Apologies if this gets a bit ranty. I'm largely at my wits end and I really don't know what to do next.
We noticed our child might be neuro-diverse towards the end of Primary School. The signs were probably there sooner, but they're the only child I've really known and they always reminded me of me ( spoiler alert: I probably have ASD myself).
Started process to get formal diagnosis in September 2019 (when in Year 6), naively thinking this would kick in before secondary school. We got to Triage stage in March 2020 when the bottom fell out of the world. Finally managed to have an online assessment in July2020 where it was just confirmed what we already knew. They might have autism.
Secondary School started in September, but the school refused to include them as SEN without diagnosis. That, coupled with them starting period, and the whole Covid backdrop led to a severe decline in Mental Health. Panic Attacks, Self-Harm, Suicidal thoughts and developing a severe sensory reaction to eating/breathing which they term Misophonia.
We finally get a proper assessment in April 2021, it took longer as our child would refuse to use Teams/Zoom and so we had to wait for CAMHS to start face to face sessions again and a few months later we get the ASD diagnosis - a mere 21 months after starting.
CAMHS referred them to School Cluster Pastoral Care (and that alone)... the school said they didn't subscribe to that but would have their own in house counsellors from next school year. Given there was only 2 months left and much of that was in lock down - we let it run. We did speak to CAMHS about extra support but as far as they were concerned they'd made their diagnosis and we were discharged.
To coincide with Year 8 starting we paid for private CBT. It's cost us a fortune, but they really help - if only as a reset button for the week.
Across Year 8 and Year 9 (where we are now) school support has been woeful. We have meetings, we talk about what support our child needs. The teachers nod, they agree, they sympathise - nothing changes. We've had cases where my child self-harmed in the middle of a lesson, was taken out by the teacher and threatened with isolation and nobody spoke to us about it. I complained and didn't get a response for 4 days and when I did get a response they said they didn't know anything about it. They are seemingly trying a "tough love" approach, reasoning that these are cries for attention from our child. It's such a misguided approach, and so far off the mark, that you'd think it was a plot line in a dark comedy - except the reality is that you're watching a school gradually add fear of authority to an already long list of anxieties our child has to deal with.
Meanwhile the self harming is getting worse and we've had a suicide attempt. With CAMHS washing their hands of it and School unable to support we try GP. GP refers us back to CAMHS, we had a new CAMHS assessment in August 2022 (after 9 months of waiting) and are still waiting for the results of that 3 months down the line.
Effectively we're 3 years down the road, watching a sweet & intelligent (but neuro-diverse) child turn into a teenager with serious mental health concerns that's failing at school and spending al day every day crying and looking for sharp objects (obviously these are kept away as much as humanly possible).
I think part of the problem is that they're in the terrible position of needing help, but not a lot of help. Of acting out, but not acting out too much. Struggling with lessons, but still getting a passing grade. They're easy to ignore but they need help so much.
If I, as an adult, walked into a doctors surgery and spoke in my childs words as if they were my problems I'd be offered near immediate counselling and prescribed medication. Because it's a child it's somehow okay and normal to wait years and years watching their life slipping away and wondering if they can ever recover. It's so heartbreaking.
I feel lost in the system. I have no idea what I can do other than sympathise, hold them (until my breathing causes them sensory harm and they have to leave ... god that makes me feel bad) and tell them that it will get better (will it?).
The only options I can see are;
1. Go hard on the school. Keep at them, keep complaining, try to involve OFSTED (although I don't think they can do much).
2. Complain through NHS. But I don't think we're being unfairly dealt with comparable to others - it feels like the whole system is on the brink of collapse. So I don't think a complaint will achieve anything
3. Change Schools... but their friendships are so important to them (although that's this months friends, friend groups and social interaction have been a constant source of depression and turmoil)
4. Go Private for Mental Health Care ... they seem so few and far between with waiting lists that will take us well into 2023 and 2024 ... and the cost just feels unrealistic in the current climate (Not that I want money to be a barrier)
As I said before, I'm probably on the spectrum myself, so dealing with all these parties doesn't come easy - but I'll walk through fire if I have to.
I don't know, part of this post is probably more therapeutic for me - giving me the opportunity to scream into the abyss. But if anyone out there has any real advice I'd love to hear it. Hell, I'd be happy just to hear a few "Me Too's" and "I understands".
