Wednesday 11 November 2009

Onwards to the ADOS

It's a slow multi-step approach to diagnosis of autism. This does not really cause a problem, we are still more than early enough for timely intervention, and the multi agency approach has evolved over time and allows a number of observations and diagnostic interviews to feed into the final assessment.

Received a letter in the post today:
Thank you for your referral to the community paediatric team. This referral was discussed together with all the avalable information from both home and school in our multi disciplinary community paediatric meeting.

It was agreed [the child] will be offered an appointment in the child developmental clinic in due course."
What this means is that in a very short time (compared to some) we will have moved from raising our concerns (and had them validated) to the final paediatrician-led ADOS which, so far as I know will lead to diagnosis.

So far, my money is on Pervasive Developmental Disorder - Not Otherwise Specified or "not autism".

The way he is currently improving I'd even dare to hope that it's just delayed onset of language and he's just lazy like his Dad.

Monday 9 November 2009

Repetition, Repetition, Repetition.

Diagnosis, if and when it comes, of an autism spectrum disorder will be based on what is observed during the Autism Diagnostic Observation Schedule (ADOS). This allows for a formal diagnosis based on criteria which has been developed from Wing and Gould's original description of a 'triad of impairments'. A feature of these impairments is 'repetitive behaviour' often coupled with strange language.



I think that possibly qualifies.

However, if I can get him to add some lemon juice and pepper then he is already halfway to a tasty Thousand Island Dressing...

Sunday 8 November 2009

The Space Shuttle

After the aborted attempt at taking him to the cinema, and having finished our coffee & cake, we were wandering around the complex when a high pitched jabbering alerted me to something exciting The Tokoroth who was on my shoulders. He practically hurled himself to the ground in his excitement to get nearer this thing:


The Space Shuttle.

Essentially it is an inflatable obstacle course where you enter at the back (left) and overcome a few inflatable obstacles before a fairly daunting rope ladder leads you to the top of a very steep slide. He's pretty good in playgrounds and quite a tough kid despite his very sensitive nature so I paid up the pre-requisite £1.50 and led him to the entrance at the back.

The first hurdle was getting him to accept that this was the way on and that he couldn't simply reverse climb up the slide. I solved this by waiting until some other children clambered on and gently, er, threw him on (just to get him started).

He did a great job of climbing over and under the various hurdles until he got to the rope ladder. He looked at it, touched it, watched the other kids climb it and then sat down. He than lay down while children both half his age and twice his age clambered over, fell on or tripped over him in their desperate enthusiasm to get to the slide. The Tokoroth wasn't sad, unhappy, dispirited or frustrated he just appeared not to care that there was a ladder. So he played quite happily in the bowels of the thing while kids almost a third of his age stepped over, or on, him stopping only to give him a curious glance before rushing on.


"People rushing on by..."

Many parents fell in by my side anxiously watching their kids attempt the ladder. Concerned Mums and Dads voicing their concern that their little boy or girl could never manage the ladder, yet they all did and their Mums and Dads squealed with delight and bounded around to watch their offspring jettison down the slide.

All the while my son just lay at the bottom of the ladder, laughing and chattering to himself occasionally wandering over to smile at me.

"Go on, son!" I urged "Go up the ladder and down the slide!" He looked at the ladder, looked at me, smiled and ran back out the way he had come. Never mind, I thought, he's enjoyed himself plenty. He clambered off, ran around for a bit, and then decided to jump back on and the whole process was repeated. For almost an hour. Not a single other child in that time, even children in nappies failed to make it up and over. If you dragged a stranger of the street who'd barely heard of the term and said "point out the autistic kid amongst that lot" it would not have been a hard task.

As I ruefully watched him being the very definition of "autistic aloneness" I suddenly became aware of him stood at the bottom of the ladder and before I could even say anything he had his foot on the first rung and was starting to climb.

I think at this point, in my head, was something akin to "Run, Forrest, Run!"


...and he's off...

I watched for a few moments as he faultlessly ascended the ladder until he was out of my sight and then ran around to the front of the Shuttle where the slide was. After what seemed like several long minutes a little head appeared at the top of the slide.



A pause, a big grin, and he flew down the slide squealing with delight. He barely paused to acknowledge me before running back to the beginning to do it all again and again (and again). I cried. I cried tears of happiness and I cried tears of relief. I couldn't tell anyone and, even if I could, I couldn't have got the words out, so I just stood there, like a stupid fool, and cried and watched him go round and round and round again like the first 45 minutes had never happened.

I think what I learned today is that wherever he's going, he'll get there, but in his own time.

The Cinema

When Little M was about 11 months old I took him to the cinema. He was a bit of a fidget but lasted most of the film. By the time he was 2 he was a cinema veteran. Popcorn was very useful as an aid to keeping him in his seat.



I have tried the same with Tokoroth but even today, aged 38 months, this little fella will not even go inside the auditorium. Even armed with popcorn, Fruit Shoot and Smarties, as soon as we walked into the darkened cinema he was like a cat being lowered into a bath. He almost set off the fire alarm mistaking the panel on the wall for a light switch!

As children half his age filed keenly and quietly in, he sat rigid by the entrance refusing to be coaxed, bribed or manhandled in to see the film. He's small for a three year old but almost impossible to impose your will on without a tantrum that would have Esther Rantzen in your face inside five seconds.


Experiment abandoned, elder siblings left to watch the film, The Tokoroth and I retired to Costa Coffee in Waterstones where I caffeinated and unstressed while he quietly read and chatted happily to himself.

While this may appear to have nothing to do with autism (and it may not) it's just an example of how he is different from his siblings and some other children. It is though a good example of a criterion of autism spectrum disorders : peculiarities of hearing. Many children with autism have been suspected of being deaf at an early stage in their lives. Very few actually have a hearing loss, though they may not respond to their name and appear to be unaffected by audible changes in the environment. Conversely they can be more agitated than their peers by ordinary/loud everyday sounds. The Tokoroth puts a big fat tick in this box.

Although, maybe he'd just read the reviews and knew the film was crap...