Sunday, October 18, 2009

How can a positive diagnosis of Asperger's help an already established adult?

There's no question about it, the majority of Asperger's diagnosis' handed out today go to children. It is also pretty clear that the diagnosis provides access to a lot of ongoing early intervention and is the most successful way of dealing with the problems condition poses.

Some time ago I asked whether or not it made sense to label our children. Although the answers were far from unanimous, the majority seemed to support the label. This was because in most cases, a diagnosis provided obvious benefits.

It's a fairly simple question when aimed at children but it becomes a very different question when aimed at adults. It's difficult to tell whether or not a diagnosis can be useful for an adult who has already become well-established in the world, though not necessarily successful.

A Lack of Obvious Benefits
For a start, the obvious benefits just aren't there. There generally aren't any government handouts for adults with aspergers and revealing your condition to a prospective employer is more likely to hinder rather than help, your chances of success.

In fact, there is an abundance of stories about people who have lost their jobs because of aspergers though many of these relate to the symptoms themselves, rather than individuals "coming out of the closet".

Of course, bringing up the subject of aspergers after you've been berated by your boss for your poor social skills probably does seem like an excuse. It does make sense that some employers would take this the wrong way and terminate ones employment. This is similar to bringing up the subject after you've been accused of a capital crime (see: Martin Bryant or Gary McKinnon).

Cost
The other major factor in not getting diagnosed as an adult is cost. It just doesn't make sense to spend a lot of money on a label which isn't necessarily going to provide you with any material benefits. The high cost is probably the main reason for the huge number of "self-diagnosed" aspies out there.

Depression
Some people just can't handle labels and it's hardly surprising that one of the first reactions that people have to a diagnosis is depression. I can remember my own depression at the time as a sinking feeling that I wasn't as "unique" as I'd always believed. Instead of being a product of "my internal self", many of my creative and intellectual pursuits were driven by a "syndrome". I was fortunate to be able to move on from my depression easily - after all, I reasoned, it was only a label. I'd been myself before the label. I would be "myself" again afterwards.

Other people however don't have it quite so easy. For them, it's about a genetic weakness or about passing their problems onto their children. People who had difficult childhoods are especially prone to this sort of depression because they feel that it's their fault that history will repeat for their children. In reality of course, it's often more likely to be environmental factors which have the greatest impact on the happiness of children. Provide a happy and supportive home and most children will find happiness regardless of other conditions.

Benefits?
Of course, there are benefits to having a diagnosis, but they're much less tangible. For a start, when you discover that you have aspergers, the diagnosis casts your entire life in a different light. You begin to understand why you never felt like you fitted in. You understand the reasons for your depression, your failed social experiences and your obsessions.

I'm not saying that you can change, in fact, I'm suggesting the opposite. You can however more easily accommodate your weaknesses because in accepting them (and yourself), you can stop living in the shadow of your past "mistakes" and move on.

In my case, I was able to accept that there were very good reasons why I hated social events and I stopped "forcing myself to attend". Sure, I'll still go to some social events but these days I don't feel quite so obligated. There's a reason why I'm not good at them and no amount of practice is going to make that reason disappear entirely.

I've accepted myself the way I am and I feel much better for doing so.

33 comments:

Rachel said...

Great post, Gavin.

Getting diagnosed with Asperger's later in life has been a great relief to me. I've gone through a lot of post-diagnosis grief, but it's had less to do with the diagnosis, and more to do with recognizing what was there all along: that I'd never reach that elusive goal of becoming "just like everyone else." It's difficult to face these things, but I wouldn't give up this process for anything. I am seeing myself more clearly and understanding more about my life than I could have without the diagnosis. For me, that is a tangible and crucial benefit.

My greatest frustration is the lack of services for Asperger's adults. Think of how many adults have been autistic all their lives and don't know it yet! I wish there were some sort of outreach to people who have lived 30+ years with this condition and can't understand what's up with them.

Dave Angel said...

That's an interesting article Gavin. The benefits are much higher for children than adults. Rachel's comment is also so true - a huge lack of services for adults. But to be honest even children's specialist services are pretty limited. I couldn't work out if you are saying you actually had an adult diagnosis or not Gavin?

Dave Angel said...

Very true Gavin and also Rcahel's point about a lack of services. But to be honest children's servcies are not as good as they could be in most parts of the world. Thanks for interesting article Gavin.

Dave Angel said...

Oops just saw that my 1st and 2nd commenst went through direct to you Gavin - sorry I thought there was an error!

Gavin Bollard said...

Hi Dave,
I did get diagnosed but it was only relatively recently - aged 37 - and in response to the discovery of my son's diagnosis.

It hasn't brought me any tangible benefit but I do feel better.

M said...

i read about a lot of adults getting the diagnosis and reacting with a sense of "so that explains it". it's basically positive, adds clarity. i just never reacted this way, it's been a tough pill to swallow. my sense is that it really depends on where you are as an adult, in your life. if a family, career are in progress...then having a diagnosis = self-understanding, it's good to know. not a big deal. but if someone has been isolated, isn't doing very well in terms of large-scale life milestones...then it can be a raw, painful thing. finding out that there was an undiagnosed condition, that's sort of bitter realization. knowing that the differences that have contributed to one's difficulties are then going to be there for life, making progress with the milestones difficult, every step of the way...that it's a long road from that point on, all uphill...anyway. self-knowledge is good...sometimes. it can also be painful, dangerous, a thing with edges.

Anonymous said...

My husband and I have been spending thousands of dollars on child therapy for our aspergers 9 year old. I am glad to say we can stop spending money after all these years, and start reading your blog it has givin us a real ray of hope so much more than any therapy session thank you

Anonymous said...

I'm 21 and only recently found out. I've been ecstatic!

For one thing, I spend several hours a day rocking, which I'd been trying to quit since I was a teenager. My family always told me I was a freak for it, and it's a huge time waster. If I could dedicate that much time to anything else I'd be much better off. It's something that caused me a great deal of shame my whole life. It's also made school and work difficult as I often would rock instead of doing homework or going to class or work. When I get stressed out I tend to stop functioning and start rocking (although only in private). Finding out why I rock was revolutionary.

It also brought to light issues I wasn't aware of before and gave me and my boyfriend a chance to talk through them.

I'm a lot better off now.

Gavin Bollard said...

M,
I can never understand why people place so much emphasis on milestones.

I had three things I wanted to do;
1. Get a Degree
2. Go Overseas
3. Get married and have Kids

I achieved the last of the three about 6 years ago and I don't have any more. I'm done.

I was rushed to hospital earlier this year with a heart issue and as I was lying in the bed, I thought... "well, if this is the end, that's ok. I guess I could go now".

My wife was obviously not too happy about this comment and I can see why. The listmaker in me has ticked the last tickbox.

I think it would probably be better if I stopped living the milestones and started enjoying life for what it provides on a day-to-day basis.

JenM said...

For most I can see where an adult diagnosis doesn't give you much but as the wife of an adult diagnosed with Aspergers I DO see a benefit.
I have been married for 15 years and only in the last year and a half have I started to really understand my husband. At least for us there was a communication gap that drove me crazy and didn't bother him much at all.
With out going into tons of detail let me just say that after reading everything I could get my hands on and talking to an expert both my husband and I are happier with our relationship. In our case at least diagnosis lead to a very positive outcome.

M said...

"I think it would probably be better if I stopped living the milestones and started enjoying life for what it provides on a day-to-day basis."

i certainly don't think living for the sake of filling out a checklist is the way to go. but basic, basic milestones...compasionhsip, friendships, having a child...i think it's okay to desire these, feel pained at their absence. i probably just should have used a better word than milestone since, as you indicate, it connotes a checklist sort of mentality.

Catana/Sylvie Mac said...

Everybody's different, of course, but for me, the benefits are tangible and important. I just wish I'd known about my Asperger's before I became a widow. It would have helped my marriage. I was delighted when Asperger's filled in the last gaps of my self-knowledge. It's made a huge difference in my life.

Sir Wobin said...

I have 3 reasons for seeking a professional diagnosis:

1) I use words "strangely" sometimes. I can be very literal and sometimes people think I'm poking fun at them or being sarcastic which isn't so. It would be nice if I can explain why so that we might better get over the miscommunication. Dealing with police and authorities worries me especially in this regard.
2) I have classic level of detail problems at work. I don't want my management to think I'm slacking or thick but they might need to be explicit in telling me what they want.
3) My coping mechanisms are quite good and many friends and family members simply don't believe that this is the case. I can see their point that self diagnosis from something I read on the Internet can be quite suspicious.

In each of these cases it's about being believed that I really do have AS and that I'm not just being difficult. I really want to be believed in these situations and it's important enough for me to spend the money.

Lee said...

Gavin, I felt exactly as you did when I was diagnosed as an adult as relating to the initial feeling of depression. I looked back at my life's choices, hobbies, pursuits, friends, (or lack thereof). I felt, and was told, that I was a uniquely different individual, then later learned upon diagnosis, that my choices had been "typical" of a person with AS. This saddened me, as I began to wonder, how individual am I, am I just an Aspie, no free will here? I know, too deep for me as well. Yes, I also am a list maker as well, wife always complaining I can't live in the present but am always projecting future goals/results. That all being said, the depression did give way to relief, as I felt a peace about who I am and why I am. Keep up the great blog, enjoying it as always.

eaucoin said...

Gavin, I wonder if the reason why you fared so well even before being diagnosed is that you had another disability which was recognized. Was there maybe less obsession with how you were different since one way you were different was recognized and accepted? In terms of what you missed hearing, some of it was probably verbal abuse that would have damaged your emotional resilience. When I look at my own siblings, it's not the one with the greatest handicap who fared the worst, but the one whose difficulties were not recognized as evidence of being disabled but instead were attributed to selfishness, stubborness or laziness.

Tyler Mac said...

You are very precise with your research, i myself am diagnosed with Aspergers, i just find it so hard, i thinnk for the beat suggestion for our children is to have them checked early.

DJ Kirkby said...

I feel that being diagnosed with AS at the age fo 40 was very life enhancing. I can now explain to people, with just a few words, why I am the way I am. I felt no grief and have moved forwards at a great pace. Life is still a daily struggle but it is now a struggle with a purpose.

Lee said...

Gavin I sure hope your heart issue is ok. I related to many parts of your post, especially the initial feeling of depression when I realized all the quirky habits and mannerisms which I thought made me unique suddenly just seemed to be manifestations of the Asperger's. I wondered how much free will I was exercising, and how much was being created by my "condition". Now I have come to to accept myself and feel truly relieved that there is an explanation for everything I do. Keep up the great posts, and I hope you are well.

Lee said...

I realize I posted nearly the same thing twice, I thought the first post was lost, my apologies.

Anonymous said...

At 39 years old I have yet to get the official diagnosis. I am working on getting it for free through the State. I just recently discovered that I probably have Asperger's in the last 2 years. My daughter has just been diagnosed with it, she's 20. I can see it in my 2 other children as well.
For me the diagnosis will be a positive thing. It helps me understand why I have been on the outside my entire life. What I am sad about is the same thing I've been sad about since I was younger, that I can't relate to people and am left out by most. As an adult I am struggling in the work place, like Sir Wobin's experience, because of needing to hear instructions explicitly to understand them which makes me look like an idiot. Taking things too literally is hurting me at work too. So, I'm sad about the way this affects my life but happy to know why I am the way I am.

Bea said...

Hi
I don't have a diagnosis of Aspergers and in fact work with children with severe autism. I have recently came to realise that I fit the profile of someone with aspergers and actually it does and always had quite an effect on my life. I am looking at exploring a private assessment as I feel that it would actually explain a lot of things in my life and would like that confirmation.

Zena Warrior Princess said...

Thank you for your informative posts. I am new to blogging and have not quite figured out how to leave comments or encourage others to read my blog. I am a wife of someone with Asperger's Syndrome/characteristics of AS. I have loved him for five years and from the start, knew he had Asperger's but am still learning and growing in my comprehension of his brain type and my brain type and how we can work together and grow together. Would love to hear from you and have you subscribe to my blog as I am looking to establish a support system and to educate myself more about this brain type. Thank you.

Gavin Bollard said...

Zena,

The best ways to promote your blog are to;

a. Include it as part of your signature on forums in which you post.

b. Comment on other people's posts as yourself. This often encourages the original bloggers to follow your comments back to your blog and become "followers".

If you want to contact me you can either do it via my Facebook page or via the Kontactr link on the blog. Both of these are worthwhile additions to your own blog.

Good luck.

Lee said...

I was diagnosed two years ago, aged 47. It has been a very positive experience for me; I'm now financially much better off and am receiving regular support from Social Services. Unfortunately the damage done by all those decades of social isolation cannot be undone.

johndoughy said...

This article is very true. I found out and it did leave me feeling the most screwed up I've felt in years for about a week, but since then, I have seen everything differently, and know what I am working with.

I appreciate your blog, perhaps it seems silly sometimes(as it does to me) to write about yourself constantly and in depth, but comparing your posts to myself, my wife will see things better for what they are. So I appreciate this blog, for my wife's sake!

O. said...

How much ways did I try to solve my problems... finding friends, finding a woman... finding a job.

You run around and never get things accomplished, or if you can start something, it ends in chaos...

...and try again and again.
And then ... becoming discouraged.

Maybe later trying again... and failing again...

...with different approaches...
...and never get it done.


Then a diagnosis on Asperger (I have none so far but want to get a yes/no on that topic from an expert soon) would blow away the haze.


Some things I might never get done; or maybe I get it done with a different approach...

...not in trying to be "like the others", because I don't know how to do that.

If for example I try to say nice things to a newly met woman, and this is coming out of my ratio, and my own thinking about the situation... no wonder that it always go wrong, and she might become pissed of by me.


And if I try to imitate the other men, but I can't do it that way, it will always look clumsy. => fails too



But knowing, that I will never be able to do it "the normal way" (or one of the many "normal" approaches of NT's I know that I have to radically change my strategy.

Then I see it's not my fault to be a loner. Sometimes I enjoy it, but often I hate to be one.

I'm in the mid 40-ies and was most of the time of my life alone. And I looked for ways to change that. The NT's way did not worked for me.

And I doubt it will ever work for me.

So, a diagnosis on Aspergers would show me clearly: this and that can never work for me.

And I see it as a possibility,
start trying to solve the problems in an Aspies way, inmstead of a not-for-me-worlking NT's way.

I really hated me to not get things done. A diagnosis would help me a lot.
I had many psychotherapies and they helped only little.... because the psychologists didn't know about Aspergers and tried to impose other diagnoses on me, which always were nonsense.

rekall said...

"but i do feel better" is a benefit inherent in the process of seeking advice, i'd say...

i'd often suspected myself a self-titled "highly functional autistic of some sort" but arrived at an initial diagnosis of asperger's today during my second session with a psychotherapist (ever).

so now at least he and i can work on developing "tricks" i can essentially play on my own mind whenever i need to successfully interact with mere mortals in my midst ;-)

Age 35, here.

Lauri Crowe said...

Excellent article. As a woman with both her children diagnosed with Aspergers and seeing a lot of traits in myself I've contemplated the merits of getting a formal diagnosis. However, giving my unique way of being a label offers no benefit. As a family we already embrace our "weird" and "special way" of looking at the world. I do think for kids it can offer a lot of benefits, and it definitely helps in the long term to recognize that being different isn't always a bad thing. We consider Autism a gift.

Anonymous said...

I am very sure I have Asperger's. I'm 20, though, and my mother didn't believe in doctors so she never got me help.
I am seeking a diagnosis because I feel like I need help. I know what I'm doing with my life (becoming an academic) but I need social help and help dealing with all this stimulation....if I don't get it I'm afraid that my intellectual life will suffer, and it's the only part of life that brings me joy and happiness. It's who I am.
Are there services for adults who get diagnosed? I hope so, because this is tough.

Marley Kool said...

Hello, and thankyou for your friendly and simply informative blog. :)

I am 53 years old and have flirted over the recent year with the possibility that I may live with aspergers

I recently read a news article about an 18 yo working and living with as, and due to the events surrounding me, and the emotional turmoil they have illicited, it was glaringly obvious, that I do live with this.

I then found my as clearly and simply explained here http://autism.about.com/od/aspergerssyndrome/tp/whygetasdx.htm

I have fought all my life to fit in, feeling like I am the only person like me on the planet. I snub, ignore, and push people away, to protect myself from the non-acceptance and rejection that I will perceive. I see myself as selfish, self-centred, self-obsessed and most of all - scared, that there has been and is no way out of my profound lonliness. My husband is always there for me and we have four beautiful children, hey, what could I want for more ? But I do. :)

SYM said...

"You begin to understand why you never felt like you fitted in."

hit the nail on the head, though at nearly 40, I will probably never be diagnosed, just understanding why I'm different, that I'm not a freak has changed my life forever.

we are going through the process of diagnosing my daughter and I worry a little about teaching her social skills when I don't have them, but will cross that bridge when I come to it . . . :)

Anonymous said...

Labels aren't the problem itself: If find it counterproductive to insinuate that they are, even in passing.

Furthermore, people who pass on genetic conditions, whatever they are, ARE responsible for their children's suffering. For the obvious reason that, if they had not procreated, no one would have suffered.

And back on the topic of labels: they are FREEING. That is because they explain why you are the way you are in ways that people cannot ask you to change, e.g. "oh just snap out of it!!!". Why in the WORLD did you react with depression? That's a non-sequitur if I ever saw one.

Anonymous said...

If you look at the long list of social difference makers with aspergers or some element of an ASD, it's rather apparent to me that Baron Cohen's proposal of a redesignation of Asperger's to a difference of development rather than a "disorder" makes a lot of sense. I don't consider myself as having a disorder. I consider myself part of the small percentage who have a more socially evolved cognitive process, more dependent on logic and honest, less on emotional reaction and self-protective guile.