Autistic Shutdowns or Autistic Catatonia Treatments or Ideas

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I’m seeking any ideas regarding treatments, therapies, or medications that might help my fifteen-year-old. We are an Aspy family with three diagnosed Autistic members, a number of self diagnosed members, and a lot of us that ride the border while never fitting into the society around us. Mostly, we're pretty content with being outsiders and happy with our own thoughts, but this situation feels increasingly dangerous.

My daughter seems to be experiencing Autistic Shutdowns or Autistic Catatonia on a 48 to 60 day repeating schedule marked by:

a. Three to five days of fragility and anxiety as she senses the shutdown coming on

b. Two to five days of a pretty hard shutdown and what we describe as a reboot. See symptoms below.

c. Seven to nine days of brutal anxiety regarding how to make it back to school, explain herself to teachers, friends, cope with hostile students who she feels can spot her when she’s struggling, etc.


Shutdown or catatonia symptoms

Inability to speak
Inability to organize her thoughts
Can’t get dressed
No appetite or motivation to eat
Racing thoughts she can not control
Prefers to stay still and quiet with her head under blankets all day long
Can not stand to have people around
Sounds overwhelm her
Shutdown moving into meltdowns on occasion (anger, crying, dissociation)
Soothed by rewatching Parks and Rec - she knows every line to every episode in every season
Complete withdrawal from the world (deletes all social media, does not respond to any texts, emails, or phone calls, does not leave the house)
Poor word retrieval
Gives up on trying to communicate verbally
Sleeps up to 16 hours at a stretch
Obsessively replays her mistakes in her head
Feels like she’s in a dream or that the world is not real
Tunnel vision
Fuzzy hearing
Often triggered by stress, but also by making embarrassing social mistakes

This would also explain the cyclical nature of her breakdowns. She can only handle the overload to her senses and the hard work of trying to act normal in a highly judgmental school setting before she overloads and shuts down. 

My daughter was diagnosed with sensory processing disorder as a young child. Twelve years ago I think that was sometimes the diagnosis that girls with HF ASD were given. Even today, the fact that she is “well groomed” precludes a diagnosis for her with the local backwoods “psychologist” we’ve seen. Never mind that there are numerous findings that some girls on the spectrum take an unusual interest in grooming, make up, and other socially acceptable practices. Never mind that mirroring is huge for some girls on the spectrum. And it’s this kind of imitation that is exhausting and can lead to shut downs. 

She has often described the following:

1 Rehearsing conversations before she has them
2 Watching what the other girls do and say. 
3 She has had special interests her whole life - they just haven’t been time tables or trains but cameras and Photoshop, gardens, current events, tv shows (obsessively) etc. 
4 Sensory issues.
5 Hi IQ not always reflected in her school work due to anxiety
6 Escapism through repetition
7 Numbers help quell anxiety and she’s particularly gifted in math
8 Flat affect

My apologies if there is a thread for this, but the ones on Catatonia that I've found seem to be older and we're looking for anyone who has found clinicians grappling with this now.

Our hope it to find something here in the community, as we are done with psychiatrists or others who haven't read anything on autism in women or girls in the past three years. We've gone down their rabbit hole with discussion of bipolar type 2 and PMS. High dose Lamictal and birth control pills have had zero effect on this and our daughter has been clear that she feels like she has cycling anxiety not cycles of depression.

Many thanks to anyone that has an idea to share.

That sounds really really hard. I have very little of use to say and I am sure you will have more experienced posters soon. I just wanted to ask if you have tried an Occupational Therapist? My daughter (8 years old) has a bunch of sensory issues and to be honest most of them were not that apparent to me. She is a sensory seeker and by putting very small changes in place we can ensure she gets the necessary sensory feedback she craves to feel calm and secure and it is already making a huge difference.

My daughter is prone to burnout - she has had two serious burnout phases so far. She attends a mainstream school, has above average IQ and can pass as NT, the pay-off for her is that she spends all day in school masking and not getting the sensory stimulation she craves and over time that builds up and overwhelms her.

If your daughter is open to it and you haven't tried it perhaps look for an OT with specialised experience in this area. The OT would obviously need to be well skilled in working with children and young adults with ASD.

Question for you: Does the cycle persist through summers and other school breaks?

If she appears to be better during those periods, does her school allow for online classes or anything similar? O home school my son, but I don't knee-jerk recommend it b/c it is not feasible for a lot of people. The reason we do it is that the school could not/would not accommodate the stress reduction needed for us to succeed in a school environment. We had no issues getting a diagnosis; it was getting the things we needed in our very rural school district.

Speaking of rural locations: If your local area is not prepared to do a professional, serious, informed diagnosis for girls, you may need to travel somewhere with more resources. You want to make sure they are qualified to diagnose ASD in girls as part of your vetting process of them.

Thank you for the replies. We appreciate them. The cycles do persist through breaks, but we noticed that one last summer was as severe in the deepest phase of the shutdown, but that there wasn't as much time needed before re-entry into a public setting—maybe two days vs seven to nine days.

Her school has been amazingly helpful, especially as the diagnosis has shifted several times. Our old district was so rigid that our problems would have really been compounded. We moved from an area where there was a real war on from a superintendent to get rid of advanced classes that a lot of Aspy kids considered a refuge from bullying and having their differences constantly pointed out.

We're looking at travel options for diagnosis and treatment. I've been lucky enough to make money I'd happily light on fire if it helped get her safely through these cycles. They are beyond brutal and she's exhausted from them.

My wife and I both remembered that occupational therapy was a real help. Honestly, I wish our whole family had some experience with OT. That was our only treatment option when our daughter was little and we were told that this was Sensory Integration Disorder or SPD. I guess I need to learn what would be suggested for HF ASD girls in their teens. I could be BS'ing myself, but my tracking spreadsheet clearly shows a shorter delay from onset to onset this time (48 days rather than the 58 to 60 days) in the previous times. 46 to 48 days had been the cycle before she started running and it's the cycle we've returned to now in winter without running. When she was little her doctor recommended a lot of deep impact exercise, trampolining, etc. She would hang upside down, etc. Somewhere along the way the insurance ran out and we stopped pursuing OT. Thank you for the reminder.

Thinking about it my daughter also has a cycle. She always has her dip in early november and it last through to January. She has had that since she started school and I have associated it with a new teacher and going back to school after the summer. As she gets older I wouldn't be surprised if we notice more of a seasonal affection disorder pattern. This would hopefully be something the right OT would be able to tease out too. Perhaps sunshine and being outdoors is one reason your daughter found it easier to ease out of it in the summer?

Also, if running helps, perhaps invest in an exercise bike for indoors for the winter months. It must be Disconcerting as a parent when that cycle gets shorter. It does sound like you are doing an amazing job tracking all this though and supporting her and trying to stay one step ahead. It must be exhausting for you too.

What was interesting when working with the OT was how much movement can either over-stimulate or help restore calm and how much of a fine balance that was. Knowing how to insert extra movement to beat lethargy but also not create hyper- activity is key. I was thinking of getting a rebounder but the OT advised against it for my daughter as she feels it would just over stimulate her. The key, in light of my daughter's sensory issues, is to add little bits of movement during other activities. For example she now has a cushion she sits on that allows for some movement whilst she eats, it has changed our dinner habits totally. Instead of jumping up and down and not getting the peace to eat she sits through a whole meal and can concentrate on her food and chatting. It sounds so crazy, but this 10 pound cushion has made all the difference. Also, there is this thing called a body sock which is like a cocoon you can go into which is really calming for poeple who have sensory needs for pressure and being contained.

Have a look at sensory direct it is in the uk but it will give you a good idea of the range of products out there now. Without knowing exactly what she needs though it will be hard to get the right things in place. Perhaps if you have a help centre for autism locally you might ask them if they are aware of good occupational therapists locally.

Does she have any special interests or special passions that might help her reduce anxiety?