Tag Archives: disabilities

Autism Spectrum Disorder

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I haven’t posted in a while cause to be honest i’m scared, confused and very lost. I’m still coming to terms with being diagnosed with Autism Spectrum Disorder (ASD) and what it means and what effects it’ll have on my life.

I’ve always felt that i’m a different and that something has been ‘wrong’ with me since childhood. But when ever I’ve approached the subject or spoken my mind I’ve been told that i’m being silly or just making things up. I’ve always been the weird one and the outcast, and I’ve tried to cope by pretending and trying to fit in and to ignore how I’ve felt and thought. However now that I’ve been diagnosed with ASD, i’m trying to accept how i feel and what i think is ok and to try and express that. But it makes me wonder who I am, as i have been pretending for a long time.

Most people who are diagnosed with as ASD are diagnosed when they are children. I’m 34 and have found that there is not a lot of help or support for autistic adults out there. majority of self help guides and support groups are for children and their parents. I Just dont know where to turn. There is a lot of other medical conditions which are linked with ASD and I have numerous symptoms and alarm bells are ringing, but when trying to express this to medical professionals they dont seem to care or understand. From everything i’m reading and learning it seems i’ll soon have a medical degree myself. lol

All of this is making my Anxiety and Depression worse.

Autism Diagnosis

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Since my nervous breakdown in 2013, I have been visiting the GP, going to counselling and even had a number of unexpected trips to Hospital. They seem to be finding more and more things wrong with me. First it was anxiety, depression and PTSD. Then they discovered I was partially deaf and classed as hard of hearing, requiring me to have 2 hearing aids fitted. During my numerous counselling sessions it was suggested more than once that I might autistic.

Last week I was officially diagnosed as having ASD (Autism Spectrum Disorder). I’m still trying to come to terms with it and what it all means. I am still awaiting the full report from the autism assessor and hopefully this will either answer some of my questions or put me in touch with people who can help answer them.

– Majority of Autistic people suffer from Anxiety and depression. So is how I’ve felt since 2013 part of my Autism Spectrum Disorder or are they in addition to it?

– Most autistic people are diagnosed when they are children, I’m in my mid thirties, apparently dyslexia is a common misdiagnosis of autism. I was diagnosed as dyslexic in 1998, so am I still dyslexic or has this been misdiagnosed?

– I have been reading and chatting to people who have been diagnosed with ASD later in life and they have said that their life changed and really began after their diagnosis. So will mine change and if so how?

– Are my physical disabilities part of ASD?

It is a big change and huge learning curve. For someone like me who isn’t always sure of his feelings to start with it’ll take time to adjust and time for it all to sink in. I’m relieved that they found something and it wasn’t me just going mad, but. at the same time I’m sad, scared and angry. Really is a jumble of all emotions. Apparently grief is an expected emotion after this diagnosis, but I’m not quite sure why, no one has died, I’m still the same person I was.

 

listed below are some things that are very familiar to me when I was looking through the autism website. I just thought everyone felt this way, didn’t realise it wasn’t normal.

Sight:
OVER-SENSITIVE
Has difficulty getting to sleep as sensitive to the light.

Sound:
UNDER-SENSITIVE
May only hear sounds in one ear, the other ear having only partial hearing or none at all.

OVER-SENSITIVE
Noise can be magnified and sounds become distorted and muddled.
Inability to cut out sounds – notably background noise, leading to difficulties concentrating.

Taste:
OVER-SENSITIVE
Certain textures cause discomfort

Touch:
UNDER-SENSITIVE
Has a high pain threshold.
Enjoys heavy objects (eg weighted blankets) on top of them.

OVER-SENSITIVE
Touch can be painful and uncomfortable – people may not like to be touched and this can affect their relationships with others.
Dislikes having anything on hands or feet.
Difficulties brushing and washing hair because head is sensitive.
May find many food textures uncomfortable.
Only tolerates certain types of clothing or textures.

Balance:
UNDER-SENSITIVE
A need to rock, swing or spin to get some sensory input.

OVER-SENSITIVE
Difficulties with activities like sport, where we need to control our movements.
Difficulties stopping quickly or during an activity.
Difficulties with activities where the head is not upright or feet are off the grou‏nd.

Asperger’s Syndrome

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During a counselling session last week the Counsellor has admitted  that he is only able to help so far and has identified a number of things. We have been looking at things in depth and using mood diary’s to help. But a lot of the underlying issues we found are ingrained in my mind and cannot be changed, which is causing issues. He thinks I will probably be Diagnosed with Asperger’s Syndrome and he thinks getting the diagnosis will help, in my understanding and will open up other treatments more geared to help me.

I will still be seeing my Counsellor a couple of more times to help with anxiety symptoms and coping mechanisms but wont be a complete fix. Have chased up the Autism assessment and waiting to find out how long the waiting list is.

 

What are the Symptoms of Asperger’s Syndrome?

Symptoms include

  • Difficulty maintaining eye contact
  • Difficulty managing social situations
  • Unable to respond appropriately in verbal interactions
  • Unable to decipher facial expressions or body language
  • Unable to show emotions, may seem emotionally robotic
  • May focus solely on their own needs
  • Focus in on specific subjects they are interested in. Usually the topic is very literal.
  • Resistant to change. May expect the same thing to occur day after day.

Conflicting Beliefs

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I’ve been continuing with my counselling and its been going quite well and we have been zeroing in on certain ideals/beliefs that i have grown up with and has been quite surprising in some of the “answers.”

I have always believed in the best of people, even if others have warned me about them or If I’ve heard something about their past, I can only see the good. Maybe they have changed, maybe it was just that once, or that it was the circumstances at the time. This has been my downfall numerous times.

I also expect to be treated badly by everyone, maybe this belief has just come from my past experiences, (abusive relationship, Bullying throughout school, disability discrimination, Homophobia), If i expect to be treated badly, then i can be prepared for it, if it doesn’t happen then that’s great. but this conflicts with seeing the good in everyone.

During counselling we established that I find that I unless I can do something to the same level as everyone else I feel that it is a failure. I do have disabilities both physical and mentally and I don’t believe personally that should affect how I preform. Everyone else can do, so would shouldn’t I? Yes it takes me a lot of extra work and is a lot harder for me to do things, but i don’t personally make allowances for it. If i do, then i find that i constantly have to prove myself, prove that i have difficulty, prove I have disabilities, prove that I have to work twice as hard and prove that I can do it. What some people find easy can be a very difficult and daunting challenge for me. Due to this I rarely find anything to be proud of or find something successful. Even if i did find something to be proud of, i don’t really show it as I think people will make fun or not see it as a particular accomplishment. So Physically and mentally, I know i’m not the same as everyone, but I Still hold myself to the same standards as everyone else.

So I can confirm my Mind is quite screwed up. It really is fighting itself in everything I do, as its trying to work out which belief is the right one. No wonder i suffer from Stress, Anxiety and Depression.

Where to start?

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Argh! Don’t know where to start or what to do for the best. I have so many different issues both physically and mentally that need addressing. I have noticed however all these issues overlap and interact with one another. The way the mental health team and the GP work is to focus on one issue at a time. Which in theory would be a good idea, but by doing this its causing different issues to get worse or has unintended consequences.

I have just finished an ‘Anxiety group Workshop’ course of treatment. To be honest I think it made things worse than it did in actually helping. It was good to find out and hear from others that they were experiencing the same anxiety symptoms as I was (although for different reasons) so I learnt that I wasn’t alone and that I shouldn’t be so scared of the symptoms of anxiety. But it did show how bad and deep my depression was, we had an exercise where we had to challenge ‘negative thoughts’ and turn them into positive ones. For example I’m nervous of going out of my flat. “Something bad will happen if I do” so we had to change it into a positive thought “something good will happen if I go out” but I found that although I could make up something and change it into a positive I didn’t actually believe it and just made me more depressed.

Things that need to be sorted:

Depression – Have had depression for around 15 years, It comes and goes but is always there. I was in an abusive relation for 6 years, in a job that i was constantly bullied in for 10 years. A lot of people have taken advantage of me and my good nature, which makes trusting new people difficult. Have struggled with coming to terms with my sexuality, and struggled with my disabilities – Dyslexia, Hearing loss, musculoskeletal issues, mental health issues. and often depressed about money. Feeling low increases my anxieties. I have been suicidal and don’t want to fall back into that.

PTSD – Still getting flashbacks and nightmares of the events in 2013. This increases my anxiety and depression.

Anxiety – Because i’m anxious all the time and have physical symptoms (sweating) and panic attacks means I often don’t go out, makes me feel guilty and stops me from doing the things i used to enjoy and this makes me depressed.

Health – Due to musculoskeletal issues I’m constantly in pain, which makes my mood low, I tend not to go and get anxious that if i do go out i’ll be in pain or make it worse and i’m not in the right mental state to face surgery on it. I’m on 13 tablets a day, which i know is a lot and proves to me everyday that i’m unwell and increases my depression and my anxieties. I’m very conscious of my hearing aids and how people might react to it.

It’s only a brief description of the things i need sorting, because theirs lots more involved and i’m not comfortable sharing or bringing up everything at the moment, hopefully will give people an insight into how everything is interlocked and overlapping. So when your focusing on one single issue the other issues get worse, and its like taking one step forward and 2 steps back. GP wants to know how i want to move forward with my treatment and what i want to focus on, but i really don’t know as everything is connected. Nothing is worse than anything else, they are all as bad as each other. Ideally would need to work on all of them at the same time to slowly reduce the effects but the Health system doesn’t appear to be set up to accommodate that.

Running on Empty

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Feeling both physically and mentally drained. Its been a while since my last post, but this past month has been exhausting. I feel I’m just going through the motions.

I have completed my one on one counseling sessions with Bury Healthy Minds and am now on a waiting list for group anxiety therapy. Their will be 8 to 10 people in the group. Hopefully I will be able to cope with it and come out stronger than when I went in. During my one on one sessions with my counsellor she recommended that I had a blood test done by my GP and that I get referred for an Austism test ( GP agreed and just awaiting appointment). The results from the blood test came back and showed high levels of enzymes in the liver, so GP has referred me for an Ultrasound at the hospital.

Having an anxiety condition and suffering from depression I have difficulty waiting on things. Waiting on referrals or test results, gives time for my mind to race through the what ifs? Hopefully one day people won’t have to wait.

My counsellor, family and friends have all wanted me to reapply for PIP (Personal Independence Payment). I had been holding off on this as its so complicated and delves deep into thoughts and physical issues. I had already received and completed a medical questionnaire back in December for the DWP (department of works and pensions) and said I might be called for a health assessment. So wanted to get this out the way first. After 3 months I hadn’t heard anything so applied for the PIP.

My worst nightmare came true when I received both the PIP form and a letter asking for me to attend the health assessment, arrived on the same day. I’m so scared, its my illnesses and me being judged and vetted. I understand the need for them, but wish their where less intrusive ways, and better questions than “So why haven’t you killed yourself yet?” Being asked. I know in my mind its a standard question and why they ask it, but makes me feel insignificant, unwanted and makes me feel a burden and wasting peoples time.

I didn’t choose to have physical illnesses and didn’t choose to have mental illnesses but they way I have been treated wether intentionally or not, makes it feel like its my fault. Which then makes the depression deepen and the anxiety worse. I’m sure I’m not the only one to feel like this but really is a poor way of handling things.

My GP has changed and increased my pain medication, is a lot better than the last one but doesn’t completely rid me of pain. As anyone who’s been in pain for a long time can understand it too leaves you feeling exhausted.

I really did think I was getting better at the start of the year but the past 2 months have shown me that although there might have been some improvement there is a long and hard road to recovery to go. That is indeed if I can recover. I know I won’t ever be the same again, but hopefully I will be able to wake up in the morning with enthusiasm and have a pain free day followed by restful nights sleep eventually.

Anxiety is Building Up

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Anxiety is building up and can feel i’m struggling / fighting off a panic attack. I’ve had a lovely few days with my parents who came to visit and i’m quite proud of myself i pushed myself a lot and survived big crowds and lots of decision making. Even though it was family i am very socially tired. Its kind of hard to explain, but when you’ve been active and been in a high anxious state for a while, you need a number of days to relax and chill out to get your anxiety and stress levels down. Something that i think has definitely improved compared to a couple of years ago, but does leave you feeling both mentally and physically drained.

I’m very worried/scared/anxious about getting the new Hearing aids. Have had a hearing aid for my right ear for just over a year now. And now I will be getting one for the left ear as well. After getting my first hearing aid, i realized how much i had been missing and felt so guilty and angry at myself for not realizing it earlier. I don’t know If having 2 hearing aids will make the alot of difference or not to what i can hear, hopefully will, but nervous about it all the same. Then there’s the interaction with the hearing aids and the TV, Telephone and mobile phone. Will i then need adaptations to use these? (TV Loop System, Special hearing aid compatible phones). Its a lot of unknowns and i know there’s nothing i can do about it until i get the hearing aids fitted, but i’m still panicking over it anyway. There’s a part of me that’s exciting about it, i know how much a difference my first hearing made.

Then as we go into April, benefits are reviewed and changed. Monthly payments for bills (Gas, Elec, Water) Have been changed as well. I wont know whats happening or whats going out and what if anything i’ll be left with after. I hate talking money and fiances and really dislike change. Again I know there’s nothing i can do right here and now, but i’m panicking about it.

I So which there was a simple switch to turn off my emotions, I really do hate feeling this way and still feel so very guilty that I’m mentally unwell. I always expect the worst, that way its a surprise if things are better than imagined, (Will need to talk about this to my counselor and see if we can do anything to work on it, it might come down to confidence issues again).

I Have looked into a number of disability pages and grants and to be honest its all very confusing and don’t really know where to start. Most of them you need an assessment or need to contact the charity/company directly, but when your scared of everything and really don’t like meeting people or talking on the telephone it leaves you a bit lost.

Invisible Disabilities

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I suffer from a number of Invisible Disabilities including Anxiety, Depression, PTSD, being hard of hearing and having musculoskeletal disorders. On a good day people would never know, but there are times when some help is needed.

I’m very conscious of my disabilities and don’t like to let it show it. Probably stems from the stigma around mental health and people with disabilities and also my own feelings of not letting my disabilities affect my life. Everyone else can do it/things so why cant I. I’m sometimes my hardest critic. I don’t like to complain that i’m in pain, or saying I don’t feeling right, because that’s all I’ve ever known, just assumed that’s how everyone is. however through my counselling I’m starting to come to terms with things and starting to see things in a different light.

I Have seen that Transport for London is rolling out a campaign so people with hidden disabilities can wear a badge which says “Please offer me a Seat” BBC news Article I think this is a really good and useful idea. The only down side is that its only for London. I Sometimes struggle to stand for long periods and when travelling on public transport it isn’t always a smooth ride, as you are jostled about (no matter how good the driver), for me this can be very comfortable as my body moves one way or the other, the pressure on my knees and my muscles increases and decreases something I cant prepare for it and can cause more pain. I don’t like to attract attention and wouldn’t have the confidence to ask someone for a seat, even if they are sat in a ‘priority seat’ or a disabled seat. Cause like me they might have invisible disabilities themselves. So a badge would be a good idea. When I have had to rely on crutches to get about people have been more than willing to help me and offer seats, but i don’t always require crutches and being a 34 year old man people wouldn’t think that i’d be disabled.

With more awareness of invisible disabilities and illnesses the Metro News website did a great article of “Why are people with an invisible illnesses so scared to ask for a seat on public transport?” link to article here

So I’ve decided to take a very small step and order myself one of these:

16mm Round, Disabled Lapel Pin Badge

Invisible Disabilities are hidden, and not something to be proud of or to show off. But people wont know how to treat you if they are not aware. So a small disabled badge on my clothes, might not change anything, but some observant people might see it and may offer me a seat or help. Cant hurt to try?

Truthfully, I am ashamed that i’m disabled and that i’m a different to everyone else. But with counselling I’m realizing “Its OK to be Me” and I have to accept that I am disabled and shouldn’t be ashamed of it or ashamed of asking for help. I don’t think it’ll make a huge difference but even any small difference has to be worth it?

It’s OK to be Me

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It's ok to be differnt..

Well I’ve had 2 sessions of counselling so far in my current round of treatment. A number of things have come up that i’m currently working through.

I’ve got to encourage myself and teach myself “Its OK to be Me”

I’m a very sensitive person and take almost everything to heart, during counselling we worked out that rather than being myself. I’ve tried to please everyone and change who i am to fit in with other peoples perceptions of how i should be. This isn’t helpful or healthy. This is a very difficult post to write as it covers some of my most sensitive vulnerabilities, so apologies if i ramble on.

Appearance

This is a big one, I have never been comfortable with my appearance for numerous reasons. My hair when it grows long starts to curl and as a child i was teased a lot about it. Didn’t matter if i tried to gel it or style it, it always ended up curling. Always been told people would love to have curly hair, but for me I hate it. So much so now that its just easier and less stressful to shave it all off and have a skinhead. My clothes and style have also been an issue, what i find comfortable or stylish the majority of people wouldn’t be seen dead in it. This did results in sometimes being called names and some clothes were never worn again because of it. I have three very large scars on my knee after having a full knee reconstruction in 2011. I feel humiliated and ashamed that they are there and tend not to show them off. So Don’t wear shorts and always have my legs covered up. Nothings has happened or be said to me about my scars, but when i have gone out in shorts (very rare) I always feel that people are starring and talking behind my back about it. My Weight and body shape is always a concern for me. My weight tends to fluctuate depending on my health, and again I’m just not comfortable in myself.

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 Asking for Help

I don’t like asking for help, it makes me feel humiliated and ashamed. I Feel its a sign of failure asking for help or accepting help. Having numerous physical, mental and learning difficulties, i often have to ask for help in my life. It upsets me that i see other people who are able to do things without help, wish I didn’t need help, but i know i do.

Health

I’m not clumsy, i’m not accident prone, but if anything can happen it will to me. I broke my leg rolling over in bed. I Was hit by a truck while walking on the pavement. I Just seem to go from one medical disaster to another. It affects my life so much, from social activities to work. It is so embarrassing letting my friends and family know that I’ve been injured or am unwell yet again. It has become a running joke “Only You.” Having both long term physical issues and mental issues, symptoms tend to get crossed and confused. After a nasty fall in which i fractured my skull, i lost my hearing in my right ear. But i didn’t know until 3 years later after a different test for dizzy spells showed it. So i really don’t know what is physical or mental anymore.

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Dyslexia

I Have always had issues with my reading and writing from Primary school to now. It means i’m not as quick as everyone else and do need extra help in almost everything. A lot of people don’t understand Dyslexia and don’t understand that each dyslexic person has unique challenges, there isn’t a fix or and aid that is suitable for everyone. A lot of people see Dyslexia as an excuse and that your just lazy or cant be bothered. But believe me I’m not. I try so hard, I feel sometimes i work much harder than others but get the same results and that extra work is never praised. Unfortunately its a disability that people try to hide and find ways to avoid it.

Tiredness

Since 2013 i have felt extremely exhausted both physically and exhausted. I struggle to get a good nights sleep and also with all the symptoms like Panic attacks, anxiety, burping fits, sweating fits my body is working overtime to keep up. I have dark circles and bags under my eyes, which must make me look awful. I do try and push myself to keep awake and to get certain things done. But this runs me down and leaves me more exhausted. Taking naps during the day doesn’t really help, as still so much to do.

Again apologies if i Rambled, but hopefully, friends and family might understand a bit better, if they know how i feel and think inside. I’ve got to come to terms with all of these and just say “It’s OK to be Me”

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