Half way through diagnosis (poss asd) and feeling lost

[Levantine]

Hallo

We have had two consultations with community paediatrician who thinks ds1 prob has autism - she was careful not to say so categorically, but she is head of the social communications unit so v experienced. Adoss is next step.

I am just feeling really at sea. Ds is hitting me a lot, he says he feels sad all the time and wants to make me sad. I don't know what to do, I am firm and clear and say 'use yr voice' but it makes little diffence and then he will tell me that I hate him and everybody hates him. He is also hitting his two year old brother. I've no idea if that's because he is struggling at school, or struggling with me telling him not to hit.

Then I am not sure what I should be asking school for. Ds won't do any work unless he is cuddling the TA (!), but she is the whole class TA. I think he probably needs dedicated one to one support but at what stage tod I have that conversation with them? Should I try to get a statement? How does the funding work?

I suppose more generally, and I might start a separate thread on this - if you have been through this process, what advice would yoyo give yourself at the begninning, knowing what you know now

Sorry this is long, but helps to get my thoughts down

Hi. I'm sorry you are feeling so lost.

Do you know how long until the assessment? It might be wise to put that question in writing to the Community Paed and ask for a working diagnosis pending that appointment.

How old is your ds?

What have school said about your ds?

WRT to funding. That is not your concern or problem and if anyone raises it you tell them that. Your only concern is that your ds' educational needs are met and they can worry about the finances/train up volunteers/find creative solutions etc. to do so as that is THEIR JOB.

Thanks, this is really helpful.

I agree, I desperately need some support in how to manage him at home, but where do I get it? I spent twenty minutes yesterday trying to get through to the NAS helpline but no luck. When I asked the paed she said something about support groups, I assume she meant NAS ones?

Polter, I've seen you mention OT a a few times, how do you access it? Through paed? Or school?

Also, I really like our school a lot but I am worried that I might be a little naive in how much they can prioritise ds's needs.

I totally agree about MNSN, no idea where I would be without it to you xx

In some areas there are parent support groups which can be really helpful. Try your local sure start or childrens centre for info. You might be able to access some family support to through the childrens centre. Its worth asking.

It is awful waiting for appointments but use the time to do some reading, keep a diary of his behaviour and difficulties and come on here for support.

One of the best bits of advise I was given was to treat Dd3 as if she had Asd even before diagnosis. She showed so many red flags. Introducing some strategies recommended on here was the best thing I have ever done.

Lots of visual clues and reminders and alot less wooly language really help in my house.

Good luck

He's 6. I'm not sure about the sensory stuff, still unpicking it. I think if anything he is hypo sensitive, doesn't feel the cold, likes strong flavours, needs lots of physical contact. Would that still trigger meltdowns? I am so clueless

Dd3 is waiting for an OT appointment for further investigations, this will hopefully include a sensory assesment.

I filled in questionairre and it clearly showed that she can be both sensory seeking and sensory defensive, which I admit I find difficult to get my head around.

It is quite clear that many of her issues are sensory based but how to unpick it all is a problem, hence asking for another appointment.

Thanks, this has been one of those lightbulb moments re sensory stuff, I had sort of discounted it. Ds did say to me one day that other children's voices made him scribble on his work but I hadn't known how to make sense of that. we obviously need to investigate.

I find it so so hard to get my head round any of it because no matter what I read every child is so different it is sort of relevant ad irrelevant at the same time and then every so often something clicks

Oh yes, I get it with loud eating when I am very tired. I just can't stand it, makes me want to scream