Autism and Aspergers
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Want to know more about other people's experiences with either autism, or epilepsy.

FeatherMaskFeatherMask Member Posts: 8 Connected
edited June 2017 in Autism and Aspergers
I'm mainly on here because my boyfriend has autism and I'd like to know what I can do to help him. However I also have Juvenille Myoclonic Epilepsy and would like to know more about other people's experiences with either autism, or epilepsy.

Replies

  • NystagmiteNystagmite Member Posts: 609 Pioneering
    I will point out that I am a female. You might be aware that as a female, the way I am, is different to your boyfriend. I have Autism and had nocturnal epilepsy as a child, which we think I outgrew.

    It's a spectrum. But we all have general symptoms, such as issues with interacting with others. I've been told, for example, I take things literally. I don't like loud noise and too much light is painful. Your boyfriend may require routine too.
  • LiamO_DellLiamO_Dell Member Posts: 1,114 Pioneering
    Hi @FeatherMask,

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

    As well as our Autism Spectrum Disorders (ASD) category, you may also find our 'Ask an ASD advisor' group of interest. 

    In terms of supporting your boyfriend, Scope has lots of useful information and resources about autism on our website. Have you checked out the National Autistic Society, too?

    I hope this helps. If you have any other questions, please do get in touch!
    Liam
  • [Deleted User][Deleted User] Posts: 689 Listener
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  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @FeatherMask I have asked on twitter for you, Ill share any tweets that we get back with you.
    Scope
    Senior online community officer
  • NystagmiteNystagmite Member Posts: 609 Pioneering
    A few things I find really useful:
    - as mentioned, I have issues with understanding language, which means you have to talk to me in plain English. 
    - if he's done something wrong (or has to do something the right way) you'll have to explain why. He may not see things the way you do, which means he may not understand why you've told him off for saying that. You may have to explain why he shouldn't have said that. 
  • FeatherMaskFeatherMask Member Posts: 8 Connected
    Thanks everyone, we've been together for a few years and were friends for a long time before that so I know him pretty well, his autism normally doesn't effect him. It's just that he's been thrown into a new environment and is sometimes struggling. (He's in a different country now) If anyone knows what may help him communicate more or help him get comfortable so he doesn't get into a state of panic or shut down as much that would really be great. 

    Thanks for all the advice so far though :)
  • [Deleted User][Deleted User] Posts: 689 Listener
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  • HFALaura52HFALaura52 Member Posts: 6 Listener
    Hi there, I am new to this community! I just joined today! My name is Laura and i am 17 years old, last year i was diagnosed with (High functioning) autism, i have been bullied all throughout primary school , but it got worse in secondary school (which is when i started having panic attacks and hiding in the toilets during lunch and break times because i would find it too overwhelming being around people) i didnt have any delays in speech or language, was really weary about walking, took me a while to let go of the furniture, but i had a really bad lisp and even at the ages of 3 and 4 years old people struggled to understand me which led to frusration and 50% of the time having tantrums 50% having meltdowns... but the advice i offer anyone who wants to support me is this- 

    1)Don't assume we don't feel empathy (we do, just because we can't put ourselves in other peoples shoes, or it doesnt seem like we have empathathy, we do, in my opinion we are more sensitive and we feel things more, we just don't express it like others imagine!) 

    2) NEVER call us childish/immature because we aren't, we just don't fit the nuerotypycals view of "maturity" 

    3)Us autistic people, we have routines, and even a simple change in that routine can send us into a meltdown/panic state, it could be something which to everyone else is "minor" like a train being late/cancelled, but please never try to minimize how much is affects us.

    4)this comes under the last post but its seperate, if possible warn your boyfriend about a possible change in routine/any plans outside of his routine 2 weeks before the event and help him process it, however he likes, even if that means sitting down with him going over the plan 100 times a day, thats his coping method

    5)Meltdowns.... meltdowns in public can be strange to witness, its unnerving for the public, but if he has a meltdown in public, and you catch someone staring or giving what i call a #judgeyface, in a polite but firm manner tell them something like "please could you not stare- he is autistic and having a meltdown, staring at him/judging him doesnt help- if you could please move away that would be great" . The same goes for panic attacks, if he gets distressed in public take him somewhere quiet, try to get him to do breathing techniques, what helps me is having fidget/sensory toys, so if i get panicky/distressed i can use them to distract me

    6)Don't treat him like he is stupid or talk to him in a condensending voice, but don't completely dismiss it and act like there is nothing wrong with him, just every 1 1/2 to 2 hours (or however often he wants) check in with him just a simple "are you ok?" will be subtle enough but let him know you are there

    7)Remember... EVERY autistic person is different, even if they have the EXACT same diagnosis, are the same age, same gender and have been through practically the same situations, they will expierence things differently, like some autistic people will have mental health problems caused by their autism, some will have all their senses extremely hightened, whereas some will have only 1 or 2 or maybe no senses hightend, some may have additional disabilities, some may have learning dificulties, some may be over confident, some may not even look autistic, they may just appear quirky/different when talking to them, but NO two autistic people are the same!

    8)Finally, and most importantly, never judge him, or laugh at him, even if its just saying to someone else something funny he did the other day, don't, because many of us autistic people have been laughed at/bullied, it hurts us, as i say to people who insult me/bully/laugh at me because of my autism "just because i have a disability, it doesnt mean i dont have feelings" and that sums it up, we dont like being laughed at any more than anyone else does, it hurts just the same, we may not have the theory of mind, we may proscess things differently, we may not be able to describe our emotions or anyone elses, we may overstep the line without knowing it, we may not be able to do a lot of things..... but at the end of the day we are still humans, we have the same rights as everyone else, we deserve to be respected! 

    i hope i helped.... sorry for the long paragraph or if i came across as rude, if you need to know anything else feel free to message me or get in touch :smiley: also, one more thing, as well as all this, ask your boyfriend how he would like to be supported/treated! but i hope i helped 

    Laura xx
  • LiamO_DellLiamO_Dell Member Posts: 1,114 Pioneering
    Hi @HFALaura52,

    Welcome to the community, and thanks for sharing your advice and experiences! I'm sure @FeatherMask will find them useful. :)
    Liam
  • HFALaura52HFALaura52 Member Posts: 6 Listener
    edited August 2017
    Hey @LiamO_Dell

    thank you I really appreciate it! I hope so! 
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