1st appointment looming

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.

Sorry I misunderstood. I thought you hadn’t had any SEN contact! How was the inclusion for him? My daughter has suggested not handing in homework, to get a detention, not turning up so she’s gets a withdrawal! She just wants to be on her own. She’s allowed to sit alone in most lessons now, and has a pass to sit in a classroom several lunch times. They want her to continue to mix the rest of the time, although it’s too exhausting for her. 

How is the sleep issue? Can your son take Melatonin for extended periods? How has he been since he started taking it?

As for my eldest, he’s doing OK. Still working and progressing with life...or acting like he is. His facade is good, but I can see through it. His mood has been good for a long time, so as long as he’s happy, I am. 

The assessment was today. I’m not convinced we’ll get a diagnosis. She’s got all the traits, but they said she had good eye contact and was very ‘likeable’and becuase she nodded when they talked....! they said she could be a master at masking, but also said it could one of many other conditions, although some of those she said weren’t likely. 

They need to deliberate, and talk to my ex, and maybe approach the school. We go back in a few weeks I think.

i knew they wouldn’t say anything outright, as she’s so good at pretending, it physically exhausts her once she’s in from school, or even an afternoon out with friends.

its just a waiting game now for us!

Congratulations on a positive SEN meeting. I've communicated with my son's school via email and over the phone, just not face-to-face. He had a lot of problems shortly after he started at high school and at the point he threw a desk across the classroom because someone had nicked his pencil case school started to offer support. He was taken out of lessons entirely for a few weeks and spent days in the 'social inclusion unit' before being reintegrated. However, since then he's opted to spend every break and lunch there, reading a book, rather than with all the other kids. He was involved with lego therapy last year too (he loves lego, so that wasn't much of a hardship) but now it just seems to be a case of him having somewhere to go at breaks and lunch. We were fortunate that one of the staff in the unit used to work with autistic kids but unfortunately she seems to have less involvement with the kids now - it would be nice if they were encouraged to interact but I know staff are absolutely overwhelmed with some really challenging situations to deal with. 

I chased up the assessment outcome today and was told we'd definitely know by mid-February! Given that the psychiatrist we saw kept referring to school info that wasn't relevant to our child in the assessment, I've little faith that she'll remember anything at all by the time she meets with the psychologist who saw our son. 

On a more positive note, eldest son has been prescribed melatonin and has slept for 6 hrs for the past 2 nights. Would be lovely if it helped in the longer-term! Sorry to hear about your son's struggles. It's so hard to watch and not be able to help (and exhausting). Is he coping OK now?

Good luck next week.

Thank you for your response.

I am now keeping a diary of things that happen day to day, and I am in the middle of compiling a few lists of things about my daughter, to help me remember on the day. The more I think about things, the more I am recognising. It’s certainly the ‘little stuff’ that seems to matter.

Hi again!

I really hope you do hear something before Christmas. The waiting is a nightmare. Do you know what help will be offered after a diagnosis? And how does your son feel about things? Is he accepting of himself?

Well, our eldest sound similar....and regarding sleep, my son doesn’t sleep much now. He goes to bed at 2.30 every night, and is up for work at 8.25 (to leave at 8.35 lol) He slept even less as a teen. Always up late. Also, he never studied. He did quite well in his exams, but not as well as he could have if he could have applied himself. He also dropped out of University. It was all too much for him (though he won’t admit it).

My daughter knows she’s Autistic, and she wants confirmation, but she isn’t happy about being perceived as different, or as needing ‘help’ or special treatment, as she put it.

When I received initial paperwork to fill out for my daughter, I’m pretty sure I had to send a letter and one form to the school. I don’t remember detail, but I think the form was just to add names of teaching staff for contact, and presumably correspondence. I can’t remmeber if they asked for supporting info, but they might well have done  after receiving the signed form....

I’m sorry to hear you haven’t been able to speak to anyone one in SEN. Everyone should have the opportunity, so keep persevering. I guess we are lucky. We met with her last night. We were late. My daughter done all she could to ensure that, as she was so anxious.

Anyway  it was great! She addressed every one of the issues we mentioned, and had a solution for all of them, so school life ‘should’ be more bearable for my daughter in future. 

She also told us she was doing an MA, and her specialist thesis she’s working on is ‘girls with Autism’! 

I think she’d assumed my daughter had already had some sort of diagnosis, but didn’t say this directly. I told her we had an assessment booked next week, and she said she waisted we’d have told her first (at the meeting), as she said it was very apparent to her that my daughter was on the spectrum from what we’d said, and what things she struggled with. That was a relief, as if she can see it and she’s not a trained professional, the assessors definitely should!

they basically ask you a load of really random question and see how you react. they also ask you to do a load of simple tasks. it doesn't really matter what happens they are just there to try and understand.

as for you i would suggest defiantly making tones of notes, everything. even if it seems insignificant it may given context or they may see something you haven't .

from a person who has had the ASD assessment and is a similar age. 

feel free to PM me, i may be able to give you some more information and stuff

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?

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.

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!

Hi Catlover,

You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one - http://www.autism.org.uk/about/diagnosis/children.aspx  

You may also like to have a read of the National Autism Plan for Children to see what you are likely to expect and what you can ask during the assessment. Please scroll down to the bottom of the page and go to page 3 on summary report, page 11 for full report for the Essential Components for a complete multi agency assessment - http://www.autism.org.uk/about/diagnosis/children/national-plan-children.aspx

Hope this helps,

Nicky-Mod