Autistic 18 year old won't leave the house 😪 — Scope | Disability forum
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Autistic 18 year old won't leave the house 😪

omalleysdog
omalleysdog Community member Posts: 8 Connected
edited January 2022 in Autism and neurodiversity
Hi everyone 
Father of three boys  
The eldest is on the autistic spectrum,  and has become extremely anxious over the last few years 😪

He is 18 now and I am really struggling to get him to leave the house .
He dropped the few friends he had when he failed to finish his A levels 
 ( anxiety and embarrassment ) 
Just stays in his room now , awake most nights and sleeps most days 
He hasn't had a haircut for two years,  eats junk food  and generally takes no interest in his appearance 

I love him so much and I'm desperate to help him,  however,  I generally say the wrong thing and make matters worse  ! 

Anyone else going through this  ? 

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Comments

  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,487 Disability Gamechanger
    Hi @omalleysdog :) How are you doing? It's great to have you on the community, so thanks for joining!

    I'm sorry to hear about the situation you're having with your son. I don't have any personal experience of this unfortunately, so I've marked your post as unanswered to flag up to other members that you're still looking for people to share their own experiences. 

    I've also moved your post into our autism and neurodiversity category. You may want to visit our children, parents, and families category, as well. 

    You may also find reading this recent thread helpful :)

    I'm going to tag @L_Volunteer in here, too, as they may be able to offer you some useful insight.

    I know it can be difficult to feel as though you always say the wrong thing, but it is important to try and keep the lines of communication as open as you can. 

    I'll also have a look to see if I can find any helpful articles or other resources for you.
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  • poppy123456
    poppy123456 Community member Posts: 52,168 Disability Gamechanger
    Hi,
    It's perfectly normal for an Autistic person not to want to leave their home and stay in their bedroom, my daughter is exactly the same. When she was diagnosed in 2017 one of the questions i asked was about her having something to focus on and things to do...outside. I was asked why i wanted her to do that and was it for my benefit or hers. I was told that if she's happy doing what she wants to do then i should leave her do that. Autistic people do not like change.
    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.
  • omalleysdog
    omalleysdog Community member Posts: 8 Connected
    Thanks Tori and Poppy 
    I just want to ease his anxiety and help him in any way I can 
  • CoffeeFirst
    CoffeeFirst Scope Member Posts: 200 Pioneering
    @omalleysdog, your not alone, I’m going through something similar with my daughter. That said she does go to her course twice a week (although wont use buses), has few friends left from school hence no social life. The rest of the time she’s in her room.
    You mentioned reducing anxiety and whilst I hear you, it’s my daughters safe space and your son could perhaps feel the same way.
    Is there anything your son is interested in doing that could take him outdoors for perhaps an hour or two? Just thinking as a starting point. 
  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
    Hi @omalleysdog

    I'm really sorry to hear that you're going through such a challenging time, I can imagine it's quite hard to watch your son feel so anxious about things. 

    As @Tori_Scope said, sometimes it can feel as though we say the 'wrong' things or don't know what to say, but it sounds like you're doing a great job in keeping those communication channels open. It might also be worthwhile directly asking your son, what is it that you can do, to directly support/help him? Please make sure you're being compassionate to yourself too, because it sounds as though you're trying your hardest to do the right thing in this scenario.

    The National Autistic Society has a post that outlines anxiety and how this might impact autistic individuals. They state that it's important to understand what is causing the anxiety and try to uncover this. It seems as though reducing/managing the anxiety is a positive step, but it's also understanding how to do this. Does your son engage in/enjoy any activities that allow him to not experience anxiety as much as he would do being outside the house etc? I think small steps here are important and by keeping up the communication, this will benefit you and your son in the long term. 

    I hope you find the above useful and if you have any further questions, please just let us know.

    Libby
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  • omalleysdog
    omalleysdog Community member Posts: 8 Connected
    Thank you Coffee first and Libby, you are both very kind .
    My son , for want of a better word , has often been a bit  "awkward " in certain situations but was relatively social with his group of friends. 
    At school,  he wasn't one of the sporty, popular types,  but made friendships with the more academic ones who were nicer to him and not so caught up with popular culture...etc.
    These friends sailed through their A levels with ease,  unfortunately the pandemic destroyed the structure and order my son needed to progress. 
    Because of this he dropped all contact with these friends and removed himself from social media so they couldn't contact him .
    For the first year of his self imposed isolation I was desperately scared and feared there was a real danger of him harming himself,  we have (fingers crossed) got past that , though I am always very watchful for that dark cloud coming back over him .
    As it stands,  he is happy around the house , takes an active interest in politics, world affairs and reading literature. 
    I have managed to get him to go out on a few occasions with the family and he has the benefit of slightly younger twins to interact with. 
    On the downside he hasn't seen a dentist for two years and less importantly...no haircuts 

    I don't care at all about him meeting society's norms or fitting in if he doesn't want to 
    I just want him to be happy  and to lessen his anxiety. 
    My fear is , the more entrenched he becomes in not leaving the house,  the harder it will become to ever do so .
    I will happily support him ,financially,  emotionally and in any way I can for as long as I live .... but I worry so much what will / might happen when I have gone !
    I know people are in far , far worse situations than me and I genuinely appreciate your kindness ❤ 
  • Sandy_123
    Sandy_123 Scope Member Posts: 43,567 Disability Gamechanger
    Hi @omalleysdog sorry to read that your son won't leave the house, only accasionally and not keeping in touch with his freinds. I hope the advice has been helpful and the links. I have a grandson like that, he's only 4, he doesn't want to be away from home. If he stays here, obviously he's bought here being that age, but he doesn't want to.  He's OK while he's here, but he can't wait to go back, I'm wondering if he's on autism spectrum, but his parents don't want to discuss it,  he's been slower with his speech  then his brother and sister and has to think when in conversation.  The school are working with his speech, which has come on. I hope you are able to get your son out more.
  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
    Hi @omalleysdog,
    I think anxiety about leaving the house is such a topical issue right now, with the pandemic, too. I just want to offer some reassurance that you're doing a lot of good, even if it's not always easy to see. I saw that you have managed to get him out once or twice, which is incredible! Baby steps. I'm so glad that he also seems to be fairly content with how things are, but that doesn't make it any easier to watch, as a parent. I thought you might find this thread on worries about your disabled children as they get older to be useful -- you're definitely not alone in it all. The issue is that so much of the world feels unstructured right now, so your son probably finds the routine of staying home to be a safe one. One that's not likely to be disrupted, but it's my hope that it'll get easier with time. 

    How were dentists' visits before this happened? Was your dentist understanding and able to make adjustments? It's not easy, but it can definitely be something to work towards. If your son has a particular interest in literature, for example, perhaps you could make a trip to the bookstore together. If his twin siblings are fairly similar in age, it might be worth seeing if their friendship group could include your son on occasion. There's a chance that it would be less overwhelming for your son that way, too, if there are already a couple of familiar faces. Good luck & definitely keep being kind to yourself, as Libby has said above.
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • omalleysdog
    omalleysdog Community member Posts: 8 Connected
    Danielle _2022
    Thank you so much for your help and kind words 

    A couple of years ago be was a brown belt at kickboxing and ju-jitsu,  level 4 rock-climbing (instructor level) , brilliant at Parcour, 
    a very fit and healthy boy with traits of OCD, shyness and a bit awkward.
    Everything has snowballed in the last couple of years,  before he would have avoidance issues and we were late most places we went as he would usually have a bit of a wobble before leaving. 
    As he has got older he has become more self conscious and anxious. 
    I managed to get him to go out for the weekend of his birthday by booking the family in for a couple of days at Alton towers theme Park.... which was so good to see him laughing,  smiling and enjoying himself. 
    I will keep trying because I know that that boy is still in there ❤
    He would like to re- take his
    A levels,  but only on his terms,  at home online , which will be a very difficult task and I am fearful if it doesn't go well... it will further set him back and undermine his confidence  .
    Really don't know what to do for the best..... but am so grateful for the brilliant suggestions 😊 

  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
    Wow, that’s so impressive about all of the fitness stuff, I really hope that he’ll be able to find his way back there someday. My brother is also a black belt in karate, though he hasn’t trained in years.

    I can totally relate to his feelings of anxiety & it can be tough not to become overwhelmed by that sometimes, particularly when the world doesn’t ever seem to make an effort to understand you as it is, which might be a familiar feeling for your son. I’m sorry that things have gotten harder in recent years, but it’s so lovely to know that he can still step outside of that comfort zone on occasions like his birthday. He sounds wonderful & that is a total credit to you.

    It’s good that he has plans for the future around his A-Levels & I really hope that you’re given support in making the adjustments, so that this is more accessible to him. I understand what you mean about the results, it can be impossibly difficult when you don’t have control over the outcome of these things, but let’s not forget that he has a strong support system at home & I have every faith that you could make it through. I mean, you’ve already made it this far. That in itself is worth celebrating every day. 

    If you ever need any support, you’re always welcome here <3
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • omalleysdog
    omalleysdog Community member Posts: 8 Connected
    @Danielle_2022 and @Libby_Scope
    Thank you so much for your time , advice and kindness
    Reading through your comments has really helped me ... I was on a pretty lonely path before....But I feel I am in good company now .....and certainly not alone 

    Because of this, I have  contacted my local authority who have allocated a case worker to help my son and are going to make provisions 
    To help him re take his A levels and sit his exams 

    In fact when they checked back over his educational health care plan ... they realised he had slipped through the cracks during the pandemic and are going to remedy this 

    They have also given us links to local groups to help the whole family 

    I really cannot put into words how grateful I am to the lovely people in this group who have taken the time to respond to me 
    ( usually end up with tears in my eyes when I read them)

    I will stay in community and hope to repay the kindness I have been given ❤ 
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello @omalleysdog

    Thanks for getting back to us, I hope you are well this morning. I'm glad to see that you have found the responses from @Danielle_2022 helpful :) 

    It's good to hear that your local authority have allocated a case worker, and hopefully that leads to better things for you and your son soon, you'll have to update us on progress :) 

    I look forward to hopefully seeing you on the community more going forward.
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  • CAP
    CAP Community member Posts: 4 Listener
    Please do invite your son to any of our online Zoom sessions - I can send you a free link (www.inclusiveonlineactivities.com) we aim to have fun in every session. He would be very welcome.
  • emmal3417
    emmal3417 Community member Posts: 6 Listener
    Hi everyone 
    Father of three boys  
    The eldest is on the autistic spectrum,  and has become extremely anxious over the last few years 😪

    He is 18 now and I am really struggling to get him to leave the house .
    He dropped the few friends he had when he failed to finish his A levels 
     ( anxiety and embarrassment ) 
    Just stays in his room now , awake most nights and sleeps most days 
    He hasn't had a haircut for two years,  eats junk food  and generally takes no interest in his appearance 

    I love him so much and I'm desperate to help him,  however,  I generally say the wrong thing and make matters worse  ! 

    Anyone else going through this  ? 

    Hi, I have no advice but I wanted to say you are not alone. my almost 17year old is going through very similar. He no longer goes to college or out of the house. I am at a loss myself. 
  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
    Hiya @emmal3417,
    I’m sorry to hear that you’re in a similar situation, though I hope it’s helpful to know that you’re absolutely not alone. Does your son have any hobbies or interests that might encourage him out of the house, even for a short while?

    How have things been for your son since the last update, @omalleysdog?
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • emmal3417
    emmal3417 Community member Posts: 6 Listener
    Hiya @emmal3417,
    I’m sorry to hear that you’re in a similar situation, though I hope it’s helpful to know that you’re absolutely not alone. Does your son have any hobbies or interests that might encourage him out of the house, even for a short while?

    How have things been for your son since the last update, @omalleysdog?
    Thank you for your reply. He used to go to scouts then explorers but gave it up. He learnt to play guitar but has stopped. I looked at his internet history and it’s just hours and hours of anime. I feel like I don’t know him at all, though I know most teens are a little like that. 
  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
    @emmal3417,
    It’s a shame that he isn’t doing many of his hobbies anymore, but I’m hopeful that he’ll find his way back to them, with time. I’m not a parent myself but I know that my family still feels the same way & all of the children are in our twenties now! If he likes anime, perhaps you could watch something together? It might not help to get him out of the house, but it would be a start to rebuilding your relationship, at least. Also, has he ever tried cosplaying? I have lots of friends that enjoy it and it’s a big community, so maybe starting out gently at home would encourage him to join in-person events someday :)
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • omalleysdog
    omalleysdog Community member Posts: 8 Connected
    Danielle_2022

    I am sorry you are in the same situation 
    It is heartbreaking.... I am just trying to take small steps with my son,  to try and find something he would like to do or somewhere he would like to go. 
    If I have any success.... no matter how minor,  I will be sure to let you know 
    🤞
  • swallow1277
    swallow1277 Community member Posts: 10 Listener
    Hi @omalleysdog, wondered if you had any updates on your son. I'm currently in exactly the same situation with my 18 year-old son - he's recently finished his A-Levels (he just about managed to get through them despite being diagnosed with ASD in March after suffering with anxiety and depression). His one friend from school has now gone off to uni and my son is showing no signs of wanting to work or continue with any kind of study. He doesn't want to leave the house at all and plays online games and watches Netflix all day. I'm not pushing things too hard for now as he's been through hell over the last year but at the same time I feel the longer he stays inside the house the more difficult it will be for him to eventually go out. It's so difficult as I don't want to make him feel uncomfortable by going on and on at him to do things outside the house (I've already talked to him at various times about him possibly getting a saturday/part-time job, joining a gym and other various activities outside the home) but nor do I want to allow him to get so used to staying indoors that going out eventually becomes a major hurdle. Just wanted to let you know you and your son are not alone and seeing your post made me realise that we're not alone so thank you
  • Albus_Scope
    Albus_Scope Posts: 2,883 Scope online community team
    Hi there @swallow1277, I just wanted to say welcome to the community and thank you so much for sharing your story.

    I'm late diagnosed autistic and I can emapthise so much with your son.  It's such a tricky time for anyone at that age anyway, more so for someone who lives in a world that doesn't fully cater for their unique mind.  The thing that really worked for me was music, but I understand each person is different. 

     If he's really into his gaming, maybe look around for local gaming cafes to visit?  
    Albus (he/him)

    Online Community Coordinator @ Scope

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