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ASD Pre- Assessment Forms - Concerned About Getting It Wrong

(11 Posts)
RockinHippy Thu 03-Jan-19 13:52:56

DD now 16 asked to be assessed for ASD some time back. She definitely has traits, but has other diagnosis that can explain a lot of it, hEDS & Functional B12 Deficiency, with SPD, POTs etc as symptoms) though perhaps not all symptoms. I'd guess she's very high functioning in that, bar anxiety, she's learnt to mask it all extremely well & school never sees the hysterical melt downs when she's overwhelmed. She saves it all up for home. She can hide a full blown panic attack in plain site. School are supportive of the assessment, but DD has said she feels they would be far more understanding of her problems in class if she was diagnosed with ASD, which I've got to admit I can see why she feels that at times, so a bit concerned as to how well they actually get it. We previously hadn't considered ASD as she didn't have any developmental delays as our friends autistic kids did. I now know that it's unusual development, rather than delayed that is a pointer to ASD & she was definitely that in that she was massively ahead in everything, which lead to the G&T tag in primary school.

I've now received a "Pre Assessment Form" from CAHMs. It's a list of questions & my answers will dictate whether she gets seen for Assessment at all. The questions are very minimal & don't allow me to get across her issues at all. Our experience of local CAHMs has been that they are stretched to the max & will do anything to "lose" kids from the system if they feel they have support at home. This has definitely happened in the past, one actual appointment & discharged & other GP referrals were completely ignored - 3 times!

So I am very nervous of these forms & messing it up for DD. I'm guessing as with all things LA, there is a tick box, point scoring system & I need to score enough points to get her seen at all. It's bad enough they've given us 4 weeks, including the school response, when it arrived Xmas eve hmm

Can anyone help with this please. I'm guessing it's a standard form, but can post the questions in comments if needed

TIA

BlackeyedGruesome Thu 03-Jan-19 14:24:55

I wrote on the back, up the sides every where. fblush

Google the triad of impairments put down anything from there that she has.

Remember eds\ hypermobility syndrome gives a seven file increase in the likelihood of autism.

BlackeyedGruesome Thu 03-Jan-19 14:26:07

7fold

Fucking phone

grasspigeons Thu 03-Jan-19 16:41:16

I'd photocopy the form a couple of time and find someone else who knows her well (do you have a partner, or her gran?) to fill it out too and compare your answers then discuss any areas of difference, then fill out a final form reflecting both your opinions. My DH and I understood a couple of the questions very differently from each other.

You don't want to give false answers trying to score highly although I totally understand what you mean. So I would suggest really thinking about what they mean by each tick box.

RockinHippy Thu 03-Jan-19 16:47:03

Thank you. That's a big help, I was wondering if I could get away with doing that, so will now do that too.

Questions like whether DD has close friends for example, needs past history of friendship problems added. She does now have a small group of close friends, but they are all like her in the sense they are more what I suppose are the misfits. All are quite alternative in their dress sense & even views, all hate the usual gossipy way of typical teens & actively avoid that crowd, all have anxiety issues & so are very understanding of DDs problems. DDs past history of friendships has been tough on her though, & she over invests in friendships that clearly don't value her, leading to bullying & ghosting her for no obvious reason & a lot of heartbreak for her. Same with boyfriends, she misreads situations which has lead her to see boys as good friends & then she's upset when they come onto her & then drop her as a friend when she says no. Lots of similar stuff with the other questions too.

I knew hEDS was linked to autism from joining a G&T group & being surprised at the number of kids with hEDS & Autism, plus were considered gifted o that group. I learnt from reading there that there is a known link, though I didn't know it was 7 fold. There's a link the B12 deficiencies too. So lots pointing to her being on the spectrum too. It's just a case of if I can get it across in this very minimal form 😐

Thanks again smile

Marianb Tue 15-Jan-19 20:55:17

I went to the doctors today to ask for a referral to camhs. Explained we had been seen 5 years ago for extreme "fussy eating" which turned into possibly testing for asd. At the time all decided not to take it further as my daughter was social and school was no problem. They told me i might need to see them again 1 day... I was all prepared etc thought i had it planned then the Dr was pressing with questions and i couldn't get the "right" answers. She said they want a report from school teachers and solid reasons why i think she needs referred. I left really upset. Did they think i was looking for attention or something? Anyway your description of your daughter sounds exactly like mine. The friends, alternative interests, averse to the "norm" and popularity. There are so many hundreds of other little things that make me feel she has something else going on other than quirkiness. But because its not extreme behaviours i dont know how to explain it all. Let us know how the forms go smile

RockinHippy Sat 26-Jan-19 12:20:02

Just by way of update.

I filled in the form with plenty of extra notes. Once I actually sat down with the form, I thought she actually scored quite highly on it, though that's my guessing which were the right & wrong answers.

Just got the reply today.

Unfortunately as expected they've refused to assess her, with a note suggesting we join the triple P parenting course to manage difficult behaviour 🤬. There's nothing difficult about her behaviour when it comes from a place of not coping & SPD, so this is a bloody insult.

I'm with you Maria, why the hell they think we'd be chasing a diagnosis unless it was genuinely relevant I don't know. Especially as DD already has a diagnosis that means she's officially disabled & that diagnosis give a 7 fold likelihood that she also has ASD. It's daft

I'm going to ask the school for a copy of what they sent in, so I can get a feel if DD being refused assessment stems from that & take it from there . I'm going to contact her OT too, as I know they also deal with ASD kids & May have some ideas & Information on private testing. Disappointed, but not really surprised as we know how crap CAHMs are around here. sad

Marianb Sat 26-Jan-19 12:42:07

Thats awful. I was told 5 years ago very difficult to detect in girls but becomes apparent as they get older. So now shes older... if you look up Tony Atwood everything he says describes my daughter to a T. Perfect child at school. Eager to please. Impeccable behaviour. Shes not even difficult at home (but then i know how to manage her in ways her peers/ future employers may not) its really hard to explain when they dont fit in the clear cut asd box so to speak. The irony lol

Punxsutawney Sat 26-Jan-19 14:55:11

Wow that really does sound awful. My teenage Ds is being assessed for autism at the moment. He had a referral from school and before his first appointment both the school and ourselves filled in the forms.

The consultant showed me the school's forms at the appointment and I was shocked that the person that filled them in didn't even know him very well. The scores were completely different when you compared ours to theirs. The consultant said to us that it isn't unusual for that to be the case as schools don't always see everything that is going on.

I guess we were lucky his referral was accepted and he is having a full assessment. Although this is at the local child development as camhs don't deal with autism diagnosis in our area unless there are reasons for them to be involved.

MumUnderTheMoon Sat 26-Jan-19 16:12:13

Get in touch and ask them why they feel an assessment isn't necessary. The issue is that even with autistic behaviours being present it doesn't mean that a diagnosis is warranted, as it is a spectrum and everyone has exhibits certain behaviours on that spectrum. If you feel like a diagnosis will significantly improve her life then you could go private and have her assessed that way.

drspouse Sun 27-Jan-19 19:08:19

Is it true with ASD like ADHD that it has to present in more than one setting?
If so can you get someone else (extracurricular for e.g.) to give you some notes?

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