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less aware of it in the past because sufferers would often be institutionalized or hidden away in a way that is quite outdated now.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?

I think this is an interesting thread and I welcome the discussion. Right now I don't know where to start trying to answer any of it though.
I believe there are so many factors that contribute to our knowledge and awareness, where previously so many children have grown up in almost what could be described as a 'survival' and determination to do so, whilst as many could be described as being abandoned on the outskirts of society (and from their families), they found themselves 'lost' and our prisons are filled with people who have been so lost throughout their lives and are being Dx now as adults. It would be very interesting to find out the factors and incidents of suicide amongst the population too and it wouldn't surprise me to find that there is a prevalence of the population who would come into the neurological disability realms and discover that this was a driving factor in some suicides (maybe quite a lot in fact)

For myself, my greatest fear is that my son will end up being so lost and suicidal (and he has been) that I cannot help him regain or realise he is not alone, he is supported, he is understood as much as he can be, that he will have a decent future and my purpose for him is to help him to have that future. I'm a mamma tiger and I've grown very sharp claws in my battle to protect, support, nurture and stand up for my DS.

A child who cannot walk does not have to drag themselves around on the ground before people realise they need help and support. A blind person does not have to bash into things and suffer great pain before people realise they need help and support. It is an automatic, wholistic understanding of their every need to understand the world and be part of it.
Our children and our families have to fight, battle, beg and plead and suffer untold pain and discrimination to gain every single bit of help and support for our children...and that's the greatest sin of all...even with the knowledge and diagnostic tools that exist now...our children have compromised childhoods, rocky pubescent years and we as parents just always desperately hope we can get them through it all and come out the other side with a future and light at the end of their tunnel. There is nothing more painful for a parent than to hear their child of 6yrs old say they wish they had never been born and feel they have no place in the world. Seeing your child deliberately hurt themselves because they feel so bad...and bad people have no place in the world and nobody cares.

I have never met a family with a child who has ASD or associated conditions, who has not had to hear their child say similar at some point during their childhood....

Awareness, respect and real acceptance and support...that's what our children need the most. I think the hardest part of being a parent with a child with ASD is how impossibly hard it is to secure any help and support for them and having to watch them fall and fail and suffer because nothing happens in a timely, proper way.
It also disgusts me and angers me like you wouldn't believe

But it is not just about outward/visual stimuli - I genuinely wonder about pesticides, mobile phone signals, dietary factors, additives, vaccinations, pre-natal scans, antibiotics routinely given to beef cattle, etc, etc, etc, - all these things that are routinely used take a very long time for us to know for sure whether they are causing problems for the human race. I just wondered if anyone had any theories or anecdotal evidence on whether we are unwittingly 'doing something' that is making autism more prevalent.

Aww porridge your poor boy, yes I can identify with that too, my son has said similar things.

Lots pf people do think though that the ability to speak means the autism is 'less' it isnt at all though, its just different.

I really really don't think its environmental Fellatio.

Looking back my grandfather probably had ASD, he was born in about 1908? and died before mobiles etc were in use! he ate a simple diet [bred and ate his own meat!]

I do think that environment can damage in some ways, but I don't think autism is caused or added to by it.

FN absolutely. My DS is hypersensitive to 'outward stimuli'. He has Sensory Processing dificulties.
I have often argued that he is equally hypersensitive to atmosphere (emotional) and will be the first to notice if I am happy or down. And he cannot cope at all if I lost my temper. Likewise if teacher is having a bad day, he will too

He is also hypersensitive to any other changes...routines, diet, hot days, cold days. Becomes very sick very quickly if he gets ill at all.

Completely my own theory here, but based on experience with DS and my readings, I often wonder if HFA children are like the canary in the mine. The ones that are most susceptible to environmental toxins.

So, whilst we acknowledge that modern day humans are bombarded with more sensory stimuli than ever before and that that may exacerbate autism (and ADHD) the numbers of affected people has always been the same, but the goalposts and expectations in what constitutes 'normal' societal behaviours have moved?

My DS is Dx ASD, ADHD and Dyslexic ...so my view is driven. I agree that this conclusion is possibly right but at the same time ASD is very broad and difficult to Dx so it maybe also means there is a discrepancy in the ability to recognise ASD as readily as ADHD and Dyslexia iykwim...and therefore it is quite likely that these statistics are skewed.
It is also interesting that there are many ASD specialists who are beginning to believe that ASD is the primary Dx and that the ADHD is more of a symptomatic condition stemming from ASD....so developing supports and interventions for the ASD person will actually discount many of the typical symptoms of the ADHD...
Our specialist is of this opinion and has taken my DS off his Ritilin meds and we are now concentrating on the ASD as the primary focus.

I'm in 2 minds at the moment and so is my DS. We both agree that he is more able when taking the meds and my DS wants his tablets back because he feels out of control and can't think straight or hold a reasonable conversation at the moment. My DS is a very frustrated and angry young man at the moment which is making any sort of progress almost impossible for either of us! I think it needs to have a balanced approach of both areas being addressed simutaniously....appointment soon to address this.

It seems that the ADHD is often the first Dx and ASD comes much further along the road and often not at all....

That's pretty much what I think, but I'm also interested in the effect that the long, slow build up of contaminants and pollutants in the biosphere is having on humans and animals in general.
The canary idea sounds like a possibility to me.

Thank you Poltergoose!

You were totally on the nail though.

I agree with Amber and PolterGoose. I believe it has always been here, but viewed differently . 200 years ago, people with classic autism were "possessed", 150 years ago, "the village idiot", 100 years ago, they were locked away, and that remained the case until well into the latter half of the last century.

Those on the "milder" end of the spectrum were odd and labelled in other ways, either with psychiatric diagnoses or derisive terms, and expected to fit in or go away. In many cases, the pressures to conform intensified underlying mental health issues and these people ended up institutionalized or dead. Vincent van Gogh is a perfect example of this.

Now that the existence of a spectrum is widely accepted, we can see that while those on the "classic autism" end of the spectrum are profoundly affected, and support for those individuals, while it can be challenging, is widely available. Those on the "HFA/Asperger" end of the spectrum, on the other hand, tend to fall between the cracks. Either they have become so adept at masking the effects of their differences that they can fit in, but it takes such a toll on them as to leave them physically and emotionally empty, or they "stick out" and are ostracised and blamed. Individuals are still profoundly affected, regardless of their place on the spectrum, just in vastly different ways.

Grouping all individuals on the autism spectrum under the same umbrella is akin to saying all amputees are the same. An amputee who has lost a leg and one who has lost an arm both have distinctly different needs, and are both profoundly affected, but in very different ways.

And, as the last comment (at least in this post - I talk a lot)... I do know of one (and ONLY one) family who claims their child is autistic, but the kid does just lack structure and discipline. He controls his parents, is rude, talks back, curses and is manipulative... possibly a sign of some pathology, but definitely not autistic. The parents refuse to accept any help for him or themselves but want to get whatever financial gain they can, and impose nothing that even vaguely resembles discipline. When the child is here without his parents, he is entirely different. Plays cooperatively, is polite and respectful, follows the rules and our home schedule. We have had others who know him in his home come here and say the same thing - that as soon as his parents are not around, he is a delight to be with, both at school and out in the community. His parents, however, swear he has autism (but won't get him involved in any therapies, or attend any support of their own). They do, however, keep pushing to try and access thousands of dollars in annual funding (that they have been turned down repeatedly for, because they can't find a single professional who will put anything in writing to support their claims, even in private assessments).

Sadly, because the spectrum is not black and white, there ARE those who will seek to abuse it.

Very interesting posts Leonie and Bee and PolterGoose

Yes, yes to the huge range of sensory triggers - not least in the classrooms where there have to be all-singing, all-dancing displays on every available surface

DS has a DX of classic autism,do I think he's lost in his own world? Definitely not.
That quote is just as annoying to me as aspergers is mild.

And as annoying as we are all on the spectrum .

Yes I agree.

And there is sadly a lot of suffering that goes along with classic autism. A child in DD's class is so hyoersensitive to noise she screams and beats herself on the head all day.

Its not some happy lost in own world existence and I would imagine children with classic autism still have the same unhappy feelings but cannot express them.

So I would definitely prefer DD to be higher functioning.

nothinginthefridge, that one is one of my biggest annoyances!

We are not all on the spectrum, all autistic people are on the spectrum!

Fanjo, yes I can imagine the frustration must be immense without a way to express thoughts/feelings.

I am not saying HFA and AS arent disabling. But I would disagree they are more disabling than severe autism.