Worried about DD aged 12. Think she could be autistic

[NeedSleepNow]

Hi i'd love some advise please. My DD is 12 and is finding life very difficult at the moment and I don't really know what to do to help her.

When she was younger she had a lot of sensory issues and anxieties. She couldn't wear certain materials, certain smells, sounds, foods etc were unbearable. Any change in routine led to awful anxieties for example each time she changed school teacher her anxiety would present as a different physical symptom one year she became convinced she always needed a wee and would go every 10 minutes, the next year she was convinced she wasn't dry after going to the loo and would wipe over and over until her skin was red raw almost bleeding. One year she would wash her hands over and over again. It gradually settled as she got older, she was quiet but had a lot of good friends and she enjoyed primary school. She was a very kind, polite, sweet little girl.

Fast forward a few years and life is so different. She has had a massive change to routine which has deeply unsettled her. Her dad and I divorced and her relationship with him has deteriorated dramatically as he has little patience or understanding for her feelings. The family home was sold, we have had to move in with wider family for a while but what was meant to be just for 1 month has so far turned to 5 and we haven't moved to our own place yet. She started secondary school last year, we now live miles away from friends, clubs, school etc and she is struggling to cope.

I spoke to school early on in year 7 and explained that she was finding life hard with moving, divorce etc and they said they'd keep an eye on her. She then had some therapy sessions at school but she didn't find them useful (although she had play therapy in primary and found that useful) . She hates secondary school, worries that she doesn't fit in, everyone will say she's ugly, has the wrong clothes, think she's strange. She has refused to go on occasion just lying on the floor sobbing, she has almost completely stopped going to her out of school clubs, screams, sobbs and shouts when anything upsets her. It's like she has regressed to being a toddler style days. It's having a huge impact on her brothers now and I feel like the family is falling apart.

I don't know what to do to help her. I think she might be autistic and have wondered this for some time, but then again it might be just that she is struggling with all the change in her life at the moment and is having problems regulating her emotions and her mental health had been affected.

Her sensory issues are much more noticeable now, particularly with food, noises and crowds, she has started flapping her hands whenever she is stressed, I think she coped with primary school as it was a small predictable environment but secondary school is all too much for her. I wonder if she spends the whole school day masking (she has a deep fear of being judged and noticed at school and just wants to blend in) and she just can not cope once she gets home.

I don't know how to help her. I will speak to the school again once she starts back in September but I didn't find them very helpful before. Should I instead be speaking with the GP? If I did think she could be autistic, how do you get referred for an assessment? Would I diagnosis even help in any way, I wonder if a label would make her feel worse or could it help her?

Sorry for such a long post, I just don't know what to do and how to help hold my family together so any advise would be gratefully received.

Oh dear I sympathise massively my daughter at that age really struggled with crowds, noises and & others eating / drinking. It was better without us with friends, probably masking.

She was since diagnosed with autism, and I personally believe that age was really hard due to the hormonal changes on top of everything else.

It was in another country so not sure how to start the process in the UK.

What helped the most was a calm environment, lots of outdoor time. We excused her from family meals and made sure to do other activities together. Current school is walking distance.

Thank you so much for your reply. Yes hormonal changes added on top are definitely an extra issue.

Time outdoors does help my DD sometimes, the problem is if she's not in the mood for going out she makes such a fuss the whole time that it ruins the day for everyone else.

Have you had a meeting with the SENCO in school? There may be other adjustments that can be put in place to support her e.g.a quieter space at lunch time, leaving lessons early to avoid the corridor crush, access to a quiet toilet. It does sound like she’s been masking. Sensory needs tend to be more obvious when under stress.
The SENCO should know the pathway for a diagnosis. There are long waiting lists usually.
You can absolutely go via your GP.
You could try filling this in as it would be helpful info for the SENCO and GP.

https://novopsych.com/assessments/diagnosis/autism-spectrum-quotient-adolescent/

You could also seek an OT sensory assessment ( not all OTshave this specialism and a social communication assessment from Speech and language
Good luck, sounds like you are going through a lot.

Thank you @24Dogcuddler that's really useful.

I only saw the school's pastoral team last year. I requested to see the SENCo near the end of term but they said it would be easiest to contact them again in September and make an appointment then so I will do that as soon as the school is open again.

I wonder if she spends the whole school day masking (she has a deep fear of being judged and noticed at school and just wants to blend in) and she just can not cope once she gets home.

It sounds like it. This is known as the coke bottle effect or after-school restraint collapse. It signifies unmet needs at school. You need an appointment with the SENCO to discuss additional support.

The school is likely to tell you DD won’t get one, but you could also look at requesting an EHCNA - on their website, IPSEA has a model letter you can use. You may have to appeal, but it sounds like you could get one despite the fact many schools would incorrectly tell you otherwise.

Not all ICBs commission sensory OT on the NHS any more. If your area does, it is worth a referral. In some areas, you can self refer. You might find the book the Out of Sync Child helpful.

I would also speak to the GP.

The referral process depends on the area, but the school &/or the GP will be able to refer. If you wanted to go down the right to choose pathway, that would be via the GP.

Most support is based on needs rather than diagnosis. However, diagnosis is important for understanding yourself IMO.

Thank you @flawlessflipper that's really helpful. I just feel clueless about the whole process at the moment. I will request to see the SENCo once the school is back next month