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I've been reading with interest some of the articles around diagnosing autism and neurodiversity in females and have a question / observation.

My son is on the autism spectrum, dyslexic, and has fragile mental health.

For many years I did not understand his challenges, until eventually he was given a diagnosis in secondary school, following long years of problems at school and with social interaction and friendships etc. He was not accepting of his diagnosis and it has taken him until adulthood to become more comfortable with his 'label'. I understand this completely; it is up to him how he feels about it and he felt that he didn't benefit from being diagnosed...only labelled and even more disadvantaged (his words not mine). Although in reality, it did help him to understand himself more, helped us as parents to understand him better, and helped school to better support him during those years.

My son is now an adult and I am supporting my daughter with many of the same challenges (although presenting very differently to her brother). My daughter really struggles at school, but more because she finds it hard to understand the 'rules' (if you will) of friendship and always seems to find herself on the wrong end of them. Please don't jump on me - I do appreciate that these 'rules' are those created by people who are not neurodiverse and don't fit all. I'm not suggesting this is correct, just trying to explain. It's like the kids her age don't 'get' her and they bully her relentlessly. This just adds to her confusion and upsets her and causes her to be depressed.

I know from experience that my daughter is on the spectrum and in fact may have additional support needs that have not been diagnosed because they may not present as traditional symptoms. I am reluctant to put her through the whole car crash of a process that it took to receive my son's diagnosis, as the process in itself I think can be traumatic for somebody who already feels isolated and sensitive. It wouldn't be great for her mental health, given everything else she is struggling with in school and life.

And yet, I do want to support her as much as I can and for others to be able to do so - for example at school. I guess my question / observation is this - why can't we just use our common sense and experience to acknowledge and support, without having to have it recorded on a piece of paper? School must have seen this a thousand time and if truth be know, know exactly how to support my daughter...but they 'can't' because she has no diagnosis. Not sufficient that all the signs are visible, that she struggles immensly in social / friendship groups, and her mental health is so fragile ( she sees a counsellor at school too). Why do we have to run around in circles, ticking boxes, and putting our children through this pantomime, just to help them to get through?

This post is not meant in any way to be patronising or offensive to anyone (if I've used terms you dislike). I think I am just frustrated and upset that because my daughter does not present as obvious, she isn't o the radar. She gets involved in all sorts of things - school council, fundraising, initiatives, organising things etc and presents as really confident, when in fact she's crumbling inside and all the other areas of her personality are not being seen.

Every day we have bullying, so my daughter is mentally exhausted dealing with this (and avoiding these people), so that she falls asleep as soon as she gets home. Everyday I have to try to explain why people do those things that she doesn't expect them to, and why to her. She has no friends and so relies on me to fill that gap (something which I am happy to do but it's not me she craves - she wants real friends of her own age, like others have) and when she does make a friend, they are very short-lived relationships. She is a sweet and gentle soul and we are just not set up to embrace beautiful people like her. :-( My heart breaks for her because she is so very wonderful and all of the attributes I have mentioned above make her an amazing person. It took my son until adulthood to grow into himself (if that even makes sense), so that all the many things he struggled with as a young person - like gentleness, empathy, focus, socialising - have made him a wonderful partner, great friend, and all round amazing human being. But he had a hell of a bumpy ride to get there (including periods of suicidal thoughts and feelings, which could have taken him from me at any point along the way). It terrifies me that my daughter may need to tread the same path and that she will find it more difficult to handle. As a parent, I just feel like I want to protect her ...but can I only do that by submitting her to the system for processing and labelling? When what she and I both want is for her just to be let be (but still somehow make it through these extremely difficult school / teenage years)

     

Parents
  • I find it helpful to think of 'autistic' as an answer rather than a label. It's the answer to 'why do I act like that?', 'how come everyone knows the rules except me?', and so on. I also came to the realisation that I was autistic on my own before seeking assessment to confirm though. I think the approach I've taken was- not consciously- a good one because it felt like a search for understanding followed by a real answer rather than something imposed on me from the outside that wasn't under my control to share or not as I wished.

    It can be really hard to be an autistic teenage girl because you struggle so much and people just don't seem to see it. Do you think it would help your daughter to see/hear from other young women who have been in her situation, and perhaps to identify with them ahead of any formal diagnostic process you might decide to go through with her? There are some girls and women on YouTube (and writing books) who talk about the exact same things she's going through right now and it might help her to know she's not alone in her struggles.

  • I love that! An ‘answer’ not a ´label’ :) you put it much better than I did but that is what I wanted to get across too!

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