Ds (3) newly diagnosed as autistic - what now?

[UserError]

That is pretty much all we know. His case went to panel earlier this month, and the next day, the paediatrician called and said 'we definitely want to diagnose him on the spectrum'. She spoke to DP, so I don't know any more than that as he's rubbish on the phone. He was asked if we want the diagnosis in writing, which we said yes to, but we've not received anything yet.

We have a CAF meeting next week so I was hoping to have a bit more to bring to the meeting as they've funded some nursery for us in the past and it would have been nice to have had some concrete information.

What happens now? I haven't got a clue what I'm supposed to be doing. We don't even have the definite name of what he's been diagnosed 'with'.

I think you have been treated really badly to be honest!
The paediatrician should have called you in to discuss the diagnosis face to face. There is no way you should have been told half heartedly over the phome.

I would ring them tomorrow and demand an appointment to discuss your child.

Sorry you are having to go through this

Hi UserError, I'll tell you what i did.

I chased up that diagnosis repeatedly in writing and waited almost 6 weeks for it!

In the mean time hard i know as it is to come to terms with it, you now have to start thinking of support for your child. Time to get into warrior mode. You must have read about how early intervention really helps so it all starts now.

So, apply for DLA - completely list everything with regards to your child and explain you now have a diagnosis.
Post this asap and they will write to you asking for your copy of diagnosis - which should be here by the time you receive that letter back.

you don't say whether your child is at nursery/preschool? arrange to see the nursery manager and explain you have a diagnosis so you would like to put some IEP's in place now. They will set up a meeting with you, nursery, hopefully assign a nursery coordinator to work with your child, and a representative from the LA-that person is very important. Also ask the nursery to contact the ed psychologist that works for the LA as you might be requesting a SA also so best to start familiarising yourself now with the ed psychologist.
That date will prob be a month away.

Start making appointments to see all mainstream primary schools now too within your area. There are several old threads on here on what to look out for when it comes to schools, but go with the best most experienced sen support service. A school that really has the best of both worlds (hard to find!)
Even if you're 2 years away from DC going to school. If you're a year away its even more important.

I hope that helps starting you off. Its definitely a journey not a destination and there's always more to do/find/research but firstly get that monetary support in and start the various assessment's off now. If SA is the route, it will make the process smoother.

Thank you both - I've already contacted the National Autistic Society and received this copy of information about applying for DLA and how to go about it. We're going to take their advice and time DS on a walk, noting down every time he stops, throws himself to the floor, refuses to move, etc. He's generally ok if left to his own devices, so if we're going where he wants to go, he'll walk normally with lots of stopping to look at things. If we're going in a direction he objects to, it's very difficult to get him to walk and I can't pick him up and carry him for long due to scar tissue down my side.

He's in nursery - this is where it gets complicated and this will out me, but I don't care - I had cancer, diagnosed in 2011. I finished hospital treatment last year and I'm now on hormone therapy for the next few years. The CAF was initially set up to offer us support while I was going through treatment, but then it continued when it became apparent that DS wasn't talking or interacting as he should.

I'm not working any longer as I'm not well enough, but I've still to apply for my own ESA as the form is a proper headfuck, so DP's is the sole income and it's not very much. DS is still at nursery, doing four days a week which we were looking to reduce to three. DP works a four on, four off shift pattern so nursery is very much needed some weeks so I get adequate rest for when he's in work over a weekend and I'm alone with DS.

The SEN in his nursery is very involved already. She attends the CAF, but nursery could definitely be doing more. Thank you for listing the things I need to ask for, as I'll be asking for them in the CAF rather than directly to nursery, so there is a proper record. Our LA representative who attends the CAF is apparently the head of department (god knows what department though!). She's our contact.

The Ed psych 'knows' of DS as the paediatrician called them when we were with her in our last appointment, as I was complaining that we'd been pretty much left alone with no information and I know that the school application deadline is Jan, so I wanted some guidance.

Before we got the diagnosis (well, the 'we are going to diagnose him as being on the spectrum' information) we were already looking at primary schools. We have one just around the corner which is supposed to have excellent SEN provision (they fund their own SALT, for example) and because we live in a deprived area, the school gets lots of money thrown at it.

The other school we're thinking of is out of area, but has a unit for SEN children attached to the main school, so they supposedly get the benefit of mainstreaming and are involved in the school, but have extra support. I'm not making my mind up without professional input, but most people involved with us mention that school as being good. Co-incidentally, it was DP's primary school!

I've just fished out the paediatrician's number and left a detailed message with the secretary along the lines of 'Received phone call on the 2nd saying they want to diagnose as on spectrum. Have heard nothing since. Want to discuss with Dr ASAP and make appointment.'

The procedure shouldve been that they bring you and your H in to have a face to face interview and go through why they think he is on the spectrum. It should ideally be the whole team (OT, SALT and pead) and go through each of their findings. They give you information on where to access resources and tell you what they will offer your dc next.

I agree with ineed that over the phone is unacceptable!

In the meantime try not to worry too much about the outcome and get as much support for him as possible.
Im sorry about your cancer, I hope you're doing well