My 16 year old daughter has just been diagnosed

My daughter has received her diagnosis after a 3 + year wait in the referral system. The signs were not obvious until she hit pubity which coincided with her returning to school after the Covid lockdown. She has since had alot of mental health struggles including self harm and eating disorders. The past 5 years have been an uphill struggle and finding the right support has been extremely difficult. She's managing better these days due to our own actions - I took a level 2 course in Understanding Autism and she had 18 months of private therapy.

After finally getting her assessment and diagnosis, I'm not sure how I feel. There's a definite sense of relief, mainly for her now knowing why she feels the way she does. A lot of things are starting to make sense now and hopefully people ( including the medical profession) can stop saying things like "  it's normal teenage behaviour " and "young people.all seem to struggle these days".  There is also a feeling of guilt, that we've let her down by not picking up on things sooner. If we had noticed the signs earlier, perhaps she would have got the diagnosis and proper support to help her through her school years. 

She's finished school now and somehow managed to sit and pass her GCSEs despite missing alot of school and being unable to revise properly. Without doubt, the system has let us down but I can't help feeling we (as parents) have also let her down. 

She's an amazing girl, loving, considering and smart so I have every faith she'll be ok but her stamina and ability to keep going are constantly compromised and I fear this will affect her future in college. 

I don't know what I'm asking for but any advice and guidance from parents would be hugely helpful. 

Thanks for reading x

  • It sounds like we are in very similar situations. My daughter is looking forward to college and wants to meet new people. I'm trying to be positive with her but I have my concerns that it may not live up to her expectations. She started a part time job in the summer which, again, she was enthusiastic about, however a couple of months in the exhaustion took over and she quit.

    Hopefully, for both our girls college will provide a fresh start and will have students more like them for them to mix with.

    At least now they have a diagnosis, the colleges should be able to offer support without us having to fight for it.

    All the best to you and your family.

  • Hello Zwee,

    Welcome to the online community! Sometimes, it can be difficult to recognise autistic traits in children, particularly in girls, which may be why your daughter wasn’t diagnosed until her teenage years. It’s wonderful to see how supportive you are as a mother, taking a Level 2 course in Understanding Autism and doing your best to learn more and support her.

    I am sure the community members will have lots of advice for you. In the meantime, you may find our After diagnosis and Family relationships sections useful.

    And congratulations to your daughter on passing her GCSEs. You must be very proud of her! 

    All the best,

    Karin Mod

  • Hi I have no advice really but I can relate, my daughter also 16 was diagnosed last month.  I felt huge sense of validation as for four years I was told my daughter is a little brat and has me wrapped around her finger.  It was a constant battle, I felt like nobody believed us, she went to four schools and also missed most of secondary school but somehow managed to pass her GCSE's. I am very proud of her as she has worked really hard.  I am worried about her starting college as she doesn't really have friends and this is her main struggle, making and maintaining friendships.