Changes for Aspergers and Atypical Autism Diagnosis

I don't pretend to know all there is to know about autism. My experience is limited to New South Wales and Australia when it comes to services and funding.

My eldest, Duncan, was diagnosed at 5 1/2 with Aspergers (no surprise there!). My other son, Tristan aged 4, was diagnosed with Atypical autism the same day (a relief not a surprise). It is also called Pervasive Developmental Disorder - Not Otherwise Specified or PDD-NOS. They are both a part of the Spectrum of Autism Disorders.

These diagnoses enabled funding to be unlocked for Early Intervention equipment and services. I am very grateful for that. It meant $12 000 until they turned 7. We used up a lot more EI services for Tristan (Speech, OT, and EI) and mostly equipment for Duncan (sensory tools, slope boards, tripp trapp chairs, ipad). Both the boys are THRIVING NOT JUST SURVIVING in mainstream schooling because of this help.

But now the mechanism for that diagnosis, the DSM - IV is undergoing some serious changes to become the DSM-V, changes that could see that funding denied to many families in our situation with young children. I will not elaborate any more other than pointing you to some terrific commentaries on these changes. 

 DSM-V et al in 'The Conversation' by Andrew Whitehouse 

DSM-5 in 'Australian Doctor' by David Brill

Proposed DSM-5 Changes in 'Autism Support Network' by Michelle Winner

I am not quite sure how these revisions will affect me and the boys personally but it is concerning enough to read up on the topic.

So Astound Me!

Annual Father's Day photo last Sunday

Compassion

Sometimes my son with Asperger's astounds me. Just when I think he is oblivious to the plight of others around him, he will do something so totally lovely as to surprise me completely.

For example, last weekend we had friends over playing on the trampoline. Our neighbour's 9 year old daughter, Maddy, somehow came off the trampoline through the mesh where the door is. She injured her arm. She cried every time she moved it. Fearing a break, I was quick to splint it to a wooden spatula and then put an ice pack onto it.

I sent Duncan over the road to fetch her mum whilst I phoned her up to explain what had happened. Then I watched as Duncan gently put his hand on Maddy's elbow and walk her back home with her mum. A few minutes later he returned and asked me if I could help him retract the stand on her bicycle. Then he wheeled it back across the road for her.

Maybe 5 mins later he asked my husband if he could have two sausage sandwiches to take over so that Maddy and her older brother would have something to eat as they headed off to hospital's Accident and Emergency. It was a 5 hour wait to find that nothing was fractured. We were all relieved.

The next morning, before school, Duncan asked me if he could pop over and see how she was doing.

It melted my heart. 

Bookweek Character Parade - you can see that my boys love the villains

Performance

This week he played violin in his first public performance. It was with the Beginner Strings group during supper at the school's Performing Arts Evening. He was so enthusiastic and it has re-invigorated his interest in the violin. He was going to finish at the end of the year but has now decided to continue tuition so that he can play in next year's Performing Arts Evening. 

Journalism

He has just written his third article for the student newspaper.This one featured the LEGO Tower Bridge that he constructed last holidays from 4000 pieces. He earned the bridge by doing all of his homework for a Social Skills Program that ran for all of Term 2. His article also included facts about the real Tower Bridge in London.

Construction

His mainstream Christian school support teacher is such a gem and works with Duncan mostly on construction projects. He gets time out of the stress of the noisy classroom to  work  with a friend. She informed me that latest project will be the Parthenon to be displayed in the High School History room.

Little Brother

Tristan has been doing so well at school this year but this week the wheels have fallen off the cart and he has been having mini-meltdowns over the smallest of things (dropped pencil, someone taking the handball, being bumped). Usually these things would just emit a 'squark' as his teacher likes to call the noise he makes. But with all the rehearsals (with costumes) at school and at the venue, for the Performing Arts Evening, it has been too much disruption to the routine. He does not do well when there is constant transition.

He's been learning to recite poetry. For the Eistedfod his Stage learned 'Hist! Hark!' and 'Forgiven' (Alexander Beetle). Then the past 2 weeks in class he's had to present a poem for News and so we've learned 'The Zax' and 'Too Many Dave's' by Dr Suess (from the Sneetches and Other Stories). 

But the Deputy Principal (whose son also has atypical autism) praised him for his ability to hold it together last week with a playground kerfuffle. I have to say I think, with such a busy term full of rehearsals, Eistedfods, Book Week Parade, Art Night etc., he has done exceptionally well to last 8 weeks! So in conjunction with his teacher, I am giving Tristan a Mental Health Day off tomorrow from school. He will be in LEGO construction heaven. I can only hope that he and little sister will get along.

Little Sister

Fran has a lovely friend at Preschool on Mondays and Tuesdays. They rave about each other.  But at Pre-Kindy (attached to the Christian school) on Wednesdays and Thursdays it is a different matter. She has major Pre-Kindy anxiety. Every week there are tears and stories about no one liking her, wanting to be her friend and being mean to her. I can tell you that it is becoming a major issue for us all. 

Yesterday I had a word with one of the teachers and today with the Director about the difficulties I had getting her to separate from me at drop off plus the negative comments. There is some concern that she lacks social skills that are necessary for entering into games already established with other students. Where have I heard that before? Now my third child needs social skills help! It probably does not help that she has two older brothers who ignore her most of the time and lack the very same skills. Sheesh! 

Anyway it will continue to be an issue until I can do some work on 'friendship' and 'what it means to be a friend' and 'what to do if a 'friend' does not want to play with you'. I think a social story might be in order for her. It never ends but I guess it is time I turned to her needs after years of looking out for the boys' needs.

Fran dressed up Tristan's bed pal 'Froggy Green-legs'. He was not impressed!

My 'other' life

In November 2009 both my sons were diagnosed with Autism Spectrum Disorders. Duncan was given the diagnosis of 'Aspergers' and younger brother Tristan 'atypical autism'. It didn't upset me at the time. It was a relief really. Finally I had an explanation for Duncan's lack of empathy and interest in other people. But more importantly why my youngest son was not managing with the basics of everyday life and having 'meltdowns' multiple times a day.

I know that I was sustained by a higher power and good friends during 2009, but also by my own ability to shut myself off emotionally and just go into the 'war zone' everyday. I used to say that "Mummy was putting her army boots on." And it really did feel that way. There was no relief from it. I just had to soldier on and become an advocate in every sense of the word. 

Never mind that I also had a 2 year old daughter to take care of as well. She has become such a blessing for me. And had I 'known' that my boys would both be on the autistic spectrum, I would not have had her. But I am sooooo glad she is here. She makes me realise that I am a good parent and what my parenting life would look like without ASD. She is social, independent, interested in other people, aware of how other's might be feeling and she looks me in the eye. And she frequently tells me that she loves me.

I do think that I am up for the challenge of parenting two boys on the spectrum though. I've had good training. I was a primary teacher for 15 years. My work colleagues always remarked upon how structured my class was. But probably, just as importantly, I have had 40+ years of Asperger's interaction from my own parents and brothers (undiagnosed). 

I haven't written too much about this aspect of my 'other' life. It is complicated, messy, emotionally draining and at times overwhelming. My escapism has been to sew. I am thankful for my first 'real' hobby in 43 years. I am thankful for my three children and an even-keeled husband of nearly a decade. I am thankful for my friends past and present. I am especially thankful for my best friend and the other parents who are also on this journey of autism. And recently I am thankful for Karen who has been able to put into words some of the stuff I have not wanted to write - yet!