Asperger's Syndrome news.

tony.aspergers

It would appear that the current Government in Ireland have decided that those adults having a diagnosis of Asperger's Syndrome are not to be classed as "disabled" any longer. In other words they believe that adults with Asperger's are perfectly capable of holding down a job and therefore do not require the benefits that come with Disability Allowance.

Now this is all very well, but (a) where are the jobs and (b) where is the support those of us with AS need? Support in the areas of housing, jobs, and general life?

Discuss!

treecreeper

i am an adult aspie and i have begged for support as i had to move recently and it was very traumatic, moved from where i was born to another county.
i know no one in this area, dont even know the geography and i am expected to manage with this and also a neurodegenerative disorder and many many autoimmune diseases.
as for working, i never could work where others were around, lord i did try. i did well working on my own.
its been a bitch of a life, i dearly would love more help, but dont think its there quite frankly. treecreeper

SerialComplaint

tony.aspergers wrote: »

Support in the areas of housing, jobs, and general life?

Hi Tony

Would you like to expand on the particular needs of people with Aspergers Syndrome in relation to housing, jobs and general life? What kind of supports are needed?

tony.aspergers

SerialComplaint wrote: »

Hi Tony

Would you like to expand on the particular needs of people with Aspergers Syndrome in relation to housing, jobs and general life? What kind of supports are needed?

Certainly!

Housing - properly built small group housing schemes for adults with AS, individual houses but with on-site key workers and close to good restaurants (for those of us who don't like cooking every day!). Parking spaces, and paid for either by Council housing schemes or under the Rent Supplement scheme. These houses need to be just like having your own house but preferably in a quiet area away from screaming kids. Sort of like the retirement schemes but for us instead?!

Employment supports - specialised for adults with AS - permanent liaison between employers and us, hopefully jobs could be created according to our needs and interests including self-employment options.

General supports - I suppose this could be included with the housing key workers mentioned above.....

Nua Healthcare do some of the above, but it is not available to all adults with AS, what is needed is a dedicated service open to all such adults without prejudice.

It would be so good if one of the smaller, say 50 unit, NAMA owned ghost estates or apartment blocks could be given over to being made available for occupation by aforementioned adults with AS..........!

SerialComplaint

Thanks for the detail, Tony. Can we discuss these points a bit further;

- Lots of people don't like cooking! But really, that is just something we have to work around or live with. Is this a 'need' relating to the condition, or a 'want'?

- Lots of people want houses, but why should people with Aspergers have additional entitlements relating to their disability?

- I can understand that some people with Aspergers would want quiet places, away from children. I'm wondering if this is one of those 'be careful what you wish for' things. Does it really lead to a healthy community where there are no kids, and no families with kids around? In my personal experience, families with kids are often the ones who care most about taking care of open spaces, and keeping an eye out for strangers etc. Also, some people with Aspergers are parents themselves, so how would this work?

For supported employment, aren't there supports available through local organisations under IASE? What more is required that isn't available today through IASE organisations?

I'm really not arguing with you - I'm just trying to explore this further to understand the issues.

tony.aspergers

In relation to my points about cooking, you are right, but I suppose I would like to be somewhere not too far away from decent "village" type restaurants, not just the fast food places. I do do some cooking, but not every day, as I find my hobbies tend to take me away quite a bit out of the house and there is often not enough time to cook when I return home.

I think you will find that there are a lot of people with Asperger's, particularly single men who are just becoming men i.e. leaving school or college, and wanting to fly the parental nest but who, like myself, cannot cope entirely on their own. In addition the main problem is that a lot of property landlords simply do not either know or want to know when it comes to disability, especially Asperger's. I have yet to meet a landlord who has wanted to work with my disability. This leads to problems all the time.

There is therefore a need for permanent supported accommodation for adults with AS. Those who are lucky enough to be in a relationship, or married, with kids, are probably suitable to live in normal housing developments. But for a lot of adults with AS, they prefer peaceful surroundings, I know I certainly do. I have no objection to living in a town or an area where there are families etc but would prefer that there be no youngsters in the immediate estate, apartment block, housing development.

Most of the supports for adults with AS seem to have all but evaporated. Including the advocacy service that used to be available at one time. All down to lack of State funding.

treecreeper

quiet, yes for you can SPIN in noise and clatter.
cooking - i know of one person who LOATHES cooking and cleaning but for me, i see that as not a fault in this person but something very strange.
suddenly in the middle of washing up, just as the person comes to the end of the whole darn thing, a scene happens, a tiny dance and offa the scene, its very funny to watch, just cannot tolerate it long enough to finish a job pretty much being well done!
screaming children, nope not for me, but worse, barking dogs...AHHH! work, never able. fine about work, always a pretty damn hard worker but it was other people who did my head in with fright. i can cope on one to one and when sure of my stance otherwise, i am offa out of there/here!

SerialComplaint

tony.aspergers wrote: »

In relation to my points about cooking, you are right, but I suppose I would like to be somewhere not too far away from decent "village" type restaurants, not just the fast food places. I do do some cooking, but not every day, as I find my hobbies tend to take me away quite a bit out of the house and there is often not enough time to cook when I return home.

Honestly, I'm not being difficult - but lots and lots of people find themselves not having time to cook these days.

tony.aspergers wrote: »

I think you will find that there are a lot of people with Asperger's, particularly single men who are just becoming men i.e. leaving school or college, and wanting to fly the parental nest but who, like myself, cannot cope entirely on their own.

Again, there are lots of young people struggling to get out from the family home, but facing huge financial barriers at the moment.

tony.aspergers wrote: »

In addition the main problem is that a lot of property landlords simply do not either know or want to know when it comes to disability, especially Asperger's. I have yet to meet a landlord who has wanted to work with my disability. This leads to problems all the time.

It would be great if you could expand on this. What do you need from a landlord?

tony.aspergers wrote: »

But for a lot of adults with AS, they prefer peaceful surroundings, I know I certainly do. I have no objection to living in a town or an area where there are families etc but would prefer that there be no youngsters in the immediate estate, apartment block, housing development.

I guess this would be very difficult to implement. With privately owned accomodation, there is no way of ensuring that a family with young kids won't move in beside you. With council housing, I'm not sure if the council could be expected to restrict families from an entire block - except perhaps in blocks designed for elderly folk.

tony.aspergers wrote: »

Most of the supports for adults with AS seem to have all but evaporated. Including the advocacy service that used to be available at one time. All down to lack of State funding.

Isn't the National Advocacy Service still up and running?

reverselogic

tony.aspergers wrote: »

Now this is all very well, but (a) where are the jobs and (b) where is the support those of us with AS need? Support in the areas of housing, jobs, and general life?

Discuss!

I don't know about your other points. But the jobs are in software apparently I've read about companies actively recruiting people with Autism. You might be interested in the following articles.

http://www.msnbc.msn.com/id/34047713/ns/health-mental_health/#.T8f-No7_ZSU

http://www.smartertechnology.com/c/a/Social-Business/Autism-Traits-Prove-Valuable-for-Software-Testing/

http://www.smartertechnology.com/c/a/Social-Business/Autism-Traits-Prove-Valuable-for-Software-Testing/

tony.aspergers

SerialComplaint wrote: »

It would be great if you could expand on this. What do you need from a landlord?

Isn't the National Advocacy Service still up and running?

My ideal landlord needs to be able to realise that I'm not necessarily going to keep the place spotless at all times, nor am I going to want to keep his supplied moveable furniture in the exact places where he originally placed it, and that I may for example require a heavy blackout curtain in my bedroom to enable me to sleep properly.....

And no the National Advocacy Service appears to have been abandoned, haven't had anything from them this year or last year.... Eric Isherwood seems to be the only person doing much and most of that he is doing voluntarily....

tony.aspergers

reverselogic wrote: »

I don't know about your other points. But the jobs are in software apparently I've read about companies actively recruiting people with Autism. You might be interested in the following articles.

http://www.msnbc.msn.com/id/34047713/ns/health-mental_health/#.T8f-No7_ZSU

http://www.smartertechnology.com/c/a/Social-Business/Autism-Traits-Prove-Valuable-for-Software-Testing/

http://www.smartertechnology.com/c/a/Social-Business/Autism-Traits-Prove-Valuable-for-Software-Testing/

These are very interesting, but it is a pity they do not seem to refer to Ireland.......

treecreeper

hey, is there ANY help for adult aspies?
what is available and how do you source.
i would like some photo media and audio visual education as i want to put something together with all my artwork.
have you seen any such stuff for adults to engage with this sort of thing?
and help for those aspies who are mobility compromised as in sticks and wheelchairs?
advocate doesnt seem to be able to help and brian miller was approached to no avail.:)

Thoie

tony.aspergers wrote: »

My ideal landlord needs to be able to realise that I'm not necessarily going to keep the place spotless at all times, nor am I going to want to keep his supplied moveable furniture in the exact places where he originally placed it, and that I may for example require a heavy blackout curtain in my bedroom to enable me to sleep properly.....

Nothing you've said in terms of living arrangements applies only to people with Aspergers. There are many young people who are leaving home for the first time and haven't learned or had the interest in learning how to keep a home clean. Many people in rented accommodation move furniture around (the main thing is not to damage it, and put it back where it was when you're leaving).

I need blackout curtains to sleep, and always bought my own blackout linings when I was renting, which I put up and took away with me when I left. I can't sleep with weird lights (such as those on some sockets) on, but rather than expecting the landlord to do something about it, I covered the lights with a post-it.

yoyo

I have Aspergers Syndrome and would love to work, my issue (due to AS) however has been making it difficult and frustrating for me to have a chance. I only wear Tracksuit bottoms, T shirts and Runners. I do not wear suits, Jeans etc type clothing. Now people may say sure just throw on a suit, its just for an interview etc. People just don't realise how "minor" issues we with AS have can be such a burdon on us.
I have tried plenty of times to "overcome" this issue, (the best medication being binge drinking :rolleyes: ) but I am 23 now and all my life I have had this and I don't believe it will ever change. This just shows the typical arrogance of the govt, many of us with AS would like to work, and I am actively looking but unfortunately issues beyond me are making that a huge issue, I do get disability payments, live on my own (which I much prefare) however I'm not sure how much longer I can go on this way as I am getting family assistance which I can't rely on for much longer. Really is a frustrating...

Nick

Edit: Btw have an honours degree in Computer Science...

treecreeper

Nick, the drinking must go!
i am an older aspie and believe that once you know your strengths you will cope better.
help is there.
budgeting help can come from MAABS.
jobs, well now there are E-courses to upgrade skills.
and working at home is always possible for aspies. i did it all my life.
social life - try for this when you are young.
try to understand your stengths here too and just little outings and bravery at first.
it can be very lonely later in life to have no one, as i do, bar a gorgeous twin sister. but i believe if i had not succumbed to help in the wrong source, aka psychiatry i would have been better. help for aspies now is there and us older were not even recognised as this, i was as late as 54 to get this diagnosis. it has helped put understanding to all the 'why's i had about self.
discover what is making you binge drink and then attemp another way to solve that, or part of that.
best of luck and sorry for the preach.:)

tony.aspergers

yoyo wrote: »

I have Aspergers Syndrome and would love to work, my issue (due to AS) however has been making it difficult and frustrating for me to have a chance. I only wear Tracksuit bottoms, T shirts and Runners. I do not wear suits, Jeans etc type clothing. Now people may say sure just throw on a suit, its just for an interview etc. People just don't realise how "minor" issues we with AS have can be such a burdon on us.
I have tried plenty of times to "overcome" this issue, (the best medication being binge drinking :rolleyes: ) but I am 23 now and all my life I have had this and I don't believe it will ever change. This just shows the typical arrogance of the govt, many of us with AS would like to work, and I am actively looking but unfortunately issues beyond me are making that a huge issue, I do get disability payments, live on my own (which I much prefare) however I'm not sure how much longer I can go on this way as I am getting family assistance which I can't rely on for much longer. Really is a frustrating...

Nick

Edit: Btw have an honours degree in Computer Science...

What you have said sounds so familiar!

Although personally I'm not a regular tracksuit wearer, more so casual black jeans and shirts, but not suits or ties......!!!

It strikes me that your best bet is self employment at the moment, work quietly and keep your benefit payments until something more lucrative comes up. Hopefully something in the form of suitable advocacy for those of us in Ireland with AS will be forthcoming at some point in the future when the current financial crisis ends, can't see it happening in the meantime much as I would like it to....

I know I'd fit in very well to being employed in a College or University such as Trinity but they aren't recruiting either at the present time!!!!

treecreeper

to go through what others have said about their needs and to consider these as 'normal' and most people would be prefer such and such misses the point entirely.
you have to be an aspie to understand what it can be like and how anxiety provoking the so called 'normality' of ordinary day to day stuff can be.
try telling someone for instance, who is picking out all the onions in a dish cos the texture is strange and its a food that 'feels funny' thats another aspie i know.
so stay away from being so judgmental, its important to the person/s who say what they say here on this forum.

yoyo

treecreeper wrote: »

Nick, the drinking must go!
i am an older aspie and believe that once you know your strengths you will cope better.
help is there.
budgeting help can come from MAABS.
jobs, well now there are E-courses to upgrade skills.
and working at home is always possible for aspies. i did it all my life.
social life - try for this when you are young.
try to understand your stengths here too and just little outings and bravery at first.
it can be very lonely later in life to have no one, as i do, bar a gorgeous twin sister. but i believe if i had not succumbed to help in the wrong source, aka psychiatry i would have been better. help for aspies now is there and us older were not even recognised as this, i was as late as 54 to get this diagnosis. it has helped put understanding to all the 'why's i had about self.
discover what is making you binge drink and then attemp another way to solve that, or part of that.
best of luck and sorry for the preach.:)

Ahh don't worry about it. Was a heavy drinker, i.e was a daily thing for a while but not any more . Still have a few cans most weeks but only once or twice. May have some tonight .

tony.aspergers wrote: »

What you have said sounds so familiar!

Although personally I'm not a regular tracksuit wearer, more so casual black jeans and shirts, but not suits or ties......!!!

It strikes me that your best bet is self employment at the moment, work quietly and keep your benefit payments until something more lucrative comes up. Hopefully something in the form of suitable advocacy for those of us in Ireland with AS will be forthcoming at some point in the future when the current financial crisis ends, can't see it happening in the meantime much as I would like it to....

I know I'd fit in very well to being employed in a College or University such as Trinity but they aren't recruiting either at the present time!!!!

AS affects people all differently though, have a friend with AS who likes "dressing up" for occasions and wearing a suit to him is no issue, just a pitty I like the ole tracksuits! I do plan on going the self employed route at some stage, but I also want to get "workplace" expierience first, as I don't feel comfortable with just diving into the deep end, even though I should be considered well qualified.
I am also aware if I start working, and find it too demanding, the issues about going off disability and then trying to get back on it, particularly if this current shower have the attitude towards AS as in the op. Really is a vicious circle!

Nick

treecreeper

i think you can earn a certain amount when on disability.
never dive anywhere and you right to get the experience.
i had to as well.
that part was difficult for me, and again the supportive element wasnt there and i think most jobs now understand far more about asperger.
allowances is being made to a degree and this is helpful and useful.

tony.aspergers

What would be rather interesting is a major company being formed, lets say somewhere in the Greater Dublin area in one of the many empty business parks, formed by and run by people with AS.......

Even if everyone was employed on a voluntary basis and kept their Disability Allowance. The rules for DA allow for each person who is claiming it to have cash assets of anything up to €50,000 as far as I know, excluding the value of any one owned/occupied property.

The €50,000 could be made up of shares in the company, for example.......!

Only an idea....

yoyo

treecreeper wrote: »

i think you can earn a certain amount when on disability.
never dive anywhere and you right to get the experience.
i had to as well.
that part was difficult for me, and again the supportive element wasnt there and i think most jobs now understand far more about asperger.
allowances is being made to a degree and this is helpful and useful.

Thats true, I think the hours are very limited though, having said that I do plan on contacting social if I do get a job and seeing what options I have.

tony.aspergers wrote: »

What would be rather interesting is a major company being formed, lets say somewhere in the Greater Dublin area in one of the many empty business parks, formed by and run by people with AS.......

Even if everyone was employed on a voluntary basis and kept their Disability Allowance. The rules for DA allow for each person who is claiming it to have cash assets of anything up to €50,000 as far as I know, excluding the value of any one owned/occupied property.

The €50,000 could be made up of shares in the company, for example.......!

Only an idea....

That does sound interesting alrite. There are many companies who are part of the "Ahead" (I think it is) program which aims to have a certain % of company workforce persons with disabilities. I have also tried that route...

Nick

tony.aspergers

To take the idea one step further, how about if this company were to offer free accommodation (for life) in modern purpose built individual houses in return for reduced wages/share profits? It could be seen as being another problem solved for those of us who are having difficulties with accommodation!

treecreeper

tony, you have lost the run of yourself!!!!!
:)

Invader_Zimmy

yoyo wrote: »

I have Aspergers Syndrome and would love to work, my issue (due to AS) however has been making it difficult and frustrating for me to have a chance. I only wear Tracksuit bottoms, T shirts and Runners. I do not wear suits, Jeans etc type clothing. Now people may say sure just throw on a suit, its just for an interview etc. People just don't realise how "minor" issues we with AS have can be such a burdon on us.
I have tried plenty of times to "overcome" this issue, (the best medication being binge drinking :rolleyes: ) but I am 23 now and all my life I have had this and I don't believe it will ever change. This just shows the typical arrogance of the govt, many of us with AS would like to work, and I am actively looking but unfortunately issues beyond me are making that a huge issue, I do get disability payments, live on my own (which I much prefare) however I'm not sure how much longer I can go on this way as I am getting family assistance which I can't rely on for much longer. Really is a frustrating...

Nick

Edit: Btw have an honours degree in Computer Science...

Can't you make apps similar to Angry Birds then?

SerialComplaint

yoyo wrote: »

I have Aspergers Syndrome and would love to work, my issue (due to AS) however has been making it difficult and frustrating for me to have a chance. I only wear Tracksuit bottoms, T shirts and Runners. I do not wear suits, Jeans etc type clothing. Now people may say sure just throw on a suit, its just for an interview etc. People just don't realise how "minor" issues we with AS have can be such a burdon on us.
I have tried plenty of times to "overcome" this issue,

Dress code generally isn't an issue for 'back-office' roles in many IT companies. If your main role is going to be testing or coding, it wont really matter what you're wearing. Having said that, wearing a tracksuit all the time would probably be a bit unusual.

You could try being up-front about your condition and your needs. This might well work with some employers. Or maybe you could try to find a middle ground. The line between tracksuit and combats or some other casual pants isn't huge, so maybe you could find something suitable there.

tony.aspergers wrote: »

What would be rather interesting is a major company being formed, lets say somewhere in the Greater Dublin area in one of the many empty business parks, formed by and run by people with AS.......

Even if everyone was employed on a voluntary basis and kept their Disability Allowance. The rules for DA allow for each person who is claiming it to have cash assets of anything up to €50,000 as far as I know, excluding the value of any one owned/occupied property.

The €50,000 could be made up of shares in the company, for example.......!

Only an idea....

No disrespect, but this sounds like a terrible idea to me - it sounds very segregated. People with AS should be involved in IT companies, on the same basis as everyone else. If they can run their own companies, that's great. Let them run companies with the right business partners, rather than choosing people based on their particular disability.

treecreeper wrote: »

hey, is there ANY help for adult aspies?
what is available and how do you source.
i would like some photo media and audio visual education as i want to put something together with all my artwork.
have you seen any such stuff for adults to engage with this sort of thing?
and help for those aspies who are mobility compromised as in sticks and wheelchairs?
advocate doesnt seem to be able to help and brian miller was approached to no avail.:)

I guess FAS would be the main training provider. They have good experience with people with all kinds of disabilities. Why not look out for what courses are available at your local FAS office, and tell them what particular requirements you may have.

tony.aspergers

but FAS are going.....going.....gone, or will be soon....

SerialComplaint

tony.aspergers wrote: »

but FAS are going.....going.....gone, or will be soon....

It's just changing name. The training service still exists.

tony.aspergers wrote: »

My ideal landlord needs to be able to realise that I'm not necessarily going to keep the place spotless at all times, nor am I going to want to keep his supplied moveable furniture in the exact places where he originally placed it, and that I may for example require a heavy blackout curtain in my bedroom to enable me to sleep properly.....

These requirements don't sound unusual at all. Many tenants will kids will want blackout curtains.

tony.aspergers wrote: »

And no the National Advocacy Service appears to have been abandoned, haven't had anything from them this year or last year.... Eric Isherwood seems to be the only person doing much and most of that he is doing voluntarily....

There is nothing at http://www.citizensinformationboard.ie/services/advocacy_services/ about the service being abandoned. Just to be clear, I'm referring to the individual support service provided. If you're referring to some kind of campaigning role, then this doesn't come under the National Advocacy Service.

treecreeper

well, fas has been hauled over the coals for shocking provision and lack of jobs at the end, so i hope it does more than change name!

yoyo

SerialComplaint wrote: »

Dress code generally isn't an issue for 'back-office' roles in many IT companies. If your main role is going to be testing or coding, it wont really matter what you're wearing. Having said that, wearing a tracksuit all the time would probably be a bit unusual.

You could try being up-front about your condition and your needs. This might well work with some employers. Or maybe you could try to find a middle ground. The line between tracksuit and combats or some other casual pants isn't huge, so maybe you could find something suitable there.

Believe me I've tried the combat pants and other types! Its a very frustrating problem and as you say a "back-office" type post should not matter too much if I come in wearing plain tracksuit bottoms and runners. I have decided to go the up front route, telling companies before the interview the reasons I am not in a suit, as I do think not doing so will make people think this bloke isn't making an effort. Which is totally not true .
People do seem to judge a book by its cover unfortunately, particularly in HR :rolleyes::rolleyes:

Nick

RobbingBandit

I have a diagnosis of AS,ADD,Dyspraxia and Sensory problems. Last year after a family death I was referred to a doctor in August by my GP as I was depressed who said I have no problems what so ever. I did not take this well and was referred to St Vincents in Fairview for a Psych evaluation in December after trying to hurt myself more than once. The doctors there work for the doctor I seen in August so they said the same thing, since then I have been trying to get a second opinion.

My diagnosis was made by Prof Fitzgerald so I don't really want to go back to him, I have got a quote for €550 for a multi disciplinary assessment, but I am on disability allowance so I am trying to save but not doing so well,I am not speaking to any of my family so getting a background check done is difficult. Does anyone know where I can go from here?

treecreeper

hi there,
you are between a rock and a hard place for sure.
try to stay calm, no. 1.
there are very little options open to you in this matter as i had the same difficulty.
remember though, diagnosis will not change a lot.
you still have to face your difficulties.
but diagnosis will and even help you understand better about yourself.
you went to fitzgerald for the asperger assessment and he gave you the diagnosis of asperger?
he is used a lot for such but there are others out there, eg Rita Honan or others at the Autism unit at Trinity College dublin.
the most important thing right now is to stay safe and try not to be absorbed into the psychiatric system.
it can so easily happen and i am afraid that there you may find alot of stigma and prejudice thereafter.
this is my experience.
self injury or such is not good and means that you are in a lot of mental and emotional pain. this too will lead to awful judgements from the doctors you will encounter throughout life.
once they see self injury you will immediately be seen as a malingerer, a nutter and lunatic!
self injury is a real response to inner turmoil.
contact Aspire and your local support group for people wit h Autism and AS.
these people, even though little help is out there are very very supportive of people with as and in trouble.
they will and can be on the end of a telephone line for comfort and encouragement.
remember though, there is very little help especially once you become an adult and all that is supposed to go with that after 18. all grown up and an |Adult, little do they understand that a lot of adults are never such and never will be and many want to be and many do not even act in an adult fashion.
take heart...just stay calm and try to self comfort, do small things each day that will make you proud of yourself. nothing big, do not look at the bigger picture right now.
and lastly on the family, dont even consider them just right now, dont go down the road of trying to sort the barrier there just right now. you have to care first for yourself.
i was rubbished all my life by family and i still do not have them. i am 60 with a very rare syndrome and a shortened life expectancy. so its important to feel that each day is Alive and vibrant and worth it.
it is, i feel, verymuch so.
take care:)