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.

Choosing Gifts for Children with Autism

We found this article today that had a few helpful tips for people looking to buy a gift for an autistic child.  We thought it could be useful as we hit peak ‘gift giving’ time.

Over time, parents of autistic children will adapt to their child’s likes and dislikes in regard to ‘presents’ and ‘gifts’ - for many it’s a matter of trial and error in working out what ‘works’ for their child.  But for families and friends looking to buy gifts during the holiday season, a few tips or hints never go astray!!!

To ensure ‘gift giving’ is a successful event for an autistic child, one of the best things that family members and friends can do is to first talk to the child’s parents, and get a feel for what will work best with the child.

As an important tip for a gift bearer - an autistic child is unlikely to receive a gift in a similar manner to a ‘typical’ child.  From our personal experience we have seen many disappointed faces of well meaning gift bearers who want nothing more than to see excitement as their gift is opened.  Although hurt feelings are difficult to avoid when a child throws a present away unopened, or opens a present but then turns their attention back to something of greater interest to them, or opens a gift but then just stares blankly at it, it is vital to remember that these reactions are normal for autistic children, and are in no way intended to hurt or upset anyone.

PS - And if an older child has more interest in the paper than the gift - that’s normal too!!!

I read a fabulous article yesterday, titled “Courageous kids on film“.  It caught my attention because the first line of the article made a statement about it taking ’courage’ to face the world with Aspergers Syndrome.

The article then went on to outline the launch of a short film highlighting and celebrating the stories of children with the condition.  The film came as a result of a number of workshops that were held to investigate some of the challenges that Aspergers kids face.

I was delighted to think that such a film had been produced.  I have posted before about the need to highlight and celebrate the wonderful things about our kids with autism spectrum disorders, and this film is definitely a wonderful contribution to raising positive awareness in our society.

On that note, I’d like to share a story of Jack’s courage recently - not a big ground breaking moment for most kids, but for Jack, it was huge…

Jack had his final orientation day at school last week, in preparation for next year.  The first 2 orientation days had been really successful; they had been for around 2 hours a visit, and although there were a few challenging moments, Jack had coped really well with everything going on around him.

The evening before his final orientation day Steve and I had been to a meeting at the school for a final rundown on some of the details for next year.  During this meeting we discovered that although we had requested Jack be placed in a class with his Kinder friend, they had been placed in separate classes (a little boy who he had been very attached to during the ‘getting ready for school’ process, and whose presence we felt would help Jack make a smooth transition to school).  So the trip home for Steve and I was filled with anxiety as we contemplated how we would break the news.

Jack was devastated with news, as we had anticipated.  After the tantrum, and the ’hurt’ and ’sad’ tears, we had ‘angry’ tears, with the question asked continually ”why would they do this to me?”.  I struggled to fight the tears myself and for a while he just let me cuddle him to me like a baby.  He was scared, and I was feeling scared for him.  Steve (thank goodness he is very practical) managed to bring the focus back to the more positive things about the day to come, and finally we got him to sleep.

The next morning went quite quickly, getting ready for school.  We were finally ready to go when I discovered Jack had gone missing.  Annie and I searched the house, only to find him hiding under a table - the news had hit him again, and he didn’t want to go.  So we spent a while talking, and I convinced him that even though he wouldn’t be in the same room as his friend, it might be worth still giving school a go.  Ten minutes later and we were in the car, and off to school.

This is where Jack’s moment of courage comes in.  We arrived at the school, me feeling sick to the stomach with anxiety, and Jack quite subdued.  We got out of the car, and Jack turned to me and said, “It doesn’t matter Mum, it’ll be okay, I can play with …. at our break time”.  My eyes filled with tears under my sunglasses as he let me hug him.  At that moment I was very proud.  As I said above, not a ground breaking moment for most kids, but a huge moment of courage for Jack.

Elissa

PS - We would love to hear about other fabulous moments of ASD courage…..

Oh, and yes, Jack’s day went well - and he did seek out his friend at break time.

“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 were delighted to hear this ‘breaking news’ in Australia today:

PM unveils help plan for autism families

Wednesday Oct 3 11:20 AEST

The Howard government will on Wednesday announce a funding package to aid the parents of autistic children.

The package will be announced in a series of coordinated launches involving senior ministers across the country, including Prime Minister John Howard, who is on the Gold Coast.

Read more on this story at : http://news.ninemsn.com.au/article.aspx?id=84226

Despite the usual political comments back and forth between parties, claiming one’s policy is better than the other, it’s great news for Australian families.

Steve & Elissa.