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, I just read your post and it felt like I was reading about myself at that age. I am now 25 and I was diagnosed as autistic a few months ago. I was also a bookworm growing up, I did very well academically and behaved impeccably at school. My mum did a good job and making me feel that 'being different' was a positive thing- but as I grew older the differences became more and more noticable to me and I struggled. I was bullied. At age 11, I didn't want to go to school anymore. I changed school at the time which helped a tiny bit but I felt extremely isolated and I didn't like school. I didn't have friends, I couldn't connect to anyone. At home I also started getting into lots of arguments with my stepfather (I think I just needed to let off some steam after masking and holding it together all day). I was also extremely exhausted from school All throughout school I did very well academically, but I suffered- I had no idea I was autistic so I couldn't understand why I couldn't fit in and felt so different. I used to hide in the library at breaks or lunchtime as it was quiet and I liked the librarian, but then she left and the library became louder, so I lost my safe space. On the surface and to my teachers all seemed well, but this takes a huge toll. I went to university and again did well academically but my mental and physical health suffered over the years- I now recognise that I was probably experiencing autistic burnout, repeatedly, but I had no idea what was going on- instead I just tried to push through and distracted myself with my studies. I now struggle with a lot of mental health issues, lots of anxiety, stress, issues around eating and I am severely burnt-out. I think this has accumulated over years. I also never learnt to manage my energy levels and to be mindful that certain activities take a lot of energy. I never learnt to balance. I wasn't kind to myself or accepting as I had no idea where my differences were coming from. It's very helpful to now know that I am autistic- a lot of things make sense and of course a lot of the damage is done and simply knowing I am autistic cannot fix anything overnight. But at least I can now begin to come up with strategies to move forward and I can better understand why I am struggling and what has been happening. I hope it's ok that I spent such a long time explaining my own story- I was so so reminded of myself when reading about your daughter and I wanted you to see where I am coming from.
My main comment is that I think it is very helpful that you recognised that your daughter is autistic at an earlier age. It helped me a lot to understand why I was different and I think knowing you are autistic can help with self-acceptance. It can also make you more mindful of how to manage your energy levels and certain situations etc. Masking takes a lot of energy and of course there are situations where it is wise to do so but if you are constantly masking (and don't even realise that's what's going on), it can be very very draining. I think you are very right in taking your child's feelings and behaviours seriously. Also the school really should also do their best to make accommodations to make it a more positive experience for your daughter- the fact that she is doing well academically and is behaving well should not be used as an excuse to not make accommodations- I am not familiar with what can be offered in UK schools and I think it really depends on what your daughter needs, but it might be that she can go to a quiet space, to somehow limit sensory stimuli/overload etc. It will probably be easier to get support once she has an official diagnosis but that could take a while- except if you would consider going privately? The cost can be a big limitation though.
Does your daughter know she might be autistic? Again I'm not sure what the best way would be to go about this- but I think other parents on here might be able to help. There have been previous posts discussing how to talk to your child about a diagnosis.
In terms of her not wanting to go outside and not wanting to engage in activities she loves, those really sound like warning signs to me. Again not sure what the solution is but it does sound like school is very exhausting ... not sure to what extent that can be improved through accomodations but it might be a good idea to make sure she gets some downtime to recuperate in the meantime. It takes so so much longer to recover if you keep pushing beyond your limits- I have a tendency to do that especially with activities or work I love, but over time it takes a toll. I think it's much better to take breaks, even if that means maybe sometimes missing an activity (or school?? not sure about that one...), so that a complete state of overwhelm and exhaustion is avoided... because it can take much much longer to come back from that and it causes problems in the long term if you keep pushing through. I understand that it's a fine balance as of course you also don't want to end up in a situation where you don't do anything but in my experience as energy levels improve, the motivation to engage again comes back as well. I am now much kinder to myself if I feel like not seeing a friend- I love going for coffee with a friend sometimes but it does take considerable energy, so I am now much more mindful of that and I know that sometimes I may just not have that energy to spend, even though I wish I did. In the past I would have probably made myself go and meet someone anyways... and it might turn out ok... but in long term it doesn't ...now I prefer to just allow myself to let it go so that in the future I will have the energy to meet someone and make the most of it without over-exerting myself. Like I said though, I've definitely not figured out how to manage stress/anxiety and energy levels in the long-term and how to avoid the burn-out cycle, so I might not be the best to advise. I think learning to manage this is highly individual and it takes time to figure out. But as your daughter is still so young and is being diagnosed now, that means that she has much much more time to figure out how to strike that balance :)
I wish you and your daughter all the best. I hope you get heard. It is worth fighting for that in my opinion. And I also highly recommend continuing to reach out on this forum- there is a lot of kindness, wisdom and support here. Best, Ann
I forgot to mention, in terms of the diagnosis and moving countries. I can relate to that as I faced a similar issue with frequent moves between countries meaning that I would have probably never made it to the end of any waiting list. I actually had a pre-diagnostic assessment with Sara Heath- she has a lot of experience, is autistic herself and she does the assessment online so that it can be done no matter where you live. She will not be able to make a formal diagnosis but will tell you her opinion and then write a report. If Sara thinks your daughter is autistic and if you are in the UK or move back to the UK you can then arrange an appointment with a consultant psychiatrist who will be able to conduct an assessment (using Sara's report as a base) and who will be able to provide a diagnosis that is recognised by the NHS (as this consultant also has experience with conducting autism assessments for the NHS). This assessment was also done online. If you are currently in the UK or think you might be back in the UK in the near future, this might be a good route to take for diagnosis. It is also more affordable than many other private diagnoses options.
I actually had the prediagnostic assessment with Sara whilst living in Germany. I was on a waiting list there but also anticipated moving again and I just wanted to know for myself if I could be autistic. Only later, did I realise that with Sara's report I could get a formal diagnosis if I moved back to the UK- so when I did move back that's what I did.
Autonomy Plus - Pre-Diagnostic (shropshireautonomy.co.uk) This is Sara's website. I would recommend phoning or emailing her if you are interested- she is lovely. It also really helped me to talk to her as she understood (She is autistic herself) and was also able to then explain a few things and give some tips. She might also be able to further advise you regarding school and accommodations etc.