Hello all. New to this forum. My daughter (14) has recently been diagnosed with autism. I’m looking for guidance in how to tell her

[Sweetpea23]

My daughter was recently diagnosed with autism. She is 14 and what you would consider ‘high functioning’ although has had significant problems over the years. Obviously she knows there is something as she has been involved in the meetings/appointments etc but has effectively shut off to any discussions whatsoever. She came to the final diagnosis but in her mind it was to put an end to all the appointments etc. She told me that if she came in to the final appointment then I was never to tell her the outcome and I basically was never to bring it up again. So, I have tried a couple of times to broach it and she shuts me down.

We are now at the point that her teachers are aware but she is not (although she probably is deep down). I just wondered if anyone had any advice on how best to tell her. She is very conscious of her ‘image’ and doesn’t want to be different in any way. I feel this will be the key to understanding herself better but I don’t want to get it wrong! Many thanks

 

[Hypnalis]

If you've been open and honest about this, you can just wait it out.

If her expectation was that you wouldn't tell anyone else, you have a problem nobody else can resolve for you.

Note that you have to share what you've already told other people either way.

If she's acting and communicating based on the assumption that others don't know she's been diagnosed, she'll find out sooner or later. And learn that her entire "public persona" has been transparently false to some people.

 

[Rodafina]

Welcome to the forum @Sweetpea23.

It sounds like your daughter may just need some more time to adjust to the idea of acceptance. She's at a tough age to accept the idea of being different - even if she's always had this feeling, I can see how it could be tough to have an official diagnosis that is associated with "being different."

I don't think it's a bad thing to let her come to terms with this in her own time frame. I think it's okay to talk about autism in terms of the specific challenges she experiences rather than focus on the word autism and the diagnosis. It would be important for her to continue learning about herself, the challenges she faces, and healthy ways to manage any anxiety regardless of the terminology used.

Besides giving her teachers this knowledge, will she be getting any other supports? Do you expect her life to change in many ways specifically due to this diagnosis?

I might consider trying to get her involved with other autistic teens if you could find a way for her to do that.

 

[Sweetpea23]

Welcome to the forum @Sweetpea23.

It sounds like your daughter may just need some more time to adjust to the idea of acceptance. She's at a tough age to accept the idea of being different - even if she's always had this feeling, I can see how it could be tough to have an official diagnosis that is associated with "being different."

I don't think it's a bad thing to let her come to terms with this in her own time frame. I think it's okay to talk about autism in terms of the specific challenges she experiences rather than focus on the word autism and the diagnosis. It would be important for her to continue learning about herself, the challenges she faces, and healthy ways to manage any anxiety regardless of the terminology used.

Besides giving her teachers this knowledge, will she be getting any other supports? Do you expect her life to change in many ways specifically due to this diagnosis?

I might consider trying to get her involved with other autistic teens if you could find a way for her to do that.

Thank you for this. This has been ongoing since primary school and she has had many challenges in terms of friendships, school refusal, talking about wanting to die but it has essentially taken this length of time to get a diagnosis. She had been receiving some therapy regarding managing emotions and understanding why she responds in certain ways. Which helped but she disengaged. We had issues with getting her to attend school so had to have these discussions with teachers. It seemed to make sense to advise the teachers of the outcome as I felt it may explain some of her behaviours in class. I never envisaged the sitauatjob we are in now where they teachers know and she doesn’t want to know and that’s uncomfortable. She is heading in to 3rd year so exams etc will be looming so felt some plan needed to be in place in anticipation that things may start to crumble for her. I suppose I now feel she needs to know as her teachers know and this is now an unfair situation for her. The school have said there are a number of older girls who were diagnosed in 6th year who be good to chat to at a time when she is ready. I want the decision to tell her to be right for her and not to ease the guilt I’m feeling having not said to her and her teachers knowing. She would benefit from additional support outwith school academically (she def will not be open to accepting it at school) and if she was at some point wanting to resurrect some help with feelings and emotions then that too would be helpful.

 

[marc_101]

As others said, give her some time. She knows she is different. Even without traits that resulted in a diagnosis, all teenagers think they are different at a time when they want to be like everyone else without knowing who they are. It's the essence of being a teen. It's a difficult age; trying to find who they are. The best you can do is support her because underneath the mask of independence she is still a child.

My other recommendation is for you to get more informed about autism. If you hang out here for a while, you'll notice that we are all very different even though we share some traits. Autism is a neurological condition, not a personality. Every person here has a unique personality with a unique life story. You need to learn what autism means for your daughter -- her uniqueness. Don't get too stuck in the diagnosis -- in thinking that your daughter is like others with autism.

And stay away from YouTuber pseudo-psychologists.

 

[Rodafina]

Thank you for this. This has been ongoing since primary school and she has had many challenges in terms of friendships, school refusal, talking about wanting to die but it has essentially taken this length of time to get a diagnosis. She had been receiving some therapy regarding managing emotions and understanding why she responds in certain ways. Which helped but she disengaged. We had issues with getting her to attend school so had to have these discussions with teachers. It seemed to make sense to advise the teachers of the outcome as I felt it may explain some of her behaviours in class. I never envisaged the sitauatjob we are in now where they teachers know and she doesn’t want to know and that’s uncomfortable. She is heading in to 3rd year so exams etc will be looming so felt some plan needed to be in place in anticipation that things may start to crumble for her. I suppose I now feel she needs to know as her teachers know and this is now an unfair situation for her. The school have said there are a number of older girls who were diagnosed in 6th year who be good to chat to at a time when she is ready. I want the decision to tell her to be right for her and not to ease the guilt I’m feeling having not said to her and her teachers knowing. She would benefit from additional support outwith school academically (she def will not be open to accepting it at school) and if she was at some point wanting to resurrect some help with feelings and emotions then that too would be helpful.

You are in a tough position, trying to do your best with a very complicated situation. Hopefully you get lots of useful advice from here and hear some ideas that will work for you and your family.

 

[Hypnalis]

I want the decision to tell her to be right for her and not to ease the guilt I’m feeling having not said to her and her teachers knowing.

She doesn't know what's right for her because she doesn't have the facts.
This is about her. She deserves agency, and must accept it even if she'd prefer not to accept the bad with the good..

Tell her ASAP. Start with genuine apology.

Maybe starting with "I think I've made a serious mistake, and I want to apologize".

There's a non-zero chance that an "I'm sorry you feel this way" or "I might have made a mistake" or "Some external factor made this thing happen with me as its innocent agent" will turn out to be an "unforgettable experience" for your daughter.

Reminder: sincere but unnecessary apologies are completely free. There's actually a fair chance of an upside.
And it will probably sort out the guilt problem (if it's the real thing).
It also will help if you're avoiding/deferring accountability, but it won't address the root cause.

 

[The Pandector]

FWIW, I think you have taken a proper approach. It's a good balance, while your daughter wraps her head around some sensitive personal news.
1) Don't know how you handled it with the teachers, but it seems critical that they treat her no differently than she would normally be treated, and that they be strictly instructed not to broach it with her.
2) You have a responsibility to motherhood, and for you that included informing her teachers; but she has asked to remain uninformed, which you have honored. (Which makes #1 very important.) I think you have done very well in finding an impossible balance.

I'm unduly proud of your daughter, too. I've read several discussions around here by mature adults who take seriously revealing their autism; not cut and dried. While it may sound juvenile in a 14yo, she will deal with this decision all her life. She's taking time in thinking it through the first time, and not being 'bullied' into adopting autism as part of her public persona.

Good on both of you.

 

[Seladon]

Well done Mum! You've been considerate, thoughtful and transparent in your handling of this complex and sensitive issue. Your daughter will be immensely thankful for your support one day, even if she doesn't or can't express and feel that at the moment (and teens are often in their own head and self-absorbed, they're allowed to be, please don't take it personally). By working together on this and also giving her space, you'll give her the gift to grow organically into the young woman she deserves to become.

Daughter may well struggle for some time, though, longer than you may think or prefer, so be prepared for that. Some of us diagnosed as full adults or college students spend years feeling impostor syndrome, doubt, denial and embarrassment. It's a personal process that as other posters rightly have said takes time and adjustment. Think of it as a major challenge to identity like any other, such as a sexuality awakening or finding out you have dual ethnicity. Watch out for depression setting in and step in if it gets bad or shaky (lapses in the basics like communication, hygiene, agoraphobia etc.), but other than that let her be and ride the storm.

Sometimes I wonder how different my own life would have been if my Mum had followed our GP's advice and got me tested at 15, rather than me doing it myself over a decade later. Me & Mum have a good relationship, and she supported and helped me with my assessment, but I'm still a bit ambivalent about her refusing to sit down and discuss ASD when I was a teen. She says she was protecting me from self-judgement, more bullying, and bigotry of low expectations, and perhaps that was a good call. We'll never know.