Asperger's diagnosis: tell or not?

[Maj. Bloodnok]

Hello all:

 

My oldest daughter is 13.  She's been treated for ADHD, anxiety and OCD since she was six, all by the same psychiatrist.  Last week, she went to see a new psychiatrist, who promptly diagnosed her with Asperger's.  He didn't tell my daughter, but he did tell my wife.  My wife took the news pretty hard: this means that two of our three kids are officially autistic, instead of just one. 

 

My wife doesn't want to tell my daughter about the diagnosis for now, for fear that she'll use it as a crutch. (she already does this with her ADHD sometimes.)  I want to tell her, so she has a better handle on how her brain works and how to interact with the world.

 

Both my wife and I have learning disabilities, diagnosed in childhood.  My wife's parents told her, and implied that she was stupid and wouldn't accomplish as much as her siblings.  My parents did not tell me for several years, which left me to white-knuckle my way through high school math and feel like a complete idiot.  Neither one of us wants our daughter to feel stupid, worthless, crazy or broken.  We just don't agree on what to do.

 

So, for those with kids on the spectrum, as well as those on the spectrum themselves: what do you think?  Should we tell her or not?

[Raincloak]

By now your daughter has undoubtedly figured out she's "different," if not exactly how.  I was a "different" kid and went to occasional shrinks for it, but never was told of any diagnosis until I was in my teens, when it was just a bit of bad news that didn't help me at all.

 

Personally I'm not real big on "labeling" subtle things (as opposed to real obvious things, like bipolar disorder or schizophrenia).  I happen to think it does more harm than good.  People often use labels to set lower expectations.  They expect and look for problems where problems may not exist.  They excuse behaviors that should be corrected.  Sometimes a labeled disorder can bite you if your medical record falls into the wrong hands.  

 

On the flip side, some people feel better with a label, because they feel it justifies problems they are having.  It can also lead to having the problem treated.  The question is: does naming a problem increase or decrease the chances of actually solving that problem?  Putting a name to problems is sometimes the first step to solving them.  But sometimes people prefer to blame all their troubles on the named problem and not actually do anything about it.  You know your daughter better than us, so that's up to you to decide.

 

either way, you should explain to your daughter that her medical history is her private secret to tell or not tell, as she chooses.  She should be discreet in deciding with whom to share the info.

 

 

With that said: since the kid is diagnosed and seeing doctors already, I would find a diagnosis of Asperger's much more enlightening than "OCD, ADHD and anxiety."  Both can explain the same symptoms, but the former is less of a disorder and more of a neurological quirk.  It's also just one diagnosis, instead of three, and unlike the latter it doesn't tend to require medication.  It doesn't sound as scary.

 

(fwiw, I don't consider Asperger's true autism.  Your wife should relax.  Even if the kid is autistic, it's nobody's fault, but Asperger's just makes people a little weird, it doesn't doom them to a limited life.  There is a streak of some mental quirk in my family that might, in the hands of a psychiatrist, be called Asperger's.  It could also be called anxiety, depression, or just being a smart nerd in a world full of dumb sheep.  To us, it simply means we need to pay attention to our habits and engage our intelligence, our will, and our loved ones in keeping us sane and healthy.  Some of us have opted for an antidepressant, some have not.  By associating mostly with fellow nerds, and learning strategies to cope politely with "normals" when necessary, we've been reasonably happy, albeit with the same occasional crashed grade or sense of loneliness, like anyone else.)

 

It should also be noted that psychiatrists have a tendency to over-medicalize.  They're trained to do it.  You might consider taking your daughter to a counselor or psychologist, to see if that person has a different opinion.

[hawser]

I suggest that you tell your daughter about it. I also have a nephew who has aspergers, his parents told him about it. and you know what he did? he googled it and read everything about aspergers. Now he knows how to handle things and how to interact with the people around him. 

 

You are right, it's better to tell your daughter about it so she has a better handle on how her brain works and how to interact with the world.

[Thrillho]

We've always been honest with our son, after he finally FINALLY got a proper diagnosis for assymetrical learning disability and Asperger's, borderline autism, when he was 12. I don't know exactly where they draw the lines, but he was apparently the highest deviation from the 'standard' big-four verbal, non-verbal, spatial/motor and social the doctor has ever seen in someone who WASN'T autistic, but he is far too in touch with his emotions for that kind of diagnosis.  

 

The difficulty is explaining it and phrasing it not as "here's all the ways you're broken", which he sort of leapt to, but rather "here's all the ways you're different, and here's all the ways your strengths can be capitalized upon, knowing that some things may always be more difficult for you".  We used a lot of automotive metaphors, which he took to fairly well.  He knows he's different, he knows his reactions to things aren't always what he SHOULD be feeling, and he is slowly getting better at just... pausing when he's overwhelmed.  

 

Unfortunately, he's in the biggest high school in town right now and most of his teachers seem to enjoy screwing with him.  I would definitely talk to your child, if only to help warn and prepare them for all the ways the world is not built for teenagers with this kind of difficulty. It's a horrible thing to walk into blind (happened to me, and I'm watching it happen way worse to my son). 

[Kung Fu Girl]

Tell your daughter.  Teach her how she is different.  She needs that understanding so she can develop strategies for interacting with "neurotypicals".  I find "labels" helpful.  Without the label it is often difficult to figure out why things aren't going the way you expect, reactions seem random and devoid of logic and reason.  With the label you can develop and practice strategies, and learn from your mistakes.

[Defining]

At the end of the day, it's going to be whatever you think is best. Though I definitely understand worrying about your child using the label as a crutch.

 

Idea for you: what if, instead of focusing on any diagnosis (which you may still choose to discuss with your family, simply to inform their challenges), you created systems with your children to work on their weaknesses? EG. Ask her to tell you something she finds difficult, like waiting for someone else to finish speaking (ie. interrupting), or understanding why people aren't interested in the same subjects she is, or staying focused in class. Then, you can brainstorm ideas of how to improve. Not all the ideas will be good ideas, but that's part of the learning - how to come up with ideas, try them, and figure out what works. So, she can try asking to go to the washroom and then do 20 jumping jacks if she's having difficulty sitting still in class. Or practice active listening when she wants to interrupt. And when you praise your children for their efforts (as opposed to their success, which the rest of the world will focus on), you're teaching them that the growth, the improvement, the process is laudable, and in many ways most important.

 

The reason I like these kinds of approaches is because of how many different lessons it teaches - you have to pay attention to your own behaviour to figure out what's not working, you need to brainstorm or even research solutions, you need to try different ideas before finding systems and strategies that work, and you learn that it's ok to be wrong so long as you're working to improve, and it finally shows your children that they CAN improve if they put in the work. These are such important skills, especially for those who are neuroatypical. I've never been diagnosed with any particular condition like ADHD or Aspergers, but my whole family has different traits that are similar to them in varying levels. It's taken me time as an adult to start to adopt a growth mindset, and to structure my life into systems, habits, and practiced skills. But I think it could be very helpful to teach ALL your children how to do this from a young age.

 

Just my 2c, best wishes to you and your family!