wait for diagnosis

[Guest guest]

Hi Janet,

Our wait for diagnosis is long because that's how the Canadian medical

system works. Sigh, we don't have to pay but , boy do we have to wait!!!

The ASD piece revealled itself gradually and some of it I didn't recognize

as anything indicative of more than DS. Evie dangled stuff at one year.

At eighteen months, when we were looking for a house in a new

neighbourhood, Evie would react enthusistically to all the ceiling fans

(yes, we ended up buying a house with many ceiling fans partly because we

thought she liked it!). It was the sensory stuff (auditory

hypersensitivity) that started around age two when I knew something was

going on - all of a sudden she couldn't cope in environments that had been

OK before. There were lots of behaviour problems - extreme panic, crying,

hiding, anxiety. First I read the " spirited child " literature thinking

that this was a temperament issue. By age 5 someone put me onto sensory

integration information which really clicked and then lead us to the ASD

eventually.

Right now we are seeing sensory seeking activites like grinding teeth,

repetitive sounds and actions, stacking books and puzzle pieces

obsessively, still lots of sensory integration issues - hyper and hypo -

but hypersensitive hearing is still the big issue (altho' it has improved

dramatically in the past year, Evie is 7 1/2 now). The intense time of

non-compliance seems to have past for now - I don't mean to suggest she is

compliant all the time (ha, no way!) but we used to have meltdowns many

times a day for unknown reasons. Now, when she gets mad I can see the

issue behind the behaviour and there are ways for her to cope which she

will attempt to do. She is verbal and very repetitive in her choice of

chatter (which is constant). She is always in motion. Our lifestyle is

relatively routine but when it isn't Evie can get over stimulated and can

really lose control. I find this also happens when she is exhausted. She

has always had restless nights.

She is not on any medication - at this point we can cope. Hope it

continues to be this way.

Tell us more about the signs of ASD you see in Tori.