A Conversation for Talking About the Guide - the h2g2 Community

Living with an Invisible Disability

Post 1

dolfrog

I have been recently diagnosed as suffering from Auditory Processing Disorder, APD. Which some have inadvertantly called auditory dyslexia.
Although i am now midly dyslexic, dyslexia is only one of the many symptoms of APD.
There are no visual signs that I have a disability, no wheelchair, stick or hearing aide, so only those who really know me have any idea of the problems which i face on a daily basis,at home, at work and just out and about. But i do have problems processing what people say especially if they speak quickly, have an unfamiliar accent, or do not look at me while they are talking. I have more problems with noisy areas such as cafeteria and shopping malls. The telephone is a must to be avoided, no visual clues for my visual coping strategies to work on, and the service providors do not relay the full consenant frequency range. So until i gained access to the internet i led a fairly isolated existance with the feeling of great underachievement as i have not been able to pursue a career which could fufil my potentual due to my communication problems.

And the annoying thing is that the accomodation needed to allow me to become more productive are not so great. But Understanding the nature of my disability and others like mine is the major problem, becasue some one has to make an effort to understand we for the most part are ignored. But many opportunites are missed because of this ignorance.


Living with an Invisible Disability

Post 2

DA ; Simply Vicky: Don't get pithy with me!

Hello, dolfrog. I am very interested in what you have to say. I had never heard of your condition, and in future I will be aware that people I meet might have something along these lines, if there is a communication difficulty.


Living with an Invisible Disability

Post 3

Stealth "Jack" Azathoth

Are you interested in writing a Guide Entry on the subject of APD? I started one on BPD but never finished it off.

smiley - peacedove


Living with an Invisible Disability

Post 4

dolfrog

I would write a guide to APD if 9i had the time, most of my free time is taken up running a voluntary organisation, seeking Registered Charity Status, APDUK which has a web site at www.apduk.org .
if we gain a few more members who are willing to help the Executive Committee, then i may have more time to write a guide.

dolfrog


Living with an Invisible Disability

Post 5

NPY

I can't believe how brave you've been in telling everyone!

other people might have just hidden it away and been too embarrassed to tell anyone.

I'll admit I hadn't heard of it either, but I'll go and check out your charity's website. Hope you get your commmittee.


Living with an Invisible Disability

Post 6

psychocandy-moderation team leader

Thank you for posting this, dolfrog. I'd never heard of this problem before, and I will do some research of my own really soon (i.e., tomorrow evening after work).

I want to understand and relate to this problem, because I have a hearing problem of my own. I had an auditory nerve severed some years ago, and hearing people speak properly with background racket has been, and is becoming increasingly so, more difficult. Can you read lips at all? I've been doing it for years. Phone conversations are hard, but just yet it's only with those who insist on mumbling and muttering, or holding the phone away from their mouths. Reading lips has helped me a lot, though.

I can relate to living with a physical problem which is not visible. I can sympathise. It's hard dealing with something people can't see.

I admire you for having the courage to speak up about your problem (I hate using that word, but "illness" is so patronizing, most definitions are) and look forward to talking with you here in the future. Please drop by my Uspace any time you'd like to chat about anything, I work a lot of hours during the week (in a call center, how's that for a job for someone with a hearing impediment?), but am always around eventually, and lots on weekends. I like talking with people, if only in this medium!

You amd your committee (I know you'll get it!), and all of those you can help, will be in my thoughts and prayers.

Thank you for this brave message. smiley - peacedove


Living with an Invisible Disability

Post 7

dolfrog

Dear all on this thread

I have just recently been informed that the Medical Research Council's Institute of Hearing Research has just won 12 million pounds of government funding for its first 5 year APD research program, which will be based at Nottingham University.
One of the conditions of the funding is to have some grassroots input to the project, which will come from APDUK and others.
This means that APDUK has now achieved our one of our original aims, with the help of many others, to lobby for some UK based APD research.

best wishes

dolfrog


Living with an Invisible Disability

Post 8

NPY

Congratulations!!

will you let us know how things go? It would be interesting to see what the research finds.

I hope this is the first of many of your aims you achieve.


Living with an Invisible Disability

Post 9

dolfrog

The Medical Research Council's Institute of Hearing Research has published its first APD pamphlet.
The full glossy version, with pictures is available from the MRC Institute of Hearing Research c/o Nottingham University
or Defeating Deafness, Information Service, 330-332 Gray's Inn Road, London WC1X 8EE. 020 7833 1733. [email protected].

Alternatively you can view the Web version, no pictures, online at the APDUK web site or download the original draft as a pdf file http://www.apd.apduk.org/mrcihrapd.htm

best wishes

dolfrog


Living with an Invisible Disability

Post 10

NPY

that's great! hope it really helps. increasing awareness has to be a big starting point, right? please keep me updated - i'm realy interested to hear how things go.

i've been working in a shop for the past year and a bit, and while i'm about to leave, i have been thinking about what you've said. i am consious at times that i might not look up when i speak to the customers and that i do talk quite fast sometimes. it didn't really occur to me before that small things like that can really affect how people can understand you.

so i'd like to encourage you and say keep going. if you give up, things may never change.


Living with an Invisible Disability

Post 11

dolfrog

Hi All interested in this thread
I thought you might be interested in reading APDUKs second Newsletter.
http://apd.apduk.org/newsletter.htm
Includes some very interesting articles to many areas related to Auditory Processing Disorder and the related invisible disabilities.

best wishes

dolfrog


Living with an Invisible Disability

Post 12

DA ; Simply Vicky: Don't get pithy with me!

Hi, Dolfrog - I am going to read it now! Excellent news about your funding.


Living with an Invisible Disability

Post 13

NPY

that's great that you got all that funding and a pamphlet in the making. keep it up.


Living with an Invisible Disability

Post 14

badger party tony party green party

APD is not a very nice thing for those who live with people who have it.

It makes my friends and family very angry sometimes.

Most often it manifests that I can hear people speaking but it takes time to reister the words and so I ask people to repeat but half way through their response I work out what they said the first time and answer them before they have finished. This most people find odd or just a little annoying.

Whats worst is that often I cant pick out people speaking to me from just ordinary background moise. So it can happen that if I dont know somone is talking to me I just dont hear the words they say even though I can hear them. A lot of the time they think Im just being pig ignorant.

I think if we as youngsters learnt no one is normal and we all have our differences we would all be ready to accomodate each others minor differences in ability. For years I thought I was ignorant and stupid myself.smiley - erm

one love smiley - rainbow


Living with an Invisible Disability

Post 15

NPY

yeah, why is it that, despite everyone being so different from each other in so many ways, we all have to be "the same" and "normal"? what is "normal" anyway?


Living with an Invisible Disability

Post 16

dolfrog

you are not alone I also suffer from APD, Auditory Processing Disorder.
If you look at our Newsletters both have a contributiuon from our Australian psychologist who has been researching how APD Affects Adults. There is also the adult APD forum at http://health.groups.yahoo.com/group/OldAPDs/ the members of which provided much of the information for this research.

hope this helps

dolfrog
chairman APDUK


Living with an Invisible Disability

Post 17

NPY

well hopefully the research will prove useful and will come up with something that will help everyone with APD.


Living with an Invisible Disability

Post 18

dolfrog

There are 2 strands of research we are involved with.
The medical Researech Council university based rersearch project which has all the funding, and provided the initial official recognistion of APD in the UK.
And we are alos involved in a project with Australian psychologist Damien Howard, "How APD affects Adults". This is an online research program which started over a year ago now and takes the form of monthly online chats. There are contributions frfo APDs in Austalia, the USA, Canada, UK and other locations. Damien asks the questions and we provide the answerws from our own experience of APD.
Many of Damiens client base live in the bush so sometimes my co host has a list of questions from Damien when he goes bush.

The first two article which result from this later project have been published in the APDUK Newsletters 1 and 2, both of which can be downloaded from
http://apd.apduk.org/newsletter.htm
They are both in the form of pdf acrobat files, and there is alink to download acrobat if you do not already have a version, so youcan read the files.

best wishes

dolfrog


Living with an Invisible Disability

Post 19

dolfrog

Hi

Just an update on my journey living with an invisible disability.

Late last summer I parted company with my employer of the previous 8 years. The company closed the local branch, and I was glad to get away from the disability discrimination(refusal to recognise the nature of my disability even with a clinical diagnosis). This discrimination at the end was so stressful that I was on Prozac for 3 months.

I am now seeking new employment with the support of the local disability advisors and the adult careers support service. The main problem for both them and myself is that hardly anyone knows much about Auditory Processing Disorder, and understands how it affects adult suffers. Employers included. So i seem to be a guinea pig for the benefit of future generations of APD sufferers and dyslexics.

The current thinking on my position goes something like this.
I have been working in the wrong industries all of my working life and due to my APD I have fasiled miserable to reach my true potential. As no one has gone down this specific road before, I should try to make as many contacts in the education and Special Educational Needs as part of my role as chairman of the voluntary organisation APDUK, and see if any job opportunities arise. My new career path seems to be in information research and distribution, and the librarian job tag has been mentioned.

One of APDUK's targets set by the Charity Commission before we can acquire registered charity status is to provide support for adults suffering APD in the UK. The main area from our point of view is to have our disability and other invisible disabilities recognised in the work place, with siutable accomodations provided by the employers. This is a new area for APDUK, so if you know of how we can make progress in this area coulds you please contact me either via the forum or at [email protected]

best wishes


dolfrog


Living with an Invisible Disability

Post 20

NPY

If I hear anything that will help achieve Registered Charity status I will definately let you know.

On a personal note - don't get discouraged for a moment. I'll admit I don't know exactly what it's been like for you, but we all get times of stress and dicouragement. But all you are doing will soon lead to recognition by employers, doctors, goverment and the wider world.

Please don't give up. And I really hope you find a new job soon - an even better one that won't leave you stressed.

NPY


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