Autistic shutdown or depression?

listening to music is considered a type of meditation so thats actually good. Learning to play it is even better

u can do meditation by doing eg adult colouring, jigsaws, knitting, sport, walking, Sudoku, crosswords, chess, word finding games, where's wally, all types of puzzles, board games. 

Thank you Aidie, I willl certainly give the article a look. Thank you also for the tip about meditation. My daughter listens to music a lot, but she hasn't tried meditation. I will see if she will give it a try.

i had a try at boxing. my friend talked us into a club, he wanted to be a boxer.  After a lot of persuasion, I was asked to have a go. I defeated the sparing fighter !  The boxing club tried to recruit me on the spot but I already knew about the associated brain damage within boxers --- no way ! 

 --- there are many mental health sufferers in boxing eg  Tyson(?), Bruno(?) .

also my face hurt 

Schools have been turned into Warzones. And some kids cannot cope. As one member here would say, fight-or-flight is set to the max. And we're too passive to fight.

its really hard to tell if depression is there because it can be very  subtle and you need to discuss this with a specialist in depression/GP.

But it does sound like a shutdown to me. Assuming she is experiencing shutdowns it could be going to school that is triggering these

here is a very good article on shutdowns. Please read the section on how you should react to a shutdown. 

https://autismawarenesscentre.com/shutdowns-stress-autism/

BTW i had shutdowns everyday ( sleepy shutdowns ) which I have reduced ( to one per week ) with a regular meditation practice of 30 mins per day.

hope this helps in some way.

Thank you. I think she is now in a depressed state. (I've suffered from it myself so recognize the symptoms). The doctor is doing me a letter for school. I think it will be a while before she returns. Just taking one day at a time, gently doing what she can.

I will bear your comments in mind. Thanks for responding, it really does help.

You have to be careful about her diet, because if she's having digestive issues, that might cause anxiety and depression. I cannot eat gluten because that'll cause my body to not function properly, but she might have different types of intolerances and allergies, so get those things sorted out. This is so important, because anything that causes digestive issues, can disrupt the entire body. 

Also, if she is getting upset after she gets back from school, and reacting very intensely, afterwards the body might get suddenly tired and drained, and maybe that's why she goes into a trance-like state where things are muffled and she can barely speak and move, the body could be exhausted from the intense reactions she displayed earlier, and you were right to let her sleep in longer.

Thank you, I will do that. I am concerned that several days on from her last big upset she is still finding it hard to talk, hard to move, hard to do anything much. I am worried she has now fallen into a depression, don't know whether I should tell her doctor, or just give her more time. I find not being sure what to do for the best very hard.

Hi.

I was like her. Exactly like her at an early age. At least she has people around her who obviously care.

Thinking about what helps with me is giving her space to be alone she is having a Complete meltdown these are serious and need to be taken slowly and carefully.

Try not to talk too much or be loud and just let her retreat away into her safe space. But also be there for her in the meantime.

The school is aware and she is going to get help and understanding at a relatively young age.

Your an amazing parent. I'd just let her retreat for now and take it bit by bit are her pace. 

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

Thank you for taking the time to reply, and in so much detail.

Her tummy issues were a few years ago. Currently seem to be okay but I will bear your advice in mind.

Thanks for sharing your experience of "brain fog".  Although it was alarming to witness, I feel I understand it better now and that it's not uncommon and it will pass.  I think you describe very well how my daughter must feel at school.  I am waiting to hear back from the SENCO about what they can put in place for her to help ease the transition. I am also looking into whether I can realistically educate her at home.

Regarding the "brain fog", have you found anything in particular that helps you come back from it?

Oh... I would sort out those chronic stomach problems as soon as possible. If she's experiencing trouble with digestion it could be anything. I have a severe Gluten/grain intolerance. My son has a severe egg allergy but gluten is fine. These things kept me from being able to learn, and gluten can be deadly if left untreated after 20 years. These allergies get worse with time. I got so sick at one point around 17 I was unable to function for 3 months. It can take some time to get a proper diagnostic for these things. In my 20's my father had suggested a temporary immediate solution: pair down my diet for a few days to very simple things which no one has allergies to: rice, plain chicken, pears, carrots maybe. Then several days later try introducing one thing. And one other the next day and so on.  

As for the 'brain fog' this happens to me when I'm emotionally overloaded, which can come from sensory overload - I feel like I go into survival mode. Extra-sensory experiences make me feel invaded, violated, assaulted. It's so compassionate you helped her to sleep it off. The stark contrast between the peaceful and breathable space many of us seem to feel with Covid versus suddenly being thrown into a 'herd' and social explosion. I wouldn't cope very well either. The lights can be oppressive, a billion frequencies bouncing off all the walls, too many conversations all at once, the psychological demands, the creepy social nuances, feeling suffocated from too much all at once... is there a way for her school to help her ease into this transition? 

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.

F

yes you're definitely not alone 

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.

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

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.

Thanks Leah, that's kind of you. Just good to know that I'm not alone with it.

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

first of all, I have to start off by saying you sound like an amazing parent/carer. 

I would have loved to have the support system that she seems to have. 

second of all, I can totally understand why her anxieties are so high from the overwhelming changes. 

I love COVID-19 too. 

because you have the rights to tell people to stop getting so close to you and all that. 

she might really be struggling 

I'm here if you need any questions