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

  • 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! 

  • 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

  • Thank you - I hop you and your daughter had a lovely Easter too Slight smile

    For audio books, I subscribe to Audible. The best ones for sleep are stuff read by Stephen Fry for me - long audio books and a soothing but not monotone voice. I struggle more with anything with a strong accent or e.g. multi-cast stories because my brain has to do more work. I also have to confess to subscribing to the Moshi sleep app - it's worth the price because it works. It's a good selection of stories and music that seem to be good for winding my brain down.

    Internal dialogue is a bit of a curse. It doesn't go away and I've never work out how to turn it off. I'm dreadful with stuff like mindfulness - it just doesn't work for me. A lot is about visualising things, emptying your mind etc. - and my brain doesn't work like that (I don't think/dream etc in pictures). Displacement does seem to be as good as I can get it. I think it can work for others though.

    Meltdowns are tricky - by luck etc. I've managed to never have a proper/strong one in the way some others describe. I suspect it might be a bit of both - tricky in kids. From what you describe some may genuinely be triggered by stress. But others could just be "normal" childish strops. And I'm not sure how you really tell the difference.  But trying to work out the triggers/circumstances can help you work out if each instance is one or the other or a combination.

    But being able to switch it off - depend on how it plays out - might just been she's not comfortable with public displays of emotion. So she's supressing or masking a meltdown. It doesn't mean there isn't turmoil inside.  You can see something similar with those with Tourette's - tics can sometimes be supressed. But it can just mean they'll build up. One of our kids does this - she supresses tics at school a lot - subconsciously - but then they flare up at home / school holidays when she relaxes.

  • Thank you Losan, that really helps. I think you might be right about the internal dialogue, she recently mentioned it for the first time so now she's aware of it, it might be annoying her a bit. She doesn't seem to be bothered or distracted by background noises.

    She does love to listen to audio stories at bedtime, but I find that this will often keep her awake! 

    I'm trying to not over analyze everything and just let things be, going with the flow as much as possible. I am trying to re-train my brain, so I don't react so much when she is challenging, and keep a calm head.

    I am still in 2 minds as to whether she is playing up more than it being a neurological condition, although she definitely has traits of High Functioning ASD - her meltdowns seem to be exaggerated, as she can switch it off as quickly as it starts, especially if she is aware of anyone else being nearby and doesn't want to be embarrassed. So it's actually more like a massive tantrum. Which makes me think she is in control of it and surely if it was ASD then she wouldn't have this control. But I'm not an expert, so I have no idea! It's just all very confusing.

    But the main thing is I'm trying to handle it the best I can for her, to make things run as smoothly as possible. It's exhausting though.

    Thanks again for your input, you have helped me so much, I am thinking of things from different angles.

    Hope you had a nice Easter :) 

    And yes, let's hope she becomes a very successful comedy writer! Joy

  • No problem :) I think the challenge is she won't know how to explain things herself - so you may need to observe and ask questions where you can.

    As above, the big distinction is extrovert versus introvert. I have very limited desire for interacting with people - those through work and immediate family is more than enough. I don't want or need to search out more. An autistic friend however very much does want to engage with people on a social level (in a way that baffles me). Whereas a young teen autistic relative is already so clear that she doesn't like "humans" (yes, she's already talking about them in the third person...). She got a couple of friends but isn't good at staying in touch with one of them. She's just not interested in people that confuse her and stress her out.

    Certainly classes with 'stuff' to do might work better, especially if it's not all about social interaction. The book obsession is a good one to have. One future career option for her is as a comedy writer ;)

    In all seriousness, it's great you're thinking about how she will find her path through the world. Personally, I think it's really important to lean in and encourage those special interests.

    You can keep trying to puzzle out why she likes things. One example you mention is that she doesn't like the quiet and fills with audio stories. There are a few options there. So does she like actual pure silence...but "normal quiet" may not be quiet for her e.g. fridge or light buzzing, bus going past, neighbour hoovering, dog barking etc. So one theory is that the audiobooks are covering up all that distracting background noise. Or...she might have an active internal dialogue which is annoying - and an audiobook crowds out that internal dialogue. I certainly found going to sleep a lot easier once I discovered audiobooks. I read so quickly, I'd never use an audiobook for stories/to acquire information. But as a soothing voice reading words to drown out my over active inner critical voice when I want to go to sleep..that works really well.

  • It is so insightful hearing your side, you have made me think of things from a different perspective. Maybe all the things I'm obsessing over aren't even an issue for her. And might never be. She is definitely more at ease with adults, she engages well with them, especially once she is comfortable with them. That's a good idea about the school disco scenario, obviously we haven't had that issue for the past year(!) but I will see how that works out next time. It is so interesting and refreshing to hear different sides, and the more I am researching more deeply and looking into ASD, the more confident I am feeling about tackling any issues. 

    The main thing I need to grasp is how to batter manage my parenting techniques towards her needs, that is all that really matters.

    I am very much introverted, but when she came along I forced myself to take her to baby groups, and socialised her as much as I could.  So I have always tried hard to push my boundaries in order for her to be around others and see me interacting with people, if that makes sense. I have obviously been assuming that she must want deep connections with others and want to be part of peer groups etc, when actually, it might not bother her one bit. So I need to stop assuming and over-thinking everything!

    Once the world starts settling down again and groups start up, I will be looking into what is available in our area for her to try out. We have tried so many classes etc but she just loses interest and no longer wants to carry on.  But I'm sure we will find something(s) she loves. She is only 8 afterall, so there is plenty of time.

    Her interests mainly include Nintendo Switch; Fortnite, Minecraft, YouTube (which I don't usually allow her to watch very much as I am convinced it affects her attitude), she is obsessed with a book series called Warrior Cats and will listen to the audiobooks over and over and over again. She doesn't like the quiet and has to fill it with audio stories. She enjoys being outside but only if it's without the dog(!) as she finds it hard that I need to give so much attention to him (he is young and boisterous.) She likes my full attention, at all times! She has also always really loved telling jokes, and enjoys making her own up. 

    I've waffled on enough now, thank you so much for your input and great advice, it really is so appreciated :) 

  • Quite - I'm looking at it from my perspective of an autistic adult who can now find the words to more coherently explain how I think than I ever could as a child.

    I think one of the genuinely key distinctions is whether she (and you) are introverts or extroverts. I'm firmly on the introvert side - so don't have much yearning for friends or company (it baffles me) or social inclusion. 

    Certainly as a pre-teen girl I was more comfortable with older girls and boys. Girls my own age I didn't really get. Once you get to teenage years that gap can widen - I was just never going to have the same interests or fit in with those who lived life as a popularity contest.

    For the disco things - if it can be arranged can a group of friends go in together. My guess is that way there isn't the overwhelming OMG I'm here. How do I break into any of these conversations? What happens if my attempts to join are rejected etc.

    And as you seem to sense, she needs to find the right peers to fit with. Might be worth trying to spot which other kids are on the margins, neuro-diverse, etc. or whether there are groups outside school that might help her find her 'tribe'. Does she have any special interests?

  • Hi Losan, 

    Thank you for your reply, it is really helpful.  In response to the things you've mentioned - 

    - School disco / family party or meal etc - I always give her the choice, and she is always so excited to go. It is only when she is at the point of entry that she suddenly freaks out and can't face going into that situation. It is like the anxiety of actually going into it, walking into a place with numerous people etc if that makes sense? But at the same time, she refuses to leave, so we are at a stand-off, outside the event, refusing to go in but also refusing to go home.  She really wants to join in and be there, but she can't quite cope with the initial "going in". I will always encourage her to go if she wants to, as she has so much fun once she settles down.  Then the battle is trying to get her to leave at the end!

    - Of course there is nothing wrong with being comfortable in your own company, however when I see her constantly on the outside of situations, where friends or other children are playing, it does hurt my heart that she can't (or doesn't want to) join in. It's like she doesn't know how to fit in almost. If she's happy then that's absolutely fine. But a lot of the time, she wants to be a part of a group but she just doesn't seem to know how. I've always tried "coaching" her almost, on how to initiate conversation with other children, but she just wants me to do it for her. 

    - I would love her to have a small number of meaningful relationships, but my instinct is that other children don't "get" her, and she has often been left out. There have always been sets (cliques) of peers who appear to have strong bonds together, but my girl never seems to be included. It feels like she is always on the outside. At the same time, she is only 8, so I am hoping that she will forge these meaningful relationships in time, when she clicks with the right peers.

    Of course, the majority of this could be MY problem, as I was the same as a child, and it is a lonely place to be, so I panic at the thought of her going through early life the same, not fitting in anywhere, not having meaningful friendships etc. I am trying to just "let it be", and keep my feelings out of it. But if I can guide her in any way, to ensure she has the best opportunities and feel included, then I will do anything I can to help her along the way :)

  • A lot of what you describe does align with autism. You don't need a formal diagnosis to just interact with her in a way that would be consistent with autism.  And consider what 'normal' is in her terms, rather than the norms imposed by societal norms. And it sounds like you care a lot. 

    Parenting classes may not be that helpful if they go along with societal norms - your daughter may benefit from a different approach. One risk is that she just learns to mask better for the sake of a superficially/externally quiet life so acts more 'normal' but it just increases the underlying stress and anxiety and that will build up over time.

    Picking up on a few bits:

    - For things like a school disco, does she want to go / need to go? This could be pretty stressful in terms of lights, noise, social interaction.

    - Is it really wrong to be comfortable in your own company? (i.e. going off by self sometimes)

    - It wouldn't be unusual to only have a small number of meaningful relationships. She might be quite happy with only a few instead of a larger number?

  • 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

  • Hello

    I am sorry that you are struggling with parenting your daughter. A lot of the things that you say about your daughter I could have written about mine when she was eight too. She is also an only child and I really didn't know anything about parenting and am not interested in the hard line/disciplinary approach. Whilst we are obviously a family we are also a 'gang'. When you only have one child there is no parent/children division that you have in larger families. My daughter is now seventeen and diagnosed (privately because the wait for a NHS assessment was too long, up to two years) with ASD just before Christmas. Despite her behaviours we could never have known that she was autistic at eight. Personally I think that it is really good that you have an awareness of ASD. In my experience no one will suggest that your child is autistic. Despite our daughter developing OCD and anxiety, struggling to go to school despite being very academically able, being in a school with an autism hub and having several referrals to mental health services and working with four different mental health professionals no one suggested that we consider ASD. I had to work it all out myself by paying for different assessments. What helped me with parenting her when she was younger was attending parenting classes. Luckily her secondary school delivered these. This also introduced me to the family support team within her school who were fantastic at supporting her needs even if they never suggested ASD as a reason for her difficulties. It is important that you get support so that you can support her. I now have counselling to help me cope. I still struggle to accept that I can't make her happy but am trying to concentrate on just easing the situation whilst i continue to push the NHS to give her the support that she needs.

    Good luck. You sound like the most attentive and caring parent. Don't be hard on yourself. Time will also help reveal what causes her behavioural difficulties. It may be ASD and you are open to this possibility which is a great start. I also hate the word 'quirky'. When I told a friend that my daughter was autistic she said that she had just though that she was 'delightfully quirky'. She is not, she is 'delightfully autistic'.

    Best wishes

    F