Talking about the nature of anxieties? DD10 suspected ASD/ADHD

[OutOfInspo]

My DD is 10 and waiting for assessment. She has strong anxieties and aversions- fears of being alone in any room day or night- even the shower, toilet. Fears of sleeping alone in her bed. Would prefer not to leave the house except for very few specific purposes. Hates wearing clothes and shoes. Various sensory things like cold, wet or labels in clothes. Various strong food aversions. Never had a real friend. Gradually eating less and less in range and quantity.

I really want to help her in a practical way if I can with her anxieties and issues but I struggle to understand what we can do differently that might make a difference for her. Every time if I ask her in a relaxed way what it is about these things that worries her, so I can try to change things around that thing if I can, she just says she doesn’t know why.

Has anyone else had any success with eliciting specifics with their child or am I just trying to apply an inappropriate solution here? I’m so confused and just want to make things easier and more relaxed and fun for her at home and school. I’m very worried about how secondary school transition will go.

The the anxiety related to DD’s sensory needs has she had an OT assessment? For the clothing specifically have you looked at more sensory friendly clothing e.g. seamless or seamfree socks. The out of sync child and Too loud, too bright, too fast, too tight books are good for sensory difficulties.

For the difficulties eating look at ARFID. I would request a referral to a specialist for this. Gillian Harris and Rachel Bryant-Waugh are the experts on ARFID, they have both written books that would be helpful to read.

If DD has ASD &/or ADHD at least some of the anxiety is likely to be due to/exacerbated by unmet needs and if those needs were met the anxiety would lessen. What support is the school providing? Do they have anyone able to deliver emotional literacy interventions or something like drawing and talking.

Thanks JustKeepBuilding
no OT assessment, but no diagnosis yet. I will ask the GP about it.

On clothing- yes strict uniform of tshirt and leggings at home. School uniform is what it is though and that is a daily struggle. Thank you for the book recommendations.

School are doing their best I think- they take her out of class once a week for one to one with drawing and talking about anxieties and feelings.

I will look into ARFID. I didn’t know about that.

The school must make reasonable adjustments. If DD can’t wear the uniform they must allow adjustments e.g. black leggings instead of trousers and T-shirt in the colour of the polo shirt.

In some areas you can self refer to OT, you don’t need a diagnosis. Sensory OT isn’t commissioned in all areas but it’s worth a referral anyway.

The school should really be providing more support. If you think it’s needed you can apply for an EHCNA. If you do and the LA agree to assess a sensory OT assessment can be included even if your area doesn’t commission support on the NHS.

Yes school should make adjustments on uniform. My DD can't cope with stiff shirts and tight waistbands but she doesn't mind the summer dress, so she wears that over leggings and a long-sleeve t-shirt. It's worth exploring with DD what she might comfortably wear. I know at that age though they can start to get sensitive about looking different/standing out.

Does she suspect autism in herself too? And if so, does she understand what that means? It might be worth getting her some resources to start to understand it (e.g. books by Abigail Balfe, Camilla Pang, Siena Castellon - there are others on the Lizzie Huxley-Jones website here lizziehuxleyjones.com/#autbooks). She might struggle to identify the words to go with the sensory and social feedback she's getting at school, and reading more about others' experiences can help.

Wow thank you this is very helpful with regards to uniform. The school requires collared shirt, a school skirt and a v neck jumper. I had no idea that I could ask for adjustments on it.

I guess because she doesn’t have a diagnosis I have hung back a bit but I will start to try to see if there is anything the school could compromise on. It’s old fashioned and does not allow trousers for girls currently although considering it so I have already been pushing for that on an accessibility angle. Plus the obvious sexism..

Thank you very much for the reading suggestions too. I think she does know a bit about autism and we have talked about the suspected autism and how some of her teachers and me think she might have something that’s connected with how she feels about school and a few other things so we have asked that she gets an assessment for it.

Her Dad and I both have older family members undiagnosed but who have traits strongly reminiscent of autism spectrum so we have said to her it wouldn’t surprise us if her assessment does suggest that she might be somewhere on the spectrum. There’s suspected ADHD in the mix as well and we both have adult friends she likes who have that diagnosis and talk openly about it, so that’s been really easy to talk about which is great.

You don’t need a diagnosis to be covered by the Equality Act. The school must make their ‘best endeavours’ to meet DD’s SEN diagnosis or not.

Thank you Just Keep Building that makes sense. I guess I am conscious that without anything official the school probably don’t have any extra funds for doing things differently for my DD but you’re right. It’s not the fault of kids or schools that the system of assessment is so slow and in the meantime there’s going to be a lot of unassessed kids’ school years passing by.

She needs to feel safe before she can start building independence so I would allow her exactly what she needs as much as you can. Stay with her as much as possible, consider letting her sleep in your room - feeling safe will considerably reduce her anxiety. Fear often isn't rational - think of phobias, you can't always say why something makes you anxious, you just know you don't like it. I would also accept that she has to go to school every day and that is a lot for her - so make after school a very calm chilled time at home - have a routine. Forget after school activities for now, let her decompress at home. Also at the weekend keep it as calm as possible and have a routine as much as you can, these things will help her anxiety. Give her a warning with lots of time to adjust if the routine is going to be thrown off for any reason or she has to do anything she doesn't normally do.

She should be allowed to wear clothes she can cope with at school, I know there are students at ds's school who are allowed due to ASD.

What does she love? Does she have anything she's interested in or obsessed with. I'd definitely let her delve deeply into those things if she does. Would she enjoy a pet? They can be great for anxiety but it really depends on her.

You don’t need anything official. Support in schools is based on needs, not diagnosis. Even if you did have something official it doesn’t automatically result in additional funding.

If the school need more funding to meet DD’s needs they can apply for high needs top up funding. You or the school could also apply for an EHCNA.

Thank you so much for your replies. I really appreciate it.
She has a cat that she is very close to. She loves Harry Potter, music, tv shows and likes researching tropical animals like snakes and cute fluffy things in trees. I was trying to get her into some after school clubs to see if it might help her find a friend but I do think she’s tired out a lot of the time after school, so I might pause on that. Thank you again.

Just revisiting thread to say that secondary transition has been extremely anxiety making for DD. No help from GP while we are on waiting lists, new secondary is now offering some limited support around sensory needs and anxiety but as they lack resources have been made clear these are temporary. Nothing in place for the learning needs apart from not sanctioning her for not doing her homework. Secondary school recommending we apply for EHCP.

I don’t know where to find out what adaptations would help DD or what I can ask school to provide, or what they are obligated to provide for pupils with SEN.

Just taking Lunchtime and eating as an example. Before school in the mornings I need to prompt DD and ensure every aspect of dressing and personal care is done, or they are not done. Due to multiple sensory aversions to the secondary school canteen DD insists on a specific packed lunch made in a way she approves. She had school dinners at primary school though only really ate plain carbs.

I can’t both supervise DD getting ready and be supervised by her to make her packed lunch because it takes too long and is extremely stressful for both of us.

I have asked school several times if they can provide an adult to help her get a school lunch. Leaving lessons early to use canteen and pick up school much when quieter isn’t enough to help DD. Providing a quiet lunchtime club is really great but DD won’t eat lunch in them especially not when it requires her carrying a hot lunch on a tray across the school site and up and down stairs. She is poor with navigating and says she doesn’t really know her way to find and get to the rooms the clubs are held in.

She’s just going off and eating her packed lunch in the playground for now but the weather isn’t going to allow that much longer.

So do I have any rights to insist that school provides sufficient adult help and an accessible suitable quiet place to eat, so that she can access a school lunch?

Leaving the impact on learning aside, hangry DD has much worse meltdowns after school because she has barely eaten all day.

Other issue is that DD doesn’t know when she’s hungry so an adult is really needed to remind her to eat. She’ll get distracted or stressed by something in the playground and not eat. Then the bell goes and it’s into lessons. I could make all the same points about her avoiding using the school toilets all day. She’s just nowhere near as independent as her NT classmates.

Use IPSEA’s model letter to request an EHCNA.

Schools must make their best endeavours to meet a pupil’s needs, and they must make reasonable adjustments.

Would DD use the disabled toilet(s)? Can you make the packed lunch the night before? Would DD eat a packed lunch in the quiet lunch club? If not, can DD communicate why not? Do other pupils go to the quiet lunch club - could you ask the school to buddy DD up with someone until she knows the school better? Does she have a map of the school? 1:1 support is highly unlikely without an EHCP.

What adaptations would help depends on DD’s needs. For example, allowing the use of noise cancelling headphones, time out card, moving lessons 5 mins early, use of laptop and assistive technology (although without an EHCP the school may not have the funds to provide extensive assistive tech), pre-teaching (although without an EHCP the school may not have the resources to do this regularly/long term), advance notice of content of lessons and changes of routine, providing notes in advance, key worker/mentor, sensory circuits (however without an EHCP this may also be limited). With an EHCP, the possibilities are greater e.g. OT, SALT, MH therapies, 1:1.

For an EHCP, you don’t need to know what provision DD requires now. If the LA agrees to assess the needs assessment will include assessments that look at DD’s needs and the provision she requires.

Thank you so much JustkeepBuilding that is really helpful. I haven’t heard of lots of these so I will look into them. If someone could pre-teach DD she would fly. She is below normal ability in processing time and memory but with very strong verbal ability so I worry how much actually can really be learnt in the standard class time.