DD7 anxiety - ASD?

[purplerain44]

hi there, my DD7 has been under CAMHS for a year and half now. Originally referred because she stopped eating (fear of germs/ allergies) and cried everyday at school. We've been seeing the therapist every few months (without my daughter) and getting advice on how to help her. I have suggested ASD (She is rigid in her thinking/ emotional meltdowns/ social misunderstandings/ one intense friendship/ sensory issues/ obsessional/ perfectionist/ intense fears and has struggled through every transition. Cried everyday going in, and at school. When she was little, she used to line up her toys and make patterns with them, rather than play - she doesn't play with anything anymore). Otherwise, on the surface, actually appears neurotypical - sociable, friendly, bright, good reader, eye-contact when she knows you etc). The therapist said she had referred her for ASD assessment, so we've been waiting and in the meantime, she's been better in terms of her eating, but still highly sensitive and emotional etc.

Fast forward 18 months and now DD7 is the most anxious I've seen her. She's terrified she's going to die and she's stopped eating because she feels sick all the time, and literally can't be in a room without me. I have to sleep with her, and she doesn't get to sleep until 11.30/ midnight. My husband is going through chemo so this doesn't help either. I emailed our usual therapist and she has since seen my DD twice on video chat, which my DD had constantly requested as she was so scared of how she was feeling. The second time we saw her, my DD was pretty "normal" talking happily about her cat and her brother. She had eaten a bit more and seemed far less anxious. The therapist afterwards mentioned that she was surprised and was wondering about the idea that she would be put through an assessment. And now, I'm doubting myself with everything.

Should I not even be pushing for this assessment? Is it even going to happen? I wondered if anyone had experience of this and if you had any advice of what I should be doing. Thank you.

Hello

I'm not going to go in to detail today (purely because I feel quite mentally drained with it all at the minute) but I am in a VERY similar situation with my DD, nearly 11.

BUT... You absolutely should go through with the assessment for your daughter!!! I TOTALLY understand (and live) with the fact that 1hour to the next can be different 'anxiety wise'.

My daughter is 2/3 of the way through the assessment. Parental interview, done. School interview (not observation because of Covid,) done. Just waiting for ADOS.

We are preparing for a short break (probably why I feel drained as my daughter's anxiety rises and it takes a lot to prepare her) but I shall be in touch and give you more context soon.

X

What you describe is so similar to some of my DS traits (now 13 but started really struggling with emotions and everything - life - from about age 6)...we'd go through weeks when everything seemed better only to crash back down with struggles and difficulties again later on. Trust your instincts, you know your child best.

This description of anxiety is very similar to our experience but at a younger age for us and prompted by a very tough school episode for my dd, who already had a diagnosis.

It did get better but I see signs of growing anxiety now, as I do with my nt kids. It's a very tough time in general, but you're really going through it. Everything I've heard from adult autistics suggests diagnosis is really helpful in terms of helping understand yourself, forgiving yourself for what you see are your different responses and helping to value who you really are, so I would defs continue.

She sounds autistic to me, btw, so if I were you i would work on that basis. Sounds like you're doing that already -by preparing her for changes like holidays. I do funny (I like to think so) social stories with lots of pictures before any holiday, print them out and take them - and all the kids enjoy looking at it repeatedly beforehand. I have a HUGE planning blackboard so she can see what's happening every day. (Bit empty now though! )

One unexpectedly helpful thing with anxiety is sensory input. You might already be on to this so apologies if so. Swings are often calming. We have a gorilla gym one. Bouncing a ball too. You holding her shoulders while she tries to push up on a trampoline (trampolines alone can be very disregulating). Squeezing her! We live in an LA which provides sensory integration therapy for young autistic kids and it was amazing for her anxiety. But I've found good occupational therapists really hard to come by. If you're in London I can recommend Orit Roditti.

Thank you very much for your replies and the advice. I really appreciate it.

I think that yes, she does need the assessment @pandyandy1 - it was the comment of surprise from the therapist that she would even need an assessment, which has thrown me. I always knew that she was skeptical about my DD going through an assessment and has always said anxiety doesn't automatically mean ASD, which I know. But to me, it's just one piece of the puzzle.

She repeatedly brushes over my DD's sensory issues (which I'm realising affect her more than we realise (eg. being super hot makes her itchy and she just can't stand it). And thank you for the advice on this @Legoroses - we don't have room for a trampoline, but I have noticed that swings and jumping are where she seems really calm and happy. It's always very subtle though.

I am even doubting that she has even been referred. We had a long 1.5 hour questionnaire about a year ago, and something has been filled in by the school (although they are equally sceptical of my DD being on the spectrum so the therapist said it wasn't good enough). I have asked a few times where she is on the waiting list and they keep on avoiding the question. I am 100% keen to go through with the assessment but feel I've hit a brick wall. Being aware of who she is is vitally important I agree @Legoroses. She even says things like "Am I in a nightmare" and to me, that tells me she's living in a world that she doesn't feel right in. My heart goes out to her when she says things like this - what 7 year old should wonder if they are in a nightmare or real life? Also, what if she eventually has the assessment and presents in the chatty "normal" way she did with the therapist? As a girl, I feel it's likely she may not even get a diagnosis. She's very bright, can be articulate, and sociable. What happens then?

Sorry this is so long!! Thank you.

It may be worth looking into specialists in anxiety as presents with ASD - if you can afford to go private it could save years of going round in circles with local paeds/CAMHS services who are more used to the 'typical' ASD presentations...I have no direct experience with them but have heard Lorna Wing NAS assessment service recommended. Anxiety can hugely cover up ASD traits - it was only when DS meds started to lower the anxiety that we saw how much he did for a more typical ASD profile. Before then his anxiety and OCD traits stood out and were more impactful than anything else.

Purplerain44, we have had exactly the same as you. I paid £50 a week for a private therapist, to be told after 8 sessions that she thought DD couldn't understand her feelings because of her age; felt 'overwhelmed' when she didn't understand what she was feeling, or why; and had perhaps suffered an element of trauma (as simple as falling over in public and people laughing at her or something) which now causes that 'overwhelmed' feeling on leaving the house.
None of the above rung true for me and I too felt there were loads of other elements the therapist was excluding ie tip toe walking, flapping, obsession over time etc and calling excruciating anxiety (that affects our whole family) 'overwhelmed' nearly broke me.

Now, irrelevant of her thoughts; irrelevant of the fact my DD masks at school; irrelevant of whether she gets a diagnosis or not, I just got 2 a point of acceptance that my DD's development isn't NT and use a range of ASD strategies to support her and aid our family life.

Like somebody said above, you know your daughter best.

*My younger son, 7, has ASD (diagnosed at 4.) He is the polar opposite of DD. I used to think his 'it's all about me' way of thinking was hard but anxiety is horrendous and I just wish I could take it away from her.

Thank you @Annilk. I looked at the Lorna Wing centre and it is very expensive, but it does look like exactly the right kind of place for my DD. And that's very interesting that your DS's lowered anxiety allowed some more typical traits to show through. Can I ask what those were? And is that because the anxiety was a coping mechanism? I'm glad his anxiety was managed though.

And @pandyandy1, sorry you had these difficulties too. Will you still pursue a diagnosis? I'm interested in your DD's obsession over time - because my DD has literally no concept of time at all!

Thank you for your replies.

I'm got a 13 year old DS about to go through ASD assessment - we waited two years on a list with just one meeting in old area then moved and its taken 2 years before we've got assessment and heard nothing before then. So you could well just be on the list though I've had trouble myself with NHS just losing me from lists so always best to check. School had more luck checking than us.

In our case DS was supposed to have ADOS but was too anxious to do it so even though they think he probably is ASD they will have to kick him out if doesn't do it next time, which is likely. Having said that I've always just used and school shifted to ASD methods as he got older so diagnosis wouldn't change anything. School just hope it will bring funding but in reality its unlikely. I wish I didn't need to put him through it.

In your case I wonder if the extra anxiety is connected with your husband's chemo. I wonder if she is scared her Dad is going to die and that's why she's clinging to you? I wonder if he isn't terminal and likely to survive its worth explaining that to her if you've not done already. My DS does find our pets a huge help so good you have a cat, we have now got a cat, indoor rabbit and 3 silkie chickens and he worships them.

Have you got help with her eating? My DS went through a very restricted eating phase and we had to be referred to a specialist, they advised us to get anything into him to get his BMI up from 4th percentile even if not healthy food / repetitive / small snacks rather than eating. That wasn't CAHMS, I think it was as he had evidence of allergies too we were referred elsewhere as a medical physical issue.

Hope she can improve, must be so hard and worrying for you at the moment with your husband going through chemo and such an anxious daughter. I hope you have some support for you too.

Currently we are just waiting on an ADOS, the rest is done but they can't do the ADOS because of Covid.

If DD doesn't meet criteria for diagnosis, well... we shall just think about that if/when it comes to that.

Time - my DD gets up and wants to know what we are doing and when. Even after writing it down on her whiteboard, she will keep talking about it ie, "So we are going to nanna's at 1.00? So we will have dinner first, at 12.00? And then we'll set off at 12.30?" She will repeat these questions throughout the morning (for reassurance.)
From 11.00 onwards she will slowly start pacing, flapping and wringing her hands and will repeatedly prompt me to start making dinner, whilst she checks and checks she has everything she needs.
If anything gets in the way of the progress towards the outing, ie a neighbour popping by and the schedule is thrown off in any way, DD will pace, flap and wring hands alot more as well as become teary.

My son, again, is the opposite, I'm constantly chasing him round to dress him and brush his teeth 5 minutes before we leave because he won't get off his xbox.
X

We've just been offered an online ADOS which DS is supposed to do by himself with no help from us. He can't do video calls so bit of a nightmare.

When he started taking the medicine the intensity of the anxiety was so greatly lowered that it was easier to see the worries and obsessively rigid thinking were not always related to 'typical' anxiety issues - and because he was calmer and less intense his behaviours just became more repetitive, more obviously ASD. If that makes sense, I might not be explaining it very well.
This was the biggest single thing in blocking our path to help - because it was 'just anxiety' for so long, even though I always felt it was more than that. ...when you say "rigid in her thinking/ emotional meltdowns/ social misunderstandings/ one intense friendship/ sensory issues/ obsessional/ perfectionist/ intense fears and has struggled through every transition" it just makes me think of us at that stage...that's exactly how I would have described my son. He was diagnosed with GAD and ASD eventually, rather than GAD on its own.
Have to dash out now but can try and explain more later if it's helpful.

@KoalasandRabbit yes, we have explained that her dad can get better, but you're absolutely right that it must be terrifying to see him poorly with the treatment and it's stressful enough during a normal time but during a pandemic, it feeds into all her fears.

@pandyandy1 - my DD is like your DS - she is literally in the screen all the time, and I cannot get her out of it - however long I prepare her for it. It must be draining to have both DC with such differing perspectives of time. Your poor DD, she does sound very anxious - it's just so draining I know - sometimes I feel like some strange being has taken over my DD the amount of time she repeats her fear of being sick/ dying without me being able to rationalise it for her.

And @Annilk, that does make sense and is interesting to hear. Thanks for replying.

Hope it all goes okay. It's so hard. Sending

DS at that age was a Mummy magnet though more cuddle obsession than anxiety and I eventually got replaced by a giant toy panda / penguin and koala each about 4 foot high. May not work if anxiety driven but if its cuddle driven it can work though house does then get overrun with giant soft toys.

I'm just updating this thread purplerain44 to say that my DD did receive a diagnosis.

I know that her levels of anxiety aren't going to get instantly better but I am being positive that, as she better understands herself, and school receive more specialist help... things will slowly improve.🤞

I know it is so hard, so sending positive vibes your way

Hi @pandyandy1, that's really great news, I'm really pleased that your DD has a diagnosis. Well done to you for this. Your DD will thrive in the knowledge.

My DD is currently doing much better having seen the therapist at CAHMS online for the last 2 months. her anxiety levels have dropped, which means she is eating again and has OCD-like symptoms far less. I think being back at school and routine has been really helpful.

We have been told her assessment will be in 6 months. I am so nervous she won't get a diagnosis - not because I want her to be on the spectrum if she's not, but in case they miss something? The therapist she is seeing said she is 50-50 as to whether she is autistic as she seems so "relatable". My DD is very sociable and when not anxious, appears entirely "normal". Although the therapist agrees that underneath she isn't as confident as she appears. She manages one-on-one interaction well when it's with someone she likes, but when any talk of emotions or feelings have come up, she freezes and pretends to cry, which the therapist sees as avoidance.

Anyway, I am very pleased that your DD will get the right support now.
Thanks for the update!

Really great news that your daughter's anxiety has lessened of late!!!

My daughter only had the last part of the assessment, the ADOS, on Friday. I didn't sleep all weekend; convinced they would say no, purely anxiety and we would be back to the beginning. If I'm honest, I was trying to but had little faith the professionals would see past the male profile.
We found out Tuesday that she met the criteria and I felt bad for not believing how well trained the wonderful team are.

Please keep some faith and please keep us updated