Aspergers Syndrome Advice

stcatherine

Hi Folks,

really I was hoping to get some advice, help or even just someone to talk to who can relate to living with someone with ASD.

My 9 year old son was recently diagnosed, and in the process it has become apparent my husband also has it. ( lucky me ! )

I live in Rural Kilkenny and I don't drive so there really is no way for me to get to a support group.

I'm just looking to touch base with people who understand and can advise of services etc available.

I have been in touch with AspireIreland looking at their Drama group which seems to be a really great idea.

Other than that I'm kind of on a limb at the moment, my sons paediatrician has written a letter of referral to our local Autisim Unit so I'm waiting to hear from them.

but you can't beat talking to people who have been through it all, or even just having someone to moan at ...

Many thanks

cat

The Black Oil

You've probably already seen this site, but if not..
http://www.aspergersupport.ie/

magnumlady

The drama group sounds good. I'm sure the autism centre can help too. There is a great facebook page....but for the life of me I can't find it at the moment. As soon as I do I'll pass it on.

magnumlady

Found it:
http://www.facebook.com/Irishautism

stcatherine

thank you

I heard back from aspire about the drama group and unfortunately they have YEARS of a waiting list it's very disheartening.

I'm wondering if he would qualify for something like Horseriding for the disabled or something.

because of his physical weakness.

Really theres very little help out there and until the Autisim unit get back to me I feel like im floundering.

Eric Isherwood

Hi my name is Eric from http://www.autismtrustireland.com my advice to you as you are in sligo is to contact kevin Whelan of IAA tel 086 816 3067 also look up kirstein Greig who is at UCC in Cork has Aspergers but struggled with it all her life but found help and is now as i said at UCC.Also look up http://www.garryburge.com he also has aspergers and will be coming to ireland in June or July you can also Skype him.Hope this has been of some help.

aspie mum

stcatherine wrote: »

Hi Folks,

really I was hoping to get some advice, help or even just someone to talk to who can relate to living with someone with ASD.

My 9 year old son was recently diagnosed, and in the process it has become apparent my husband also has it. ( lucky me ! )

I live in Rural Kilkenny and I don't drive so there really is no way for me to get to a support group.

I'm just looking to touch base with people who understand and can advise of services etc available.

I have been in touch with AspireIreland looking at their Drama group which seems to be a really great idea.

Other than that I'm kind of on a limb at the moment, my sons paediatrician has written a letter of referral to our local Autisim Unit so I'm waiting to hear from them.

but you can't beat talking to people who have been through it all, or even just having someone to moan at ...

Many thanks

cat

Hi I am a mum Of 2 one who was also diagnosed with ASD at 9 now 11 and one girl who is 4 and waiting for an assement, so i know how you feel I suspect my OH may have traits but dont dare sugguest it.Pm me anytime for a chat and also i will give your details of benfits etc but as regarding intervention and services its totally crap in this country....google Temple Grandain and you will get some utube videos of her she is a woman living with asd and is execptional accomplished in her field...an inspiration to all

aare

Stay AWAY from Aspire...they have some really questionable agenda and a pronounced aversion to adults with AS thinking for themselves.

Frankly, any of the major Autism orgs are much the same and association with them will not do your marriage any good (sorry to be blunt, but I can't think of a tactful way to put it!). It's simpler if you only have a child with an ASD, but as soon as you have a partner with ASD as well you are in "conflict of interest" infested waters, as far as the eye can see.

On one hand you could say that is splitting hairs with a little boy in the middle, but on the other hand it isn't going to do him much good, in the long term, if the people who are supporting you are dedicated demolishing his dad's autonomy and self esteem.

You can touch base with http://www.icaan.ie (more contact details here http://damonmatthewwise.info/gpage.html - "open email at Christmas whether they are expecting something or not" people, better by phone ) At least you will have an excellent pilot to guide you through the shark infested waters of Autism in Ireland.

You could also contact http://www.loffa.ie which is laoise/offally (but they are easy about county borders), and whatever the affiliations is run by super open minded people I would trust with my life.

Mr Trade In

Hello, does anyone know of anywhere in the Dublin area or even in the greater Leinster area who provides a Multi-disciplinary Team Assessment for Aspergers?

aare

HSE:
Beechpark Service, Bryan S. Ryan Building, Main Road, Tallaght, Dublin 24 Tel: (01) 463 2210

Others:
Lucena
http://www.lucenaclinic.ie/index.htm

Insight Centre
9 Sycamore House
Millennium Park
Naas
Co Kildare

01 2452140 / 045 874622
info@insightcentre.ie
http://dev.insightcentre.ie/ (yes that IS the URL for now, they have it set up on an unfortunate subdomain for some reason)

Solas Centre:
http://www.autismireland.ie/about-iaa/466/
(About 1200 euros last time I heard.)

Mr Trade In

Sorry should have put in the post,this would be for myself a 29 year old.

aare

Solas will do adult assessments (though not very sensitively, the last one I saw referred to a 23 year old as "the child" all the way through)...and so will Insight (unless I am mixing them up with another place in Naas).

You are probably best to go to Prof Michael Fitzgerald, but he can only do a diagnosis, not a multi disciplinary assessment) I'll pm contact details.

Or try calling:
John Faassen
Centre Manager
EVE Ltd Tuiscint
Ph No. 01-4985833
Centre Ph No. 01-4911473


He could advise you best I think. Very nice guy and adults with Asperger Syndrome are his business.

zyndacyclone

I've not been that impressed with Aspire.

Try http://www.wrongplanet.net/forums.html these online forums. Lots of nice folks with similar problems there.

aare

Not so sure about wrongplanet since they sold out to "Autism Speaks" last year. All sorts of head games and creepy agenda around there...I am just not sure of anywhere else to recommend instead.

I have honestly never met anyone with a good experience of Aspire.

zyndacyclone

Aspire are awful. I'd seriously love an alternative in Dublin.

Wrongplanet is great as long as you stick JUST to the forums, and what this poster seems to need is someone to talk to. I agree that the rest of the site is unhelpful, but then no one ever visits it

aare

Ah but see that is the thing, I found some really bizarre headgames with "Autism Speaks" PR team stamped all over them kicking off on the forums too of late...and always from members who signed on since last September.

You could post there for months without noticing, or get caught up in one in the first few days, so the effect can be really weird and unstable.

I haven't participated there in years. Most of the resources are on facebook these days. If you start off with ASAN:
http://www.facebook.com/pages/Autistic-Self-Advocacy-Network/105696316129567

...you will soon meet up with other people on the spectrum and find groups that suit you without the risk of any threads of questionable agenda running through them.

There are not, to my knowledge, any specifically Irish support groups on or off line at this time. I think partly *because* of organisations like Aspire who founded themselves to speak for us, and make our decisions for us, ideally in our absence. As a result two whole generations he grown up without enough confidence in their own autonomy to form any.

There is a small social group but that really depends, as any social group should, on whether you fit in and get on with the individuals involved or not.

zyndacyclone

Let me put this in a different light. I'd say that a lot of aspies socialise online. I've seen more than a couple of attempts to get aspies to socialise in person fail miserably cause no one shows up. (I mean seriously, I once spent two hours in my wardrobe to avoid going to a party and my phone is perpetually unplugged. I keep it in my fridge so I don't lose it.)

Even if wrongplanet isn't to your liking, I'd look for support online as that's where you'll find most aspies. It's sweetly anonymous, easy to turn off, and easy to hide from. You'll get more support online than you will irl in Ireland.

Happy to find that I'm not the only one skeptical of aspire.

aare

Believe me, those sceptical of Aspire are far easier to find than those who support them these days...as soon as they know they are among friends...

In fact it is pretty disgraceful that an organisation that claims it's mission is to support people with Asperger Syndrome to lead independent lives should be maintaining a support base just by intimidating the very people they claim to support.

Eric Isherwood

aare wrote: »

Believe me, those sceptical of Aspire are far easier to find than those who support them these days...as soon as they know they are among friends...

In fact it is pretty disgraceful that an organisation that claims it's mission is to support people with Asperger Syndrome to lead independent lives should be maintaining a support base just by intimidating the very people they claim to support.

Have you anything positive to say about any group?

aare

Eric Isherwood wrote: »

Have you anything positive to say about any group?

Not in Ireland, no...unless you count ICAAN.ie, but that's just us autistics on our hind legs pretending we can speak for ourselves instead of submitting to idio...er...sorry. "our betters" like you.

Didn't discourage you from plagiarising my research to use against IAA though, did it?

Bicycle

My son is 10 and was diagnosed with Aspergers within the last year.

We are living in the Limerick area and have been very lucky. He has already had Social Skills Training in school and will continue with a training module (1 hour a week for 6 weeks or so once a year) for the foreseeable future.

We haven't joined any support groups but we are members of Limerick Dyspraxia Association because both my son and one of his sisters also have dyspraxia. The dyspraxia group are very helpful.

In terms of reading, I found Tony Attwood's Book on Aspergers very helpful. But if you go to your local library you should find other books - Limerick City Library has a good range of books.

aare

Have you come across "Dochas" yet?

http://www.dochas.net/

Excellent group run by a high proportion of sane human beings, I promise.

Well worth checking out.

sdanseo

Apologies for the mini-essay, just attempting to give a small insight into the condition.

I'm 22 and have AS, but luckily it's what I can only describe as a "mild dose". Any of the other people my age I've encountered who also have it have been considerable less sociable and in considerably more difficulty than myself.

Being honest though, my perception of that is probably a little skewed and when thinking about it I am less happy about my progress sometimes than a lot of those same people in the sense that maybe I don't like accepting it, whereas most seem to just see it as an obstacle and work around it, I've often tried to see straight through the obstacle. Which results in hitting it head on, occasionally. I want to be 100% normal, and sometimes dissapointed (but never properly depressed, thankfully) that I'm not capable of the social antics my peers are. That said, I'm at the stage where I've got so used to it that it's only ever something that will get it my way from time to time rather than every day. It's just something that's there in the background and flares up around some social interactions with peers.

Treating AS as autism, is in my opinion a mistake. It is not autism, although on the same wavelength. It's like calling a cold the flu. It leads to a stereotype, and more importantly, theres a difference. Autism is something which renders someone almost incapable of interaction, social or otherwise. AS, on the other hand, makes social interaction awkward and in a lot of cases, frightening. It also come, in my case, with hypochondria at times, but never so serious that it can't be shoved to one side if there's something important to think about.

Seek out a guy who works out of NUI Maynooth by the name of John Harpur. He ran a group talk type session over a number of weeks in Maynooth and there were 7 of us all in the same boat with varied degrees of social difficulty (but all with AS) who met on a regular basis after that. John was a godsend although we hated him like a grumpy teacher at the type and it was great to meet people in such a close setting and literally just chat through various different stories. This was at an older age, however, we're talking 15-17.


If you need any more info about anything drop me a pm!

aare

Hi Sdonn,

The only problem with your hypothesis is that AS most certainly *is* autism, and it can be crippling, even, and perhaps especially when it "hardly shows".

Let me explain how that works.

For typical, ordinary people, in social terms, familiarity breeds contentment and ease.

For any autistic, familiarity breeds social complexity faster that he can breed intellectual and analytical social coping skills to keep up.

The more "normal" he looks, the higher other people's, instinctive, expectations of him are, and the further up that scale of social familiarity/complexity he can be drawn in...with a propensity to fail proportionate with how far up the scale he is percieved to belong.

To simplify that a little...the higher up the social ladder you fit in, the harder and faster you fall.

Then there is the, almost inevitable, constantly compounding PTSD that snowballs from the ongoing accumulation of social failures.

So that, the closer you get to people, or even the older you get, the further behind your compensatory social skills fall, resulting in further compounding trauma.

Having said that, on the other hand, if you have a loving, supportive family you have every chance of a life as successful and fulfilling as anyone else's...as long as you forget about trying to *be* normal.

You are not normal, and you never will be...the good news is that applies, in different ways, to everyone you will ever meet.

Unfortunately, at present, most available "resources" focus on either:

• Self perpetuation through disenabling
• Training to *appear* normal

The first is despicable, power/profit driven, and, sadly, not limited to autism simply because the potential profit in residential service provision is far higher than in any other form of service provision. All you have to do is convince your target market that they need to be helplessly dependent on *your* services. Autistics are the easiest target market of all, because we find change so hard to adapt to that, once habituated to a prison, we become terrified of liberty.

The second is dehumanising because it depends on treating us as if who we are, and how we feel inside (where 90% of most forms of Autism exist) does not count as long as we "keep up apperances" by rote that have nothing to do with who we are or what we might wish to assert. It is also counter productive.

I believe you are far better off avoiding all available AS specific resources at this time (not because you do not need any help and support, but because they have nothing truly useful or worthwhile to offer).

Better to rely on traditional family and community supports and the odd serendipitious soul who crops up like John Harpur, Prof Fitzgerald and a few others I have found in the stragest places who actually "get it" and have something useful to contribute.

...and if you do not have access to healthy family and community support, please do not ask me what else you can do instead, because at this time I have no idea.

cathy01

www.thechildrensclinic.ie

Dr Sean Fennel. he is retireing soon,so give him a quick bell.Cathy

Mr Trade In

Sorry to hijack this thread, my GP seems to think I was misdiagnosed with Aspergers Syndrome, she thinks I suffer from poor self-esteem nothing more. I was diagnosed by Prof. Fitzgerald in 2007.After 3 years of trying I am now in 2nd year of university studying Ancient History and History. I don't speak to or know the names of any of my classmates nor do I want to.I get taxis everywhere I go including university mainly to avoid the many people on public transport. I don't go to family social events as I don't want to talk to anyone at them.

I collect but rarely use retro videogames,DVDs,Pokemon and YuGiOh cards, books by Neil Gaiman, coins and other junk to the point where it is all I spend my money on.
I never leave my house to socialise as I have no friends and I say very offensive things to family members and people who do know me more often than not without realising it will or has offended them.

I told my GP 5 months ago I would like to get a second opinion, I mentioned a multi disciplinary assessment in order to narrow which areas I have most difficulty in,she as far as I can tell misinterpreted this as me questioning my original diagnosis,I do not know how to resolve this situation.

flutterflye

Mr Trade In wrote: »

Sorry to hijack this thread, my GP seems to think I was misdiagnosed with Aspergers Syndrome, she thinks I suffer from poor self-esteem nothing more. I was diagnosed by Prof. Fitzgerald in 2007.After 3 years of trying I am now in 2nd year of university studying Ancient History and History. I don't speak to or know the names of any of my classmates nor do I want to.I get taxis everywhere I go including university mainly to avoid the many people on public transport. I don't go to family social events as I don't want to talk to anyone at them.

I collect but rarely use retro videogames,DVDs,Pokemon and YuGiOh cards, books by Neil Gaiman, coins and other junk to the point where it is all I spend my money on.
I never leave my house to socialise as I have no friends and I say very offensive things to family members and people who do know me more often than not without realising it will or has offended them.

I told my GP 5 months ago I would like to get a second opinion, I mentioned a multi disciplinary assessment in order to narrow which areas I have most difficulty in,she as far as I can tell misinterpreted this as me questioning my original diagnosis,I do not know how to resolve this situation.

To be honest, while it is always good to get a 2nd or even 3rd or 4th opinion, I would rarely trust the gp with regards to things like this.

If it wasn't for my going from gp to gp to gp demanding a referral for my son, he would still be undiagnosed with aspergers and adhd - which he most certainly has!

Also, both my current gp, and my previous gp refused to believe that i have add, when I clearly do, and I went through months of tests with a team to be diagnosed in the first place.

I genuinely do understand your frustration and confusion, but when it comes down to it, the only real reason we need a diagnosis is to enable us to receive the treatment we require.
So which best gives you the treatment that you require - the label of aspergers, or being told you have poor social skills?

Which do you personally feel fits best?

Do you have any rigid habits or thought patterns, deviating speech patterns, poor motor skills, an obsession or preoccupation with a particular hobby or interest, great difficulty reading others or understanding the feelings off others etc etc etc...?

stcatherine

As this thread was bumped recently ( and no worries Mr Trade in ) I thought I'd do a quick follow up ...

Having taken all the advice into consideration and attending a couple of workshops where I met other parents going through similar things as myself I kind of took matters into my hands and we started our own much needed support group for families affected by ASD's in whatever form of diagnosis.

Really I'd have to say the best place to get advice and help is from those in the same boat and not necessarily those in charge of the lighhouse.

Mr Trade in, I can't imagine what it must be like for you, I'm curious as to what ( if any ) signs or ( for want of a better word ) symptoms you had as a child ?

where ASD is concerned it's the whole picture that has to be taken into consideration, it's not something you develope of course so there would have been signs as a child and young adult. Did your GP go through all of that with you or just concentrate on the challenges you are experiencing as an Adult ?

blue000127

Hi i was wondering is there any support groups for adults with aspergers syndrome in Dublin Ireland i need a bit of help with mine. I lack in social skills and find it hard to make friends. Is there any social groups in Dublin that aspergers syndrome adults attend

dignam

sdeire wrote: »

Apologies for the mini-essay, just attempting to give a small insight into the condition.

I'm 22 and have AS, but luckily it's what I can only describe as a "mild dose". Any of the other people my age I've encountered who also have it have been considerable less sociable and in considerably more difficulty than myself.

Being honest though, my perception of that is probably a little skewed and when thinking about it I am less happy about my progress sometimes than a lot of those same people in the sense that maybe I don't like accepting it, whereas most seem to just see it as an obstacle and work around it, I've often tried to see straight through the obstacle. Which results in hitting it head on, occasionally. I want to be 100% normal, and sometimes dissapointed (but never properly depressed, thankfully) that I'm not capable of the social antics my peers are. That said, I'm at the stage where I've got so used to it that it's only ever something that will get it my way from time to time rather than every day. It's just something that's there in the background and flares up around some social interactions with peers.

Treating AS as autism, is in my opinion a mistake. It is not autism, although on the same wavelength. It's like calling a cold the flu. It leads to a stereotype, and more importantly, theres a difference. Autism is something which renders someone almost incapable of interaction, social or otherwise. AS, on the other hand, makes social interaction awkward and in a lot of cases, frightening. It also come, in my case, with hypochondria at times, but never so serious that it can't be shoved to one side if there's something important to think about.

Seek out a guy who works out of NUI Maynooth by the name of John Harpur. He ran a group talk type session over a number of weeks in Maynooth and there were 7 of us all in the same boat with varied degrees of social difficulty (but all with AS) who met on a regular basis after that. John was a godsend although we hated him like a grumpy teacher at the type and it was great to meet people in such a close setting and literally just chat through various different stories. This was at an older age, however, we're talking 15-17.


If you need any more info about anything drop me a pm!

Do you have a contact for John Harpur in Maynooth

Regards

David