down the road of having your child’s diet completely overhauled, we’re sure you will still find some of the recipe ideas enjoyable for your family.  And by the way, these recipes are also perfect for children with ADHD!

There is much discussion about the effectiveness of a special autism diet.  As the parent of an autistic child, you may have considered it in order to help improve the brain functioning and development of your child. While many conventional doctors don’t usually recommend a special diet for an autistic child, there is plenty of evidence indicating that a special diet can actually reduce the symptoms of autism for your child.  We have found that changing Jack’s diet has made a huge difference in his life.

Most commonly, an autism diet is a casein-free and gluten-free diet. This simply means that you need to eliminate dairy products (casein) and wheat products (gluten) from your child’s diet.  If you’re anything like us, your first thought will be that this severely restricts the choice of foods for your child. It is true that implementing an autism diet requires a lot of determination and hard work because you may need to do more home cooking, but the results are often well worth the effort.

If you decide to put your child on a gluten-free and casein-free diet, there are still plenty of things that they can eat. Fresh fruits and vegetables are great for a start - and often in western culture we don’t eat enough of these anyway. You may need to spend some time sourcing foods that don’t contain dairy or wheat, but once you start looking you will find there are many options available that are pre-prepared for purchase (the good news is, gluten-free products are becoming more widely available with increasing numbers of people being diagnosed with celiac disease).  Alternatively, you could prepare things at home yourself.  (See our list of recipe and pre-prepared product ideas.)

The nature of autism itself can make a diet change difficult.  When changing your child’s diet to gluten-free and casein-free, you will need to make the decision to either jump right in or to ease your child into it slowly.  When we changed Jack’s diet we went cold turkey on all his old foods, clearing the pantry and only making the new options available.  The first few weeks were incredibly difficult - we were faced with extreme behaviour and mood swings as he detoxed and adjusted to the new ‘menu’, but then life began to improve somewhat.

If you can manage it, it may even be worth considering putting the entire family on the diet (yes we did this, although we have to confess we did smuggle a few ‘when the kids are asleep’ snacks into the house).  Your child will feel less alienated as the whole family is changing together, you will be able to keep food preparation simple, and you just might find yourself feeling some positive benefits as well.

It is important that you observe your child’s reactions to this special diet, and note down any changes.  Keep records in regard to the food your child eats and take periodic reviews to see if there are any improvements in his or her symptoms or behaviours.  The diet may not be for everyone, and even after giving it a try, you may find that it makes no difference in your child’s life.  We can only draw on our own experiences with Jack and for us it has been well worth making the change.

Here is an interesting link that discusses leaky gut - the reason for the gluten and casein free diet:  http://mothers-reversing-autism.com/Leaky-Gut.html