Autism - some genuine questions

[FellatioNelson]

I will state from the outset that I do not have any direct experience of serious autism and none of my immediate family are on the spectrum but I have relatives and friends whose DCs are somewhere on the spectrum, ranging from suspected/borderline Apsergers to full-on diagnosed Autism of the most serious, catastrophic kind. And of course MN makes you very aware of just how many families are dealing with this in their lives to one extent or another. I realize it is a bit of a catch all term and can affect people extremely subtly, or very obviously and appallingly.

My genuine question is this: (and I promise faithfully that this is not meant as mischievous shit-stirring)

Are we doing something either environmentally, medically, nutritionally, or otherwise, to somehow create the sheer number of young people being diagnosed with ASD? I know classic Autism has always existed - perhaps we were less aware of it in the past because sufferers would often be institutionalized or hidden away in a way that is quite outdated now. And people with Asperger's would just have been considered eccentric, difficult, geeky, awkward or whatever, in the same way as people with ADHD were just plain naughty or scatterbrained and people with Dyslexia were stupid.

But even so, even allowing for all of that, the sheer number of children being diagnosed with some form of ASD seems to be off the scale in the last ten years or so. Were there always this many sufferers and we are just better at recognising the signs, or are we unwittingly doing something (globally, collectively, not individually) to make it happen?

Sorry, I misunderstood then as I thought that was what you meant :)

You did indeed say 'no form of autism is better or worse'

No offence taken polter, I was just trying to point out that it doesn't matter where on the spectrum somebody is they all have difficulties.
Me personnely would fall apart if my child said to me he wants to die ect,but just because my child doesn't have the ability to say that to me it doesn't mean he doesn't feel those emotions.
It just hits a nerve with me because I hear people say often that DS is lost in his own world but he's so happy grrr they don't see the blooming hard work it takes just to get him out of the house and the smile on his face is his default anxious leave me alone look.

I already said I was sorry I misunderstood you and was explaining what i had misunderstood, so no need to fet snippy and accuse me of misquoting, thanks

Sorry, I was just posting in a hurry on phone and Dd is kicking off

I agree that years ago it just wasnt seen. I truly believe it was always there though. Theres more awareness now. My DS has 'classic autism' and meeting other children who are on the spectrum last week it amazed me how different they all are. It did however feel me with hope.

zzzz, I know professionally of many sets of twins where just one is affected. I wonder what research is being done into this?

Haven't read all the thread

But broadly researchers are starting to divide autism into two groups

1. multiplex autism - where there is more than one case in the family. In these cases you tend to see traits in parents.
2. simplex autism - one case in the family with unaffected male siblings. In these cases it appears that autism traits are not in the extended family.

Ds1 is severely autistic and a simplex case. We have a family history full of autoimmune disorders and he regressed after a viral illness. He is very affectionate, very funny, can get very stressed. He is a teenager who is completely non-verbal. This is probably due to a movement disorder of some sort and with the donation of a communication aid is now beginning to make himself heard. You can see him here

In his school (SLD/PMLD - the cases of children with severe non-verbal autism (and no other dx - eg no CP or anything like that) has apparently increased considerably over the last 20 odd years. There was no-where else for them to go so I don't think this is mis-dx.

It's well worth reading the Questioning Answers blog (have a google) if you're interested in causes. And also have a look at Paul Patterson's work. Paul Whiteley who writes the Questioning Answers blog links to Patterson's stuff quite a bit.

And there is no such thing as autism. It is 'autisms'. DS1 has very little in common with the vast majority of very high functioning people we come across. Usually they have a family history of traits, no history of regression and a whole different set of problems than him. Although there are always exceptions (He is sociable, likes loud noises, loves a party, likes going to new places, but has difficulties waiting at all, had (now sorted) gut problems, movement difficulties, zero speech, and some not inconsiderable cognitive difficulties). Different etiology and different condition.

zzzz - paul patterson has said some interesting things about the twin studies and why it doesn't necessarily point to genetics.

saintly, thanks for sharing your blog

In my borough, there are not nearly enough specialist placements for all the children with ASD whose parents would like them to attend a specialist placement. And very few schools/teachers who are sufficiently well trained/organised, etc to support them appropriately The only mixed-needs specialist provision is now entirely for ASD (over the last 6-8yrs) and there are 2 or 3 additional units in mainstream schools.

zzzzzz, one of the as yet undiagnosed children that I work with finds his mainstream classroom reasonably manageable when his classteacher is in because she is very definite about rules and teaches in quite a routine-based way which means he knows what to expect, etc.

OP - if you look at Autism Speaks and the studies they are funding there is quite a lot of money going into looking at environmental factors.

I strongly suspect the key to some autisms is the immune system. I'm pretty much convinced it's the underlying problem in ds1's case. Particularly a tendency to inflammation (that's a vast oversimplification).

In terms of those more severely affected being lost in their own world. Not really. This video shows ds1 discussing what he's been up to at school that day (naughty boy). OK he doesn't actually manage to answer the cross/silly stuff (he usually can) as he's too fixated on talking about glasses. I think the video does show the problems he has just sitting though, and how much he moves - I suspect most of the bounding across the room and leaping is completely involuntary.

It took me a long time to realise that a lot of what ds1 does is entirely involuntary. His responses are a mess.

A few thoughts:-

I'm of the firm belief that what we currently describe as "autistic spectrum" is actually up 20 seperate disorders that as yet we do not have the knowledge to required to make differential diagnoses for yet alone ascribe causal factors. The spectrum is just too HUGE in it's range of manifestations & presentations for me to think otherwise. Neurology is a science still toddling along in infancy, and collectively mankind does yet know what he doesn't know in this area.

A few potential causes?

In the recent past a lot of the higher functioning kids just ended up as teen suicides, social misfits, or went through the borstal/prison system without their being any recognition of their neurological differences - let alone any help available.

Sensory issues constitute a huge part of the daily problems for more children than is commonly acknowledged. My own son would have done just fine I suspect in a quite, plainly decorated one room village school house with a maximum of 30 pupils like that his Gran attended in primary. Clear instructions, routine, rote learning and an individual sloping desk would all have suited him just fine - especially with a teacher free from regulatory constraints to adapt her teaching to his learning style rather than that of the latest political diktat.

Im convinced by the link between brain and gut - be that diet or infection or allergy related. If drinking alcohol in pregnancy affects the brain why shouldn't some other aspects of nutrition? It's been proven that an apple grown 50 years ago had a FAR higher vitamin content than one grown today. It's also generally accepted fact that omega 3 supplementation helps ALL children's brain development. We just don't have the detailed answers to the questions raised by this topic just yet, and the little we do know is bogged down by political and money making factions all too often before any firm research conclusions can be drawn.

The twin thing - I'm immediately drawn to the idea of one twin perhaps not getting quite enough nutrition in the womb. Not of a degree serious enough to show up on growth scans etc, but enough to cause some degree of harm to one child. It's acknowledged that twin and multiple births are higher risks for more obvious disabilities than single ones and theres a lot of research out there in relation to twin:twin syndrome in relation to these.

More low birth weight, IVF & premature children are surviving - again not all the disabilities that result from this are the "obvious" ones.

Father's being older is being recognised as a risk factor for a variety of neurodisabilities from schizophrenia to autism. Nothing was ever the mans fault back in the 1970's - male issues in disability weren't even considered.

For some its genetic. Women choose their partners in a way that often wasn't possible even 50 years ago for many. Sadly sometime we unknowingly pick those with AS/ASD traits according to the old adage "birds of a feather".

We don't know what impact incidents such as Chernobyl have had, much less the myriad of pollutants & gmo in our foodstuffs and environment. It will be heartbreaking if we discover at a later date that the flouridation of municple water supplies contributed to the increase for example, as this was done in good faith in order to improve public health. Increased travel has brought with it increased exposure to a variety of pathogens + the vaccine debate continues to rage.

In evolutionary terms is it REALLY such an issue?

I'm often slightly shocked nowadays by the prevalence & promotion of "group think" even amongst the most highly educated. Not every single situtation in life is best solved by consensus and committee - a successful society needs it's original thinkers if it is not eventually to decay through inertia.

I honestly think that in order for mankind to scale the heights of evolution, discovery and civilisation DIFFERENT brain types were a necessary part of that whole process & that we've forgotten that in our wholesale move towards urban living and industrialisation of the last century or two.

A small historical village would have celebrated neurological difference as it would have increased the strength of the group in a purely survival sense. To thrive the group would have needed the bold risk taking warrior (adhd), the mechanical fixer (AS), the walking encylopedia of medical herbal knowledge (ASD?), the diplomat (NT), the creative (dyslexia?), the spritual seer (schizophrenic traits), the weather forecaster (SPD) etc, etc .

Now we are all too keen to hammer down any nails that stick out. perhaps forgetting that we owe our very existence to those whose thought patterns differ from the norm. We also forget that we may at some point in the future need these individuals in order to ensure our survival as a species against the impact of some as yet unknown disaster.

I hate the cliched image of kids with ASD as little professors..so far from my DD it's not true.

could someone please explain to me where hfa is on the spectrum??ds is getting a re diagnosis and hfa what mentioned,wont know till my next app on 6th dec.

HFA would be autism without a learning difficulty or significant speech/communication issues.

That is it in a very basic nutshell.