Shutdowns, meltdowns & masking... advice??

Hi Donna, thanks for your reply. I find your experience very relatable, for so long it never occurred to me that Annie was autistic, but as you say, looking back it is easy to spot the flags, though not in the classic "barn-door" presentation. Masking has been such a major thing - it was only last year when the mask finally broke that I saw a whole side of my daughter that I barely knew existed. I can imagine how stressful and strenuous masking is and it's no surprise to me that this has caused depression, anxiety, etc. Annie pointed out to me the other day that without masking, she would not have been able to function at all in mainstream school. It's brilliant to hear how your daughter is thriving with her performing arts, I am convinced that it is hobbies like this which keep people's mental health afloat. Even at the best of times, Annie still finds school incredibly tiring (she has always needed 10 or 11 hours sleep each night which now finally makes sense...). I heard it said once that for aspies, they not only have to navigate the academic curriculum, but the social and sensory "curriculum" as well... i.e. work twice as hard as everyone else. So basically, something has to be cut down in order to find balance. Please do let me know how things go with your daughter... we are in exactly the same boat trying to find a sustainable routine and avoid these crippling burnouts.

Thanks, Carly.

Hi, it's interesting to here from someone my daughter's age. Sixth form can be such a stressful environment, but I hope you manage to go ahead and enrol on your university course. I would be interested to know what support you are looking into for transitioning to uni, as I am aware that they have allowances in place for the struggles aspies have. Thanks for your advice.

hi i completely get this. i'm 17 years old in my second year of sixth form. 

i used to be considered smart but recently, it has gotten a lot to cope. i'm planning on studying psychology at uni in 2022. 

due to mental health interfering, i have included it as extenuating circumstances on my uni application. 

i'm not sure what else to suggest but i've also heard that some colleges are more suitable to NDs so might be worth considering that if mainstream is really hard. 

Hi, thanks again for sharing your experience. I'm so glad to here that things have got better for you daughter and she has managed to find equilibrium with her mental health. It's so encouraging for me to hear about others coming out the other side of their struggles as it can seem at the time like it will never end! It seems like music and friends have been a really positive thing for your daughter. I've realised that good things like friendships and hobbies are the fundamental thing in giving a "lift" to counteract the drains of stresses and pressures. 

Ugh, I’ve started this reply several times. So much to say, but I don’t want to overwhelm you. Navigating life being Autistic is like a part time job. Masking is a full time job. Then you have the pressures of work and/or school to add to the mix. It’s too much. Poor mental health, self harm, depression, anxiety, suicidal thoughts, panic attacks, psychotic episodes, meltdowns, shutdowns, etc etc. You just want routine and control, (the eating as an example). 

In my daughters case, things improved once she took charge of her own life. She stopped doing the things that she couldn’t manage, or bought her down mental health. I just had to take a step back, which wasn’t easy. She’s very bright, and I wanted her to do well. I wished she’d completed her A Levels (English Language, Philosophy, Religious Studies). I’ve realised it just doesn’t have to be academic. If she wants to go to college or university after her current study, fine. She’s young and has time on her side.

Things are still in the early days here. I try not to dwell on the last few years, as it was truly horrendous and nothing I tried helped. I felt useless and couldn’t save her.

She’s been at college studying music and production since September. Music is one of her abilities, so she’s took to it like a duck to water. She’s enjoying the course, able to keep up with the course work, is happy there’s no exam at the end of the course, and has made several friends, (two are also autistic) and is now also in a band. She has gigged before on her own, so this change of subject matter wasn’t a huge surprise.

Don’t get me wrong, there’s no cure, but comparing this year to 2020, it’s completely different. I’m not worried about her MH. I can sleep at night.
She still has the meltdowns and shutdowns obviously. She had a bit of a psychotic episode the other week, though she hasn’t had a panic attack in ages. She’s eating well (Despite often forgetting ) and hasn’t harmed herself all year. She still has anxiety. She can get down on herself as she’s a perfectionist. She’s getting better at realising some things can be ‘good enough’.

She has a lot stressful situations she’s dealing with right now, but she’s happier. She has time for her relationship, time to fit in other pursuits, and has time to relax.  I’m keeping track of things, ensuring she doesn’t do too much, and so far, so good.

Hi Carly

This is virtually identical to my 14 year old daughter. Sudden onset of tics and spiralled into being off all of y9 pretty much. Received her diagnosis of ASC yesterday and still watching possible ADD. Can't believe how she has masked through school and how hard she has worked to do as well as she has done. Main flag was problems with understanding friendships, being so single-mindedly into performing arts (although she is very good at it) seeing everyone else as competition and lack of empathy at home. I'm sure there's lots more but they are the main ones for now. She's now at a specialist performing arts state school and loving it! She's been accepted into a big group of like minded people and is thriving! We're working through a balance for workload and I suspect she will need to drop a subject to be able to cope with 8 and do them as well as she'd like to (oh yes perfectionism was another thing!) as masking continuously through the day is too much.

The thing we are struggling with at the moment is burn out. Either from full days at school or from training in London on a Saturday which is the most important thing to her at the moment as it's what she wants to do. We're finding that if she does a good week in school then the next week she's burnt out. And she seems to pick up heavy colds easily and that's her wiped out and unable to do anything because she's exhausted for up to two weeks. At her assessment they said her high levels of stress hormone are making her physically vulnerable and I'd like to know if there is anything that can help her regulate this stress hormone or calm it down once it's activated?

Thanks for any hints.

Donna

Hi, that's great to hear about your obsession with houses that you're using as a job now. Is it your main career or are you still partly involved in plant cellular science? I do have hopes that my daughter might use her creative writing to become a novelist someday as an additional thing to her physics career. Yes, I've been trying to teach her some survival skills for uni... she knows how to cook well and will be disciplined not to be staying up until 3 every night. But I am concerned that if things go downhill, there's no-one there to make sure that she doesn't stop eating or start self-harming again... any advice? Also, do you have any experience making friends at uni? I'm hoping she'll get to meet lots of people like her, but she's had so many issues trying to connect with people, it would be good to have some advice any one might have. I'm not sure how much to encourage her to mask... too much comes across as fake, but neither is it ideal to be offending people (completely unintentionally) five seconds into the conversation with no mask!!

Thanks again

Hi Catlover, thank you so much for sharing your experience, it is really encouraging to hear about your daughter. I definitely relate to pressure being an issue with Annie... it's so difficult with everything she's struggling with on the inside to have to cope with a full week of schoolwork and homework assignments pouring in! I'm glad your daughter managed to try a variety of things and found something that is sustainable for her mental health. You're right, I'm thinking at the moment that Annie just needs plenty of time and space to explore her options, without trying to make any definitive decisions / changes yet about homeschooling / leaving / changing school. Can I ask, how did things get better for your daughter? How exactly did you move through these issues you listed above? Are they mostly cleared up now?

Many thanks

The other thing I agree with is that she will find her own thing if given the freedom to. I'm actually a house obsessive! It was there from the beginning but never was given a thought by my parents as a viable option for a girl but times have changed. I made homes and maps of towns for all my toys. The first was for my big plastic aeroplane and I can't tell you the pleasure at 4 years old of making a cardboard box into a house with windows and doors with wallpaper inside using extremely blunt scissors and glue! It was only when I bought my first place that it took off again (after having terrible experiences with rent a rooms.) I could shut my door and be alone which I really like. Then I discovered I could visualise spaces and taught myself to do practical things that I get real pleasure from. I now refurb and rent property and can live off this without too much people input. I have had several office jobs and in spite of excelling at data analysis and computer programming, the people element has never ended well. I accept it's something I can't do and I'm happier not doing it. The other thing I'd suggest is maybe getting some life survival skills for university. I found that having the don't mess with me attitude gave me protection from being taken advantage of or bullied. It's a good shield. Also try to cap any meltdown until you get back to your room, then switch music on and go for it! If you have some life skills like cooking or repairing a puncture in your bike you have skills which make you valuable / more acceptable to people. You'll have someone who will always want food or their bike fixing! Cooking was a horrendous disaster in domestic science but once the thought that it was oxidation chemistry was dropped in my brain I could work out how to do it!

Hello, I’ve just seen your post. I have to say, it sounds remarkably like my own situation, or should I say, my daughters. Skipping school, issues at high school, eating problems, self harm, masking, shut downs, demand avoidant personality, psychotic episodes etc etc…  Thank goodness lockdown stopped her going to school and sitting her exams (which she done very well in). She went to Sixth form, ended up leaving several months later as it all got too much. She has ADHD and Dyspraxia as well as Autism, so staying focussed was a huge problem.
Then she got an apprenticeship. While she enjoyed the work, the 40 hour week was too much. Her mental health suffered and she had to quit. Then she got sacked from a new job. Now she’s at college, studying something more ‘hands on’, which is linked to one of her interests. It has more of an emphasis on coursework, rather than exams. The pressure has been greatly reduced. She’s at college 3 days a week.

All I’d say is give her time to explore her options. If she try’s different things, and decides it isn’t manageable, then she can change, no pressure. There’s too much of an emphasis children having to know exactly what they want at a young age. I don’t feel this is necessary. I feel they will gravitate towards what’s best for them with trial and error, and time. 
Have a chat with the support service at the school/college. Finds way that will help your daughter to achieve what she desires. Any small change they can incorporate to her day might have a big impact for her. Moving school can cause more stress.

I probably haven’t helped, but I just wanted to show you that things can, and do turn around for the better.

I actually studied plant cellular sciences so something completely different. I found it hard as I was with a group of people who I had no connection with. Most of my friends during that time was actually townspeople who I met at gigs! I did find a close friend from the uni who would be described now as ESN with a unique personality! I guess something like that didn't phase me. I structured myself so that I treated it like a job where they could have my time between 9-5 but the rest of the time was mine to indulge in my main interest.

Hi, thanks so much for your reply! It's so interesting to hear about your experience, especially how you use music as an escapism. May I ask what you studied at uni - did you study something to do with music, or is it just an aside interest? My daughter's main interests are sciencey, yet for the past couple of years, she has been completely absorbed in creative writing. I think she uses it as an escape, the same way you use music - she says she lives in her imaginary world most of the time, and writes passages in her head when she is at school. At the moment, she is just sitting up in her room all the time writing and talking to her imaginary friends in her story. As much as I'm happy she enjoys it, I can't help thinking she needs to engage more with the real world... is it healthy?? It's even more of a concern as all her imaginings are focused on how she hopes her life to be in Oxford, which has become a complete obsession...  I'm pleased she has regained hope that there is much to live for in the future, and at the very least, she is extremely excited by the prospect of being to hide in a library all day! Though of course, there is a high risk that her dreams will come crashing down in a couple of years, or even that it does not turn out to be as perfect as she imagines... any thoughts??

Best of luck for your journey to autism diagnosis, by the way!

Hi Carly. I'm finally being referred to adult autism services as a suspected high functioning autism. You daughter's experience is so so much like mine but I just didn't get any intervention at all. I basically shutdown for the whole of my school life and was regarded as being a bit backwards / non communicative / non participatory despite leaving my school with top grades. I was physically present but just not mentally there. My protective mechanism is music. I was very much into certain genres of music and would sit in the evenings basically playing my fave stuff over and over then taking into school and playing it in my head during the day. I'm not sure if your daughter has a fave thing but I'd say that's the best survival mechanism I had. I could just blot out the rest of my hideous time and stare out of the window. Things were better when I went to a further education college where there was a group of people who liked the same music from different courses that I could hang out with and discuss music. I was also fortunate that I had a chemistry teacher at A level who recognised my intelligence and being highly strung as they phrased it then. I went to Cambridge which I found very lonely but again my music got me through and connected with people who again shared my obsessive interest. I think therefore it's getting into whatever her obsessive interest is that provides some form of relief. It'll help but it wouldn't surprise me if she finds uni hard too. They other thing that I thought about is that I did a lot of cycling / running / dancing (by myself obvs) and I think that also helps de-stress and boost mood / switch off. I find it still helps take me down from feeling like I'm going for a Def Con 1 meltdown! 

No problem! Just realised that the link I sent doesn't include the specialist aspergers branch...

https://www.cambiangroup.com/specialist-education/our-schools/asperger-schools/southlands-school/

(There are also several other specialist aspergers schools as part of the cambian group on this website)

Best wishes

Thanks so much for giving me this info. It's really helpful.

Thanks a ton! xx

You're so welcome, it is a really difficult and isolating thing trying to deal with autism, as a young person and as a parent, but this site is such a blessing!

My sister works as an OT at a school in Lymington, Hampshire... not hours and hours away from London, but still quite a few miles.

It's called Hill House School - https://www.cambiangroup.com/specialist-education/our-schools/autism-schools/hill-house-school/

Best wishes

Hi Carly, it is nice to chat with a fellow parent sailing on the same boat.  As much as my son doesn't have friends, I also don't have parent friends who can understand what I'm going through. It makes me feel less lonely  to hear other parents' experiences. 

We live in Greater London. But we are ready to move if we find the right school. If you don't mind please can I ask what's the name of the school? 

Thanks xx

It's so disappointing about the lack of support groups, though I feel very lucky to have access to this online community (Annie even came on here and read a few forums so she knows she's not the only one struggling). That's really great your daughter gets so much support and understanding at uni. I'm still trying to organise allowances like extra time and a quiet room for Annie for A-levels.

Hi Nikki, sorry to hear about the struggles you've been having with your son.

My daughter found the transition from primary to secondary school very difficult as well, as the environments are a big change. She masks loads to cope with it all, but I'm sure this masking is the cause of the depression and meltdowns. She discussed not-masking with her psychologist, but the truth is the teachers and kids at school wouldn't accept or understand certain unusual behaviours (like stimming, walking out of class, not wanting to talk at all, being very honest, etc...) which would inevitably happen if she took off her mask. We watched a documentary about Limpsfield Grange (the UK's only all-girls autism school) and were both really moved by how quirky and non-judgemental the students and staff were. I really see the benefit in specialist schools, but I also completely get where you're coming from - as much as mental well-being is the most important thing, Annie would need something more than just doing drawing and petting animals.

It is interesting that you are considering a break from school for your son. At the moment, this seems to me the best option for Annie, and I believe the impact on education would not be so massive. Seeing my daughter study for her GCSEs in lockdown showed me not only that around 20% of the effort actually needed for school was focused on the academic curriculum, but that the work that could have taken a whole hour in class took a quarter of the time at home. You are fortunate that you still have plenty of time before having to deal with exams - work can be easily caught up and as for schools, the lower years of secondary are less academically focused anyway. My sister actually works in a specialist school for autism, and I know that several students have gone to Oxbridge from there. May I ask what area you're based in?

Good luck

Hi Carly

I can relate to what you are saying. My son is 12 years old and finding secondary school very difficult. He is bright, currently attending grammar school. He masks all day at school and is very well behaved but his behaviour is appalling at home.  We are now thinking if he needs to go to a special school given his meltdowns and rudeness at home.  Only problem is finding a place that will cater to highly intelligent Aspie kids and provide a suitable peer group.

The only solution to the meltdowns I feel is taking a break and taking it easy at the cost of education.  It would be a real shame to  miss out on education though, given the capability.  I really worry about how my son would finish his GCSEs and A levels even though he's intelligent. These kids have to go through a lot of sensory and emotional overload in having to adjust to the expectations of this world.

DO let me now how things go for your daughter.

Good luck