Struggling to work and support my daughter who is awaiting an ASD assessment. — Scope | Disability forum
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Struggling to work and support my daughter who is awaiting an ASD assessment.

lcs2008
lcs2008 Community member Posts: 8 Listener
edited October 2022 in Autism and neurodiversity
I have a daughter soon to be 18 who is in the middle of an ASD assessment. We have seen one person so far and are now waiting on an appointment to see the paediatrician. She has a weather phobia that primarily makes her anxious and when she has a meltdown she expresses autism traits. When this happens I talk to her and give her a cuddle which seems to help. Sometimes her mannerisms are like she has regressed in age too. I need to do two jobs to support us and its difficult at times to go when she depends on me so much to be around her. Is anyone else going through something similar?
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  • lcs2008
    lcs2008 Community member Posts: 8 Listener
    edited October 2022
    I have a daughter soon to be 18 who is in the middle of an ASD assessment. She is at home all the time as she suffers from anxiety which brings out her autism traits.  Weather particularly has an affect on her. She has a tendency to talk fine, then like a small child the next, also with mannerisms. Its like she regresses in age. I am learning to support her but all she needs at the end of the day is her mum and hugs and when she has a meltdown, after this I can calm her down.  I know she depends on me alot and likes it best when I am around but its not easy when I need to do two jobs to support us. Is anyone going through something similar?
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @lcs2008 Hello there, how are you and your daughter doing today? Good I hope.

    Thanks for reaching out and telling us a bit more about your current situation. That sounds difficult to negotiate, working two jobs alongside supporting your daughter so I can imagine how challenging it is with your time stretched in all different directions.

    Do you have any family or friends who could help support your daughter when she's anxious? I understand it needs to be someone who she feels comfortable with, but if you do, please consider asking them to help out sometimes to lighten the load. I'm sure they'd want to be there for you both.

    I also wondered if you'd checked your benefits eligibility (you can use the Turn2Us benefits calculator) to see if there's any monies you're potentially missing out on. 

    Your daughter may be entitled to Personal Independence Payment if she meets sufficient descriptors under the daily living and mobility activities and gets awarded enough points. Here's some Scope guidance around PIP for you to take a look at, plus our members are extremely knowledgeable about it too, so don't hesitate to give us a shout with any questions. 

    I'll admit, I'm not too clued up on Weather Phobia however it sounds very distressing for your daughter. Have you both explored the idea of therapy to help with that? Would it be worth discussing with your GP ahead of the paediatrician appointment? Although a lot of access to support hinges on getting a diagnosis, a conversation about what can be done to help might be useful.

    Here's a link to the National Autistic Society's information around Anxiety for you to read, if you haven't already. And also, please do take a look around our Autism and neurodiversity category as I'm sure you aren't alone. 

    Please let us know how you get on. And if you ever need to talk, vent or have some virtual company, we're here for you. 

    PS: Just to give you a heads up, I changed your thread title slightly to help others in a similar position spot your story and respond easier. 
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  • lcs2008
    lcs2008 Community member Posts: 8 Listener
    @Cher_Scope Thank you for your comments. I didnt realise my post appeared twice! We have sent off a PIP form so fingers cross that works out. She is on a waiting list for counselling but its 5 months. My partner is supportive, her dad she hardly sees and he is useless anyway. Her nan comes round and keeps her company/takes her out once a week.
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    edited October 2022
    @lcs2008 Don't worry about the duplicate post. One initially got caught in our spam filter (we have gremlins) but no harm done  :)

    Ah, brilliant about submitting a PIP claim. Keep us updated with how you get on. And, I'm sorry the wait for counselling is so lengthy. If ever you feel like your daughter's anxiety is heightening, try speaking with your GP to see if there is any way your referral could be expedited. Although it might be a long shot, it could be worth trying. 

    Thinking some more, are there any local support groups for people with ASD and their carers close to where you live? If you want us to help you find some, just give us a general idea of whereabouts in the country you are and we'll do some research. Speaking with others in the same position and feeling heard can come as a real relief, so lets keep our fingers crossed.
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  • Biblioklept
    Biblioklept Community member Posts: 4,185 Disability Gamechanger
    Does she like animals? I know it might not be practical but I was wondering if an emotional support dog (or other cuddly animal) might be an option?? As she can get some comfort when things are bad without it always needing to be from you. 
    I'm an autistic adult and still have to work on finding ways to regulate myself when things get bad. I can definitely 'age regress' when in meltdown and my ability to cope with things massively lessons when I'm overwhelmed or overstimulated too. 
  • lcs2008
    lcs2008 Community member Posts: 8 Listener
    Thank you for your comments. We’re based near Southampton. I would love to get her a pet to help with her anxiety but I can’t afford one. She’s getting to the point where She gets herself so wound up she makes herself unwell and doesn’t eat I’ve tried everything but she doesn’t want to help herself I’m at a loss and feel at some stage I’m not gonna be able to work.
  • lcs2008
    lcs2008 Community member Posts: 8 Listener
    UPDATE:  I feel i cannot work my evening job and worry about my day time job. My daughter cannot cope on her own when I am away from her, and this evening she had another meltdown when I was working and I came home in tears. how do I cope financially when HMRC already tell me I owe them several hundred pounds in tax credits so if I do quit my evening job to help my daughter, to help us, they will take that right from me to pay for my overpayment instead of my daughter. how is that right ?
  • poppy123456
    poppy123456 Community member Posts: 52,298 Disability Gamechanger
    Is your daughter still in full time non advanced education? if so are you claiming child tax credits for her? Unfortunately, the overpayment of tax credits does need to be repaid back. If they are reducing your tax credits now to repay that back maybe you can ring them to ask if they can take a little less money each month. They may refuse but you won't know unless you ask them.

    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • lcs2008
    lcs2008 Community member Posts: 8 Listener
    No she cannot cope with education or a job given her mental health at the moment. She had to quit college because of this, and she does on occasions go non verbal.  I am contesting the tax credit overpayment given my circumstances

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