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
  • Wow! sad to say but I’m glad I’m not alone as I’ve always felt as though I’m the only one going through this, but you’ve just described everything we’re experiencing.  
    My child is 11yo and from a young age has displayed challenging/‘different to the norm’ behaviours and with age is getting more profound.

    Everyone I speak to says ‘but does having a diagnosis change anything?’ 
    No it won’t, but at least I can try to find some support on how to deal with it.
    All I want is someone to tell me “yes your child has this diagnosis and this is how to help them or no, there’s nothing wrong with your child, it’s just normal teen behaviour 

    I feel completely lost and feel like there’s nowhere or no one to turn to for help

  • Hello!

    This is my very first post on this forum. I am at the very beginning of the assessment process with my almost 8yo daughter, and our situation is very similar to OPs with regards to my daughter's presentation! Although my girl is definitely more introvert/passive with others, and is more prone to shutdown behaviours as opposed to meltdowns (although these occasionally occur too). 

    It is actually the school's SENDCO that approached us about further assessment as she has been having a really tough time since they all went back to school properly post covid.

    I agree with you NAS77435, that these behaviours are becoming more obvious as my daughter grows up, and the other girls in her class seem to be developing socially beyond what she is capable of learning/imitating. It doesn't help that she is academically very strong, so has perhaps flown under the radar for much longer than she would have otherwise. I have always suspected she may be autistic based on traits that have been present since she was a baby, but it is only since sitting down to fill in referral information that these seemingly small behaviours, when added together, actually paint a picture that is highly suggestive of autism.

    Hoping this will be a place of information sharing and support as we (hopefully) move through the diagnostic process! 

Reply
  • Hello!

    This is my very first post on this forum. I am at the very beginning of the assessment process with my almost 8yo daughter, and our situation is very similar to OPs with regards to my daughter's presentation! Although my girl is definitely more introvert/passive with others, and is more prone to shutdown behaviours as opposed to meltdowns (although these occasionally occur too). 

    It is actually the school's SENDCO that approached us about further assessment as she has been having a really tough time since they all went back to school properly post covid.

    I agree with you NAS77435, that these behaviours are becoming more obvious as my daughter grows up, and the other girls in her class seem to be developing socially beyond what she is capable of learning/imitating. It doesn't help that she is academically very strong, so has perhaps flown under the radar for much longer than she would have otherwise. I have always suspected she may be autistic based on traits that have been present since she was a baby, but it is only since sitting down to fill in referral information that these seemingly small behaviours, when added together, actually paint a picture that is highly suggestive of autism.

    Hoping this will be a place of information sharing and support as we (hopefully) move through the diagnostic process! 

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