Has anyone else brought up their daughter thinking autism is part of her make-up, but never getting any help?

I'm the mother of a 20 year old woman who I believe is very likely somewhere on the Autism spectrum. She struggled with behaviour at home during primary school, and school backed up a referral to CAMHS. Her assessment at the time basically said that we needed to attend parenting classes because we weren't dealing with her difficult behaviour correctly, and she was behaving oddly at school, at one point she was accused of deliberately baiting another pupil who bullied her. She was very bright, particularly at Maths, and very sporty, so I think school just thought she'd got a bit above herself. Basically, they thought she was spoiled and we were at fault. She had a very direct way of talking to other children that didn't go down well with some teachers and pupils.  She had some 1-1 counselling support from an amazing woman who worked in the school, and really benefitted from having the time to talk about and work on her feelings. Bullying started again immediately at secondary school, but they nipped it in the bud, and encouraged her sports interests so she settled down. She has a history of anxiety which became overwhelming during her last years at secondary school, when school sent her home on study leave because she was unmanageable in class: she was desperately unhappy, repeatedly being told she wasn't hitting the targets she could achieve, and consequently struggled when she went to 6th form. She continued to be extremely anxious and depressed, and eventually another CAMHS referral was done. She re-started her first year of A-Levels after having a leg operation, during which time she fell pregnant, although we didn't know. She concealed the pregnancy until it became obvious, and even then, would not countenance it as a possibility. She was in total denial until her baby was born, and I had been unable to persuade her to get any medical checks done until she was in labour.  To cut a long story short, the patterns of behaviour have not been helped by any of the interventions that have been made, limited as they are. She now has two children, the second another concealed pregnancy. She lives independently with them, but struggles with depression and anxiety still. She's exceptionally bright in some regards, and very immature in others. Im sure both pregnancies resulted in a complete lack of understudying of relationships and boundaries - despite this being something we talked about at home. She can discuss things and appear to understand, but cannot actually relate them to herself, or use information to make decisions about herself. She has struggled to engage with the limited support available, and does such a good job of caring for the children that no social or medical services are interested in supporting her. She's made numerous attempts at furthering her education, but just cant seem to manage the anxiety this brings with it. We've discussed the possibility of  autism, and she agrees it's likely. She cant bring herself to engage with any "parenting activities" because the anxiety of new people and groups is too much. She has difficulties with over-eating and drinking, and I worry about her and her babies, I just don't know how to help her for the best. Sometimes I have felt like an extremely poor parent, and at other times I can see so clearly the challenges she faces, but have been unable to persuade any professional, medical or education, to really support further intervention. Her last personal tutor at college was an amazing support to her, and tried so hard to help. I bumped into her recently and told me she felt sure that autism was the root of her challenges. We have a good relationship, and talk about things openly and regularly. Where do we start with looking for help? Where can I encourage my daughter to go (real or virtual)? Sorry for the massively long post - this is just a snapshot of stuff really, I could go on and on, just so desperate to help her make the best of life for her and her two little ones. 

Parents
  • she is now an adult so go with her to your GP and ask for an adult autism initial assessment and  diagnosis

    can you get her on here to talk about her issues ?

    heres the overall plan of what u do

    Make a list of reasons why u think u are autistic.or adhd or called weird/different

    includes relatives in your family who are autistic

    and a list of occasions when u have been called weird, autistic, different

    the list should be electronic ie so you can email it. Print out a copy and hand to your doctor with a cover letter asking to be referred for a preliminary autism assessment.

    he will read it in front of you ask a few questions and will refer you. Then you wait to be called for the initial assessment.

  • Hi aidie, I will try. Not sure adult autism diagnosis is even available in our area, but is that the best/only route? She's had some very bad experiences with the adult mental health services here, and just won't engage with them, so if that's where we're going to end up, may not be something she will feel able to do. I will show her the infographic - she'll find that easy to understand, and she does really like her GP, so that would be a good starting point. Thankyou

  • i got married, had kids education, everything without knowing I was autistic. I covered the anxiety with alcohol which is  a very common route for autistic.   I gave up alcohol completely 6-7 years ago. 

    I  admire your daughters sheer guts at raising 2 kids. Clearly you are crucial in this situation. I mean you are able to get through to her, help her raise her kids, and support her in times when she has a downer.

    I wish a social worker was around to keep her right as well because she does need help.

    there is this helpline of parent to parent support for her

    www.autism.org.uk/.../parent-to-parent

     

Reply
  • i got married, had kids education, everything without knowing I was autistic. I covered the anxiety with alcohol which is  a very common route for autistic.   I gave up alcohol completely 6-7 years ago. 

    I  admire your daughters sheer guts at raising 2 kids. Clearly you are crucial in this situation. I mean you are able to get through to her, help her raise her kids, and support her in times when she has a downer.

    I wish a social worker was around to keep her right as well because she does need help.

    there is this helpline of parent to parent support for her

    www.autism.org.uk/.../parent-to-parent

     

Children
  • Wow, that's a tough job done without knowing why life's so difficult, well done you. She's slipped into drink and drugs at various moments, but really doesn't want to. I admire her guts - often reminding her any single parent of two under-fives would be struggling, and that's OK. According to local NHS trust info, one concealed pregnancy is cause for concern, but two is a straight referral to mental health team. They gave her specialist midwife support after birth of second girl, but it was taken away within a week because she was "doing so well, there were no concerns". And the Health visitor told social work team that no intervention was required.

    I think I'm realising though that diagnosis might be important for her, even if it is just to access social work support. You're right, she does need help, and sometimes what I can do isn't enough. Thanks for the link, I'll share that with her.