Published on 12, July, 2020
Hi,
We think our 9Yo daughter is on the autism spectrum. We pretty much know to be honest. After several years fighting to be heard to no avail at her previous school (she is bright, a bookworm and behaves impeccably at school), when we moved we found that the school (where I also work) flagged up some social concerns themselves so that has helped. However despite an awareness around her and around ASD in the school as a whole, I am still finding it difficult to get across the extent of the challenges she faces. I have had comments like 'she is fine' or 'she seems perfectly happy' and whilst I don't doubt there are moments she enjoys herself or has positive experiences, underneath it all she is really struggling, and we know our child. She has started to not want to come to school, crying every day and sometimes at evenings too and is just says that everyone is laughing at her or making fun of her. We recently got her to start writing her feelings down and many of these are to do with things specific children have said or how they made fun of her, alongside the fact she finds things in class too noisy and finds change difficult. I try and talk over these situations with her and try to see the other perspective or to give her tips on how to handle similar situations, and sometimes I try and gauge what her behaviour was in response, i.e. were you laughing and sending the message you were enjoying the joke or whatever it was (sometimes I think it's teasing or jokes but she can't understand it), and I try and tell her not to respond in that way so they know you don't like it. I can see from an outsider view it might look like she enjoys things or isn't bothered but we then get the feelings and behaviours coming out at home. At home she is hugely emotional, goes from1-100% with her anger and emotional about seemingly trivial things and simple routines are a constant battle and so hard for her, and us. She has also recently started struggling going to outside drama activities which she loves , saying she wants to go but can't stop crying and then everyone will laugh at her for crying. She is just so fragile. She told us recently she has to hold it together for 6 hours every day at school. We have been consistent and not backed down on school, or activities but it is taking its toll on us emotionally seeing her so upset so often.
I guess I feel like, how can I get people to realise what she is feeling if she is presenting another way to others? I know it's masking but someone said to me recently you could just say everything is masking. That made me feel like should I not trust my child's feelings? Surely I need to listen to her and the behaviours I'm seeing and take them seriously? And yes I do actually think a lot of the day she is masking. She is desperate not to stand out to be different or anyone to look at her.
I should point out we were pursuing an ASD diagnosis before Covid and then we moved countries so we are back to square 1 and we are going to do so again but this is feeling a lot more daunting as she is now much older and more aware and more desperate not to be different so we don't even know how to properly speak to her about this. We have had conversations about how we are all different and can cope with things differently but haven't actually discussed ASD.
Any insight or advice or just similar experiences much appreciated. There is so much more that led us to this point that I can write here.
Hi Hil80 - I am going through a very similar thing with my 8yo daughter. She is such an awesome kid, highly intelligent, logical, literal, honest, she loves learning jokes, Lego, Minecraft and Pokémon. She appears confident and happy and behaves impeccably in school. All the teachers and peers love her.
She saves all her meltdowns for outside of school usually just for me. It has taken a while to convince her step Dad that there’s an issue but now he’s seen a few meltdowns for himself he is onboard. Her meltdowns exhibit as wailing crying, rocking, head hitting, she has told me afterwards that during them she has negative thoughts about how awful she is.
She struggles with her loud classmates. She doesn’t understand her peers behaviour. She can’t verbalise her needs because she doesn’t know what they are and sometimes it’s because she thinks she’ll be breaking school rules if she speaks up. This has lead to her not having a drink all day, wetting herself, sitting through films that upset her, not being able to take part in school events like firework displays and discos.
I have felt like I’m going mad because I’ve felt no one believed me. I eventually emailed her school to request a phone call with the schools SENCO. It took a lot of courage because I just thought they were going to dismiss me. They listened to my concerns and have agreed that she needs assessing. Luckily her teacher has identified that she can’t understand non verbal cues.
Her paternal grandparents however think she is going through a phase and that I’m over reacting. She had a meltdown after a FaceTime with them the other day. For some reason she wasn’t masking and could barely interact with them. They kept asking her to smile and sit up and face the camera and talk until eventually they asked her to call back when she was less tired and more able to talk to them. Massive meltdown ensued and she was mute until lunchtime the next day.
When I gathered the energy to communicate with her grandparents what had happened and suggested that when she isn’t able to engage verbally that they read her a story or play charades or tell jokes they told me that it was just because she was tired and that she doesn’t need to ring them when she’s tired. She should only FaceTime when she wants to. I tried to explain that she wouldn’t just go “I feel like ringing my grandparents today”. That we have a routine that she do it every Wednesday so she can prepare and remember. Since then they have suggested that they come and visit us more often as she’s never had a meltdown for them and clearly she is happy and enthusiastic when they take her out for days. I’m at my wits end.
All I can do is try not to take it personally, wait for her assessment to be completed and know that I’m her mother and I know her the best. I know that her meltdowns with me are because she feels safe and knows that I won’t make her feel judged and ashamed for them. She trusts me with her most vulnerable self.
Sorry for the huge reply and just speaking about myself but I just wanted you to know you aren’t alone.