Autistic 18 year old won't leave the house 😪 - Page 2 — Scope | Disability forum
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Autistic 18 year old won't leave the house 😪

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  • swallow1277
    swallow1277 Community member Posts: 10 Listener
    Hi @Albus_Scope thanks for the reply, it's really good to hear from someone who understands what my son is going through - I try my hardest to imagine how the world feels to him but I'm still only in the very early stages of trying to understand and learn. Thanks for sharing that you were also late diagnosed. I feel my son has experienced so much anxiety while masking and simply surviving for so many years that he's now totally burnt out, and that him not wanting to leave the house is partly due to anxiety and also possibly a need to heal and decompress after years of masking and "feeling stupid" (his words). Thanks for the helpful suggestion about him trying a gaming cafe - unfortunately we live in quite a rural area where there are not many services or facilities. I'm suggesting to him every now and then that now he's received his diagnosis he might like to become involved with the autistic online community but so far he's uninterested and says his diagnosis doesn't mean anything to him as it doesn't change anything☹ again I don't want to go on too much at him so all I can do is suggest things casually from time to time and hope it plants a seed of interest. I'm so glad that you've found music helps you. Like you say the transition from school to life after school is massive for anyone, I can see he feels adrift and it's extremely hard to know how to help when I can't do it for him, he somehow needs to find his own way. Thanks again for reaching out🙂 
  • sarahbadr
    sarahbadr Scope Member Posts: 9 Connected
    I'm not sure whether you've seen this already, but Mind have quite a lot of information on the assistance available for people with autism here: https://www.mind.org.uk/about-us/our-policy-work/equality-and-human-rights/autism-and-mental-health/. Your local authority's adult social services department might also be able to offer advice and guidance and put you in touch with some local organisations that may be able to help.
    Sarah B
  • swallow1277
    swallow1277 Community member Posts: 10 Listener
    Hi @sarahbadr thanks for this, no I hadn't thought to look on the Mind website. I've already just quickly checked out one of the links on there and it looks very relevant (the Ambitious About Autism website in case anyone else is interested - looks like it could be very helpful in connecting with other autistic young people online). Thanks so much for the helpful advice🙂
  • omalleysdog
    omalleysdog Community member Posts: 8 Connected
    Hi @swallow1277... you are most certainly not alone 👍
    My son is 20 now... a very young 20 I may add .
    He is a lot happier now and taking more care of his health and appearance... which is a great improvement 👍.
    He is still spending most of his time at home, but will come out with us as a family on dog walks and visits to restaurants. 
    His younger twin brothers have just started university and I think he is getting bored... which in turn I hope will motivate him to do more .
    A client of mine was in a similar situation with her daughter and between them they decided to contact their GP and started on a low dose of anti anxiety medication.... this has been very successful for her and her daughter is now in full time employment, however, this is just her experience and I am not qualified to offer an opinion if this is widely considered a good option. 
    I have talked to my son about this but he is insistent that he is doing what he wants and won't agree ( at the moment) to any form of intervention... a bit of denial! 
    He is getting a puppy soon which will hopefully get him out more.... and give him some responsibility. 
    I am genuinely hopeful.....your son and mine are on different journeys than their peers but with patience and support they will find a way through 


  • Albus_Scope
    Albus_Scope Posts: 3,861 Scope online community team
    And this is why I love this community. We can all share our stories to help each other out and hopefully give a better quality of life to ourselves and our loved ones. <3 

    Something I've noticed with myself and other friends with autism, is we all have our thing, that one thing that gets us really excited, be it music, gaming, painting or needlework.  If you can discover that and be allowed to get involved with it, it makes life so much easier to cope with.  Though it's still a struggle as the world isn't set up for us neuro divergent folk.  But it's getting better every day. 
    Albus (he/him)

    Online Community Coordinator @ Scope

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  • swallow1277
    swallow1277 Community member Posts: 10 Listener
    Hi @omalleysdog , good to hear your update on your son and thanks for sharing his and your situation. We do seem to be on a very similar path here. My son will also venture out for family meals and also to the cinema, although he much prefers to go to weekday daytime showings where there are very few people. The puppy sounds like a brilliant idea, we have a dog. My son won't walk her although I don't actually think that's anything to do with autism - he's also a very typical teenager in that he's really lazy🤣 he does have some kind of responsibility for her as he gives her dinner every night, although even that's a struggle sometimes. I'm sure the intention to do it is there but somehow intention often doesn't translate into action🙄 I'm so glad your son's in a happier place now. Interested that you say he's a young 20 as my son's a very young 18, however he's been doing his own lunches for a while and recently put his very first load of washing in the machine! But it's all quite hard work and he needs full (exceptionally full) instructions to begin with. The anxiety medication is also something to bear in mind. My son has also already said he doesn't want any medication but it's perhaps something he'll consider in the future
  • swallow1277
    swallow1277 Community member Posts: 10 Listener
    @Albus_Scope, yes this community and this thread in particular has been so helpful and has actually given my morale a big boost. To know others are in the same situation unfortunately doesn't make it any easier for our young people but it really helps to feel the struggles they and us are going through are understood. Also to hear that situations can evolve and improve. Thanks so much for replying❤
  • Albus_Scope
    Albus_Scope Posts: 3,861 Scope online community team
    No worries at all @swallow1277, I'm glad we've been able to offer some kind words and advice.  Sometimes just knowing you're not alone in this crazy world can make a huge difference. And thank YOU for sharing, this thread has even helped me with my late diagnosis autistic journey. <3  The part about needing full instructions particularly rings true.  

    What sort of dog do you have?  I'm a huge fan of pets and also slightly nosey. ;) 


    Albus (he/him)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
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  • swallow1277
    swallow1277 Community member Posts: 10 Listener
    Hi @Albus_Scope, nosey is good👍🤣 she's a Cocker Spaniel, they're all totally bonkers but very gentle and loving too, a great comfort when the way us stupid humans carry on is all too much😁 Late diagnosis has been a positive for my son as it has given a reason for the confusion and chaos he was experiencing (and for the most part masking extremely skillfully) throughout his childhood. Obviously though it means that up until the diagnosis there were years of trauma and him not understanding why he felt the way he did (as I said earlier he's said to us he always just thought he was really stupid which is heartbreaking😥). I have no idea how long it takes to recover from that kind of an ordeal, or if you ever completely recover. I feel at the moment he's in the process of coming to terms with his diagnosis and is trying to begin to heal from the years of hurt, anxiety and confusion that eventually led to him breaking down and to diagnosis.  I really hope your late diagnosis has had some positive effects for you also? It's just my personal opinion but I feel early diagnosis is possibly best, but late diagnosis is undoubtedly better than none. My son would currently disagree but he definitely needed it to help make sense of so many aspects of his experience. It's very much been like finding a missing piece of a jigsaw puzzle that then allows the whole picture to make more sense. It certainly doesn't instantly take away the damage done by years of trauma though
  • Albus_Scope
    Albus_Scope Posts: 3,861 Scope online community team

    @swallow1277 oh I am a big fan of a silly spag-nel (as mum would call them) our old dog was a springer/bearded collie mix.  So she was stupidly intelligent, but also amazingly stupid. 

    I can empathise so much with your son thinking he was stupid.  I went through the same for years and it still effects my self confidence to this day.  But finding out WHY has been life changing.  I'm sure in time, he'll be thankful for it all too, but before that usually comes the tears, anger and there's definitely an adjustment period, almost like a mourning period if that makes sense?  Then he'll probably get that 'eurika' moment and that last bit of the jigsaw will slide into place for him. :)

    I highly recommend a youtuber called "The Aspie World"  he breaks things down SO well and has been a huge help to me.  His channel is aimed toward late diagnosis people, especially young adults like your son. So maybe check him out?  He's also just released his first book, which I'll be starting to read tomorrow. :)


    Albus (he/him)

    Online Community Coordinator @ Scope

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  • swallow1277
    swallow1277 Community member Posts: 10 Listener
    @Albus_Scope, I really hope that in time my son builds his self-confidence up. I do really feel for both of you, I think the problem is that once confidence has gone after years of feeling different and confused it's then difficult (not impossible at all but difficult) to get it back, even when you now know exactly why you felt that way. I think it's why he won't go outside at the moment and why looking for a job or doing a college course etc is too much for him. He only got his A-Level results last month so we'll just give him time to adjust and build his confidence and see if it leads him to branch out at all, there's no time limit and no pressure. Thanks for the recommendation, I'll get the book and give it to him (and he'll probably just put it in his room and ignore it!) I'll also check out the YouTube channel and suggest it but he's pretty much saying no to everything right now🙄 I think low confidence is an issue for so many people nowadays, part of the problem with my son staying inside is he doesn't get to meet anyone outside of our immediate family and probably thinks the outside world is full of confident, happy people and he's the only one feeling bad about himself, which is so not the case☹ please do stay in touch on here, I'll let you know if I manage to get him into The Aspie World😉😂
  • omalleysdog
    omalleysdog Community member Posts: 8 Connected
    @swallow1277
    My next step with my son will be navigating the benefits/ Pip that he may be entitled to  !

    No idea if autism and chronic anxiety warrants help 

    I will let you know how we get on  👍
  • Albus_Scope
    Albus_Scope Posts: 3,861 Scope online community team
    @omalleysdog (loving the name there)  autistic people and those with chronic mental health issues are absolutely entitled to help! 

     If you need any advice or even just a bit of cheerleading, let us know and good luck!
    Albus (he/him)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
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    Opinions expressed are solely my own.
    Neurodivergent.
  • swallow1277
    swallow1277 Community member Posts: 10 Listener
    @omalleysdog yes please do update on how you get on as I've been wondering exactly the same thing. My son's only just finished his A-Levels but I wouldn't be at all surprised if the current situation continues into the long term, I've just got that feeling about it🙄 good luck, hopefully navigating the benefits system won't be too painful but from what I heard when my friend changed from receiving Disability Allowance to PIP a few years ago it's now extremely hard to get a penny out of them😬 (that was admittedly a totally different type of disability though so good luck!)
  • Albus_Scope
    Albus_Scope Posts: 3,861 Scope online community team
    It took 18 months of fighting to claim PIP, but it was worth fighting for.  And we're all here to support each other through it. :) 
    Albus (he/him)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
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  • swallow1277
    swallow1277 Community member Posts: 10 Listener
    Sorry to hear you had to fight for what you were entitled to @Albus_Scope, but glad you got there in the end! People shouldn't have to fight, my friend was absolutely entitled but eventually had to move to a different area of the country as her payments were slashed due to having to have a new PIP assessment that was basically an interrogation, all very traumatic for her. I'll shut up now as don't want to put @omalleysdog off before he's even started!🙄
  • Albus_Scope
    Albus_Scope Posts: 3,861 Scope online community team
    Thanks @swallow1277, I have to do it every 3 years and unfortunately that time has come again, so currently waiting for my reassessment.   They seem to think I may suddenly not be autistic and disabled.   :D
     But now I've got my official autism diagnosis, I'm hoping they'll award me PIP for longer.  :) 
    Albus (he/him)

    Online Community Coordinator @ Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.
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  • swallow1277
    swallow1277 Community member Posts: 10 Listener
    Oh yes @Albus_Scope I've heard that autism often spontaneously goes away🤣🤣 my friend said the attitude of her PIP assessment was that she was treated with suspicion from the start, it really affected her badly. That was a few years ago when PIP was first introduced, hopefully things have got a bit more humane since then! 

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