Hello - I'm new - please be gentle with me...

[frazledworkingmum]

Hi

I've ben lurking for a number of months now and have finally summoned up the courage to post to say 'Hi'. (Thanks Riven !)

My young DS (6) has recently been provisionally diagnosed with 'A' typical autism (aka Pervasive development disorder not otherwise specified). I am still waiting to receive the report following the ADOS test (well I think that's what was used to assess him.) but at the end of the assessment the DR said she felt my DS was on the spectrum, and mentioned PDD NOS. After that everything was a bit of a blur as she went on to talking about statements, DLA and Support groups etc
I am so confused as I'm still not convinced there is anything wrong with DS (Or may be in denial).
The assessment has only come about because the school were concerned about his behaviour in class, due to lack of concentration and his poor interaction with his peers and they suggested he may have ADHD. Following a number of appointments we arrived at this diagnosis last week. They still haven't ruled out ADHD and we have go back to see someone else about that.
At home I have no major concerns about DS's behaviour. He seems to be a completely different boy at school. He is an only child and I have been told on more than one occasion that because of this he doesn't display the same behaviour as he has 100% of my attention at home. Even from watching him during his assessment last week, I found it very difficult to pick out anything that would lead to this diagnosis. The DR did have trouble engaging DS at times,and he was reluctant to talk about his feelings (probably because he was more than interested in the toy she had just given him rather than answering what made him angry). He is very keen on dinosaurs and every person we have seen has picked up on this and says he is obsessed with them.
I think I'm struggling with trying to decide whether there is an underlying problem. When I compare my DS with some of his friends I really don't think he behaves that differently to them. I have never really been able to observe him class
To make things even more complicated DS goes to a private school and I am unsure whether I am going to be able to access the extra support that has been mentioned at these appointments that my DS needs. I have already had to pay for an educational psycologist assessment (inc IQ test) as the LEA would not pay for this. The school suggested I have this done so they could get more ideas / strategies on how best engage DS in class.
I was hoping whether any of you could answer the following questions I have
Can a statement be issued and used at a Private School
Do Private Schools use Action Plus ?
Anyone else queried their child's diagnosis?
Has anyone else got a child with autism that is happy in a mainstream Private School ?

I'm so confused and not sure what to do now ??

I've waffled on for ages and could continue as this is all so new to me. I just want to do what's best for my DS

Hi frazzed - I understand how confusing it all can be (DD just turned 4yrs was diagnosed ASD 6 months ago). Did you challenge Dr's diagnosis - it may be worth asking how they are sure DS is ASD rather than ADHD (although I understand these conditions can be co-morbid)you could ask are there any other similar disorders he may have instead. You could also ask for a second opinion plus I have heard that you do not have to accept a diagnosis so especially if you have doubts these options may be worth considering. I have not queried DD's condition at present although she is making considerable progress so depending how things progress I may do in future.
I am not sure how things work in the private education sector I think it may depend on individual schools as to their policies. I guess the thing to do is ask your DS's school directly.
Let us know how things turn out

Hi Evie
Thanks so much for taking the time to reply.

I didn't question the diagnosis because the end of the assessment was very rushed as her next patient was waiting ! She said everything would be included in the written report, which I am yet to receive.

As all 4 different Drs we have seen (inc the EP) have all said my DS has issues I suppose I have to respect their views - Doesn't make it any easier to accept tho !

School are certain there is something wrong with DS, but so far have been very supportive. I feel it may become more of an issue when he goes into upper school when they may not be so accomodating.

Hi Frazzled,

You sound quite a bit like me a few months ago. I still have many many days when I question DS's diagnosis. And many many other days when I worry to a ridiculous degree about the fact he is on the spectrum.

Again, I had no concerns about him but school were constantly complaining about his behaviour.

Now I know more about ASD I can see more of why he got the diagnosis, but still often feel weird about it.

Just let it settle in for a few months. Gradually you'll work out things you want to do for / with him. There's no urgency... he's done perfectly well this long without a dx.

Rationally I don't know why I worry about him so much - but I can't stop it. Even though, for my DS pretty much the worst thing that happens is he has a fairly mild meltdown.

We go to a state school, so don't anything about the private system...