Unsure parent - Autism or something else

Apologies for the lonnnng post.

Hi all, I'm new here. I have a wonderful 8 yo daughter who is my whole world. I had no previous experience with babies or children before having her, so have no idea what is "neurotypical" behaviour or not. What's "just her age" or something a bit more complicated.

From her being a very young age, I have raised concerns but been made to feel like a neurotic, paranoid first time mum. I was literally the only person in the whole world who could see these traits as something more than typical young behaviour. A few concerns were; when I'd sneeze, she would be completely in shock and cry; sudden loud noises such as a hand dryer would send her into a melt down; I dreaded birthday parties - she would stick to my side and refuse to sit with the others having fun; clapping after the happy birthday song would completely stress her out and she'd shout at me to stop clapping and singing, grabbing my hands to stop me; when my parents would visit, she would run and dive into the sofa, burying her head and refuse to acknowledge their presence until she had time to come round and then would be fine; hyper sensitive to everything, and seemingly very embarrassed at anything that brought attention to her, or maybe not being able to manage sudden feelings; these concerns were raised to the health visitor who told me she was "just quirky". I hate that word now.

Speech was ok, but she elongated end words in a low pitch, which she has gradually grown out of. Meltdowns over having to do something she didn't want to, such as leave a fun place. I learnt how to manage her behaviour before it turned into a massive meltdown, by being overly playful about things in order to get the result we needed. But now as she gets older, I worry I am holding her back by "babying" her and being too silly. I noticed I was starting to dread certain situations and have spent 8 years walking on eggshells, not knowing what treatment I'm going to get or what reactions she will have to things. (Some days everything is peaceful and we have no meltdowns or arguments. Sometimes things are horrendous and they escalate very quickly.)

She would not approach children even though she desperately wanted to play, but she would randomly ask a girl walking past if they wanted to be her best friend...  She would often go off on her own, wandering about by herself than play with others. She has absolutely no social understanding or boundaries and even at 8 will interrupt people in the middle of conversation. She will not be told or corrected, she gets embarrassed and tells me off! She is at ease with adults, and when little would ask her teacher to play with her, in a class full of children.  I can see she doesn't understand things very well, she is almost in her own world most of the time and everything is on her terms. However, she is a very bright, very funny, very clever and articulate little girl who I worry is terribly misunderstood by others. I honestly just don't think she understands things the way most others do. So she comes across as not listening, when actually maybe there's more to it.

How do I know she's not just acting incredibly spoilt? How do I know whether a certain behaviour warrants discipline and consequence or if it is something completely out of her control? It is clear to me that she cannot regulate her emotions and feelings, she will talk talk talk AT someone she's just met on a dog walk, however she cannot make eye contact when talking to the GP for instance and fiddles a lot. She cannot walk into a crowded space, such as a party or school disco, she will cling to me like a koala, crying, but also refuse to leave. Yet she has managed to do this when I have not been with her. So maybe I'm the problem? She gets terrible separation anxiety with me, but not anyone else. 

I thought she had grown out of a lot of her behaviours and bad attitude towards myself and my husband, however from around this January she completely regressed and it's like handling her as a toddler again a lot of the time. I know the pandemic has affected everyone, especially our children, but it feels like it has triggered something and she has changed a lot. Massive melt downs, awful attitude towards us and point blank refusing to do things. We have really struggled over the last few months with her behaviour and I want to get on track to a more peaceful, happy household!

Sorry for the ramblings, I am trying to make sense of things and just want to give my girl the best start in life that I can, so she can have meaningful friendships and manage her emotions better. But mainly so I can manage situations better. I feel I am failing her as I should have pushed harder when she was younger, and not let others' disbelief at me shut me down. I don't always have the answers to make her feel better or know what to do when she is screaming and shouting but doesn't want me to leave her side. I just want her to be happy.

Thank you for reading, if you've made it this far! Any thoughts are welcome. X

Parents
  • Hello F, 

    Thank you so much for your reply, it has really helped to read your experiences and makes me feel that little bit less alone! 

    It's strange, as she has seemed so much better as she has got older, and I thought maybe she had outgrown certain tendencies. It's all a minefield and I'm bogged down in researching different conditions. Who would have thought there could be so many!!!

    I have been looking into parenting classes and thinking about family therapy, she has started counselling but as it's only 6 sessions she might need something more long term. 

    It is such a shame that you have had to fight for so long for any insight or answers, but I'm glad you have had support for both of you. I definitely feel like I need counselling, just to try to manage my own feelings of self doubt and sadness at her having difficulties to navigate, no matter what the outcome of any assessments.

    Thank you for your kind words, and taking the time to respond, it really means a lot.

    Wishing all the best for you and your delightful daughter :) 

    Kindest regards,

    H

Reply
  • Hello F, 

    Thank you so much for your reply, it has really helped to read your experiences and makes me feel that little bit less alone! 

    It's strange, as she has seemed so much better as she has got older, and I thought maybe she had outgrown certain tendencies. It's all a minefield and I'm bogged down in researching different conditions. Who would have thought there could be so many!!!

    I have been looking into parenting classes and thinking about family therapy, she has started counselling but as it's only 6 sessions she might need something more long term. 

    It is such a shame that you have had to fight for so long for any insight or answers, but I'm glad you have had support for both of you. I definitely feel like I need counselling, just to try to manage my own feelings of self doubt and sadness at her having difficulties to navigate, no matter what the outcome of any assessments.

    Thank you for your kind words, and taking the time to respond, it really means a lot.

    Wishing all the best for you and your delightful daughter :) 

    Kindest regards,

    H

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