Thursday, April 3, 2014

How to do more for families with autism than just being "aware" of it.

The idea of an Autism "Awareness" day is fraught with problems. It suggests that people aren't even aware that autism exists, It's a very scary thought. It puts autism far behind most other forms of  disability.  There is no problem with the acceptance of blindness or deafness, of people with missing or damaged limbs or indeed, of most other mental and physical conditions. 

People have no difficulty believing in "invisible" (at first) issues like cancer, AIDS or MS but for some reason, the entire autism spectrum is subject to scrutiny. Everything from ADHD, to Aspergers to Autism is disbelieved.

Raising Awareness and Blue Light Bulbs
Raising awareness is a nice little idea which effectively means that people get to post little blue statuses or celebrate recognition because they've lobbied to light up national monuments in blue. The problem is that raising awareness of a condition does very little to improve the live of the people who live with it on a daily basis. In fact, in many ways, it could make things worse.

One could argue that raising awareness does less to help people understand about autism and does more to make people aware that there is "yet another group of individuals lobbying the government for handouts". In that sense, maybe raising awareness is not such a good thing.  

Raising Awareness for the Right Reasons
I guess that you could say that raising awareness is an obvious first step but repeating the "awareness" exercise year after year does very little to address the problems. Once awareness has been raised, it's time to move on to other levels of engagement, like recognition, acceptance, then support and finally to issues of equality and sensitivity.

Hopefully I'll get the chance to cover some of those things in other posts.  Right now, I'm still trying to put the concept of "awareness" to bed.

Getting Awareness Right
My point about awareness is that if you're not doing it right, then you probably shouldn't be doing it at all. Raising awareness in a negative manner helps nobody and usually causes significant damage.

At best, poor awareness campaigns simply end up directing funds into the wrong pockets.  At worst, they can turn the tide of public opinion against people with autism, can kick-start campaigns to strip away the rights of those with autism and can lead to "bad science" where anything from food allergies to radiation to immunisation and even to "poor parenting" can be considered to be a cause.

Raising awareness - of anything, not just autism, is all about marketing. There needs to be a clear aim to the marketing (hint: it's not to "raise awareness") and there needs to be a target audience (again, not just "anyone"). Without these, anything "spent" on awareness is good time and money down the drain.

Then there's the message.  It can't simply be that "there is this thing called autism". It needs to be far wider than that. If your aim is to educate people then you need to have decided upon exactly what they need to learn. That message needs to be backed up by industry experts and really, for maximum impact, it needs to be supported within the autism community.

What to do for the Blue Day/Month
The current "autism awareness" projects satisfy none of these criteria. They're poor exercises in marketing which benefit nobody.  At some point, I'm sure that the autistic community will sort out a proper autism campaign but in the meantime, here's a few tips straight from my 2013 blue day post;

Don't give any money away, give time instead;

  1. Time spent encouraging or motivating a person with autism.
  2. Time spent giving someone a chance in a job interview
  3. If you're a teacher, Time spent, talking to the class about the positives of autism 
  4. Time spent, providing support to a family with a member with autism (maybe babysitting?)
  5. Time spent as a friend with someone with autism
  6. Time spent, listening to someone with autism

These things cost nothing but they will mean so much more to your "target family" than anything spent on autism "research". You may even find that you get so much back out of the experience that you want to do it more often.

Monday, March 24, 2014

Article: Detect and Deal with Anxiety (on Special-ism)

My latest article on Special-ism which went live about a week or two ago (I've been very busy, sorry) is all about Anxiety.  

Following my review of Dr Edward Aull's book "The Parent's Guide to the Medical World of Autism", last month, I turned my thoughts to Anxiety and the different ways in which it manifests in children and adults. I also thought about the different ways that we deal with anxiety.

Head over to Special-ism to have a read;

Detect and Deal with Anxiety by Gavin Bollard

Also, while you're there, have a look at Kimberley S. Williams article entitled "Invisible Anxiety: Hiding in the Classroom" which lists some common signs to look out for and ways that parents and teachers can get help and reduce anxiety in the classroom.

Sunday, February 16, 2014

Book Review: The Parent's Guide to the Medical World of Autism by Edward Aull, MD

The Parent's Guide to the Medical World of Autism: A Physician Explains Diagnosis, Medications and Treatments by Edward Aull, MD Behavioral Pediatrician.

It was with great trepidation that I approached this book. I knew that it was an important topic but both the title and the cover make it seem like it would be a very tough read. Much to my surprise though, the first half is light and breezy and the second is too informative to put down.

This is essentially two books in one. The first half of the book is about diagnostic procedures while the second is all about medication.

The author, Dr Aull, is a Behavioral Pediatrician with over 30 years of experience treating and diagnosing patients on the autism spectrum. In this book he draws upon his experience to provide many real-world long-term examples of the effects of various medications.

I enjoyed the first half of the book much more than the second because it was much more relatable and because it was far less technical.

Dr Aull talks about the different things that he looks for when patients enter his practice. It was quite interesting to discover that he places such a high emphasis on genetic traits. He talks about observations he makes in a child's parents during the interview and  the questions he asks about the family.

His personal take on Asperger's syndrome is fascinating and he ascribes many of the common symptoms to anxiety, thus increasing the importance of anti-anxiety medications. The book is peppered with stories from his experiences with patients and informed explanations of their "unusual" behavior.

Dr. Aull discusses the importance of fully understanding a diagnosis before prescribing medications and the need to test several medications before settling on one which is most suitable. It was particularly interesting to hear how he uses identical twins to reduce the time required to find the best treatment for a given individual.

The second half of the book is somewhat drier, dealing with medications and specifics. There is no discussion on the issue of whether or not medication is appropriate. The social questions are not part of the book and it is assumed that a parent reading this book is more concerned with choosing the right medication than a debate about whether or not medication is actually required.

The medication chapters discuss different categories of medications and their use in individuals with Asperger's syndrome before moving on to discussions of medications which can assist with ADHD and sleep issues. There is a glossary at the start of the book but it's not really very comprehensive.  It's probably best that when reading this section you draw out a table and put medications into the various categories that he talks about, for easy reference.

Fortunately, he refers to medications by both their class and trade name.  This makes it easier to identify medications you may have tried. There are some amazing insights into medications in this section which include discussions of how often to use them, how long a testing period should take and what changes parents should expect to see.  There is also some discussion on how different medications interact with each other. 

For example; the discussion on Melatonin, a sleep medication, suggests that children should be given 45 minutes of lights out, no object (eg: ipads, books, toys etc) sleep before parents use the drug. Dr Aull also explains that as a "Natural" drug, Melatonin is less rigidly controlled by standards and as a result, different brands will have very different construction and therefore very different effects.  It's all very good information.

A Very Useful Book
The Parent's Guide to the Medical World of Autism is a fascinating read which is presented in a way that makes its complex topic much easier to digest.

If you're considering medications or if your child is already on medication, it's well worth reading. Beyond that, every developmental pediatrician should have copies available in their waiting rooms particularly as the early sections cover many of the questions that are likely to occur to parents only after they have left the doctor's office.

The Parent's Guide to the Medical World of Autism: A Physician Explains Diagnosis, Medications and Treatments by Edward Aull, MD Behavioral Pediatrician is pretty much a one of a kind book that provides some amazing and helpful unbiased insights into medication. It is available from Future Horizons publishing and Amazon.

I was provided with a copy of The Parent's Guide to the Medical World of Autism: A Physician Explains Diagnosis, Medications and Treatments by Edward Aull, MD Behavioral Pediatrician free of charge for review purposes.

Thursday, February 13, 2014

Article: From Fish to Dogs – Selecting a Therapeutic Pet (at Special-ism)

When I was four, my parents got me a border collie cross something (Labrador, I think). It was an inspired decision. Spot became my "everywhere friend" and we had lots of adventures together. In fact, we became inseparable for the next eighteen years.

In the course of those eighteen years, Spot was a comfort, a companion, a friend that I could talk to and a playmate. He acted for my protection against bullies and managed to chase off a few snakes too.  There is no doubt in my mind that my life was much better because of spot.

My next article over at Special-ism all about pets, big and small. Perhaps your special needs child is asking for a pet and you're putting it off because you're not sure whether it would be a good idea?

Did you know that there are service dogs for people with autism? Do you want to know what they do?

Head over to Special-ism to have a read;

From Fish to Dogs – Selecting a Therapeutic Pet

Sunday, February 9, 2014

Aspergers and Bumping into Things.

I'm constantly bumping into things and I often have scrapes and bumps and bruises on my body but can't remember how they got there. It's the same for my kids and it's all to do with spatial awareness.

Spatial awareness, which is often also referred to as motor clumsiness is the ability to think about a figure, usually your own body, in three dimensions. 

Specifically it's about doing the mental calculations required to move your body through spaces without hitting other objects (unless you're hitting them on purpose, as in bat and ball games).  It's not always about your body though because sometimes it's about other moving objects, like catching a ball for instance, or "extended parts" of your body, such as  when moving furniture from one room to another without bumping into walls.

A lack of spacial awareness isn't one on of the defining criteria for autism and indeed I've seen some children on the spectrum with amazing ball control skills.  It is however one of the more common problems I've seen.

Testing for Spacial Awareness Problems
Obviously the easiest of the tests for spacial awareness is to throw a ball to your child and see whether or not he or she can catch it, more than once. In fact, ten times in a row is a good test.  Note that you're throwing the ball to them, not trying to make it difficult to catch.

Ball skills can be learned though, with practice and once your child has mastered these, it doesn't follow that their spacial awareness problems are "fixed", it simply means that they have better ball skills.

Another test is to test your child's ability to make their way through a maze.  Of course, mazes aren't easy to come by (except on paper) so unless you live near one, it's unlikely to be a test you can complete.

There's an online test here which I found very difficult and in which I only scored average. It could account for my poor spatial awareness.  I don't have enough information to say whether it's a good test or not but it is similar to other spatial tests I've seen. I would expect this test to be far too difficult for children.

Improving Spatial Awareness
Your spatial awareness isn't a static skill and even though it's common for people with aspergers to be a little "behind" it's something that can be improved on with a little effort. The best way to improve this skill is to use it. For children, this means getting off the computer and using this skill in real life.

Obstacle courses are a good starting point and you don't have to join the army to use one.  You'll find obstacle courses at scout centers and camp sites and of course, if you're savvy, you can make one yourself. Other things that can help to improve spatial awareness are things like climbing and body awareness sports like Karate.

If nothing else, improving your spatial awareness could save you a few bruises in the future.

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.