Saturday, May 26, 2012

The Hidden Autistics - Asperger's in Adults

Recently I encountered a problem while collaborating with a group therapist with whom I share a patient. My patient has progressed quickly in therapy, as do many adults on the spectrum.  However he did not start off as stereotypically autistic.  In fact, initially he presented as many of my patients do: shy, articulate, witty.  Good eye contact.  Appropriate affect.  Typical posture, gait and gesturing.

It took a few sessions to realize this fine gentleman suffered mightly with the symtoms of Asperger Syndrome, which he kept well managed and thoroughly hidden.  Contrary to the stereotyoes of adults on the spectrum, my patient displayed no "meltdown" behavior, was keenly (TOO keenly) aware of people's reactions to him and exhibited no bizarre special interests or encyclopedic knowledge of vaccuum models.

In fact, "Joe", as we'll call him, socialized quite well.  He seemed quietly confident and wry, intelligent and perceptive.  People responded well to him, really liked him, though probably none of them would describe him as a close friend.  No one realized - in fact he often went without realizing - that his baseline anxiety approached panic on a regular basis.  As soon as he was out of bed, existential angst was his constant companion.  His difficulty managing his thoughts made rudimentary conversations minefields to be navigated.  And navigate he did, dodging social errors with the same fright and determination one might actually dodge mines.  After even minor social interactions he routinely found himself exhausted, and would retreat to soothing, isolated activity: sculpture, writing, woodworking.  Not conversation with his wife.

Diagnosing this man was problematic.  He truly did not fit the criteria for Asperger Syndrome.  In fact, the only person to suspect he was on the spectrum was his wife, who puzzled endlessly about this curious man.  He seems so sensitive and kind, she would say.  Yet he ignores my birthday and hangs up before saying goodbye. He's so charming with others, yet so silent at home.  He never misses a deadline at work, yet cannot remember to give our dog his heart medication.

Partners of people on the spectrum are drawn to what they can sense is inside their partner.  Yet they feel shut out, left pining for connection with this special person who remains unreachable.  It can be a confusing relationship, and one that can easily lead to resentment.

So what was the problem I ran into with the collaborating therapist?  She found it hilarious - outrageous! - that Joe had been diagnosed with Asperger's.  When Joe would make an insightful comment during group session, this group therapist and members would share a hearty laugh, rolling their eyes that this sensitive man had been diagnosed as autistic.  When Joe would tear up recounting his wife's rage and disappointment, he'd hear "So Mr. Autistic is shaking because his wife got angry!  Ha ha!  Shouldn't you be indifferent and focusing on dinosaurs?" (I'm sorry to say this is a direct quote.)  The general public, even many clinicians, cannot believe someone like Joe can be autistic.  His social deficits are so well hidden that he has convinced the world his autism does not exist.  And he has perhaps convinced himself.

One person remains unconvinced.  His wife.  After a long day of running what he terms his "social program", feigning natural banter and hiding anxiety, he is exhausted.  His wife comes home to a man who has retreated to isolation as a desperate attempt to find peace and rest.

I'd like to write more about this "hidden autistic" phenomena.  Someone must.  Adults on the spectrum are often too good at convincing others they are fine, have no emotions, are robotic.  This is never the case, and the illusion can be dangerous to long-term mental health for autistics and their partners alike.

228 comments:

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Anonymous said...

Hmmm... I handle social situations exactly the same way...

Unknown said...

Wow. This describes my husband to the fullest. Recently he agreed to see a therapist who told us had he came in as a young adult or child he would have been diagnosed with Aspergers however because he is in his 40's and has managed some what ok that the best diagnoses they could give was a social anxiety disorder. During session we noticed a couple small things. . . He sits on his hands when he's nervous and he continually shift or flexed his feet in his shoes because he was so uncomfortable. He describes his social interactions as something he can flip a switch for, but as soon as the interaeis over he is completely exhausted. I wish there was more I could do for him.

Michele said...

Well written, and my husband and i can completely relate. I am the unofficially dx "aspie" but am fortunate to have such a caring man who has put it all together.

GentlePath said...

This is me!

What a bummer that the most recent post is January 2015! Also ... Seattle! I'm willing to travel for good therapy, but sadly I'm not rich enough to be able to fly across the country regularly.

Here's where online therapy would be worth the risk...

CSATs have a list and special certification do those therapists who work with people on the spectrum? At the very least some special letters would be helpful ...

Unknown said...

I was diagnosed autistic as a child, about 7 years old. When it was all too much I'd disappear into my own world for days on end. Flapping, rocking, and meltdowns were common. I also had hyper focus, and could read or play while the house fell down with out noticing. But I had an excellent therapist. He let me read all his child psychology books, and discussed normal behavior with me. We kept this up for a couple of years, by the time I was 10 or 11 I could fake being a Normie well enough to fool the other children, which is much harder than fooling the grown-ups . He pronounced me " as cured as I would ever be " at that point, and I have not bothered with any further therapy

I went on to study anthropology, which gave me many of the answers I needed to function appropriately. I spent my 20s living in a very foreign culture, that of Tibetan nomads of the high mountains. As someone from outside I was not expected to know the way of things and so people were quite willing to show me how things should be done and I was able to copy them and fit in nicely. Some of my best and longest friendships are with people from that culture.

I am now considered a high functioning ASPI. I still flap and rock, but I go in the bathroom to do it privately. As far as University went, I could never manage to write papers , Too many tangents and repetitions. Fortunately I was able to trade math homework and math tutoring for term paper writing, and so get my degree. Math is easy for me because it has right answers.

I still can't look folks in the eye, feels like fire to do so. So I look at the bridge of noses. That works for me. Conversations are still exhausting if they go on too long. I have many lovers, and two marvelous wives for the past 30 years. And several fun careers that came of my presuming my odd interests with obsessive enthusiasm.

There are many advantages to this syndrome, not only disadvantages. It allows me to take risks that others can't , as I'm just as scared when not taking risks as when I am so why not? It has given me a flexibility in moving from one culture to another because it ALL has to be learned theoretically, and then applied in daily interactions.

Anonymous said...

Me male age 60. It occurs to me the only person truly capable and equipped to diagnose me, is me.
I am most probably HFA aspie. No one notices except my wife. It seems to me that having a diagnosis where there is no defined additional consequential support is perhaps not a useful thing, because the rest of them will simply use it to exclude us as "odd". I'm not odd. I am an example of advanced evolution beyond the rest of them (I forget the term "we" use.. Neuro somethings. ) See you out there - or is that "out here"?

Anonymous said...

I'm a 48yr old British male and finally received my diagnosis of ASD about a week ago. This thread is just about the best single source I have found that I could point someone at and say - "If you read that lot you will have a pretty good idea of what it is like to be me". I shall recommend my wife has a read,,,

Anonymous said...

Well, I tried to comment or share and got anxious. I'm 48, had best friend /"partner, he's same age. Long story short, 30 yrs I revolved Dr's to get a diagnosis of life out of sync. Hundreds of books and resources. ADHD, SEVERE W /INTENSE AND OBSESSIVE, EMOTIONAL SENSITIVITY. Meanwhile, fiance' agreed needed to be tested, only conflict was the irresponsible areas of his making and my blunt direct sarcasm I thought but hurt him so entire 2yr of finding expert, after my first day of the medication, he was a totally different person. Both of us sensitive, but, so accepting that I was sick feeling disconnect and no words for any question why? By 4wk,it triggered a ptsd so similar to the event long let go, I had shell shock. Immunity down/severe poison ivy, no sleep, silent treatment was horrid. I researched all the way to get a clue. Adhd /asp up 70% symptoms are same. Sociopath? Finally, w /harsh and cruel words, got response. Always inability to cope and speak, but I don't know why, and I hurt to tears seeing you in pain, I hurt from the outbursts and I am not able to say anything literally, overwhelmed panic and I have no idea what I feel at the moment. I knew that I had to go away from the stress. 8wks, I'm sucker punched, starting with the adhd, studying aspergers and he bolted in middle work day to pack and get away. He had NO IDEA what he coped is not same as others? I had so many traits in the search for answers and just after excluding manipulative effort, he is lost and I was a animal behavior specialist and never sensed the emotions of fear, rage and joke of him half angel he was so passive. He was more instant pain than me to any hurt feelings, conflict, my direct black and white, assertive action to any confusion in logic, even w/drs plus outbursts. I wasn't sure if I would get a brain back. So, Aspie probably adhd yes, and I'm not envying his awareness fleeing to prevent the hidden normal person to cope and avoid. It's not new to me. I had that, but I worked hard to get treatment for the relationship and others I love. So, I'm not sure what the whole adhd/asp /hpa? Drs picking up my speech issues, sensory issues are extreme, and I have actually world known team including the therapy, speech and are honestly scared of approaching a question with me sometimes and their baffled I agree and learned my ethics are so high, I totally do not have a clue what I have projected as fearful to the professional team? I am just trying to get stable. I am glad that you wrote this. It was a bit help to crazy town here and just sadness. We're just so kind to each other, independent to be alone, truth, trust, but, I know he he needs free will, and no matter what, that's the right thing to do. So what ever all the labels, I yet to get but, no blame helps or judge. We are already there inside. You are the rare person to write in that regard.

Anonymous said...

Hi there again, thanks for posting. I see that it is very choppy to read. I should have rechecked to get the confusion out. I thought it was a limited number of characters and so I did not have good grammar or spelling and my thoughts were to share with any other help with possibly similar issues with the two different types of cross over and if you have any experience with if it matters. I am still trying to figure out what I missed and never saw the adhd in all the books and the years of my search. Weird. But I am so excited to not pretend to be a part of the society and the pain and fatigue of the most often quoted, "but you look normal and dress well and speak well". Half of the day is to make sure that I had the right things for the right job and right degree and right future plans for the savings of retirement and on. So, I am free, Dr is the best st the dopamine trials and scientific testing of the correct dose level, duration, and he also has a evaluation for a physical type of neuroscience body function tasks that show besides the psychological aspects and history, confirm. That was new to me. I guess I am very sure for me, since toddler couldn't bear have clothes on. My mother had cut everything off of tags and seems. I still change clothes all day as the discomfort gets unbearable. With the Asperger being removed from support of health care insurance and adhd services are improving executive functions, digestion, reactivity, and eliminate the life long daily dread of a mix up as anxiety or depression and every other possible ones left, has a hidden continuous life to at least a less stressful explanation for antisocial, only kind of work for stimulus is farms and ranches, like alone time, and my hobbies a health risk in not finding an official diagnosis from anyone else that has hidden it then learned more. I hope that is appropriate to ask? If not, thank you for your writings and for the many comments shared. It's a very positive website and rare to find.

Anonymous said...

You sound like a so called normal woman of today. You think because you are a woman its so much harder. Your wrong, as a man you have to have social skills or you will live a very lonely life being rejected by woman who judge men on there social status and when a man shows weakness like not making eye contact you lose respect and make yourself a target. A woman is judged more on her appearance then anything. You can be shy and not make eye contact and men will still be attracted to you and you dont have to be popular, rich, or a smooth talker. I dont know how it would be to make female friends though. You can say the wrong thing to a man and hes not gonna dump you over it. I was just diagnosed with asperger's and as you can probably tell i have very poor social skills. I have no intrest in making male friends but i still need and demand respect from other men because i dont want to be picked on and i want to someday get married and even get laid but once a woman gets to know me shes gone. Its frustrating. I think you should try to be yourself but at the same time dont act wierd. I dont think thats impossible and i think even normal people have to work at that.

Anonymous said...

N1QE, reading your response has brought tears to my eyes. I've Always felt so lonely, I could never understand why I always had to be alone. The desire to connect with people comes and goes, but the fact I can't hurts me. Your limited 'library of references' has made many, many appearances in my personal diaries, the running out and going quiet - lack of flow in conversation; I'm 28, &I STILL can't figure out how to 'continue' a conversation beyond rehearsed pleasantries!!

Anonymous said...

Well, I'm suffering a lot because of all of this. I know I'm not 'right' my dad has Aspergers, my brother was extremely autistic and had Down's syndrome. But I don't know what I am. I notice patterns of behaviour, acutely and I know that mine isn't like friends and never has been. As a child I felt as if there was glass between me and anybody else. I spent most of my time alone and would hide in my wardrobe when people came to call for me. I hate phones, I won't answer them if I can help it. But I do like people and I can chat effortlessly with people, there's no social awkwardness. I've been told I can't possibly be autistic because I can interact so easily. So why then do people shun me when I can't follow through. I can be chatty and genuinely enjoy being in company - but then I absolutely need space. To recover. I'm hopeless at doing the things that everyone else seems to do easily, household management, for example, even getting dressed is tricky sometimes because I'm so fussy about it. I tend to keep people at arms length, not because I don't like them, but because I know that they will expect something from me that I won't be able to return. When in relationships - I am a loving person, I am an empathetic person, love animals, the wilds. I'm pretty analytical and nerdish, but fascinated by the human condition and what makes people tick. I worried that I might be a sociopath, but I can't be. I genuinely care about people, I have absolutely no desire to manipulate them. Actually, if anybody does me a favour... I feel very unsettled by it. I don't like being indebted. Or using anyone. I would rather help other people than have them help me. This, generally I do by listening and understanding them (not very aspie that is it). I tick every box for ADD. Absolutely. Creative day dreamer. I'm an illustrator. But it's more than just ADD. I am persistently misunderstood. Because I'm so outgoing when out and about and then I'm not at home at all - people can't accept that. Think something about me must be fake. It isn't. I just can't handle too many emotional demands on me, despite being very emotional myself. I'm not trying to be selfish. I think about everybody else all the time... I'm simply not organised or good at acting on any of that. I can barely organise getting up, dressed, clean up and work - so fitting in a social life too becomes really stressful. I wonder if ADD is actually part of an autistic spectrum. I don't know. But I know I feel between cracks. I doubt I will every be able to get any understanding or help. I am incredibly unhappy. Like a clown really, happy, joking when out with people, very solitary and cut off privately. Misunderstood should be on my gravestone.

j jones said...

I'm glad in my country Asperger's is still a separate diagnosis to autism, because when I look up information from the USA they seem to class anything as autistic, from the mentally disabled to geniuses, and it just makes me confused so I wonder if I have it.
I'm told I have to look up information on autism, but they don't deal with people who appear normal and have motor difficulties.

Brendon said...
This comment has been removed by the author.
Leonie Cent said...

It was such a relief to read this blog post. Several therapists have told me that I cannot possibly be autistic. But I know otherwise. I go to great lengths to appear normal in all situations (except with my husband) and this exhausts me profoundly, and makes me feel like a fake or an alien. I desperately want to be understood. Thank you for your most enlightened post.

Anonymous said...

Yes, the struggle for spouses/partners is real. We are expected to support our aspies, but who supports us?? There may well be help out there for aspies but the nature of the condition means they are either in denial that they need help at all or don't want to get it. This means we are also exhausted and suffering trying to manage their condition on a daily basis. We are the carers, but our aspies don't even see our struggle!

Robert S said...

When you discover Aspergers at a later time in life, as an adult, it's very difficult to tell someone. They insist it is one's own incorrect attitude. If one were to act with maturity, it would not be difficult to behave normally. They simply don't believe you. So, I'm reticent about disclosing this even to those for whom it would benefit. If I align my behavior with my natural self, it is offputting to others. If I attempt to put on the "normal" personna, I resent my own ruse.

I offer this comment as a means of mitigating my frustration. My intent going forward is to be more useful.

Anonymous said...

Most commenters on this thread are Aspe's, we are intelligent perceptive logical we think deeply and that needs a measure of solitude being inside your mind. The problem is not with Aspe's but with idiot Normies who claim the top the bell curve both in intelligence and there numbers and so society caters to them advertisers cater to them schooling teaches Normies how to fit in how to think alike how to fall in line.

Sarah Bailey said...

Yes--theatre. Improv.

My life is an improv comedy tour. (Not literally, though.) I'm incredibly good at figurative language when I am making it up. Like Sheldon, I can tell when *I'm* being sarcastic, but it's different if someone else is doing it. I can tell about 70-85% of the time and am embarrassed when wrong.

But theatre helped me, too.

Also visual arts were nice. I think in pictures so those classes helped strengthen a strength which I often use to compensate for my weaknesses.

Sarah Bailey said...

Hello there. Probably you will not read this because I am so late to the "party", but as someone who works with diagnostic specialists and therapists, I can tell you that it is very common for people with Autism to also receive services for Speech Impairment. What you are describing sounds like the expressive/receptive type of SI. Not having the training to give more technical information, I will just say that for students who have this disability, common supports include repetition of important information and giving the student time to think before expecting a response.

The question is what can we do to improve their lives afterward.

Sarah Bailey said...

As someone who is both a special educator who works with populations on the spectrum and who is on the autism spectrum herself, my heart is really warmed by how far looking you are, both for the sake of your children's future and for advice from people who have different experiences and perspectives.

You are amazing!

Sarah Bailey said...

Wonderful comment. Thank you!

Sarah Bailey said...

Salamat po.

You are a good person for trying!

Anonymous said...

Things repeat in our brains...?

SO true. My coworkers are shocked that I have such a good memory, but I think it's just how my brain is wired. They don't have to be as on edge in conversation, so they are not paying attention on the level that I am paying attention.

Also, when I am performing my own mindless tasks, such as cleaning the kitchen after preparing a meal, I am replaying everything that happened to me that day. Good, bad, exciting, banal...all of it.

And then they are surprised when I recall it months or years afterwards. ::shakes head:: it's just how my brain works. I've lived the experience ten times over in my head; an order of magnitude more if it was interesting or enjoyable. They weren't even THERE the first time. Not really.

It's frustrating to have trouble relating to people. To use shared experiences to bond, when 94% of what I remember are not shared memories.

Anonymous said...

Just read the article a minute ago.

I'm amazed by the level of overlap that exists, particularly regarding heightened senses and associated increased sensitivities.

But Asperger's was almost just a way of saying Autism + giftedness. Perhaps I should not be so surprised.

Thank you for the comment and the article.

Sarah Bailey said...

I learned because I am a female high school special education teacher and met several female students who had been previously diagnosed. It was just like the mothers who learned after their children had been diagnosed; I saw so much of myself in their behaviour and mannerisms, I reckoned if they were, there wasn't any way I couldn't be.

One of my coworkers asked me if I had a photographic memory. I told her that I didn't, but effectively I do. I researched pm all the time and really was chuffed at her mentioning of it. At some point thereafter, she mentioned the possibility of my being on the Autism spectrum.

I didn't realise that it was obvious to her. It was definitely clear to me, once I had met those students...if we didn't have a positive relationship I might have been offended because it would mean that I had made a mistake--that the mask had slipped--and if I felt I had blundered in some way I might be pretty irritated by the mentioning of it.

As it happened I took it very well.

Anonymous said...

My memory is kinda ledge at work.

People do find it entertaining.

I can also do arithmetic swiftly as well as do calendar calculations. I have pretty broad knowledge of trivia, both of coworkers over the time I have worked where I am and the pub variety.

I am sometimes quizzed. For their amusement. They find it stupendous.

I feel like a performing monkey.

Or a robot.

Time to tell this system that I am not a robot now as a price for my anonymity, though.

Diane said...

Very interesting article. I'm the opposite. I keep getting fired from jobs, usually after 2-4 weeks, due to behaviors that I'm clueless about. I don't think I know my own behaviors, facial expressions, and definitely can't tell when a supervisor or others are frustrated, disappointed...with me. Luckily, I just got disability, but I still have to work. Three interviews in one year (it's hard to find openings that have no customer contact, are back office, not loud (have misophonia also), don't include standing or walking. Haven't found anyone in my area who knows how to help me. I just keep reading, studying, asking, etc. Eventually, I know that I will find a place to work. Wishing I could be full disclosure.

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