Newly diagnosed 11yo daughter - Any tips on where to start?

Thank you for this. Marcella 

If your daughter is a reader or likes audiobooks then perhaps she could read Chloe Hayden's 'Different, Not Less' or you could read it with her. It's written by a young autistic woman who was diagnosed at about 13 and it's a very positive 'welcome to neurodiversity' type of resource. I read it as an adult but would have found it really reassuring as a kid if I'd known I was autistic then.

Massive thank you. I have told my daughter about the forum and about autism from inside - UTube 

I feel already a bit better knowing that there are people that we can listen and turn to

Marcella 

Hi, yes I think it could help a lot to connect to other autistic people and to learn more about what it means to be autistic. It is definitely helping me. In my perspective there are 2 main factors relevant to stress/anxiety: external factors and internal factors. Especially for autistic people, situations/environments that might be fine for others can be very stressful- and of course autistic person will have different things they struggle with but examples could include, social situations, environments with lots of sensory stimuli, changes to routine etc. The world is not designed for people like us, which is why I think anxiety/stress and depression etc are very common in autistic people. So one thing is to be aware of what external factors are contributing to stress- I for example struggle a lot with changes to routine, but before I was diagnosed I didn't even realise that was what was stressing me- I was just stressed/anxious but couldn't tell why. So I think it can be helpful to be more aware of external stressors and then to remove those that can be removed- of course not all situations can be avoided, but within reason and depending on current energy levels I think it's important to be kind to yourself and not unnecessarily put yourself through stress- for example, a supermarket could be a stressful environment (lots of people, lights, sounds etc)- an option could be to go for delivery instead (I personally don't struggle with this one). For me I have also become much more mindful of dosing social interactions- in the past I would have pushed myself to socialise even when I felt utterly exhausted and burnt-out, as it is generally accepted that is 'good for you' and I felt like it was the 'normal' thing to do. Now I recognise that when I am very exhausted and don't feel like socialise, I should allow myself to just retreat- when I have more energy and feel in mood, then I will arrange to go for a walk or coffee with a friend. I guess it could be said that I am avoiding situations that are stressing me and that could be bad- and it is a fine balance, but I think before you branch out to new situations etc you need to be in a relaxed, rested and energised place and you need to have a desire for it. Though I think there are exceptions- I really love/need routine, but currently my eating routine (coupled with stress/anxiety and IBS), means that I ended up severely underweight- here is something where at some point I can't just wait until 'it's the perfect moment', I just need to take the plunge... but actually I usually am only able to do so when I am in a somehow more relaxed state (eg. I have been home for a few days in row with minimal stress). 

The other thing of course is the internal side- ie how do you deal with stress/anxiety, worries etc. This is something I have definitely not figured out yet... Because we can't remove all stressors from life... and a lot of stress can also be caused by our minds/thoughts- for example when we worry about things that might (or most likely will actually NOT) happen. Also it's just not feasible to remove all stress and it could just result in us being very limited in what we can do. I am currently waiting for counselling yet again... which in the past wasn't hugely helpful. But I think there are lots of techniques- my aunt has recently recommended some meditation exercises etc. Everyone has to find their way. 

In terms of learning more about what it means to be autistic, I am sure other people are better at pointing out resources- I looked at lots of websites, but what I remember now is that the videos from 'Autism from the Inside' are quite nice: Autism From The Inside - YouTube There is a new one each week I think, but there are videos on lots of topics including on anxiety, burnout, masking etc. Which actually reminds me - Masking is also super exhausting... and something lots of autistic people don't consciously realise they are doing until after realising they are autistic. It also helped me a lot to connect to people on this community and to some of my friends who are autistic. And don't hesitate to reach out on here with questions etc. This community is very welcoming. 

I hope to see you and your daughter on the forums :). Take care!

Hi Ann thank you so much for your reply. 
we feel relived about the diagnosis because at least we now know what’s wrong and the reason why she feels and has felt since  a few years now. My concern is that my daughter has not yet worked this out herself somehow

at times she is overwhelmed with anxiety, stress  and panic or perhaps just sudden intense sadness.   I have recently for the first time been able to explain to her that due to her living with ASD she may feels these feeling much more intensively than people that live with no ASD and that she may unable to manage these feelings  like other people do  

i have explained that I sometime get sad, stressed and anxious but because I don’t live with ASD I manage these feeling differently although I may also feel down  

I believe that she needs to have a strategy when managing these feeling, understanding these feelings and herself better but I struggle to couch her with this as I do not have the right tools  at hands 

Perhaps  she would also benefit  to be part of this forum and share experiences with others

and yes your reply helped much! many many thanks - marcella 

Hi! I'm sorry to hear that your daughter is struggling. Her story reminds me of myself- I was diagnosed a few months ago at age 25 after receiving multiple other diagnoses (depression, eating disorders, suggestion of OCD, somatoform disorder of upper gastrointestinal tract etc.). I did very well academically but I also had to take 1.5 years off during my Bachelor due to my health (though the time off wasn't really helpful at time) and I am still struggling a lot at the moment. Stress/Anxiety is root cause for me but it took me a long time to realise that... and I have been going through repeated cycles of burnout (which is quite common in autistic people). 

The fact that your daughter mainly spends time in her room at the moment is not necessarily a bad thing. It might just be that she really needs some time to recharge and recuperate and for her that might mean just being on her own space, on her own. It's a fine balance but for autistic people, socialising and many activities just take a lot more effort than maybe for other people- that doesn't mean we might not enjoy these activities, but we may need to dose it carefully and make sure we have enough energy for it and do not use up too much- that's what is likely to happen when you are autistic but do not know it- you don't understand why you are different and might try to engage in similar activities/ a similar lifestyle to others, and it is very likely that you end up pushing yourself beyond your limits. It can take time to recover from burnout- months if not longer- I know from experience- I have had burnout several times now (only I didn't realise that is what it was- for me, the complicating factor is that it tends to result in unintentional weight loss which over time results in me being severely underweight on top of being exhausted and plagued by stress/anxiety) and it takes a long time to recover- I think I actually never fully recovered as I always ended up becoming active again too soon, either because I struggle to be inactive or because circumstances forced me to... I was off from work for 7 weeks last year as a result and I was nowhere near recovered by the end of it. Same now, I've been off for 3 weeks now (but it was really soon after a 1 month Christmas break) and I am a wreck - It also really depends on what you actually do during your 'recovery' time- in my experience it does help to have a period of complete downtime where I don't see anyone (or if I do, then not too long and in a way that I feel happy with) and just try to focus on myself.

Just out of interest- why do you think she is sad at the moment? Has she said so? or do you think she is sad because she is isolating herself? 

Also I just want to say there is nothing 'wrong' with your daughter- Being autistic doesn't mean we are broken or disordered. Just different. And there are a lot of strengths that come with being autistic too- I personally am very good at what I do (science), I persevere, have great focus (usually) and I am about to start a PhD as soon as I have recovered a little. It helps so much to be aware that you are autistic. The world is not designed for people like us and it takes some time to learn to navigate and what works for yourself- For me I know that I need to really learn to better manage stress/anxiety and my energy levels so that I can avoid this repeated burnout cycle, I don't even realise I overdo it until it's too late usually. It also takes time to find a balance of socialising that feels right- It's important to be kind to yourself. 

I do agree that it really helps to reach out to other autistic people. In terms of meeting friends, in my experience the best chance is through a shared interest. I had 0 friends at school but at university that changed and I made a few friends and it happened effortlessly! as there was a connection. Also it turns out a lot of my friends are neurodivergent (I just didn't know at time).  Does your daughter have any special interests or hobbies she enjoys? But again, I think give her time- this kind of thing takes energy- social interactions are important of course and it does help, but you need a baseline of energy to even be able to go out there and try and meet people. 

It's so good that she has now been diagnosed. There is no reason that autistic people cannot have very fulfilled lives - and I think it really helps to know so that you can start to accept yourself and figure out what works for you. 

I am not sure if any of this helps. Best, Ann 

Hi. My daughter has just been diagnosed with ASD. She is now 20 and unfortunately due to this late diagnosis she has been suffering with depression, panic attacks, anxiety for  the past 4 years. Although having counseling session with a psychologist for the past 4 years she has just been diagnosed at this late stage by a psychiatrist 
She has finished school with top grades triple  A* And decided to take a year off UNI but now she say she don’t want to study anymore 

she spends all her days in her room and has a solitary life. Whilst on one hand I am happy that at least we know what is wrong with her, on another i am really concerned about her leaving in isolation and being unwilling to do anything

i see that she is very sad 

I was wondering if anyone is able to advise of any forum or groups that meet for activities where I can perhaps take her to meet other young adult that are experiencing the same as she is

thank you, Marcella 

Congrats on the diagnosis!

You haven't mentioned how she's feeling about the diagnosis, It's totally normal to feel a range of emotions, reassure her it's OK to not know how she feels.

I don't know if she's a reader however Libby Scott has 4 books aimed at 9+, I highly recommend. She will most likely resonate with a lot that she writes about. Also shows her that being autistic doesn't stop you, Libby is autistic herself and an award-winning author.

Maybe speak to school and see if they have any older students with autism/ADHD. I used to have a couple younger kids who would come find me if they were having problems or just wanted a chat, they really liked having someone who understood that wasn't a teacher.

Also, know she has her diagnosis, she might want to find out what exam arrangements she is entitled to (I know, it's a little early as she's only 11 however never too early to get support in place). She might be able to do exams in a smaller room, get extra time, have rest breaks, etc.

Chris Packham also has a new documentary out 'inside our autistic minds', which is pretty good. Maybe you could watch that together.

Welcome! And feel free to post on here as much as you want

Alisha xx