Managing Autism - A Personal View

We made the decision a couple of weeks ago (for a number of reasons) that we were going to sell our house and move.  After a ‘mini makeover’ and a spring clean, the sales campaign is now up and running - much to Jack’s disgust.

Jack isn’t big on surprises (especially when they relate to change) so we decided it was best to explain what was happening right from the start.  He seemed to take to the idea to begin with and then the anxiety set in after he had processed it for a while.  He says he doesn’t want to move, and if he really has to then we need to take our house with us to a new block of land.

We are struggling with ideas on how to help him get comfortable with the move.  We have talked about the fact that we take all our belongings, and that we all go but he just puts up a fight over it.

The trouble is that we’re not sure where we are moving to yet so we can’t give him a definite plan.  Soon enough things will be a lot clearer, but for the mean time we are now trying to avoid the topic unless absolutely necessary.

Sometimes you think you are doing the right thing (in explaining early on what is happening), but what has always worked before may just not this time.  Oh the joys of it all!

You will need:

2 cups of chunky melon pieces (large cubes)

3/4 cup desiccated coconut

• Coat the melon pieces in the coconut and chill until ready to serve.

A simple but healthy idea, makes an ideal summer snack or party treat that the kids can help prepare!

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

Lion Boy - yes, this is how we often affectionately refer to Jack.  You see, lions are his ‘thing’, his interest, or focus you could say.  A common thread with people having ASD is that they have an interest that is quite obsessive.  With Jack, tigers get a look in too, but the lion is the king of his world.

In our house we enjoy daily viewings of the movie The Lion King.  In fact, if we miss a day (when we refuse to allow it on the television one more time!) Jack simply replays a live version for us.  And we always know where to find Jack when he is playing outside - there are dirt hills in the vacant block next door to us, and without a doubt Mufasa (Jack) will be trying to scramble to the top yelling ‘Scar, help me’!

Jack’s kindergarten recently had to invest in new animal figurines - particularly lions and tigers.  We didn’t ask why, we had a fairly good idea that Jack had probably worn the old one’s out.

Whilst Jack’s ‘thing’ can be extremely frustrating (like when he roars his way around the shopping centre, and leaps his way around the house, wanting his food in a bowl on the floor like our cat), it could be worse.  We have heard stories of autistic children being obsessed with bringing home strangers, or being obsessed with ‘escaping’.  At least the jungle is fairly containable - for now anyway!

Autism is steadily increasing as a reality for more and more families, with growing numbers of children being diagnosed with the disorder all the time.  The current figure being around one in every 150 children.

Autism covers a spectrum of conditions (hence the term Autism Spectrum Disorder).  Classic autism is often easy to pick and therefore diagnosed very early, but other types of autism might be harder to pinpoint.  However there are some basic signs that parents can look for during the early years of life if they suspect something might be different with their child.

• The child may display difficulties with behaviors such as eye-to-eye contact, facial expression, body postures, and other gestures required for social interaction.  They may fail to develop peer relationships appropriate to developmental level and there may be a lack of seeking to share enjoyment, interests, or achievements with other people.  The child may also prefer to be alone or may not respond to others emotionally.
• The child may be delayed, or totally lacking in the development of spoken language.  Children who develop adequate speech, may struggle to initiate or sustain a conversation with others.  They may use stereotyped and repetitive language or odd language.  The child may find varied, spontaneous make-believe play difficult (or it may be non-existant) or their social play may be inappropriate to developmental level.
• The child may be totally preoccupied with one or more restricted pattern of interest - the interest would be abnormally intense or focussed.  They may lack interest in the typical things that children their age would likely be involved or interested in.
• The child may have specific routines or rituals and be very inflexible to change (change often resulting in tantrums).
• The child may display repetitive motor mannerisms such as hand or finger flapping or twisting, or complex whole-body movements.  They may also display patterned manipulation of toys, or perhaps preoccupation with parts of objects.
• The child may react unusually to stimulus. The reaction could be either overly severe or there may be no reaction at all.
• The older child will generally have a short attention span, and is often uninterested in pleasing the teacher at school.

The degree to which children display the signs outlined vary significantly.  And regardless of when parents notice that a child has some of the signs, it is important to seek help from a medical professional qualified to give a diagnosis.

There are many programs and treatments available that can help autistic children overcome some of the difficulties they face, and the earlier this is noticed and diagnosed the better.  Early diagnosis and treatment will often lead to a happier and healthier lifestyle for all.

It is often difficult for ‘typical’ people to really understand what autism is like.  For adults, as well as siblings and friends of an autistic child, it can be very frustrating not understanding, and not knowing what to do or how to interact with the child.

It is important that children be given an explanation as why their autistic sibling or friend behaves the way they do, and what might be the best way to interact with them.

Some of the common behaviours that children may have trouble understanding about their autistic sibling or friend are such things as:

• An autistic child may have trouble talking and may make strange sounds, or they may not talk at all.
• They may flap their hands, spin, or laugh a lot.
• They may use inappropriate language or words in an inappropriate manner.
• They may behave or play in unusual ways.
• They may be very active or be very quiet and like to spend time alone.
• They may have trouble looking directly at you.
• They may say the same things over and over.

Some important points to discuss with children in relation to autism are as follows:

• Children with autism sometimes have a difficult time understanding what we say or what our facial and body expressions mean. You should not just stop trying to communicate with them because of this. Try showing them a picture or an object to help them understand things better. For example, if you are talking about a past event, show them a photo to help them understand your story.  If you are asking them a question about something, try and visually point out what you are asking about.
• Children with autism, like all people, can get frustrated and angry. The difference is most often they cannot tell us why they are frustrated or angry.  They may use actions instead of words to express their feelings.  Again, visual cues can be good to help them through a frustrating situation.
• A child with autism may make noises or spin around when he or she becomes upset, confused, or bored. When they are excited or happy they may flap their hands, jump up and down, or run in circles.  This is okay, as long as we understand what is happening.
• When surroundings or schedules change and/or things become different, many children with autism get upset. They may start to cry, hold their hands over their ears, run away or behave in other inappropriate ways. Children with autism cope best with routine.  It is a good idea to tell your autistic sibling or friend about a change before it happens, this means they can start to process the change in advance.
• No one knows why some people have autism. There may be many different causes. Researchers continue to study and try to find out just what the causes of autism are and how best to help people with autism.
• Kids with autism may be a member of your class or may be in a classroom that was set up especially for them. Some children with autism go to different schools; however, more and more children with autism today can go to regular schools and participate in after-school activities with classmates, friends and neighbours.
• Special arrangements may be used in classrooms to help a classmate with autism participate in the class. He or she may even have a special coach sit at their desk or table. He or she may use picture symbols to communicate with classmates and the teacher. There is special computer software that can “talk” for a child with autism. The absolute best way for you to deal with a classmate, a friend or sibling with autism is to remain “friendly.”
• Autism is not a disease that is contagious. Others cannot catch autism from a classmate, friend or sibling.

For children, becoming a friend to a child with autism can be a rewarding and learning experience for everyone involved. The following are some suggestions for supporting friendships with an autistic child:

• Accept the differences.
• Protect your friend from things that bother him or her.
• Talk to a child with autism in short sentences and use simple words with lots of gestures.
• Use pictures or write down what you want to say to your friend who has autism to help him or her understand you better.
• Join your friend who has autism in activities that interest him or her.
• Be patient and understand that your friend does not mean to bother you or others.
• Invite your friend who has autism to play with you and to join you in group activities - but don’t feel disappointed if they say no, they may just prefer to be by themselves.
• Sit near your friend who has autism, and help him or her do things if they want you to.
• Help other kids learn about autism by telling them about your friend.

Autism is still very misunderstood in society. By assisting children in understanding what autism is all about not only are we helping them, but there is sure to be a flow on effect to the adult population - and no doubt over time we will see generally a more understanding and accepting attitude towards people with autism.

We found the following article really interesting: 

There have been many conditions thought history that have been mistaken for something else, and before the human mind was understood, many with mental disabilities were placed in jail. They were deemed a threat and were then heavily medicated. Today, we have a greater understanding of what some people go through, and although different from everyone else, we know there is an underlying reason for it. We now do our best to help people like this instead of persecuting them. When looking back through the history of autism, it is obvious that though it was given a name in the early part of the 1900s, it was largely misunderstood by people for a long time.

Some believe that autism was first noticed as a condition around 1911, but it wasn’t really anything other than a theory at that time. A Swiss psychiatrist by the name of Eugen Bleuler is thought to be the first to use the term. The word ‘autism’ meant ‘an escape from reality’ and was based on behaviors he observed in adults and it was attributed to schizophrenia. Though that was false and misleading, it was a step closer to putting a name to a condition that was largely misunderstood.

New information was found from one of the earliest recorded studies of children with autism. From 1938 to the year 1943, a doctor by the name of Leo Kanner studied the behaviors of eleven autistic children. The children he chose to study were ones that seem to withdraw from interaction with others as early as age one. The type of autism that he recorded and named was what would be considered ‘classic autism’ and is often referred to as Kanner’s Syndrome.

These children were thought to have different characteristics than those classified as mentally retarded. However, at this time it was still largely misunderstood. Some believed parents were to blame, and these children were often removed from the home and placed with others to see if they would ‘recover.’

It wasn’t until the 1960s when the disorder was finally being studied and understood for what it really is and the impacts it has on a person. The finger pointing at parents of autistic children reduced as understanding grew, but there was and still is in some cases a lot of misinformation about autism, and many parents feel the need to defend themselves, as if they’ve ‘done something’ to their child.

Higher functioning autistic children and adults are often said to have Asperger’s. This condition was documented by Hans Asperger in 1944, but was not something that gained wider awareness until later in the 1980s. He described this condition as ‘autistic psychopaths’ and some of the blame was put on the mothers of these children, claiming that they were cold and heartless. Though we know today that this is not true, it was widely accepted at the time.

Since then, PDD (pervasive development disorder) has been studied and is now more understood. PDD is a blanket term for the spectrum of autistic disorders that are now known today.

The history of autism is a rough one, but that can be said about many of the conditions that affect the mind and the personality. Though more understanding exists today, there is much that is still misunderstood.

Perhaps the most important thing is that parents are no longer blamed for the conditions of autism, and that more treatments are available to help a child with this condition. Recently thinking suggests Autism is an auto-immune condition, and that it can be genetic. There is no cure, but there are programs that can increase communication and socialization skills in some children and adults.

Hopefully by understanding the history of autism we can take steps to progress treatment programs further.

Article Source: http://EzineArticles.com/?expert=Rachel_Evans

Jack fits the criteria for Asperger’s Syndrome - he is considered ‘active but odd’.  In line with this definition, Jack will initiate interactions with others but in an odd, repetitive and often inappropriate way.

Jack’s play is repetitive and predictable, rather than imaginative.  He plays out the same scenarios over and over again, and only with familiar toys and objects.  If he initiates play with other children it is usually as a lion or a dog (his particular area of interest).  When interacting with others he doesn’t often hold eye contact unless he is involved in a topic of his interest.

Jack uses language on his terms, talking ’at’ people rather than with them.  He takes language literally, and often needs time to process language before gaining a real understanding of what is being said.  His language is repetitive and often inappropriate.  He is usually oblivious to other people’s body language and the non-verbal information in the environment.  Jack doesn’t cope well with unfamiliar people, becoming aggressive and non-verbal. 

Jack’s general behaviour is repetitive and obsessive.  He loves procedure, routine, pattern and rules, and doesn’t cope unless he has control of his environment (again becoming aggressive and non-verbal when things don’t go as he plans).  His thoughts and interests are concrete and rigid, and he is overly sensitive to many noises, smells and textures.

We don’t know what life will hold for Jack.  To look at him you would think he were a typical child, but get to know him and you will find a different story.

One thing is for sure, Jack has incredible focus, an incredible sense of determination and a very big heart.  We have very quickly learnt that Jack will determine his own path in life, though as with any child we’re sure that it will be a rollercoaster ride and a very steep learning curve for all of us along the way.

Whenever we stop to think about where this all began we find it difficult to pin point exactly how life became what we know it as today.  Our guess is that it started the moment Jack was born.  After what was a very difficult and long pregnancy, we were both relieved and delighted to welcome our beautiful boy into the world.

Life with a newborn wasn’t what we had imagined (as most new parents would agree!) and we struggled with a baby who slept very little and didn’t feed well.  Jack was ‘on the go’ right from the beginning and wanted constant attention.  If we managed to find a routine that worked for a couple of weeks we were okay but then something would change and Jack would be terribly unsettled until we found a routine that worked again.  Life with Jack was always very intense and unpredictable.

As Jack grew older he met his milestones, crawling, walking and speaking when he was supposed to, but he was always extremely active and ‘intense’ in his behaviours.  He just didn’t stop.  We would often comment that Jack either slept or ran - that there was no in between.

Socially, Jack seemed to be able to play alongside other children, but it never really occured to us that he was only interested in playing if he could be totally in control of the game and if the game was focussed on his interests.  If Jack could not play his way he would (and still does) tantrum and spoil the game or become aggressive with the other children playing.  This became very difficult in social situations, and it got to the point where we would (and still do) avoid social gatherings because of his behaviour.

Over time, it was Jack’s social behaviour that really caused alarm bells to ring for us.  Whilst other children his age were developing social and age appropriate play skills, Jack struggled.  In fact, it almost seemed like there was a missing link in this area.

When our daughter Anna was born, Jack was three years old, and it was at this point that we realised that he was different.  As time went on, many of the struggles that we had faced with Jack just didn’t arise with Anna.  We knew that we were parenting the same way - there was just a difference in our children.

The years of kindergarten and creche (child care) were times of anxiety and frustration for us, as these places only emphasised Jack’s behaviours and developmental delays.  Creche was always a busy place, with many staff and a changing environment.  The staff did their best but struggled with Jack and it seemed a session didn’t go by where (acting from anxiety) he wasn’t either physically and verbally aggressive with those around him.  Our breaking point, and I guess our realisation that we could no longer simply say “he’ll grow out of it” was after a particularly ‘bad’ day at creche where Jack had an altercation with a staff member that left us feeling very let down and as a result we withdrew him from the centre.

Although Jack struggled with kindergarten, it was in fact almost a sanctuary for all of us.  He was part of a small group of children, in a very calming and ’same’ environment.  It was Jack’s kindergarten teacher who helped us through the decision to delay his school entry by a year - until he was socially and emotionally ready.

The withdrawal from his two days of creche coincided with a new year of kindergarten and it was at this time that we decided we needed professional help.  From here it took us about 8 months of assessments with specialists to finally come to Jack’s diagnosis of an Autistic Spectrum Disorder.

This in itself was a journey of courage.  ‘Tests’ became a part of our lives - a myriad of blood and urine tests, a brain map, attention tests, psychological tests, intelligence testing, and neurotherapy sessions (more about this in a later post).  Jack had his normal ups and downs over this time, but every test seemed to add to his anxiety and general feeling of being invaded.  Over the course of these few months we often felt hung out to dry with emotional exhaustion, particularly following the parent interviews with each specialist, continually recounting Jack’s history and the story of his life.  The waiting for each result brought with it anxiety.  And the travel … we live in a rural area, three hours away from the closest major city (and of course specialists).  We certainly covered some distance over this time.

What began with an assessment for ADHD (this was the first condition that was suspected due to his hyperactive behaviours) finally came to an end with a psychological assessment of ASD.  A relief certainly, at least now we had something to work with.

Our journey continues from here…