My son has autism and I can't get him to leave t he house anymore. It's affecting all of us

2

Comments

  • baxbaxbax
    baxbaxbax Online Community Member Posts: 5 Listener
    We have support from CAMHS, neurodiversity, family focus and MAZE. Currently waiting on re referral back to Community Peads. Struggling with any support due to his high anxiety he cannot participate in any forms of support. He will  not engage in anything, even online or phone 
  • pollykelly
    pollykelly Online Community Member Posts: 25 Listener
    Is this a current thread, I’m confused as no date that I can see?
    just wanted to empathize with OP as I’m in similar situation with my daughter tho she is 17 and had LD as well as anxiety and autism.
    she’s not left the house since end of Feb 2023, tho we’ve had a breakthrough with her actually spending time downstairs recently.

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    @baxbaxbax I'm glad to hear you have them all to support you. Have they suggested anything to help get him involved? You said he doesn't engage with anything, did he have any hobbies he did love to do?

    @pollykelly Glad to hear you've had a breakthrough! :) 
  • Natureico
    Natureico Scope Member Posts: 30 Contributor
    Two things spring to mind here.
    One of my neighbours has a fourteen old son who is on the autistic spectrum, and he wouldn't leave the house, and in fact wouldn't leave his small recess bed, living almost exclusively behind a net curtain veil to his bed.
    Number one, it turned out he was getting secret bullying at school which he hadn't told his parents about,
    and that was the root of his problem.
    Number two, he was eventually persuaded to go out with his Dad for late evening walks after dark, around quiet, sleepy, leafy suburbs, which gradually reintroduced him again in stages to the big, outside, frightening world.
    Gentle persuasion and tender loving care ( TLC) were the antidotes and saving grace for this social withdrawal and exclusion from the everyday world.
    Don't give up hope and be very, very patient and forebearing.
  • johndtay
    johndtay Online Community Member Posts: 36 Connected
    I’ll keep it simple. I have autism and due to the world the way it is, I’ve stopped going out on my own really. I just don’t see the point.
  • pollykelly
    pollykelly Online Community Member Posts: 25 Listener
    johndtay said:
    I’ll keep it simple. I have autism and due to the world the way it is, I’ve stopped going out on my own really. I just don’t see the point.
    And that’s your choice but it’s not overly helpful in my daughters situation and I’m guessing other people who are desperate enough to come to this forum for advice.

    my daughter has LD, anxiety, OCD and has refused to get dressed or leave the house for almost 6 months.
    I can’t work and am struggling to pay the bills and mortgage and my Mental health is also suffering greatly from the isolation that this situation has caused.
    my daughter wants to control every aspect of my day to day life so this is not sustainable.
    please no more comments unless actual helpful to the situation

  • chiarieds
    chiarieds Online Community Member Posts: 16,688 Championing
    edited August 2023
    Hi @pollykelly - I don't know if you've looked back through this thread, but Scope aim to help parents of disabled children up to 18 years old, & I hope you might find it helpful as you too need much needed support. Please see: https://www.scope.org.uk/family-services/parents-connect/

  • pollykelly
    pollykelly Online Community Member Posts: 25 Listener
    chiarieds said:
    Hi @pollykelly - I don't know if you've looked back through this thread, but Scope aim to help parents of disabled children up to 18 years old, & I hope you might find it helpful as you too need much needed support. Please see: https://www.scope.org.uk/family-services/parents-connect/

    I have thanks.
    unfortunately my situation is at virtual crisis point so generic address is not useful at this time.
    my daughter rules me from the moment she wakes up to the moment she goes to bed.
    I am a prisoner in my own home, today my daughter wanted me to go back to bed at 1pm and put on my Pjs.
    when I said no she got aggressive and had to barricade myself in a room.
    I rang Camhs who rang emergency social worker, and guess what??
    nothing!!!
    either SW didn’t answer Camhs or said there was nothing they can do!!!!
    it wasn’t clear which, but either way SW refused to do anything!
  • pollykelly
    pollykelly Online Community Member Posts: 25 Listener
    edited August 2023
    Generic advice not address-now edited 
  • chiarieds
    chiarieds Online Community Member Posts: 16,688 Championing
    Sorry; sometimes generic advice is the best we can offer, & I know of parents that have found Parents Connect most helpful. Unfortunately this doesn't help you right now, & the situation is, as you say, untenable for yourself. Have you spoken to your GP as to the very real problems you're currently facing? Sorry I can't think of anything else.
  • pollykelly
    pollykelly Online Community Member Posts: 25 Listener
    chiarieds said:
    Sorry; sometimes generic advice is the best we can offer, & I know of parents that have found Parents Connect most helpful. Unfortunately this doesn't help you right now, & the situation is, as you say, untenable for yourself. Have you spoken to your GP as to the very real problems you're currently facing? Sorry I can't think of anything else.
    Generally not but I think sometimes we can pick up snippets of advice from generic advice.
    GP haven’t a clue, they can’t even prescribe the meds that she has (that she’s now refusing)

  • baxbaxbax
    baxbaxbax Online Community Member Posts: 5 Listener
    We are now looking into private psychiatrist.
    Finding any help for our son is non existent as he cannot engage in anything due to his anxiety. No one is offering us any.medication for his anxiety so this is our only route.

  • pollykelly
    pollykelly Online Community Member Posts: 25 Listener
    baxbaxbax said:
    We are now looking into private psychiatrist.
    Finding any help for our son is non existent as he cannot engage in anything due to his anxiety. No one is offering us any.medication for his anxiety so this is our only route.

    It’s so sad that there is so little specialist help.
    I was told there is just two hospital units that are suitable for my daughter, who has autism, LD, anxiety etc
    we are in Oxfordshire and the units are in Coventry and Newcastle, and there is a huge waiting list (8 spaces at Coventry, only 6 being used due to internal isolation (whatever that means) and I would imagine similar number in Newcastle, so 16 for whole country
  • Adrian_Scope
    Adrian_Scope Posts: 11,742 Online Community Programme Lead
    Hi @pollykelly, I'm so sorry to read how this is affecting you and I can certainly appreciate why generalist suggestions at this point aren't likely to be very helpful. I'm sure you will have tried this already, but on the off-chance that you haven't, can I suggest National Autistic Society's autism inpatient mental health casework service?

    I also know that it is not something you will want to hear, but your safety also has to be a priority and if at any point you feel like that might be in doubt, please think about contacting the police.
  • pollykelly
    pollykelly Online Community Member Posts: 25 Listener
    Thank you, I’ll check it out.
    we have had a more positive day today, let’s hope more to come.

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    edited August 2023
    It is good to hear you have had a more positive day @pollykelly. Here is to hoping more will come. I think it will be important to identify the following if you can:

    • Why does your daughter try to control your behaviour - what does she get out of it?
    • What is different between the difficult days and the more positive days?
    It sounds like you have been through a really difficult time recently and as @Adrian_Scope highlighted your safety and welfare are paramount too.

    I would like to highlight though that @johndtay was just sharing personal experience with autism. Many of us autistic people struggle to be motivated by going outside.

    Your thoughts and feelings as a family member are valid but so are those of autistic people (as I am sure you are already aware).

    It takes time to be able to open up and, hopefully, your daughter will be able to share her thoughts and feelings with you one day  :)
  • dogsandcats
    dogsandcats Online Community Member Posts: 4 Listener
    baxbaxbax said:
    We are now looking into private psychiatrist.
    Finding any help for our son is non existent as he cannot engage in anything due to his anxiety. No one is offering us any.medication for his anxiety so this is our only route.

    I don't know if I have too much to offer, other than just noting that you @baxbaxbax must be extremely strong to keeping going. Constantly being turned away by the authorities must be really heartbreaking. 

    I really hope things get better soon. 
  • baxbaxbax
    baxbaxbax Online Community Member Posts: 5 Listener
    Thank you @dogsandcats. 
  • johndtay
    johndtay Online Community Member Posts: 36 Connected
    One thing that might help is looking for the national autistic society in the uk for advice, support.
  • DC_Mum
    DC_Mum Online Community Member Posts: 3 Listener
    Hi River my 12 year old is like this, especially  during the holidays lack of routine from school is major for us.  I don't know if this will work for you but we do this. We do something every other day so she still gets her chill out day, we do things that not going to be for long period time. We always do stuff early in the morning so it's not ad busy and hardly any queues. 
    Avoid triggers for instance I can't gey mine into supermarket unless she knows it's for few items. 
    Speak to him and see what causes this and if he refuses true to remember how he reacted at certain things.  For example mine always stood away from queue, she would down at the floor, people got to close she would wander off, or if we were doing activity she would stop straight away and leave. 

Categories