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Any guidance would be grateful

Luna

Any help & guidance  with my 16 year old daughter. We are waiting on diagnosis through Right to choose f . My diagnosis on research and changes in herself  Autistic. I believe she as been masking for 2 years now which I missed the signs unfortunately the lady 6 months have got really bad to point she can’t attend school as it’s to much for her to cope with . Lights , Nosie , socially interacting it completely exhausting for her school have been really good but her in reduced timetable which when discussed with her she was happy ! She went in once was to much so she hadn’t been to school now for 2 months which she only as 12 weeks left & only a couple of exams to sit in may which I am not sure she is going to be able to sit them but she said she will . Our home is her safe place and relaxed . It’s extremely hard to get to out as she finds exhausting even for walk .completely concerned she can’t live her life like this and how can get help & support to try and help her the last 6 months have been extremely difficult! She didn’t like attending family gatherings I she hides herself away form world which is worrying. We have had counselling form the loucal authority which was really good but the lady went of sick for 3 weeks then didn’t come back ! Then we had another one & the same thing happened again then my daughter lost trust in the system which is such a same .. stuck at the crossroads wandering which way to go ! Any help and support would be so grateful 

Parents

  • Hello Luna, welcome to our Community.

    I am sorry to hear about your Daughter's situation.  I am glad that it sounds like the School have been working with your best efforts to try and support her.

    It is always super-unsettling to experience personnel changes like you described with the local authority counselling.  Even so, it is worth trying to persevere with that route, if possible, as it can keep the needs assessed range of Council services available to your Daughter (possibly until age 19 or 25 years depending on your area).  I was thinking ahead also, once you participate in and receive the assessment report from her Right To Choose assessment provider - it would be good to update both her GP and her Council Team contact accordingly and have a renewed discussion with her School too.

    In our County there are a few support groups run by families with Autistic children and young people (our County has a very long waiting list for NHS assessment for both children and adults - so more people are using the Right To Choose route these days).  I wondered if you might find a support group like that in your area.

    In our area, some cinemas, theatres and museums have autism-friendly openings - which can be helpful for families encouraging young people to become comfortable with places beyond home.

    Our area doesn't have a National Autistic Society Branch nearby - but you might be more fortunate - you can find out here:

    https://www.autism.org.uk/what-we-do/branches

    When it comes to activities being exhausting - I have found that is something to approach in three phases: 1) prepare well then rest, 2) attend the event, 3) then try to schedule a recuperation day for the following day.

    (E.g. that recuperation day is what I am aiming for today - as I attended an Autism-friendly event at a museum yesterday morning).

    Best wishes.

Reply

  • Hello Luna, welcome to our Community.

    I am sorry to hear about your Daughter's situation.  I am glad that it sounds like the School have been working with your best efforts to try and support her.

    It is always super-unsettling to experience personnel changes like you described with the local authority counselling.  Even so, it is worth trying to persevere with that route, if possible, as it can keep the needs assessed range of Council services available to your Daughter (possibly until age 19 or 25 years depending on your area).  I was thinking ahead also, once you participate in and receive the assessment report from her Right To Choose assessment provider - it would be good to update both her GP and her Council Team contact accordingly and have a renewed discussion with her School too.

    In our County there are a few support groups run by families with Autistic children and young people (our County has a very long waiting list for NHS assessment for both children and adults - so more people are using the Right To Choose route these days).  I wondered if you might find a support group like that in your area.

    In our area, some cinemas, theatres and museums have autism-friendly openings - which can be helpful for families encouraging young people to become comfortable with places beyond home.

    Our area doesn't have a National Autistic Society Branch nearby - but you might be more fortunate - you can find out here:

    https://www.autism.org.uk/what-we-do/branches

    When it comes to activities being exhausting - I have found that is something to approach in three phases: 1) prepare well then rest, 2) attend the event, 3) then try to schedule a recuperation day for the following day.

    (E.g. that recuperation day is what I am aiming for today - as I attended an Autism-friendly event at a museum yesterday morning).

    Best wishes.

Children
  • in reply to DormouseAtRest_25

    Thank you for support it’s very appreciated just talking to someone about it really helps ! Really glad I found this site so helpful.