Sunday, April 26, 2009

The Human Side of the Aspergers Diagnosis: Part 2 How Aspies Feel about the Label

The Age Differential
Most people with Aspergers seem to be "born with a knowlege of their difference", though in truth this awareness develops over time, mostly during their primary school years.

The age at which the label of aspergers is used to describe these differences seems to have significant impact upon the way in which they are received by the aspie. Of course, there are other factors too, particularly the way in which others around the aspie take the news.


The Very Young
As you would expect, telling an "under 8" year old child that they have aspergers is pretty similar to telling them that they are wearing a blue cardigan or that they were born in Australia. Their reaction is pretty minimal.

Of course, the fact that you have now disclosed this "secret" will cause them to pay a little more attention whenever the topic is discussed in the household. As a result, parents who have "disclosed" need to be responsible for maintaing a positive view of the condition. At age 8, it's the way that others describe the label rather than the label itself that matters.


The Teenage Years
We all know that teenagers are generally rebellious and angsty, they don't take criticism well and they struggle with self-image. If you attempt to diagnose a teenager with aspergers, they will either, "not want to know" or they'll take it onboard in a negative manner. The teenage years are probably the worst time of all to press a diagnosis.

When teenagers decide not to accept the diagnosis, they'll rebel not only against the label but also against any support you manage to obtain for them. They'll reject the idea of "remedial classes" or "special teachers" because they don't want to be seen by their peers as "different". There's not a lot you can do about this and they can't be reasoned with.

Worse still, is when teenagers take the label in a negative way. They can sometimes decide that the label defines their life and limitations. As a consequence, many diagnosed teenagers simply stop striving for academic or social goals.

Much as I don't favour withholding a diagnosis from a child, I'd be more inclined to keep things quiet if the child was a teenager. It's still worthwhile organising special classes but it's not a good idea to the let teenager in on the reason why these classes are being arranged. If you don't tell, they'll draw their own conclusions.


Early Adulthood
Like the teenage years, early adulthood can be a dicey time to reveal a label. Young adults are struggling with a different set of social issues such as dating, tertiary education and starting work. Rebelliousness isn't as problematic at this age but depression is. Handing out a label at this point is almost like handing out an excuse to stop trying.

Many young adult aspies seem to like putting "road blocks" in front of themselves. They'll talk about a problem, such as not being able to find a job or a partner. Then, when given advice, they'll find a reason why they can't use it. For example, they'll say that they can't get a job because they haven't got a suit. You'll offer to buy one, but they'll find some other excuse like "I don't look good in a suit". If you press against this logic, they'll resort to less and less sensible/logical arguements. In reality, they're depressed.

The label of aspergers should really be presented when the person affected is feeling positive. Aside from study assistance, it's generally uncommon for financial assistance to be given to "early adult" aspies. In that sense, it doesn't really help anyone to reveal the label.


Mid Adulthood and Later
By about mid-adulthood, people are settled into their ways and nothing is likely to have a great deal of negative impact on their self-confidence. They've either been successful (or unsuccessful) in life, love and work already.

It's quite common for adults to discover that they have aspergers because one of their children is labelled with the condition. That's how it happened with me. The initial reaction isn't one of shock, though a little bit of denial is common. The main reaction however seems to be relief. The label finally explains things that have occurred throughout our lives.

Adults in this siutation often say that they wished that they'd known about it earlier. I know that I did. Unfortunately, the truth is that we probably wouldn't have accepted it had we known earlier. Worse still, knowledge of what we are may have changed "who" we are. It may have resulted in depression or other negative emotions.


Summary
I guess the main message of this post is that the best times to reveal a label are either early childhood or mid adulthood. Anything in between increases the chance of depression or non-acceptance. Since most adults would have preferred to know about the condition earlier in life, it follows that the best time to tell is probably around ages 5 to 10. If the condition is given both a positive spin, and a healthy dose of "indifference" (ie: telling the kids that it doesn't matter - and that it doesn't change who they are or what they can be), then the overall reactions and long term effects are positive.

32 comments:

Lindsay said...

I was diagnosed very young --- I was five. (Because it was pre-DSM-IV, the diagnosis was not of Asperger's but of PDD-NOS).

I think it was mostly as you say, like being born in Australia. It was an interesting thing about me.

I also imbibed a sense of being Special, since I was bright and could talk well, while many of the other autistic kids I met through TEACCH could not.

When I got to middle and high school, the angstiness set in anyway. In high school, I was particularly mortified by being in special ed. I hated having an IEP, because I felt it cheapened my academic achievement, and I hadn't used it in years.

Now, as a young adult, I am depressed (but being treated for it) and I am having trouble moving forward. I did very well in college, but after a prolonged job search I could not get employment in my field. I have since been exploring other possibilities, but am still somewhat mired. I do have a lot of friends, a loving family, a great romantic relationship and a fairly clear vision of what kind of life I want --- it's just a matter of getting there from here.

My autism does not hang on me like a millstone, as it sometimes can when younger adult autistics run into difficulties. I don't consider it all that different from any other set of strengths, weaknesses and peculiarities that makes a person who they are.

Anyway, good post!

Larisa said...

i agree. my son's label came in at the age of 12. he sometimes obsesses over it, giving himself an excuse not to do thing he used to excell in. its caused more self esteem and image issues.

Stephen said...

I appreciate very much your sensitivity in writing about this topic. Lindsay, I appreciate you sharing about your experience, along with your victories, and your current struggles. I don't think there is one answer fits all for the question of when to disclose a diagnosis to a son or daughter. I have a son who was on the spectrum early on, and still has a lot of traits. But I think I need to be ready to discuss it with him when there is a context to it, and when he is questioning me. I don't want to keep it a 'secret', but I don't want to just bring it up to him out of the blue either. I hope to have a series of conversations around real life situations that he brings up and wonders about.

Shannon said...

I was diagnosed last year, at age 20. I think I have benefitted form the diagnosis; I could have easily used it as an excuse, but I don't. I'm just happy to know "why" for so many things. I have a friend that was diagnosed in her 30s, and she uses it as an excuse so often it gets on my nerves very much. She pulls it out as an excuse at some of the worst times. I cringe when it happens. I try to use it more to explain why I've always done something a certain way, rather than to justify a new issue or make excuses.

Granted, for the most part, I think you're dead on.

Rachel said...

I was diagnosed last November at age 50, and the impact on my life has been largely positive. It was a bit surreal at first, and sometimes I get depressed about it, but for the most part, it's allowed me to live life in a healthier way. I know my limits now and can assert them. I know when I'm in danger of overloading, and instead of driving full-steam ahead as though I were NT, I pull back and take care of myself.

I am also willing to take help from the people in my life, whereas before I always insisted on doing everything myself. Asking for assistance has been very difficult, but it makes my loved ones happy to do it, so the only person that has a problem with it is me. :-)

James said...

I self-diagnosed last year at the age of 35.

Doing so has brought about a good deal of internal upheaval but has been hugely positive above all - it really has explained a huge amount of why I am the way I am, and why nothing and no-one else ever quite makes sense to me.

As you suggest is often the case Gavin, I too have pondered a lot on whether I would have liked to find out earlier in life. I've reached much the same conclusions.

If I'd know earlier I would have spent much less time particularly in my adult life pretending to be someone I'm not and that I never can be be - the type of person my peers manage to be with ease. I have strived for goals that are unachievable.

However, I also feel quite strongly that if I had been diagnosed as a child I may not be where I am now. I've generally succeeded in getting on in life despite it being a confusing struggle. I have a wife, two kids, a house, two cars and a job. Would I have all of those if the Asperger's label had followed me since childhood? Quite possibly not.

Asperger's kind of discovered me. I'd flirted around it about five years ago, but without thinking it applied to me. Perhaps the time wasn't right then, but last year it finally was. This time the label did stick, and it's opened up a world of acceptance and explanation to me.

James

Angela said...

What a great article! Thank you for sharing your perspective on such an important topic.

Jason said...

I think not telling your child he has this diagnosis is doing him a great disservice. I was diagnosed with Autism at age four.. Only problem with that?? I was not told about the diagnosis until AGE 32!! When my mother told me about this, she said that the symptoms "went away" by age 5, and I know that's not true. They never completely went away.

So I went through my childhood and teenage years and early adulthood not knowing what was wrong with me. I knew I was different, but I didn't know why. My family just chose to pretend like there was nothing wrong with me. I was picked on so much by other kids, and looked at as some kind of freak. I was not given any guidance whatsoever about how to interact with other people.. how to read body language.. etc.

Because of all the research I've done, I now know I have Asperger syndrome. I'm doing pretty well now at age 37, but I always wonder.. what if I had known about this sooner?? Could I have gotten help with this?

Larisa said...

i agree james. i was diagnosed as PDD in my teens but never received any therapy and didnt know what that meant until my son's diagnosis over these last few years. it now explains a lot about myself, type of career etc. but if i had known what that label meant all these years i probably wouldnt have worked so hard to achieve what i have achieved. som epeople say WOW! at me, but for me, there is always more that can be accomplished... never enough! i feel as if my son is overwhelmed with his diagnosis just as if he were to have braces on his legs like forrest gump.
i guess i see the label (being taught what it meant as an adult) as a big 'so what' or an explanation/justification for just understanding complex things with ease, and being an introvert. my son feels like a cripple. in a sense i am kind of happy that he has it - he will really succeed in what he puts his mind to and achieve a lot! as a mother though, it is the worst ache to watch your child go through the emotional social teenager stuff. and id like to say it gets better with age, but i see many adults in their 30s, 40s and 50s who still act like teens.
we go for tons of social therapy to aleviate some of this stress so he will succeed all around as an adult.

Rachel said...

I agree with Jason here. I think a person should be told that they have an AS diagnosis, whether they are in the "so what?" phase or in the teen/young adult phase.

Although we Aspies lack social intuition, we are not without basic intuition. I know when something isn't right. I know when things aren't adding up. I know when someone isn't telling me the whole story. To keep an AS diagnosis from an Aspie, who has enough difficulty parsing the world, could mean even greater confusion, loss of self-esteem, and mistrust of other people.

I have a teenage daughter, I couldn't imagine keeping anything that important from her. She is NT, but were she to receive any diagnosis of any kind, I would share it with her in a supportive, loving way.

Gavin Bollard said...

I rather doubt that if I had a teenage or young adult aspie if I'd be able to keep it secret. I'd feel like I'd want to give them all the information that I could.

I guess my point isn't "don't tell", but rather; "tell as young as you can and make it a normal part of their lives".

If you only find out during the "danger years", then you probably should tell immediately. Just be ready and watching for signs of rejection and depression.

Regardless of when you tell. The how of it doesn't change. It must be painted as a positive, not a negative.

During the danger years though, I'd be very careful about who else you tell. After all, aside from teachers (who unfortunately often let the class know anyway), it should be up to the aspie to decide who can know and who shouldn't.

In particular, at dangerous ages, parents should not tell their friends or their children's friends. Even relatives have limits on what they need to be told.

Michelle said...

My son was diagnosed at 12. He does use 'aspergers' as an excuse for everything but felt a huge sense of relief of 'what it was' when he found out. Hopefully with the therapy and his mum (ME) educating myself HOW to parent a young man with AS can help him to feel confident and deal with life. We have so much to read on your blog now!!

Dragonella said...

I have to say, I was reciently diagnosed as having aspergers, and i am in my tean years, I am 17. I didn't have much of a negative impact. I knew something was different about me and thats frustrated me, knowing about aspergers, kinda explained it, it gave me an answer to the question: "why am i like this?" now that I know I have aspergers, I tend to deal with it better...

Larisa said...

thats awesome dragonella!
how do you "deal with it better"? i am asking so i can share this with my son, age 14.
i think my son has a hard time with it because A. he already feels different and B. now a label is proof that he is different and C. is very worrisome that he will never 'fit in'.

Dragonella said...

Larisa: I think his problem is trying to fit in... yeah, he is different than "normal" but define normal... With me, I read a lot about aspergers so I would have a very good understanding of what exactly it is. Knowing about it, helped me understand myself, and they way I think. Everyone is different, and the most important thing is to find out how you as an individual thinks and reacts to other influences. I thought I was normal, but weird, and thought my mind worked like evryone else, and I wondered why I didn't react the way other people did, now I know, and I know why I react this way.
Your son feels this way probably because he is insecure, the best thing you can do is treat it like a good thing, and make him see the good side of being aspie. Yes, a lable is proof that he is different, but different isn't bad. He probably wants to fit in because he doesn't know anyone like him, anyone who thinks the same way (thats not related to him, and is around the same age range) Having Mom understand you is one thing, but other people, its different... probably becasue mom tends to be biast... and he probably wants to fit in because he feels alone, and apart from others. I was the same way, I hated being abused at school and everywhere else. when I found I hade aspergers, I tried to find friends that I could relate to, that also had aspergers, I found my present boyfriend, and together, we have worked out our differences, and understand eachother. If I were you, I would try to get him friends that also had aspergers, (preferably ones that could deal with it and would have a positive impact on him) Its good to have friends that are both NT and aspie. but having aspie friends will definately boost his confidence, which it seems like he needs a lot more of it than he has...

If you want, (and this is just a suggestion, you don't have to go through if you are not comfortable) I could give you my email address and phone number and he could email me or call and chat, and I could also introduce him to my boyfriend, who is a real sweetheart. Looks like your son needs to talk with someone who is not related to him, and also has aspergers and is in sort of the same age range. It would really help his confidence if he got to be friends with other aspies.

and how I "deal with it better" is basically when I found I had aspergers, I found friends who are aspies, and they helped me boost my self confidence. He is different, but he needs to see the difference as a good thing, not a bad lable that makes him somehow worse than others. Being aspie is no excuse to do badly in school. Infact, its a good reason to to better in school. It is definately not a stopper in life, Aspergers opens up new doors in life to all kinds of possibilities.

Jay said...

I disagree with the idea of simply withholding information away from an aspie, regardless of the age. I'm 15, and in all honesty life would absolutely SUCK if I had never figured out that I had Aspergers (My mom never told me, and wasn't planning to. Luckily, I found out that it was the reason I was in special education when I was a staff aide). And at first it was a feeling of "hey, that's pretty cool". And I do admit that not much further along, I did have bouts of depression that I had difficulty controlling. But once I got over it, I finally stopped going "Why has this curse come onto me!?" and started saying "What are the symptoms of Aspergers?" After a week of research, I compiled a list of things.

With this list, I began the start of my journey to finally be able to become more social, as it has been one of the few things that has ever and continues to ever make me truly happy on the inside. But if I never knew I had Aspergers, I would have never created such a list, and without a list of things that are wrong about me, there's nothing I can do to improve.

I doubt I'm the only one like that, and I almost felt a sense of betrayal once I found out my mom didn't tell me. She even told my brother!

Point still being, hiding Aspergers, regardless of age, does not seem like a good idea to me.

Damo said...

Guys, thank you. I'm new to all this but it is a major sense of relief to assign a name to my "idiosyncracies." We're working through the definitive yes but I am pidgeonholing myself the more we explore. C'est la vie.
So, is the label an excuse? not really, its a tag, an assigned value.
Does it help? it explains an awful lot.
Am I special? no. I am me.
So as an adult (34), I have attained a strong sense of self but the social "rules of engagement" still baffle me.
As for when to tell somone, thats a personal choice and the observer needs to assess the person as to how strong their character is otherwuse they may use it an an excuse and not fully appreciate themselves. I'm leaning more to the older years when we get a "feel" for what is "not quite right" and we have a chance to develop our intrinsic character without being special. We're normal people that just see the world a little different. I am a practicing civil engineer that has also practiced in the realms of structural engineering, drainage engineering, floodplain management, construction engineering, highway design, traffic engineering and now subdivision design and assessment.

Guys yer all on the right track. go with your instincts.

Gavin Bollard said...

Wow, we have a quite a few people who were told during those danger years who;

a. Obviously benefited from being told. (or could have benefited).

b. Showed Negative symptoms and overcame them.

It's pretty clear that you shouldn't withhold a diagnosis from your aspie. Sure, there may be negative effects at some ages but as a parent, you need to deal with them.

Laura said...

I was diagnosed with Non-verbal learning disability with autistic tendencies at age 4 (in 1990) and Asperger syndrome when I was 13 (in late 1998). I had known I was different for several years and was relieved when I finally had an explanation. I wished my family would have known about Asperger sydrome when I was in grade 4 and starting to question my differences from my peers. As a young adult, I recognize AS as a unique profile of strengths and weaknesses. I outperform my university peers in some areas (e.g. in many academic situations) but need extra help in other areas such as group conversation skills.

aspmom said...

Gavin,

I've just started on the Asperger's journey and began a blog about being a mom and wife to aspies. I linked to your blog because I find your posts so helpful. Thanks for sharing your thoughts!

M said...

i was diagnosed three years ago, age of thirty. i basically denied it for a year, then went through a long phase of bitterness. i think the goal, for me, is to learn to be neutral about it.

however...i did read a lot of adult accounts at the time; the vast majority of people seemed to be relieved. like, "whew, that explains a lot". my reaction was definitely in the minority, which is a good thing.

Anonymous said...

Why on Earth try to tell people that they're social retards? Leave them alone and let them live their lives. You can pathologize yourself, but don't impose it on someone else. Besides, you don't know what someone's thinking. Maybe they know that something's weird or rude or whatever and that's why they're doing it.

J

Sun said...

I'm a late life Aspie DX, and I would have MUCH rather known earlier. Waiting due to age related angst is more harmful. If I had known then what I know now, I would have been saved massive amounts of depression and heartache.

Devyn said...

I was in 6th grade when I was diagnosed, right into beginning middle school. But the diagnosis was more of relief than despair. At my previous school, I had no friends. I made a few "best" friends, but that didn't compare to the popular kids who had everyone on their side. Then we moved, and I had trouble making new friends for two years. I ended up befriending three kids who had asperger's in 6th grade. I wasn't worried when I was told, but relieved. And once I had heard of some famous people who had/have it, my grades immeadiatlety went up. It will always depend on the person when it comes to telling them. And it depends on what happens afterwards. I was convinced I could do better than Einstein in my life, because I could be better in school, he was very poor at school.

Kylyssa Shay said...

I was diagnosed a few years ago during therapy for PTSD, anxiety, and depression. I'm 39 now. It was a relief to finally have a reason for why I've always been an outsider and just never "gotten" so many things other people seem to know instinctively.

I think I would have greatly benefited from knowing earlier. If my parents had known, I probably could have gotten treatment and counseling and might have avoided being homeless in my youth.

I think honesty is a better policy than lying, even by omission. I don't think knowing about an Asperger's diagnosis causes the depression or angst or such things - I think having Asperger's Syndrome does. I had all the feelings of isolation and otherness and depression without knowing what I had. The only thing I knew was that I was some kind of freak. I think it would have been good to know that I had a syndrome, an illness of sorts rather to just have a peer and self created label of freak.

Since getting diagnosed, I've felt so much better about myself. I've always felt bad that I was a freak, a weirdo, a nerd but finding out it was AS puts it into perspective. It's like having diabetes - I wouldn't hate myself for having diabetes if I did.

Avocado Baby said...

I am a 41 year old female who has been researching this subject for months. I am certainly suffering from something whether it be aspergers or whatever, I assumed, until recently, I was just insane! Now I know there are other women out there feeling the same. My only trouble is I have spent years living a total lie, nobody is ever going to believe me. I upset people constantly and I don't know what I am supposed to have done. Half my family don't speak to me. Just found out one of my husband's sisters (married 19 years) can't stand me and thinks im stuck up. In fact his family don't have a lot to do with me. I have to say I do have some close friends who seem to stick by me through thick and thin. Even when I try hard I still don't get it right. I hate hate hate social events, I hate hate hate talking on the phone, I hate hate hate stupid small talk, I would rather not talk. When I do talk it's utter rubbish. Sometimes I physically can't talk for days. Help I could go on for day.

Anonymous said...

As an adult NT female with a close friend who is most likely an Aspie male, is it my place to tell him that he may have AS? Our NT/AS differences have affected our relationship in many ways and I try to make compromises but it's hard sometimes. I feel it would help him to know why he is different but I am also afraid he might "kill the messenger" as other friends have cautioned.

Anonymous said...

I haven't been diagnosed and I don't see it being worth the expense and trouble.

Several years ago, I was talking to someone who works with Autistic children. In the middle of our conversation, he asked me if I am Autistic. That really caught me by surprise.

Lately I have been reading more about it and a great many of the descriptions of people with Asperger's or Autism describe me quite accurately.

Another thing I really identified with was the main male actor in the movie Mozart and the Whale, especially when he was ready to go out on Halloween and just couldn't leave his apartment.

Every Sunday I make definite plans to go to church, but can't force myself to go. The same goes for funerals of non-family members.

Every July there is a major barbecue cookoff and fundraising party on a friend's ranch. Every year I have every intention to go. On several occasions I got in my car and drove out that way but turned around and came back about half way to the ranch.

Only once have I ever actually made it to the annual cookoff. I managed to stay about two hours before I felt an enormous compulsion to leave. In comparison, my younger brother goes to the ranch about three days early and returns the afternoon after the cookoff.

Until recently, I really had no clue why I had so much trouble to convince myself to go to such events and usually missed them. I just don't want to have to deal with everyone, especially since the main effect is usually to reinforce in their mind that I'm very different than them even if I did grow up with most of the people there.

Anonymous said...

Hummmm. From reading a few of your posts on diagnosis, you seem to be saying a diagnosis is useless and counterproductive. I couldn't disagree more. In fact I think you do a massive disservice to Aspies, their parents and family.

Identifying what you're dealing with is always the first step in treatment. How can you know how to approach it if you don't know what "it" is????

And like any thing else in life (finding out you're adopted, your dad isn't really your dad, whatever), even finding out in adulthood may ANSWER unspoken subconscious questions you've always had.

For the life of me, I can't imagine why you'd be AGAINST anyone getting a diagnosis, or seeking one, but I'm eternally grateful you're not a doctor!

My 15 year old grandson just got diagnosed, after many years of having Kaiser tell us "it's nothing, there's nothing wrong with him." He had to have a major depressive episode and be put on a 72 hour hold in order to get care and to finally find out what was really wrong with him. At last NOW we know, and can find ways to help him. And for him, it's better he knows it's not that he's "stupid", it's that we need to find a different way for him to learn.

Again...so glad you're not a doctor. I skim the comments and all I see are people singing your praises. Seriously....WTF?

Gavin Bollard said...

@Anonymous,

I'm not sure what exactly you've been reading but I'm well and truly in favour of diagnosis and labels.

This whole post was about WHEN the best time to discuss the label with your child is - and my general answer was; as early as possible, before it matters.

A Diagnosis and Label is a very important starting point for self-understanding.

They become less important as you get older though and if you haven't got one by the time you're over 18, you've missed the important years where it can make a real difference.

By the time you're middle aged, you know who you are and although a label (even a self-applied one) can help you understand yourself better, a formal diagnosis doesn't offer as much benefit (particularly when offset against the cost).

The one thing that you need to keep in mind about labels is that they're generalisations. Everyone is different. A label can be a great guideline but it never 100% covers a child's capabilities.

That's why they say, "If you've met one child with autism, you've met ONE child with autism."

Anonymous said...

This looks like an old thread, but I'm in need of some insight. My 21 year old little brother just got diagnosed with Asperger's, and my mother told me she's not going to tell him. The doctor they're working with told her that it's just a label and it will make him feel like a failure. My first thoughts were that this is not just a label. It's not just a word. This is a neurobiological difference. It's a medical diagnosis.

A diagnosis that I felt, upon hearing it, immense relief and guilt. Relief that my brother's struggles had a root, a cause that could be mitigated. Guilt that I have been so angry at him for so many years. Angry for not respecting my parents and eroding their relationship. Isn't my brother entitled to the same sense of relief? Who are we to make that decision for him? The name will not define his entire being but I imagine it would serve to provide some additional information for self-understanding and compassion. I imagine he has been confused and depressed all these years because he continued to fail again and again for no obvious reason. I want him to feel some relief in knowing his differences come from a group of traits that he was born with.

I understand that reasonable professionals do indeed disagree about whether to withhold a diagnosis from a child with Asperger Syndrome--there is no confusion, however, regarding the moral and legal obligation to inform an adult of a medical diagnosis.

Should I tell him myself?

Gavin Bollard said...

Did I read that right? 21 Years old?

Absolutely No reason why he should not know his diagnosis -- and in fact I think it may be "illegal" for his mother to know and him not to know.

Think of the Ugly Duckling story.

The duckling knew he was different and was sad living his life out as a duck. He was so happy to discover that he wasn't a duck but a swan. There were others like him.

You can't deny your brother the opportunity to find like-minded friends.