CAMHS ASD assessment or not?

[BurnedToast]

DD aged 13 is due to go for an autism assessment this week with CAMHS. It came about after she self harmed earlier this year, which thankfully stopped. But CAMHS sent some forms for us and the school to compete and as a result we have this appointment. I have a friend waiting for a similar assessment and know they are hard to come by, but I'm just not sure it's the right thing to do.

Dd has a nice group of friends at school , a few fallings out around the time of the self harming but nothing since. She prefers 1:1 or small group friendships and likes alot of time to herself. This weekend is fairly typical in that she went out with her best friend for a dog walk yesterday, joined in with the extended family at a party last night and today she wants to spend the day on her laptop. She always needs time to 'recharge' after being sociable and describes school as 'draining' she's constantly complaining of aching legs and feet and seeks time alone.

Out of school her best friend has ASD so dd is very aware of the symptoms and to be honest I feel she 'plays' on that a bit.

I've been watching her since the appointment was first made, and I can't help but think she's just an introvert with a dash of teen social angst. She does get in a state about silly things. Like she didn't want to go the award ceremony she was asked to attend as she didn't know if it was uniform or normal clothes. But I remember being like that at that age.

CAMHS say the school have reported that she struggles to maintain eye contact and doesn't like working with people she doesn't know. I have noticed the eye contact thing but it's only with people she doesn't know, so surely that's shyness?

I do thinks she's a bit 'different' in some respects. She's not 'out there' and has no interest in being popular. She does odd things like she seems to not want to be part of groups. For example, she refused to go to her old primary school summer fair (her sister is still at the school) as she says she had no friends in year 6 (true that she was on the periphery of all the groups and it was a hard time for her) before she left. I only find it odd because it's a bit of a 'thing' for the kids to go back and all hang out at their old school and for some reason I felt a bit sad when I saw DD was not there, even though she doesn't want to. .. I think it's just the fact that she seems to want to cut herself off that gets to me. Does that makes sense?

We walked past a few girls from her current class when we were out the other day, and she just put her head down and ignored them. It's as though she doesn't want to be part of it all, rather than she can't.

The CAMHS team who are seeing her are just two people, I've looked at the letter and one is a psychologist and the other is a nurse. I thought this was meant to be a multidisciplinary assessment with one of the people being a Dr. I'm just a bit worried that my introverted, socially anxious daughter will be labelled with ASD when that's not what she has. Would it be possible for her to hoodwink them, as I strongly suspect dd would quite like that label of ASD.

www.sciencedaily.com/releases/2016/06/160601084649.htm interesting!

It could be. Autism isn't the same for everyone. Mine has a brain that works too fast for his hand. His English teacher very quickly spotted the difference in the quality of his work when typing over writing.

Has school ever raised the possibility of dyslexia?

DD2 says "I know what I want to say, but my wrist can't keep up with my brain, then I forget what I wanted to say. It never looks the way it was in my brain by the time it gets to the paper."

@BurnedToast - yes it could be ASD. There's a processing issue which makes it very hard to copy from the board or listen and write down. That's the sort of issue that would be addressed and dealt with differently if she were assessed.

Yes, my DS gets extra time in exams, it's made all the difference, and it has carried on to Uni where he is doing very well.

If any of you are still about, please can I ask about anxiety? I've just been talking to DD and she says she has anxiety 'attacks' 2-3 times a day. They mostly happen at school and particularly when she's asked to read out loud or if she see's something she thinks isn't organised. Which is bizarre because her room is a tip

She described it as feeling hot and burning from inside. She also said she has to line her pens up in a certain order or listen to music as this helps control it.

Any idea what that's all about?

That sounds like typical anxiety. Getting hot is a very common physical symptom. Being asked to read out loud is a really common flash point for a lot of kids, regardless of reading ability.

Lining things up in order and listening to music are common emotional regulation strategies (I think lots of people listen to music to relax, or to gee themselves up, for example).

In terms of her room being a tip - is it possible that she likes the way things are "arranged" in it? Would she get annoyed if you were to go in and move things around?

She doesn't mind me tidying up her room.

Does this anxiety indicate ASD?

I've been in shops with her before where she's had to reorganise a messy display. It's not often.

Does this anxiety indicate ASD?

On its own, no. It doesn't rule it out either. To determine whether someone has ASD really does require a specialist such as a psychiatrist or a psychologist to do a full assessment.

Whether it originates from ASD or otherwise isn't really the issue I suppose. I'm just trying to work it all out. If what she says is true, and she's having 2-3 anxiety attacks a day that's really no way to live .

I was diagnosed with Generalised Anxiety Disorder before my ASD diagnosis. I worry a lot about upsetting people, saying the wrong thing, making bad choices, did I leave my straighteners unplugged.. I like things to be organised because they are more predictable than people. I used to hate my Mum coming in and cleaning as a Child, she would move things where she thought they were best and I couldn’t find things! (In retrospect she had issues with obsessive cleanliness and tidying). The compromise we had was that I cleaned it myself from about age 8, that worked okay.

Does this anxiety indicate ASD?

Not necessarily... there can be many reasons for anxiety. But an ASC can be a huge source of anxiety. Finding people unpredictable and hard to understand. And really needing to have those pens lined up!

The clinical psych explained that my DS's aggression was largely down to anxiety, and that his anxiety was largely down to his ASC. When we started to get on top of the ASC triggers he was a lot less agitated.

For what it's worth, the clinical psych also said that the children with ASCs either had the neatest tidiest desk in the room - everything lined up perfectly - or the desk that looked like a bombsite. My DS is quite happy to put things away if they have a defined "place" - so pants and socks go in the washing basket every night, and if I give him a pile of clean clothes they get hung up in the right place or put in the right drawer straight away. But he cannot tidy his room because he cannot decide where to put anything that doesn't already have a pre-defined "place". He just heaps stuff up on his desk and shelf until I insist on going through it with him and telling him where to put things!

She may not tidy her room because she is exhausted after "masking" all day. It may still stress her, but she may not have the energy to plan and tidy.
The lining things up does sound like ASD.

Anxiety is common - Imagine you were suddenly parachuted into somewhere like Korea. You don't understand the language. Everything is unfamiliar. You don't understand the culture, and are trying really hard to watch other people to try to "fit in" and not cause offence. I am sure you would be extremely anxious and get very tired very quickly.

My DD with ASD tells me she cries several times a day at school - on the whole it is ignored as she finds it a huge stress relief, and being left to regain her control works best for her. It's not ideal - but if it works... For your DD she does need to find ways to handle her anxiety but equally school needs to put measures in to help her (and this is before there is a diagnosis), could she have a time out card? A safe place to decompress (my DD ended up eating Lunch in a tiny room by herself).

It sounds as if your DD will really benefit from this assessment. Not because she necessarily has an ASC, but because she has so much going on, so many different issues and difficulties, and so much anxiety. The ASC assessment is a good way to start to find out out what's underlying her anxiety so you can help her adapt her world to her needs. Even if it's not an ASC you will probably get a lot of pointers.

If any of you are still about, please can I ask about anxiety? I've just been talking to DD and she says she has anxiety 'attacks' 2-3 times a day.

anxiety is a HUGE part of having an asc, i'd like to refer you again to the M books i mentioned upthread that describe the experience in detail.

i'd like to ask a) when is the assessment?

and b) why you seem to be so focused on figuring out a diagnosis yourself? i got from earlier in the thread that you don't have overmuch faith in the trained and experienced professionals who you and your daughter have yet to meet.

Thank you. I agree she will benefit from the assessment and we're going tomorrow.

rheTardis I appreciate how my questions are coming across, but it's not quite that. I'm not trying to diagnose her, but I've read some of the links here and listened to a YouTube video from the girls at Limpsfield School and started to put things together and ask DD questions. I want to make sure I have all the information ahead of her assessment so I can pass it on. For example, I didn't know DD started having these anxiety attacks in year 5 before she went in the playground . I don't know much about it so I'm just trying to work out if this is relevant and whether it may 'fit'. It doesn't matter what's causing the anxiety but I do want to get to the root of it to help DD. I'm far more concerned than I was before I started asking her questions.

Yes, I do have some concerns about the way the assessment is being done. For a start it's with a nurse (sorry, but I expected to see a Dr for a diagnosis) but I've been reassured that's normal. But I'm still a bit worried they are doing an ADOS assessment when someone up thread said that's not reliable for girls. And also I can't help but find the whole thing a bit difficult to understand. It's not like you can take a blood test to see if you have ASD or not, so there's part of me that questions it. I can't help that. However, the posts on here have been really helpful in explaining how it's an overall picture with a number of different symptoms dependent on the person so not a black and white concept as such. What I'm trying to say is, yes at the start of the thread I was a bit about the whole thing. But now I'm just trying to unpick what DD tells me and see what it could be. I'm really worried about her anxiety levels

And there some stuff, like the effect on hand writing which has been a revelation to me. I was going to get her assessed for dyslexia but I'm now thinking it's more likely to be a processing issue due to ASD. Not that I'm diagnosing, obviously we need to see the team tomorrow. But I hadn't even known that before.

Re it all seeming a bit vague and unclear...

If there’s any doubt that difficulties could be caused by something other than ASD, they won’t diagnose that.

My DS was undiagnosed and regularly reassessed for 7 years before being diagnosed with an ASD, not because his issues were mild, but because they wanted to make absolutely sure they were all down to an ASD and not linked to anything else.

Thank you, I'm confident they won't diagnose if it's not ASD.

I'm just trying to unravel what's going on in terms of her academic difficulties and anxiety. She does well at school, but there are some issues. Such as her problem with not being able to copy from the board. I'm also not really worried about the anxiety levels and thinking ahead to what to do. I don't know if a change of school to a smaller environment will be needed.

I meant now really worried about her anxiety levels

thanks for your response BT and sorry for being so blunt, reading back i was pretty confrontational

i can see that you're just piecing things together and trying to understand, the way we all do for our kids.

wishing you the best of luck for tomorrow.

If anything, girls are waaay less likely to be diagnosed when they ought to be - I was subjected to the “expertise” of a great many CAMHS/adolescent mental health professionals in my teens, to no avail, until being diagnosed in early adulthood having sought out professionals who actually had a clue about female presentations of autism.
If she is autistic a diagnosis will likely help her understand and accept herself a great deal. When/if she chooses to be “out” as autistic - and to whom - is entirely up to her.

It's common for people with asd to have their strenghs and weaknesses. I think youre doing the absolute best thing for your dc.The being worn out thing is very common,my dd is basically in a coma when she comes back home.

"there are some issues. Such as her problem with not being able to copy from the board."

My dc has the same issue with copying, as I said before we haven't got as far as a diagnosis, but the initial psych report suggested "dc would benefit from having handouts as dc experiences difficulty capturing information quickly in writing. It would also be beneficial for dc to use an ipad or similar to take screenshots of the board that dc can refer back to when required."

So definitely they can put things in place to help. They're also suggesting touch typing to have less to deal with then handwriting.