daughter with aspergers struggling with the label

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my 15year old daughter wants rid of her aspergers label , shes realy struggling with it , she says she would rather be labeled with a mental illness than aspergers , we try and encourage her to be proud to be an aspie , shes high functioning , she was diagnosed at 8 years old , she thinks all her tics,ocd behaviours, stress levels, meltdowns, aggression , routines, extreme social awkwardness is all part of being a teenager and nothing to do with aspergers , i dont kno if shes embarressed, she doesnt tell anyone she has as , we have offered to take her to doctors so she can discuss how she feels but she wont even look or speak to a doctor .

i would be grateful for any advice anyone could give

Welcome to Wrong Planet!

When did she start feeling this way? She was diagnosed at age 8, so she wasn't at teen then. Does she think she got rid of the symptoms and they came again as she became a teen?

I'm thinking there is something behind this. Did something happen? Is she being treated wrongly? Or is she just sick of working hard trying to fit in?

My 13 year old has been this way, off and on. I posted about it here recently, and some wise parents and adults on the spectrum reassured me that this was really normal. Teenagers want to fit in to the point of being invisible. I think this may be truer of girls on the spectrum, especially when their social skills and interest in making friends are strong. My dd was dx just before age 12, in middle school, and things have been up and down with her. Like your dd, she doesn't seem to associate any social struggles with her HFA. She is social, but would like to have more friends than she does and sometimes gets really confused and upset with the behaviour of the "mean girls". She is lucky enough to have several older siblings who are not only role models but clearly show that drama is part of normal teen development, and they have also reminded me sometimes that her reactions are actually normal and may not be associated entirely with the label. We have a history of depression and ADD in the family and she doesn't mind either of those labels as much. Does your daughter have any academic / learning difficulties? Mine does, and that is one way I have been able to talk to her about the way her brain is wired. I have given fairly technical explanations about executive functions, autistic inertia, systematic thinking etc. and she has really responded to that, especially when I am positive about her gifts. Oh, and another thing I learned is that she didn't like the "gross" label of "a*s burgers."
J.

tell her its scd

she does however have some very valid points

the maturity of brain connectivity to the OFC is a lifelong process. With peaks in infancy and teenage years.

i agree with her. Sod the label. Its useless.

It sounds like she might be struggling with the idea that it's permanent more than the label itself.
I can't remember how I dealt with that other than eventually just taking the attitude that this is the brain I have, and I can either cry about it or try to work with it as well as I could.

Personally I decided to believe in neuroplasticity and epigenetics

rather than genetics and of the fixed rigid brain models that are outdated

Let her think that. At least she is seeing herself as normal and not any different.


Any reason why she hates the AS label? Is she mild by any chance? Is she not a textbook case?

It can be confusing to understand how it's so different when you do it. I am the same way. For one I know everyone hates surprises but when I do so too, oh no it's the AS and my husband tells me it's how I react to it. I also tell him everyone doesn't like change and they get over it in two minutes and my husband tells me but I say it's kids that get over it in two minutes, I am an adult and I still do it like a child and then get over it. I do the same thing everyday, computer and my defense is lot of people do computer, lot of people get obsessed with it because they get "addicted" to Facebook and computer gaming and do it all day long, same as video games. So how is it AS when I do it? I feel the same way about anxiety and OCD.

Perhaps this is what's happening with your daughter. She is recognizing what happens to her happens to other teens also and she is just confused. It feels like you are being picked on when your behaviors get picked apart being told it's due to a disability you have when you see everyone else does it too and they are not labeled. She could have also realized she isn't any different than her peers despite having AS. I was at that age too when I started to think that and I was told it meant I was starting to cope with it.

Sometimes I think mild AS isn't even an impairment because it doesn't really limit us or stop us. We just have to work harder is all and we learn to deal with our symptoms better so we aren't really impaired by it when we cope with them. I think the diagnoses exists for education because of how we learn and how our minds work and that makes a difference, same as how people have to communicate with us because we also take things literal and process information differently and the label is just there to help he rest of the world understand that about us. Plus better understanding from your partner and family so your life is easier. So the reason for the label when you're mild.

It could also be the stigma, the sandy shooting for example and she wants to get rid of that label because of that stigma. Also don't forget the incident where a 15 year old aspie teen charged after a cop with a knife in his hand and got shot. I sometimes hope if I don't have autism anymore, I wouldn't get offended anymore when they try and attach psychotic behaviors to autism. if she fails to meet the new ASD criteria, tell her she is no longer autistic so that would mean she doesn't have AS anymore. Technically that would mean she never had it to begin with.

shes been struggling with the label for a while she says shes grown out of a lot of the the things she struggled with when she was first diagnosed which is true but new struggles always took there place and thats the way its been over the years, she struggles a lot with sensory issues as well , she doesnt like people and doesnt hide the fact , and breaking of routines is a nightmare for the whole house, ive asked her if anyone has treated her bad but she says no.
shes unreasonable about any discussions at all about it , shes adamant shes getting the diagnosis removed and thats that .
shes very clever theres no learning difficulties at all.

for league girl
reading the last part of your post i just remembered over the last couple of weeks she was talking about the boy who shot the kids in school and she was horrified that somewhere mentioned he was an aspie and this morning when we where talking about the label she said aspergers was a personality disorder and i assured her it wasnt maybe thats what shes thinking when shes saying the label will hold her back,
im going to try and talk to her about it , i just love her millions and its makes me ache when shes struggling and is so upset about all this stuff x

Part of it may be that girls seem to have a very strong need to affirmatively break from anything they associate with mom. It is a normal step in growing up that they pass through and leave behind completely in their twenties. So a part could simply be that label is something you, as parents, acquired for her, and by that fact alone it must be wrong.

If that is playing into it, it could help to let her know that you might consider allowing her to talk to her doctor to have it reconsidered. Perhaps what she needs to feel is some sense of control about who she is, more than she actually needs to lose the label.

OP maybe tell her that it is both a part of being a teenager and because she's autistic? There's a lot of chaos going on in both neurodiverse folks and neurotypicals heads at that age, and we go through different live-stages too. We're not the perpetual "autistic child" that many organizations speak of.
Also if she's afraid of the stigma the label presents, tell her that she has no obligations whatsoever to be "out" to anyone (except maybe officials)? Or talk about how stereotypes and prejudices are presented in society, and how they're incorrect.
You could offer to have her re-tested, but what happens if she loses her diagnosis but still needs resources? And how would she react if the would get the same results again, if she thinks it is such a bad thing?

You wouldn't feel scared for your own sake, that's true. But if you still were a good person with critical thinking skills you would be upset by it anyway. Like how people outside of an oppressed group can still understand that oppression is wrong, even though they can never have the full lived experience of it.

Then tell her about some of the awesome people that have AS. It's simple but it might just work.

What has helped us immensely is my son making friends with other kids who he's met in AS social skills groups. It doesn't happen often - most often he views the other kids in these groups as "annoying" - but every once in a while there will be a kid who is really, really smart (our experience has found they are typically computer-savvy kids) and who also is very gentle. We have been very lucky in this regard, and were luckier still that one of these kids was in his very first social skills group.

The problem with solely connecting AS to "magic" aspies that are out there (like Heather Kuzmich, Alexis Wineman, Darryl Hannah, or Satoshi Tajiri, or sometimes people include people who died before the diagnosis was available, like Einstein or Tesla or Michelangelo) is that it can set up an expectation in kids that they're supposed to in some way be magical and change the world. I think it's helpful to know that there are hyper-successful Aspies out there, but to make sure that you also point out ordinary people your child likes who have it (hopefully if you aren't accessing resources already, you can find a Meetup or a support group where you can find some other kids with similar issues.)

That too for me, to an extent. I didn't mean that I believed that my brain couldn't be worked with, just that the raw materials weren't going to change to something else just by wishing.

But they're just famous, they're not smart (with some exceptions...) I thought the pressure was about thinking every autistic kid is/should be a savant, not on becoming famous. Though it is nice to have some good stereotypes for once. Maybe explaining that it is hard to show how successful that-boss-in-town-that-is-really-rich-and-an-aspie is as he's not famous, but that we are found in many walks of life, and downplay the celebrity angle.

I don't have a problem with showing these celebrity lists, as long as you don't stop there: in terms of expectations on themselves, I don't think kids can really distinguish between "savant" and "celebrity." If you can find some real-world examples of ordinary people (I guess adults would do as well as kids, but if you've got a kid getting services for autism they more than likely are going to run into other kids first.)