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.

They won't diagnose autism just because she's shy! Lots of the questions will refer back to her babyhood and childhood. Autism can present in very physical ways at a young age. I wish we'd known about DS2 earlier than we did. His diagnosis was around 12/13 years and it's really helped him immeasurably. Hard for him at the time, and he chooses not to disclose it to most people- none of his friends know, but teachers do and that has made a massive difference.

Fair point FloatingThroughSpace about professionals not slapping the diagnosis on. It's just I'm so fearful of the effect. It's a big deal to be told you have autism at 13. It will affect how she sees herself and will be a carried with her forever. But equally, not having a diagnosis will as well. It's just the timing I'm not sure of. Everyone said it would be a 6 month waiting list and it took a few weeks. I know we're lucky, but it's all a bit scary.

Growlingbear can you tell me how it's helped at school?

Dear OP, you know your child better than any of us. Has she said to you that she is dreading the appointment or dreading the possibility thst she has ASD?

It has just occurred to me that it's possible that she's convinced she has ASD and has been quietly pinning her hopes on this appointment thinking she will "finally be understood". I do hope you don't inadvertently trigger the very thing you want to avoid.

burned I don't know your DD so I can't really give a proper answer of course. However the social history doesn't scream "not autistic" to me. With girls we often get a history of fractured relationships to the bewilderment of the autistic person (tick at primary), social behaviour on the peripheries (tick again), playing with boys as they are more socially straightforward (tick) and over reliance on a single friend (tick). However you'd need to triangulate with observation and assessment, we'd never diagnose just based on a history.

Your last descriprive post of your daughter at primary school sounds very similar to how asd presents in girls, often it's as the girl grows older that she starts to have difficulty as her peers move ahead of her in terms of socialising.
You seem wary of her having a label of asd. The other labels that come from not having a diagnosis include- lazy, standoffish, quiet, shy, can't be bothered , underachieving, oversensitive, loner- generally negative terms it can be hard to overcome as an adult. I was diagnosed as an adult in my early 30s after my daughter was diagnosed as I recognised so much of her experience in my childhood and my research into growing up as an autistic/ aspie girl.
Your daughter being worn down after school, sounds like she has exhausted her ability to socialise and mask and like sge needs time to acclimatise and regulate.

If she is not autistic, she will not be diagnosed. The psychologist will be trained in diagnosing, as will the nurse. My daughter had her assessment with a psych and a speech and language therapist nurse, they were excellent and spotted things that I hadn't, subtle signs, which is where their specialist training comes in. If your daughter is autistic, then she will know and be able to learn work arounds for uni, college, when she is in the workplace etc. If you don't allow her to be assessed, and she has autism, then she won't have the same support from student services etc. (Sorry that was longer than I intended! I have a habit of info dumping)

If take her for the assessment. If she’s not got ASD then what harm will it do and if she does it’ll help get any extra support she may need.

As for the assessment there were questionnaires etc filled in by us and school as well and they took this into account as well as the actual assessment. It was also carried out by “only” 2 people, an educational psychologist and a SALT, and there was also an OT who questioned me and my husband. They are trained and qualified to make these diagnoses. They don’t need to be a doctor.

I honestly don’t get why you wouldn’t go, but I guess it’s up to you.

That's good point Neome she says she doesn't care of she's assessed or not. But she never says much about anything!

Thank you Floatingthroughspace. That's very interesting as I would say a yes to all of those for dd. It's becoming clear it's bit so much if she'll be assessed, but when. I know I need to do it, I just want it to be the right time.

Incidentally if she gets diagnosed, she doesn't "have autism". It's not like "having a headache". She doesn't have autism in a sort of bag she carries around. People are autistic; it's who they are, not what they have. Autism is inseparable from the person. It's a bit like homosexuality in that way. You don't "have gayness", you "are gay". It's part of you.

Dd comes home from school everyday and goes upstairs for a few hours as she says she feels 'worn down' by it. I've always found that a bit odd, but does that ring a bell with anyone

My son does, same as if we’ve maybe had a busy day socially/out and about.

He has ASD.

Why would they be “rushing her into it”? What agenda could they have for that?

It is up to you as I said. But ultimately ASD or not she is who she is and going tomorrow, and possibly getting a diagnosis won’t change that. But it might have an impact if she does need some support. I think you’d be letting her down not to go. But she’s your child and it’s your decision.

Hi OP, my 12 year old was diagnosed with ASD very recently. Currently her symptoms are very mild and she has a strong friendship group and no issues in school. They waived the ADOS because they knew that many high functioning girls fly through it because if is based on autistic boys and men. Do I wonder if it's right? Yes. Do I think if will effect her life negatively if it's wrong? Not at all. My daughter is an extrovert, I think a lot of the time extrovert high functioning girls get missed even more than the introverts. I'm pleased she has this diagnosis if she needs it.

My daughter's two best friends are both on the autism pathway too (as yet undiagnosed) one self harms. Getting on better with others with autism is actually a pretty big symptom.

Your daughter has a lot of flags for mild autism (I know mild and high functioning labels are coming under criticism at present but there IS a big difference on the spectrum of how much autism impacts someone's day to day life and I'm not sure how else to describe it). I don't think a neurotypical introvert would crave the label anyway, that in itself is another symptom. Don't postpone the assesment. You can tell them that you are skeptical of autism and they won't rush to diagnose if you are not confident.

I've just remembered that I was offered testing for DS earlier and put it off for a couple of years before deciding to do it before high school.

Is her behaviour at school normally pretty ‘good’? Does she follow the rules? If she is masking at school and behaving how she perceives she ‘should’ be behaving, then her being shattered is a natural consequence. I always need time to wind down after work because I mask while I’m there.

I’d say if she’s in a good place, now is a good time to do her assessment! Wouldn’t it be worse to do it when she’s struggling? For me (yes okay I was an adult so somewhat different) getting a diagnosis was a huge relief. Finally understanding why I am like, that I’m not like other people, that it’s okay to need time to recover after socialising, that I have less energy than most people. My diagnosis has helped me understand myself and be far kinder to myself than I ever used to be. I still have thoughts of self harm but I can detach from them in a way I never could before. She either is Autistic and will benefit from a diagnosis, or she isn’t and it can be ruled out.

Yes the ‘signs of ASD’ are vague because it’s a varied and complex spectrum, there’s no ‘one size fits all’ diagnosis, but diagnosis is made if someone has enough of the identifiable issues to meet the diagnostic threshold. If she doesn’t meet it, she won’t be diagnosed. Oh and FWIW I was diagnosed by a nurse trained in ASD assessment in adults. She did the DISCO assessment and then inputted the data discussed into and algorithm which confirmed my diagnosis.

Maybe it’s worth phoning tomorrow to discuss your concerns with the doctor or nurse in the team, they may be able to advise and help you in a way that strangers on the internet can’t?

I thought this was meant to be a multidisciplinary assessment with one of the people being a Dr.

The Psychologist will have a Professional Doctorate in Clinical Psychology so will be the DR present. There will be a lot of information gathered from different professionals (if involved), including school and parents and the CAMHS personnel will carry out their own assessments and only then will diagnose (or not). Therefore making the whole process multidisciplinary. Please don't postpone the appointment- this is not about you. It's about your DD and the help she most likely needs in certain areas.

you not wanting her to be autistic won't make her not autistic.
her not having a diagnosis won't make her not autistic.
her having friends doesn't make her not autistic.

her having a thorough expert assessment and being found not autistic will make her (probably!) not autistic.

take the expert assessment, they're not handed out like sweeties.

Part of masking is saying what people want to hear. Your dd is doing that.

FFS OP CAMHS didn't pull the stops out for my dd when she was cutting with razor blades, taking 6 paracetamol at a time and witholding food. They have pulled the stops out for your dd because they sense red flags, possibly due to feedback from school. It is rare they do.

You need to fulfil your duty to your dd as a mother, her principal advocate. She has been clear she wants this. The red flags are a mile high.

It's not about you, it's about your dd. Stand up straight, pull your socks up and bloody well get on with it. Don't end up whining on here that she's developing severe mh problems in two years and CAMHS won't help because help has previously been refused.

You might find this interesting to have a go at yourself

psychology-tools.com/test/autism-spectrum-quotient

CAMHS nurses are pretty knowledgeable, they tend to have an awful lot of real-world experience. And whilst I know that you are concerned that your DD's history 'looks like' ASD and could lead to the wrong conclusion; it really doesn't work like that. Her history is a factor to look more closely and CAMHS will be largely looking at how she presents. In my experience, mental health nurses / LD nurses are very good at understanding the that lots of children have periods of anxiety / introversion / some obsessive behaviours and that these do not mean ASD. They really aren't likely to jump to an ASD conclusion without some very clear application of criteria.

I've spoken to DS and shared my concerns about setting her back in terms of mental health. She said she still wants to go ahead with it so that's what we're doing. I'm also going to call the clinic tomorrow and try and speak to them. Thank you all for your advice.

i also echo previous posters that the best time to be assessed is as soon as possible. that's been my (autistic) experience and that of my (autistic) teenage daughter. the fact that she's currently stable is a supporting factor in helping her to deal with the process, regardless of outcome.

That's absolutely the right thing to do. Well done. Please update us and come back for support. Some of us have done the hard yards already and are through the other side and can help, really we can.

She is far more likely to not be diagnosed with ASD when she is in fact on the Autism Spectrum than to be misdiagnosed with it if she doesn't have it.

Women and girls are often misdiagnosed with a wide range of other issues or mental differences when their core problem is ASD. I know several women who were in and out of various treatments for years because they didn't understand why and how they felt and thought differently to others.

My eldest child has Aspergers and ADD traits and a proper diagnosis would have helped him substantially. I had concerns about him from an early age but his primary school said they saw no sign at school other than that he was "a bit quiet". I did not pursue a diagnosis at that time as I thought there would be mo benefit.

When puberty hit it affected him badly. Initially he still showed no signs at school as he masked it well. By the end of his Y9 he started to derail. It started with not doing homework, but by the first term of Y19 he was regularly walking out of lessons, swearing at school staff and being violent at home. He was permanently excluded just after Christmas. No differentiation had ever been made for him and he was required to fit into the one size fits all model due to no SEN being apllied. At that time I decided to request a diagnosis, which was way too late. He refused to take part in the assessment procesd and the Educational Psychologist, who visited him at his PRU, narrowly missed having a chair thrown at her head by him. She could only complete a partial assessment, which was that he showed clear traits of ASD, most likely Aspergers, and ADD. Had he been diagnosed earlier we could have supported him better, as could his school. He is now 18 and stuck in a shit job, watching his old classmates getting ready for university. He was predicted As and A* (in old money) but was unable to achieve anything like what he was capable of. Things really came to a head for him when he tried to kill himself 18 months ago but, mercifully, refrained at the last minute.

I am not relating this as a scare story or a comparison but in the hope that it shows the potential for harm that not exploring a diagnosis could bring.

ASD can often have times where things seem worse and others where the child "fits in" better.
Puberty causes a lot of troubles - and that may well have been part of your DD's issues in year 5 and 6 at primary school. But she is just about to hit another one of those bumps - which may explain her present crisis.
The "signs of ASD" can be subtle and confusing. EG. my DD had very advanced language skills at 3, she would come out with very advanced vocabulary. However what she didn't do was make the mistakes common in small children's language such as saying "I goed", she wasn't playing with grammar she was copying/parroting. I was proud of her skills, but didn't notice the lack of normal mistakes.
My DD often denies her diagnosis (quite common in 13+ year olds), but even then it does give her the freedom to not conform.