Why are noises so hard for me

[Stevo70]

Hi I got diagnosed just over a year ago with autism. I've had mental health issues for years and I can separate the two. But noises are really affecting me. any noise crowds are a no go and I don't know if this sounds horrible but I hate people. I put earphones on to block out noise it's really hard to explain.

[Tronsformer]

Same! If I don’t have headphones when i’m travelling or the battery on my phone dies my whole journey and mood is ruined. Though I was ‘aware’ of my autism properly until around 2years and only got diagnosed last month, I actually only realised that I was having a sensory overload until the start of this year. But looking back I can see how it was always there. And ironically its where there are the most people. Stadiums, concerts, transport, shopping centres etc.

Either I try and shut everything out and focus on what I’m looking at or leave asap or early. I hate that I can’t handle but it the peace I feel when it is over is amazing. Also, I’ve noticed I’m becoming less patient as I get older so not sure if thats adding to it.

I’m thinking of trying to find out a way to see if its certain frequencies that make it worse and if there are earphones or headphones that can block those out instead. Until then its avoidance for me ir headphones. But curious to know how helpful headphones are for you as I noticed that with headphones I get more anxious in public setting with them on.

[Bee-bop in reply to Tronsformer]

Hi there for me I know certain frequencies are worse and can even affect my balance. Do you get tinnitus too? One of my daughters is checking out online some noise cancelling headphones. They are ones without a musical input. We had some expensive musical ones prior but, couldn't get a pair the same shape unfortunately so gave up but, are looking again now.

[Stevo70 in reply to Tronsformer]

I don't wear headphones in public. Reason being I don't go out only hospital appointments. But I don't think I would wear them outside as I would instantly think people are looking at me . The headphones work ok at home I do tend to miss a lot of sports which I love because around 6 at night I try lie on sofa earphones in and drift away. Since I got diagnosed I am more talkative to strangers. Only on the phone though I just can't do groups. It's impossible. As my day goes I tend to gradually get more anxious to the point I just have to put earphones on. I have big ones that go over my head. Really good at blocking noises. I do accept it's part of me now and although I still feel did they diagnose me right ?? Deep down I know I'm autistic. I also think because I've been through life fighting all these things without knowing I was autistic it's damaged my head permanently. I do look back and feel robbed but it's done so is what it is. I'm not sure about frequency I find any noise is hard . Noises are awful but there's so much more things I have too. I know people can't just stay inside like I do and I don't know what to say really. The relief when I get home though is so hard to explain. I'm kinda realising it's not just me. Thanks for your reply

[Bee-bop]

Hi there,Sensory overload is a thing a lot of people with a diagnosis for autism have and my daughter has sound as a major issue. Loud crowds really affect her and this last year at college was awful for her due to a loud classroom. But, I also struggle with this due to a car accident in 2012 I have chronic fatigue syndrome/ME and can feel like I will faint or be sick with crowds and noise, when I do too much so, can empathise. I think of it as hyper sensitivity in the senses and you might have noticed signs in large shopping centres offering autism hour, a special time designed for people with asd where the music in shops (something I find really hard) is turned off and less people attend.

Ways to manage people that work for us is to go early and/or plan in advance. It helps us to navigate a world that is over stimulating. Also, knowing that when we get home they'll be some time out/down time helps too.

We're looking at noise cancelling headphones at present.

[Stevo70 in reply to Bee-bop]

Hiya thanks for the reply. I do have tinnitus not very bad but it's there. I don't go out the house only appointments so I avoid people and noises. At home if I hear next door going upstairs it gets to me. I really can't explain why but I kinda accept it. I usually put earphones on around 2 in afternoon and that's it until bed. I listen to instrumental and it does really help. I only got diagnosed last year but I was diagnosed with a few mental health issues earlier. I have days where I'm so anxious it's ridiculous. My problems are so strange to me. Getting diagnosed I now realise I'm not a freak and I accept it now. It's really strange as at night in bed I can't put up with the silence yet during morning I want silence. . I know my life isn't great but to me it's what I know. If I hear anything I jump up and I'm at the window looking. And I honestly can't explain why . It's really hard but I'm coping best I xan

[Bee-bop in reply to Stevo70]

Are you getting any support for any of this?

[Stevo70 in reply to Bee-bop]

Headphones aren't ideal but work. Not 100 percent though. I do keep myself from being in crowds that's noise but also feeling of panic being around people. I also have extreme fatigue due to a medical condition so I'm tired mentally and physically. I think for someone to understand what it's like they have to be in same boat .

[Bee-bop in reply to Stevo70]

Yep, it can be hard to find people who can understand or are in the same boat. My daughter also panics when in crowds/around people as well as the noise. After interaction she has fatigue and had a 10 day migraine one time.

My cfs/me means I am often physically and mentally exhausted. None of it is pleasant.

[Stevo70 in reply to Bee-bop]

The support I get isn't great. Autism services are non existent. I have access to a mental health nurse who is great but she's really only someone to talk too she doesn't really offer help as suchI've had so many mental health services that simply don't help I understand now that as I have autism the therapy I had was wrong for me.

I've gone through life fighting my thoughts not knowing it was autism which is kinda hard to accept. I do also have anxiety and I think dillusion or something like that.

Always knew I was different way I thought etc.

The noise thing I have no help at all.

Example is I got hospital appointment Tuesday. I have to get taxi and I dread it .

I've cancelled so many appointments over the years as it really is too much at times but how do u explain this to someone who doesn't fully understand?

I'm realising I'm not only one like this which helps but sometimes I do get made to feel a fraud and that I'm being awkward.

[Bee-bop in reply to Stevo70]

It seems like you're expected to just get through everything on your own,probably because you have been able to mask for a long time? The thing is masking seems to increase anxiety so it makes it harder. Doesn't anyone go with you to appointments? What about family, anyone you trust to support you? I wonder if there's a way to get some extra help like a social worker or advocate for you. Here we have a social prescriber attached to the Dr's and they can arrange things. We also have a volunteer led disability services. They do accompany people to appointments sometimes and I know that you can get hospital transport in some areas too.

[Stevo70 in reply to Bee-bop]

There is a man who works at hospital who I got phone number who will accompany me. I tried for months to get social worker but just dead ends. I had friends but gradually I pushed them away. I have a social presciber who was nice but she's not in contact anymore. Befriending isn't for me .sounds horrible but I just don't like people. My appointment on Tuesday is 9 which is great and the clinic is a very quiet one . So I'll be ok. Still rather not go but .... We don't have any volunteer thing here but I'm wary of strangers anyway. I'm a very complex person haha

[Bee-bop in reply to Stevo70]

That sounds good with the man in the hospital who will go with you at least. I can understand regarding strangers etc. I think my daughters have been ok with me helping them and this can be difficult for people to do on their own sometimes. I won't say it is easy for either of them to do things on their own but, sometimes after me going once or twice then they are ok after that with a new person. Maybe you could re contact the social prescriber?

Yes, early appointments with less people are definitely better !

[Stevo70 in reply to Bee-bop]

I've asked doctor to see if social presciber can ring but heard newt. I have mental health nurse leaving tomorrow so I'm panicking about it even though I'm assured ill still have same access to new nurse. I find people really don't understand how hard it is go somewhere I've never been. And the noises. Nobody understands. I sometimes question myself thinking am I being stupid. I really hope your daughter is getting every possible help as I'm basically left.

Clinic Tuesday isn't too bad. But eye clinic is so busy it's ridiculous that is when I ask for help.

[Bee-bop in reply to Stevo70]

I agree, people don't understand how overwhelming it can be to go to new places and/or meet new people. Are you having a transition to the new nurse? Hope he cross over goes well.You're not being stupid, it's just not easy when the default is a one size fits all of a supposedly physically and mentally able human being that can manage everything. It's not feasible for so many of us and then you are the one having to chase for the right to accessible services which is tiring!

Hope things go smoothly on Tuesday.

[Stevo70 in reply to Bee-bop]

I'm seeing new nurse in 2 weeks I think. Hopefully it goes ok.I'm pretty calm about tomorrow as it's an ok clinic. The form of arthritis I have in spine the biggest affect is fatigue which is so draining so mental and physical tired.

I sometimes feel overwhelmed with everything and I have to plan everything or I get frustrated. Appointment is 9 so it's fine. Getting a taxi I don't like but I can't walk it. I try and think soon be over and home. Hopefully as today goes I'll stay calm but it's something I can't predict.

[Bee-bop in reply to Stevo70]

I can 100% get the fatigue with the cfs/me I have and the planning for both my daughters need that or they get overwhelmed which means I can get more fatigued. My daughter with autism gets fatigued too though due to getting overwhelmed so, it's a fine balance.

Doing gentle things you know you enjoy should help with staying calm. We have guinea pigs here for when my daughter gets overwhelmed and they do help calm her.

[Stevo70 in reply to Bee-bop]

I've just been told my appointment tomorrow is 3 o clock. That's really thrown me. I've kinda got a double whammy with fatigue. It makes u feel so lazy but it's just so hard to live with. My nurse just rang for last time. So I'm kinda upset . actually not upset more anxious now. I have to have routine and it's all over the place at minute.

I know u will understand the fatigue and I understand fully how your daughter feels. It's kinda reassuring to know I'm not imagining it

I'm looking at getting a dog but I lost my other 3 years ago and it knocked me for 6 so I dunno. I just wish I could fast forward 2 month

[Bee-bop in reply to Stevo70]

Oh no, that's really frustrating with the change in time and the last time you talk with the nurse. No wonder you are feeling anxious. I hope you can do nice things to help regulate your feelings a bit. My daughter is hoping for an assistance dog yo help her but, It's a long process. Animals are good at helping.

[Stevo70 in reply to Bee-bop]

It's a good job I phoned hospital because I'm certain they told me 9.What is an assistant dog? Not heard of that

[Bee-bop in reply to Stevo70]

That's lucky that you checked for sure. An assistance dog is trained to help people with a variety of disabilities but, you can get them specifically for people with asd. If you Google autism assistance dogs there are places than train dogs.

[Stevo70 in reply to Bee-bop]

Got hospital 2.30. They told me been a mix up so could only see me 3.30. What a long hour that was. But I got everything I wanted from it but was so tired when I got back.

[Bee-bop in reply to Stevo70]

Isn't it frustrating when you get through the ordeal of getting yourself prepared only to have another hurdle put in the way! I am glad that you managed it OK and got what you wanted from it, not surprised you were tired after though!

[Stevo70 in reply to Bee-bop]

Yea was ok in the end. Starting now worrying about appointment on Thursday I got. It's at carers centre but they help me with forms so I got go . I don't feel upto it but hopefully I can get a lift. All the worries don't half make you tired . Hard to explain. Which triggers my noises . vicious circle

[Bee-bop in reply to Stevo70]

It does make you tired. Try to have something nice to look forward to afterwards.