What to expect from follow-up appointment from ASD assessment

[Applesandblueberries]

My DC had their assessment last week at the communication clinic and we have been told that in two/three weeks we will have a follow-up appointment to find out what they think.

Any advice on what it's likely to be like if they do/don't diagnose. Are you offered support/advice if it is diagnosed and if not is any alternative help given? Also any advice on what I should ask them? I've been so geared up to getting to the appointment I haven't really thought beyond it.

Any advice anyone? I have an appointment through for early next week and I'm very nervous about seeing is DC gets a diagnosis.

The lack of replies is probably because what happens depends on your area. Every area is different.

We had a face to face appointment back in June were they told us there and then at the end of the appointment that our 7yr DS (just turned 8) had ADHD. They were able to do this from all the forms that us and the school had submitted. We just had a telephone appointment to see how things were going and discharged us as we are not going down the medication route. If we want to go down that route, we just get re-referred, but we we are going to be doing a parenting course first. It took about 7 weeks for us to get a copy of the report after the assessment.

Every area is going to be different to how they do things. All you can do is take things one step at a time after each appointment Make sure that you go in with a list of questions to ask for what the next step is for whether your DC gets a diagnosis not as I would have thought that they would know which way to go next or going back to your GP to talk about the next steps of where you could go.

This is a journey that we have not long started so, can only tell you what we have done

My son has been diagnosed today. Each area is different. Where I am there is at least a 12 month wait from first appointment to finding out if a diagnosis is made. I cried when they told me. It can be quite overwhelming. I’m glad he has a diagnosis so we know why he is the way he is and can now get the support needed. I am also gutted though as I know he will face struggles through to adulthood. I am making the decision not to tell him yet though as he doesn’t say anything about feeling different and he wouldn’t understand anyway. In our area we are given a post diagnostic booklet with local resources to access and we get a follow up appointment with the consultant. this is only if a diagnosis is given. If not I think another appointment is offered to try and determine if the child has another underlying condition like learning disability or ADHD. Each area is different though.

Thank you for the replies - this is really helpful. I do hope they won't just discharge us if we do get a diagnosis - but we will be offered some further help. Wishful thinking maybe!

That is interesting @foxy86 that you haven't told your DC yet - can I ask what age they are? I think due to their age we will have to talk to our DC about it - but I'm struggling to think how to go about it.

My son is 10. He doesn’t mention anything about feeling different. He is happy to go with the flow at the moment. However when he gets around to noticing or asking questions we will talk about it.

What age are your DC @Applesandblueberries ?

DD was Dx'd fairly early (4). We started talking about different brains probably even before that, and started to mention the word autism in that context after her Dx to see if she had any questions but I would say she didn't really show any interest in it until last year when she turned 7. She seems to find it very reassuring to know why she finds some things harder and can get overwhelmed, and actually gave a Show and Tell about her autism to her class at school last year which went down very well and she got great feedback.

There are some great kids books now that might be helpful in supporting those conversations about difference and neurodiversity. E.g. factual books by Abigail Balfe, Joe Wells, Camilla Pang, Sienna Castellon (among others - and depending on age different ones will be appropriate), and fiction by Elle McNicoll, Libby Scott, Aisha Bushby and others. Lizzie Huxley-Jones has a good list on fiction here: lizziehuxleyjones.com/#autbooks These are all autistic authors, which I think is important.

In terms of follow up I agree every area is different. We were given very little - mainly just leaflets - but there were things like coffee mornings and local parent support groups that are useful. Some of that will be on your "Local Offer" website (just Google your local authority name and "Local Offer" and it should come up). We also did the "EarlyBird+" course via the Local Authority which was reasonably good (mainly because a TA from DD's school came with us, so it really helped with the school/home communication and understanding). However, the waiting list for that was 18m-2 years post-diagnosis, so to be honest there wasn't a lot in it that we didn't already know/hadn't come across to some extent.

This article by Chris Bonnello may also be helpful (and it's worth looking around his site as he has a number of useful articles for children/young people too, and has written fiction for young people with ND characters). He is autistic, used to be a teacher and I think is also step-parent to an autistic child, so I think he's great at seeing things from all angles.

autisticnotweird.com/when-should-i-tell-2020/

Hi my son has had his ADOS appointment today and I was wondering what the next steps after this and what results we can expect if anyone had any advice or has experience of this I have a follow up appointment in 2 weeks on my own to discuss the ados I think