11 year old DD poss ASD

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Hello

Im looking for some advice or help or just someone maybe who is in or has been in a similar situation.

I have an amazing DD who is 11, 12 in June.
She has started secondary school this academic year and initially it was really tough for her. She came from a normal primary school and had an amazing group of close friends who she saw outside of school. She was in a friendship group that was really healthy, all different to each other but supportive of those differences ie one was confident one was super bright one was sporty etc but they had so much fun together.

My DD has always been a quiet child, lacking in self belief and confidence but with support has really come into her own.

She has struggled at secondary school but has found a good group of friends who albeit are all young and just trying to get through navigating a new school.

My DD is a private person and has always taken time to warm up to new people and as she grows is becoming increasingly concerned about social situations. She doesnt really share her own views or likes dislikes for fear of offending or being ‘wrong’ which i think is all pretty normal.

She has been diagnosed with tension headaches and has been receiving private counselling since October last year. Her mood is very low at times, she has started CBT therapy at school has an exit pass and access to the nurture area in school whenever she needs it.

She often will not want to go to school, she doesn’t like change in teachers, she doesn’t like being off timetable, she struggles with fun days at school as she will be off timetable. She worries about every aspect of school.

She needs to know what is expected of her and what to expect in the very lesson. She talks through her day ahead with me every evening planning what to do or what to say. Every night we go over the day that has just taken place, unless it was a particularly difficult day then she shuts down and doesn’t want to talk.

She has a very supportive school but nothing seems to be helping. She has steadily started to access the nurture area at school more frequently and for example made a plan last night to be in there for some lessons today as she knew they would be doing games which she finds difficult to navigate.

She has this week been accepted by CAMHS as she has stated on multiple occasions she doesn’t want this life, she wants to reduce her days in school, she finds it all so overwhelming and social time in school is exhausting for her.

CAMHs think an ASD assessment would be helpful at this stage, I see lots of links to ASD but I also see some aspects of her struggles as normal pre teen struggles.

She was texting me and my husband from school yesterday saying please help I can’t keep doing this, I contacted school and said she appeared to be settled. I’ve explained to school although they are supportive and she appears in the moment to be coping once she is home she’s exhausted, emotionally, mentally and concerns herself with what’s to come, the teacher said we are doing this next week, what does it mean, what will they expect from me etc.

I know the waiting list for CAMHs is so long and I want to ask if there is anything anyone thinks we could implement now to support her to manage day to day life better.

Counselling has made no difference if anything things are slightly worse as I see her slowly beginning to communicate less as I fear I am not supporting in the right way. I try to hear her and empathise rather than always rush to fix things but it’s so hard.

She has chest pains, loose stools, tummy ache and headache constantly and is unwilling to access fun things at the weekend instead preferring to stay at home.

I can’t capture everything in this post cos there is so much any questions please ask, any advice please share and if you’ve been where I am what helped, do things get better?

Very similar profile with my dd.
She held things together until about year 8 when it all became too much to handle.
She was diagnosed at 15 with ASD.
This was over 10 years ago now - I work in a school and the support and understanding now has vastly improved since she was in school.
It sounds like your daughter is in a supportive environment.

It’s common for girls to be diagnosed at this age, they can no longer mask effectively. It’s also very easy to think ASD traits are usual teen behaviour. They way I look at us is NT teens won’t do something (it’s a choice), ND teens can’t do something and the pressure can be too much. Can you talk the school SEN team, a diagnosis shouldn’t be needed. How about a private assessment? My daughters was around £2000 and has helped her to understand how she’s feeling. They also gave suggestions where adjustments would be most useful. Good Luck.

Very similar to my daughter 14, she was diagnosed with autism in Year 8. The first term of year 7 was fine then she basically couldn’t go to school. Her mental health and anxiety left her unable to leave the house. I wish I’d listened to her when she said she couldn’t go to school but was told by professionals that she has to go to school and I must make her. She’s home Ed now and doing so much better.

My DD has similar issues, I’m not sure if she will ever be diagnosed with ASD but her sensory issues and anxiety mean that strategies to support ASD girls are really helpful for her regardless.
CAMHS offered me a parenting course on anxiety that was interesting in helping me understand what she was physically experiencing as a result of being in school.
I’ve found Dr Naomi Fisher and Eliza Fricker (Missing the Mark)’s work on children who are not in school helpful, you can start off by looking them up on Facebook (if you are comfortable using that platform). They advise focussing on building a trusting relationship rather than enforcing going to school.
So the idea is that the child is experiencing tummy aches, feeling hot, etc. as a result of anxiety. The adrenaline is rushing through their body (because their amygdala is getting them ready for fight or flight etc.) because ultimately school does not feel safe. So we should listen to them and validate what is happening rather than just saying “you’ll be fine, off you go”. The alternative is just that the child burns out and ends up unable to go to school anyway.
I also found the Not Fine in School and Autistic Girls Network websites useful. I’m hopeful that as she gets older, secondary school will feel like a safer place for her and she will feel less anxiety about going in but if not I will have to accept she may not get a “traditional” education at all.

I would also add we no longer do “fun” things at the weekend because DD needs a quiet weekend at home to recover from the previous week’s anxiety and sensory overwhelm. You may have to give up quite a lot of what other (neurotypical) people think are “normal” or “healthy” activities, at least temporarily. It takes time to readjust and accept that in my experience (I am NT).

My yr8 old has been recently diagnosed. Only one of her teachers had concerns, other wise at school was a quiet, very well behaved high achiever. The language and communication team came into school and suggested ASD assessment was appropriate considering what they observed. ASD is diagnosed by a multi disiplinary team of highly trained health professionals. Diagnosis of ASD is considered to be a protective factor for mental health.

Parenting a child with ASD is different to parenting a neurotypical child. Things which maybe the right thing for most NT children maybe very stressful for your child.

Ask for meeting with the school
senco. Look at the adjustmemts in autistic girls network website. They also have a book called nurturing your autistic child. Look into heavy work. Fidget toys can
help, order a box of different types to see if she likes any of them.

Increasing accessing the nurture area is not a bad thing. It means she recognises her needs and it able access support.

Like many we went down the private assessment route.