Autism and Aspergers
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My beautiful autistic adult son

emmuemmu Member Posts: 5 Listener
edited April 2019 in Autism and Aspergers
I just need to offload please. I don't expect help but just to share my story. My son is 24. He was my first child but from the day he was born he was different. He never stopped crying; had a super human energy and hallucinated. My now ex husband and I adored him. He didn't sleep and we took it in turns to walk miles in the night with him. The only things that soothed him were rain and cold wind on his face. For 24 years we have kept all the windows open and had no heating. 
He did nothing at school except pass exams with brilliant marks. Repeatedly we went to the doctor to ask for help with no sleep, screaming at night, hallucinations. The doctor fobbed us off. He has cost the NHS nothing. At 16 he was excluded from school because of his disruptive effect. He is gentle, funny and just on another wavelength. He was devasted to lose school and he kept just turning up until they threatened to phone the police.
8 years later I don't know how to cope anymore. My husband left and we divorced. I don't blame him. Our 20 year old daughter has done very well despite the huge amount of energy that was diverted to her brother. 
It seems that now he is over 18 the things we could not access when he was a child are much harder to reach.
My GP advised that (because he steals food) he will soon be in the prison system and then he can access help. I could cry forever with the pain of this. He is so lovely and so let down by everyone. I work 2 jobs so I can care for him in the afternoons and support us. We live a challenging life. No holidays or meals out. Very few friends because we don't  look at all normal And, with my son's huge craving for protein, I even cook fresh road kill. I know I sound odd. I feel like the path I have walked has made me odd. 
Now I am beginning to be afraid. We live on the edge. The house is trashed. My son loses money, phones, clothes. He can't help it. He would like to play football and work. He is not in receipt of any income, benefit or support and gets terrible anxiety and shuts down if we try to engage with the outside world. He is lonely and isolated. Such a clever man. He filled in a form and took out a big loan. The bailiffs come all the time but even they can see there is nothing left of value. 
At the risk of sounding like a victim I don't know what to do. I am 54 but look 10 years older. I have not slept more than 3 hours in 24 years. My day job is challenging and i look like hell. When I die I will leave a small asset to my son but who will look after him when he is not even assessed or on the radar?  He would just lose the money in a few hours and then be homeless. I often feel like handcuffing myself to the radiator in the GP's surgery and making them listen. Noone listened when we were reasonable. My son has complex needs and no- one would help.
Sorry. I just had to vent.

Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,732 Disability Gamechanger
    Hi @emmu I am so sorry to hear what has been happening. Please do not feel bad for offloading. I just wanted to quickly reply and let you know that your post has not been ignored. I will provide information shortly. We will do whatever we can to help :)
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,732 Disability Gamechanger
    I have found a variety of information, some information you may already know from your personal experience however I just wanted to include as much as I could find incase there is something which may be of use to you - Please let us know if you need any further help :)

    Emotional support for families with a disabled child
    Your whole family may need support with the emotional and practical sides of living as a family with a disabled child. There’s no right or wrong way to feel and everyone does things differently.
    How to balance caring for siblings of a disabled child

    Support groups for parents
    Support groups are good places to get practical and emotional advice from other parents with disabled children. There are groups which are for specific conditions. You may find that general support groups are also helpful.

    Managing your stress when caring for your disabled child

    Benefits and funding the extra costs of being disabled

    Leaving money in a will trust

    Support To Work Scheme

    Support to Work is an online and telephone support programme for disabled people in England and Wales who are applying for jobs.

    Eligibility

    • Support to Work is open to disabled people who:

    • 16 years or over

    • Looking for a paid job

    • Have internet, email and telephone or Skype access

    • Live in England or Wales

    Have you contacted the National Autistic Society? Helpline: 020 7833 2299
    Monday to Thursday 10am-4pm and Friday 9am-3pm
    Email: [email protected]

    There may be members of our community who have been or are currently experiencing what you are going through. Have a look at our Parents and Carers and Autism message boards. 

    I really hope these help and we are always here when you need to talk :)
    Disability Gamechanger - 2019
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    That's an awful lot to go through with no help or support from anyone!

    Is there any reasons why he doesn't claim any benefits in his own right? If he's unable to manage his own money/make phone calls etc then you could be his appointee. As all areas are a full Universal credit area then it's this you need to look at claiming for him. Sick/fit notes will be needed from his GP to be able to claim limited capability for work under UC.

    Then there's PIP, which has replaced DLA. It's not means tested and is awarded based on how your conditions affect you. I would most definitely think about claiming this because the money from this, if he's awarded can help with some care for him. https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/

    An advice centre near you will be a good place to start for the benefits side of things. Being his appointee will mean that you will take charge of all his benefits, form filling, phone calls and money etc. Details here.

    Have you had a needs assessment done? I would definitely have a think about getting this done as it would be helpful for you both. You'll need to get in touch with your local council's Social services department for this.  Details here. https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/needs-assessment









    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • RoddyRoddy Member Posts: 389 Pioneering
    emmu said:
    I just need to offload please. I don't expect help but just to share my story. My son is 24. He was my first child but from the day he was born he was different. He never stopped crying; had a super human energy and hallucinated. My now ex husband and I adored him. He didn't sleep and we took it in turns to walk miles in the night with him. The only things that soothed him were rain and cold wind on his face. For 24 years we have kept all the windows open and had no heating. 
    He did nothing at school except pass exams with brilliant marks. Repeatedly we went to the doctor to ask for help with no sleep, screaming at night, hallucinations. The doctor fobbed us off. He has cost the NHS nothing. At 16 he was excluded from school because of his disruptive effect. He is gentle, funny and just on another wavelength. He was devasted to lose school and he kept just turning up until they threatened to phone the police.
    8 years later I don't know how to cope anymore. My husband left and we divorced. I don't blame him. Our 20 year old daughter has done very well despite the huge amount of energy that was diverted to her brother. 
    It seems that now he is over 18 the things we could not access when he was a child are much harder to reach.
    My GP advised that (because he steals food) he will soon be in the prison system and then he can access help. I could cry forever with the pain of this. He is so lovely and so let down by everyone. I work 2 jobs so I can care for him in the afternoons and support us. We live a challenging life. No holidays or meals out. Very few friends because we don't  look at all normal And, with my son's huge craving for protein, I even cook fresh road kill. I know I sound odd. I feel like the path I have walked has made me odd. 
    Now I am beginning to be afraid. We live on the edge. The house is trashed. My son loses money, phones, clothes. He can't help it. He would like to play football and work. He is not in receipt of any income, benefit or support and gets terrible anxiety and shuts down if we try to engage with the outside world. He is lonely and isolated. Such a clever man. He filled in a form and took out a big loan. The bailiffs come all the time but even they can see there is nothing left of value. 
    At the risk of sounding like a victim I don't know what to do. I am 54 but look 10 years older. I have not slept more than 3 hours in 24 years. My day job is challenging and i look like hell. When I die I will leave a small asset to my son but who will look after him when he is not even assessed or on the radar?  He would just lose the money in a few hours and then be homeless. I often feel like handcuffing myself to the radiator in the GP's surgery and making them listen. Noone listened when we were reasonable. My son has complex needs and no- one would help.
    Sorry. I just had to vent.
    Hi @emmu

    I can totally relate to your 'story' as I am a single male parent of an Autistic child (now aged 28 years) who I raised single handed from aged 9 years until I got quite ill myself 4 years ago. I am now aged 61 years myself. It is true that I had the assistance of my daughter throughout this time, however she is only 2 years older than my son and he requires 24/7 supervision. Perhaps you will agree when I say that we do notice a 'small' change when our children go through adolescence and this is no different for all of us too. My own son for example has learned to monitor his own aggressive behaviour and feelings of anger and he is certainly less 'frightened' than he was as a child, though his condition is complex and unique to him as is so often the case with Autism...  I wish I could say that things are easy and help is at hand, but it seems to me that as soon as our children reach 'legal' adult age, they are treated as adults and all that goes with it. Certain areas of support are taken away and the somewhat 'protective wing' that Children Services provided have a detrimental affect once they've been removed. I have always argued, that just because my Son is 28, he is and will always most probably have the mind of child and as such he shouldn't be looked upon as being a 'responsible adult' in terms of the law... Anyway, on a brighter note, I consider my Son my very best friend too, and in my eyes he is the best Son that anybody could wish for. Everybody 'thinks' he's adorable, and I make them correct, BUT, nobody else can possibly imagine the extremities that we as a parent have to quite literally endure like it or not, and the sacrifices that we have to make. Our lives, are totally dictated by the care needs of our children and everything else takes second place and sometimes there is no second place to be had. We have no other option but to deal with 'everything' ourselves and by ourselves, as you have correctly stated. This is the stark reality, unfortunately, and it is difficult for any other person to truly understand how soul destroying it can make us feel .
  • emmuemmu Member Posts: 5 Listener
    Thank you so much Roddy for your full reply. It brought tears to my eyes to read how tenderly you speak of your boy. It was a sunny Easter day when I read your words and for a little while I sat in the sun and felt connected to one other person in the world who understood. Since then it has not been so sunny and we inch along negotiating every little thing. So veryvery tired. This is how it is. I wish you well x
  • Beverley_ScopeBeverley_Scope Scope Navigate service Posts: 84 Pioneering
    Hi @emmu
    I am so so sorry to hear of all the troubles that you have been through.  You obviously love your son very much and no one should have to go through what you have.  The system has truly let you down.

    Surely your son should be entitled to benefits of some kind.  I am sure you have already tried everything but why not ring the scope helpline for some advice.  They may be able to point you in the right direction for some help with benefits or your housing or even support in some way.  0808 800 3333.

    As I said you may have already done this but if you haven't it's worth a try.  You never know what they may come up with in guiding you to the right people.

    Again, I am sorry I cannot be of more help.   I really hope that something happens for you soon to make life a little easier.

    Take care,
    Beverley


    Beverley Davies
    Parent Advisor
    Navigate
  • WhileIBreathIHopeWhileIBreathIHope Posts: 216 Member
    Wow wish my parents were as devoted, sounds like professional help time.
    My sympathy 
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