Dachel Media Review: Scottish Elderly, Whole Body, Panning Pan
Read Anne's comments afer the jump.
Sept 23, 2013, BBC News: Older people with autism in Scotland 'invisible'
Sept 23, 2013, Huffington: Autism: A Whole Body Disorder?
Sept 22, 2013, Sacramento Bee: Editorial: Brown shouldn't gut Assemblyman Pan's law on vaccinations
BBC News
"A charity has warned of an 'invisible generation' of older people with autism in Scotland whose condition is often misunderstood and misdiagnosed.
"The National Autistic Society (NAS) Scotland said there was still a tendency to only associate the condition with children.
"But one in five people with autism is thought to be over the age of 60.
"The charity called for action to ensure the needs of elderly people with autism were fully understood and met.
"It urged the Scottish government to act on its concerns as it implements its Autism Strategy for Scotland and rolls out £13.4m in funding to support people with the condition.
"NAS Scotland said that, of an estimated 58,000 people with autism in Scotland, more than 11,600 are thought to be over 60."
Seriously, you'd never say that children with autism are invisible, so would adults be?
Let's pretend that autism affects everyone at the same rate. It's just a normal human condition.
We've been really good at doing better diagnosing when it comes to children with autism---but seriously, we're forgetting all the undiagnosed/misdiagnosed adults with autism.
If they're out there somewhere then there's no need to do anything about autism but be aware. It's obvious that it's nothing new. Somehow, we've always provided for all these affected people--we just never knew it was autism.
And there's nothing that can be done about their condition. It's just the way they are.
Just like that British survey that found the undiagnosed adults who'd rather stay home than go to a party, I'm sure the Scots can find quirky adults and label them as autistic and settle the question of an epidemic.
I'd love it---only I want to see adults just like the kids I know personally. Ones who don't speak or have echolalia. Ones in diapers as adults and who flap their hands constantly. Ones with seizures and bowel disease. Ones who started out as normal babies but who suddenly and dramatically lost it all and regressed into autism around age two. ...These are the autistic adults that are also supposed to be out there somewhere.
FIND THEM!
Huffington
"However, what if autism isn't a 'primary' brain problem? What if the brain is just one of many body organs that are affected by a wider-reaching 'whole body disorder'? We know, for example, that there are a variety of other medical conditions connected with autism."
WHAT IF? "What if the brain is just one of the many body organs ..." What year is this? How long will experts be just finding these things out.
I have no more patience with pathetic writing like this as more and more children suffer.
I posted a comment and I've already been chastised--"You're really not helping anyone with this, you know?"
Sacramento Bee
Brown, however, in a signing statement, rewrote the law saying that he would direct the California Department of Public Health to 'allow for a separate religious exemption on the form' so that 'people whose religious beliefs preclude vaccinations will not be required to seek a health care practitioner's signature.'
"This is a constitutional outrage and a public safety danger."
So then the argument will be, just because I'm not a Christian Scientist doesn't mean I don't have a religiously-founded belief against vaccinations.
Roger, I sure worry for boys lately- the percentage of boys in special Ed/ behavior classes I have been in lately has been around 86%. Yikes.
Posted by: jen | September 26, 2013 at 06:39 PM
Dear Roger, Its great to hear from you again. I recall printing out and saving some of your earlier information. I do somewhat disagree with you on the possible cause of your autism., Meningitis would have been a terrifying disease for your doctors and they probably threw everything they had at it, and no doubt what they had was gamma globulin injections with large doses of mercury. This would have been the likely cause of your autism and your many health disorders. I believe that there is a cohort of children of those times who were given gamma globulin resulting in their being different from typical children, but usually not classically autistic, unless, like you , they were given the injections at an early age.
God bless your wonderful mother and good luck to you. May you become as healthy as you can!
Posted by: Cherry Sperlin Misra | September 26, 2013 at 03:26 PM
Roger, you are a true survivor and what you said makes a lot of sense- it is complicated but it is extremely frustrating that they aren't doing many decent studies on some of the real factors that could be involved. I have worked in some institutions in the past and certainly there were some kids who had what might be called autism today- I'm just pretty sure they didn't exist in the numbers they do now especially regressive autism. I think people here have allowed for the fact that disease can obviously cause damage to systems in some cases, maybe even autism. Certainly the kids today are exposed to a good many vaccines and less actual disease but they seem to be no better off. I'm glad you have persisted with your challenges, it's a good thing there are professionals out there (like DAN docs) who can help you to navigate through. Best of luck to you!
Posted by: jen | September 25, 2013 at 07:37 PM
Well said Roger loads more like you out and about sorry to read of your mums death...
All,,,, the Goverments don't want to know world wide..
Shame on them!!
God bless..
Angus
Posted by: Angus | September 25, 2013 at 06:47 PM
You gotta love the "I exist" campaign.It completely ignores autism as a medical illness,but I think I may know why,and it isn't for any of the reasons you might be thinking.
Some of you with long memories,or who frequent certain other online autism groups might recognize my name.A few years back,I posted an open plea for help,and answers,to a a lifetime of sickness,and regressions.It worked.I found a DAN! doctor,recently profiled by AoA,who did quite an initial workup on me.We found I had mutations on a number of the folate cycle genes,refractory celiac,severe megaloblastic anemia,and secondary methylmalonic academia and homocystinuria.So it was pretty clear from the start I had some serious issues with folate.I have since been found to have a secondary CD4/CD8 deficiency from the folate deficiency.I was started on leucovorin right away.Last year,after being on leucovorin for three years,at the age of 52,I tested positive for both folate receptor autoantibodies.I am now being worked up for mitochondrial disease by a prominent neurometabolic/mito specialist,who recently appeared at the last USAAA conference.
I am just what you might imagine someone who was born when I was,who had all these diseases,plus autism would be like.I never married,never went to college,I had multiple learning disabilities,and never worked.I lived with my mother until she died last year.My mother was unique,in that she worked very hard to keep me out of a home or institution,sometimes going to court when needed.Most parents were not like her though.It was the improvement from the leucovorin that kept me out of a group home when my mother died.
In the late 60s,and early 70s,kids were not diagnosed with autism as young as they were now,and I did not get my first official diagnosis,until I was in the sixth grade.This was 1971.I was reevaluated as an adult,and found to be more severe than Asperger's,but not as severe as classic autism.
I spent most of my life going from doctor to doctor trying to find answers.I now know I had more medical problems,and more regressions than most kids with autism today even have.I believe any fever can trigger regression seizures,vaccine or no vaccine.My mother said I had my first regression at the age of six months after an acute case of meningitis.I was born blind in my left eye,in a way consistent with mito.I have come very close to death a good half a dozen times from acute infection,or undiagnosed metabolic crisis.I had all the usual problems with head banging,and blackouts that led to wandering.Since these were the first things to go away with the leucovorin,we just sort of figured these were due to seizures.
It was three years into the treatment with the leucovorin,that I could say my autism was gone,but all I need to do is go off it or eat any dairy to regress.Three weeks ago,I had my first major seizure after starting on the leucovorin,and ended up in the ER.But thanks to the leucovorin,no regressions.I also have all sorts of medical problems,possibly mitochondrial,that kick in after I have been off the leucovorin.I know how fragile what health I have now is.
This is all just to say that there are people like me out there,who were born before 1990,how many we will never know.I think there are two reasons why you will not find may older adults who are as sick as your kids.
1.A lot of them are dead by now,because their problems were not identified and treated.It's just dumb luck I survived all those NDEs.
2.Those who are not dead,are in group homes,nursing homes,where they not only get horrible diets for autism,but they will never get the right tests or treatment to identify diseases like CFD,mito,or PANDAS-type diseases.If they have seizures,they are given standard antiepileptics,and we all know how bad these are for autism.
I do think there has been an increase in autism,especially autism with intellectual disability,but I think it's genetic,or more precisely epigenetic.A genetic epidemic.
I think what we are seeing now is the result of over a hundred years of toxic chemicals,and drugs,that have caused damage to genes and DNA.Damage that probably started generations ago.I think this may be too scary for a lot of people to accept.
This whole picture is a lot more complicated than most people are willing to admit.
Roger Kulp
Posted by: plus.google.com/111441381894370121536 | September 25, 2013 at 05:11 PM
Christine,
Of course you will get the odd case but I recall the reality in 2000 when I tried to write a newspaper article highlighting our local situation (Haringey, London) but was briefed against by the NAS. The point was that there were roughly 7 times as many ASD children in the primary education system compared with secondary - everyone was being monitored by the same services and this was despite the fact that diagnosis was more likely the older they were. The figures for Scottish schools (which unlike English ones were actually recorded) were very similar.
Even the project to re-allocate diagnosis was still-born: they are just not there.
John
Posted by: John Stone | September 25, 2013 at 04:32 AM
The " I Exist" campaign run in Scotland by the NAS
http://scottishautismnetwork.org.uk/newsletter/issue8/sasnnewsletter8.pdf
Currently my home town Oban has no record of the adults in the area and the un official reason for this is;because they don't have to budget for the autistics..Hey ! Ho!!!
Posted by: Angus | September 25, 2013 at 04:01 AM
As a Scot with an adult high functioning son now 51, who was diagnosed aged 29, I can see how they have been missed. They are wrongly labelled- but then again my son has an underlying condition that is producing his symptoms and it may mean that the ASD diagnosis is invalid! They are out there, but not in the numbers the NAS would have you believe. Part of the big plan to deny the younger children are damaged? What makes me really angry is that the Scottish Government are putting together a Local Autism strategy and it takes no account of the complex health needs of our ASD people, but concentrates on "care and support". is this because the planning is being influenced by those who provide this service? You bet! We have the NICE guidelines recognising the need for immune, metabolic, mitochondrial etc investigations, but we need those who specialise in these areas to be up to speed with the current research and to work together in a dedicated autism team. Currently, parents are having to fight with their GPs to get access to these consultants and if they get an appointment, they are faced with people who have never heard of the links to ASD. Stop wasting money and our children's lives an address the only urgent issue- our children's health and stop lining the pockets of the big parasites.
Posted by: Christine MacVicar | September 25, 2013 at 01:21 AM
I'm pretty sure I'm in the hidden horde, and that I would have been dead with my daughter's vaccine schedule. It's like they are thinking we missed out that we didn't have a boatload of vaccines reveal our existing, largely unapparent disability before, unfortunately, we survived out of babyhood seeming largely neurotypical and we developed some degree of communication ability and enough intellectual ability to think we can question their theories. OK, it's likely not quite like that, but I'm in bad mood, thinking about Pan's legislative assistance towards building up the number of future pharma slaves, I mean, customers. He's not in my district, but I'm interested in supporting anyone who runs against him, particularly if they truly will "gut" his bill with nullifying legislation.
Posted by: Jeannette Bishop | September 24, 2013 at 11:36 PM
To John Stone:
And I don't want the Scots to show us a 65 year old bus driver with a wife and 4 children who just discovered he's autistic. Shaaa...zam!
Posted by: Anne McElroy Dachel | September 24, 2013 at 09:00 PM
When I first encountered Kev Leitch formerly of LeftBrain/RightBrain in April 2006 in Guardian's newly constituted CommentIsFree blog he was busy citing a Scottish report in which the failure to find the projected adult cases was held up by him as evidence that they existed. They've been looking now a further seven and half years and still without success. You don't know whether to laugh or cry.
Posted by: John Stone | September 24, 2013 at 08:30 PM
You gotta love that Scottish attempt at damage control.
Posted by: jen | September 24, 2013 at 08:16 PM