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.

It is for me.
Have you come across spoon theory?

No, I shall read about it. I've always thought it was a strange term for her to use. So specific and it's the only context I've ever heard her say it in.

It's part of not coping with their environment or out another way, coping with an envirinment others find easy is for a non neuro typical person extraordinarily hard and draining. My natural, hey lovely to see you, let's go to the canteen is fir them a drama akin to role play. The chaos of the canteen for them, liked by me because it involves chatter and grub, is for them a trial of sensory overload. The clatter, the noise, the unfamiliar tastes and lack of structure, the crowd, the enforced and learnt sociability and judging how to act. It's exhausting.

Apologies for those on thread with asd if I have got any of that wrong.

Yeah I was at a comiccon yesterday and had to keep taking breaks somewhere quiet.
And was so tired during and after.
And today I slept until noon.
The noise - even ... say... someone laughing loudly during a panel discussion. Or someone letting their toddler grab me from their seat behind me. Or background noise of the crowd. Or people bumping me. I can't tune it out. It all seems very shocking.
People who know me say 'oh you can't have the severe kind of autism. You're so normal' and I think that if I explained how knackering it is being around them they would take it personally.

It takes me 24-48 hours to have energy after a day in the office.
So like energy for a shower or to do life admin.

I'm not saying I'm typical necessarily but I do recognise feeling worn out.
And I do have an autism diagnosis

Just go for the assessment.
Two of my children have ASD type issues.
The one who was diagnosed at 11 has gone from strength to strength, is happy at uni and has friends ( all nerdy!).
The one who didn't want to be assessed and had a more atypical ASD presentation ( ie, he had friends and coped OKish at primary) is now 20, bombed out of high school and college, only worked intermittently, is wracked by anxiety and low self esteem and seems to blame me. I REALLY regret not trying harder to get him assessed sooner although attempting to sort something out now.
Your daughter does not have to tell anyone about her diagnosis unless she needs help with specific things.

Please go to the appointment. Your daughter is ok at the moment, and thus her diagnosis or lack of doesn't matter. But if she starts struggling more (very common in asd teens), then you don't want to be trying to get the diagnosis at that point, you want to already have it and access the help it brings without a diagnosis wait.

I'm going to call tomorrow and postpone the appointment. It's just not the right time. Thank you for all of your input though.

OMG OP please don't do that.

It may not be the right time for you but this isn't about you. This is about your DD. It's the right time for her. She wouldn't have the appointment in the first place if it wasn't.

I didn't say it wasn't the right time for me!

burned toast I work on an autism diagnostic team. We are a multidisciplinary team but each person is allocated a case lead who will run the appointments, get to know you and your daughter. The other team members are pulled in if it's necessary (eg if we start to query speech and language difficulties, we would ask the speech therapist to do some assessment work). The whole team meets weekly to talk through cases before any diagnosis is given.

It is common for parents to be unsure what kind of can of worms they are opening. The best advice I can give you is to take that first appointment and talk through your concerns. Your dd's views also need to be considered at her age. However camhs will not force you to go through an assessment you don't want. Also be aware it will probably take several months to go through the assessment process even if you do decide to proceed.

When we do an assessment we begin by talking about the child's early years and their development up to their current age. We then undertake observations in two places (usually clinic and school. The clinic one might be informal and based on her presentation during the discussions etc, and the way she interacts with the staff). A formal assessment like the ADOS might well be done (though tbh this isn't great for high functioning girls).

It is a careful and considered assessment that tries to build a picture. For girls social history is especially important. You asked the difference between shyness/ introversion and social interaction difficulties. An introvert is capable of completely typical social interaction, but finds excessive interaction draining. An autistic person can "act" neurotypically but this is unnatural to them. Other kids can almost always tell. It's sad to say that a useful rule of thumb is if other kids describe them as "quiet" or as "weird". Kids have asd radar, but they don't usually understand what the difference is they sense. Typically, introverts won't feel like they don't belong; autistic kids often do.

Most autistic people prefer autistic person. It is who they are and not something they have. It's integral to the way they interact with the world. My son is autistic. There isn't a non- autistic lad hiding away if I could scrape away his autism. It's right through to his core and it's ok.

Thank you FloatingThroughSpace. I feel like delaying is the right thing, particularly after what you said. I just feel like they're rushing us into this. From what I understand the assessment is nothing like what you describe. Dd goes for her interview this week, and then it's us next week. As I said, the 'team' consists of two people : a nurse and a psychologist. I don't mean to be an arse, but do nurses diagnose? . They did say they have a meeting to discuss, but only they would have seen us. And I am pretty sure they are doing ADOS. I think that was on the top of the form we were asked to complete. I don't know for sure though.

I didn't say it wasn't the right time for me!

You didn't, it that's exactly what you meant though. As my previous post, it seems to be about you not wanting a 'labelled' child, rather than what your DD needs. Why is it not the right time for her?

She isn't going to get diagnosed by accident, if she has ASD then the very best thing you can do for her is to have her assessed. If she doesn't have ASD, it will be ruled out at assessment.

OP please don't postpone the appointment.
Autism diagnosis is made through very thorough assessments and it is much more common for the diagnosis to be missed than to be given mistakenly, especially in girls. If a psychologist is doing the assessment, they will have had the training to qualify them to make the diagnosis. Some nurses may have had that training too, or may be involved to help with parts of the assessment.

If your DD is socially anxious and not autistic, then that is what her diagnosis will be and depending on how well she's managing at the moment, they might be able to offer some help with that instead. If she is autistic, there will be support for you as a parent to understand what that means. It will also open up the door for your DD to receive extra support and adjustments at school and afterwards should she need them.

A diagnosis can't give a person autism (I'm not suggesting that you think it can by the way, just that it's pretty common to feel like a diagnosis makes something real). I was diagnosed at 15 after four years of jumping through hoops and dealing with professionals who didn't believe girls could be autistic.The diagnosis didn't change my behaviours or my sensory processing issues or how exhausted socialising makes me, it just gave me a name for it. Having a diagnosis meant that I could get adjustments at school and later at uni, which made it possible for me to sit my GCSEs and A levels. The diagnosis means I am covered by the Equality Act if I need adjustments at work and it means I can get access to support if I need it. In the 10 years since I was diagnosed I can't tell you how important that has been. There have been times when I haven't needed any support and times when I've needed a lot. I think the most important thing for me though was having a diagnosis meant that I wasn't a freak or a failure or a weirdo, my brain is just wired differently and there are other people out there with the same wiring as me.

But out of interest, her social history looks like this:

No issues in nursery (from 6 months)
I recall one her pre school teachers calling her 'quirky'. I never asked what he meant and I only thought about it recently.
In reception the teachers said she often played alone or stayed close to the playground supervises but I put it down to being 4 in a busy school.

No issues in years 1-4 other than not getting invited to many parties. Had friends but not a 'best' friend or fixed group. Tended to get on better with boys.

Year 5 and 6 went from bad to worse. Her friend left and she was distraught. Tried to get into several other groups but to no avail. I thought about home schooling but we got through it. She used to hide in the toilets reading a book at break as she had no one to play with. the school were hopeless when I reported it. Her one friend at the time joined the 'popular' girls and they excluded DD. I know this as unknown to Dd, I was made aware of messages being sent between this group to exclude dd.

Moved to secondary. Made friends with her best friend who has aspergers. Loads of issues culminating in her friend leaving in first term. Dd made friends with her current group, all stable since. Never seen her so happy with friend.

I could see how this may all flag ASD. But equally, it maybe a child who was bullied in year 5/6 (I consider exclusion to be bullying, not that it was treated as such by the school). Lost her confidence, attached herself to another list soul at the start of secondary (the best friend was very troubled at the time,) but had now found her feet.

She'd never had an issue with changing routines, or things being ordered or making eye contact (only recently noticed this if she doesn't know someone, but I think of it as a teen thing).,

Just a few points from someone whose DD has been through this process. We had no thought at all that she has ASD throughout her childhood, although she did suspect. She was finally diagnosed at the age of 17. Like many other girls with ASD, she masked brilliantly, went under the radar at school, but struggled hugely with friendships. Looking back, some of her behaviour as a young child is clearly indicative of ASD, but we didn't know to spot it. As she went through the teenage years, her struggles became harder, she developed significant mental health problems and self harming behaviour. This ultimately led to her ASD diagnosis. She has serious Social and Generalised Anxiety, and often I still find it hard to distinguish between these and ASD. For her, the diagnosis of ASD was a validation that there is a reason for her struggles and an insight into her behaviour. It helps us, and others, understand her too. We will never know how different her life would have been if she had been diagnosed earlier, but I strongly suspect it would have helped her. I've no idea whether your daughter has ASD, but if she has I do think it is generally better to know. I wish you all the very best with whatever you decide.

Baritriwahsahys. No it is not about me not wanting a 'labelled' child and you can't make assumptions based on a few posts on here. It's arrogant of you to say the least. It's not the right time for dd because she's in such a good place in herself. I strongly suspect a diagnosis would significantly set her back. And even moreso given it sounds to me as though the assessment is being rushed.

No it is not about me not wanting a 'labelled' child and you can't make assumptions based on a few posts on here. It's arrogant of you to say the least.

Eh? You literally posted asking assessment or not and I'm arrogant for giving an opinion based on what you have said?

Fuck sake OP.

You're completely missing the point as you know full well. I wanted to know whether to get her assessed based on my belief that it would set her back, and my fear she will be misdiagnosed as her symptoms could very well 'just' be being an Introvert. On that basis I felt it wasn't the right time for her. You the. Turned it round to say it wasn't the right time for me as I don't want a 'labelled' child therefore suggesting I was putting my feelings before DDs welfare. That is the absolute opposite of what I'm trying to do. End of.

Your fear of her being misdiagnosed is irrational.

Maybe so. But, you only have to read the list of symptoms on the link someone posted further up and you'll see alot of it is vague to say the least. It could very easily apply to a teen who prefers her own company and avoids big groups of people. We live in a world there the extrovert is celebrated, most people expect teens to be outgoing so when they're not they stand out. I don't think that necessarily needs a diagnosis.

burned I am a bit down that the message you took from my post is that you should definitely postpone. What I suggested was that you go along and discuss your fears (leave DD at home if you want) about how the assessment works and whether to go ahead and then make a fully informed decision based on the discussion they have with you.

It's only a few months since your DD was reportedly self harming. So whilst she is ok now, will she always be? Incidentally most youngsters who are told they are autistic in an empathic way using a neurodiversity model, actually feel a whole lot better once they understand who they are and why they find some things difficult.

Anyway best of luck to both of you.

Honestly OP, they won't diagnose her if she doesn't have it, although I recognise the concern, it was something I worried about at the beginning. IME sometimes just talking to professionals who are experienced makes young people feel listened to and their issues noticed in a way that is therapeutic in the end even if it had seemed inconclusive at the time.

burned your last post has irked me a little bit.

As specialists in the field we CAN tell the difference. We don't go around clapping diagnoses on anyone who isn't the lead part in the school play or at the centre of every party, you know!

It's like presenting your child at the doctors with a rash. You have to have a certain amount of faith in the training and diagnostic tools of the doctor to believe they can differentiate chicken pox from acne from measles. They are all spotty "rashes", but they are not at all the same to a specialist.

FloatingThroughSpace I posted DD's social history a but further up on this page as you said that's relevant when assessing. Can I ask you if you think anything in there would make you think definitley assess?

I know what you mean about her being alright now, and will she always be. I have thought of that as few posters have said stress makes it worse. But I'm also of the mind that we cross that bridge when we get to it. I'm not saying I don't want to assess at all, just not now when she's doing so well.