Saturday, April 27, 2013

Adult Autism, Avoidance and Depression

In my work with adults on the spectrum I help adult clients take a look at a big theme: avoidance.

Avoidance is a theme, but not a constant pattern.  I've worked with many clients who, once they're interested in a task or problem, are the hardest workers I've ever known.

Yet these same clients may struggle with avoidance when it comes to everything from personal hygiene to buying Christmas presents.  It's puzzling to those around them, and even more puzzling to themselves.  Why can other people seem to "get it together" and "buckle down"?  Even clients who are functioning well are plagued by avoidance that causes anxiety and schedule disruption: a three-week project is avoided until the night before, then powered through at the last minute.  It's not as though the three weeks of avoidance were spent in blissful denial; rather, most clients describe an anxious, mental circling feeling that leaves them feeling dread.  So why not just approach the task earlier? Most determine that it must be a character failing.  What other reason could there be?

This avoidance may be depression in disguise.  Together, clients and I have come to understand that the autistic experience of depression often involves something other than the standard sadness we all associate with depression.  The autistic version of depression is dominated by apathy, and a pretty profound inertia that can make it hard to approach tasks or even move physically.  With our newer understanding of how depression's lowered dopamine levels impact motivation and drive, not just mood, (see http://www.sciencedaily.com/), this does make sense.  Still, recognizing depression when it doesn't necessarily involve a subjective sense of sadness, can be tricky. And that means that typical treatments that address sadness can be not only ineffective, but irrelevant.

More effective, you might think, is addressing the behavioral side of therapy.  The behaviors of getting up, showering, getting some exercise, etc, etc, etc.  Surely focusing a bit on these aspects of healthy functioning is not irrelevant, but it's no fix, either.  For clients on the spectrum, work is to be done for a purpose.  A demand for purposeless work, or what feels like purposeless work, can actually exacerbate avoidance symptoms.

In my experience, clients on the spectrum who are dealing with avoidance as a powerful symptom of depression, are dealing with a symptom whose roots are in feelings of meaninglessness.  Folks on the spectrum often find meaning through curiosity - once that door is closed, it's difficult to manage mood and motivation.  In fact, it may be that the "special interest" phenomenon we see with autistic adults is the just the behavioral manifestation of the mood-altering function of learning.  So treatment - at least short-term treatment - for depressive symptoms often involves learning of some sort.

If you have a loved one on the spectrum who is struggling with avoidance as a symptom of depression, it may help to know that many clients describe feeling confused and helpless as to why the problem of avoidance persists. While avoidance may at times look oppositional ("Why can't he just remember to take out the bins on Thursday? Why is it always my job?"), I rarely have found this to be the case.

Identifying the mood components of the behavior is crucial to understanding why the problem exists and how to begin solving for it.  As we all know, nagging, reminding, lists, threats and even real-world consequences often are of no help.

As I work with more and more adults on the spectrum over time, it seems to me that it is crucial that mood is carefully assessed.  This can be tricky - if the autistic adult cannot self-report sadness (either because it is not felt or not identified), and if many of the behavioral markers of depression are missing (no tearfulness, suicidality, missed work, diet changes, etc), depression can be, and is often, missed.  If it is, the behaviors that keep depressive symptoms at bay will be intractable, and psychotherapy will devolve into going in circles.  This can be especially demoralizing for couples.

If you or a loved one is looking for help, working with a clinician experienced in autism in adults is crucial, so that symptoms that present much differently in the autistic individual can be identified and treated.  And above all, so the autistic individual can have the experience of being seen.

60 comments:

Anonymous said...

This is another good posting. Thnks. Now if you can help me actually get my hb to remember the trash that will be great! thanks for helping me see it as depression because it feels like he just does not care.

Anonymous said...

My avoidance comes only sometimes. More than avoidance I am in overdrive and cannot stop even when i am exhausted. can you write about that if you see it in your patients. i do have a friend who does avoid and he cannot make himself move when he is down.

Anonymous said...

I like this idea because it is impossible to explain to others why you are not willing to do simple things, but you will work your ass off at work all day doing the job of four people. I don't get it myself. Thank you for another helpful article.

Anonymous said...

avoidance is the worst feeling if you have ever encountered it = all the stress and none of the reults

Loco Geologo said...

Another good post and how we are all wonderfully different; even in the way we show depression.

Gordon said...

I wish this were easier to handle. The avoidance I deal with has gotten my car towed, my septic ruined, the IRS unhappy with me and my wife going crazy. At work I am nonstop. At home I am too wiped to do anything but sit. I want to change it but how?

Nix said...

HEAR HEAR. I'm plagued by this, even though I am completely unaffected by depression and have very little to be depressed about. I just avoided something at work for a week and a half, prevaricating madly and doing lots of other things to avoid it, then blew through it in a day once I got my motivation together... and this was something I expected would be fun! I don't understand my motivational systems at all sometimes :(

I understand neurotypicals can motivate themselves to do something consciously, or choose to pay attention to something consciously. I have no idea how, and the very idea of either of these seems like a contradiction in terms. How can you consciously *decide* to pay attention to something without paying attention to it first? How can you decide to get motivated about something without already being motivated?

ElectricRonin said...

I generally avoid interaction out of fear of past experiences. When my mood is a little down, it can be a lot worse. I want to just be myself, but I've had more bad experiences than good ones. Its hard to make myself understood when no one understands(even me) asperger's and I find it difficult to articulate what's going on. I was diagnosed just a few years ago, when I was 29, and I've not been able to see anyone that could really help me. I had found my way into heroin addiction and subsequently into recovery and its hard because in recover u have to interact and empathize with other people which one i can do sometimes and the other, never.

Greb said...

I copypaste from a forum thread were this article is being debated:


"I'm right now using Lexapro (an SSRI antidepressant). I have been using it for about six months. I was trying to put my life in order and it has helped me in such a way that I still can't believe it.

I have to admit it: I have been chronically depressed for years.

Why didn't I take an antidepressant before? Well, I never really thought I could be depressed. Indeed, I could be even the funniest guy in the party.

My best friend told me many times "everytime I ask you how you feel, you tell me 'I feel like sh**', but you always look the happiest one". But I have been feeling blocked, jammed, unmotivated, unable to go ahead with so many things I wanted to do. Of course, there was psychological barriers too, but the depression was the main problem. A depression I couldn't detect because I didn't feel depressed. I felt stupid, useless, exhausted, but not depressed. When I tried to explain it, I was told 'lack of self-esteem' when I don't have any lack of self-esteem, quite the opposite.

Indeed, only three days ago, before seeing your thread or reading the blog article, I was mailing to a friend and I wrote this: "But it looks like depression doesn't affect me as it does to other people. Someway I separate emotions and thoughts in different folders (probably due to the Asperger), I watch my own emotions as somebody watching through a microscope. Indeed, I usually can't understand the way people mix emotions and behaviour, people are often illogical from my point of view (anyway, coexisting is about accepting people -and loving them- no matter how illogical they are for you)." "

Anonymous said...

You should write a book. These are great.

Anonymous said...

I think you should write a book as well. I haven't found many writings about asperger's where the neurotypical author actually seems to understand what the person with AS is feeling, or if they do understand, they're usually not very good at explaining it in a way that makes the AS person feel adequately represented. Thank you.

I'd like to see an article on the "burn-out" caused by trying to keep up/fit in with neurotypicals for prolonged periods of time. maybe you've seen clients who used to be "passable" and then just break down after a while? see http://archive.autistics.org/library/more-autistic.html

I am not diagnosed. I'd say I did ok in high school and I moved out at 17 but at about 20, so many things had built up I had to move back home and found myself entirely apathetic to life. i avoided getting a job for over a year. and i lost it after about 6 months. i dont have a good job history. but i still ate regularly, played video games, even tried to help around the house, but i stopped talking to everyone i knew. it was painful but i didn't know how else to cope. some people actually thought i had committed suicide because i dropped off the face of the planet so suddenly. I'm 22 now and I still have no friends and I can barely drag myself to do things i need to do. Like bathing unless i have to go somewhere. i stopped shopping for my own food, and my diet has deteriorated. i stopped exercise and now i am often weak and tired. i just want to get back to where i was, i used to think i was happy. at least i didn't feel so bad. now im just here and i dont feel anything really. i wish i was closer to you so i could talk to someone. im a girl and most asperger's "specialists" around me are used to male clients.

Cary Terra, M.A., LMFT said...

Anonymous,

I have indeed seen so many clients in the situation you find yourself in. Sometimes it happens when the leave for college. Then, in their early twenties, they find themselves back at home "in the basement", gaming, jobless and extremely isolated. I will indeed write an article about this. And someday I hope to get to the book!!!!

I'm sorry you're going through this - I have seen first hand how hard it is, how empty my clients feel.

Anonymous said...

I cannot make myself get up in the morning and I am very often late to work for no good reason. Same thing is happening every damn day. Cannot figure out what the point is. Must know point before taking action. Therefore stay in bed until panic gets me. Gene

PS Write a book I agree.

Anonymous said...

avoidance is like death. you cant move but your survival can depend on it. if my survival depends on it i actually can get going but it has to get to that extent and then i have fires to put out. please do write a book. there is a lot out there but you seem to have some realy unusual insight

johnathan f.

Anonymous said...

Oh no, I think I can safely say I am very depressed. Never saw it as I bottle my sadness. It is there rattling in the dark. Thank you for the informative post.

Anonymous said...

Thank you for this post. It is scary that my psychiatrist has not explained this to me. Maybe he doesn't know. I have been struggling with this since I was a young child.

Anonymous said...

Thank you! I am a life-long avoider, and I always thought that it was a tragic side effect of Aspergers You've given me a greater understanding of myself, and now that I can put a name on my behaviors, I feel a sense of relief.

Anonymous said...

Great insights, thanks for writing and posting.
I wanted to comment earlier...but I was procrastinating. :O

Anonymous said...

Hi, thank you for this article, it helps a little.

Last week I was released from a psychiatric ward in London, UK, where I had been detained for four weeks because of attempted suicide. Three psychiatrists got involved to put together a picture of recurring moderate to severe clinical depression; high suicidal risk; Asperger's; and, as contributing factors to depression: tinnitus/hyperacusis, social isolation, failing relationships, failing family circle, and unmanageable work pressures.

The first two were news to me. In my perception suicide was a happy decision, not a sad, depressive episode. The psychiatrist in response proposed the phrase "smiling depression" --that's me.

Asperger's had never been suggested before. Now that's been thrown at me at age 52, what do I do with it?

All the other bits, tinnitus etc., to me were facts of life and ageing, which I summarized into "more effort, less benefit" -one formulation of the decision to end my life.

The "avoidance" topic in the article rings a loud bell in my mind.

I work in a high-skill semi- managerial position in a large organization; my line manager praises a "huge professional reputation" and I get high promotion scores year on year; rewards are good; I have had a fairly successful track record over 27 years of gradually increasing responsibilities, accomplished mostly as a well- regarded team worker... who would always find ways to work on my own, because of the specialist knowledge involved in the work, and also the large experiential content (i.e. difficult to pool).

Over the last year or two I began to lose my footing, unable to cope with change, such as additional information, changing regulatory framework, new work relationships, interpersonal conflicts aka office politics, and a new requirement to take on more social obligations (as in receptions, dinners, parties); I started having memory problems, and difficulty acquiring new information; above all I was terrified at having to deliver on my core skill of handling large complex tasks, on which my reputation is built, putting off the work to an indeterminate future. For a while I compensated by working long hours into the night, subsequently also coming to the office at the weekends and delivering uninterrupted work for long periods of time, with good results.

When that hit a wall of exhaustion, I started missing deadlines regularly, but became apt at negotiating deferred deadlines. Deferrals do imply delivery at some point though, but now just getting started was difficult. Merely reviewing the brief --or opening an email from a particular sender-- would set off panic.

Supportive management then gave me extra staff, which I had not asked for, and with them the task of coordinating work within the newly formed team --I felt utterly out of my depth in that role. That's when getting to work on Monday mornings became difficult. Until not showing up on a Monday slipped into a Tuesday, and that's when it all headed for a cliff / detention / hospital / limbo.

Now that the psychiatrists have spoken, I kind of know where I stand, but it's still nowhere to be.

In people's mind, I have had a depression, I have been suicidal, I have had medical help, it's all sorted, when am I back at work? But in effect, nothing today is essentially different to how the world look, and me in it, 6 weeks ago, except that a diagnosis exists, which in a way makes the walls that much taller: if that's the notional wheelchair I am in, how am I supposed to get up and race? And so the option taken at the beginning of this loop, remains attractive and valid.

Anonymous said...

This is me. Actually I don't know what I am feeling, I just know whether I can work or not. If I am ok, I am working. I never thought to link apathy with depression but I can see this is right. I will not let the emotions in, so this activity evidence is what is left. You should do a book. Thank you for the blog.

Anonymous said...

I too feel, that I am reading about myself. I have linked apathy to depression, but haven´t been able to pin point it as actual depression. I thought it was due to emotional damage from far too many downs, - and maybe a character flaw.
Thank you.

Fat Hamster said...

No-oo-oo, please no. Executive dysfunction is not depression. Executive dysfunction can lead to depression, and can be exacerbated by it, but it's not the same thing and demands a different response. Many autistics experience executive dysfunction issues even when we are not depressed at all. The distinction is really important, because too often people think we will be cured of our functioning difficulties if we can only get a handle on our 'mental health problem'. We may need treatment for depression, but we need ongoing support and accommodations for our executive functioning issues.

Cary Terra, M.A., LMFT said...

Remember, though, avoidance is different than procrastination. Lack of executive functioning is not involved in the ability to, for example, do basic hygiene. It's this avoidance I address here. Executive functioning, when it is lacking, can look like disorganization and difficulty prioritizing. Avoidance as a manifestation of depression is a more serious situation that can impact individuals in ways accommodations cannot address.

Anonymous said...

Thanks for this. I know what I am dealing with is executive dysfunction but then there are times I am so avoidant and do not understand why. This is why. I don't feel sad I just feel flat. Thanks for writing this.

Fat Hamster said...

Cary, impaired executive function absolutely is involved in the ability to do basic hygiene!

There's a whole lot more to executive dysfunction than just "disorganization and difficulty prioritizing" - it covers problems with a whole bunch of things including forward planning, task sequencing, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, initiating and monitoring action, and task switching.

That gap many of us experience between wanting to initiate an action (to take a shower, send a text, get a meal, put the garbage out or whatever) isn't the result of procrastination, laziness, lack of motivation, or any kind of curable mental block - it's the result of a fundamental part of our autistic neurology.

Impaired executive function is a major part of autism (as well as being associated with ADHD, OCD, schizophrenia, Tourette's syndrome, substance misuse, and anti-social behaviour and, yes, depression.) Of course autistic people's executive functioning issues get compounded by depression - and I'm not suggesting that none of your autistic clients are depressed - but knowing that we experience problems with executive functioning even when we aren't depressed is *crucial* to understanding the autistic experience.

(Reference for some of the above: Chan et al., 'Assessment of executive functions: Review of instruments and identification of critical issues'
Arch Clin Neuropsychol (2008) 23 (2): 201-216. Other parts are from a presentation on advocacy I delivered to the UK's National Autistic Society in 2011 which is online under my real name, Selina Postgate.)

Cary Terra, M.A., LMFT said...

Hi,

I do disagree with you. I have not seen these difficulties - and again, I differentiate between "procrastination" and avoidance - resolve with accommodations. That gap you mention between thought and initiation of action has been linked to low levels of dopamine - the "motivation transmitter" - and depression. We can debate theory - but what I see clinically is that, once anxiety and depression are at least partially resolved - this gap narrows. I think maybe there is so much overlap between ED and depression symptoms that to try to disentangle the two is difficult, especially with autistic clients. Though I agree with you that it's important to note the presence and impact of ED, and not rush to attribute these symptoms to depression, profound avoidance is simply not a result of ED. The question for me is - what works? Treating depression, in my clinical experience, often works.

Fat Hamster said...

Cary, you said, "Avoidance as a manifestation of depression is a more serious situation that can impact individuals in ways accommodations cannot address."

Yes. I would not disagree with that. The problem I have with the way your blog is written is that you appear to be telling autistic people that all their problems with executive functioning are down to depression. And that's just not true.

I write from personal experience as someone who was only diagnosed autistic in my early fifties - so I spent decades of my life trying to resolve what I thought were psychiatric problems that turned out to be the results of how my brain is constructed - an integral part of the autistic person I am.

I am incredibly fortunate that nowadays I have support around my executive functioning deficits, paid for by the UK social care system. So now I get help to prepare regular meals, my laundry gets done, the garbage goes out, if I need to send a letter someone will help me stay on task while I write it and then post it for me, and yes - at last - I get the prompting I've needed all my life to maintain my personal hygiene. :)

I'm not depressed these days, although in my life I certainly have been. The clinical psychologist who diagnosed me with autism confirmed what I had long suspected, i.e. that my depression was entirely exogenous, brought on by the problems of being autistic in a hostile society. And I can honestly say that, second only to the profound relief of actually receiving the diagnosis, getting the ongoing practical support I need has caused the biggest improvement in my mental health.

This is another, better paper on autism and executive functioning: http://eprints.gold.ac.uk/2558/1/Hill_2004_GRO.pdf.

Cary, please don't feel I am 'having a go' at you - you clearly do a lot of good in your work and justifiably have many admirers in the autistic community. I hope you find my comments and links helpful and informative.

Cary Terra, M.A., LMFT said...

Definitely not all executive dysfunction issues are related to depression - I tried to be careful about not conveying that, so I'll take another look at the post and see if I can clarify.

I am so glad to hear of your success. And so glad you are discussing these issues - no experience is like personal experience.

Fat Hamster said...

Cary, I only saw your most recent comment after I'd written and posted mine.

Yes I agree it's confusing (dopamine deficit being implicated in both depression and EF problems). And depression can most certainly cause EF problems - in autistics and in other folk - and add to them when they are already present (which in effect looks the same as making them worse). I have no doubt they are related.

But it's a chicken and egg thing - in my experience and that of many other autistics I know, the executive dysfunction precedes the depression. So relieving the underlying problem (i.e. accommodating the executive dysfunction by providing ongoing appropriate support) can remove the depression more effectively than treating the depression as if it were the cause of the problem.

Two autistic women friends have commented on my Facebook page, where I shared your blog post along with my first comment here, and have given me permission to share what they wrote:

A said, "While autistics are often prone to depression, and depression *can* make 'functioning' more difficult (for everyone), executive function issues are quite a different matter. The psychological approach simply doesn't work to alleviate them, and actually can do damage."

B said, "The author also seems to think inertia [a term often used by autistics to mean executive dysfunction] means just sitting there doing nothing. Whilst it can mean this, it also means inability to stop, or change direction. So inertia is not all about staring into space and looking depressed either."

A replied, "Yes, exactly. I've experienced both variants, and frequently a combination of both. But Selina's observation really addresses the core of the problem, the reason why it's so difficult to get help (or even just understanding) from people who are not on the spectrum. They simply can't 'get' the nature of the issues we're confronted with ... You're very welcome to quote me on this, Selina. It's a really important issue, imho."

B added, " ... I agree with what you said about executive function absolutely being involved in basic hygiene. There is a huge gaping hole in between step 1: run bath, and step 2: remember to get in bath (oh, it's gone cold). It's amazing what I could achieve if only I had some EF - a hot bath would be a nice start!"

I hope hearing the experience of a couple of other autistics is helpful.

I'm going to try and stop commenting now because otherwise I'll go on and on repeating myself. (Uh-oh, task-switching alert!)

I'm hoping I can focus the energy I've experienced around this debate into blogging on the topic - so far my EF issues have always prevented me from blogging. If I succeed, I will post a link here.

So thanks for the space, and your responses, and all the best. I hope at least I've given you some food for thought.

Fat Hamster said...

Just to add thanks for your last, very positive, response. Perhaps we are not so far apart in our understanding after all. :)

Anonymous said...

ppppllllleeeeaaassee write a book. this is very good stuff.

Rebecca Burgess said...

I just wanted to say I think your posts are wonderful and insightful- how refreshing to get a psychotherapist POV on Aspergers! Perhaps because my Mum is a therapist, I have a huge curiosity to understand if many common traits in autism are more of an 'effect' rather then a 'cause', if that makes sense. Your fantastic posts and observations really help to answer my questions on this matter, and also help justify my constant annoyance with the common idea that autistics dont have empathy or dont get upset by things, or that they dont have any imagination (I think the most imaginative person I know happens to have AS!). All the austism/aspergers art groups I follow online show quite the opposite (art and characters being a pretty great way to express yourself)and it is really great to see someone putting forward these kinds of observations and looking at the spectrum in a more flexible and understanding way.

Anonymous said...

IMO it really doesn't matter what the cause is, as long as what you are doing to help the client results in increased ability to function in a way that is acceptable to the client. Side effects on each side, perhaps dependence on mood altering drugs with side effects, or dependence on outside supports, that might be costly or unsustainable. If you are able to help clients without drugs, on continued dependence on psychotherapy, which can be costly, then I think it's very worthwhile and hardly matters how it all starts.

Art said...

Excellent article. I cannot explain it but my experience lines up with your observations, i.e. once my anxiety/depression was resolved, my ability to handle tasks I previously avoided increased dramatically. Depression is flat for me, not sad. Mustering the will do do things I don't want to do is more than I can manage when I am depressed. Dr Riabova in Bellevue is the one who identified this and I am thankful.

Anonymous said...

Can you help us more? We need a book or a seminar or podcast or something. I always feel like I want more when I visit this site. It is unique. Where are the other therapists who see it this way? All I find are therapists who tell me there's no point trying to connect with my HB.

Anonymous said...

This is very helpful. I have always struggled with avoidance and have not been able to explain why. This makes sense to me. For the first time I may have some insight as to why it's so hard for me to do the basics, yes like hygiene. I have been too ashamed to address it in the past. How so you tell anyone that you're a grown man who finds it impossible to shower?

Cliff

Anonymous said...

I see this alllll the time. I never knew what to call it, but my husband and I are so tangled up that I never know where the anxiety started. And he looks so clam that I feel like I am crazy. I don't know if it is coming from him or if I am imagining it. But I swear it's like I get it through the ether. This is a big deal for me, thank you for writing this. Please write a book, this is very new information from what I have gathered in my research. Keep up the great posts.

Anonymous said...

I was just diagnised with Asperger's syndrome today, by a very knowlegable psychiatrist with experience working with Aspergers.

I avoid doing anything, because it is never good enough. Medications help alot, but it is still hopeless. I do so much research to understand other people, to understand relationships. But it is never good enough. As a Asperger woman, finding others like me is extremely difficult. Why bother living a life of constant fighting and isolation? Why bother running to stand still every day? I don't understand therapy.
Why do anything if you can never give people what they need to feel loved? We might as well all move to Antarctica and start our own country.
Why bother living if you'll never be human?

David Layton said...

I feel so much for the person who wrote the previous post. I feel so lonely - and struggle to make any meaningful connection with other people. But it is possible to make other people feel loved - even if we don't understand why it should work that way. There is so much misunderstanding about mental health and autism - glad that some people are thinking about it. I believe our experience of 'depression' is really quite different to NTs and needs quite a different approach to try and deal with. We all have so much to give - even though we can find it so hard to find the right approach for the situation we are in.

Annette said...

Exactly! Why bother doing something pointless? Mundane "chores" are torturous! The thought of doing five minutes of dishes takes more emotional energy from me to get motivated than putting in a full day of hard farm work outside in the Bobcat.

Seriously, I get tired and lethargic and have a very difficult time with laundry, dishes, dusting, and other mundane things - but I can work 12 hours straight with no breaks studying something I am interested in learning, working around the farm with the Bobcat, training horses, etc...

I never associated the "learning" or "meaning" to the reasons for my struggle, (I just thought it was "boring"). This makes so much sense to me. Now - how do I find "meaning" in doing laundry?

Annette said...

ps.
I know this was about depression, but I really am not depressed... well, except that it IS depressing when you struggle with doing simple tasks that take so very little effort, yet can work your arse off non stop doing something you love.

Makes me wonder if THAT is the cause rather than being depressed as being the problem, resulting in a circular pattern.

Alana Roberts said...

At times I cannot help but wonder whether the recent explosion of autism diagnoses, especially of people who seem otherwise normal, simply represents the blooming of an enormous population of people honest enough to know that modern life is unbearable and inhuman.

If the common trait that links all aspies together is honesty, perhaps we are simply that demographic for whom society's elaborate scaffolding of adaptation has failed in the thoroughly strained context of contemporary social engineering. If honesty, like other human traits, can be described by a Bell curve, then surely as modern life requires more and more artificiality, a larger and larger percentage of the population will fail to achieve - or refuse at some deep level to cooperate in - the necessary level of artificiality and become depressed, disenfranchised, alone, and plagued by feelings of purposelessness and ontological horror.

If so, it's a very ironic reversal that we are the ones who should be seen as abnormal. If life adapted to us, rather than the other way around, the world might be a far more functional, simple, and kindly place.

Anonymous said...

Hello! This is the very first time I've commented on a blog. Finding a blog and commenting on it is my first assignment in a course that is teaching me how to become a blogger myself.

I am 49 years old and was diagnosed with Asperger's seven years ago. After all those years I and everyone around me spent wondering why someone as "smart" as I am couldn't hold down even the easiest of jobs, we finally had an answer. I never did quite figure out how to be a part of the "traditional" workforce, however, so now I am trying my hand at freelance writing. The blogging is the first step on this journey.

I have battled depression my entire life, and it is difficult to determine how much of it is caused by AS and how much is not. I am also not certain which creates more problems in my day-to-day life, my depression or my executive functioning issues. The biggest obstacle I am trying to overcome is that first I just can't seem to get started on a given task, but then once I finally do get started, I find myself unable to stop doing it. The task itself is irrelevant; it can be something fun and/or meaningful or something mundane such as cleaning the house.

What does seem to help me are timers that either talk, light up, or both. I don't know why that extra stimulus seems to make the difference. Now if I can just make myself use them consistently...

Jennifer said...

Thank you SO very much for posting this article. I know it was written a long time ago, but I just came across it. I had to stop crying so I could write this comment. You hit the nail on the head when you said "work is to be done for a purpose. A demand for purposeless work, or what feels like purposeless work, can actually exacerbate avoidance symptoms" I feel exactly this way - when my depression & anxiety are at work, any task that should be fun or interesting is meaningless & feels like pressure if it's not something that I think the rest of the world might see as silly or useless, such as my favorite hobbies. So, I end up avoiding them, feeling more & more pressure, sadness, sense of failure, instead of just sitting down & completing something that I know I'll love doing if I "just do it!". My brain knows what to do, but my body won't allow it. That's probably too much info for you, but I just needed you to know that the time you took to write this article helped me put into words what I've had a hard time explaining. Thank you!

Jennifer said...

Oops, meant "if it's something that I think the rest of the world..." Omit the "not" I threw in there :O)

Anonymous said...

I don't lack confidence (I know what I'm good at), and I'm not an under achiever (I'm just not apppreciated); I don't want flattery, I want opportunity; I don't want success, I want security.
If I can't have those things I can't have my ideal life ...and I can't just resort to any old job / any old partner / any old hobbies, so I'm stuck.
What to do when even your therapist thinks an anti depressant will fix the world?

Anonymous said...

Wow, just discovered this article. This is exactly what I'm going through, as a 26 year old ASD female. I was even just thinking to myself earlier today how unbearable it would be if life was always this way. I didn't understand what's going on with me, neither do my therapists, unused to ASD in women. It is actually such a comfort to discover that there are others that feel this way.

Anonymous said...

I completely agree. It is absolutely horrid. Please understand. Yr autistic spouse may desperately want to want to d something and even have a list f reasons to do it, but still feel paralyzed because curiosity is what get the juices flowing. If it's not there, no juice. It's like extreme thirst.

Anonymous said...

Please spare a thought for those of us who, although not depressed, can relate to the lack of motivation in tasks that hold no meaning. Above all, I am talking about those of us who did not get the support we needed in school and whose qualifications don't reflect our intelligence. The types of jobs that we end up in don't nearly satisfy our need for intellectual stimulation, and just dragging ourselves to work day in, day out is abject torture. People then say, "Oh, well, why don't you just go to college so you can get a profession?" Aside from the monetary cost and the physical energy cost this would involve, I have heard too many scare stories of people who get even higher degrees and can't get anything better than washing dishes.

sam craft everyday aspergers said...

Hi I'd love to meet up with you sometime. I am an hour outside of Seattle. I have a well-read blog Everyday Aspergers. You can reach me there. Adult female on the spectrum. everydayaspergers.com (former school teacher, mother of three, published in peer review journal, recruiter related to ASD)

Jess said...

My goodness. I read this, and thought, "oh". You're managed to perfectly describe what it is I feel: depression as apathy, with low motivation and an inability to climb out despite knowing that I'd better, or meet the consequences. It helps to see it in black and white.

Thank for writing it.

Raven Luni said...

Interesting, though I can't agree with all of it. What you term 'avoidance' seems like a purely speculative view of we on the spectrum tend to call 'inertia'. The problem is that one gets 'locked in' to a particular mindset (even if that mindset is not associated with a specific goal). You might have heard the term 'changing gears'. Whenever we initiate any task, there is always some mental preparation involved. We have to get into the mindset for the task ahead. This is the core of the problem. For some reason, it is often very difficult to do this. Essentially, the autistic brain has a problen with task switching. If I was to speculate, I would say there is a bottleneck in the neural circuitry which is supposed to handle this.

As for depression, it very much affects the problem (as it lowers performance even further). Depression and anxiety are also caused by the problems due to frustration, deadlines and other denamds etc. so a bit 'chicken and egg' there.

Anonymous said...

The question is, can people on the spectrum actually learn, acknowledge and internalise that things are important and necessary.

Good article. Shame there aren't that many therapists who are trained or experienced in identifying such in people on the autistic spectrum.

Anonymous said...

My teenage Aspergers son son has been suffering from this cycle of anxiety/depression and school avoidance for 2 years. School refusal, according to the school officials we work with, is the fault of the parents, and we are trying to help them understand this is not a parenting problem. We've spent thousands of dollars and hours in specialists, doctors and therapists (some of whom are Autism Spectrum trained and NOT covered by insurance), and finally found one who is making progress. That progress is amazingly slow, as we try to find what motivates our son and what causes high anxiety. Medicine has helped, but doesn't cure, of course. Last night my son explained that he needed a break because he's experiencing higher anxiety. He goes to school 3 days a week for about an hour each day. He wants to go back to school on a regular schedule, but part of the problem is, as you mentioned, he views school as "inefficient".

This article really helped me understand what he was trying to tell me last night and how exhausting that anxiety can be for him. There are many articles that explain Autism Spectrum behavior and Depression behavior, but this is the first site I've seen that explains the challenge for those facing these two diagnoses together. I want to do more to help others understand and work with this behavior, because we feel very alone in it.

Matthew Baker said...

I have High Functioning Autism and suffer from some of the things you mentioned above Cary, especially lately I'v been suffering from almost a near severity of forgetfulness and loss of memory which is actually caused from Complex Seizure Disorder. Before 2011 I had the greatest memory around and would remind someone to do something and now its them reminding me to do something. My behaviors are literally mutating constantly and is annoying. I now eat slower because of it, I'm scrunching my nose and brushing my tongue against my teeth and having the urge to purposely shake things when I don't suffer from Tourette Syndrome. I suffer from Sever Intense Anxiety Disorder and Stress Disorder. I'll say I'm gonna apply for a job but don't do it and then disappoint myself. I say I'm going to ask this one girl out and don't do it and get even more disappointed, and feel depressed about it. I think that a mentally normal women won't marry autistic men due to our challenges and lack of understanding of complex situations. I want to get married to someone normal but don't know how that will happen with out someone's help. I feel like true love doesn't exist anymore because of how our society is today and how the divorce rate is climbing rather quickly. I want to become semi-rich to avoid money issues in the future when we enter hard times. I want to live a anxiety free successful life with a successful career, and get married to a wonderful, caring loving woman who will be faithful, trustworthy, love me for who I am, a Christian, and won't cheat on me, and have at least 2 children with me. Cary, please help me make this happen before its too late.

Anonymous said...

I went searching for answers about my inertia when i am not at work, I cannot read social cues, it takes me time to put two and two together, My kids are moldly autistic and since my divorce I am sure that I fall somewhere on the spectrum. Im terrified to let anyone in on this, as I dont want to be viewed as my parents viewed me: ditzy, distracted, unable to handle anything emotional, not taking anyone else's feelings into account. I have very few friendships because I have no idea idea how to maintain them. My impulsivity and lack of ability to stick to a budget has me constantly in debt. Finding this article helps a bit because I know I am not alone, I dont know how to find someone in my area to help me.

Anonymous said...

Very insightful and helpful. I always felt like there was a distinct difference between procrastination and the feeling that makes me AVOID something rather than just putting it off. At last I have the right word for what I'm feeling and this will help me identify it when it happens and address it appropriately.

pwlsax said...

Look out, folks. Trump's America is going to crack down hard on the different looking, different abled, and different thinking. Understanding and acceptance are over for the duration.

You will be resented. Your character will be attacked by people who don't care about you and don't care to be told. You will lose benefits and you will lose rights. You will be considered entitled, privileged, and lazy. You'll be no better than welfare cheats or illegal immigrants.

I hope you have cultivated at least some coping skills and deep friendships and loves. You're going to need every bit of them. I will, too.

Anonymous said...

UGHHHH
I JUST NEED TO SAY THAT I'M AUTISTIC WITH NORMAL MAJOR DEPRESSION :T

Hugh Griffin said...

Everything in this article describes my life. I am 43 years old with Aspergers and I'm also chronically disorganized, and with no earthly idea how to remedy the problem. And my problem is not about cleanliness or orderliness so much as it is not being completely scatter-brained, prioritizing tasks, or planning ANYTHING. In fact, the very moment I sit down to try to create a to do list or prioritize my tasks, it's like all the gears in my head just lock-up and freeze. And then I go into a silent panic mode that causes me to silently fall apart inside. So then i get up, walk around, come back and try it again, but only to go through the same thing over and over again.

I've been called stupid, slow, playing dumb, childish, dumber than I look, lazy, and suspected of taking drugs. Until my late diagnosis (and then finding this post) I was beginning to believe that there was no hope for me in this. But is there?

Does anybody have any suggestions? Can you recommend any other websites, etc that will be of any help for me???