Published on 12, July, 2020
Hi all.
I’m hoping for some advice about my 12 year old daughter. I write this in tears, as I’ve had an awful day of being give the run around from several different services and I’m honestly lost as to what to do now and where to go.
my daughter has always been painfully shy and quiet, only 1/2 friends in her life, impossible to make new friends, fixated on one friend at a time. She won’t speak to anyone other than family and close friends. She doesn’t speak hardly at school. She told me 3 years ago she felt sad and feels different and doesn’t fit in.
I went to the doctor and she started CBT groups for 10 weeks, but it didn’t make a difference. She’s developed this refusal to go to school, her sats caused her to have physical panic attacks, anxiety, worry etc. she struggles with maths the most, like really really struggles, homework is her throwing herself round the floor saying she can’t do it, getting angry, lashing out etc.
fast forward to September this year she started year 7, this seems to have triggered her. She’s afraid of large crowds, she’s hearing all sorts of snogging noises likes pens clicking, kids chewing, tapping on tables, and can’t focus on learning for the noises. She having panic attacks. She’s unable to deal with her emotions, lashing out at home.
she’s on a referral list for her anxiety but I had to call the crisis team recently as she was saying things like she’s not meant for this world, she’s a freak, she wants to disappear.
crisis team told me they were doing a direct referral to CYPS but turns out they haven’t and won’t, but they didn’t tell me. I’ve called our local children’s service and shes on the mental health pathway for an assessment.
when I spoke with the crisis team they asked if anyone had explored undiagnosed autism. They feel she’s gone under the radar at school due to her shyness etc. I said no one has ever said anything however I had been looking at this myself for a few months.
long story short, I’ve just been told that she cannot be referred for neuro, as neither school or gp have noticed this. I can’t refer myself. Surely this can’t be right? From what I’ve read, so many girls in particular go undiagnosed??
I’m at a loss where to turn. Her new school don’t know her enough, she’s been there 5 weeks. There’s so many traits that I can’t even reel them all off here.
she needs support, we need to support, and I’ve rang 3 services today and all are passing me from pillar to post. I just don’t know what to do or where to begin but we can’t continue like this.
I’ve just noticed the reply from Bees - I didn’t know that and it sounds ideal.
I just want to say how much I empathise and express solidarity. Both my sons have a diagnosis now - but we’re both diagnosed quite late (at 10 and 26 years old). I was diagnosed this year too.
My youngest son developed Selective Mutism on starting school, and I think that’s partly why his autism was not picked up because so much focus from the school was on just trying to get him to speak. I can honestly say that he had the most terrible time at school and deep down I wish I’d just taken him out. We were always battling to get him more help, and rarely succeeding. I feel so sad about the whole thing, and he’s still suffering the consequences of the very difficult existence he had at school now - his mental health has suffered and it’s all very difficult to unravel and find ways to move forward.
In my opinion you need to prioritise your daughters mental health. Does she open up to you about what she feels she needs, or what she feels would help her? What does she want to happen? Would she be better out of school?
Education is very important but it’s not more important than your daughter’s sanity. These children are at risk of suicide - never underestimate the fact that pushing children beyond what they can bear can have serious consequences. So please listen to what your daughter is telling you, really listen, and let her know that you are going to do everything you possibly can to help her, even if that means taking her out of school for a while. If she’s deeply unhappy at school she probably won’t do well there academically anyway - so taking her out might benefit her education in the long run.
Either way - sanity is more important than having GCSEs.
She just needs to know that there’s away out of the current nightmare she’s stuck in, and that you going to do everything you possibly can to help her to feel better, and that her being happy means more to you than anything else.
She does sound autistic. Don’t take no for an answer from your GP - insist on a referral. Of course you could pay privately for an assessment if you have the funds to do that.
One other thing: I know from experience how terrible all this is as a mother, and the pain we feel to see our children so unhappy and the school letting them down is horrendous to witness. The feeling of powerlessness is terrible. Take care of yourself and get all the support you can - because you must feel totally drained. You’re not alone though - so many in this community have had the same experience. Take care, and good luck to you and your daughter x