Autism NI/Autism Ulster and its PAL

The Parent Autism Lobby (PAL) was launched in July 2009 by the charity Autism NI/Autism Ulster. (see page 3 here: www.autismni.org/news/ebulletinJulyAugust09.pdf. )

I am not sure why AutismNI/Autism Ulster felt the need to create a separate lobby group of its own existing members to separately represent parents. It could be that parents are not being heard within the charity. The Charity claims to have 18 branches across Northern Ireland, branches made up of parents. There are only 1.8 million people in Northern Ireland, so that is one branch per 100,000 people. The rate of autism in Northern Ireland is as yet unknown, but let's say it's 1 in 100. So each branch could serve a potential 1000 members. That's a lot of people, and a lot of voices. Why the need for PAL? Isn't AutismNI/AutismUlster providing a platform for all those voices?

The PAL group was formed at the same time as the launch of the new Northern Ireland Regional Autistic Spectrum Disorder Network (RASDN) in June 2009 www.northernireland.gov.uk/news/news-dhssps/news-dhssps-june-2009/news-dhssps-29062009-health-minister-launches.htm )  read more »

Friday, 30 July 2010

The summer scheme my son attended this year had to end 2 days early. Out of the 20 parents who originally agreed to send their children to the scheme two weeks ago, only eight weighed in with their children. The scheme was excellent, the staff were motivated, fun and excited to work with a full compliment of children who had a range of abilities. The premises were safe, the activities were well structured and varied and the scheme was run in a high density area of population. It was assumed it would be fully subscribed and it was. Problem is 12 parents who signed up didn't bother to show up with their children.

The news was awash with stories of summer schemes for 'special' kid losing their funding. This was not the case where I live. The summer scheme that parents were complaining about most vociferously was in the Down area and was actually a finite program that was going to end anyway. Where I live there were numerous summer schemes available for my child that were inclusive. Due to lack of attendance, I doubt many of them will be there next year.  read more »

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 Quarterly Research Bulletin

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

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 »

Tuesday, 12 May 2009

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.

Friday, 20 March 2009

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 »

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 »