Managing Autism - A Personal View

You think you know the faces of AUTISM??IDENTIFIED

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Thought I’d kick start the new year with a video post. Interesting to think about some of these people and what they have achieved… One day it may be Jack and many of your kids on this video!

Steve

We often wonder about Jack’s mind - what it takes in and what it filters out…

… and it seems that whatever it takes in, it does so in fine detail, and in a way that is totally focussed… take lions for example…

We’ve written about Jack’s interest in lions before.  Jack loves lions and he can pick one from anywhere.  Big lions, small lions, lion toys, lion stickers, lion shadows - you name it, if it resembles a lion in any way, he’ll notice, and he’ll stop to look at it and study it in fine detail.

We have a house full of lions (not the real ones thankfully!) and Jack personally knows each and every lion that he has, and how they are alike and how they are different.

Jack will draw pictures of lions over and over again.  (In fact, if Jack draws a picture we can pretty much guarantee it will either be a picture of our family, or a picture of a lion.)  If you sit to draw lions with Jack he will pull you up on your detail if it’s not right, and he will give you blow by blow explanations as to what lions look like, do and have.

We have clay lions and playdough lions.  We have lion caves made from boxes, and lion food made from paper (cut and scrunched up in a very particular way).  Sometimes it seems like lion creations are taking over the house!!

Jack is very particular about the sound of a lions roar.  If you happen to play lion roars with him, he will correct you if you don’t get the tone and balance of the sound just right.  And the lion ‘walk’ is a skill in itself to master - your paws must flex and your back must arch in a certain way, and goodness help you if you just ‘leap’ without mastering a lion’s leaping precision.

‘Lion Boy’ is an affectionate name we have for Jack…

Lions are his thing… his focus…

For Jack, if lions are concerned, you couldn’t get any better attention to detail…

When people initially hear the word autism, it is often the more classic form of autism that they associate with.  From our experience it is uncommon for people to link autism to it’s higher functioning forms, or even recognise that autism covers a range of conditions across a spectrum.

Jack’s diagnosis sits most comfortably with the condition known as Aspergers Syndrome.  In one of our very early posts we discuss Jack’s diagnosis and how his characteristics fit into the autism spectrum.

Jack’s diagnosis was made during his year at Preschool, after we had already delayed his Preschool year due to his need for further social and emotional development.  Looking back we started to see the signs very early on.  But whilst we recognised differences in Jack’s development compared to other children, we really didn’t make any connection to a condition of any sort until things got to breaking point with how he was coping in his every day environment.  And even then we only made a connection to autism because we really ‘pushed hard’ for answers.

An article we found in the American Chronicle outlines the signs of Aspergers Syndrome, and comments on the fact that often Aspergers Syndrome is first noticed when a child starts school.  We ourselves were able to associate with this, and we felt that maybe this is because of the fact that Aspergers sits at the high functioning end of the autism spectrum and is such an ‘unknown’ in the wider community.

We still struggle all the time trying to get people to understand the condition, and we wonder at just how often this condition is overlooked in the community and school systems simply because people aren’t aware that it exists, or if they do know of Aspergers Syndrome they find it difficult to recognise the signs.

Before Jack’s diagnosis we had come up against people simply telling us that there were ‘behavioural and hyperactivity issues’.  Now we can see Jack for who he is - but how many other children may also be facing ‘behavioural and hyperativity issues’ without people really understanding the depth of the child.

It is our hope that one day people will not only understand autism for what it is - but also understand the spectrum as it is, and all that it presents us with.

Aspergers traits have been in full swing this week as we rapidly approach the peak of what is often referred to as the ‘Silly Season’ (what we better know as Christmas).  As things have been getting a little more hectic we’ve seen quite a lot of hand waving whilst talking, more intense talking and questioning (as well as the ‘mechanical’ robot voice every now and again), and more intense emotional ups and downs.  We’re also being held to strict timetables with Jack watching the clock continuously and keeping us on our toes with our schedules.  Structured activities have been a must for this week!!!

We’re pleased to say that we learned our lesson from the Kindergarten Christmas Party, and as a result avoided 2 potentially challenging parties this week (Steve took Anna to her creche Christmas Party on her own, and we made the decision that Steve would attend his company Christmas Party without the rest of us - excellent decision making we must say!!!)

We have recovered from the tears of the Kindergarten Goodbye (although Jack is still asking us when the next Kinder day is) and we also welcomed Jack’s new teacher to our home for a visit this week.  We already feel very blessed with having her as Jack’s teacher - she has been really keen to get to know Jack and his interests, and has been working very hard preparing the way for him to start school next year.

We chatted with Jack’s PreSchool Field Worker this week (thankfully we don’t have to say goodbye to her until the end of the first term of school when she has to close Jack’s file) and she is delighted with how he has progressed and in her words she expressed that ”I think Jack might just surprise us next year”.  I’m really hoping he will!  With all the hard work we have done this year in terms of paving his way for the coming few months, it would be lovely to see it all pay off and him thriving in a supportive school environment.

So to finish this week we thought we’d share some pictures of Steve and the kids having ‘drawing’ time.

Hope you all have a lovely week to come!!!

Elissa & Steve

If…….

(This was the last song recorded at Purple Pro Audio Studio in Leeds by Leeds Asperger Adults in 2006. The aim is to raise awareness of Asperger Syndrome in Leeds.)

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We found this great video the other day, and had to share it with you all.  We think it says so much about our beautiful kids - all they want and all they need!  Enjoy!

PS - We’d like to run a series of people’s favourite video’s raising awareness of autism.  If you have one or know of one (or more!!!), please copy the link into the comments for us (with a little explanation) and we will share it on our blog.

“I am going completely out of my mind!.. Does your child sleep?”  These were often the words out of my mouth when Jack was younger.  Even as a baby, for Jack, sleep was hard to come by.  And if we were able to settle him into some sort of sleep routine it would only take some very small change in routine or environment to completely throw him off sleep again…

My Mum nicknamed him “Half hour Jack”.  This was about the extent of his sleep time before his eyes would pop open, and he’d be ready to go again!

I used to wonder what I was doing wrong.  Other mothers that I spoke to would agree with the fact that babies are often very difficult to settle, but never to the extent that I would experience.

As Jack grew older things became a little easier, but to this day we still have many nightime wake-ups and difficulties falling asleep (especially if out of routine!!!)

I came across a really interesting news article the other day about a study on the sleep problems of children with Asperger Syndrome.  Many of the results rang true for us (the falling asleep ’sweating’ for instance), and the tips to help Aspergers children with sleep were helpful.  Check it out and let us know what you think!

Elissa

children with asperger syndrome more likely to have sleep problems

Medical News Today (press release) - UK
the first known attempt to evaluate the sleep patterns of children with asperger syndrome (as), taking into account sleep architecture and the cyclic …

We posted recently about literal language and the difficulties that people with autism face trying to negotiate language, and just yesterday, we posted about the struggles that people with autism face navigating their way around social cues.

Jack had a conversation with his Uncle Mike yesterday that we could see left his head spinning - and once we worked out the basis of the conversation, there was no wondering why!  The two of them were discussing Jack’s toy car.

“The car has Hub Flaps” Jack announced as he disected his ‘dismantable’ toy car.

“Hub Flaps or Mud Flaps?” asked Mike.

“Hub Flaps” said Jack with certainty.

“Oh of course!” said Mike, “I forgot that hubs have flaps and and that mud has caps - on the wheel.”

Jack looked at Mike a little unsure.  “Hub Flaps here and Mud Caps here” he said pointing to the different parts of the car.

“Yes, that’s right,” said Mike, “Hub Caps, no I mean Hub Flaps and the Caps Flaps keep the mud off.”

At this point Jack’s head went down with all focus on the car.

“Hub Flaps” he said carefully.  Then for a few moments he said nothing more.  Then he looked up at Mike and said, “I think I’ll just leave those bits off the car.”

Looking on from the outside, it was just too confusing.  Not only had Jack lost all sense of what was happening, but Mike was starting to question his own line of thinking!

We laughed at them both, commented that Mike was being silly, and moved on in conversation.

A total language breakdown, yes, but at least there was no meltdown over it!!!

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…

Autism often receives much negative ‘press’ (so to speak) so today we want to give gratitude for some of the wonderful things that autism has brought to our lives.

1. Autism has shown us a different view of the world, that we would never have otherwise had the opportunity to experience.
2. Autism has brought us closer together as a family - we have had to overcome struggles together, and learn different ways of communicating and developing with each other.
3. Autism has given us a greater understanding of some of the challenges faced by many people all over the world - we are definitely not alone!
4. Autism has given us the opportunity to develop a greater sense of tolerance, understanding and acceptance of others and ourselves.
5. Through having autism as a part of our lives we have had the opportunity to meet some amazing people and hear and learn about many wonderful things that others give to our world.

We are lucky to have autism in our lives.  We are not disregarding the fact that there are always challenges that come as part of the package, but who we are as people is so much richer because of it.

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.