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.

Wishing you and your DD luck.

Reading this and thinking this all describes me as a child, teen, and my daughter, and my husband/ sons to some extent.

I've often thought the same when reading about ASD, but despite lots of contact with the GP over 20+ years (on AD's for life), counselling, and several lots of CBT both NHS and private, ASD has never been suggested.

My DD struggles socially and has always hated school despite being predicted top grades. She's also had a year of therapy and saw the school pastoral team weekly to chat about her anxieties. Again ASD has never been suggested.

How does the suggestion to diagnose come about? Have those of you who have had children assessed pushed for it or has a doctor or school suggested it?

I just tried the tool Neome posted and it said my score of 33 indicated significant Autistic traits.

How does the suggestion to diagnose come about? Have those of you who have had children assessed pushed for it or has a doctor or school suggested it?

a referral to the neurodevelopmental team was suggested at her first CAMHS assessment (for anxiety/depression).

My son has ASD, admittedly he's much younger than your daughter though.

BUT he sounds very similar. He won't talk to friends out of school as it's a different environment and that matters to him.

He does have friends though so any idea you have that autism = no friends or an inability to keep them is wrong.

Your daughter was self harming, whatever the reason for it, it's not usual behaviour. Don't stand in the way of her getting help and support as I truly believe that in itself is unsupportive and slightly cruel (despite knowing that isn't your intention and you are obviously a caring mum).

Well done OP, I hope all goes well

(Writing as a parent who has been through this )

Lots of Women have to ask for the assessment. GP's might even if they spot it (most likely if they have close experience of it themselves) may think an adult doesn't need a diagnosis.
In my family I suspect one DC is on the spectrum, but they have been told by one professional "there is nothing wrong with them" and by another they were asked if they thought they were and as they said No the professional didn't even explore this.

I'm in the middle of the same scenario as you op and really debated whether to pursue a diagnosis for my dd. What I would say in favour of you getting her assessed now is that, at 13, you have a year or so for her to come to terms with her diagnosis and for strategies /interventions to be put in place before her gcses. It may be that she'll get extra time or other provision /accommodations which could be really helpful.

Thanks once again. Someone asked how we were refereed. I think we've been lucky to be honest. The self harming happened last year and into this year. She told me about it in February and I went to the GP the next day and got referred to CAMHS. We were seen 8 weeks later, during which time she had private counselling. The CAMHS psychologist was very good and sent some forms out for us and the school. The appointment came though for the full assessment in less than a month after the forms were sent back.

I meant referred!

DD so hates noise and always has. She has found noise in the classroom very difficult at times, but she's at a big, noisy comprehensive school. But looking back, when she was little she would always find parties difficult due to noise.

I'm a bit worried as I'm pretty sure they're doing the ADOS assessment, but we'll see what they say.

I've done the quiz Neome linked too and got a score under the possible ASD threshold. I'm. Not surprised by that as I don't think I have autism, but I'm definitely an introvert who loves time alone.

I've always found that a bit odd, but does that ring a bell with anyone?

Yes it does, though the reasons may vary. Your DD values being around other people but maybe it's just tiring for her, fitting in with social norms that don't come naturally to her. Or coping with sensory issues. She needs the decompression time.

Quite a few of the things you've mentioned are at least potentially ASC issues. It really takes a skilled professional to nail it down from the huge range of broad possible signs to the specific issues that an individual child has. A multidisciplinary assessment isn't usually done all at once, though the process varies in different places. DS was assessed much younger - he had initial sessions with a paediatritian, then a clinical psychologist, and then a language therapist (who really nailed DS's communication issues, an eye-opener for me to see my chatty articulate child unable to negotiate a change of topic.) It depends a bit on what issues come up, some kids see e.g. an occupational therapist as well. The clinical psych checked his anger issues (not all kids with ASCs have anger issues but that was how the anxiety affected my DS). The ped looked at the broad range of DS's abilities.

My DS (now a young adult) is outgoing and has friends. He recently supported one of his friends to get assessed for ADHD. He has had very sociable periods and also been through very difficult lonely periods. His diagnosis got him extra support that helped him through socially.

For me, the most important factor is that your DD wants the assessment. There's no real way to predict what effect it will have on her and as her Mum of course you want to protect her and do what's best for her. It's a shock that it's come through so fast and it must be hard to let her take that step into the unknown, especially if she is in a vulnerable place. But she's obviously thought about it, and she's lucky that she wont be alone with it if she does have a diagnosis as she already has friends with the condition. She can take that step with your support.

DD2 (11) has ASD, and she was assessed in December 2018. I sat through her ADOS (she was too anxious to go in without me, so they sat me in the corner). What seemed to me to be really quite childish tasks (she had to make a story out of random objects at one point, and I honestly thought she would say "I'm 11 and I don't play with plastic toys now...") gave such a lot of information to her assessors.

They pick up on everything. Intonation, pattern of speech, eye contact, initiation of interaction, vocabulary, interests, ability to describe emotions, etc.

DD2's report, for example, noted that she used the word 'ambushed' three separate times when describing a picture story that she was asked to look at. It's an unusual word for an 11 year old to use, especially three times. She was unable to describe how she felt when she was angry, except to say that her hands get sweaty. It really was so detailed.

DD2 is always exhausted when she comes home from school and she answers questions with one or two words. If I ask her what the best bit of her day was, she says 'coming home'.

DD2 has friends now, in year 7, but it is a very small group who accept her for who she is and accept that she joins in when she wants to.

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.

I wouldn't necessarily interpret it that way. I would see it as (possibly) a reaction to unexpectedly seeing her friends outside their usual context and either not knowing how to respond at all, or not being able to access the appropriate response quickly enough. The problem is that other people may well interpret that behaviour as her not wanting to be friendly, even if that's not the real reason.

Completely unscientific thought here OP and not one to actually do before your appointment but I wonder what you'd predict for your DD's answers on the quiz and what her actual answers would be? For those of us who are neurotypical its not always easy to empathise with someone on the autism spectrum!

Thinking ahead, if DD is diagnosed with ASD, what should I expect from the school? Should she automatically go on the SEN register?

That's interesting about the context of social interactions AmaryllisNightansDay. She said they were talking about her which I presumed was down to being with me.

The point about language is interesting. I do recall her vocabulary being very good from a young age. People would comment on how articulate she was, but maybe she was copying. I don't know.

She seems keen to be tested which is interesting.
Despite everything, what I love about her is her strong sense of self. She's always done her own thing and not been dragged along by the crowd. When she started year 7 there was a girl in her class being picked on. The girl is in care, so she's vulnerable and DD stood up to the other girls and told them to stop. She's never been afraid to stand out whether that's behaviour or how she dresses (pretty conformist, but more alternative than many girls of her age). She's about to get her second award from the school for behaviour such as this. I remember her last HOY said she wished she had more like her as she's so accepting of difference.

We had my niece over on Saturday who's much more socially conventional than DD. I love my niece but she's at that phase of (14) wanting to be in the crowd. We were talking about what some of the kids were doing from her old school, and she clearly categorised them into 'popular' and 'not popular' and whether she would bother with them as a result. It all seemed quite arbitrary and afterwards DD said, why does DN do that? Who cares who's popular and who's not? It's just weird.

The other thing I've read about is the problem with struggling with concepts. Dd has always struggled with maths. Is this something that maybe linked to ASD?

She said they were talking about her which I presumed was down to being with me

Yes, it could be teen stuff - my DS went through a phase when he wouldn't walk near DH and me.

Dd has always struggled with maths. Is this something that maybe linked to ASD?

My DS is the exact opposite - he said himself "good at maths, not good at people". Which fits the Aspie stereotype. But that is only a stereotype. we've met a lot of kids with ASCs and they are all so very different from each other with very different talents and abilities. So it could be linked to an ASC or it could be something separate.

My DS had some excellent vocabulary skills but his emotional vocabulary was very limited and he still finds it very hard to communicate emotions. And his non-verbal communication was up the creek. Interpreting voice tone, knowing when someone was joking, dealing with non-literal speech. Handling mixed messages - the mess if a teacher gave an instruction in a joking voice tone or tried to "lighten" a scolding with humour. He has learned to cope better over the years but I am still careful to line up my voice tone with the content of what I'm saying and use a calm serious voice for a serious message.

It all seemed quite arbitrary and afterwards DD said, why does DN do that? Who cares who's popular and who's not? It's just weird.

Your DD sounds lovely, whether she has an ASC or not.

there are two books i'd recommend to anyone looking to understand autistic girls' experience. both written in collaboration with students at limpsfield grange. both echoed incredibly strongly for me and my girl.

m is for autism
m in the middle

@BurnedToast
You asked how it helped at school.
Teachers were sent a memo asking them to be extremely clear in instructions to DS. He just doesn't get that if a teacher says 'take a look at the questions on p19 for homework' the teacher means: complete p19 for homework. He thinks they mean open the book, look at the page, close the book. Then he'd get really upset when he got into trouble for not having done the work. So teacher now know to be specific.
Teachers also understand that he masks massive social anxiety and has a very flat tone of voice and a very unwhelmed expression in his face, even when very excited by stuff. That used ot annoy them as they expected him to show enthusiasm or at times thought he was being sarcastic. They now know to take at face value what he says. So if he says in a very dull bored tone: yeah, sure, I'd like to do that, they realise he really would!
It's small stuff like this. basically - he';s never had a detention since being diagnosed because everything he got in trouble for was a mismatch between NT behaviour and ASD behaviour, rather than him being actually naughty.
We also got loads of advice on how to help him get organised as chronic disorganisation and very poor time keeping are classic signs. (I don't know if this is true in girls as girls manifest ASD very differently I'm told, although ime, female tutees I've had with ASD also have this problem.) DS2 is now a very organised and methodical worker and he certainly isn't by nature.

Growling, "He just doesn't get that if a teacher says 'take a look at the questions on p19 for homework' the teacher means: complete p19 for homework." I have to admit that is so unclear as an instruction that I might not understand that either - it could genuinely mean look at these in advance and we'll go through them in the next lesson!

What you say about flat intonation and expressionless affect does make a huge amount of sense - it is excellent that your ds' teachers were taught about this.

This thread is so interesting - it sounds as though from the point of view of mental well being a diagnosis is very positive.

Your dd sounds very similar to my dd who is also 13. Introverted, finds school overwhelmingly noisy/tiring & needs a lo

Thinking ahead, if DD is diagnosed with ASD, what should I expect from the school? Should she automatically go on the SEN register?

I have one who was diagnosed before high school (2 actually but the other is still in primary) he went up to high school and I met with theSEN department. They told me many ways they could help, simple things like a pass to leave classes early because he might not cope with the crowded corridors, and deeper help like time in the SEN base etc. I said I wanted to let him decide if he wanted these things and that I only wanted them to step in if he was struggling.

Turned out he sailed through high school, found 'his people' was highly academic and focused. He got help from the SEN base for his exams they made sure he had a laptop and extra time - he never needed the time but the laptop was an absolute god send as his brain to paper time was hampered with him handwriting.

I can honestly say it has never help him back to have a diagnosis, he only ever had positive experiences through school.

• never held him back

@Baritriwsahys - yes - I forgot all the exam help. He can use a laptop all the time, as his handwriting was exceptionally slow. And he's allowed his phone to photograph any homework written up on the board as he doesn't have time to copy it down. Those allowances really helped him feel less stressed and less behind. He felt he was 'stupid' because he couldn't keep up with the others, but as soon as he was allowed to type not write longhand he started meeting and surpassing his targets.

Thank you. Does ASD affect writing speed then? I've been considering getting a dyslexia assessment done as she can't copy from boards and finds she can't keep up with teachers when she has to write down what they say. Would that be ASD?