Can somebody, anybody, tell me what on earth I am meant to do?!

[BlackBlackBlackBlackNumberOne]

Evening everyone - this is a new username but I've been here since I was pregnant with the DD6 this post is about!

Can any body give me even a tiny sign post as to what I am meant to do with my daughter!

It has been widely accepted (nursery, and school) that she has fairly severe ADHD, we're also fairly certain she may have autism. Her school, whilst amazing with everything they are doing and have done with her aren't hugely communicative. She is on the waiting list for a diagnosis with heavy senco involvement. In our area the process for referral and diagnosis has recently changed however prior to that it was horrendous for waiting times and provisions.

I have visited the GP multiple times over the years, at times in tears, and have been told "I can tell you now from the behaviour I'm seeing that this child has ADHD but it's not something we can help with, you need to go through the school." I was already trying to go through the school and the GP was a last ditch attempt.

At the moment, we are watching her unravel and watching new behaviours appear and become prevalent with absolutely no support other than the school doing as much as they can. I am a ftm and well versed in mental health care (I've cared for my mum since I was very young) but this is entirely new to me so I do not know what I should or could be doing!

Sometimes I feel like I'm going mad and I worry constantly that I'm over analysing her however it is very apparent through her behaviours that things aren't NT with her.

I keep reading about pushing for diagnosed, applying for an echp, claiming dla etc etc however I have no idea what I should do, when I should do it or if it's even necessary! I've added what I'm experiencing below for extra context and am so grateful for all and any replies as I feel I'm banging my head on a wall!

For context, what we are witnessing:
Zero concentration. She is entering y2 in sept but can concentrate for 5 mins max unless it is something she obsessed with

Incredibly impulsive with zero regard for her own safety

Stimming - whether it's rocking/repeating words in a whisper/rubbing her face etc

Meltdowns (this is newer - she has always been highly strung for want of a better word however the last 6 months this has ramped up) - she loses all control, screams shouts, hits, punches,.kicks, runs away and generally puts her self in danger.

Doesn't hold friendships nor have a friendship group. After 10 mins or so playing with friends she takes herself off

Constantly shouts or repeats herself.

Cannot play alone - imagination games are a big no no.

She appearsnto be mimicking tones of voice/facial expressions instead of if being natural...I can't explain this one!

Can barely read or write.

I could on.

I am not imagining this am I?

Hi @BlackBlackBlackBlackNumberOne it’s tough isn’t it! It sounds like you’re already doing a lot, but the waiting lists are long for diagnosis.

My DS 4 is diagnosed with ASD and on pathway for ADHD diagnosis as they won’t diagnosis until age 6 in my area, so I see a lot of similarities of what you describe with your DD.

I’m in Wales rather than England so apologies if I get somethings incorrect, but as far as I know applications for EHCP’s and DLA are needs based rather than requiring a diagnosis, so you can start the ball rolling on those. What I will say is keep any evidence you can, reports for school highlighting any issues, any SENCO reports, and support that’s in place, and any medical reports you have.

I guess in terms of whether you want to push for diagnosis that’s an entirely personal decision, for me I found getting the diagnosis really helped, and it closed of the “is he / isn’t he” thoughts I would constantly battle with, and has helped me accept and become more confident in my parenting.

The thing that’s helped me the most has been attending groups for parents of children with ADHD / ASD, I have learnt so much from them, as well as having people around who completely understand the struggles.

Hope this helps!

You don’t need to wait for a diagnosis for an EHCP or DLA. Request an EHCNA - IPSEA has a model letter you can use. If needed the school can apply for high needs top up funding in the meantime so they can provide more support. What support is DD’s school currently providing? Apply for DLA - use the Cerebra guide to help you complete the form.

Try keeping a detailed diary to spot triggers and deescalate the situation before DD reaches meltdown.

Have you had a home OT assessment to look at ways to make the house safer.

Some find Ross Greene’s book The Explosive Child and Yvonne Newbold’s resources helpful.

I support a child in primary with ADHD and likely autism. When I started with him he was unmedicated and every day was a tremendous battle, just to get him through the day with frequent meltdowns, sometimes resulting in suspension. He didn't learn much at all, he just couldn't concentrate. During the time I have been there he has been put on methylphenidate and the difference is amazing. He is now moving forward educationally and has the bandwidth to be able to work on strategies to manage his regulation. I know it's not for everyone but it's been amazing to see the results in him.
I'm ASD/ADHD too.

ADHD medication won’t be an option for the OP at the moment because there isn’t a diagnosis and most won’t prescribe ADHD meds without a diagnosis.