Need to scream!!!

[JackJacksmummy]

Saw some family today, 1st time since the ed psych has suggested ds has autistic traits and family knew there was some assessment going on so obviously asked the outcome.

Explained to my nan that although we have no formal diagnosis, the educational psychologist agrees that he does have autistic traits which we need to get checked out properly.

I have a cousin who is full blown autistic, he's 22, doesn't talk, still has a 4-5year old mentality and needs 24hour supervision so pretty severe.

So, as I knew they would, the comparisons start and of course I get the "he can't be autistic because he can make eye contact" or "does he line everything up" or "but he can talk" .

I explain that's why it is called autistic SPECTRUM disorder - because the spectrum is so wide you don't have to be totally mute to be autustic.

The fact he will only make eye contact when he wants to, and talk to you if he wants to, and hug you if he wants you, has to organise money in their correct order etc etc, as far as she's concerned is just normal behaviour - she saw him for all of 5 hours and is not living with all the other quirks and meltdowns he has so doesn't see what we see!!

Does my Fricking head in!

I hear you

My folks stayed recently for several days. So I take the opportunity of having my nearest and dearest to have a whinge about how life is, well, quite a bit more crappy than I had hoped for. Only to be told that I underestimate my DS and he is going to turn out far better than I think and understands a lot more than I think and I am worrying about nothing. This is the boy who last week learnt to ride his bike with stabilisers - and today just rode it off the edge of the patio down a flight of 10 steps threw it on the floor and repeated 'my bike is broken, my bike is broken, said baby bear' and was convinced the problem was the bike.

Hi Jack,
It sounds like we are in similar situations. My DD has just been seen by ed psych who has suggested autism. Luckily noone has tried to dismiss it yet, but I have previously been told by many HCP's that she couldn't be autistic as she has good eye contact.
How old is your son? We are all feeling a bit raw about it in this house.

Hiya prince,

He is about to turn 6 this week, I have suspected something since the summer Hols before he started school so almost 2 years ago but they were reluctant to make any assessments whilst he was in reception in case they were settling in issues so its only really been since Christmas that things have started moving and that was only because I pushed it. I was already SA+ by this point for his speech & language so SENco were aware of him already.

I did ask the doctor at the beginning of the year for a referral but nothing came of it and I knew it was a long wait so presumed that's why we had not heard anything. During our ed psych meeting she suggested we get him looked at further so I called the doctor and it turns out no referral was made and to wait for the ed psych report to be written and take that with us to the GP.

That's as far as we are at the moment, but have been promised the report before school breaks up.

How old is your little one?

Tell your Nan to come to ds' autism swimming sessions. She'll see ds get out every 5 minutes because he wants to go look down the shower plug hole or hear the hand dryer again. She'll see the one boy who can't bear anyone coming near him & lashes out if they do. She'll see the non verbal teenager who spends the whole time merrily splashing away making as much noise as possible while another boy who has to wear industrial style headphones keeps as far away as possible. And she'll also see the little lad who, on discovering he could jump in, spends the whole 2 hours doing just that.

That's the spectrum right there people!

I completely get this thread!!

To be honest, I think we might as well be banging out head against a brick wall when it comes to trying to explain our dc's to some people.

I'm currently living with my DD's gran and she insists that she's just "quirky". "Let her be that way. She's just being her". Which actually makes me feel like the shittest, most incompetent mum ever to have walked the planet!! I think she's just trying to put my mind at rest, but it's kind of like papering over the cracks. Ie, you can give me all the kind words you like, but underneath it all, the problems are there.