Published on 12, July, 2020
Hello, I'm new here and would really appreciate some help or advice. My daughter is 15 and we've just started the process of diagnosis for ASD. Over the years when she has struggled to cope with life she has had chronic tummy problems, pulled her hair and cut herself. She is currently controlling those urges but has recently displayed new behaviour which I have not seen before. As she finds it hard to be around many people, lockdown suited her fine and the return to school has been overwhelming. In the last few days, once home she has become very upset (sobbing, hitting herself, saying she can't go on) and then going into a trance-like state where she is unable to speak and barely move, after which she is exhausted, even the next day. Up until today she has made it into school, but this morning she managed to get up and dressed then stood at the top of the stairs, weeping and looking almost asleep, so I told her to go back to bed and she has been sleeping ever since. Obviously as a parent it is very distressing to see your child so unhappy, but also this new "shutting down" behaviour is quite frightening. Afterwards she said she could hear me but it was kind of muffled and far away. I am at a loss to know what to do and how to help her. I am waiting for a call from the SENCO at her school to see what they can suggest to help her, but in the meantime I am concerned she is retreating inside herself more and more. I would be grateful for any thoughts or suggestions.
Hello
I hope that my experience can help a little. My 17 year old daughter (diagnosed with ASD just before Christmas) displays similar behaviour, although it is more 'meltdown' than 'shutdown', when there are any changes in her life. When she started at Sixth Form College, (before she had had her diagnosis), she was having enormous 'meltdowns' where she would smash things, cry incessantly and talk repeatedly about how miserable she was. Afterwards she was exhausted. All I could do at the time was comfort her. I had to work out what worked best - sometimes she needed to go outside to walk in the fresh air and then curl up in bed. I take her a cup of tea, just sit with her in silence and/or bring her one of the cats to stroke. It can take up to two hours to 'bring her down'. However she has not had the 'shutdowns' which sound more frightening as I am always glad that she can get her frustrations and upsets out. Before she was diagnosed with ASD she was burning herself with matches because she couldn't understand what was going on with herself and her emotions. The diagnosis seems to have helped with her frustrations and her 'meltdowns' are much less frequent and less 'violent'. The diagnosis gives her reasons for her feelings, which is helpful. It also enables us to pressurise the NHS to provide support, which we are still waiting for. But very importantly it has also enabled her college to put the appropriate support in place. She now has a Learning Support Assistant and mentor.
When she was in school and before her diagnosis she had lots of problems with attendance. The school were amazing and put many support measures in place. Some of these may help your daughter. Firstly my daughter took a week out and the SENCO came to visit her at home, she had a reduced timetable dropping a subject and was excused from attending Form, Assembly, Sports Day and any other large gathering of students, she had a 'safe space' in school that she could go to when she became overwhelmed, she had a 'green card' that she could show at any time so that she could just leave class if she needed to, she had special examination conditions put in place so that she did not have to sit in the busy examination hall with other students. However by the end of her secondary school life we were driving her backwards and forwards a lot so that she could come home for lunch and during free periods. It was exceptionally difficult but we all survived and she achieved well in the subjects that she cared about.
Now when she says that she can't go to college I just say 'OK, you don't have to go'. Taking the pressure off makes it easier for her to get herself together to go, although I am panicking inside that she will never go again. Yesterday she couldn't get out of the car when we got to college so we just had to drive her home again. Today she has managed to get into college.
She takes Nytol to help her sleep and Kalms in the morning. The doctor said that it was fine to take these as long as she didn't take the Nytol every night, only on college nights.
Sorry if I have rambled on a bit. I am also thinking that it would be good if she could find a way to get the feelings out as opposed to letting them shut her down. This may only be possible through working with trained counsellors but once you get the diagnosis you are better equipped to do this and find the appropriate person. As an aside I am also seeing a counsellor to help me cope so that I can support my daughter better. This is helping.
Good luck
Hello FSCR, thank you for sharing your experience with me, it really does help. Because of her history of anxiety issues, despite the fact she is yet to be diagnosed, school have already been helpful. Like your daughter, mine has a pass to leave class if she needs to, and safe people to go to if she feels overwhelmed. The trouble is she is so reluctant to draw any attention to herself she won't use either but would rather sit and suffer in silence. I will see what else school can offer, but I am also starting to look into the possibility of home educating her. Not sure how I can work that financially, but when your child is saying they don't want to wake up in the morning, you can't help feeling that drastic changes are needed.
She has tried counselling a couple of times with limited success. That was before we'd spoken about ASD so may be it could be worth another try with someone experienced in ASD.
Thank you again for your reply. I think like you I need some counselling for me too. It is emotionally exhausting isn't it. It sounds as though you are doing an amazing job and making some great progress with your daughter.
Good luck to you too.
Thank you for your kind comments. I think that we are doing OK and making progress but it comes at a huge personal cost. My mental and physical health have really taken a complete thrashing but at least my daughter's are slowly improving.
It sounds like our daughters have had pretty similar experiences. My daughter had group therapy for her OCD and anxiety disorder plus some 1-to-1 sessions when the group therapy had no impact. These were all before her diagnosis and before I had worked out that she must have OCD. Not one single mental health practitioner that she met raised it as a possibility. My daughter has just started on medication to help her cope with her overwhelming anxiety. This is something that she wanted to try. It frightens me but I don't want her to continue suffering in the way that she has.
Regarding home education, my daughter has another close female friend with ASD. Her autism is more severe than my daughters but she is academically super capable. She was home educated for the three years preceding her GCSEs. She is now in a mainstream Sixth Form College, has made some friends and is doing OK. Maybe this model will work for you?
Good luck. I think more solutions and support will become available once you have the diagnosis. I am always around if you need more support. I found 'The Girl with the Curly Hair' project and books useful when looking for material about young women with autism.
F
Thank you, that is all really helpful. I am looking into whether my LEA will accept a private diagnosis if it is 'robust'. Yes it is terrible how long families have to wait for assessment, let alone the relevant support. In my area we have been told that the assessment process has been outsourced to speed it up, but the last letter said it could take "some considerable time", whatever that means.
In the meantime, I had a call from her school today telling me she was a close contact on Friday with someone who has tested positive for Covid, so she isn't allowed back in school for another week. So that buys me some time to talk to the SENCO to see what they can offer to help her transition back. "Every cloud" as they say!
Thank you again for your encouraging words. I hope you have had "two steps forward day".
A
Hello again
I don't want to give you false hopes but at the bare minimum you will know where to look for support and solutions once you have a firm diagnosis. We ended up paying for an assessment as we were told that we could be waiting up to two years for an assessment under the NHS. This is completely unacceptable. The NHS and college have accepted the private diagnosis, which was excellent on every level and the only good experience that my daughter has had with any medical professional. It was expensive (£2,200.00) but worth every single penny. We had already referred our daughter to EWMHS (maybe known as CAMHS in your area). Having the diagnosis meant that she was then put on the right pathway (neurodevelopmental) for support, as opposed to a general pathway for people suffering from anxiety/OCD/depression. She had to wait nearly six months to see a psychiatrist and should start 1-to-1 therapy/counselling shortly. I have had to push for this. I keep in contact with her EWMHS keyworker regularly, send her behaviour reports and get her to ring my daughter to ensure that my daughter feels cared about. This is all a massive effort but is slowly paying off. I am furious about the amount of time young people are expected to wait whilst they and their families, let alone their education, suffer. We are lucky that we had the money to pay for this assessment. One day when I am less exhausted and can focus on more than my job and my daughter I will do something about this situation but at the moment I am just taking each day at a time.
Things will improve for you and your daughter but it will take time. Time is a big player. Please pace yourself and be kind to yourself. Things that I am not good at.
Do please get in contact again. There are lots of people on this forum who will offer support, if not answers. You are not alone. There are an alarming amount of other parents in the same situation and the NHS just can't offer help or support in a timely manner.
Have a good evening and I hope that tomorrow is better. Two steps forward one step back.
Thank you F, I hope you are right about more solutions and support following diagnosis. Today this forum has been the only way I have had a real (rather than recorded) response from anyone. It is really helpful, if only to know that I am doing the right thing, doing my best to do something that is really hard.
Thanks also for the tip about "The Girl with the Curly Hair" project and books. I will look them up.
I hope you and your daughter continue to make progress and have happier times ahead,
A.