Money for Nothing

You no doubt remember fundraising appeals from third world charities asking you to sponsor and give money to the ‘poor’ children of Africa with images of sorrowful little faces on begging boxes and cans, underscored by patronizing and trite appeals to your sense of sympathy and justice…AutismNI/AutismUlster’s public relations team have copped on to the power of ‘feeling sorry’ in their recent fundraising campaign. Nothing like using pain, unhappiness and pity to get what you want.

Instead of the ‘poor black babies’ of Africa, their focus of course, is our own ‘poor little autistic’ children.

Here is an excerpt from their ‘gifting’ postcard. For those of you who have not paid your membership to AutismNI/Autism Ulster, you will not have sight of the offending article. It features the photo of a child who allegedly has a diagnosis of ASD. The writing underneath his photo states, -

“This child has a diagnosis of autism. He may never develop language, is unable to relate to the outside world in a meaningful way and gets upset when taken away from familiar things. He also does not sleep well, will only eat certain foods and is very sensitive to noise. This is Autism. (Is it?)

Arggggghhhhhhhh ….it goes on….

“But you can help! Through your support we can provide effective services to families who have a child with Autism and can enable the 20,000 people in Northern Ireland affected by Autism to become valued members of the community.”

(Interesting to note that AutismNI/Autism Ulster has had 20 years to do this so far, and it still hasn’t happened in any way whatsoever!)

On the reverse side of the postcard suggested donations are outlined : -

£4.00 – will pay for an information pack to be sent to parents of a newly diagnosed child
£20.00 – will support our parent/user helpline
£30.00 will pay for a counselling session with a family support worker.

(£50.00 will pay for an ox, a goat, a chicken coop – you get the picture)

Considering Health Trusts already fund AutismNI/Autism Ulster for many of their helpline/counseling workers, I don’t understand the need for more money in this regard.

But, let’s get back to the language used by AutismNI/Autism Ulster to describe autism. Don’t you just love it when the word ‘never’ is used regarding our children. Self fulfilling prophesies abound regarding our kids and feed the autism industry no end. Who is AutismNI/AutismUlster that they know anything about the possibilities of our children.

The description of autism here is offensive in the extreme. Instead of dwelling on impossibility, (for which there is no such thing regarding our children) they could have said, ‘he WILL develop language if only we could get it together to get our finger out of our proverbial and provide a concerted challenge to society to change their beliefs about our kids and lobby for programs (and not expensive autism bills) that are individualized and tailored to the specific child and his family.’ It begs the question of what is the point of contributing your hard earned cash to this charity if they believe our kids are lost causes. Autism is treatable, and recovery from autism is possible. AutismNI/AutismUlster promotes a self fulfilling prophesy for our children and seems to be expecting you to pay for that. Why? If our kids are so hopeless, why bother?

They could have said, ‘this child relates to the world in a different way, one that is fascinating, unique, authentic and totally within the ability of society to understand, if only they would shuffle off their skewed beliefs about the importance of ‘conformity’, and what is ‘acceptable’.

They also could have said, ‘peer reviewed research around the world is consistently pointing to the environment as a possible causation of autism and your donation will help us fund quality research and a care pathway for children suffering from sleep disorders, gut dysbiosis, allergies and other physical correlations with an autism spectrum diagnosis.’ (Of course, when you have a charity who accepts money from huge pharmaceutical companies who ply drugs to our children and their parents, you aren’t going to bite the hand that feeds you!) AutismNI/Autism Ulster was very happy to accept money from Glaxo Smithkline here: http://www.autismni.org/news/pressreleases_view.asp?ID=25

AutismNI/AutismUlster takes the low road in this regard. The biggest joke of this fundraising campaign is on the reverse of this card, where they state that AutismNI/AutismUlster ‘increases the quality and range of services available for individuals with Autism through training and education. Northern Ireland still provides one teaching program for our kids (TEACCH), no ABA, no Montessori, and limited funding for alternatives for home educators who want something specific to their children. Every year, talking heads from North Carolina TEACCH central come to Northern Ireland to drone on about the same old thing. By now, we should have had many of our experts in this 'system' who could provide in house training across the province instead of having to spend thousands of pounds continually year after year.

Speech therapists are scarce (and often useless), sensory integration is virtually unheard of and autism specific schools, well that is another matter altogether. Meanwhile parent members of AutismNI/Autism Ulster waste their time echoing and fighting for the political aspirations of Arlene Cassidy and her buddy Iris Robinson, wasting their time picketing the offices of certain political representatives who have eschewed the autism bill in favor of common sense.

‘Quality’ and autism services in Northern Ireland anyway, is an oxymoron. We need a good outcomes study of the millions of pounds already spent on so called autism training. Classroom aides in mainstream schools are wholly under-trained, if trained at all, parents get even less access to training unless they want to pay for it.

Meanwhile ‘our’ autism charity continues to tout our children as potential lost causes, making money off their backs and off their diagnosis’.

The fact that children all over the world are losing their diagnosis’ of autism doesn’t seem to interest AutismNI/Autism Ulster. Why would it? This should be on the front pages of AutismNI/Autism Ulster's web site. But no, not a dickey bird. Better to keep that kind of information hidden in case parents start to ask for more for their children. Here is an excerpt taken from AutismNI/Autism Ulster's quarterly newsletter (Summer 2008). An article entitled 'Autism', written by a 15 year old girl explains her take on autism. As the article was vetted for the said newsletter by the charity, I presume the charity agrees with it as well. "Remember", she says, "Autism is a lifelong sentence and cannot be treated." Again, if that is so, why is it that on virtually every page of the newsletter does the charity beg for money for those 'untreatable' children? Why not just call for the blanket institutionalisation of all children with autism?

AutismNI/Autism Ulster appears to be working closely with Autism Initiatives (provider of group homes, etc) this is, in my opinion, a nice little number, a cozy airtight relationship – with one group guaranteeing the existence of the other. Autism Initiatives would not be building group homes all over the province unless they were sure they would be filled. ‘If you build it, they will come’ springs to mind. Continuing to use words like ‘never’ will ensure a steady stream of in-mates for these facilities.

AutismNI/Autism Ulster is proud of its 20 year history. I don’t know why. The only reason the charity has been allowed to flourish is because the statutory sector relinquished it’s responsibility to our children, favoring instead, to delegate the ‘problem’. AutismNI/Autism Ulster was ready and waiting to keep our kids in a holding pattern that now employs 24 staff.

The lack of, in fact the clear absence of lobbying by AutismNI/Autism Ulster for real services and training in the province attests to this fact. The only 'lobbying' of the charity has been Arlene Cassidy’s autism bill, which is now dead in the water. Politicians have realized how they had been duped, but moreso, how much it would cost, both in legal challenges and in rolling it out.

But back to the topic of this blog entry. Before you even consider giving one penny to AutismNI/Autism Ulster, please ask yourself the following questions: -

Is it ethical for the charity to fundraise from already financially overstretched parents?

Are you sure where and for what the money is going to be used for? It costs a lot of money to pay 24 staff, money that could be used to actually lobby for real change in this province. With that many employees, the government should be inundated with demands for positive change for our children. We shouldn’t be in the mess we are currently in. Does AutismNI/Autism Ulster need money for more public relations, media and lobbying tables? Is anyone asking these y questions? Does anyone actually know or care how much the charity has spent on lobbying for the autism bill? Maybe Iris Robinson knows and should indeed be asked.

Could you do better? Could you start your own autism support group and elect someone to carry out research, a scoping exercise of services in Northern Ireland? Could you disseminate that research to the wider community for free? Could you fundraise monies from the lottery or from private patrons and use it directly for your children? I bet you could, I know you could. And I am sure you could do it without the need of employing 24 people.

AutismNI/Autism Ulster will never receive a penny from me until it starts demanding what my child needs as an individual first. To date I see nothing of interest on their website, in fact compared to the NAS website, it is a blank page. There is so much going on regarding autism in Northern Ireland right now with the RASD autism strategy – yet Autism NI/Autism Ulster remains silent.

I believe AutismNI/Autism Ulster has spent much time and money and effort lobbying for something I did not want, the government does not want, and something my child does not need. Instead of financing the political aspiirations of AutismNI/Autism Ulster with your hard earned cash, a simple phone call to the charity might be better. Ring them and ask them for their current financial statement and an explanation of how next year’s projected budget is going to be spent and how it will benefit your child. The worst that we, as parents can do, is to just assume. That is what the statutory sector has done for 20 years and that is why our children are living in this current mess.

The rot we currently face regarding autism, here in Northern Ireland does not solely rest with AutismNI/Autism Ulster. Science loves a vacuum and the charity filled that vacuum. I am hopeful for the future though, as more parents are becoming aware, are being empowered and governments officials are realizing the error of their ways. Big things are afoot in Northern Ireland regarding autism and they have nothing to do with AutismNI/Autism Ulster or any other charity for that matter.

It’s an exciting time and should be embraced. The word ‘never’ is slowly being removed from the autism lexicon and the autism dinosaurs here are having to face their own extinction. To all the wonderful, astute, well informed parents I have met in the past 2 months, I say thank you and thank God for the opportunity to have met you all.

Nothing stays the same forever, even here in Northern Ireland! Exciting times are ahead whether you fund AutismNI/Autism Ulster's 'never' campaign, or not.

UTV wins autism Stupid award!

UTV (Ulster Television) are not exactly known for their research capabilities and I don't think any of their presenters or producers even know what the word 'erudite' means, but a cursory google search would have imparted to them more information than what they wasted 9 minutes of airtime on in this short piece which aired this past Tuesday evening (link embedded above). If you want to see the program for yourself you can watch it on UPlayer until November 13th when it will be removed from their website thankfully.

The opening 5 minute vignette about autism featured a parent and her 7 year old son. There are a myriad of ways in which informed parents could have have been interviewed by UTV to help dispel the myths about our children and what they need. This program wasnt about dispelling myths though. It was about pandering to the existing system and asking for more of the same. Charities like AutismNI/AutismUlster could have selected the mother featured in the program as she laments the fact that she needs more of what groups like AutismNI/AutismUlster offer (training in TEACCH, Pecs, etc)

This parent lamented the lack of services, the long waiting list she encountered in having her son diagnosed (two years) as well as her fears for the future of her son once he leaves his special school at the age of 19. Much of her worry centered around whether or not her son would find employment when he reached adulthood.

This is where I started screaming at the television....I don't believe this parent deliberately set out to mislead the public, though I do believe UTV cynically chose this parent to guage sympathy rather than inform. The viewer is told how her son received six months of a TEACCH program and how he was six years old before he received any benefit from interventions.

TEACCH is not appropriate for children with an ASD. TEACCH is a system of control set up to embed routine into the individual's day to repress and suppress personality, spontaneity and of course motivation. It is not a social communication program and in fact the TEACCH trainers admit that is so. It is cheap, and teachers love it because it allows them to put structure into THEIR day and keeps autistic kids and adults quiet. Coupled with the PECS system, it's a sure fire way to prevent any child from ever having an independent life, a happy life, a life of equity with his or her peers. It is NOT an intervention for autism.

The parent then went on to talk about how routine plays a big part in her son's life and the life of autistic children. If only she could have given this a bit of thought and hadn't internalised the lies that professionals fed her, she may have concluded differently. Clearly someone along the way had spun her a yarn, a yarn so big that all it needed was a self fulfilling prophesy, in the form of TEACCH and of course in the form of a charity that makes money at rolling out the said program. (by the way, does anyone know how much money AutismNI/AutismUlster has in its coffers?? anyone bothered to find out, or even how much they have spent or been awarded to roll out TEACCH?)

Why wasn't this parent asking for something else. She says that her son received no benefit from 'interventions' offered, until he was six years old. Maybe she believed (or was led to believe) that 'autistic' kids take a long time to learn and that well, you know, it's the autism, etc etc.

This parent went on, 'you do the best you can with what you have', (I don't know if she was referring to services or to her son). She went on to say that any employment for her son "would have to be very repetitive...there is work out there that is repetitive work and autism children would be the best at that because they do like to repeat everything and I hope that when xx is that age to go out into the world that there would be something for him, but at the moment it doesnt look very good there is no understanding of the autism world."

I doubt any one came knocking on this parent's door to give her and her family choices in the training of specific educational interventions that would individually suit and help her son. I also doubt that she were given much hope by 'professionals' who have worked with her boy. The fact she expects him to stay in the special school (dumping ground) system until he is 19 kind of verifies that.

Persons with autistic spectrum conditions do not like to 'repeat' everything. In fact, I would venture that many individuals with an ASD absolutely hate repetition, even to the point where repetition becomes an uncontrollable co-morbid condition of ASD. If you insist on using a TEACCH program for your child, however, repetition and 'routine' may become so ingrained in your child that he may very well not be able to cope or learn without repetition, it becomes a learned behaviour, purposefully and deliberately projected by those who promote TEACCH.


As I have said before there are over 300 well known educational models for autism now, probably a lot more, that I do not know about. This province has not delivered in any other way for our children so why would any parent think, or accept that an educational model offered (TEACCH) has any merit?

As an aside this parent also said in the UTV program that her child gets up in the middle of the night, and also has some major gut and bowel difficulties. I would ask her to investigate biomedical interventions, homeopathy, stress reduction techniques, cranio sacral therapy, neurological chiropracty, sensory integration and of course her child's diet. His problems are common and unfortunately are not addressed by doctors and paediatricians here until they become life threatening. By the way if you want any of these things, you will of course have to pay for them yourself. You will NEVER get a sensory integration specialist even though it looks like your son really really needs one. Sensory integration is not OT, is not Physio. It's a very complex art and isn't offered here. You need to go to England to get anyone that is any good. But, I thought I would mention it. In fact, your child's special school probably can't even spell sensory integration much less know anything about it.

And now on to you, UTV, you should be ashamed as you knew exactly what you were doing by cynically using this parent and her son to pull the heartstrings of your viewers and keep them watching. I didn't expect anything less though. Your station is not exactly known for rocking any boats. You didnt do your research. Either that, or else the lack of depth of this program was planned on purpose.

Below is an article on how one parent, who believed in his child created something unique and wonderful in terms of employment for persons with an ASD based on their amazing and unrivalled skills. Would this ever happen in Northern Ireland? I doubt it.

Our kids can work, and no they don't need repetition. What they need is for their strengths and abilities to be valued, honoured and respected. My son is never ever going to leave a special school, to enter into the workforce to make baskets or pencils for some government training scheme. If that's where you see your children heading, only one question - why? I say over and over again, if the floodgates start opening up in terms of realisation about how bright our children are, the government will be horrified. No longer will parents buy the crap fed to them about how their kids have learning disabilities, can't do this, or that. It only takes a few parents to lead our kids out of the darkness we have in Northern Ireland. I just wish you would find each other and not waste any more time because no one else is going to do it for us.

http://www.independent.co.uk/life-style/health-and-families/health-news/the-company-that-turned-disability-into-an-asset-1801627.html

Just Leave Us Alone

Parents I know who have children on the spectrum often lament, 'if only "they" would leave us alone', our kids would be fine.

How true. How many times has your child been having a perfectly wonderful day and then someone says something, does something in response to you and your child? I suppose that the outcome of such situations is dependent on how you control your own emotions and behaviour. But sometimes, it's very difficult.

A perfect example of this is School Boards who make it their purpose to heap as much trouble, frustration, financial strain and anquish on you as they possibly can. All of this is in addition to what you are doing for your child at home and and in his community. A parent of child who did not have autism has very little idea and I doubt would even put up with it.

I believe our children mirror the beliefs, attitudes and fears of those around them. My child is not mean to other children, loves all those who love him and is devoid of most of those things that make some humans inhuman. Yet, it takes very little for him to 'trigger' others into cursing him (and me) and even less for others to treat him as something sub-human.

It's not just here in Northern Ireland. I was in a large American city recently and was in a queue waiting to pay for my shopping. My son saw something he wanted in the next aisle and was making it very clear to me that he wanted it. Up until that moment we had been having a perfect day.

An old man queued behind us with his trolley. By this time my son was on his haunches refusing to move. The old man said, if you don't get up I am going to run you over with my trolley'! I shook my head in shock at what this ole crone said and responded with something particularly pithy, vengeful and exacting. The old man recoiled in horror at what I said to him. Meanwhile, my child was oblivious to the old man's threat, and was still protesting on the ground. My son had been physically threatened by an 80 year old who probably had great great grandchildren. No compassion, no patience and no understanding. The best part was my son wasn't even in this man's way. He must have thought I 'needed' a lesson on child discipline, or rather child abuse!

Here in Belfast not too long ago, we had lined up behind a man in an ATM and my child said 'hurry up'(rightly so, the guy didnt know how to use his cash card and was taking forever). Before I had a chance to say to my child that what he said was inappropriate, this man turned around with a horrible scowl on his face, looked down at my smiling son and said, 'what did you say?' in a very threatening manner. I replied 'he said hurry up!'

Muttering something quite distasteful under his breath, he moved away and proceeded to stare at my son and me until we finished our business. I felt like calling the police and could only think about how my son would deal with such a situation if I wasn't there.

Finally, a month ago in yet another queue (queues are such fun) a woman who was standing behind me in what is a very typical Northern Ireland style (she was so close to me, I could feel her breath on my neck,and her trolley was rammed up against the back of my legs) she was 'tsk - tsking about my boy who was touching items in the next person's shopping basket.

I turned around to see where this annoying sound was coming from and saw a very hard looking woman. She was spray tanned, bleached blonde and clearly a victim of middle spread standing with her very young and very pregnant daughter. They both had that 'look', you know the one, particularly in some women with little self esteem who 'dare' you to stare them down. Of course I did stare them down, looking at them from head to toe, just as they had looked at me. I turned to my son and said, 'there are some people behind us who we need to pray for'.

A bit of 'discussion' ensued between me and them. My son looked at these people with a huge smile, oblivious to their scorn and uttered 'hello'. Neither of them responded and my son said 'hello' again. I told him, 'some people don't know how to talk'. Who has the problem here?

Something in what my son was doing triggered the need in all of these people to react negatively. My son is an incredibly happy and contented child and it amazes me how he brings out the worst in people. I can only surmise that either 1. there are a lot of very unhappy people out there, or 2. his failure to comply with their very selective social rules is a threat. Obviously the 16 year old very pregnant young woman who was behind us did not comply with certain rules either and I could very well have made a number of judgements and even comments. Considering her mother was rather formidable looking, I doubt anyone would ever contemplate such behaviour at least whilst she was around. It was ok though for them to chide me and my boy for something completely trivial and unimportant.

The problem, at least in our house, is never the 'autism' - it's usually you.