as small as a world and as large as alone, (1) I'm 14 and I think I might have Autistic...

2:25am September 20, 2014

Anonymous asked: (1) I'm 14 and I think I might have Autistic Catatonia. Ever since I was maybe nine or ten, I've been 'freezing'. I figured out a similar method of grounding myself that you described in one of your posts on FC. When I was younger it started with 'wiggle your toes' but now it's 'move your eyes'. More recently, I've been stuck stimming. I used to be completely verbal but now it's getting harder and harder to talk and to have my words mean what I want them to mean.

(2)There’s no longer a delay to some of my echolalia for the first time in my entire life. I’m scared. I’m so fucking scared. Maybe it’s just that I’ve been conditioned to think catatonia=terrible awful thing, but it seems like the end of the world. If everything goes right, I’ll be in college in a year, but I don’t know if I’ll be able to do that with catatonia. I guess what I’m asking is, could you give me a realistic hope because I’ve lost the false one and what’s left is despair.

I can’t tell you what your future will be like, either functionally or in terms of what part of society you’ll be living in. But I can tell you that there are lots of people with autistic catatonia who live on our own. Not live without help, but still don’t live in institutions.

Jim Sinclair, who is extremely famous in the autistic community for founding ANI and Autreat, has autistic catatonia.

I never really finished high school. I skipped to college, then went to special ed high school, then community college. But I never actually finished and got the curriculum and everything from either junior high, high school, or college. The only graduation I ever attended was special ed, and that’s because they’d graduate anyone who was leaving. So my education was extremely spotty, and university didn’t work out for me, and I probably shouldn’t have even been trying college but I did.

And anyway… then I moved out on my own and discovered exactly how few daily living skills I had left. If it weren’t for my cat and someone who helped me over the phone, I would’ve starved to death, and I still starved a lot, just not to death.

Anyway, I was able to get services. If you don’t have any sort of autism diagnosis now, you should try to get one (possibly with the new “catatonic features” qualifier if you can wangle that without the shrink going “oh no it’s not catatonia because you’re not a stereotype” or something) because having a childhood autism diagnosis will help you immensely if you need services as an adult. I got my first autism-related diagnosis at the age of 14 and that probably saved my life. Some places won’t accept adult diagnoses, or will only do so with a fight. Of course some places want you to have an IQ under 70, too, and there’s not much you can do about that in one of those places other than move, unless your IQ is actually under 70 (which I don’t know, because you can’t tell by looking — Donna Williams has written nine books and has an IQ of 67).

Anyway, I needed services really badly, and I got some help from the local Center for Independent Living and from my family, and I qualified for services. They tried to ignore us. Like they tried to pretend the deadline hadn’t gone by, and didn’t return our calls. Things like that are common tactics — they expect you won’t call back, and if you don’t call back they’ve saved money because you haven’t gone hunting for those services. But we got the local Protection and Advocacy to send them a letter demanding that they tell us whether I qualify or not, and suddenly they acted like all that never happened, “Oh yes you qualify,” etc.

So services have allowed me to live on my own outside an institution. I’ve had to fight to stay out of institutions (including group homes, ICF/MRs, nursing homes, etc.) over the years, for both autism-related and physical disability related reasons. But I am out. And I live my own life. It’s not the life I expected growing up: I don’t have a job, I need help with a lot of things that most people don’t.

However, I’m free. And I have been able to carve out a life for myself in freedom. And that means the world to me. Because when I was your age, I was certain I’d end up in an institution for the rest of my life. Because people told me one of two things:

1. You’ll get better and you’ll be living totally independently by your early twenties. Maybe you’ll be a little eccentric but you won’t be disabled.

2. You’ll stay the same or get worse and end up in an institution.

Both of which amounted to the same thing: ”Stay how you are, and you’ll end up in an institution.”

I didn’t know about the disability rights movement. I didn’t know about the self-advocacy movement and the parent-advocacy movement for people with developmental disabilities, both of which are responsible for the existence of services outside of institutions. I didn’t know I had choices. I didn’t even really know I was autistic, I thought I had some mysterious thing with no name. I heard the words “autism” and “developmental disability” and they went right over my head so I decided they were something between unimportant and scary, and clung to misdiagnoses that at least I could understand (like psychosis).

So I didn’t know any of that stuff. And autistic catatonia didn’t exist as a diagnosis back then. When I was 14, they diagnosed me with autism, and they mentioned catatonia at some point, but they didn’t put the two together, they saw catatonia as solely a form of psychotic behavior. (Even though catatonia is associated with many purely neurological conditions.) There were two papers out on autistic people who experienced catatonia, and both of them were single case studies and not very well done. It wasn’t until around 2000 that they were doing studies on entire groups of people with autistic catatonia, and it wasn’t named “autistic catatonia” until a few years after that when a medical journal did an entire issue on autistic catatonia.

As far as medications go, lorazepam has been known to help autistic catatonia, and I and several people I know have been helped by it a lot. There are also environmental modifications you can do, like moving to music with a very regular beat, which can help you move. Tony Attwood mentions autistic catatonia in his older book “Asperger Syndrome: A Guide for Parents and Professionals”, and I think it’s also mentioned in “A Complete Guide to Asperger Syndrome”. I don’t know why he was one of the earlier people discussing it at all, and I don’t totally trust him, but I’m sure he’s seen more than his fair share of patients with catatonia. (People with Asperger’s and PDDNOS can get it just about as easily as people diagnosed with just plain autism. The one factor that seems to stand out as a risk factor is having been socially passive in childhood.)

By socially passive, I mean Lorna Wing’s categories of social engagement in autistic people. There’s a lot wrong with those categories, not the least that an autistic person can be many of them at once. But I think the passive category truly shows tendencies that can later come out as catatonia, and that it seems more real as a category than some of them. It’s also the rarest of the social categories. But any kind of autistic person, from any category of autism that’s ever been devised, can get autistic catatonia. I know people with Asperger’s and no speech delay or speech impairments in childhood, who are now mute because of it.

Here’s a description of those categories in case it means anything to you:

3.2.1 The aloof group

This is the most common type of social impairment. Behavior may include:

Behaving as if other people do not exist;

Little or no eye contact made;

No response when spoken to;

Faces empty of expression except with extreme joy, anger or distress;

No response to cuddling;

If something is wanted, carers’ hands may be pulled towards the object;

May respond to rough and tumble play well, but when this stops return to aloof pattern;

Seem to ‘be in a world of their own’.

3.2.2 The passive group

Least common group, features include:

The child accepts social approaches;

May meet the gaze of others;

May become involved as a passive part of a game.

3.2.3 The active but odd group

Children of this group make active approaches to others but make that contact in strange ways, including:

Paying no attention to the other party;

Poor eye contact although sometimes may stare too long;

May hug or shake hands too hard.

3.2.4 The over-formal, stilted group

Seen in later life, this behavior is common in the most able person with autism. The following characteristics tend to be displayed:

Excessively polite and formal;

Have a good level of language;

Try very hard to stick to the rules of social interaction without really understanding them.

So basically aloof means you avoid social approaches and act like they don’t exist. Passive means you accept social approaches but don’t initiate them. Active but odd means you make strange, one-sided social approaches that strike people as unusual or eccentric at best (think Luna Lovegood in Harry Potter, kind of). And formal means that you do make approaches but you communicate in an extremely formal manner even in casual conversation (think Ernie MacMillan in Harry Potter).

I’ve had elements of all four, and most autistic people do. I was aloof around other children in early childhood, and in late childhood I learned to sometimes make active-but-odd approaches. But overall, throughout my life, I’ve been unable to make social approaches easily yet if someone else initiates them I can usually participate. That distinction — can’t do it without an external prompt, can do it with a prompt — is exactly the distinction that is often found in movement, memory, and thinking in people with autistic catatonia. So it’s no wonder passivity is related.

Anyway, so when I was your age nobody even knew what autistic catatonia was. It took me six years after my initial autism diagnosis (which occurred at your age) before my doctor saw Lorna Wing and Amitta Shah’s paper “Catatonia in Autistic Spectrum Disorders” and diagnosed me the moment it was faxed to him, because I had had all of the features pretty much as long as he’d known me. And he’d known me a long time by then. That paper is still the best overview of autistic catatonia, especially because unlike some of the bullshit Dirk Dhossche put together, it doesn’t advocate electroshock therapy (the kind where they zap your brain) as a treatment.

Dirk Dhossche wants electroshock (ECT) to make a comeback. So he studies anything that he thinks will help him do so. Which in practice means severe catatonia and severe depression. He’s also an asshole, don’t ever try and talk to him. Donna Williams and I got treated very rudely by him when we objected to the ECT thing. He told us that we just didn’t understand severe catatonia, even though Donna used to not move for months on end and was cared for by her family because she just went completely still at one point in her adolescence. But Dhossche was having none of that, he just acted like we didn’t understand.

If you consider ECT, understand that it’s a crapshoot whether it will work (it usually doesn’t, it’s basically like whacking your head with a sledgehammer and hoping it’ll reset something rather than leave you with brain damage), it’s usually reserved for the most severe cases, and everyone I know with autistic catatonia who has had ECT came out the worse for it. Like one woman who lost all of her memories and had to relearn everything including how to talk. She almost died when the ECT sent her into status epilepticus. (If you’re epileptic, don’t go anywhere near ECT.) She’d had milder epilepsy beforehand but now her epilepsy is extremely severe. Another person I know with autistic catatonia who was on ECT for awhile, said that waking up from it was the most painful thing she’d ever experienced. And it didn’t help the catatonia or anything else she had either.

Anyway. So. At your age I had nothing on autistic catatonia. And yet somehow by my twenties, I was living on my own. Not because I had the capacity to take care of myself. But because there was this third option besides “get better and never need an institution” and “get worse and need an institution”. The third option was “get worse and get services that allow you to remain in your own home”. You should start planning for those services now, and one important thing in many places is a pre-age-18 autism diagnosis, so if you can get one, good, and if you can get one with the catatonic features qualifier attached, even better. If you already have one, very good. (But if it’s Asperger or PDDNOS you might want to get a newer one where it’s all Autism Spectrum Disorder, because some places will deny services for people with Asperger’s, PDDNOS, or atypical autism, and only take people with an autistic disorder diagnosis. These days there is only one autism diagnosis: autism spectrum disorder — and having that diagnosis may help you if you already only had a PDDNOS or AS dx.)

And if those services don’t exist in your state/province/country, or don’t exist for people meeting your description, you might want to join with advocates, I guarantee they exist somewhere, who are working to help create a world where nobody has to live in an institution of any kind. The developmental disability self-advocacy community does a lot of that work, and I think the Autistic Self-Advocacy Network may be involved in some of that, although I don’t know how directly. (And whether it’s actually them going in and trying to convince the state to provide better services, or whether it’s just PSAs and the like. I just don’t know.) Being involved in that advocacy work means two things: One, you might change your area’s policy on the matter. Two, you’re likely to be hooked up with people who can help you advocate for services if and when you need them. Because self-advocates and parent-advocates tend to know the system inside and out.

Anyway, you should be planning for that possible future now. It’s possible you can live on your own without all that support, or that you could live with family or friends or someone willing to provide that support outside the system. Those are all things that people I know with autistic catatonia have done. But if you do need the services, you’ll be glad to have planned. Having all the right paperwork showing that you’ve had all the symptoms and functional limitations and stuff, goes a long way to getting services. (And things that are a nuisance at 14 can be life-threatening as an adult. As a child I was very disorganized, and that didn’t seem like it would be a huge disability as an adult, but it was, because my inability to clean my desk at school was tied to my inability to clean my house and avoid living in total filth, and my inability to be organized enough to even get food and eat it.)

You have a huge head start on me and a lot of people who weren’t diagnosed with autistic catatonia until adulthood, and that’s why planning now for the worst-case scenario is important. You might also want to be planning for communication devices and the like, for times when you are unable to speak. There’s also software for things like computers, tablets, iPads, iPhones, Android, and the like that you can get. Often under “text to speech” or similar things, also sometimes under “autism”.

Also something has happened to me that I did not expect. I acquired a severe case of secondary adrenal insufficiency. This means that my pituitary gland (near the brain) doesn’t produce ACTH, which tells the adrenal glands to make cortisol. And my adrenal glands don’t make enough cortisol even when stimulated by flooding my entire system with ACTH. This is a dangerous and life-threatening condition, and I will have to take steroids the rest of my life.

But.

Ever since I got it, I’ve frozen less often and had fewer periods of moving really slowly. I still have trouble speaking, I still have serious trouble initiating movement, but I’m much better than I was. And it seems to have coincided with a huge drop in my cortisol levels. I don’t know what that means, in terms of anything, but I thought I’d tell you that weirdly enough a chronic illness can sometimes make autistic catatonia better, at least for awhile.

(And I wonder… cortisol is a stress hormone. Lorazepam treats stress, among other things. And stress is a known factor in the development of autistic catatonia. So I do wonder if there’s a connection between severity of stress and severity of symptoms of autistic catatonia.)

Anyway I’m rambling. I don’t know if I’ve given you enough hope. But when I was your age, hope would’ve consisted of “It’s still possible for you to become severely disabled and live your own life, as you want it lived, outside of an institution or group home.” Which doesn’t mean you’ll necessarily get that, or that you won’t get stuck in an institution (I’ve done about 1.5 years of time in inpatient mental institutions of various sorts, spread out over 4 years, and that doesn’t count what I call “community institutionalization” where you’re under institutional power structures but technically live in the community) but at least there’s hope that you can. Because I exist, and Jim Sinclair exists, and Donna Williams exists, and so do lots of other people living our lives in our own homes despite severe disability brought on by autistic catatonia.

Also… 1/3 to 1/6 of autistic people, from the research I’ve done, lose skills in adolescence. Of the 1/3 number, ½ of autistic people gain those skills back after adolescence. So it’s possible that’s what you’re experiencing, too, and that you might regain some of these skills after your hormones quiet down and your brain matures. Adolescence, brain-wise, ends in your mid-twenties. I didn’t regain any skills at that point, but emotionally I became very stable compared to before.

I hope any of this information has been helpful. I know how scary it is to be 14 and facing a very unknown future with autistic catatonia — and in my case (not sure about yours) everyone either had a totally bleak prognosis for me or was in denial about how bad it was and that it was only getting worse. And for me, knowing that there were other options besides institutions and getting better, would have helped me a lot and even probably saved me a few suicide attempts. (Something I don’t recommend as a way out, at all.)

If anyone else has any words of advice, they’d be welcome in reblogs and responses to this post.

TL;DR: Even if you end up with serious functional limitations as an adult, it’s still possible for you to live outside an institution and control your life. It can be hard to get those services in some places, but they do exist. And the earlier you plan for it, the more prepared you’ll be. tI’s even possible that if you’re in the system already, they can do a “transition plan” that involves getting you services as an adult when you leave high school. But I don’t know what if any DD or IEP services you’re getting already.