Managing Autism - A Personal View

Our living room floor has been taken over today - by Lions!!!

Well, pictures of lions anyway…

At his last therapy session, Jack’s Speech Pathologist printed out a whole lot of lion pictures for Jack to colour in (she is so lovely!!), so he busied himself this morning with colouring.

I made the mistake of asking if I could see one of his pictures that looked like a ‘real’ lion as opposed to a ‘cartoon’.  At first Jack looked at me blankly, and then of course he wanted a full explanation of what I meant.  Since then we have been trying to talk about the differences between pictures that look like ‘real’ lions, and pictures that are more like ‘cartoons’ (yes, very confusing, but he is starting to get the idea of how there are differences).

At Jack’s latest speech therapy session I asked his Speech Pathologist how I might go about trying to get him to understand different voice tones, and whilst it looks like it will be a very long process, we’re about to start working on it here at home.

Hmmm… now how could we relate voice tones to lions…

Anyway, on the topic of lions, Jack has taken to grouping lately (as opposed to lining up) - here is one of his latest groupings… lions of course, with a tiger and a polar bear thrown in for good measure (and no apparently it’s not a vicious attack on the polar bear even though it looks this way - I was a little worried for the bear!!!).

Oh, it really has been a lion of a day!

What Is Autism?

The technical answer to this question is somewhat longwinded and can be rather complicated to explain to someone who knows little about the condition.

And it was interesting to see recently on one of the message boards that we like to visit, that there was a discussion based around how you might explain your child’s condition to someone.

So… What Is Autism?

This question has always been a really tough one for us.  Whilst we ourselves understand what Autism is, and how it relates to Jack, we find it really difficult to put it into a short succinct explanation that people understand and can connect with.

We usually start with the social stuff, as this is what people see when they meet Jack.  We try to explain that Jack sees the social world through different eyes to many people, and that ‘typical’ social settings often make him anxious and quite irritable or stressed.  But for some people even this simple explanation never seems enough - we still have people look at us like they don’t understand.

Then if we ever need to go on to explain sensory issues, or other symptoms to people, it’s an even bigger challenge.

Some people associate their own ‘typical’ child’s behaviour to Jack’s by saying things like “oh yes, my child throws tantrums too when they’re tired”, or “my child doesn’t like shopping much either”, or “my child can be fussy about what they eat”.  But do they really ‘get it’???

So we continue to try and refine our definition and explanation, and when people do understand, it’s like a breath of fresh air to us.

Just maybe, one day we won’t even have to explain…..

But until then, if anyone can help with a short and succinct ‘lay persons’ version of what autism is, we’d really appreciate some input.

It seems a number of our fellow bloggers have been hitting the 100th post milestone lately - and today we join them!

And we thought the perfect way to mark the occasion would be with a lovely uplifting message titled “Mother’s View On Autism”

This video is simple and heartfelt - it is a mother’s message of love and acceptance.

Enjoy!

Elissa & Steve

PS - Spend some time today reflecting on the ‘brightness’ that a person with autism has brought to your life.

According to wikipedia, personal space refers to the space immediately around a person, that they consider their own. 

Two people not affecting each other’s personal space.

Reaction of two people whose personal space are in conflict. (Wikipedia)

It can be difficult to work out Your Own Personal Space - and this can be especially so if you have autistic tendencies and struggle to understand social cues.

Personal Space has been an ongoing battle for us for quite some time - being quite affectionate, Jack struggles to understand the concept of personal space.

Our 2 kids have grown up in an environment where affection is openly displayed - in both our immediate and extended family they are constantly exposed to hugging and friendly pats on the shoulder/back etc.  We consider ourselves blessed that Jack is open to being hugged (although on his terms!) however as he prepares to step into the world of school and broader social contact, the issue of understanding personal space has arisen.

Jack has a habit of grabbing people and hugging them… anyone from the neighbours, to acquaintances, to other children in his Kindergarten class.  As a young child this brought comments of “how cute!” or “what a darling!”, but as he is getting older it is becoming “strange” or “rude”.

We use the idea of an ‘arms length’ distance from people, when trying to explain to Jack about what is an appropriate space to be from someone.  We also talk about the fact that we need to ask someone’s permission before we touch them or ‘go into their space’ but still the concept evades him.

Our social stories have been quite basic in this area to this point so we are about to ’step them up a notch’ and include some role playing (perhaps even video recording the role plays so that he can watch them in action over and over again).

So if anyone has any thoughts or advice on strategies that they have used in this area, or any ideas on things that might work we would love to hear - that is, of course, only if this request doesn’t invade your personal space!!!

It is common for people with autism to either struggle with understanding social cues or to be completely oblivious of them altogether.  Social cues usually require interpretation and have the potential to cause a great deal of anxiety for people with autism (where social development is often delayed).  We had a number of experiences today with Jack that reminded us all too clearly of this fact.

We spent some time outside today playing with some of the children in the street who Jack knows quite well, as well as having my brother and his girlfriend call in for a visit.  Jack coped really well with the extra people around (only a few instances of inappropriate language and head butting/physical outbursts), but a number of times we could see the look of total confusion on his face as he struggled to make sense of what was going on around him.

With Jack being relatively relaxed in his environment we were able to stand back and observe him from a distance, and we could see where he literally stopped what he was doing purely out of confusion as to the social happenings around him.  At times remarks and gestures were made and Jack’s face would go blank as he looked from one person to another.  Sometimes we could see the realisation of what had happened come over his face a couple of minutes later, and sometimes he missed the meaning altogether (then taking some time to get back ‘up to speed’ before rejoining the activity or conversation).

Although there were moments that were difficult for Jack, it was a great opportunity for us to be able to pull him aside and explain some of the things that were happening and what different things meant.  (We don’t often get to do this as we are usually caught up with ‘behavioual stuff’ with him.)  In fact, we could almost see him relax once he had an explanation and was able to understand what was going on around him.

We have now set ourselves the task of spending more time with him on this particular area of development - looks like more role playing and social stories are on the way…

Routines are imperative for people with autism - and Jack is no different.

We have routines in our house for most things, and sleeptime is no exception.  This is where routine really is vital - with no room at all (in Jack’s eyes) for error.

When Jack first gets into bed, the sheets are straightened, with the foldover measured perfectly against his chin.  The sheet must cover his bed to exact standards, with no creases, and definitely no gaps at the sides.  Honeybear (who has been with Jack since birth) takes pride of place with his head on the pillow next to Jack’s.

Songtime comes next.  A tune about Jack being loved and ‘the best boy in the world’ (based on the traditional “3 Little Dicky Birds” that Jack came to depend on as a baby), is sung by Mum, verse by verse (5 in total) whilst his hair is being rubbed firmly.  (Sometimes the hair rubbing is replaced with feet holding or pillow pressure on his body, depending on his mood for the day.  And if Mum is away for the night, Dad needs to call Mum so that she can sing the song over the phone.)

After the song, 3 kisses on the cheek follow with another rub on the forehead and “I love you” said back and forth about a 1/2 dozen times.  The light is always left on and a drink of water must be left next to the bed for ‘just in case’.

The whole routine takes about 5 to 10 minutes to complete - and yes, if for some reason Jack has to get out of bed, the routine starts from scratch!

Then, if he wakes during the night… well, that’s a whole different routine again…

Lines, lines and more lines.

Lines of toys, lines of books, lines of any object at all.

Lines are a common theme for many people with an autism spectrum disorder.  People with autism generally thrive on order and repetition in their lives (which is why structure is so important to them).

It is common to find that children with autism line up their toys, usually in an order that makes sense to them.  (In our house we have lines according to size, or it may be lines according to colour, or lines according to ‘likeness’ of some sort).

Lines are predictable and ordered. 

Lines can bring a sense of comfort and control - they can bring a sense of calm to the craziness and uncertainty of life.

Parenting a child with an Autism Spectrum Disorder can be very intense.  Children with autism have special needs and many require more attention than a ‘typical’ child, and this can be extremely draining on a parent.  Keeping yourself in the best state to cope with the day to day parenting of a child with autism is really important.

Having regular ‘down time’ or time to yourself cannot be overlooked as a coping mechanism.  Whilst it is often difficult to find a replacement carer for a child with autism, it is worth seeking out a family member or friend who is willing to give even an hour or so of their time so as to enable a ‘break’.  We are lucky enough to have family members who take Jack for a ‘holiday’ (weekend) every 4 to 6 weeks just so that we can have a break from the day to day challenges and ‘intensity’ of life with Jack.

A healthy diet and rest is also vital.  Parenting a child with autism will require having plenty of energy and stamina, as these children often need attention around the clock.  Sleep can sometimes be difficult for children with autism - this in turn disturbs the parents sleep period.  For parents of autistic children who do struggle with sleep, rest breaks should be taken where possible and plenty of fresh food should be eaten to keep the body and mind in as best condition as possible.

As a parent of an autistic child, there will always be days that are more difficult than others, and times when things will fall apart.  But finding ways to cope with the day to day parenting of a child with autism is really important, and may help with a smoother transition in getting back on top of things if they do come crashing down around you.

“I need a bit of a kick start.”

“Give me a break.”

“I nearly jumped out of my skin!”

Heard these types of phrases before?  Most of us have, and many of us use these or other similar phrases at times.

People often use words (or language) to imply a meaning that is vastly different to the words literal meaning.  Most of us understand these different meanings and can put the words into context, but to a person with an autism spectrum disorder, this ‘understanding’ can be very difficult.

This is because it is common for people with autism to understand and use language purely in its ‘literal’ sense.

With reference to the 3 phrases above, then, a person with autism may be surprised that you need ‘kicking’ in order to begin something.  And they may be confused that you want to be given something broken.  And they definitely wouldn’t understand how your body could jump out of your skin (and jump back in again - how is this possible?!?).

And for a person with autism, imagine how strange and scary the world would seem if you were brought up to love and care for people, and taught that hurting and killing people is bad, to one day have your mother (who was having a bad day) say, “If you touch that I’ll shoot you!” (When you went to pick up her precious antique china vase that had been in the family for generations.)

Language can be complex, and to many people with autism it can be a struggle.  So when communicating with a person who has autism, choose your words carefully - and if you are receiving blank stares in response to your language, try rephrasing your words or explaining what you mean.

Being understanding and thoughtful with the language you use can go a long way to helping a person with autism feel comfortable in their surroundings and in the social environment.

People with an autism spectrum disorder are often extremely sensitive to pain, or don’t feel it at all.

With Jack, you can never be sure how the ‘wind will blow’, so to speak.  He often head butts and thrashes himself around without feeling a thing, being oblivious to any bruises or ‘hurt’ that occurs as a result.  Cut body parts (especially with blood) however, are a completely different story.

Today Jack was in the garage, attempting to do what he had seen Steve do often, trying to pump up a bicycle tyre.  Unfortunately he had decided to use his hand as opposed to his foot to operate the pump (couldn’t quite get the foot action) and managed to catch his finger in the mechanism and slice the top of it.

From the screams and sheer panic, you would think he had cut his finger off completely.  Not letting me near the finger to check the severity of the damage (though I could see blood pouring everywhere), he screamed and cried continuously whilst I packed he and Anna into the car and drove them to the local emergency department to see a doctor.

The result?  No major damage, in fact, not even worth stitching or glueing (as they do these days).  He let the doctor dress the wound (still not letting me near it) and we drove home, with me feeling like a totally overprotective panicky mother.

I guess it’s better to be safe than sorry though, and I couldn’t have taken much more of the hysterics on my own not knowing if the finger needed attention.

I’m hoping the pain in the finger will subside within a few hours.  I have to smile to myself though, throughout the whole saga, Jack still continued to head butt me and thrash his body around on the furniture in the waiting room at the emergency department.  Like I said above, it’s pain to one extreme or the other!