How can I be heard and help our daughter?

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.

Parents
  • Hi Hil80 - sorry to hear your having a rough time currently - You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis 

    Furthermore, it is important the professional you see has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section: https://www.autism.org.uk/directory

    Additionally, you may be interested in contacting a local National Autistic Society branch. Our branches offer support to local autistic people and their families. If you interesting in checking if there is a local branch near to you, please follow the link below: https://www.autism.org.uk/what-we-do/local-branches 

     Our branches are volunteer-led, and as such every branch and group is different. Some are parent support groups, some provide support and information to autistic adults, while others have office premises and run their own a drop-in service. You will need to check with a branch directly for more information on whether they are able to provide a particular service that you are interested in. 

    All the best,

    SarahMod

Reply
  • Hi Hil80 - sorry to hear your having a rough time currently - You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one: https://www.autism.org.uk/advice-and-guidance/topics/diagnosis 

    Furthermore, it is important the professional you see has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section: https://www.autism.org.uk/directory

    Additionally, you may be interested in contacting a local National Autistic Society branch. Our branches offer support to local autistic people and their families. If you interesting in checking if there is a local branch near to you, please follow the link below: https://www.autism.org.uk/what-we-do/local-branches 

     Our branches are volunteer-led, and as such every branch and group is different. Some are parent support groups, some provide support and information to autistic adults, while others have office premises and run their own a drop-in service. You will need to check with a branch directly for more information on whether they are able to provide a particular service that you are interested in. 

    All the best,

    SarahMod

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