Published on 12, July, 2020
I have suspected ASD for all of my daughter's life. I've tried to get help/referral on many occasions but I've either vegb looked at like I was crazy or the odd doctor who did take me seriously referred but then we were rejected. So she's not diagnosed.
Anyway, fast forward. She's now 17 and agoraphobic. She's been home educated for 4 yrs. 2 of which were amazing and it was so obviously the right thing for her. She was happy, more content, not one ounce of anger (when she was at school she had meltdowns most days), she made lots of friends and she felt good. Then anxiety hit again and she closed in. Constant panic attacks and crying and sleeping on my bedroom floor for 4 months (this exact thing happened to her at age 4, 7, 9 and 12 and this time she was 15. After 4 months it disappeared in that she was happy again and slept alone etc but it has left her with agoraphobia. She will come out with me which I'm trying to do most days but she won't go into buildings or where there are people. This has been going on for 2yrs now. She can't sit her exams or go to college (both of which she wants to do). What can I do to help her? She knows I suspect asd and I've suggested a private diagnosis but she won't agree. She's just waiting until she's "well" again so she can get on with her life. How can I help her to move forward without stressing her out more? All I want is for her to be happy.
I'm so sorry to hear you and your daughter aren't getting the support you need.
I'd recommend calling the National Autistic Society helpline about your difficulty getting a referral/diagnosis - their details are here: https://www.autism.org.uk/get-involved/about-us/contact-us.aspx
If it helps, my GP refused to give me a referral (he incorrectly told me that there were no autism services in my area), so I self-referred to my local NHS mental health service (as I needed help with anxiety and OCD anyway), and it was the mental health assessor who really listened and took the time to help me build-up a case for an autism referral. I'm on the waiting list at the moment. You can usually self-refer online for mental health, and many services will offer a telephone assessment to discuss the support needed, so your daughter may not even need to leave the house to kickstart the process.
I hope your daughter gets the help she needs and feels better soon.
I'm so sorry you and your daughter are going through a hard time right now. Not sure if they do it or if it's rolled out to all areas but my son was discharged from CAHMS at the beginning of the year after group CBT therapy. They discharged despite him pleading that they weren't listening to him or getting him. He's autistic but also diagnosed with depression and anxiety. He ended up in hospital after taking an overdose and was referred to online counselling through Healios. He's coming to the end of it now but it's been so good. He's really improved from it and I'm starting to get my boy back! It's online and you link up through video link.
I think you can access it through CAHMS or the NHS dependent on if your local authority has signed up to it. I hope it's something worth looking into.
I used to trawl online to see what I could do. Young minds have a really good page with lots of good info on also. They also have a text message service. Good luck to you and your daughter I really hope everything works out xx
She's never been able to access a psychologist or any therapy through the NHS but I have suggested we look at something privately (although funds are scarce so we couldn't do it for many sessions) but she doesn't want to after her experience with NHS. I'm just hoping for some practical advice as to what I can do to help her as it's only me she trusts.
Hi,
How about advising her to see psychologist and get some therapist/ treatments to ease her anxiety?
Good luck abc take care!
Sorry, I didn't explain, at age 4 we went to and from the GP several times a week for 3-4 months due to her anxiety. Exactly the same at 7, 9 and 12. Each time pleading the GP to help her. Each time being looked at like I was an evil parent or for her to be asked "why are you doing this to your mum?" As if she had a choice! Finally at 9 she got a paediatrician referral but he discharged her saying she needs a camhs referral and it's only the GP who can do that. Went back to gp had to camhs referrals and counseling referral. All said no. Was under the early help team but their only criteria was to get her back into school and had no interest in the root cause. Once we decided to home educate they discharged us as their job was to get her back into school. That was at age 12 when we decided to go it alone. It started off so much better than when she was in school. She was looking forward to life, had a part time job, lots of friends. And then she shut down again as she did at 4, 7, 9 and 12 and then at 15.
I've suggested we go for a private referral but she doesn't want to. She thinks I'm crazy thinking she's autistic but I've said even if I'm wrong, it would help to get an anxiety disorder diagnosis to access support for when she feels ok to start college. But she's not having any of it. I don't blame her. She's grown up knowing medical staff don't believe her. Why would she want to trust any of them now?
My heart breaks for her.
Unfortunately after going back and forth to the GP (and changing surgeries three times because no one took us seriously) she's adamant she won't be going back there about her anxiety or for a diagnosis. She's 17 so she needs to go herself. To be honest though, the GPs in our area are pretty clueless when it comes to anxiety. Only one out of many many others even considered referring her to camhs but the critetic here is to be suicidal. Self harm, anxiety, agoraphobia all gets directed to Early Help (while in school) but they couldnt get her any further. Adult services they get counselling which she's accessing online but she feels it's a waist of time because "they don't get it".
Hi, I think that taking your daughter to see the GP and explaining the situation would be best. They should be able to offer some support or refer/signpost to somewhere that can.