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Share information, support and advice on all aspects of caring.
136 posts
It has been a hell of a road over these years and now our health suffers due to years of violent rages, lack of sleep, lack of food, lack of family and friends support etc.
Sounds just like my "normal" kids ... maybe I should get them seen to!

No, only joking - nobody's kids are as bad as mine. But anyway (moving on hastily) my neighbours son is now miraculously cured. It must be all that organic marijuana his dad smokes!
I remember being in school with a boy who was brilliant. Always in the A stream in the Grammar School.In practical life, he had no skills at all. He did not even wipe his own nose or tie his shoelaces. Intellectually, he was far, far above me, but there was no communication with other human beings. He did PE, but very clumsily, and with stiff limbs, very like my own son, with Downs, runs.We were in school together from the age of 5, until I left at 16.
He sadly killed himself when he was 19. He went away to university, and came home at half term, walked into the water on one of our beaches and went forever, because he was so unhappy that he was so different.
His family was very different, all very outgoing, and in Amateur dramatics, choirs etc. And his mother worked hard to try to encourage him to socialise.
I wonder if today, this boy may have been diagnosed with autism, and had some sort of quality of life?
I think we need to be very clear about all this.

Yes, there are a few - a very few - people who received a diagnosis of an autism spectrum condition when they perhaps should not have. Nine times out of ten this was down to poor diagnostic practice. There are some professionals out there who will diagnose people with a condition they are happy to diagnose without any grounds to do so. A paediatrician in my area - no longer working here - had a thing about diagnosing an unusual variant of epilepsy to the exclusion of autism which he decided did not exist. Some 300 children with autism were misdiagnosed that way by one paediatrician.

And there's the rub. It's actually very hard to get a diagnosis of autism and always has been. In my area, in 1988, there were 42 children with the diagnosis and we knew of literally hundreds who should have had a diagnosis. One project my office is dealing with has some 60+ adults with learning difficulties and by far the majority have autism - it's that obvious. Three have a formal diagnosis. Victims of the anti-labelling brigade that cut diagnosis from 10-15 per 10,000 in the early 1970s to fewer than 4 per 10,000 in the 1980s. It's been one hell of a battle for parents, and children have lost out in a big way because of the trends away from diagnosis.

It's only because of the actions of parents who have fought to get diagnosis and support for their child, and a gradual awakening of professionals in the system, that has seen any kind of improvement in the situation. As far as I'm concerned, the major problem is still underdiagnosis. But there will always be someone who thinks their child should be diagnosed when it's clear there's nothing wrong. The important thing is to make sure that the diagnostic route is clear and open - and based around the child.
Even that is far from clear, Charles: there are no proven uncontroversial diagnostic tests, treatments or therapies for autism, the spectrum is incredibly broad; and it is even arguable that a diagnosis without an effective treatment is merely a label with little benefit.
I hate to air the autism research/support community dirty laundry and don't know all the details and often ignore what I hear, but it is likely that the multiplicity of organizations reflects more than a multiplicity of functions, it also reflects some of the conflicting views on approaches to treatment, research and support, and perhaps on occasion it simply reflects politics within the autism research/support community.
My guess is that we are looking at the C20th equivalent of "the vapours" - there are lots of serious issues there all right, but they are all being wrongly clustered together because we just havent managed to get the science right. Yet.
Sorry, Excalibur, but I disagree from experience. In my area there is agreement about the diagnostic criteria - the problem is down to individual interpretation and usually that's down to ignoring the evidence of the 0-3 developmental period (the one area everyone agrees on that I'm aware of). As for rightly or wrongly clustering individuals together, the root causes may be different but the current understanding of the group of individuals described as having autism spectrum conditions is that while the causes and perhaps some of the conditions may be different, the majority of individuals respond similarly to the same approaches.

So for the time being, if it walks and talks like a duck, it probably is. Autism was first identified in 1943. Asperger did his work in 1944. In medical terms, that's about last week, and there's a lot more to know yet. As it's a condition of the brain, probably the least understood organ in the body, it'll be a while yet before we know enough. But don't tell me it isn't worth trying to identify these kids and support them as well as we can - and keep learning ourselves.
How would that work then?
There are conditions which have no treatment ie Downs Syndrome, no treatment doesn't mean the condition doesn't exist.
There are treatments and therapies that can ameliorate the more troubling aspects of autism, problem is mainstream refuse to acknowledge this so they just carry on doing what they have always done, usually nothing.
This brings us closer to the original discussion and I'm afraid the reality is if you want something over and above the bog standard paed appt and bog standard education then you will soon find yourself up against a brick wall of professionals all colluding to keep each other within budget and big pharma in clover.
I prefer to think of labels as being signposts to aquiring treatment, education etc. appropriate to the child/young persons specific needs.

There are tests and treatments for Autism. Not all treatments work for all children as they are all individuals despite all having the same diagnoses.
Early intervention is by far the best way forward but because of late diagnoses this often doesn't happen and didn't in fact for my 3 but we dedicated our lives to helping them instead. At cost to our health but well worth it in the long term.

If you have come this far in life and still hold these views of a person with a specific disability then there is no point in trying to change your view as you are so obviously stuck with your opinion and are not prepared to move with the times and advances made in diagnoses, treatments etc.
I always feel for people whose minds are so closed to other options.

I also feel both insulted for myself and my wonderful children who have battled this disorder all their lives and have come such a long way now to be able to put back into society by working fulltime even though they still struggle to cope with life in general. My daughter even works with Autistic children and does a jolly good job too.

That is all I will say on the subject now because there is already so much misunderstanding out there and I really don't need to come here, a carers forum, to see it too.
The test as to whether diagnosis is worthwhile is that there are people with autism who were neither diagnosed nor supported for most of their lives in any meaningful way and their outcomes were truly dire. Most are institutionalised to such an extent that they will never cope with supported living. Others, like my son, whose autism was diagnosed as being severe, are well on their way to supported living. The difference? A diagnosis and support based around the needs highlighted by the diagnosis.

A label is not a diagnosis. It's like saying "this is a chair." Tells me nothing. But "This is a chair, you can sit on it and rest your feet" tells me a lot more. Rather more to the point, if you go to the doctor and find out you have a form of cancer, the treatment is based on the knowledge of that particular cancer, and the accumulated knowledge of what the best outcomes are - so far. It's a situation that is changing all the time, and hopefully improving. The outcomes are improving with cancer all the time.

And the same is true of autism. The more people we see with autism, the more we work with the autism rather than against it, the better the outcomes. Exactly as with cancer.
Duchenne Muscular Dystrophy is another condition for which there is no treatment and no cure but it does not mean it does not exist. What we also have to fight against is the fallacy that only boys get it and also that there is no such thing as a manifesting carrier. Girls do get it and I myself am a manifesting carrier. It is hard enough to cope with any condition I should imagine without having to fight ignorance and some ingrained attitudes as well.

A demonstrable learning disability is a perfectly valid reason for a child to have additional support needs and to receive that additional support - based on their learning needs assessment alone. They don't actually need some kind of medical label, unless we pander to the very old fashioned view that in some way a medical assessment is superior to an assessment carried out by an educational psychologist. Most people with learning disabilities don't have a medical diagnosis and probably never will. What is the point of medicalising something which isnt a medical issue?
Downs Syndrome is not a medical issue either. My son hardly ever sees a doctor.
Our kids aren't labels, they are individuals, and require individual assessment. Autism is far too broad a label to be of much practical use. As indeed is Downs Syndrome, as a diagnosis of DS is about as much practical use as a snowflake in a furnace.

As for the benefits of "early intervention" in DS, the literature is wholly inconclusive. Actually there is probably a lot to be said for "late intervention" in my experience, but this doesnt appeal to the legions of Speech Therapists who make their living by pronouncing this received wisdom sagely as if it were holy writ.
136 posts