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:

I believe (from my own personal experience) that there are many individuals in Northern Ireland today, some who even work with our children, who believe that institutionalisation is the "best" place for "them".  When my son was the tender of age of 3 years old, a clinician working with him suggested that due to his hyperactivity and "un-manageability" that I should start thinking of residential school. Also suggested was the usual cocktail of drugs to "calm" him. (translate immobilise)

Drugs and institutionalisation - what a future, what a war is being laid against our precious children. Not to mention the many parents in Northern Ireland who have had social service involvement for not complying with these kinds of suggestions from "professionals" . (Drug them or we take them away)

Civilians, parents like me, unwillingly become conscripted combatants in these autism wars. We are forced to sign up for a tour of duty in a "do or die" fight for services, and for recognition and respect for our children. We pit our best attacks against the "enemy" but it's like we are on foreign soil. Our artillery gets lost on the roads and our troops are picked off by snipers who have bigger and better guns with high powered laser scopes. "War" as an metaphor in the context of autism may be unpalatable to some, but looking at some of the faces of parents who battle each day on behalf of their children, it sure seems like a war.

How could I have been so naive to have once believed my son would receive the help he needs? Or that anyone would care enough to help me find it? How could I have thought that the help he needed even existed in Northern Ireland. So far, I have paid for most of it, out of my own pocket. That is my duty, I am his parent.
Spending money to help our children is what parents do.

What irks me is that Northern Ireland has the audacity and arrogance to suggest they are going to deliver excellence regarding autism (ref: Middletown Centre for Autism Excellence) and are spending millions to try and prove it. Bear in mind  the "Excellence"  was removed from Middleown's name recently. How can Northern Ireland deliver excellence when "pathetic" is too good an adjective for their current provision?

Belief systems, money and the arrogance that only comes with ignorance is what this war is about, and not much else. Northern Ireland does not believe in or value children with autism. It knows that autism is not going away and the system is in almost complete meltdown.God help the kids.

There are also serious issues facing adults who have an ASD in Northern Ireland as well as their families/carers. Adults with autism have been forgotten. Most adults who have autism have very little hope of obtaining work or of living independently. Many adults have unaddressed conditions that are in addition to their autism, conditions that have wreaked havoc in their lives. Mental health difficulties arise very often due to decades of not addressing their needs in the first place. 

There are over 350 interventions that are currently being used to "address" autism worldwide, probably more. Whether you want these interventions or not, Northern Ireland generally only uses one of them. It's called the TEACCH program (Training and Education of Autistic and related Communication Handicapped Children ) "Oh, pardon me, did you just say handicapped?" Yes, I did. The UK version is called "Autism Independent" (a misnomer) and used to be called the Society for the Autistically Handicapped. "Excuse me again, but did you say "handicapped"? Yes, I did. I presume that the Society for the Autistically Handicapped must have undergone some very r adical changes to have it's name changed to Autism Independent! ( - but it didn't. It still peddles the same old crap called TEACCH. Health trusts pay for expensive TEACCH training ever year. When all you have is a hammer, everything becomes a nail.

Was a deal done between North Carolina (birthplace of TEACCH) and here? I won't go into TEACCH much here, because I have plans to tell you all about it at a later date but TEACCH is based on a premise that autism is a "culture" and that persons with an ASD thrive on routine. The most damning part about TEACCH is their belief system about our kids. It uses a lot of pictures and schedules but the two most important things a person with autism might want to learn is not part of the program - social communication and flexibility. Deliberately embedding routine in persons with autism (or anyone else for that matter)  is like giving cocaine to an addict - it's the last thing you want to do and in my opinion, it's criminal.

For many of your children  a place at a special school (dumping ground) is waiting for him, his chair is nice and warm and the staff have all the training they need in 'handling' (physically restraining) your child. "Oh, did you say you wanted your child educated? Ha ha, silly parent.

Remember, when your child turns 18, s/he returns back to you to probably live with you for the rest of his/her life. If you are a parent, think very carefully how special schools peddling the TEACCH method are preparing your child for life. If you have already 'bought' the candy coated stories from the head teachers of these schools about how wonderful their programs are, well it might be too late for you. But for parents with very young children, please think long and hard, and try to visualise your 6 foot 14 stone son who will be occupying the 'granny flat' and using his PECS book to communicate. Make sure that the environment in the flat suits his every sensory need. He will have had over a decade of being told the world can fit around him, thanks to the TEACCH program. Good luck with that. 

If you feel yourself getting angry about any of this,don't shoot the messenger.

This autism war has been very expensive and has achieved nothing for our children. The money has not been spent on rations or on artillery. Its been used to buy time, that non-renewable resource that continues to be stolen from our children and can never be bought back.

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