What advice would you give parents who have just been told their child has autism?

[QueenEagle]

Today ds3 saw the paed. Lengthy appointment during which she observed him whilst gleaning history from us as well as reading all reports from Speech Therapists, playgroup, Early Years Team.

We were told he "almost certainly is autistic". He will have follow ups obviously and more tests done (including bloods for chromosomal abnormalities etc). They propse to treat him as if he IS so whatever help he needs is put in place.

I am a bit overwhelmed and a little emotional depite having suspicions for a long time. We have been given tons of leaflets and books but tbh everything seems a bit of a blur right now.

The Sally -Anne test is a bit specific- it tests something known as false belief tasks- autistic children fail some of these, pass others. My severely autistic son is quite capable of teasing for example (in fact its his favourite pastime). He doesn't have the language to undertake the Sally-Anne test, but he clearly understands what we expect of him at times (or he couldn't tease- mostly this consists of pretending to do (but not actually doing) something he isn't allowed to).

My advice would be find others in the same situation. Particularly great if you can find someone with a child roughly in the same part of the spectrum as yours- they'll become your best friends, with a strength of friendship you never knew possible

Socci is right Sally Ann is really for 5+.

JJ is also right, making friends with childen similar to your son is great. We did this through local branch of NAS who are good at buddying you up with people that you will have common ground with.

We did NAS Earlybird course aimed at pre school autistic children. Although in our area there are only 18 places per year. All the children in our group were at a similar level.

Portage is good and our portage run a playgroup, they can also let you know what is available in your area

I thought the Sally-Anne test might be a bit too early for him yet.

A woman from the CDC contacted me today to see how the paed appt went; she has done some work with ds3 on language and comprehension in the past at home. She seemed quite helpful and has given me the Ed Psych tel no to chase up as it will be important for things to be in place and all teachers aware of his needs when he starts in April.

She seemed to think however that because he got excited about opening presents at xmas time - that shows he doesn't have a classic autistic mind iyswim.

I have to admit to feeling a bit confused because on one hand I have one professional telling me he is almost certainly autistic and then another telling me he only has some characteristics of autism but isn't strictly autistic. What on earth do I tell other people to explain his behaviour - is he or isn't he? Today this is doing my head in a bit.

JimJams - I will contact the helpline first thing next week, thanks for the advice

The comment about the presents is just silly IMHO. Ds2 was certainly very excited about opening his presents this Christmas. Ds1 (6.5yrs) only really 'got' Christmas when he was 5yrs old and still isn't keen on surprises but still enjoyed Christmas morning this year. One thing I've learnt since discovering that both of my boys are autistic is that there isn't a lot that all children with autism do/don't do. They are all so different.

I was told that ds1 couldn't be autistic as he picked up some toys when I told him to! He is, severely. Ds1 didn't understand the concept of presents until he was about 5 (but that prob has to do with learning difficulties rather than autism). Now he loves presents. I've been trying to take the tree down all week- each time he cries. he likes the lights and the decorations.

My DS (aged 7 and with AS) was also very excited about opening his presnets QE. (He does like to maintain control of the proceedings by insisting that we open them in a strict order and gets stressed if anyone tries to open one "out of turn", though!)
He did used to say that he didn't like getting surprises, but seems a bit better about this now.
As the others have said, I would not pay too much attention to people who say he cannot be autistic because he does or does not do certain things. The two DSs I have dx with AS are very different from each other, but share some basic traits.

We get the oh he cant be autistic because tripe all the time- last time it was from a friend of Dh (rather, really his friends MIL) who had a chat with him and could tell. Had she ever met an ASD child? No. What does she do for a career? Credit control. What did the SALT say? HAs the traits one would expect in autism with SPD.

Its all bollocks.

Don't listen to anyone except your healthcare specialists, and then take it all with a large pinch of salt ime.

Sam enjoys presents, but is very ungratefula nd rather than being thankful just moans when they run out, doesn't get the generosity part, just the me me me part . Tried to adddress that a bit this year, by getting him to give gifts ut, and getting him to choose charity gifts (As well as chocolate) for his teachers, the teachers it turned out just binned cards without noticing what was inside so that was blown. *Unlike ds2 and ds3's teachers who wrote thank you notes and really appreciated it).

DS1's teacher- senco and with responsibility for RE and personal development- only thanked us forr the chocolate. laugh or cry!!!!!!!!!

QueenEagle, just wanted to say hi, we have just been referred this week but I'e had my suspicions for a while. I'm also feeling devasted and in shock etc and very worried about the future.