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:
http://www.dhsspsni.gov.uk/meeting-with-society-of-parents-and-friends-of-muckamore-abbey-abbey.pdf.

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 working with him suggested that due to his hyperactivity and unmanageability 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)

Part of my personal "war" is to prevent my child being institutionalised and to keep him safe from people who think that is my child's fate. Any other parent would want the same. Belief systems are harming my child and many other children, adults and families.

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, 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. For some, the lucky ones, the tour ends after a few years or maybe a decade. For the rest of us, we are lifetime recruits with no pension and post traumatic syndromes.

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's not the part that bothers me. 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). Mind you, the "excellence" part was dropped from its title 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. The arrogance pops up everytime someone from the government or other sector covers up their ignorance of autism by appearing to know what they are talking about when in fact they should confess to knowing very little and at least be honest about the current state of affairs.

If these people knew what they were doing in Northern Ireland, if they were using and promoting best practice we wouldnt have this mess. As it stands children face a post code lottery to get a statement or classroom assistant. SLT and OT are very thin on the ground. Training for teachers and training for parents/carers is even less.

There are also serious issues facing adults who have an ASD in Northern Ireland as well as their families/carers. Most adults who have autism have very little hope of obtaining work or of living independently. Many of these adults have unaddressed co-morbid conditions that have wreaked havoc in their lives. Mental health difficulties arise very often due to decades of not addressing the needs of individuals with autism. Commitment to persons with an ASD is not present in Northern Ireland.

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 radical changes to have it's name changed to Autism Independent! (http://www.autismuk.com/) - but it didn't. It still peddles the same old crap called TEACCH.


Who decided that all children in Northern Ireland could only be taught via the TEACCH method? Was a deal done between North Carolina (its birthplace) 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 is like giving cocaine to an addict - it's the last thing you want to do and in my opinion, it's criminal.

Our children are the "handicapped" of the 21st century. The hierarchy of disability is alive and well in Northern Ireland, with our children being at the very bottom. With all the political correctness in the world, it hasn't changed the value judgements persons make regarding autism and other developmental disabilities. These value judgements continue to relegate our children to segregated and inappropriate special schools, or to mental institutions away from the rest of society. Entire families are affected by other people's beliefs and if you talk to 3 families who care for a loved one with autism, at least 2 of them have been, or are in distress of some description.

If you want something different for your child or you want something more, this is where you will be embroiled in a number of aspects of this war, namely money and beliefs. With one mindset about our children, I suspect the school boards and health trusts ask themselves why they should spend money on children who are not going to amount to much.

If you want ABA or RDI or even a mainstream education for your child, you may well have to go through Tribunal to get it. The legal department and special education at your local board are two separate entities and its of little consequence to your local special advisory assistant whether you lodge a tribunal or not, because the legal costs aren't going to come out of his budget, so fire away at this war all you want but remember, your kid has an IQ of 70, never forget that! Never forget that a place at a special school 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. 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'. It doesn't have to be this way. Others make these decisions for you and will continue to do so, as long as you remain quiet.

If you want a special school place for your child, that is well and good, but your child deserves a choice. In England there are autism specific schools, schools that work with autistic children only, schools run by the NAS, independent schools and private schools. We don't have that choice here. So if your child is in a special school ask yourself, if there was a better choice, would he be there?

If you feel yourself getting angry at that question I posed, ask yourself if you are justifying your child's placement at a Northern Ireland special school because of his need, or because you had no other option? Personally, I would have loved an autism specific school for my boy, one where they understood his personal complex sensory system and how it affects his learning. A school of total acceptance, a school just for him, where he is valued. One can dream. I am entitled, however to ask for it and fight for it. Just because every other kid goes to a special school doesn't mean mine is going there, or should go there.

We are very parochial here in Northern Ireland and nothing is frowned upon more than rocking the boat or being the odd one out. Conformity, where autism is concerned will never do our children justice. If you want it, you have to ask for it. I know there are parents who are very unhappy with their children's educational provision and who are demanding educational options for their children. I know you are out there, I have heard you, as parents, talking amongst yourselves. It's the education boards and government that needs to hear you though.

Back to beliefs again. Your child, if he has autism, will probably be tested as having an IQ of 70, a borderline "learning disability". There is nothing that says autism is a learning disability, in fact autism is diagnosed based on behavioural criteria. However, the reluctance to spend money on providing individualised learning programs to children with an ASD is easily covered up by labelling most of them with borderline learning problems.

The belief here is that children with autism can't learn, or don't learn well or learn so differently that it's not worth spending the money on them. I know many children and adults with IQ's that exceed my own (though not hard to do) but that are in the genius range despite being tested as very low as children. This is not to say that learning disabilities don't occur in the autistic population. However, a child who is so caught up with his sensory feedback needs or is possibly in physical pain, who only has a half hour window per day to learn is not going to be gaining knowledge at the level of his peers. Does he have a learning disability or has he got a hot wired brain?

It's often only a "belief" that there is a learning disability associated with our kids. It becomes a reality when an educational psychologist presents a test to our children totally inappropriate for their language or attention ability. (there is no "normed" autistic population and these tests can never be normed either) - they border on the unethical, particularly when they are given to young children with little or no language and no knowledge of social communication. Further, they have no bearing on what the child will be taught or how - they are administered simply to weed out those who need special assistance (costs money) and those who don't.

As parents we know how bright our children are - in fact in many ways, brighter than their peers considering the amount of chemicals firing through their brain every day. I know how to reach my child when I am teaching him something new. However, to deliver the kind of teaching I do, into a schoolroom would cost a lot and take too much of the teacher's time, so instead children like my son might get a nice new label of learning disabled, one that will likely follow them throughout their entire lives.

The final assault in this triad of curtailment is arrogance - the kind of arrogance parents experience from paediatricians, teachers, speech therapists, occupational therapists, and anyone else really, who does not know what they are talking about but try to fluff it up with a bit of jargon like "Kanner's autism" or "asBergers syndrome". I could forgive a naive teacher. I could even forgive a not so naive teacher, because teacher's are getting it in the neck, with no support and limited training.

What I can't forgive, is those who are charged with helping our children, and who are paid well for it, who don't know about autism. Some of these people sit on autism specific committees in both the government, and health sectors.They sputter and spit about autism. Their civil servants write their scripts for Stormont. They to and fro about autism as if they actually knew something about it. They get locked into one path with blinders on, and it quickly becomes too expensive money and time wise to veer off that path. Thus, new approaches, ideas, concepts become too difficult to implement - that all costs money. Parents are still being given ASD diagnosis for their children in paediatric clinics all over the North, and are still being told to just come back in 6 months time. What happened to early intervention? Why is it that a diagnosis of ASD, viewed by the rest of the world as a serious developmental disability is not being taken seriously by the Department of Health here? Why is early intervention only important for other countries but not here?

I do not have time to lobby government, to educate my political representatives, nor do I have time to attend groups. The autism war in Northern Ireland has forced me and most parents to rely on "leadership" to get us out of this mess. Leadership is all sewn up, in organisations like AutismNI and of course within the statutory sector. It was that leadership that caused the mess in the first place because it wasnt made up of parents. We currently do not have any leadership in Northern Ireland regarding autism. If I believed that there were 30 other parents out there who were willing to stand up publicly and take on organisations like AutismNI and the NAS and the government, I might get involved. But it looks like most parents who want their voice heard are very isolated. One sees the odd article in the paper from a pissed off parent, (see link to the right entitled, "is anyone going to help my son") but generally the voices of parents have been absorbed into sound proof rooms somewhere else.

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, time that continues to be stolen from our children and can never be bought back.