My name is Sarah. I have a beautiful daughter who has gone through some extremely hard times during the past 5 years. Three months ago she was diagnosed with ASD at 15 years old. She was misdiagnosed 5 years ago by CAMHS after years of trying to get assessed. I feel very angry that the past 5 years could have been avoided or have at least not been as awful if she had had the right diagnosis and help and support back then. She is depressed, highly anxious, has self-harmed and recently spent 3 months in a high dependancy mental health unit (300 miles away from home) where she was finally diagnosed! As those of you in a similar situation know, we have good days and bad days and absolutely terrible days. The time that my daughter was in hospital was the worse time of my life and I almost had a breakdown with the stress and worry of it all. She is back home now and has tried to go back to school, however, she just found it too difficult and I will not, under any circumstances, let her get that ill again so one of us is going to give up work so she can be schooled online for her final year. Very big decision but it's too late to get her a Statement of Needs now which would have greatly helped 5 years ago and opened up so many doors for her. Her school have been OK but unless you have personal experience, you have no idea how the tiniest thing can make all the difference to her feeling safe and less anxious whilst there.
I joined this site as I haven't yet spoken to other parents who are going through similar situations and I think it would help to make friends and support each other so we don't feel like the only person in the world going through these hard times.
I look forward to making new friends!
Hi Sarah. My name is Rachel. My twin daughter is also 15 years old and she has really struggled with severe anxiety for the last couple of years, and recently slipped into depression. She joined Healthy Young Minds early this year at our local hospital. She is currently undergoing a speech and language assessment and is on the waiting list for an ADOS (autistic assessment).
My daughter use to have a best friend, but a couple of years ago decided didn't want to be friends anymore and therefore stopped talking to her. She didn't understand why there would be a problem in just not speaking to a friend anymore. Since then she has become isolated spending all her spare time in her bedroom. Then less than two weeks ago her depression seemed to take over. She said she was ignored at school and didn't feel human anymore. Last weekend she sat on the floor, didn't move from the spot and wouldn't eat, drink or talk on "shut down". Advised to get an emergency ambulance. Was 9 hours in A and E discharged eventually after sitting up all night talking to a couple of child phycologists. She would only communicate by writing down (not seen this behaviour before). When asked she wrote down that she didn't want to be here anymore but didn't have a plan. When we got her home she went to sleep, but when woke she refused food and drink and just lied motionless on her bed not talking. I phoned the emergency doctor who told us to go to A and E again. My husband drove her in this time. After 4 hours and checking all bloods and blood pressure she was discharged.
The most disturbing behaviour so far I have seen was this Tuesday night. She had a college interview, as she is due to start college next year. She insisted in going in on her own, and then wouldn't say how it went. When she got home she was very agitated. About 10pm we were ready for bed and she was sitting on floor. I'd gone in to talk to her but she started saying "Don't act like were close, because we're not. You don't know me". When I turned away (trying not to react although very upsetting) she said "You're being passive aggressive now". It was like she was picking an argument, so I walked away. Then she started to stand disturbingly over the top of the stairs. She then started banging her glass notice board really hard, banging her head against the wall, then screaming "Get out" in a really alarming way. She also started crying and then laughing and then whispering in her breath. All I could think was that it looked like a breakdown, never seen anything like it before. Called 111, they heard her screaming in the background. I said she was a danger to herself. They first sent an paramedic in a car, who turned up with two police men for his security! Later an emergency ambulance turned up. By the time the emergency services turned up, which was around one and a half hours of her screaming and acting in a disturbing way, she was back on "shut down mode". She was standing in her room not speaking or moving. Managed to get her in the ambulance and back to A and E (third time in as many days). My husband went in the ambulance with her, so I would stay with her sister at home who had got out of bed and was pacing the house. I got a call from my husband to collect them both at around 7am. My daughter was back to normal and insisted she wanted to go into school, although had not had any sleep, which she did.
Since then we have had a couple of meetings with different consultants. It was decided that she should try anti depressent sertraline, cognitive behavioural therapy and counselling. She has taken her first tablet today, but were told it could 4 -6 weeks before we notice any difference.
We feel maybe the impact of leaving secondary school is having a big impact on her and could be the main reason for this new behaviour. We are still waiting for the autistic assessment, but her behaviour is confusing the medical profession somewhat.
My heart goes out to you. I feel like I know what you are going through, and how it takes its toll on your own health. You've made a really big decision to home school and I really hope it all goes well for you. It sounds like you are doing all the right things and that you are a very supportive parent.
Dear twin mum,
I'm sorry to hear about the difficulties that your daughter and family are experiencing. This must be a very stressful time for you all.
If you need any support, information or advice regarding the diagnosis process, please do contact our Helpline. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). The Helpline is very busy so it may take a couple of attempts before you get through to speak to an advisor.
The following link has further information: http://www.autism.org.uk/services/helplines/main.aspx
We also have a parent to parent service providing emotional support to parents and carers of children or adults with autism. The details are here: http://www.autism.org.uk/services/helplines/parent-to-parent.aspx.
If you are really concerned for your daughter's wellbeing you may also like to contact your local safeguarding team via your local authority to get further support.
I do hope the situation improves for you all soon and that this is of some help.
Hi there .
I’ve just read your post and thank you for sharing this . I could of been reading about my own daughter who has displayed all of those symptoms . High levels of anxiety . School avoidance . Self harm . Isolation etc . The past 4 years have been dreadful . Finally after all these years she has got a diagnosis . I just wish this could of happened sooner . That could of prevented so many problems .
Hi I'm Vanessa. My daughter always seemed different or misbehaved. I found it frustrating to deal with the doctors and everyone else saying it was me just being a worry wart mother. They said she was just being a kid and that it ran in the family on her dad's side to misbehave. My older daughter was completely opposite of her. Stephanie my oldest thrived in school and obeyed me. Stacie hated school and disobeyed my every word with a smile. She was the baby and daddy's little girl so she got away with murder. I didn't understand the differences between them when i raised them both the same. After 11 years of life and its ups and downs i was divorced and in a new relationship and Stacie was no longer daddy's little girl because he decided to go downhill with an addiction causing him to forget Stacie she started puberty and became depressed which spiraled into bad times. After an accidental suicide attempt....she claims she doesn't know how it all happened....she was hospitalized and diagnosed with psychosis, bi-polar, anxiety and OCD. Initially it was schizophrenia due to intrusive thoughts and that she didn't remember the incident as well as her rapid mood changes. Later it came to me the methods used on her little brother who regressed at 2 years old seemed to work with Stacie as well. However it took a bit longer to realize she was possibly autistic. After making her IEP at school aware and testing that was confirmed and it was shocking. Yet not. I always knew something was different but everyone said she was fine. I didn't want to believe she was crazy and i searched for months to get the doctors to listen to me that something else was to blame. A positive ANA confirms she may have an autoimmune disorder. Stacie is the Stacie she always was but now it all makes more sense and regional center is our next step in this chapter of our lives. I wonder how much more bad will come. Will she always struggle now? Like she had always struggled....except now i know she needed help and i feel horrible about it all. Horrible i was not educated enough to realize she needed help. I just had no way to knowing when the doctors all said she was fine and didn't listen when i complained she was a handful....they didn't understand cuz all kids are and i couldn't explain it better without sounding crazy.