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NAS89119

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’m sorry that your daughter is having such a hard time at school. I’ve often had similar thoughts- if people and society were more open and accepting of differences there wouldn’t be a need for a ‘label’. It still makes me angry and sad sometimes thinking about that. But sadly the truth is that society is generally not so accepting of differences. Having a diagnosis doesn’t have to be something that other people know about- my first thought when someone suggested I might be autistic (after years of mental health issues and after having accumulated heaps of misdiagnosis) was ‘i don’t need another label’. But when I started reading about autism in women, it made so much sense and whilst being diagnosed as an adult is confusing, it helped me so much. Not because I now have a ‘label ‘ but because it has explained so much, eg. Why I felt different and struggled to fit in, some of my issues with food etc and it is helping me understand myself better. Telling others you are autistic is not necessarily helpful but it helped me be much more at peace with myself- because before knowing I often felt maybe I just wasn’t putting in enough effort to make friends or be social or to join in with certain activities. I am now starting to be more accepting of who I am and I am also getting better at letting myself be myself. It is exhausting to mask and try to be someone you are not and it is not sustainable in the long term. 

    How does your daughter feel about seeking a diagnosis? Does she know she might be autistic? She wouldn’t have to tell anyone if not comfortable with that (and sadly in my experience it is often better not to tell, except for close friends or understanding people, in which case it might feel good to tell them but it won’t change their behaviour as they are already accepting. People have a lot of misconceptions about autism sadly). Telling the school would be good because she could access some reasonable adjustments and support. Even if she doesn’t need adjustments now i think it is still beneficial to have the diagnosis in case she needs adjustments in future. I had no adjustments at school or for bachelor and masters- i didn’t have a diagnosis and when I got the diagnosis I didn’t anticipate needing to ask for adjustments but I am actually now getting a lot of support from the university for my PhD- sadly i’m in an environment now that is not so accepting of my differences so it has become an issue and I am glad that I have the diagnosis because the university is now advocating for things to be made accessible for an autistic student. So i think it is quite useful to have a formal diagnosis as if you do need adjustments it is not practical to only seek a diagnosis at that point due to long waiting times. The only exceptions are probably if she was considering a career where it might be harder to be accepted with an autism diagnosis (i think things like military). 
    not sure if this is helpful. 
    You are definitely not alone in feeling frustrated about society not being so accepting of differences. I would hope that in future things might become more accessible for autistic people but I’m not sure- there is definitely a long way to go. There is some more positive dialogue now though about autism- my university has this leaflet highlighting some of the positive traits like deep focus, attention to detail etc. 

Reply

  • I’m sorry that your daughter is having such a hard time at school. I’ve often had similar thoughts- if people and society were more open and accepting of differences there wouldn’t be a need for a ‘label’. It still makes me angry and sad sometimes thinking about that. But sadly the truth is that society is generally not so accepting of differences. Having a diagnosis doesn’t have to be something that other people know about- my first thought when someone suggested I might be autistic (after years of mental health issues and after having accumulated heaps of misdiagnosis) was ‘i don’t need another label’. But when I started reading about autism in women, it made so much sense and whilst being diagnosed as an adult is confusing, it helped me so much. Not because I now have a ‘label ‘ but because it has explained so much, eg. Why I felt different and struggled to fit in, some of my issues with food etc and it is helping me understand myself better. Telling others you are autistic is not necessarily helpful but it helped me be much more at peace with myself- because before knowing I often felt maybe I just wasn’t putting in enough effort to make friends or be social or to join in with certain activities. I am now starting to be more accepting of who I am and I am also getting better at letting myself be myself. It is exhausting to mask and try to be someone you are not and it is not sustainable in the long term. 

    How does your daughter feel about seeking a diagnosis? Does she know she might be autistic? She wouldn’t have to tell anyone if not comfortable with that (and sadly in my experience it is often better not to tell, except for close friends or understanding people, in which case it might feel good to tell them but it won’t change their behaviour as they are already accepting. People have a lot of misconceptions about autism sadly). Telling the school would be good because she could access some reasonable adjustments and support. Even if she doesn’t need adjustments now i think it is still beneficial to have the diagnosis in case she needs adjustments in future. I had no adjustments at school or for bachelor and masters- i didn’t have a diagnosis and when I got the diagnosis I didn’t anticipate needing to ask for adjustments but I am actually now getting a lot of support from the university for my PhD- sadly i’m in an environment now that is not so accepting of my differences so it has become an issue and I am glad that I have the diagnosis because the university is now advocating for things to be made accessible for an autistic student. So i think it is quite useful to have a formal diagnosis as if you do need adjustments it is not practical to only seek a diagnosis at that point due to long waiting times. The only exceptions are probably if she was considering a career where it might be harder to be accepted with an autism diagnosis (i think things like military). 
    not sure if this is helpful. 
    You are definitely not alone in feeling frustrated about society not being so accepting of differences. I would hope that in future things might become more accessible for autistic people but I’m not sure- there is definitely a long way to go. There is some more positive dialogue now though about autism- my university has this leaflet highlighting some of the positive traits like deep focus, attention to detail etc. 

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