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First appointment with Pead yesterday

(9 Posts)
baboos Fri 29-Jul-11 21:25:55

Hi all,

had out first app with pead yesterday, my son who is 3.5 was on his worst behaviour (shouting, scratching me, meltdown etc) only 10 mins in, and continued until the end. I felt the need to explain that he was NOT always like this......and wished she could see the adorable boy we see lots of too. At the end of the meeting she said we were being put on the waiting list for the disco assessment, but as there was a long waiting list it, she was going to put on the letter "probable autism", as this would help me with access to help, her words.

I'm new to this, has anyone been told probable autism before, and is this normally said...........

If I'm honest the worst part to this is the effect his behaviour is having on his twin brother, he is a tomentor with his pushing and hitting and I try to get there before his brother retaliates, but I am struggling to make him understand why he can't do the same back.

Any tips greatly appreciated..........

Jerbil Fri 29-Jul-11 22:37:24

Yes, but then my sone has quite autistic behaviour but can be incredibly social, and can sometimes be opposite, but this inconsistency meant they psych doesn't think he has ASD. She is thinking more ADHD but they won't diagnose it till 7 where we are!

It's a long road. Do your own research. Write down your observations of your DC yourself, and they at least get an accurate picture of homelife.

Good luck

janetsplanet Fri 29-Jul-11 22:40:05

we were refered by paed to CAMHS. A woman from CAMHS phoned me and said she was putting us in for a multi assessment? as the paed had written on the referral that it was POSSIBLE ASD

BsDad Sat 30-Jul-11 09:04:18

The term 'possible asd' was first used by our son's Speech and Language Therapy worker. By the time the paediatrician came to diagnose, we pretty much knew and expected it (not that it made hearing it any easier). There was no assessment other than the doctor reading reports from SEYS, SALT and nursery, and spending 10 minutes with him. I was expecting some sort of test, but I guess it wasn't necessary.
What I would say is that, since diagnosis, the access we've had to support has been very good and has really helped. No one likes to get the diagnosis but it does open doors.
This week we told our son's older brother about the situation (they are nearly-four and six). We used a book called 'My brother is different' and I also had a PowerPoint from Autism Outreach, which you are welcome to have. I think these things helped my son to understand.
I've written about the whole process, from pretty much the starting point you are at, in a blog I write. You might find some of it useful and relevant:

www.autisticson.wordpress.com

Starchart Sat 30-Jul-11 09:21:57

Babos, sorry but waiting for a dx if you want one should not be delayed. The brain is still plastic at this time and intervention now can make a difference to the life chances of your ds.

If you can afford it at all, even if you have to make hard sacrifices, get a private diagnosis.

Also go onto the IPSEA website and send off a letter to your LA for a statutory assessment to get a statement in place by the time school starts. Get yourself a copy of the SEN Code Of Practice too.

Finally, research ABA on here and out there.
Get hold of the Hanen book 'More Than Words' for tips you can begin to work on at home.

baboos Sat 30-Jul-11 12:31:03

Thanks everyone........his pre-school have referred him to the inclusion support team (which I understand is know as portage also) they visited us at home for an hour, he was being very good, and have written saying they feel a more in depth 4 week assessment will be useful, before they agree to anything, they will start this in September when school starts again. His pre-school, whilst fantastic, have very little experience with asd kids, as we live in a village on the edge of a small town, but they feel too that there is something going there, the manager already suggesting she doesn't feel he will be ready for school in 2012.......which fills me with fear. He is a bright boy, but definately seems to have problems with retaining instruction/information. One example of many they gave was that he has to be shown everyday, what to do at lunchtime, where as his twin brother knew exactly what's required after only a week of lunches. (They have been attending this pre-school since they were two, only two morning a week, they now attend for 3 full days 9-3).

What I am struggling with is that some days I think this is all in my imagination as he will act and behave very non asd like, yet on other days I am convinced he has asd.........is this normal with asd children, do they have lots of good days too.

Obviously it goes without saying that if he has asd, its fine, (well not fine, but you get my point) I just need to start the process of getting him the help and support. My point in my op was that my understanding of the definition of the word probable was that it was likely to be so, and from what I have read, and from someone mentioned earlier, was that early intervention was critical.

bsdad......just to say I am an avid reader of your blog and have already gained so much information, so thank you

EllenJaneisnotmyname Sat 30-Jul-11 14:11:53

Probable is definitely stronger than possible, I think your Paed is certain but needs to go through the correct channels. sad Second Star's post, the Hanen book 'More than Words' was my bible. Try Winslow or Amazon for the best price. Should be in the region of £35 - £40.

EllenJaneisnotmyname Sat 30-Jul-11 14:23:35

More than Words

baboos Sat 30-Jul-11 20:22:47

Thanks for the link, had scribbled it down earlier, so you've saved me a search, will order it tonight.

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