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PDA/ASD Diagnosis - Carers UK Forum

PDA/ASD Diagnosis

For issues specific to autism / Asperger Syndrome.
HI There

I have a daughter who since starting High School has completely struggled with everything and am waiting on a CAMHS assessment on 19th January. She has refused school now for months and despite me asking SW for help am still on their to be allocated list!!!! She ticks some Aspergers boxes but not all but ticks every box for Pathological Demand Avoidance Syndrome. She has friendship issues, eating problems and can become very angry and aggressive if things are not on her terms which can be just hormones - but there is so much more to this.
She has regular meltdowns at the slightest thing and is not sleeping till 2/3/4/5 am. She has been to and from the GP continually with sore throats, feeling sick etc and was prescribed Melatonin but refuses to take it.

Her twin sister has ADHD/Dyslexia but is coping well now at High School. She is on a concentrating drug and melatonin to help her sleep.

I am a lone parent - trying to work part-time and also have a Mum with dementia who I help once a week too and am the main contact for medically.

I was told by a fellow PDA Society Member to contact here for help but just got the answer machine. Hopefully I can try again tomorrow.
Hello Mhairi and welcome to the forum.

The Carers UK Adviceline telephone line is often oversubscribed and it can be difficult to get through, but if you email them they will normally get back to you within 3-5 days.
Need expert advice? You can talk to the Carers UK Adviceline five days a week, no matter where you are in the UK or how complex your query is. We do benefits checks and advise on financial and practical matters related to caring.

0808 808 7777
Open Monday to Friday, 10am to 4pm

The Carers UK Adviceline also includes a listening service, there for you to talk through your caring situation with a trained volunteer who understands what you are going through. Available Mondays and Tuesdays, from 9am to 7pm.
If you're looking for specific advice regarding your daughter's condition then you might want to look at the MIND and Rethink websites as well.
Welcome to the forum. You have a lot on your plate right now, I've also been a multiple carer, trying to spread myself too thinly, ending up very seriously ill.
Reading through your post, I was concerned to see that you are trying to help mum with dementia, and that feels like a "Bridge Too Far" to me. When did mum last have a Needs Assessment from Social Services? Is she over, or under, 65?
Social Services can be brilliant or awful. However, they are supposed to do assessments within 4-6 weeks. I therefore suggest that you write and make a formal complaint about the delay in allocating your daughter a SW, and that it is imperative this happens without further delay.

My youngest son (15) ticks all the boxes for PDA and has not attended school for nearly two years. He gets five hours of home tuition from the LA and will be attending a PRU on a one to one or very small group basis for his tuition tomorrow (after the return from Christmas). He has screened positively for ASC and (interviewed by psychologist, observations provided by tutors and developmental interview provided by me) but he refuses further assessment as recommended. PDA (even if not diagnosed) is extremely difficult to deal with. With my son, it centres around intense anxiety and an obsessional need to control.

I also have some additional caring responsibilities and all I can advise is, please, try to find some time for yourself and take care of your health. It is really hard.
When Education wanted to send my son with learning difficulties to an unsuitable school, I had a great deal of support from IPSEA. They are independent of the LA and experrts on speicial need education law. In the current climate, it seems that an LA will pay for as little as they can possibly get away with, but with IPSEA on your side, it shows you mean business. Good luck, it's very stressful.
A little late to the topic as I've only just joined CarersUK despite being my daughter's carer for 8yrs.
Having a diagnosis of PDA is no magic fix in the education system, there is a lack of training and understanding due to it being a fairly, newly recognised subgroup of Autism(some people still think it's fictional :mad: ), my daughter has ADHD and ASD/PDA diagnosis and until yr8 everything was great, it then started to fall apart and school are now insisting her behaviours are not Autistic, hmm, no they're not they're PDA, it's different! She's yr9 now and they have absolutely no idea what to do because they don't know which kid they're going to get each day (or minute)
I am a lone parent but it is just myself and my daughter, I don't have added pressure of work and caring for my mum, I have no idea where you find the energy, never mind the time. Full respect to you, I hope you found the support you were looking for. xx