autistmum's blog

MOTHER, Can you spare a dime? or rather £450.00?

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Posted July 4th, 2009 by autistmum

Autism Ulster/Autism NI together with an events company are organising an autism conference for July 2010 in Belfast (after a full month online, the link to the conference is today, inaccessible (under construction) - maybe AutismNI read this blog and are rearranging their fee schedule to make the conference accessible to parent/carers?)

If you have £450.00 to spare, you can attend this two day event. If you book early or if you are selected to present a plenary session you will save £100.00. I do not understand why AutismNI/AutismUlster with their 24 staff had to hire an events company to organise this conference as surely that many staff should be able to prepare a conference with ease. They are after all 'autism experts'. I expect that the fundraising efforts from parents like these (see: eyhttp://www.tyronetimes.co.uk/2617/Mum-tells-of-daily-battle.5280054.jp) will help AutismNI/AutismUlster pay the bills from the events company and more.  read more »

Middletown Centre for Autism - Research Bulletin is a joke

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Posted June 9th, 2009 by autistmum

Middletown Centre for Autism Quarterly Research Bulletin

I have had sight of the much awaited first issue of the Middletown Centre for Autism's Quarterly Research Bulletin (May 2009). Thanks to teacher friends of mine, a photocopy of the original photocopy was forwarded to me. No glossy paper here, just a colour photocopy.

It also seems the Middletown Centre for Autism staff are not computer literate otherwise the bulletin would have been linked on their one-page website. Considering they have wasted seven million pounds, it might be prudent to find ways to save money on postage costs.

I wish my friends hadn't bothered showing me this piece of trash. There are so many other pressing issues to cover than this, but after reading the A5 (4page) piece of disappointing irrelevance, I had to comment.

The 'bulletin' is prefaced with a letter from the CEO of Middletown, Mr Gary Cooper, thanking those who contributed to the content (the monkeys at Belfast Zoo were chuffed).

The remaining 3 pages of the photocopied 'bulletin' contain 5 abstracts. Four of these are from the same journal and same volume of that journal (Journal of Autism and Developmental Disorders, Volume 39. )  read more »

MIDDLETOWN CENTRE FOR AUTISM - Funding Cut

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Posted May 24th, 2009 by autistmum

Middletown Centre for Autism - Funding Cut

SPECIAL NOTE:

A number of individuals (you know who you are) have contacted me anonymously with some very interesting facts and figures regarding autism/advocacy/politics/issues in Northern Ireland. If you are reading this I would be grateful if you would consider contacting me again. The fact that you felt your voice could only be heard anonymously, that you had to protect your identity (and ultimately your children's identity), says a lot about the state of affairs in Northern Ireland.

I detect a level of fear and intimidation felt by some parents to speak out against the status quo. One of you even intimated the fear of litigation being lodged against you if you expressed your real opinions. This is appalling. I doubt very much that you are the only people in the North who feel this way.  read more »

Autism Legislation in Northern Ireland

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Posted May 14th, 2009 by autistmum

Tuesday, 12 May 2009


To readers, this update is long and laden with many issues/concerns. I have been talking to a lot of parents recently, particularly parents of newly diagnosed children. Without exception, these parents are scared, isolated, confused and angry that following the diagnosis of their child, (a diagnosis some of them had to beg for), no help has been forthcoming. I brought up the issue of the proposed autism Act with a number of these parents and after explaining what the Act is really about, they were unanimous in their response. "Give us access to knowledge, give our children appropriate social and educational opportunities."

One parent in particular asked me "what good is an autism Act when we are sitting here with a child who doesn't know its own parents? He needs help, we can't afford it and in Northern Ireland, even if we could afford it, it's not available."

The autism charity AutismNI (Autism Ulster/PAPA/ACT) has lobbied for some time for legislation (they want it to be called the 'Autism Act') to underpin the "rights" of individuals with an ASD in Northern Ireland. When convenient, AutismNI/Autism Ulster rolls out their support of this non-existent Act to show how committed they are to the label of autism. The idea has dragged on for years, and is really just a stick that AutismNI/Autism Ulster grabs to beat it's own drum.

One cannot examine the proposed legislation without looking at the organisation that is spearheading it.  read more »

Autism Wars in Northern Ireland

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Posted March 21st, 2009 by autistmum

Friday, 20 March 2009


Autism Wars in Nothern Ireland

In Northern Ireland autism is a war. It's a war of attrition, the unrelenting wearing away by the powers that be, of your trust, confidence, and energy. Sometimes even hope, the eternal reserve of the forsaken, is lost too. This war is not about those who have the condition. Like all wars, its about money. It might look like its about making things better, but really its just about the money.

Not everyone in Northern Ireland knows this but there are still children and adults with autism, living in Muckamore Mental Hospital, some of whom have been there a very long time and who are now institutionalised. Who knows if their lives could have been different if it wasn't for this war. Is it inevitable that they had to end up there? Was this their destiny from birth? Mental health problems associated with having autism are common and totally misunderstood and tragically mishandled. In the link below is a culmination of the thoughts of some of the parents of these individuals. In reading it, the fear they have of their loved ones being as they put it "re-settled" is palpable. Imagine having to fight to keep your child institutionalised. I am not making a value judgement here, their situation is what it is and they no doubt made the best decisions they could as parents and with what they were offered in terms of help. But as I look on the face of my young child I cannot accept or comprehend such a fate. Who knows what his future holds, but I would not want this for him and I am quite sure, nor would he. see:  read more »

Autism Northern Ireland

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Posted March 20th, 2009 by autistmum
 

Sunday, 15 March 2009


The Voice of Autism in Northern Ireland

AutismNI, what is it, what does it do?? I have asked myself this for the past decade since my child was diagnosed with autism. Lets face it they aren't exactly the most well known autism charity in the world, in fact many parents in Northern Ireland have never heard of them. Yet, one would be amiss not mentioning them.

AutismNI have a lot of staff and they seem to have lots of money. At first glance, it would appear they are doing something useful. No charity could be in existence for 20 years with that kind of money (I think they have 24 staff now, maybe more) and not be doing good work. No charity could have the same CEO for so long together with other long standing members and not be top of their field in knowledge about the condition.  read more »