Did, 13, new diagnosis of anxiety, ASD, how to help?

[Worriedmummmm]

My dd has just been diagnosed with anxiety. She is awaiting assessment for ASD but was in with a psychiatrist as part of the anxiety who strongly agrees her presentation is autistic. She also has a separate specialist who observed a meltdown and sent the referral off straight away. We are already in a different part of CAHMS so under a different pathway.

I feel a bit lost at how to help her. Looking back, she had a lot of traits as a young child, however I share these traits so didn’t recognise them as different or unusual. These were quirks and didn’t impact really. She was clearly different from other girls at primary, but in a wonderful way. I put this down to her being older in the year, and her unusual levels of empathy and emotional maturity.

In the last 6 months it has become crashingly obvious she is likely ASD and symptoms which we were looking for a physical cause are probably the ASD. Similarly she hadn’t mentioned how anxious she was; we have had other things going on with her so this has sort of suddenly reared its head, but with hindsight, should have been more obvious.

Her ASD assessment should be Jan/Feb and she has ADHD scheduled for Dec. She has some sessions with an OT around sensory issues in Nov so we are being really well supported. I am however feeling a bit lost at how best that I can support her, and also worrying at what life will look like for her long term. I want to be able to upskill her so that she can have a ‘full’ life - ie have a personally rewarding job, socialise if she wishes (ie rather than being too afraid with all that comes with), have a family if she wishes. She would like to work in the medical field with children; either doctor or nurse. I feel like she is slipping into isolation at present and this makes me fear for the future. She finds socialising too draining. Doesn’t want to see her friends for her birthday in a couple of months - the last 5 years have always been birthday sleepovers but she can’t handle a sleepover now; too tiring.

She is bright, has a couple of friends, gets on extremely well with adults, is polite and does some extracurricular clubs. She is incredibly empathetic. She likes surprises (not to be confused with change) and loves theme parks; she went regularly from 3, and I perceived her as able to engage with all activities at a ‘normal level,’ allowing for her being ‘sensitive.’ Now she is having shutdowns from sensory overload, can’t cope with noise at school or home (despite ear loops), is pulling at her skin and hair a lot, and either has a panic attack, or feels herself going towards it a few times a week. Cannot cope with change, needs to know final outcomes, is exhausted by almost everything, can’t do PE, and has lost all muscle tone as she is so sedentary. She likes to go for walks but unable to as she is too tired. She wants to go to a theme park; last time we did she completely shut down so that she had to be carried out of the park all the way to the car, with her too weak to talk. So it’s not depression as she wants to do these things, it’s just this huge barrier of access.

Any advice, hints or tips would be so helpful. She wants to go to Camden market for her birthday. We can drive her, but I just have no idea how she’ll cope once we’re there. At the same time i don’t want to quell her adventurous side, and that part of her that wants to try new things. She has complete faith in her dad and I so I want her to continue to try new things with us as her safety net. But I am scared it will totally overload her.

I had never heard of ASD shutdown until a few weeks ago. She doesn’t tantrum when melting down, she starts catastrophising and pulling at herself, rocking and finding her clothes unbearable (no stripping yet) as well as touch. Any reading I can be pointed towards?

I want to do whatever we can to support her, especially to try and make school easier as academia is important to her. I would love advice on how we might be able to access family activities which she might find enjoyable. We used to play noisy board games, family movies, family meals. We used to laugh a lot together. All of that is difficult for her now. One of her siblings has a ASD presentation, but sensory seeking with no sense of an inside voice so this is an added dynamic of difficulty.

thank you for reading

I really feel for you. The start of puberty along with High School is really, really difficult for a lot of Girls with ASD.

What steps have the school put in to help her?

My DD found a toilet pass helpful as she didn't have to ask to go. She also had access to the disabled toilets which were much quieter than the main toilet blocks.

Can she leave lessons and go to a room for support and do her work there?

Have any of the professionals suggested Sertraline? If not, I'd ask to try that.

How's her sleep? My DD has always struggled and being prescribed Setraline along with Melatonin has been transformative.

Does she take a good vitamin and mineral supplement. I think there's evidence on lack of Vitamin D and the B vitamins affecting mood and if she's menstruating it's possible that a lack of iron could be adding to her exhaustion.

@PolaroidPrincess thank you. She was prescribed sertraline last week. I am trying not to place too much hope in it but it could be transformative.

She takes multivitamins every day and has fairly regular blood tests. We watch her food and water intake so are content she is getting what she needs.

School are reactive. So far she is excluded from games. They are dead against her leaving class; if she has to she does and she has a support worker she can go to, but their perspective is that she needs to be in class as far as possible. Her specialist has also advised against leaving class on the basis that once she starts, she’ll never stop. So she leaves when she has a panic attack, or close to it.

I understand the wanting to keep her in class thing but what are they doing to actually make sure she's able to do that without getting to a point where she's flat out refusing to go?

Has she got an ECHP?

What are they doing? Nothing! No EHCP - we are very new to this journey

You can apply for an ECHP yourself, I would really recommend doing this.

@endlesslight is very good and know the process thoroughly.

Sertraline can help but it can also make things worse in the short term. Is DD receiving any therapy alongside medication?

Is the OT only looking at sensory issues or are they supporting other OT needs such as the fatigue, low muscle tone, emotional regulation and social interaction? And have you had a home OT assessment looking at adaptations and equipment that can help?

Has DD had a physio and SALT assessment?

What is DD’s weight like?

Has DD been reviewed by a paed - thinking about her physical difficulties?

If DD wants to visit a theme park, would she use a wheelchair? And you could look at a ride access pass (or whatever the theme park calls their pass for those unable to queue). If DD would use a wheelchair, you could use one for Camden market, too.

Would DD find socialising online helpful? Some areas have a youth group for autistic/suspected autistic teens or teens with SEN. If you do and DD would attend, she may find that less pressured.

If DD isn’t finding Loops helpful, could you afford to try Bose noise cancelling headphones?

Some people find The Out of Sync Child helpful for sensory differences.

The school needs to provide more support. Forcing DD to attend and remain in classes without support/adjustments could be traumatic and may make things worse.

Thank both, lots too think about @EndlessLight

Counselling - she is having some light counselling at school and on a waiting list for something more formal on the NHS.

The OT is literally just sensory issues. It’s a quick fix while we wait for the Asd assessment I think. I missed out that she is anorexia. She is now at normal weight and but this has clouded the issue as quite a few symptoms were put down to starvation syndrome. It’s only now that her weight is fine that we are looking beyond. No physio and her speech is fine; she is incredibly articulate.

Yes to paeds; this was before the anorexia diagnosis and were hugely unhelpful. She was referred to tests but at such low priority they haven’t happened some 9 months later. They missed the low weight despite me raising concern that she was losing a lot of weight. They were essentially unbothered about her.

Wheelchair - we could try. We have a travel one. I suppose I’m reluctant as I’m worried if she gets in she won’t get out again. I think I need to really have a think about my understanding of her issues. I sort of do one minute then don’t the next. It’s such a good idea to put it in the car for Camden though; that way we’ll be prepared if she has a shutdown. She had another today after going to a family think on Friday night.

Online socialisation is a good idea. I might contact the school nurses and ask for advice. She doesn’t know anyone at all who is diagnosed ASD so it must be frightening for her. She only really has me to talk to about it.

Bose - the loops are an issue as her internal sound is magnified; she has tinnitus and the sound of her breathing etc is really loud. She wouldn’t be allowed headphones in school (she wears her loops in lessons) but might be an idea for out of school. I saw some ear defenders today which she has borrowed when we were at the science museum. They are a very obvious ‘look’ however so I need to ask her first.

And finally, school. She is at an academic private school, on a large, funded scholarship. She is currently in breach of the attendance policy due to her appointments and I am nervous that they will want her out if we push too hard. This is a school that she chose and loves, and actually is a much better environment than the local state that we wanted her to go to. I absolutely don’t want to make anything traumatic or worse for her though.

Request a referral to physio. In some areas, you can self refer. Also, look into OT for other aspects of DD’s needs.

DD may be able to physically speak well. However, the scope of SALT is far wider than that. If you suspect DD has ASD, she would benefit from SALT input. SALT covers things like social communication and interaction. It can also help with emotional regulation.

Chase paeds. For the tests and a review.

Is DD still under the ED team?

The school must make reasonable adjustments. That includes using headphones if needed.

I understand your concerns about a wheelchair, but don’t underestimate how exhausting physically and psychologically longer trips out to busier places can be. If the alternative is DD being overwhelmed and potentially reducing the frequency she goes out or stopping going to certain places altogether, for me, it is worth it. Especially whilst DD is recovering from burnout and shutdown. Has anyone covered pacing with you and DD? Have you read about spoon theory?

My daughter now aged 14 was diagnosed with ASD and anxiety last year. I can totally relate to your post, it's hard to know how to support them.
I've gone a total low demand, no pressure at home on everything, which seems to help her anxiety. I've had to learn to parenting her as a total individual and ignore completely all social norms or expectations of parentimg.
It's gets easier but we still have ups and downs.
Sending hugs