1st appointment looming

Hi Catlover. We're just going through the process with our almost-13 year old son (and waiting to start the process with our eldest when he turns 18!). Our boys, despite being referred at pretty much the same time, have gone through totally different processes. With the 12 year old we were seen by CAMHS for a 2 1/2 hr appointment where they spoke to us all together and then spoke to us about his development and issues and he went into another room to do some games and tests. We then sat on a waiting list for 6 months before being contacted to say that we would be seen by a private company so they could cut the waiting times. This has consisted of:

Questionnaires for us and school to complete (I don't think he had to do any actually)
The Autism Diagnostic Interview for me and his Dad - many, many questions about how he is now, how he was at 4-5 and how he was in the early years. V tricky. If I'd known I'd have taken more notes
An ADOS interview between him and a psychologist. I sat in on the start of this and was quite surprised by the Qs she asked, but maybe it was part of the assessment (what do you want to get out of this appointment? what do you think your mum wants to get out of it? do you know what autism is? do you know anyone with autism? are they like you?). 

My son's also very eloquent (with adults) so not at all sure what outcome will be. I'm slightly concerned they don't seem to be going to do any school-based observations, because it's interacting with his peers where he really struggles. 

Good luck in the journey - and definitely start making notes. I jotted things down in the back of a notebook and then had a typed sheet of things I wanted to cover, because I didn't want to miss anything. I'm sure I still did though!

Thank you very much for your reply. It was good to hear about your experiences, and I have started taking notes as you suggested. I’ve also started a diary of incidences that occur regarding my daughter.

I’m worried about the paperwork the school sent off in April might not be acccurate. She’s only now beginning to have problems with school. We have a meeting with the SEN teacher this week actually. I don’t know what they can do to help...

Do you know if they definitely won’t be doing any school observations? Do you know how long you have to wait for a final diagnosis? Did they suggest anything to you after the assessment?

Funny that you mention your older child is also being assessed. I’m pretty sure my eldest is also on the spectrum, but he disagrees. He’s adamant he’s fine. I can’t force him to address the issue, but he has many traits, and has been like that since birth! The only difference so far between the two of them, is he was actually very unruly in school. As a teen, school found him to be ‘gifted’. As a young adult he had depression. I could list his traits, but I guess that’s for another discussion lol...

Good luck with everything! And I hope your boys get the help they need to get on in life with as little stress and difficulty as possible.

Good to hear from you Catlover. We were told we might hear back from assessment before Christmas unless they thought they needed Ed Psych or something else involved in which case it might be Feb! So, it should take somewhere between 14 and 18 months to complete the process. It sounds like it's a good idea for you to meet with school and they can presumably update their input if they need to - and lucky you getting to meet the SEN. I keep asking to and being told we don't need to as he's doing OK at school, and they didn't let me see what they'd sent in. 

As for your eldest, mine is similarly not keen on the idea of assessment but has been struggling increasingly and so is more open to the idea. He too was identified as 'gifted' when he went to high school but didn't achieve his potential due to anxiety/sleeplessness/panic (and an inability to make himself study!!). Today we saw a psych about his sleep problems (typically 4 hrs/night, 6 hrs at weekends) and when she asked how long the problem had been going on and we said since end of primary school she looked very surprised and asked why we were seeking help now when it's been going on so long. I felt awful but my husband, who wasn't there, pointed out afterwards that I'd actually been taking him to the doctors' about it every few months since then but we'd not really got anywhere (beta blockers for breathing problems/anxiety which 'might help with sleep', sleep hygiene info (after 5 years a doctor looked really excited and said "you need to have a drink of milk before bed and use a technique called 'blocking' where you just stop your thoughts as they happen". If that doesn't help, try Nytol (not for use in under 18s!). At that point I gave up!! 

Good luck with the SEN meeting - how does your daughter feel about it all?

Hi Catlover. Hope you find out soon about the assessment outcome. I'm not a fan of the waiting! I think your daughter's school is handling things well in giving her space but also encouraging her to keep trying socially. It may be exhausting but as she gets older it's likely to be increasingly important for her to have a friendship group. Of course, if it really does get too much then I guess things will need to be reassessed. My son fell asleep in school yesterday (not the one who take melatonin, the other one!). Ready for a break I think.

Delighted to hear your eldest is doing OK. Working and progressing with life is great. I would love to be able to write the same about my eldest this time next year (or studying, we've just been through difficult times getting UCAS form completed). If the mood's OK, that's the key thing (but good that you can tell when he's faking). 

Let's see who gets assessment outcome first, but in the meantime have a good Christmas.

Hi Catlover. Hope you find out soon about the assessment outcome. I'm not a fan of the waiting! I think your daughter's school is handling things well in giving her space but also encouraging her to keep trying socially. It may be exhausting but as she gets older it's likely to be increasingly important for her to have a friendship group. Of course, if it really does get too much then I guess things will need to be reassessed. My son fell asleep in school yesterday (not the one who take melatonin, the other one!). Ready for a break I think.

Delighted to hear your eldest is doing OK. Working and progressing with life is great. I would love to be able to write the same about my eldest this time next year (or studying, we've just been through difficult times getting UCAS form completed). If the mood's OK, that's the key thing (but good that you can tell when he's faking). 

Let's see who gets assessment outcome first, but in the meantime have a good Christmas.