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My child has Asperger's syndrome. She is high-grade enough that she has been going through school and she speaks and sort of makes eye-contact, but it is clear to her and everyone that she is 'different', and she needs help.
She has been asking for some time "what is wrong with me?"
She is 13. Teenage socialisation and sexualisation are next...
How do I tell her what it means to have AS?
She can discern that she's different from other kids her age. She's expressing this in a way that's heartbreaking for me to even read, let alone to deal with as a parent. As hard as it is, the time has come to validate her suspicions. If she didn't need some sort of validation, she wouldn't be asking you. At the risk of sounding chiché-ish, it's time for her to live with Autism Spectrum Disorder as part of who she is and not as something to be afraid of. Be aware, though, that this is a difficult time for kids to hear that they are different.
There are famous and successful people with ASD, for example, look at the immense relief of animal suffering thanks to Temple Grandin. Susan Boyle has blessed the world with her beautiful voice. (If you've never seen her Britain's Got Talent debut, you really should; it's a bit painful but it's a huge -and tear-inducing - wake-up call.) There is so much awareness of and support for ASD that the diagnosis no longer carries the stigma it once did, and help dealing with issues such as this one is not difficult to find.
If you're not familiar with Autisticadvocacy.org, please visit the site. There is a wealth of information for families, including for adolescents. I don't know what kind of therapy she's been receiving, but there is a ton of evidence that treatment helps with social skills, etc. The journal Autism may be available by request at your library. It's a great source of information, including dealing with issues such as this one.
[T]he possibility of problems occurring is more likely when someone is not told about their disability,sup>* and given the support they need... Not understanding others or social situations for many leads to poor interactions with others and results in ridicule and isolation... You can look for the presence of certain signs that the child is ready for information. Some children will actually ask, “What is wrong with me?,” “Why can’t I be like everybody else?,” “Why can’t I _____?,” or even “What is wrong with everyone?” These types of questions are certainly a clear indication that they need some information about their diagnosis. - Getting Started: Introducing Your Child to His or Her Diagnosis of Autism or Asperger Syndrome
I would recommend you read the source above.
You may want to break the information up into parts, and tell your child that this is going to be ongoing dialogue. (If your child had a newly diagnosed cardiac problem, wouldn't this also be true?) What is your daughter's preferred learning style? If she likes books, many are available for you and that you might read a book together, such as (among others) Freaks, Geeks & Asperger Syndrome: A User Guide to Adolescence written by a 13 year old male with Asperger’s, who was able to address problems kids with this diagnosis commonly face. If she likes movies and videos, there's no shortage of these either. The talk needs to come first, though, before the exploration.
*Not my words.
These aren't my usual scholarly-type recommendations, but they address your question.
Top 10 Autism Websites Recommended by Parents
Parent Tips: "You Have Autism."
Your child has autism. How (and when) do you tell him?
10 Guidelines for Telling Your Child about ASD
The first important thing is obviously to move the tone of the conversation from "What is wrong with me?" to "In what ways am I different from neurotypical people?". The latter then is not something where you tell her, but rather where you assist her in figuring out the answer (and listen to what she says about it).
It may already be comforting to her to talk about common characteristics of people on the autism spectrum, so that she can see that some things she currently considers as she being weird are perfectly normal (but just not for neurotypical people).
A typical example of the "just different" aspects is eye contact. Painting with a broad brush, neurotypicals like eye contact and people on the spectrum do not much care about it. There is nothing intrinsically virtuous about eye contact. That your daughter is actively trying to make eye contact is thus not her coping with a disability, but her going out of her way to make others comfortable - a very polite and considerate thing to do, which she should be proud of!
To make sure that "just different" doesn't become a euphemism. it is important to also be honest about inherent disadvantages. For example, if her sensor overload threshold is sufficiently low for it to be triggered in everyday situations, it is a real problem and deserving of a coping strategy. It is not a good reason for shame though. If it just means that she couldn't stand being in a nightclub, then it may suffice for her to understand that tropes like "teenagers love going to nightclubs" are not prescriptive, and that there are plenty of other ways to have a fulfilling teenagerhood.
Following from that last thought, for both you and her it will be helpful to keep in mind that most representations in the media as well as advice texts about how humans function are concerned with neurotypical humans only. Thus, both of you will need to discern carefully what is and what is not applicable to her. This is not her fault for "not adhering to factory specifications", but for those representations etc to not cover the true variety of humans.
Finally, let me repeat the point made in several comments that there is a significant overlap between "typical characteristics of mathematicians and computer science people" and "typical characteristics of people on the autism spectrum". This contributes to a culture I'd consider to be rather more comfortable to people on the spectrum than the mainstream. Even if this subjects aren't particularly her thing, just knowing of this might help her in accepting herself as she is.
I think the thing is, don't worry too much about labels, ie whether your daughter understands herself that she 'is' or 'isn't' aspergers. Just try to assist your daughter with their specific needs
How she sees herself in terms of labels isn't what matters (I think), but rather how she understands her own needs. For instance, if she has trouble interacting with people, is that because she has trouble understanding and reading peoples emotions? If thats the case, then maybe approach the issue as discussion on peoples emotions, and explanations of how those work, helping her understand how to read them. And if she cannot grasp how to read or understand others' emotions, then help her undrestand that those are aspects other people communicate by that she cannot see
So, its not so important what you call her, whether you tell her shes Aspergers or not, but rather the specific situation
What can go wrong, though if she is aspergers she might not pick it up, is if you have any personal notions of stigmatization coming through in that
I can kinda relate. I am somewhat on the autistic spectrum. However, I did not find out until I was in my late twenties and that my mom (and others) considered me so. But I do appreciate that no one really made a big deal out of it or whatnot
