ASD referral 14 year old daughter

[Poodlemum1]

Hi my 14 yr old daughter has been having a very hard few years . She suffers from bad anxiety and has left school to be home educated because of bullying.
The last few month with no obvious reason this anxiety is at breaking point with her having thought of “if she wasn’t here” these thoughts are scaring her .
She talks to me about everything although sometimes it takes her a long time to explain what the problem is .
I have been reading and after her Councellor spoke to me to say that may be ASD was a factor a lot of boxes are being ticked .
She cannot hold on to friendships and is bullied a lot, when she does have a friend she pushes them away as she is obsessive about the friendship and almost smothers them with her feelings .
She is very fussy eating and will only eat a variat of three things , all food has to be separate on a plate and will not mix food other that all coated in tomato sauce .
Quite intelligent with school work but struggles to organise plan out things .
Constant tapping foot or bopping knee / clearing her throat .
Will not sleep at all unless I’m my bed we have tried every way during the years .
Cried uncontrollably when I found out I was pregnant / struggles with change .
When she has something in her mind like a day out or wanting to buy something she will talk about it constantly (and I mean constantly) until it’s done this could be weeks / months .
Has a huge phobia of germs and people vomiting , she will ask repeatedly am I going to be sick or can you promis I won’t be sick , even if I say I have a headache .
If anyone at sisters school is unwell she will not go next to sister and ask how she is feeling again constant obsessive Incase she has any germs.

There is loads more but we have been referred for an ASD diagnosis to see if anything needs to be addressed.

Even as a baby /young child when I look back there is signs and things she did however we have always just said she has a quirk and wouldn’t have it any other way .
She feels comfortable at home and has a good strong family relationship but with anyone else she shows shynes and cannot work out when people are being serious or joking .

Just wondering if anyone has any experience or advice with this

Hi @Poodlemum1 that sounds very like my 13 year old DD we are in the process of waiting for a CAMHS meeting. She stopped going to school at the end of primary, and we worked with a private psychologist to try to understand why. Part of it was a fear of vomiting and she had EMDR (eye movement desensitisation and reprogramming)which sounds very sci-fi - but basically helped her to move past that fear of vomiting, and get her back to school.

I'd been saying for years that I felt DD had ASD but she masks it brilliantly so even the psychologist didn't see it for a long time. To cut a long story short, we pushed for CAMHS to see us - it took a long time but they put us on the waiting list and then COVID hit so we are still on it, and not moving.

CAMHS did an online course on managing anxiety which we did and actually it was really helpful. Some techniques from that helped DD get to the point she's at now where she eats normally with us, but won't really eat in public; she's at school (when it's open) - with some anxiety about getting there each morning; we've moved from sleeping with her to checking her windows etc in a specific routine and then leaving her to go to sleep on her own. Things that maybe seem obvious to people with children who don't face these challenges, but they are huge successes for us!

There is a facebook group you may find useful - Colouring outside the Lines, for parents of girls with autism

Thank you I’ll have a look at the group .

I would never have thought ASD as she hides feelings / emotions very well.
You would never guess if didn’t know her well.

I’m now hoping we do get some kind of diagnosis as this would explain things for us.
I’m worried in case they say anxiety but to me this can’t just be anxiety ?

I have two other children and feel so guilty that I never saw signs earlier 😢

Don't feel guilty at all, if even trained psychologists can't spot it then we can't blame ourselves for not seeing it. Plus I should imagine you are her 'safe space' and you've adapted to support her so well that it's hard to understand how different she might be in public. Girls can mask ASD signs so completely that it's incredible (and exhausting for them).

CAMHS do tell me that it's anxiety, and my response is that her ASD is coming out as something they recognise as anxiety but that's a symptom not the underlying cause. To be fair to them the anxiety reducing techniques do work - but you need to find out which ones suit. My daughter won't have anything to do with mindfullness or calm breathing etc. but she did like the more pragmatic options such as trying to come up with solutions to specific situations etc.

Hopefully this image will load - I try to keep it in mind when I see how DD is with other people

@Chrysanthemum5 thank you

It is so hard when I’m now noticing all the ways I adapt to suit her needs .

We even used to tell her off if she did something wrong and the ways she spoke back to us was really cheeky ( she is normally very polite and well behaved) but I’m thinking now maybe she can’t understand our emotions and we used to say she took things to heart a lot when we were joking but again I think she doesn’t understand.

She puts her hands over her ears and rocks shouting Mam Mam if she hears very loud noises or gets scared .
She did this last week when I was feeding her baby brother weaning him and he gagged a bit . I explained this is normal but she was rocking hands over ears and shouting Mam Mam what’s wrong with him , help him .

She also worries if she hears a plane or helicopter fly over head , she thinks it will crash on top of her or our house .

She doesn't sound too dissimilar to my ds (16) who has ASD.

You are doing the right thing supporting to through an assessment. To help her they need to know the route cause of her anxiety.

Also if you don't yet claim dla then I'd make an application. You are doing a lot for her and the money will help you financially with this.

@itsgettingwierd
Hi , I didn’t think I can claim anything well not without a diagnosis .

You hit the nail on the head when you say they need to know the root cause of her anxiety .

It’s nice to hear we’re not alone , I’d never heard of this before I assumed all ASD was severe and learning difficulties.

Please be very careful with CAMS. I have a 14 year old daughter who went for an assessment. After their interview with her, they basically ripped apart the way she talked and her character right in front of her. I've noticed since (unsurprisingly) that she's even more nervous and quiet in front of adults as she thinks now every time she talks she comes across as weird.

[quote Poodlemum1]@itsgettingwierd
Hi , I didn’t think I can claim anything well not without a diagnosis .

You hit the nail on the head when you say they need to know the root cause of her anxiety .

It’s nice to hear we’re not alone , I’d never heard of this before I assumed all ASD was severe and learning difficulties.[/quote]
You absolutely can because she's recognised as having anxiety and you do so much more for her than an average 14yo would need. That's the benchmark.

As you see specialists you add these on. Also if you aren't working (I assume you can't with supporting her?) you can then claim carers.

I would honestly look into it. It'll help pay for things she would benefit from

@itsgettingwierd.
Thanks I’ll have a look into that .

@efasdfasdfsf
Oh that sound bad !
We were sent to CHAMS last year but with lockdown and no school she had been a bit calmer so nothing much happened.
We have been referred again as she has rocketed with her emotions and feelings

@itsgettingwierd I didn't know you could apply for DLA without the diagnosis - thanks, I'll look into that

Don't feel bad for not recognising the possibility of ASD earlier; girls mask really well (learn how to behave by copying others, hide their difficulties) plus, unless you know or work with people who have ASD there's absolutely no reason why you would be familiar with autistic traits.

Some of the voluntary work that I did when I was young involved working with autistic children and young adults, I've taught autistic children, watched tv programmes and read books about autism but still got to my late 40s before I suspected that I might be autistic myself! (finally got a diagnosis in my early 50s).

If your dd does get a diagnosis, it will help both you and her to better understand her difficulties and should also enable support to be put in place for her at school.

@cariadlet yes it wasn’t until I read about anxiety in teens then came across ASD information.

Like I said before I hope they can see past how she masks a lot.

When I told my friend who works with adults with learning difficulties she said “no I would never have thought that “ but when I told her the things that are happening she explained that all of it does sound ASD like.

contact.org.uk/help-for-families/information-advice-services/benefits-financial-help/benefits-and-tax-credits/disability-living-allowance/

For those who didn't know about claiming before formal diagnosis you may find this a useful read.

Good luck

@itsgettingwierd thank you very much that looks very helpful .
I’m going to give them a call and request the forms