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.

She sounds an awful lot like me at the same age. I was finally diagnosed with ASD at 34! I found a good group of friends at senior school after struggling for years, some of whom I’m still in touch with. I find making friends and keeping them difficult but once I trust someone, these friendships are usually long term.

She is very unlikely to be diagnosed as having ASD if she doesn’t have it. It’s a comprehensive assessment where you have to meet a certain threshold to receive a diagnosis. Turn it on it head, how would it be if she wasn’t assessed now and it turns out she does have it? I went right into adulthood knowing I was ‘different’ without knowing why. I have awful self esteem, struggled at uni and at work because of it. I cried when I was diagnosed because I finally understood why I was different. Most of the time now I embrace my diagnosis but sometimes I still feel like I’m fighting against it. I wish I’d found out earlier. Equally if she isn’t on the spectrum, it rules something out and she may be diagnosed with something else as a consequence of it being ruled out. I would definitely advise going ahead with the assessment.

Thank you PupsandKittens and sorry to hear about the bullying.

dart.ed.ac.uk/research/nd-iq/ analysis of this research is in early stages but seems to show that autistic people communicate well with other autistic people.
(Hoping I've linked the right thing. It's definitely the right university )

Most of my friends are either autistic or have other histories that give them insight into the kinds of barriers autistic people experience.
I like having friends.
Not everyone with autism does but many do.

Friendships get harder in teen years and if she had ASD that makes it even harder.

It’s quite often genetic too, while affecting people to different degrees so your normal may not be typical if you see her in a room of her peers.

Bite their hand off, Camhs are really hard to get to see. What’s the worst that can happen?

OP, your attitude is extremely small minded. I think you need to do some research on the condition ( particularly in females)

Also I wish people would stop calling us “Autistic people”. We are Humans Beings, that have just so happens to have autism.
Sorry but I hate it, as it makes me feel like I am a different species to everyone else !

The worse that can happen is that they get it wrong and she ends up with a diagnosis that doesn't apply. I just can't see his the way she is is any different from anyone else who is introverted and socially anxious. Being told you have autism is a big deal. It's not something to be taken lightly as it will affect how she sees herself. It could also be a positive thing and help her understand herself, but it's the flip side of that I'm worried about. I just don't think she has enough obvious signs to take the risk. Is it normal for the assessment to just be done by a nurse and psychologist? They want to interview us a week later as well.

Pups I feel like that but apparently it’s the preferred term. I think of myself as a ‘person with Autism’ but it seems consensus is that most people prefer ‘Autistic people’.

IAlso I wish people would stop calling us “Autistic people”. We are Humans Beings, that have just so happens to have autism.

Sorry but I hate it, as it makes me feel like I am a different species to everyone else !

I'm sorry. I said autistic people. I also am autistic. I was just trying to say to OP why her DD May have been drawn to her particular friend group. Didn't mean to offend:

Sorry for using the wrong term.

The assessment process will include you giving a very thorough developmental history so it won't be based solely on what your dd says or does. Two people of two different disciplines is multidisciplinary, at least one will be Ados trained and psychologists are doctors of psychology.

The worse that can happen is that they get it wrong and she ends up with a diagnosis that doesn't apply.

It's very very very unlikely this will happen.

I just don't think she has enough obvious signs to take the risk.

What risk? They don't toss a coin you know. Diagnosis is quite complex and unless she meets the criteria she will not be given that diagnosis.

It’s a complex multi discipline assessment which takes info from birth, parents input and school input. Considering how hard it is for girls to get diagnosed it’s very unlikely they’ll get it wrong. It’s a platform for help and understanding not a curse.

Re aching legs and feet - is she hypermobile?

Rather than just calling me 'small minded' have you got any suggestions on where to read about girls with autism. I've listened to loads of podcast and been on the NAS website and I'm none the wiser. To me, my dd could be an introvert with social anxiety or ASD. I can't see where one ends and the other one begins.

As I've said, the risk is to her mental health. I know they don't toss a coin. But I can't distinguish the symptoms I see with my DD and someone who is just an introvert.

CatalogueUniverse I don't know if she's hypermobile. The achy legs and feet are an odd one. She can walk for about an hour before she has to sit down. I've asked the GP about it but been given the brush off.

But I can't distinguish the symptoms I see with my DD and someone who is just an introvert.

But you are not a professional 🤷‍♀️

Try this
everydayaspergers.com/
www.autism.org.uk/about/what-is/gender/stories.aspx
www.taniamarshall.com/
autismawarenesscentre.com/aspienwomen-adult-women-with-asperger-syndrome-moving-towards-a-female-profile-of-asperger-syndrome/

Re hypermobility
Have a look at this
www.pulsetoday.co.uk/clinical/toolbox-the-beighton-score/20005104.article

Hypermobility is often benign but does still have an impact on physicality.

Thank you.

If your daughter has ASD it's in her interested to get her diagnosed. There are no risks - she doesn't have to tell her friends. I know several students with ASD, where their friends do not know their diagnosis (but several who are proud of their diagnosis too). My son has a really good set of close friends and had an ASD diagnosis.

It's unlikely you will receive a positive diagnosis if your daughter doesn't have ASD (if anything some girls are missed, due to masking), so unless she's wanting to join the Navy (one of the few employers who say ASD is precluded) then there's not really a downside.

OP I'll try briefly to summarise dd. She is 21 now.

At primary an Island. Flashes of brilliance that were inconsistent. Mildly dyspraxic, shocking handwriting.

At secondary struggled to fit in and neved felt safe although it was a hellish cohort. Some mild self harm at 11/12 for which she had some private counselling.

Moved her at end of yr 8 to a more nurturing environment. She felt there was something wrong and suspected asd but I saw no markers and swept it aside. Fast forward to gcse year and self harm became more severe. Cutting and ods. I did not know - she masked well. Trajectory of 6/7 As 5/6 A's reduced to 3A, 5A, 3B. She went to GP and asked for help. GP phoned me and said she needed an emergency CAmHS referral. We moved. New area had CAMHS in crisis and she didn't meet threshold.

Did two terms at new school and anorexia kicked in. She was out of school for a term and moved again repeating Yr 12. A private psych diagnosed anxiety and depression in this time and diagnosed propranolol, fluoxetine, etc. And vitD.

Started new school and self harm started again. After term two was assessed for ASD and ADHD. Had a crisis just b4 exams and took a small od. Got results of assessments. She had ADHD/ADD with some autistic traits but not enough for diagnosis. So many dots joined up.

No teacher had ever raised a concern. She was well behaved and high performing. The crisis started as soon as the juggling got too much. She always had friends and empathised with those were neuro atypical. We thought she was v kind and empathic.

Ritalin started at the end of yr 12. She started to recover and went on an upward trajectory. She aced her A'Levels and applied to Oxbridge. She has just finished her first year with the equiv marks for a high 2.1.

She had no family issues in the background. It has been an emotional roller coaster and if we had been able to fund private care she may have dropped out entirely with catastrophic effects for her future and self esteem. CAMHS never ever wanted to know. Additionally if I were not v resillient I could have had a break down.

Please. I implore you. Please accept this assessment with open arms. She knows, help her to know and overcome. Not all stories have a happy ending. It nearly broke her and without money to throw at it would undoubtedly have done.

Sorry I take it back, I didn’t read all your replies ( and then my iPad shutdown just as i was about to send this message)

Oh she had all sorts of aches too.

Sorry to hear about your DD OhTheRoses. That's just awful. 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?

Yep! And much of it could have been avoided had anyone taken her, her, concerns seriously.

Is this 'worn down' thing part of ASD?