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ECT and Autistic Spectrum Disorder


Emettman

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Hello all: I'm new here, having been recommended to give you lot a visit.

I have long-term depression, currently quite severe, and have tried almost all the medications under the sun in the last 20 years.

I was diagnosed with Asperger's five years ago at age 48.

My new psychiatrist is strongly suggesting ECT.

I'm reluctant because of the mix of reports, and because cognitive function and memory are the only bits of me that I really feel good about.

I haven't found much about ECT in people with ASD: any sources, ideas, suggestions?

Or therapies I can stand between me and ECT, which I currently regard as a last resort

But I am weary enough of this quarter-century fight that I may be in the "last resort" phase.

No panic. I can keep going as long as I want to: I'm just not at all sure why I want to.

(something similar will go in the Autism section, as this is a bit of a crossover)

Chris.

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Have you found a therapist yet who specializes in ASDs in adults? *Part* of the depression is likely due to some of the difficulties associated with that. There are skills you can learn to help you deal with difficulties and issues you have and also depending on where you live there may be an aspie association in your area which may be a good thing for you to join up with.

ETA: I just saw you live in the UK so it might be a bit difficult to find a specialist. But looking into finding an aspie group might be a good idea. I can help you look about if you like. I know that's a bit of a tangent and not the central issue of your post, though, so pm me if you're interested. sorry to deviate from what you're asking.

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Can you summarize the medications and therapies you've already tried, so we don't suggest things already done?

We are talking 25+ years, here.

SSRI's: various. MAOI's , Tricyclics, Venlafaxine, Lithium (though I have never had bipolar symptoms: strictly low mood only) Epilim.

Currently trying Cipralex.

Several different takes on CBT and counselling, almost two years of group therapy... and a substantial course on positive thinking and self-esteem (I was on the "try anything" strategy at this point. Acupuncture and Chinese medicine.

The most useful therapist was someone from the "Human Givens" movement, who at least spotted that his approach wasn't hitting the spot, and was the first to raise the suggested possibility of an Autistic Spectrum Disorder.

I've tried being socially active and being withdrawn... making an effort and just relaxing and "doing what comes naturally".

Not sure what other moves are on the board, as it were, though it would not surprise me if I've missed something obvious on the "blind spot" principle.

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Have you found a therapist yet who specializes in ASDs in adults?

Rare as hen's teeth round here! I have joinied the National Autistic Society, but the nearest local group is over an hour's drive away and they are set up almost exclusively to help autistic/AS children and their families.

Were I in, could Iget myself in, better shape I could easily have a positive role there, helping explain parents' language and thinking to AS children and vice-versa.

This is stuff I've had to work out for myself, the hard way.

This relates to the rest of your post, and you are quite right: getting the diagnosis and reading round on the subject has given me new insights, and some new tools for coping, but that hasn't been anything like a total solution.

*Part* of the depression is likely due to some of the difficulties associated with that. There are skills you can learn to help you deal with difficulties and issues you have and also depending on where you live there may be an aspie association in your area which may be a good thing for you to join up with.

ETA: I just saw you live in the UK so it might be a bit difficult to find a specialist. But looking into finding an aspie group might be a good idea. I can help you look about if you like. I know that's a bit of a tangent and not the central issue of your post, though, so pm me if you're interested. sorry to deviate from what you're asking.

No, nothing local, that I've found so far... not by the suggestion of the NAS or the local Citizen's Advice Centre listings, or to the knowledge of my psychiatric nurse.

(but then we're rural here, by UK standards: 20 miles from a cinema)

But yes, some support, activity or purpose (that didn't seem futile, or stress me out) would be positive.

I'm being vetted to try to do some voluntary work again. Use the bits of me that are in good order!

Now, If you know of a millionaire in Cornwall who wants an extensive garden model railway built for his Aspergic son...

(this is pretty much on a par with the more conventional "rich widow who owns a pub.")

Thank you. Chris.

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Were I in, could Iget myself in, better shape I could easily have a positive role there, helping explain parents' language and thinking to AS children and vice-versa.

This would be so nice to have. Really. Has anyone thought of this and done it yet, anywhere?

It's cropped up a few times for me informally, which is why it was in my mind, that and contemplating the "other world" "other language" aspects of ASD where the the idea of a "local guide" or "translator" might have some mileage.

I certainly don't know locally of any schemes making use of the experiences and developed coping strategies of adult AS folk.

"Well start one, then!" would be the line if I had more confidence and drive. Not quite at the moment.

Now, If you know of a millionaire in Cornwall who wants an extensive garden model railway built for his Aspergic son...

Oh, if only I were a millionaire, I'd import you to do just that (I have a Train Kid)...

Ah, this going off-topic, but never mind. (or we can move this bit somewhere more appropriate)

Train advice and chat is available for free.

My trains and the inspiration for some of them can be found on my photo pages at:

http://www.picturetrail.com/emettplus

(explains, too, why I am Emettman)

And

http://s644.photobucket.com/albums/uu170/Emettman/Garden%20file/

On carving a railway from a garden wilderness, and other train bits and pieces.

ECT is truly a last resort sort of thing, but it does work for enough people, and quickly, that it still remains an option. I don't know, if you've been suffering for a long time, it seems worth a shot as long as you can cope with the memory loss that's almost guaranteed.

That's basically where I'm at but, as I said, "...cognitive function and memory are the only bits of me that I really feel good about"

Which is why ECT *is* ranked as a last resort at the moment.

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I love G-scale outdoor model railroads. My son has a Thing for the UP Big Boy. For about, oh, a year or more we watched videos about the Big Boy over and over and over and over and over... smile.gif

A g-scale Big Boy is just monstrous (size and cost!) and an appropriate train, impossible!

I refer you to the Green Bay National Railway Museum's "Big Boy" mug

https://app.etapestry.com/cart/NationalRailroadMuseum/default/category.php?ref=1287.0.133297213

It is a BIG mug. I got one when I visited there from the UK, a bit over two years ago, while I was touring Wisconsin.

I feel like the cognitive function thing is overstated a little bit-- depression itself is probably going to knock your cognitive function more than ECT will.

From what I understand, it's not that ECT will nuke your capacity to retain or form new memories, just that it has the chance to cause significant amnesia, and not necessarily in a predictable pattern. Some people report losing memory of certain events or periods of their lives. But I don't think it's going to make your memory worse from here on out.

Still, they are significant effects.

Part of the hell of it is that I appear to have superb cognition...

My best psychiatrist: "If you weren't so intelligent and observant, I could lie to you much more effectively."

It looks like the ECT will have to be the last resort, but I'm not that far from calling on it, currently.

I'm waiting for suggestions that may flow from a couple of recent interviews with a care worker and a psychiatric nurse: they are "thinking."

Neither are personally keen on ECT (unofficially: officially "it's not their place to comment")

Chris.

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Hi. Your med list doesn't include Lamictal or the AD-like antipsychotics. Pairing and cocktails can be a factor, but wow, listing could get unweildy. Anyway, still some wiggle room.

I love your trains and the pics. Feel free to start a thread. I'd split the comments out of here but they are pretty wrapped in.

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I have done lamotrigine (lamactil), and had cocktails as well: it's difficult to remember them all over 20+ years.

But I had until a couple of years ago gone 3 years without any meds and, while not good, I was no worse than being on them, and being free of side effects was a plus.

"Coping" is an interesting word with very flexible meaning.

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I saw my psychiatrist today, and he is referring me on to talk to the consultant in charge of the local ECT suite.

I can find no reason or reports that suggest having an autistic spectrum disorder is an extra problem.

(apart from not having friends who can look after me during the treatment!)

My psychiatrist's main reluctance is that he accepts I see this as something of a "last ditch" therapy, and if it fails fears I will take that as a "green light" for suicide.

I'm not sure I disagree with him. And he admits he doesn't have anything else obvious to offer.

I am weary with holding things together, for little felt return.

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And none of the antidepressants worked at all--or were the side effects too bad? (SSRIs and many others may take up to two months to "kick in." Did you give them a sufficient trial? Probably. Sorry, I'm just thinking out loud.)

I'd try a few more of the antipsychotics with antidepressant effects, and then I'd try to ECT.

I've never had ECT myself, but I've talked to a number of people who have, mostly for depression. (I met one person who had it for anxiety with some psychosis, along with an eating disorder. It did not work for her. I'm not sure exactly why ECT was tried with her in the first place. She hadn't tried that many meds...) ECT often works, and it tends to start working faster than meds, which is good. I met one person for whom ECT seemed like a bad thing. She had slight dementia in addition to depression. After a few ECT treatments, her depression hadn't changed, but the dementia was getting worse, and ECT was stopped. (She couldn't remember the words for common objects.)

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And none of the antidepressants worked at all--or were the side effects too bad?

Apart from a positive blip when I first tried SSRI's a quarter century ago, (and then there was the relief effect of finally admitting I needed help and "getting" it.) side effects have always outweighed felt benefits.

I'd try a few more of the antipsychotics with antidepressant effects, and then I'd try to ECT.

My latest psychiatrist took a review of my medication history, and my talk therapy history, and put ECT as the "likely best move" but agreed that the "is there anything else?" approach was not unreasonable, given the unknowns and its relative irreversibility compared to medication.

HAving done more research I'm less averse than I was.

Despite my talk-therapy history, I suspect there may be something in world-view, philosophy... some way of positively looking at, and enjoying, the world that I haven't found.

(but the suspicion remains that my view point is not an illness, nor inaccurate, though I don't actually have any Scottish blood:

http://blogs.warwick.ac.uk/jhumfrey/entry/depressed_man_diagnosed )

That or a little red-headed nurse to give my life meaning.

(this a very long-running joke )

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