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

Hello everyone and happy Friday.

It's with some relief that we can say 'hello', after our daughter was finally diagnosed with Autism and ADHD this week. We're treating the diagnosis as something for all of us to celebrate and are hopeful for she can get the support she needs at home and at school.

While we knew of Autism and ADHD, we only begun to learn about it properly when a SENDCO suggested our daughter be assessed and we went through the assessment process.

We have recommendations from the clinicians that we will pursue, but it would be lovely to hear if anyone (whatever your connection to Autism) have any suggestions on how we can help our 11yo be reassured she's still her, and to not allow herself to be put in a 'box', so to speak.

Thank you in advance and wishing you all a lovely weekend

Parents
  • 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

  • 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 

  • 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 

  • 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 

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