Autism and Aspergers
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My autistic son will not leave the house/go outside - can anyone help?

ElonerEloner Member Posts: 2 Listener
edited April 2019 in Autism and Aspergers
Can anyone help. I have an autistic 20 year old son. He has always been very anxious and we have strategies and medication in place to help him. He hasn't been to school since he was 13 years old. He will not leave the house, he would be happy to never leave and just use his computer etc. I feel this is unhealthy. He likes swimming, playing ball, walking , etc but now can't access anything out of the home . He hates being away from me, and just refuses to do anything. I want him to get to the stage of being able to cope without me, be a little independent. I am an older parent and I am terrified something happens to me how will he cope. I have had help from O/T's, PA's etc but nobody can get him to leave the house. I just don't know what to do. I do not want him to go into residential as it would be cruel as he would be lost. Don't get me wrong, if he wanted to I would be so happy for him. I know he is happy staying home, but he can't even go into the garden now. I have spent the last seven years in the house with him as I can't leave him alone,, life is passing us by and it is so sad because there's so much out there to enjoy. My son is verbal, friendly, a big strapping 6' 1'' young man. He's terrified of children and babies, so that is another reason he doesn't go out, we also cannot have anything with youngsters on the tv. His dad is in poor health, so I am alone most of the time with my son as his full time carer. I love him so much, I just want to help him have a nice life and not to worry about me. I am at a loss as what to do. 

Replies

  • Liam_AlumniLiam_Alumni Scope alumni Posts: 1,113 Pioneering
    Hi @Eloner,

    Welcome to Scope's online community! It's great to have you on board.

    I've moved your post into our Ask an ASD advisor category, where members of our community, along with our dedicated advisor, may be able to help.

    @VioletFenn, do you have any ideas?
    Liam
  • VioletFennVioletFenn Member Posts: 124 Pioneering
    Hi @Eloner (and thanks for the tag, @LiamO_Dell )

    Gosh, what a difficult situation you're in and bless your heart for being so determined to help your boy. Can I ask what other support (if any) you have - does he see the GP for medication, has he been through the CAMHS system at all?

    The one thing I always advise people is to check out your local ASD support group, because they really are always the font of knowledge re what kind of help you might be able to access. And if nothing else, they might be able to offer you some support for yourself. Google 'asd support group' and your area - or let us know whereabouts you are and I'll try to find some info for you. 

    Wanting your son to have his best life possible is all anyone can aim for and you're clearly doing everything you can. He's very lucky to have you as his mum :) 

    Violet
    ASD adviser, Scope
  • [Deleted User][Deleted User] Posts: 689 Listener
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  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    Hi @Eloner how are you and your son getting on?
    Scope
    Senior online community officer
  • jan_dale99jan_dale99 Member Posts: 2 Listener
    Hi Eloner I have just registered on this site after reading your entry about your son. I cannot believe the similarities to our stories! My son is 20 and gave up school(due to anxiety)at same age. We have struggled ever since to help him as he wouldnt leave the house for years - But have faith it will happen albeit Very very slowly. Our son still has anxiety but manages to go out most weeks (once only) but it has been a long road to get this far! I commend you for being there for him and  I agree residential would be crushing for our sons. Ifnore people who criticise you - they dont walk in our shoes! I hope you get to read this as I dont want you to give up on him as hard as it is every day. Take care and look after yourself too. p.s. I had to give up my job years ago to support my son.
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Welcome to the community, @jan_dale99!

    I hope you get to chat with @Eloner. You may also be interested in our other ASD-related discussions, and our parents and carers category.
  • jobrooks2116jobrooks2116 Member Posts: 1 Listener
    My son is 17 and has been out of school since he was 11. He is much the same as your sons, won't take medication, wont take to anyone or except any support from anyone. so we are very alone and also very worried about the future. 
  • jolindajolinda Member Posts: 4 Listener
    Hi My son is nearly 20 and also been out of school since 13. He does not like family events, birthdays christmas. Will not attended anything anymore. So extended family have basically forgotten about him....Not interested in seeing friends face to face only communicates with his gaming friends via internet. At the moment he only leaves the house with me no one else can be in our company. He wont come. Have tried lovan and he took it for the last three years. Tiny bit of improvement when using a very high dose. So now weaning off. Im also very worried about the future. Thinking about moving to a more rural place since everyone in this suburb has forgotten him anyway. We live in australia. Nice to hear im not alone though 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Welcome to the community @jobrooks2116 and @jolinda, and thank you for sharing your experiences with us. I hope it helps to know that you're not alone- you may be interested in our other ASD discussions too.
  • jolindajolinda Member Posts: 4 Listener
  • patbecky89patbecky89 Member Posts: 1 Listener
    Hello,  I have a 27 yo son with Down syndrome/Autism. With severe Anxiety. We had to take him out of program because of it. Right now I'm learning all about sensory and diet. I can get him to go for morning rides. But still cannot get him to a store for years now. Baby steps. I'm here if you want to talk.
  • jolindajolinda Member Posts: 4 Listener
    Hi 😊 today on my day off from work we are cleaning my sons room and getting a new desk for his computer. So he is getting ready to come to the shop with me to pick one up. He has not been out for a while now. 
    I work 3 days a week wed - fri and also recieve a part carer payment for my son. I have tried theropy with him and he does not engage . I am starting to feel like i should stop or cut down working to put more time into helping him. So i was wondering do other parents work aswell as caring for an adult son or daughter? And how do you cope? I dont have any help from family members 

  • Rainbowwarrior637Rainbowwarrior637 Member Posts: 3 Listener
    my son is the same and I'm starting to think residential is actually better for him and would make him independant, all the authorities knows what he has but he refuses to be diagnosed, he doesn't leave the house at all except to go jogging and is up all night too. often disturbing everyone and leaving a mess, he's 28 and I don't get any allowance for him because of this and he gets no income. I can't even go away.
  • janemtrohearjanemtrohear Member Posts: 8 Connected
    Hi,

    I identify with so much of the posts in this thread. My Asperger daughter is 20 & only leaves the house once a week to visit her cousin & her 2 toddler sons. She plays on her Switch & Wii U all day & has no real life friends locally. She stays in her bedroom for 99% of her day & only engages with me & ignores her Dad most of the time. 
    It is very worrying as before the anxiety started 3 years ago she was doing really well at her special school. 
  • AelonRhiadraAelonRhiadra Member Posts: 4 Listener
    Hi, as an Aspie myself I'd like to share some things that help me when I go outside. 
    The first is a good of noise cancelling earbuds with familiar music to reduce the noise and help keep me calm and grounded and reduce how often I'm bothered by sales people. As they can see I can't hear them. 

    Second is a plan. Where I'm going  when. What I'm going to do there. Who I'm going to meet  I plan things extensively and even what to do if something is wrong.

    The third thing is someone I can call if I get overwhelmed  Usually mum. 
  • ElonerEloner Member Posts: 2 Listener
    Hello everyone sorry,
     I haven't been back for a while. Things haven't changed. I am getting help from social services, they are sending people in three times a week. One company comes in twice a week for three hours but in all honesty, they are a babysitting service and have no knowledge of Autism so they sit with him whilst I go shopping, the second company, well I have heard nothing from them since December the last time anyone came. My son still hasn't left the house. I have tried so many strategies, so many companies, have been let down by the Autistic Society badly, but still plodding on. My husband's health has deteriorated so he is only working part-time so I am going to cancel the carers who visit as it's a waste of time, I am paying money for nothing.
    My son is happier, he has started a new medication which seems to be working, he is not as anxious as he was, and is not having as many 'blow-ups' which is wonderful. He still won't go into the garden though. We shall persevere on, I'm not giving up.
    Thank you to everyone who has given support and advice it means a lot. Thank you again x
     
  • wildlifewildlife Member Posts: 1,314 Pioneering
    Hi @Eloner, Glad you decided to pop in here again. As you can see there are other people in similar circumstances to yourself who understand what you're going through. Mine is slightly different. We have an adopted son who was physically abused by his Birth Mother  up to the age of 18 months when we fostered him. He was very quiet and withdrawn with no feelings for anyone or anything but we put it down to his early experiences. However the years rolled by and having fostered another boy who was a real handful our attention was focussed on getting through every day. We had no help as we adopted both of them. When the quiet son hit his teens it became apparent he was not like other boys his age. Still withdrawn but then he was targeted by bullies and even the police arrested him for something he didn't do. From then on he started drinking and having angry out bursts of uncontrollable and sometimes bazaar behaviour. He is 35 now and has been diagnosed with Learning Difficulties but only through the job centre with tests he was forced to do to get any benefit. He has no other diagnosis but we're pretty sure he has autism or ASD. He lives in his own place 10 minutes from us and his Dad cares for him. He goes over every morning to make sure he has food in and pays his bills etc. He is very much like the other "children" mentioned on here. Spends hours in his bedroom on his laptop, doesn't go out on his own, his life is just empty. He won't engage with Doctors to get a proper diagnosis so there's no help available. My hubby is 71 now and can't look after him for ever. I don't see him much as he doesn't relate to females at all. This country has got it all wrong with the attitude that the person themselves has to take the initiative to get help. If they won't or can't they're left with nothing.    
  • jolindajolinda Member Posts: 4 Listener
    Hi everyone after long thought I have made the decision to give up my job to be there more for my son. Mostly for company and emotional support for him.  My job was very draining and I had nothing left to help him.  It's really hard to get ahead these days. It has been great reading similar stories to ours. 😊 
  • shellyyparkshellyypark Member Posts: 1 Listener
    Hi all. Thank you for sharing your stories. My son has just turned 23 and was diagnosed ASD -Aspergers just before Christmas last year. He went through main stream school as an ignorant, moodly laxidazical teenager with anger issues. So we had absolutely no help from anywhere friends or family. Now the diagnosis explains it and apart from what seem empty promises from the various medical and social services we are still not really getting help. I ended up making him homeless after a disagreement during which he threatened to put me in hospital if i didnt leave him alone. He is not 'happy' but he is content in his room, eating when he wants, sleeping when he wants and playing his computor games when he wants. He goes out several times a week to a little of the main street cafe to eat. The chap there has many vunerable people pop in throughout the day and holds a tab for him which we top up weekly so he can just go in anytime he wants even if it is just to sit during an anxiety attack or just because. The chap sits with him to chat, and makes him feel safe. It has taken 2 years of regular visits together to get here.

    He would still rather not go out of his room. But he also understands its no life. He doesnt eved ask anyone for help including the carer services provided by the housing company. His social worker is at her whits end, as am I. 

    I just wanted go share and say that life before diagnosis was hard as he was so misunderstood but no-one would believe me that it was more. Now...... no-one seems to care, well now its just an excuse for his previous bad behaviour. It is so sad that our older children are left unsupported because they want and need a different type of life to 'normal' adults. It feels like they dont fit so they dont matter. And the support we recieve, ok, so, I really mean don't recieve is just awful.

    Be strong people, its our love and patience that is the thing that will reach them in the end. God bless you x
  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Hi @Eloner thank you for updating us. How is everything going now? Sorry to hear about your husband, how is he doing now? Happy to hear your son is feeling happier. :) I'll tag in @SparkleSheffieldAutismAdvisors for any suggestions they may have.
  • Antonia_AlumniAntonia_Alumni Scope alumni Posts: 1,781 Pioneering
    Welcome to the community @shellyypark thank you for sharing this with us. Have been in touch with your local council to see if there's any other support or services they can offer?
  • SparkleSheffieldAutismAdvisorsSparkleSheffieldAutismAdvisors Member Posts: 32 Pioneering
    Hi @Eloner and @shellyypark!

    Please do let us know if there's anything specific we can advise on, we'll be happy to share any knowledge we have if it helps.

    Also, to both of you, you are experts in your child's care (no matter how old they get!), but know that you are not alone and there are others out there who are in similar situations and can offer advice. Every day is a small step, keep going! 
  • CazccCazcc Member Posts: 9 Connected
    Hi @Eloner sounds like you have support online at least which is terrific.  Such a relief to know other parents understand situation of parents in similar position. I am one of those.  I have 2 teenage sons on autism spectrum, high functioning but with loads of anxiety.  When I read your news and that of others I cried to think other people are experiencing the same difficulties and there are other children like mine experiencing difficulties.  
    My husband and I have struggled through many years, with our children only diagnosed at 14 and 12.  It took 3 years to obtain diagnosis as my eldest son would not attend the medical sessions.   It has not been any easier since, as anxiety has persisted.  Very little help from anyone since. That said, our life is not all bad, even though I can identify what my children do as being the same as your son.  There is NDIS in Australia now which is helpful.
    I have tried homeschooling in various forms along with trying to have my children return to school, with a lot of failures in my husband and my eyes but now achieving some breakthroughs.  I have taken all stress away and said they can just learn to cook starting with toaster, microwave, heating in oven, and soon the slow cooker and then cooking a roast in oven as well hopefully. Next will be some gardening when I make the garden neat again as I discovered my eldest son does not like a messy backyard and wants green grass.  I said fine as long as he mows it!  They both play never ending computers with online friends which I allow during night during school holidays only now.  I encourage a relaxed homeschooling program other times.  They do have some friends visit occasionally who were neighbours.  My children are starting to take care of their dress codes and appearance now.  Slow progress but such a delight!  So I am hopeful what the future will bring but nervous at the same time.  They stay indoors without contact in person of friends.  They have us though and I love them dearly with and without their challenges.
    Re work my husband and I have struggled through various moments of my husband's employment and unemployment in parts all the while I struggled running a business while homeschooling.  Best thing we did was for my husband to work full time and I struggled through with my business which is a profession, as I can now offer my children a job in administration and who knows what the world will bring.  It is a starting point and I can see happiness and achievement now and around the corner. 
    Family support has been listening to us but on the whole they have proven to be very ignorant in views and understanding of autism.  So the struggle to be heard and understood for my children and us as a family is stressful.  Nevertheless I have hope and I have realised the happier I am as a parent the happier my children are, as is any child.  So trying my best to reach out (not my usual way) to others in same position for understanding and support.  Hopefully I have given you some hope as you have made me realise there is support out there and lovely people to connect with.  Enjoy your life with your child and friends and family.    
  • caro99caro99 Member Posts: 1 Listener
    Reading these comments has made me realise I’m not alone - but also made me sad for what I’ve lost.

    My son is 17 and was diagnosed as high functioning ASD when he was 16. He managed in a fashion all the way through school - they thought he was arrogant, lazy, and opinionated but because he was in the top sets for everything we all thought he was doing okay. Year 11 was a nightmare and he refused to sit several exams and his attendance was really poor (he’d had 100% before this). Over the last 2 years he’s given up sport, won’t go on family outings, refuses to go to college or get a job. He still has friends but they are all growing up and moving on and he seems stuck at home. He says it’s safer never to attempt anything, that way things can’t go wrong. He says he’s happy but I don’t think he is. I can’t see a future for him.

    the positive is that we built a summer house at the bottom of the garden and the Xbox and tv are in there - so he gets up at lunchtime, showers and dresses and relocates to the garden until the early hours when he goes to bed. So a routine of sorts.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Hi @caro99 and a warm welcome to the community. Sorry to hear things seem a bit bleak at the moment. Are you (and your son) getting much support at all at the moment?

    Glad that things are a bit rosier for you @Cazcc and thanks for reaching out to lend support where you can. :smile:
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • CazccCazcc Member Posts: 9 Connected
    Thanks for your encouragement Adrian. I feel a sense of belonging among like-minded people on the Scope site, some in a similar predicament as myself (with medical condition) and children with autism.  I provide mentorship to a nephew also who has chronic mental illness.  It can be tough but when I am feeling well can offer support, I hope, to others. Have a great day.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Thank you for all the help you're offering @Cazcc. I'm sure it's very much appreciated. We have many in similar situations across the community and it's always great when our members can club together and offer each other support.
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
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